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Support thread for mums caring for child/teenager with CFS/ME. Part 2.

(549 Posts)

Nice sparkley new thread for us! grin

This is the sanity thread for those with DCs suffering from CFS/ME.

"Old" members include:

PositiveAttitude - Me! wink
Dwardle*
*Optimisticmumma*
*twentyoneagain*
*Chocaholic73*
*Katsh

and Dinamum

I was going to do a round up to introduce ourselves to any new people that wanted to join, but the old thread won't let me scroll back beyond January, so not much good and if I do it off the top of my head I will get it all wrong...
SO just jump in and keep the support and sanity flowing! grin

Come and rant and rave, get support and advice from those who have been there before you, but most of all come and share positive steps forward, no matter how small and insignificant to people who don't understand. Lets celebrate those small steps together. grin

I declare thread part 2 now open.......

dwardle Tue 02-Feb-10 18:15:53

Hello Positive and well done for opening new thread.grin
I am despairing about my dd so can understand how you feel. V hard to post also about some stuff cos she has done LP and I still think it is great but she is not better yet.sad
Really feel for you and esp for dd - she WILL get better but it will take time. Please do not give up posting and do not give up hope. You are right - celebrate the small steps. Any good ones to report today?
dd now has killer cold so has retreated once again to settee land.

katsh Tue 02-Feb-10 21:47:27

Hello and thank you for the new thread. We definitely did too much today and we're paying for it with dd unable to sleep despite her 2 tablets. Could be a long night. However the doing too much was a music group for babies and toddlers that was willing for us to come along with ds who is 2 and with dd who is 7. I've been really missing taking ds to things as I've been home all the time with dd2 so I wanted to be able to bring them both when she is well enough. Lots of groups weren't willing to allow her to attend, but this lovely lady welcomed her. Unfortunately once she got over her car sickness ( 10 min drive) she had a fantastic time grin and didn't stop talking all day! It's the balance thing isn't it, and yet it's so important that at her age she still has some fun with other kids when we can.
On another note, my lovely dh has suggested that I should take a break from everything and he has offered to take a week off work to let me holiday alone. I'm finding it hard to imagine leaving, and it feels completely selfish and indulgent, and yet I think it would be good for all of us, as I'm so 24/7/ with dd2 that she needs to know that other people can also look after her. I'm not sure what to do, but I'm working towards trying to go.
I do hope everyone else is hanging in there despite the general crumminess of CFS .

twentyoneagain Wed 03-Feb-10 13:40:43

Thanks so much Positive, happy to join a new thread. Does anyone know if old threads are accessible for ever or do they get deleted. It's just that I find it a good journal of DD's illness and is handy to refer to occasionally.

Katsh your DH is a star and if you can, I think you should definitely get away for a while. It is so stressful looking after a sick child and although we all do it willingly, we do need a break at times and as you have other small children it has been especially hard for you. You need someone to take care of you for a change and I hope you can take the offer up .

Dwardle - so sorry your DD is suffering with a nasty cold. Our DD takes a multivitamin with probiotic which apparantly helps to boost the immune system. Don't know if it would help but probably wouldn't hurt to try.

Hi to everyone, hope things are ok.

Hi all,

21 - I am not sure about all the old threads. I seem to think they are kept for quite some time. I know what you mean about it being good to look back and track how things are going. How is everything now for you?

Dwardle - Hope the killer cold soon clears. It must be very frustrating for you to have got so far, but "stuck" there again. sad Roll on the spring I say. I am hoping that makes a huge difference.

Katsh - I would advocate going away and having a wonderful time for yourself, then you can come back refreshed and ready for the everyday challenges again. Last year when DD was heading for her worst we had a holiday booked for all of us. I ended up going and leaving DH & DD3 behind. I really struggled with the descision to go, so I understand your apprehension. Right up to the day I went I was unsure, then spent a day worried sick about DD3. After a day or so I was able to relax and I then realised how stressed out I had become after nursing her 24/7 for so many months. When I came back I felt so different and was able to really care for her again as she needed at that time. It certainly helped my sanity! I hope DD is feeling better today. It is so hard when they want to do things, but you, and they, know that they will pay for it later.

Hi OM hope you have found us!

Well, DD3 is now at the cinema on a "first date" with a new lad! She has been looking like grin all day!! She has talked to him about CFS/ME and he seems really understanding - last one was a nightmare and just would not even bother to listen! Anyway, she has gone to the cinema so that she can fall asleep and no-one will notice! (not very romantic for a first date to fall asleep, though hmm) I am so nervous and excited for her. We are expecting the crash tomorrow, but she so wants to be a normal teenager, she said she will enjoy tonight and worry about tomorrow in the morning! (I can hear Mrs CBT tutting as I write that!) So I think I am grinning as much as she is today. One small step forward!! grin
Everyone in the house here still managed to avoid all the nasty colds and coughs that have been going around. Some sort of miracle I am sure! DS & DD4 have received awards for being 2 out of only 45 in a school of 1000 to have 100% attendance last term. Special mention as they were the only brother and sister, too. Long may that last. I am thinking that each day we avoid it is another day for DD3 to be stronger to fight off infections/virus'.

I Hope everyone's week improves.
Bye for now grin

21 - Just looked and old threads are available right back to 2001, so I don't think you need to panic yet!

optimisticmumma Wed 03-Feb-10 20:23:35

Just typed a huge message but lost it!Argh!
I'm here though!
Thanks for new thread PA Glad to hear 2 out of 5 are 100% healthy!grinDD never picked up illness when she had CFS only when well againhmm. All the people we saw agreed that it was due to her immune system kicking back in...
21again - I too am sad to see the old thread go. I thought I might print it off as a record and reference..not sure why..just quite a journey I suppose...
Dwardle - very sad DD is not great. Take heart and don't give up on LP. It's not instant for everyone. Our trainer took 8 months of intensive work to get results. Ended up living with her mum and handing over the care of toddler so she could completely focus on it. Keep DD going with it even if it seems tempting to ditch it...
Katsch - definitely go away. You need it and what a brill DH! You will all benefit hugely. I'm grin with the mother and toddler lady but angry at the others. How silly not to allow a 7 year old in. Perhaps they think CFS is contagious grin.

Hi to everyone else on the thread and lurking.

DD still well here and watching as I type so hey ho can't say much....

dwardle Wed 03-Feb-10 21:19:25

No time for a long post but
Katsh - go away - you will all benefit - if a week is too long, do 4-5 days. What a great DH. Will also be positive for him & dd and boy will they appreciate you when you get backgrin
PAO - what a great postgrin
OM - you are a star - I had no idea that it took some people longer to grasp. You have given me a lightbulb moment - Thankyou
21again - thanks - had started dd on vitamins so am now feeling pleased with self!
dd feeling much better this eve

Have to come and add a post because every time I scroll through my "threads I'm on" I read "Katsh - go away!" and do a double take each time grin
I know it is meant in the nicest possible way, of course!

Here DD has done a spectacular crash! sad Hardly surprising! Problems with eating/ walking/headache/noise irritation/ light sensitivity and just about everything else yesterday and so far today! Oh well, it was a risk she wanted to take and she was prepared to take the consequences. I suppose I just always hope it wont actually happen!
Planning a restful weekend and hopefully next week she will pick up again!

have a good weekend everyone. smile

katsh Fri 05-Feb-10 11:48:04

Thanks for the added post Positive ! I've taken all the Katsh go away's in the manner intended.

I'm really sorry your dd3 has crashed. Did she enjoy her night out? I hope that she picks up quickly and that the weekends sees a reduction in her discomfort.

Dwardle - how is dd? Hope she is feeling a bit better again.

Om - glad dd is well. I hope you have a good weekend.

21- hope all is well with you.

Thanks all for the encouragment to go away. I need to go and see my parents who live a plane ride away, so I'm taking dd1 next weekend for a quick 40 hr visit. It won't be particularly relaxing ( my mum isn't well) but it will be a break from cfs. We'll see how dh manages with 2 left at home and then I'll maybe think about taking him up on his offer. I really don't want to land him with more than he can manage. It has however been fun thinking of all the things I could do with a week! Even that has been uplifting - I recommend it to you grin
I've been going to a course at my church called "How to be a Secure Woman" and they dealt a lot with loss this week. I was encouraged to realise that I think I've mostly come out the other side of the "grieving" for dd2 with regard to her CFS. Of course it's always sad, but it isn't exhaustingly sad anymore. We had a good question not related to loss but just to do with our characters. If you were to be represented by a sports player what player would you be e.g. part of a hockey team, solo long distance kayaker, squash player, tennis doubles , part of a relay team etc. Very thought provoking! I just add it in as something that you might enjoy mulling over, as might your dd's. I found it quite an encouraging insight into myself.
Hope you all have a good weekend.

katsh Fri 05-Feb-10 11:49:04

no idea what that apostrophe is doing in my first sentence grin please disregard - I do know how to punctuate - honest !

dwardle Fri 05-Feb-10 16:45:35

Set me thinking, now, Katsh!
V interesting to think about loss - had not really considered that but yes - there is loss. I thought I was over it, but it still sometimes hits me wham!

twentyoneagain Sat 06-Feb-10 07:49:45

I think I can relate to the feeling of loss, yes we have lost the child we thought we had and someone else is lying there unable to function properly. I guess we have also lost what we thought they were going to turn out to be - whether we like it or not we do have dreams of the future - and suddenly those change.

Very sorry your DD has crashed Positive but I agree that it is important for her to have some kind of normal life if it is at all possible. I am hoping she picks up quickly and that the date went really well.

I am feeling a bit concerned for DD at the moment, she has been very quiet this week and last night when I picked her up from school she cried and told me that her three friends were ignoring her and leaving her out. She has no idea why and is not the type of girl to confront them and ask what is wrong. She is not comlpetely on her own - there are other girls that she gets on with - but it is very hurtful and quite honestly I do feel that this can potentially damage her. I know that these things usually blow over - given time - but it is hard to watch when they are sad. We have talked to her and encouraged her to phone one of them but she won't hear of it. Hey ho, the worries never stop do they?

Hi to everyone else, have a good weekend.

chocaholic73 Sat 06-Feb-10 15:14:18

Hi all. Like the new thread PA. I'd definitely go along with the others Dwardle and take some time out. I have managed a couple of nights away each year and it does make a difference, although I struggle to know what to do where to go and always feel a bit of a loser sitting eating my dinner on my own (but that's just me!).
Interesting conversation about loss - I have definitely been through stages of feeling that but mostly have just got so used to the situation, that I don't think much about it apart from when I meet people who don't know DD. I escaped recently to a close friend's 50th birthday lunch (kind of giving my age away there) and met up with people I'd known when they were all small. All the talk was about A Levels and applying for uni (DD would be Year 13 if she hadn't got ill) and I got fed up with having to explain how things were ..in fact I found it very depressing.
DD herself is doing OK, her main issues at the moment seem to be back pain which the Perrrins/osteo lady says is due to lying down for so long which makes a lot of sense and emotionally where she seems to really struggle for days and then will just snap out of it.
Hope you all have a good weekend

Choc - Great to hear from you. Understand you feeling down after having to tell people how life has been. People mean well, but having to explain stirs up all those negative frustrations, doesnt it. I am glad your dd is still doing well and improving. How is the "schooling" going?

21 - I hope your DDs "friendship" issues resolve before she is affected too much. As you said, another DD you would be able to ride with it and it would soon blow over, or move on. Are we going to be forever more nervous for the CFS/ME DC from now on?

Katsh - I hope your weekend with your mum went well, even under hard circumstances. I hope you come back and realise that DH has coped so that you are more confident about a proper break for you. Thanks for the interesting bits from your course. Yep, definitely feel "loss" at times. More so at the beginning, but still knocks me sometimes. Not so sure which sport I would be, though.

Struggling on here, but DD is happy with new boyfriend, so not so stressed as when she is "down".

Have a good weekend. grin

twentyoneagain Sun 07-Feb-10 16:03:56

Hi Choc - glad to hear your DD is getting better, presumably still doing the Perrins? I think there's a lot of emotional baggage after a chronic illness and on top of normal teenage hormonal problems, it's no wonder your DD struggles sometimes - I think they all do.

Positive it is good to hear DD is happy with her boyfriend. It can only be a good thing and he sounds very understanding. Long may it last . You are right about being nervous for a long time re CFS DCs, I wouldn't have felt worried if it had been elder DD, but there is an underlying fear - that I thought had gone - but resurfaced again this weekend and brought back all the old feelings of worry again. I am sure it will disappear quickly as each problem is dealt with .

Katsh I hope everything OK this weekend and that your Mum not feeling too bad. I'm sure your DH has coped admirably.

Hi to Optimistic, Dwardle and Dinamum, Solo and EricaMaye. Anyone heard anything of Nickschick lately - wondering how her DS is now.

optimisticmumma Sun 07-Feb-10 18:03:07

Hi all of you! I need a quick bit of support!
Sorry to ignore all posts over the weekend but I have just got back and a form to say my DD can have the cervical cancer jab needs to be filled in tonight!! Basically, she wants it done, I do too but I feel a bit nervous that it might affect her. Can anyone give me an opinion?? Should the fact that she had CFS make a difference to my decision. Obviously if she was in the throes of it I would think a lot more carefully. We only got the form on Thursday and it would cause a big bust up if I don't sign it and my DD would say I am fussing!!!! Help!

twentyoneagain Sun 07-Feb-10 19:15:36

All I know is that a friend who has a DS with CFS was advised by their consultant that there should be no immunisations for at least a year after recovery unless absolutely necessary. We have not had DD vsccinated atm, and nurse said fair enough, it can be done later on.

Hope you can make the decision easily - it is hard isn't it? Let us know how it goes.

Sorry OM. Can't do advice on that one. I am just keeping my fingers crossed we don't get any vaccine invitations coming along!
I did avoid the swine flu one. (absolutely no use what so ever for your decision!!!! blush)

optimisticmumma Mon 08-Feb-10 13:32:07

Thanks so much for your responses! I have managed to talk to the imunisation team who were very understanding. They are not sure that there will be funding for 'catch up' after this academic year and the doctor also said it would be a fight! However, the worst case scenario seems to be that it would cost £300 if we ended up having to pay even though they thought that unlikely! My problem was that it is her legal decision and I wasn't sure she wouldn't be pressurised by a nurse or her friends into having it done iyswim. They like to have your consent apparently but it is up to her shockShe's 14 fgsshock
Anyway to cut a long story short I have decided to try to persuade DD to have her first injection in September. That way she is 'in the system' but is also 18months beyond LP!
Phew!

21again - really hope your DD picks up! Girls can be so vile! I often have moments when I feel quite worried about my DD. I think it's a 'shadow' that you learn to live with. I guess the longer they go on improving/getting better the more this lessens. Try not to worry too much I'm sure it's 'teenage' stuff rather than 'CFS' stuff!

choc - nicew to hear from you. Glad your DD is picking up!

Sounds like a very sensible decision, OM. I hope she can be persuaded.

Everything gone wrong here with DD. Cant walk again and just keeps saying "I thought I was getting better". sad
I am hoping it is just a quick dip and she will bounce back again within a few days.
<<hopeful emoticon>>

dwardle Mon 08-Feb-10 19:42:21

Just logged on - I did not let dd have her jabs - either cc or the tetanus etc update. Paed said not to worry but I was not happy. DD now wants updates on Wed - she rung up drs to check availability . So - know how you feel as I still think no but is yet another area of battle. Surgery told dd she could have cc jab next summer when she is 17 no prob. Think yr decision very sensible
21 - feel for you and know what is like - spend time at work sorting out issues when girls are vile to each other - vile is the word!
PAO - hang on in there smile

chocaholic73 Tue 09-Feb-10 09:35:01

PA - sorry your DD is not so good. It is so tough because she wants to do what her peers are doing and she suffers terribly for it. It is a classic example of boom and bust imo unfortunately. My DD has pushed herself a little too far recently - like walking round the shops for 45 mins! - and suffered the day after, not badly but definitely not so good. These are all things they should be able to do without having to watch what they are doing and it is sooo hard when they can't. Hope she is better today.
Re immunisations - I think the tetanus may have been another trigger for DD, she had it in the Feb before ME hit in the April. She should be offered catch up for the CC one this year according to her dob, but think we probably won't. She did have the swine flu one though, she has asthma and there was a lot of SF around at the time. Apart from a very sore arm for 3 days she was fine.

Just lost a long post (ggrrrrr!!) So just a quickie....

Thanks for the posts.

DD was able to walk again yesterday. Roll on next week (half term here, not sure if everywhere is)

Hope DDs are all ok. Keep those chins up! grin

twentyoneagain Wed 10-Feb-10 13:23:30

Positive your DD's recovery from a crash is much better than it was, if she is up and able to walk that is such a good thing. Yes half term next week, definitely looking forward to that and think DD needs some breathing space away from the dramas at school. It is hard to know what to do re immunisations - but I do remember DD had a flu jab in the midst of her illness (flu had started this) and she crashed worse than ever afterwards. Everyone is different and each case has to be looked at on its own, there will be pros and cons to consider. Hope all is well Optimistic.

Hi to everyone

optimisticmumma Wed 10-Feb-10 17:01:29

PA - sorry DD is bad atm. But...she has bounced back to a certain degree very quickly so that's great!
Managed to persuade DD to postpone HPV jab until Sept even though we had a big row first!! LP trainer very good and said that if she wasn't 'doing' CFS ( sorry - LP speak!)then it would be fine and she was no more likely to react than any one else,but I just had a gut feeling not to do it. Just call it mother's instinct I suppose.

twentyoneagain Thu 11-Feb-10 14:31:32

I think that if someone is perfectly healthy then jabs are ok, but any doubt and they should be postponed and you have probably done the right thing OM. We should all follow our instincts more often.

katsh Thu 11-Feb-10 14:37:33

Hi all. Positive - how is DD today? I hope that she is still coming up from her dip. Optimistic, sorry you had row with dd, but sounds like a good decision. There is no point arguing with mother's intuition! Dwardle, 21, Choc - hope everything ok as it can be for you all.
Thank you for your encouragement to appeal the DLA - I have just posted off my 5 page reasons document. It just took some solid concentration to get it done. I am, however, still amazed at how angry these things make me . Why can't the person reading the form realise that dd is a million miles away from a "healthy" 7 yr old ? Anyway - tis done smile.
I had an amusing experience yesterday, in retrospect anyway. My GP had given me a counselling referral back in July, and I got my 1st appointment yesterday. I thought I'd go even though I am much more together than I was immediately following dd's diagnosis which is when the referral was made. Well, I won't be going back - the counsellor was so busy telling me about all the people she knows with CFS, or the friends of friends who have known someone who had it, that it got to the point that she would ask me a question and then interrupt me to tell me another of her stories grin. Thank goodness I was feeling robust enough to cope.

It's this weekend I'm going away to see my parents, so I've quite a bit to sort out to manage that and I really must go do it!
Hope you all have a good weekend and half term.

chocaholic73 Thu 11-Feb-10 15:01:12

Katsh ...it seems to me that nearly everyone you meet knows someone who knows someone who has ME and then proceeds to tell you how that person is doing fantastically...but a professional counsellor doing this really takes the biscuit!! It's really great that you were able to keep it all in perspective. Hope everyone has a good half term.

dwardle Thu 11-Feb-10 22:01:21

Message for OM but everyone really!
I could really do with having a bit of a discussion about aspects of LP and my stubborn daughter but it would not be appropriate on this thread .confused
Feel it would not be fair on those who have not done LP.
Would the answer be to have another thread just on LP?
Advice pleasesmile

katsh Thu 11-Feb-10 22:03:26

You know that if you have another thread we'll just come over and read it wink

dwardle Thu 11-Feb-10 22:50:54

This is true!

nickschick Thu 11-Feb-10 23:49:22

Hi smile - can I come in?

Oh Dwardle I would definitely hop over and be nosey! read it. Being someone who regularly contemplates LP, I want to know ALL aspects. Good and bad.
On the other hand, if you dont want us all reading, then I understand.

How is everyone? Hi Nickschick.

DD spent 15 minutes yesterday telling me that she is now 100% well, that she is not ill and can do everything she wants to do. hmm This was while we drove to a shop, went in and bought a couple of bits then straight home. Out for maximum 30 minutes. By which time her legs were jelly and as soon as we got home she was crashed out on the sofa moaning that the cat was breathing too loud!!! hmm hmm A sure sign that she is truly well - I think not!! Did not recover for the rest of the day. We have certianly gone back to the boom and bust, but it is so hard for her when she wants to be a normal teenager for a short while. Oh no I can hear Mrs CBT. I really cant let her be proved right! Thinking I may have to revert back to the red and yellow energy counting. BUT I dont think i would get DD on side now. SO hard! Sorry for rambling......

Have a great half erm everyone.

twentyoneagain Fri 12-Feb-10 14:00:38

Dwardle, I agree with Positive and Katsh, we are happy for you to engage in a conversation about LP here, if you don't mind us all reading grin.

Welcome back Nickschick it is good to hear from you again, join in when you can .

Positive - it is so very frustrating but remember DD has still improved hugely compared to when you first joined this thread. There will still be ups and downs but she is getting better without doubt. My DD was just like that, always insisting she was better and would not be ill again. It can't hurt to be determined like that.

dwardle Fri 12-Feb-10 19:50:55

gringringrin
dd has been into school for every lesson she had this week!
PA - take comfort - it will happen - totally agree with 21 again.How was dd today? Do you - or dd- keep a diary? Sounds from your thread that her down times are lasting for shorter amounts of time and she is having more positive moments? Did I mention that dd's paed read us her notes from a year ago. I was quite shocked - had forgotten where we were then.
I think she HAS to have times when she is a normal teenager
Thanks for your responses about LP - just did not want to do something that you would not want. Awaiting your response, OM!
Katsh - hope your weekend goes okay
Hi Nickschick.
Very shocked shock shock about your counsellor, Katsh - but a huge well done for putting in the DLA appeal.

nickschick Fri 12-Feb-10 20:17:29

Hiya ....thanks for welcoming me back smile.

Everythings still the same here some ups lots of downs but ds 'thinks' hes managing better bcos he might manage 3 days in school but he comes straight home and sleeps until 9 can barely move and even has had to resort to eating cheesey mash in his bed bcos he cant move or even muster energy up to eat....then he might be able to manage a bath then hes back in bed until 7.15am sadsomedays school ring and we have to collect him.....this isnt living,this is half managing and im afraid its only gonna get worse,hes cut off his friends and will only chat on occasion to friends on msn.

optimisticmumma Tue 16-Feb-10 09:06:00

Dwardle - I am so sorry not to have responded but was away for a few days with no computer shock! I don't mind discussing LP on this thread if everyone else is happy about it! Ask away - although I am away from Wednesday to Saturday which is entirely unhelpful of me I know!!
I will keep checking the thread today though and see if you're on!

Nickschick - it's so nice to 'see'you again although your post made me so sad.I know precisely how you feel.What school year is DS in? I'm sorry i can't remember. Unfortunately, CFS/ME seems to be a vicious circle until you break it, but you know he will get better. If he's managing three days at school that is good you know. We ended up doing LP because at the end of year 9 the school quite rightly said that my DD could not go forward into GCSE coursework etc without proper provision. They wanted her to have home tuition and that takes a while to organise. She was so horrified that, having been fairly anti LP, she had a complete change of heart. Anyway the rest is history!

A couple of things I keep thinking about is that 75% of people with CFS/ME make a complete recovery in time. Secondly Dr Crawley mentioned to us that she thought that in 5 years time CFS/ME would be broken down into more that one illness. The consultant at GOSH siad that moderate ME takes 2 years to recover from. Those little nuggets are intended to make everyone feel better!!!! Apologies if they don't!

My feeling is that it took my DD 18months to shift symptoms ie headache/pain /temp etc and that after that she was left with what I call emotional fallout. She just couldn't 'see' how to go to school without feeling ill etc. She had lost all confidence in her physical self. That is where LP came in and which is why it can be described as enhanced CBT and why CBT can work well too. Now, if she has any illness/stress etc she uses the skills she learned on LP to deal with them if she can. This doesn't mean she has a perfect, problem-free life it just means it is a normal one with all its ups and downs...

Oh dear! I've given a bit of a lecture haven't I? Please take it in the spirit it is meant - one of care and concern for all the DC on the thread.

have a restful half term ....

I hope you are all having a good half term break.

We are majorly doing the boom and bust here. How do you tell a stubborn determined teenager that she cannot do what all her friends find easy!? sad

Yes she does bounce back quicker than before and yes we are far better than for the first 6 months of 2009. I must keep telling myself this!! The future scares/frustrates me though....

Dwardle Please come back and ask those LP questions. I am interested to know the good and the bad.

dinamum Thu 18-Feb-10 16:29:27

I pop in here now and again and it just reminds me of those dreadful days.

Nickchick reading about your poor son - I know just what it feels like for him and PA the telling yourself you are better now and then collapsing for the fext few days been there done that!

Re LP for me it was certainly what turned things around. I was at the crashing stage and had not got out of bed for 9 months and not sat up for 6 months when the practioner came to my house. She talked for an hour (I had not talked to anyone for that long but was able to do it). Gradually doing LP I was able to get out of bed - it took me 10 days ( but I have always been a slow starter!) and went to the seminar 3 weeks later. I think it took me longer as I was very very anxious to avoid a crash.

I was very sceptical and to be honest it did take me a while to get the hang of it but each time I did it I began to see the benefit. Sometimes I did LP in anger almost to prove the LP practioner wrong and that if I did what she said and would still feel rough however the outcome was that I felt better!

For me I learnt that the times I did not want to do LP were the times I most needed to do it. Can I say that I found it boring and felt that (by this time I had been to the three day seminar) that talking about it and paying the money should be enough to get me better!

Eventually after about 8 months after the seminar I realised that despite myself I was getting better and that even my half hearted attempts where helping. So then it clicked for me and there was no stopping me.

However I do still fall into old patterns of thinking and behaviour but I recognise it deal with it via LP (and do not get ME symptons)

I know it is hard to do and it is like getting fit just buying the fitness DVD is not enough you do actually have to do it but over time you see the benefits and it is great.

I do wish all of you well and that you DC could get better NOW but honestly if I did it they will.

PA do think about the future - there is a future and it will be great . My dr said to me that my life would never be the same again and I had to prepare myself for this, rubbish, honestly it is getting better and better all the time. I really could not imagine that when I was lying in bed unable to talk or eat.

Thank you Dinamum for your lovely post. You have made me cry after a very bad day with DD3.

Always tomorrow....

twentyoneagain Sat 20-Feb-10 13:39:03

Positive - so sorry you are having a hard time and that DD is suffering so much. I know I wept buckets at times over DD and here are some (((((hugs))))for you. Dinamums post is lovely and it helps to hear from someone who has been through this and understands exactly what our DCs have been feeling. Are things any better now?

Thank you for the ((((hugs)))) 21again.

I just popped on to post that DD is having a good day. She went out last eveningshock for nearly 2 hours and is still goodish today, which is great!. grin

I thought I would come on here and post that, just so that I am not always posting when we are down! smile

We had a good long talk today about her future plans and what she may be able to manage, too. She was a bit down about the fact that she may not be able to do her course due to lackof qualifications and experience. I think I may broach the subject with the education unit of her not particularly increasing her time there too much more, but instead using her time increase to get some experience in the area she wants to go into at college. She is not doing any exams in June, so it is not as if we are losing out study time.

Have a good weekend everyone. smile

twentyoneagain Sun 21-Feb-10 10:36:38

This is so good Positive - DD is improving and she is getting used to feeling better. The steps she will be taking will be getting bigger all the time. One thing I found helpful when DD started improving like this was to change her bedroom round a bit. We bought new linen and tried to change it from being her "ill" room to a fresh new place - just a thought . It sounds like a good idea to talk to the unit about her time there. Sorry if you have already mentioned this but what does she want to study?

dwardle Sun 21-Feb-10 11:40:25

Hi everyone - good to read everyone's posts and esp pleased that you had a good day, Positive.
Dinamum - I found your post SO helpful and have been thinking about both that and the other posts.

My qs about LP were to do with thinking in the first instance that if dd had still got symptoms and difficulties, then she had somehow failed at LP. Now, having read what OM said and Dinamum, I feel that a whole different slant needs to be taken - I am waiting for the right moment to get dd to read these posts because I think she has sort of given up on LP because she was really struggling. OM's post really helped here too. I did not want to post because I did not want to seem like I was questioning LP - I am not at all - and remember I sat through the whole programme with dd. Now I see that dd just needs lots of support to continue to use LP on her troublesome areas - which is a feeling of being overwhelmed.

I sometimes wonder if we should have pulled dd out of school altogether and taken this stress away - but then I look at her. She has had a great week, completing course work, working on her art exam, spending hours on facebook/msm and doing all the other things that a teenager does and I am sure that we are on the right track and so nearly there. She has been very excited about A level selection and talks about it as a given - she will be in 6th form. So I think that we are treading a very narrow path BUT we seem to be on it still. She is so much better than a year ago. I know you will all understand this phase as you have all described it at some point in our threads. Positive, so have you, even though you may feel you are less far down the path than some of us.

So - my big Q is - how do you get a dd to keep applying LP even when she is somewhat reluctant to discuss it? I do not want to nag her, she does not want to contact her practitioner and she does want a life she loves!confused

21again - agree about the bedroom too! This really helped, esp as dd did some of the work and all the planninggrin Not too costly. I love IKEA.

21agin - also agree about the weeping buckets. I longed for a 'normal' week - and got my wish just before half term when dd went to school every day and nothing went wrong all week!
Now I know it can happengrin

Big hugs everyone and thanks for wanting to be in on the LP chatssmile

twentyoneagain Sun 21-Feb-10 13:00:45

Dwardle - I know exactly what you mean and getting your DD to read these posts may be a help. I wish my DD had learned some of the skills that LP teaches, I feel sure that she would be able to benefit from it to deal with issues that she has now. I am actually seriously considering learning about NLP myself .

optimisticmumma Sun 21-Feb-10 15:10:43

Dwardle- just caught up on the posts and tbh there is no answer to your question without a bit of a 'row'! My DD is also sensitive about discussing LP but I just kind of sya 'what about doing LP?' and then run!!!I think that's all you can do. HTH

dwardle Sun 21-Feb-10 17:46:14

Yes it does help - glad it's not just me who sometimes has to take cover! Also v useful to know your dd is a bit sensitive about it too!
Thank you!grin

nickschick Mon 22-Feb-10 23:32:20

Hi there - we went for our usual round of blood tests again .....the nurse who took them asked me if we needed a wheelchairsad cos sam looked so poorly....after speaking to dh she thought he had leukamia.

She was really surprised when sam said no he always feels tired but today was a good day for him ....she then asked us what was a bad day like shock.

Sams in year 9 and supposed to be doing gcses early - i dont see it happening.

We are waiting for referral to a physio and the paed said shes going to investigate getting a 'fatigue specialist' to look at him.

We dont do L.P or any other form of monitoring his energy (we havent been taught and hes v anti cfs)so i do say things like 'think about it'etc etc.

I dont know about the 2 year thing hes been like this for at least 5 years.

hope everyone is staying on an even keel.

chocaholic73 Tue 23-Feb-10 11:24:06

Nickschick - have you thought about asking for a referral to Dr Crawley. She does home visits anywhere in the country. It is a one off but it really got us started on pacing and got DD out of bed (at the time she couldn't walk at all) and slept in our front room. I think she is able to put it across in a way you possibly couldn't. I don't think with your DS being so much in denial that you could possibly do LP, Perrins or anything else as you do need co-operation!! ..but a 1 off visit from Dr Crawley who will then talk to your local people might really help.
Hope everyone's having a good day.

dinamum Tue 23-Feb-10 15:53:11

Nickschick I don't want to disagree with chocaholic but your son could do LP without admitting he had ME or CFS. Does he admit that he has energy issues? Then that is enough for him to get taken on the LP. You might find it works better for him as he is not wrapped up in the whole physical aspect of the illness eg it is a virus etc.

If he is open to try a harmless technique that may enable him to have LP that is all he needs to go ahead.

nickschick Tue 23-Feb-10 18:31:40

Theres no way in this world hed see somebody the paed referred us to 'reflections'(im not sure if thats just what we call it its CAHMS I think -to do with counselling) and ds flatly refused it.

To be honest im not convinced entirely that L.P is for us - I know a lot of you have had amazing results but after discussing it with my GP and others I dont even think if I was totally 'into' it it would work for us,partly because Sam isnt 'open' and I dont think dh would be supportive.

I dont know where we will go from here -the next lot of blood tests will help us decide and maybe the 'fatigue' specialist will come up with something.

Hope you are all having a good week.

DD3 has been good here. Not crashed as much as we anticipated and has made it into the unit both times this week. Legs a little wobbly today, but on the whole the best few week for 20 months! grin

Having a total panic though as DD2 has been diagnosed with glandular fever, which was DD3's trigger for CFS/ME. Dr has been brill, yet again, and had already thought about why I might be slightly panicked about this. He reassures me that DD2 has been the worst case that he has seen, so we would not be that unlucky again! My head says it will be fine and she will be well in a few weeks - heart is a different matter and I really could not face all this again!

I will try and listen to my head!

Very interesting reading all the LP bits and pieces. Keep them coming. I dont think we would end up going down that route, but just some of the little snippets I pick up are good theories and I can see the benefit in them for DD3.

Must dash, tea is ready. smile

dwardle Wed 24-Feb-10 20:03:57

Good news about dd3, POA - yikes about dd2shock I'm for going with your head at the moment! Send you big cyber hugs too.

dd Has had a couple of setbacks this week but shock has met them with solutions and 'I cans' rather than I can'ts! This is a major step forward and part of the LP toolkit! Am very pleased with her and have told her so.
Still feel that explicit praise for successes is very important for all our dcs. Am sure you have all been doing it toosmile

Nickschick - how old is yr ds?

optimisticmumma Wed 24-Feb-10 21:11:52

That's fantastic, Dwardle!! My DD is looking awful but there's no talk of her taking days off! She's just putting one foot in front of the other. She has been at school until 5.30 every day this week doing coursework that can't be done at home. I think your DD has turned a psychological corner in that she is putting into practice what she has learned!

PA - go with your head! You poor thing, how unlucky to have glandular fever again. I'm sure your doctor is right....

Lots of love to everyone else....x

dwardle Wed 24-Feb-10 22:12:40

Thanks optimisticgrin
Will your dd get a respite when coursework is over?

optimisticmumma Wed 24-Feb-10 22:43:39

I hope so, dwardle. I am trying to be as supportive as poss with offers of picking her up etc. (She goes to next town by train. It's about 10mins on train and 10 min walk).I just hope she is OK to attend her DofE training day on Saturday. When I think about this time last year I can'tbelieve I have just written that!grin
DD reaches her first anniversary of doing LP next week!shock

nickschick Thu 25-Feb-10 23:17:20

op mumma your dd is doing well.....grin.

Dwardle I agree with the praise thing I try and find good in every bit of the illness even last week having bloods I was saying to him we are so lucky to get this done any little thing will show up we wont have to wait for you to get symptoms if theres something wrong we can find it and fix it.

P.A ds had what we suspected was m.e had lots of blood tests nothing showed up then he worsened to quite an extent so more tests were done (18 months apart) then glandular fever infection showed upsad....so to my way of thinking its likely ds had m.e then got g.f on top thats why hes been so poorly for so long.

My ds2 is 14.

Hope everyone manages to enjoy their weekend.

Ive been taking some extreme steps to avoid ds2 becoming too tired such as not going to the yearly fair sad but understandable....encouraging rest even when ds seems ok, stopping friends coming in quite so often so he doesnt have to brave face it.

optimisticmumma Fri 26-Feb-10 08:35:54

Keep going, Nickschick, it won't last forever...If DS won't go down the LP route have you tried seeing a herbalist? We saw Jo Dunbar who did seem to have success with the physical symptoms. As far as LP is concerned I do think certain DC (My DD included) have to be fairly desperate to do it and I think 14 is pretty much the minimum age to 'get'it.

optimisticmumma Fri 26-Feb-10 08:45:56

Sorry Nickschick - just read your post about LP properly blush . I just want to say if you don't mind, that it is not in any way wacky or weird! It is up-to-date brain science! IMHO GPs don't have a clue about LP and not much of one regarding CFS - sorry if that sounds hard, but unless your GP has actually attended LP training he can't really comment and may be putting you off something that could be beneficial to your DS.

nickschick Fri 26-Feb-10 10:05:48

Nooooo I dont think its wacky and nor does my G.P,He has actually looked into M.E a lot more as his only experiences of M.E were when he was a medical examiner for the dhss and people would claim they had M.E yet live in perfectly co-ordinated homes where everything was just so and they lived alonehmm....not saying people with M.E cant be colour co-ordinated or anything but the people he saw obviously all had other issues going on as well.....so for him to have ds2 diagnosed and so young of he finds it 'interesting'.

The G.P said that for people to benefit from L.P they have to recognise they are 'ill' and want to get better and be willing to believe that L.P can help them,firstly ds isnt in any place in his mind for that so secondly no good practicioner<sp> would engage him with it.

With LP ds2 wouldnt benefit bcos he isnt open to any sort of help,Dh wouldnt be very supportive and until he can believe he is 'responsible' for 'spending' his energy nothings going to work fast.

optimisticmumma Fri 26-Feb-10 10:18:54

Oh, fair enough then!!grin Sorry if I came over a bit stroppy...sounds tough for you sad.Boys! eh? I have 2 of my own and maybe they would be the same.
Have a good rest of the day. smile

nickschick Fri 26-Feb-10 21:12:05

noooo not stroppy at all.

If you know somethings worked for you then your right to urge others to try.

smile,I appreciate any advice and support.

twentyoneagain Sat 27-Feb-10 08:58:52

Hi all, haven't beeen around much lately but have caught up with your posts now. Glad to see things looking up for Positive and Dwardle. Good to see you back Nickschick.

DD is struggling and this is a really hard one to deal with. She is experiencing problems with three of the girls at school who up until a few weeks ago were her best friends there. They are now ignoring her and excluding her and she is so unhappy and finding it cvery difficult to deal with. I know she should move away from them and establish other friendships but she seems unable to do this and is not coping at all well. She doesn't know what triggered the problem (or so she tells us) but I am worried about her. She is very down and has two exams next week which I think she will not find easy to deal with. Any advice would be much appreciated, I think we will have to get involved but how do you deal with this? We don't know the parents but on one occasion I had to leave a message for one of them and never received an acknowledgement or response which makes me think they probably won't be too bothered. It is easier to deal with when they are smaller I think, but DD doesn't want us to become involved although, for the sake of her health I think we have to.

What to do?

OH 21again, I feel so sorry for your dd, who has come so far and done so well. This does seem to have been going on for a few weeks now. I really dont know if I can be of any help. It is bad enough when a "well" dc has friendship issues, but I know I take everything so much harder with DD3, after all she has been through, so I understand your concern.
DOes she have a personal tutor at school that you could contact? Maybe she/he will have an idea what is going on, or maybe she/he could have a quiet word with your DD and she may open up more to someone else about the root cause and it can be dealt with. If she knows what has caused the rift, then it is easier to get it sorted. I have always found the personal tutors to be really understanding and even if they dont know what is going on, they have always been positive with my DD1 and helped her cope with these issues. (She did not have CFS/ME, but was a very sensitive girl) Girls can be absolutely HORRIBLE and sooooo hurtful to others.

Sorry, not much help I am sure, but I hope it is soon sorted and your DD can do the exams this week without worying about these girls.

Good luck smile

Here DD continues to do very well - for her! She is going to the local college to have a look around on Monday. She is soooooo determined to get there and do a childcare course. We are going along with it all at the moment, but have doubts that she will be well enough by September. We do not want to be negative with her at all and so are letting her do all the preparation, but have a "back-up" plan if all goes belly up!

Hope you are having a good weekend.

nickschick Sat 27-Feb-10 17:32:42

My ds2 can be quite unforgiving when it comes to friends and although hes a very popular kid he has a few friends he keeps close to him,I think when a child is ill as ours are and tiredness and exhaustion is just the 'norm' for them the regular ups and downs of friendships become a more intense feeling for them.

Girls I know can be very bitchy and I think to veer from the norm in any way be it healthwise or dresswise or any other way makes you stand out and kids like ours dont want to stand out.

Your poor dd x

Positive attitude - thats great your daughter has an 'aim' and I can perhaps advise you a little if she takes NVQS she can do these for as long as they take her to complete.

dwardle Sun 28-Feb-10 13:12:11

Oh 21again - really feel for you. Totally agree with Positive's advice. At dd's school, it is her form tutor - but you will know who in your dd's pastoral system.
Think of it from school's point of view. If you dd has a problem, that may affect her learning that they Might be able to help with, would they want to know? Answer is YES! (well, usually, I hopesmile
Also was thinking about teenagers in gen. Although they think they know everything and tell us what they will and won't do/allow/permit, we are still the parents and have the experience, the bigger picture and the 'strategic overview' for want of a better phrase. So, sometimes, and very carefully, we may want to say to them 'I know what you think, but on this occasion, for these reasons..........'! So, you may have to get involved smile

Positive - do you know about NEETs?
They are post 16s not involved in employment, education or training. There are local level targets for them and LAs want to avoid them at all costs! So - if anyone puts up a block about your dd and her post 16 activities, you may want to ask them if they think she will end up as a NEET - because they would not want that, would they!!!
If your dd is not up to it because of her health, then I think but do not know that they ought to be able to negotiate something.I think they may have a duty to meet her needs - because otherwise she risks bee#ing a NEET. Does the college have an SEN & Disability policy? Hope this makes sensegrin

Hi 21again - How did it go today? HAve you managed to get any further with DD and these "friends"?

Dwardle - firstly thank you very much for your info. This is whatn I am so desperately trying ot avoid (and panicking about) I didn't even know it had a recognised "name". <<<Thick question alert>>> - If I ask questions about her being a "NEET" do I say "neat", or N.E.E.T. If I ma going to pretend I know what I am talking about, I dont want to look like a right wally!! blush

DD has received an interview letter today for the childcare course at the college and also went there today to have a look around with her connexions guy. She was there for just over an hour and was shown a few places, but did a lot of walking and is now absolutely wiped out (and very grumpy!!!). The interview letter says that it will take 2 and a half hours. I dont know whether to phone up and explain that this is going to be rather difficult for her, or leave it. If I phone they might think I am being an interferring, over-protective mother. If I leave it, she may not get the place if they think she is not taking an interest and being lazy after the first hour?
What would you do?

I hope everyone is having a good day. smile

dwardle Mon 01-Mar-10 17:01:27

Just a quick answer to PA- could her connexions guy mediate re the interview? I think this is a tricky one but there must be an answer. could you ask the people at the centre?
You say neat by the way! Not a silly question. Will try to find out a bit more and forward you a link!
21again - how are things today?

Thanks, good idea. I will do that tomorrow. Neat answer grin!

twentyoneagain Mon 01-Mar-10 19:44:13

Thanks for asking everyone, DD is better tonight as one of the "friends" was away and it seemed to make all the difference. That at least gives us some ammunition to work with and makes a bit of sense. I wonder if she sees DD as a threat as DD and one of the others have been selected to do several sporting events together and other girl didn't get through. We will have to see what tomorrow brings. DD had a history mock today and maths module tomorrow, fingers crossed. She has dealt with so much that this setback just seems really hard for her.

Positive, Dwardle's idea of mediation from the connexions guy may be the answer. Well done to your DD today, hope there's not too much fallout.

21again - I hope the maths exam went ok. And I hope that having a good day yesterday means that the negative cycle has been broken and your DD will feel more confident even if the other girl is around. Surely, if the others spoke to your DD when one was away it shows that they hold nothing against her. Is the one that was away a bit of a ringleader? ANyway, I hope things have been good today.

I emailed the head of the education unit today about the college situation and I am waiting for a reply. DD was quite excited about being called "NEET" until I told her what it meant. grin
Far less stressed today after a nightmare evening yesterday. Boyfriend round, so all smiles tonight! grin

Hope DCS are having a good week.

optimisticmumma Wed 03-Mar-10 09:05:52

21again - hope this week is proving better for your DD. I agree entirely with PA and Dwardle regarding the personal tutor. Even if things are getting a bit better I would still have a chat. Your DD doesn't even need to know if you ask them to keep quiet! I'm afraid I always go for the sleuth option as it usually avoids rows! I got DDs tutor to track her round school to see if she was included in groups and to track her general wellbeing. It was reassuring. It sounds like the girl who was away is the ring leader but that doesn't necessarily make it any easier if the others won't back up your DD!
I do think you must try not to worry overly. Teenage girls are not nice and all our DDs have to learn to be resilient and to know when to ditch the meanies and move on. DD had a similar thing recently where a friend was v. moody to her and another girl. When the other girl asked someone else she said 'oh so-and-so's other friend doesn't like DD and DD's friend'! Now I can't even keep up with what I am writing and it doesn't make sense but suffice to say my DD is being disliked by someone who doesn't even know her. Luckily she shrugs her shoulders and seems to be manageing not to take it to heart. I would have been devastated!
PA - I'm sure your DD is NEAT!!

OM - Hopefully not a NEET, Bedroom definitely UN - NEAT, but yes, dd is quite NEAT, me thinks. grin

optimisticmumma Wed 03-Mar-10 13:26:31

grin

dwardle Wed 03-Mar-10 19:24:59

Ho ho ho!
Hope all are okay - Katsh - you have been very quiet- how was your weekend away?
Slow progress here but it is progress - dd not feeling brilliant but IS getting into school and is well on with the work for her art exam.
Here is a link about NEETs - good as a starting placewww.dcsf.gov.uk/everychildmatters/Youth/ypnieet/neet/
My dd is not at all neathmm

dwardle Mon 08-Mar-10 20:36:34

Hello - is anyone out there?

optimisticmumma Mon 08-Mar-10 20:39:28

Hi Dwardle! how are you doing?

katsh Mon 08-Mar-10 22:14:17

Hi, sorry for not being around for a while - just haven't quite had the focus to post, and didn't want to just do miserable posts. Both dd's have had birthdays - good but hard when both are not as well as they once were. dd2 is still doing quite well, and seems to be at least levelling out if not moving upwards. My dd1 who has a nasty nerve disorder is really struggling at the moment, so I'm finding that a bit difficult. I'm just tired out. I'm sure you all know that feeling smile. Thanks for asking about my weekend away Dwardle. DD2 survived with her dad and brother - a bit tearfully but ok. I had a good time with dd1 and my parents, although found my Mum in v. poor health so tricky from that angle too.
Nickschick - how are things? Sounds very tough for you all. Hope things are ok with everyone else.

Hello Katsh, great to hear from you again. Yes, I know what you mean about being tired. Keep going, it wont last forever and hopefully things will really start to get a lot better for your DD. Sorry to hear about DD1 being poorly too. Life is so unfair sometimes.

Here I feel like shouting BUGGER, BUGGER, BUGGER, but of course being a fine young hmm lady I will say, Oh Dear, Oh Dear, Oh Dear!!!! DD3 went to the college today for a look around and a chat with the support lady. She came home and promptly burst into tears because she hated it! She now doesn't want to go there and thinks being NEET seems like the only way to go! I think she has been a bit exhausted today by going up there, so I ma hoping that it is her tiredness talking and she will be persuaded differently tomorrow. She is one stubborn girl though and I could have an uphill struggle on my hands! (Who said, like mother like daughter!!!)

Hope you are all doing ok. smile

dwardle Tue 09-Mar-10 18:16:09

Hi everyone
Good to hear from you Katsh but sorry your dcs are not great. I know the feeling about being tired out! Hi Optimistic!
Positive - oh no! After all that she didn't like it. Was it the size, the people or what? I bet you want to scream.
As I do - dd is struggling with a headache since yesterday am and has missed lessons yesterday and today - though she did manage a maths exam yesterday! She is so up and down yet managed to get an A for some coursework for a text she had missed ALL the teaching on. Great school support helped her to catch up and a mother with a whip to make her work! Now she is not so good. Oh well - remembered what it was like 1 year ago and no comparison really so I shouldn't complain!
Katsh - any news from DLA?

twentyoneagain Sat 13-Mar-10 09:44:43

Hi to all - haven't been around as I came down with the most horrendous stomach bug last weekend and really only felt well yesterday.

Katsh - so sorry things are so difficult at the moment, you must be feeling overwhelmed by it all and probably working on auto pilot right now. Try to take care of yourself, but it is difficult as your DDs are so much younger and need you to do more. I am glad that things are levelling out for DD2 - that at least is one positive for you.

Dwardle - DD has done so well and should be really proud. You are right - a year ago she was so ill - you could never have envisaged her doing so well now. Take heart from this, she is improving all the time and the Easter break is looming which will be good for everyone.

Positive - Has DD said anymore about the college visit and is she feeling any better about things?

Hi to everyone else .

DD has been off school since Monday feeling sick and dizzy, simply a reaction to the stress of the last few weeks. We have spoken to school and are hoping the situation will start to improve. She can cope with sport, exams etc but obviously we are going to have to concentrate our efforts on helping her with confidence and self-esteem issues. Sure we'll get there in the end .

Hi 21 sorry to hear that you have been feeling under the weather too. I hope DD manages to bounce back a bit this week and return to how she had been. She has come such a long way. Has the situation with the girls settled down?

Hi Dwardle, how are things your end? Only a few more weeks til Easter Hols. I hope the exam stress is not seting DD back.

Hi Choc how are things going with your DD now? I would love to be nosey have an update.

Katsh I hope you are managing to get some time to yourself. It sounds as if you really are having a bad time of it all round at the moment with so many things going on.

Hi Nickschick and Dinamum and OM. Hope you and DCs are doing well.

Here I am beginning to see how powerful the positive atitude can be. Since Tuesday when DD went to the college and came home distraught she has crashed terribly. For the first time ever she has been saying that she is not well enough to go to college, to keep up with the work there and to just be able to go there for the course, which is actually just 12 hours a week. - I say just, but she is only just managing the 3 hours a week at the moment, so perhaps it is me being unrealistically positive now. We have always had to watch that DD does not expect too much from herself and do too much and now all of a sudden we are the ones trying to get her to think positively. We have had the wobbly legs again and she was unable to walk yesterday, although has managed to stumble around holding furniture today so far. I have arranged a meeting with her education unit head on Tuesday, so I am hoping for a plan that she is happy with. She is no longer quite so adamant that she will NOT go to the college. I think that could have been her going into panic mode about not being able to do it.

Anyway, I hope you have all had a lovely Mother's day and all been spoilt rotten. Choccies, flowers and wine tonight? Breakfast in bed and luch out at the pub? No me neither, but there we go!! grin

twentyoneagain Sun 14-Mar-10 20:28:52

Oh Positive - I am so very sorry that DD has crashed in this way. It shows just how delicate the balance is, and how easily an upset can change everything. You are so right about the power of being positive, we all know this is so but when it comes to putting it into practice it is not always that easy (goodness knows I am the last one who should be advising on this!!). Your DD has come on a long way and there will still be ups and downs - look at my DD at the moment - but she will recover more quickly and hopefully feel better about things.

I actually spoke to another Lightning Practitioner this week. She was really good to talk to and advised that LP isn't just for M.E/CFS, but can be used to help a huge number of problems including positive thinking and confidence boosting which is what our DD needs. We are certainly thinking that DD would benefit from something along these lines (whether LP or not).

Hi to everyone and I hope you all had a happy Mother's day .

dwardle Sun 14-Mar-10 22:42:12

Oh dear - send both 21again and Positive huge virtual hugs and sympathy.
Cannot post much tonight but I REALLY think LP is worth looking at - does help re attitude and capacity to cope. Cannot post much this week but will be around later in week if you want to chat more about this. DD is coping - just and hanging on by fingernails - but was prompted to remember that this time last year, had to work at home as things were so C$£* Sorry - lurched into bad language!!! So - things do go up & down but do get better.
Have a good week allsmile

minimu Mon 15-Mar-10 18:06:03

Hope things aren't too bad with your DC's.

Just for interest Dr Crawley has been given funding for trials using LP
link

Great if some of your DC's could be involved

Thanks for that Minimu. I will look into this with my paed. We are currently under he care of Dr crawley too. Its not starting til September though. I was hoping to be all well and fine by then, but there you go I am positive again... grin

twentyoneagain Tue 16-Mar-10 08:44:26

Thanks Mimimu - that's really interesting. Will watch out for the results of this one.

DD had a better day yesterday and was so much more lively again.

How is your DD Positive - and of course all the others here?

Chocaholic73 Tue 16-Mar-10 19:55:27

Hi All - interesting to hear about the Dr Crawley/LP trial - will also watch that with interest. Have skimmed the thread, sorry there are a few ups and downs at the moment. The same for us here, DD had a very bad cold a few weeks ago (which Perrin lady said was good). It hasn't really cleared up though and I suspect she now has sinusitis and is feeling a bit rough. Having said that she has had a number of outings and got an "A" in her 1st Maths AS module so things aren't bad at all! I found a lady asking about her Y11 with CFS/ME over on General Health who is getting poor medical advice and support by the sound of things. Her name is Griffpop I think ..have directed her over here ..so look out for her. Must dash ..will try to be a bit more regular!

Hi Choc. Sorry things are a bit up and down for your DD too now.

Had a meeting at the education unit today which turned out to be quite traumatic. I think we are getting to the bottom of DDs aversion to college though. SHe is petrified that she will not be believed again and treated badly like she was at the school. At least we can now work on that and try and get around it. SHe is supposed to have an interview on Friday which lasts for 2 and a half hours. No way will she be to string two words together at the end of that time!
Anyway, a good day today. We went for lunch after the meeting and she is still well enough to sit and watch tv with boyfriend this evening.

Hope you are all enjoying sunshine! grin

katsh Tue 16-Mar-10 22:18:48

Hi all - sorry to hear of the dips going on elsewhere. We have enjoyed the sunshine and dd has ....drum roll.... ridden her bike in the garden for 3 afternoons in a row !!!!! I can't quite believe it - she's only 8 and a year ago bike riding was a major past time, but it's been 11 mths since she's been on it. She is starting to gain some confidence as well as having a bit more energy. She even coped with falling off it today - a bit of a cry and then back riding again. She's been having home tutoring for 3 weeks now and I think that that has really started to make a difference to her confidence. I think it's so hard for our children to cope with the illness and then as they start to recover to have to re-start so many things again. I'm definitely noticing that one of the greatest causes of fatigue in my dd now is anxiety. I really hope positive that your dd can keep building her confidence and that the college will be wonderfully understanding of her situation.
Isn't it great winter is ending : )

optimisticmumma Wed 17-Mar-10 15:57:11

So pleased that you are sounding so much more positive Katsch! I do think the warmer weather helps!
Well...I rang Bath today to see if we could be of any use to the trial re Dr Crawley/LP. It is going to be a randomised trial with new patients. Some will do usual stuff (I suppose pacing etc) and some will be offered LP. The woman I spoke to sounded concerned as to whether this approach would work! I have to say I think I agree to an extent in that if you are on the trial will you give LP a proper go?? Anyway we offered...but I think they are looking for new recruits! PA with a bit of luck your DD will be in the group and then she'll have no choice!!
Well done to your DDs results Choc that's such good news! She must be v. pleased and you v. proud!
21again - you should look at LP for your DD as it does help with all the anxiety etc etc
Enjoy the lovely day...

OM - Do you mean new recruits to the Bath centre, or new recruits to LP? As you know, we have been under the care of Dr Crawley for a year now. I am hoping to speak with DDs paed about this tomorrow and see if she fits any criteria. Do you think I should phone the Bath Centre about it? If not, i will still watch with envy interest.

Not good today. I am sure it is all this college issue that is causing stress and so making the physical side so much worse. ALthough college have agreed to do a small "interview" with me and DD tomorrow afternoon, rahter than the big interview that had been planned for Friday, which was for 2 and a half hours, with 45 teenagers and 6 staff, with a full on afternoon of activities and assignments for them to complete. Pleased we are out of that one!!!

optimisticmumma Thu 18-Mar-10 08:33:04

pa - New recruits to LP I think! They were very polite but as DD had already done LP they couldn't watch her go through it iyswim so they want people who haven't done it. I think they are worried that everyone will want to do LP and nobody will want to do the pacing/card system but they have to do both to do the research! If I were you I would phone Bath and ask! I'm sure as your DD is under Dr Crawley already you will be in a good place!

Hope all goes well this afternoon. I'll be thinking of you...

OM - Can you tell me where you got the phone number from? I cant seem to find it anywhere. If you arent happy to put it on here can you email me - directioneeded at aol dot com.
Thanks.

Its OK - just found it, ta grin

Just phoned them. Lovely lady. She said that she was under the impression that they would be taking new referrals on to the trial, not people that are further down the road. sad She did say that she would put DD on a list of people who would be willing to take part and pass this on to Dr Esther Crawley, just in case there was any opportunity.
A little disappointing. sad

Also, during conversation I told her that DD was doing really well and how pleased we were and she came back with "Oh back at school full time, that's really good!" EErrrrrr no, just one and a half hours a week. It sort of brings you back down to earth with a bump and shows how far we have to go! sad Not thinking of that, just how far we have come from the 24 hour 100% nursing care we were doing a year ago. We WILL get there.

Hope you are all doing ok.

Katsh - Hope DD is still able to get out in the sun shine and do a bit of "normal" childhood for small spells of time.

Dwardle - How are things?

Choc and 21 hope you are well and DDs are coping with things.

dwardle Thu 18-Mar-10 22:15:11

Arghhh - am in shock. Just got new job!!
DD is going to gym at 8.30 on Sat with 2 friends. Which is more shocking?shock

optimisticmumma Thu 18-Mar-10 22:35:31

Great and great, Dwardle! Tell me about the new job! Another headship? (nosy emoticon)

FAntastic Dwardle on both counts!!! grin

twentyoneagain Fri 19-Mar-10 08:24:20

Dwardle that is so fantastic - well done to you and to your DD. Things are really looking up for you and you should both be feeling pleased with yourselves grin.

Katsh it is great to hear that DD is outside riding her bike, we always found that the sunshine helped DD a lot - one very good excuse to get away during the Summer .

Positive it sounds as if DD is recovering far more quickly now. What is happening about the interview today?

Choc great news about your DD's result, give her a pat on the back from us all.

Optimistic hope DD is still coping with all the coursework. Roll on the Easter hols.

DD is back to her bouncy self this week, things have settled down at school - as they usually do with teenagers - but it does show that we need to help DD to deal with stress and anxiety.

Hi Nickschick - how is DS?

Hi to everyone else who reads this thread - Dinamum etc - it's good to hear from you whenever you're around.

nickschick Fri 19-Mar-10 08:30:30

Hiya smile.

Ive just had a quick read through .....some ups grin some downs sad but nevertheless we are all still here.....

Ds is on his 3rd full week in school!!! great I know but to compensate hes sleeping as soon as he comes home,got to ring hospital today -still not heard from them with regards to last lot of tests.

Hope you all have a nice weekend.

21 - so pleased to hear that DD has bounced back well. Long may it last! grin

Nickschick - 3 full weeks, thats amazing. Pleased for your DS. grin

Now dwardle, the same day that you announce you have a new job I discover that a new head has been appointed at DDs school. Co-incidence? hmm

Right, well, I didn't want to come and whinge and whine yesterday ... and to be honest I was too upset to post anything on here. So here goes .......... The interview was horrendous. It was more of an informal chat about the course, but we came away from it with DD having had all her hopes and dreams for the future crushed. No way will she now do that course. She has had to re-think the career that she has wanted to follow for the past 10 years - childcare and basically back to the drawing board as to what she may do next year, or in the future. I now feel slightly more relaxed after making some phone calls today to some organisations and asking if they would EVER consider employing someone who had no qualifications and had no proper schooling after year 9, with dyslexia and dyspraxia to boot!! Encouraged by not being laughed at and actually most people were really positive. I dont think my days of fighting for DD3 are over yet. She is such a lovely girl and has a huge amount of personality and sunny nature. (most of the time!!!!) She is great with people and I just hope we can help her feel good about herself for the future. Appointment on Monday with the Connexions guy, so another round of discussions, i just hope he maybe a bit more positive and productive.

Have a good weekend everyone. smile

Chocaholic73 Sat 20-Mar-10 11:21:55

Congrats Dwardle. Glad DS is managing school Nickschick and that DD has been enjoying the sunshine Katsh. Hello everyone else.
Positive - sorry things didn't go well for DD yesterday. It is heartbreaking when things like that don't work out. Hopefully Connexions will come up with something. They have all sorts of contacts and can probably also arrange more flexible arrangements with colleges than parents can. I think I gave you details of DDs online learning. Through a completely different set of complicated issues with my DD2, she has been using an online school for the past few months (she will be going back into "proper" school soon). If you're interested, I can give you details. Hope everything works out.
I was thinking it'd be nice to do a "roll call" of who and where we are (not exactly) and I'm hopeless at remembering this sort of thing - what do you reckon?

optimisticmumma Sat 20-Mar-10 11:56:09

Good idea, Choc...

Positive - so sorry you had such an awful time! Your DD sounds wonderful and things will work out. You have faith and I believe that things work out for thebest in the end - just difficult when you don't know where the end is. Now a question. Is it time to bring up LP with your DDagain and try to get her to be openminded and have a chat with a practitioner? As her dreams are being systematically crushed is now the time to say 'sod it what have I got to lose?'. She can still be cynical about it and disbelieving but....??

Nickschick - so glad your DS has had a good 3 weeks - hope it continues.

Hi to everyone else...

dwardle Sun 21-Mar-10 15:33:29

Hi All,
First of all, Positive what an awful experience for you and dd. Are you feeling any less stressed? Choc's suggestions seem very helpful. Was part of the childcare prob gcses in eng & maths? Rules are SO inflexible - yes of course we want our children to be cared for by the right people, but it is about so much more than qualifications. Glad you have had some positive feedback. Hang on in there - I agree with OM about both things turning out in the end AND rementioning LP. dd is using it to help her deal with things in a positive way. She is definitely better as a person for having done it, in my opinion.

Great idea about a roll call. Shall I start?

Here goes.

DD is 16 and a half and has had CFS since Oct 2008, with a dodgy period a year before that. We live in the West Midlands.
DD has a Paed who has advocated pacing herself in a very low key way, cutting back on school, some graded excercise and most importantly viewing her in a holistic way. She has had support from CAMHS, mainly CBT from a counsellor and also Melatonin to help her sleep.
DD is in her gcse year (Y11) and has dropped from 10 gcses & an AS to 6. She was forecast As and A*s and I think she will come out with As and Bs in the 6 she is taking (inc art, drama, maths, eng x 2 and biology)
From Nov 2008 - Summer 2009, dd was hardly at school and just lay limply around the house.She was always much brighter in the school holidays but as soon as school started again, plummeted rapidly.
DD did LP in July 2009 and had a brilliant summer. When she went back to school in the autumn, she started to show a range of different symptoms - headaches, stomach pain - much of which caused her to continue missing school.The fatigue was not there any more, though. However, she has slowly made progress and now gets into school most days - but rarely for a full day as she has a short timetable. She does now have a social life!
At her worst, she could not read, concentrate and lay on the sofa all day with a white face.

Have I missed anything? Is that the sort of thing you had in mind, Choc?

optimisticmumma Mon 22-Mar-10 19:39:03

Choc : This is us:
My DD is in Year 10 and is 14. She was diagnosed with CFS/ME in the summer of Y7 following a virus.
She saw Dr Crawley and we tried pacing. She hated it. At her worst she was doing 2 lessons every other day. A year ago she did Lightning process because she was faced with being home tutored and has been back at school (around 90%) ever since. She is still prone to illness and less resilient than her peers but she manages it and significantly does not have the fatigue which is the overriding sympton of LP. She saw a specialist at GOSH last summer who pronounced her well and was positive regarding LP.

optimisticmumma Mon 22-Mar-10 19:40:46

sorry should have said: 'fatigue which is the overriding symptom of ME' doh!

katsh Mon 22-Mar-10 20:36:53

ok - dd2 is just 8 and yr 3. She became ill last Easter following a virus, and was diagnosed with CFS last July. She hasn't been to school since November and has had a learning mentor at home x3 1 hour sessions for the last 4 weeks. We have the support of a nurse specialist, paed, dietitian and CAMHS through which she has weekly play therapy. We've been pacing ( rigorously at first and then more loosely) . We think ( hope) that she has been at her worst ( lying in bed looking grey, crying and saying that she'd got no muscles to lift her head and she wanted to die sad ). She is now starting to put on weight, has regained her appetite, and can handle interactions with other people again. I have a 10 yr old dd and a 2 yr old ds - 10 yr old has a nasty nerve disease which has attacked her leg and she cannot walk unaided and is getting worse, so I'm pretty much house bound apart from the kindness of friends and homestart smile And very importantly - this forum has made the difference between sinking and swimming in the past year. Thank you all.

katsh Mon 22-Mar-10 20:37:59

Should have included - we're Surrey/ Berkshire/ Hampshire border

This is us:

DD3 is now 15, 16 in June and should be year 11. Before her illness she was incredibly active. She represented her county (Isle of Wight) in their swim team and would train up to 10 - 15 hours a week. She loved cycling and just being active outdoors. She is very dyslexic and so she was proud of her sporting acheivemnets to compensate for feeling "thick" at school. (her words, not mine!!) She became unwell in June 2008 with a virus, later discovered to be Glandular Fever. Returned to school after a week, although not fully recovered. Sluggish through summer holidays and noticed a dramatic downturn in her health when she started back in September. Diagnosed with CFS/ME on first visit to GP. shock Rapidly went downhill and referred to paediatrician in November 2008, when she also went to school for the last time. (School were horrendous and did not believe she was ill at all!) Home tutored from December, but could only cope with 10 - 30 mins twice a week. Had a visit from Dr Crawley in April 2009. By this time DD was sleeping 20+ hours a day. Started a sleep deprivation programme and strict pacing. Worked to a point, but physically DD still in decline. Had 4 months of her being unable to walk/stand at all, we were feeding her and she was needing 24 hour nursing care. Complications such as her being unable to swallow due to muscles in her throat giving up and terrible circulation due to inactivity leading to black feet/legs.
After 4 - 5 months of her worst DD suddenly was able to stand again and has progressed well (ish) since then. Now attending an education unit which is fantastic, twice a week for one and a half hours a time. Able to walk around the house well most of the time and sometimes goes out with friends for a short time!
Trying to sort out plans for next year as regards education, but very difficult to plan how well she may be.

Right, now back to now....
Had another meeting with the connexions guy yesterday, without DD. He has said that basically they can only offer the course that DD is refusing! Reasons being that she could be ill again and really might not be able to keep up if she takes time off. At one point I didnt know whether I was going to lose my temper with him, or burst into tears. I managed to do neither, but am finding this really difficult because she seems to have absolutely no options. All her school life she has struggled and looked forward to getting to 16, when she would be able to do a course more "hands-on" and less academic, which is just what she needs. Now due to CFS/ME she is being told she has to do the academic stuff before she can do the next step. She is a lovely girl and I think life sucks for her at the moment. Although, I cant let her know that I feel so down about it all. I am trying to be up-beat and positive to encourage her that it will all work out fine, although I really cant see how.

Dwardle - Spill the beans about your new job.... please!!! <<<nosey emoticon>>>>

LP question. Is a lot of the LP training about not thinking that you are ill and not accepting that your body will not cope? Is it about changing your mind patterns to think positively and therefore be able to act positively? - If you understand the question. confused

dinamum Tue 23-Mar-10 14:02:34

I think LP is more than that Positive. It really is hard to understand but so simple to apply!

What it is saying is that certain patterns of behaviour are remembered by the brain and the "ill" person gets stuck in this loop. All of it is pretty much self conscious. If we all thought ok I am well I will be better now - that will not make us better. (Believe me I bet most people with ME has tried that!)

What it does it change the physical reactions to a situation that used to happen.

ME/CFS is my mind and my mind only(!) the body overreacting to a situation. So if I walked up stairs my body thought it had climbed Everest and reacted as such.

So LP trains the brain to tell the body that it does not need to react in such an extreme manner. Then symptons go.

Can I add that this is my simple watered down interpretation to help me and may not be how others have interpreted it.

I am a little reluctant to say too much as each persons interpretation may set other peoples brains reaction working in another way hence the so called secrecy regarding LP. It is so that other peoples ideas and believes do not get in the way of understanding it fully. I am not a practioner (as you can tell by my woely description) but they will help to explain it better!

It is such a shame that as your daughter gets better things seem to get harder for her. I do hope it can all get sorted out wish I had a magic wand

twentyoneagain Tue 23-Mar-10 14:55:03

Now for us - DD is now age 14 and in year 10.

She became ill at Christmas 2007 with a flu-like virus, and just didn't seem to get over it. Many blood tests later DD was diagnosed by Paed as having CFS at Easter 2008.

She missed most of the rest of year 8 and although she seemed to get better during the Summer, she crashed again badly when she went back to school in year 9.

Following a strict pacing and management regime we got DD back into school in Feb 2009,just doing a small amount each day, and built her up gradually until she was almost full time in the Summer.

DD changed schools in September 2009 (year 10) to a less pressurised environment and basically I think it is safe to say DD is better.

I think we have been lucky in that DD was not as bad as some of the other DCs here, although at her worst she could not see or lift her head from the pillow.

We did use CBT for several months in 2009 and DD has been seeing a homeopath since January 2009 and still seems to value chatting to her homeopath even now.

optimisticmumma Tue 23-Mar-10 17:04:25

Positive = in answer to your LP question. I think of it as this: My DD had broadband neuron connections to illness/ME and dial -up to health. It was a question of reversing that. Positive outcomes from the challenges set meant that she was building up success. It is too difficult to explain LP in a nutshell. All I can say is you are assessed as to your willingness to look at your beliefs surrounding illness etc and that the practitioners will not take money off people who they don't think are ready/able to give LP a good go. There is quite a lot of groundwork to do before you do the 3 day course...\hth

dwardle Tue 23-Mar-10 18:01:04

Great explanations about LP!
The other thing about LP is that it is NOT saying your illness is made up - it is teaching you how to use your mind to help you get better - dd says it is about finding ways of dealing and coping. DD would talk to your dd if she wanted!
Job
Is in big primary school in another town! V exciting and challenging!shock

Positive - am so shocked and disappointed about your news about dd's course Want to ask more qs - is your connexions bloke good?

Thanks to you all for the LP input. Lots to think about and look into. Not saying more than that at the moment. wink

Here DD has had a better week. She has come around a little more to the idea of college and I think we have both had a bit of a reality check as to how far she needs to go yet to be well. sad

A good meeting yesterday with social services - yes, I did say good and social serices in the same sentence, probably for the first time EVER!!! Makes a change after all the bad education meetings recently!

Only one more week then the hols grin

Hope you are all doing ok. Have a good weekend. smile

katsh Fri 26-Mar-10 23:07:29

Hi all - Positive glad that dd has had a better week and that you had a good meeting.
I just wanted to let you know that we got our DLA grin grin grin. They read my appeal document and awarded it without us having to go to tribunal. Thank you all for your encouragement to appeal it. I felt quite emotional when it came through - I suppose it had felt like a big battle to be believed about the impact of dd2's illness. So now I can get a blue badge automatically and that will also make life easier. It came on a good day ( in a funny way) as dd2 had a very bad day today.
Anyway - hope you all have a great weekend.

dwardle Sat 27-Mar-10 18:25:13

Hurray - am SO pleased for you about the DLAgringrin
Your comment about this thread was also appreciated - and reciprocated. I think this thread has made the most enormous difference to me too. Sorry you had a bad day with dd - you will but in time they will get fewer and (v bad englishconfused)less bad. Keep smiling. Think it is nearly glass of wine timesmile

Are you sure you haven't had a glass too many already, dwardle? Loads of grin's!!!

Katsh - Brilliant news about DLA. The blue badge has made such a difference to us too. It makes it so much easier to go out and know that you can park close to the shop, or whatever. No money will make up for what is happening, but it is good to make things a little bit easier. We are very strict about what ours is spent on. Things that make life better and easier for DD3. Well done!!

Hope you are all well and having a good weekend. grin

dwardle Sun 28-Mar-10 09:26:02

Ha Ha!
Positive - Do let us know about social services - am intrigued!

twentyoneagain Sun 28-Mar-10 18:07:01

Katsh that is such good news, and it will make such a difference to you and to DD. I am sorry that she was having a bad day and I do hope she is feeling better today.

Dwardle, it was only a more positive meeting than last time when the idiot gentleman asked if the reason that DD was only doing 2 days at the tuition centre was because she couldn't be bothered angry shock [and thump]!!!!!!!

This time had a very nice man who really seemed to be the first social worker we have seen with a few marbles in place! It was only a review meeting for the care that DD has. We have reduced the number of hours and were considering reducing more, but he suggesed we keep the number where it is, but just use what we want, in case we need to increase at a later date. He also was saying about her care when she is 18!!!! She is still not yet 16, so I was a bit shock, bu he explained that it would be beneficial to keep anything going if we need it, as when she is 18 they can tap into lots of different funds for her training and education wise. I think 2 years is a bit long myself, but then we are nearly 2 years into this now, so we will wait and see.

DD had a more positive talk with me today about the college course. Fingers crossed for Wednesday. If that goes pear shaped I will NEVER convince her again!!!!! (she's as stubborn as her mum, her dad--, a mule!)

Hope you are all good, and not too much red wine celebrating that new job now Dwardle. - not your own anyway, can I share?

Shout out to OM - where have you gone? You've disappeared from the other thread, too. Come back!!! grin

optimisticmumma Wed 31-Mar-10 19:37:13

I'm here, I'm here!!
RL getting in the way!

Just a quickie.

HiOM - Hope RL calms down soon.

DD3 went to the college today and came home really positive about it all and very much for doing that course!! grin grin grin
Thats one less worry for a while.

dwardle Thu 01-Apr-10 16:42:58

Oh Positive - am SO pleased for you.grin
Why does Mumsnet not have a smiley for a hug?
Huge well done to dd.
Hi everyone - hope you are looking forward to Easter - have a good week! Am off to frozen north and out of internet range I think so may not be in touch for a bit.
OM - know what you mean about RL! Hope yours calms down a bit.

HAPPY EASTER to all you special people on here!

Have a good, relaxed few weeks without any school stresses.

Chocaholic73 Thu 08-Apr-10 09:59:16

Hello All. Glad everything seems to be going well for everyone and hopefully you're all enjoying the Easter break. Realise I suggested "introducing ourselves" and then scarpered without doing so!

So ....I live in Hertfordshire. DD1 (now 18) has had severe CFS/ME for 3 years. At worst she was virtually bedbound and needed help to get to the loo which was the worst point. At this stage we had a home assessment from Dr Crawley who put her on a very strict pacing regime, with a total of 4 hours "red" activity including watching TV and computer which was very tough when all she could do was lie there. Anyway, slowly things improved so she was able to move round the house fairly normally again but we were totally stuck on getting her out as that led to lots of peaks and troughs. Through the recommendation of a friend, we found the Perrin Technique which is basically a system of lymphatic drainage and, although it has cost a bomb, there is absolutely no doubt that it has made a vast difference. She is now able to go out for meals or short trips to the shops for example. In addition, to DD1, DD2 who is 13 keeps life interesting being a complex mix of ASD, Dyspraxia and a few other bits and pieces. She has been out of mainstream school since November and using an online school but it has increased the pressure on me no end and limited the opportunities I have to take DD1 out. Fortunately, she is starting a new mainstream school (with lots of support) after Easter. That's us I think!

Hope all the quietness on here is due to everyone enjoying the holidays without hiccup!!

We certainly are. DD3 has been really good and has been dressed in clothes every day for 2 weeks, which is a first in 20 months! grin She is actually shopping with a friend today. shock grin I really didn't mind handing over a fair amount of money for her to have a good time! I think her plan is to make up for nearly 2 years of no shopping. hmm

katsh Wed 14-Apr-10 22:31:49

Positive - that's such good news. Must have made for a happy Easter. I hope that today was good following yesterdays shopping.
We are having a mixed time here. We went away to a christian event over Easter and dd2 took a big dip which was probably inevitable. 3 hrs in the car and away from her quiet places was too much for her. She's picked up since we've come home, but still not great. My dd1 with the nerve problem has been deteriorating but finally funding has been approved for her to be seen at a specialist clinic next week, so I'm hoping they may be able to halt her slide downwards. Ds has had a high fever this week, but it just makes him quiet and stationary , which is quite a change from his high energy loudness grin He is getting better today so the volume is returning ! Hope the rest of the holidays go well for you all.

Hi Katsh - was it Spring Harvest you went to, Which one, which week? This year was he first time I have not organised a trip for the past 12 years. Hope you got a lot from it. I hope DD has recoverd now. Have you got the education sorted out now? I cant remember whether you were hving home tuition?

DDs paediatrician is stuck somewhere abroad. Really frustrating as I had been trying to contact her before she went away and now goodness only knows when she will be back to work.

DD doing fairly well, but still a very flimsy wellness. On the plus side she recovers quickly now.

Hope everyone is not stranded and not having to work double to cover colleagues that are! hmm

katsh Tue 20-Apr-10 22:29:08

hi positive - minehead week 1. It was a good time - thank goodness they televise the big top - I watched most from there while dd lay on the sofa or her bed. She's better than she was, but still a way off where she was pre-Easter. She's having home tutoring x 3 per week. Yesterday was the first after the holidays and it exhausted her, but today wasn't so bad. I'm sorry you can't catch your dr. How has your dd been in the past week?
Hope everyone else is ok.

Katsh hey, my DD2 was Minehead week 1. She went with friends. My best friend went too, that week.

Sorry your DD is still down. Hold on in there. It does not last forever. Last year our DD had a huge jump upwards in a very short space of time and even though we still have a way to go, we are on the way up.smile

Breakfast calling.

katsh Thu 22-Apr-10 08:37:49

Positive - if your dd still has programme planner from week 1 ( unlikely I'm sure) there's a photo of my family on contents page! Taken last year just before dd2 became ill, so a bit of a choked up moment when we saw it. Hope this week going ok for all.
I've decided to go back to much stricter pacing to see if that helps move things upwards for dd2. First I need a strong cup of tea and a shower and then I'll be able to face it grin.

KAtsh I have just seen my friend who was there week 1, too and she is going to see if she has the planner for me to be nosey see! wink My friend was a little disappointed with SH this year. It was her first year without me, which she says made a difference hmm and she felt it was just going over old ground. DId you get a lot out of it? My DD2 certainly had a great time, as always. I am slightly envious now that I ahve to wait another year. With one of my jobs I do organise a trip for 150 youth from here to go to Soul Survivor, but am now way too old to do the camping and I like my necessities luxuries, like bed, shower, cold water to drink, hot water to wash, proper food etc. The idea of joining them on that sends shivers up my spine, and certainly not the sort of shivers I should be getting!! grin

I know it is a total pain going back to the pacing, but it really does seem to work. It is frustratingly slow and troublesome, but keep your eyes on one step at a time and give it a good go. Is DD willing to get on board and do this, even if she doesn't really like the short-term plans? I think it must be very difficult if the sufferer is not positive and determined that she/he will put the effort into getting progress. I hope you have progress with it. The summer sun seems to really give my DD a boost last year. I am really hoping for the same this year. Hopefully it will do the same for your DD too.

Hows everyone else doing? <<waves>> to you all grin.

katsh Thu 22-Apr-10 14:56:20

Positive - I did find it good. I suppose you listen to stuff from your particular circumstance and therefore as our current situation ( 2 kids with chronic illness) is new, things spoke to that in a new way. We found it logistically difficult with the dd's and ds, but plenty of food for thought.

DD2 is up for pacing, but in fact has spent all morning in bed - she said she just needed to be snuggly. So no real need to pace! just about to get her up to go collect dd1 from school.

Loving the sunshine smile

dwardle Thu 22-Apr-10 22:37:36

Hi All
After a load of great weeks, dd has crashed - white face, sore throat etc! She has gone to bed about 3 hrs earlier than usualhmm
She has been SOOO good recently.Has 3 exams between may & June. Must stay calm. She will recover. Think she may have overdone things recently.
Glad things are improving for you, Positive and hang on in there Katsh. How is the new school Choc?
OM & 21again - are you still there?

optimisticmumma Thu 22-Apr-10 23:08:34

Still here Dwardle. Don't talk of crashing - remember your DD is just 'doing ill' today! So is mine for that matter - the start of the hayfever season in our case...If I say do you think you are 'doing ME' she says 'No just a day off like everyone else!'
Your DD will be fine for her exams and has probably been having a great time - school is tiring for everyone including healthy kids! It's the first week back remember.She will recover if not tomorrow then Monday...
My DD has 2 GCSEs this year too!

Katsch - you sound very positive so keep going!
Positive - so glad things are on the up!

Hi to 21again and Choc and others on the thread...

dwardle Fri 23-Apr-10 18:15:32

Thank you OM - just what I needed to hear -She was doing ill but is now doing smiles and seems much perkier. Will remember this. Will also talk to dd about doing vs being.
Have you ever thought of being an LP trainer? You would be acegrin

optimisticmumma Fri 23-Apr-10 18:32:19

Thanks Dwardle - I have but don't really think I would be good enough as I haven't experienced ME personally which I think you need to...however I am looking into doing some other sort of NLP training etc as I love all this stuff! grin
A useful rule of thumb for me is; Can my DD get up without having that fatigue? and the answer is always 'yes' so then I take no notice of the pale face, headache etc as she is allowed to be ill sometimes! FWIW I do think you are left which the residue of the illness for a good while - but that's only me talking. DD is preparing for her D of E practice expedition this weekend - I am so proud of her!!

Sorry to hear that DD has had a dip, Dwardle. I blame it on the volcano ash, or something. Drastic dip here too. Dont really understand it, we normally dip at the end of term, pick up over the hols, then start again, but this time all the wrong way round. Oh well, hopefully a good weekend and start again next week. Glad your DD is smiling this evening though. smile

OM - Your comment about "Can my DD get up without having that fatigue? and the answer is always 'yes' ...." What if the answer is NO? DD is still fatigued on waking? What does that mean? <<oh wise one!!>>

Hope everyone has a lovely weekend in the sunshine.

optimisticmumma Fri 23-Apr-10 20:28:00

PA - it means she still has ME imo. As Dwardle's DD has done LP she is free of ME therefore if she is ill she is ill it doesn't mean ME. If she was ill for say a few days and was always waking fatigued and this didn't improve then she would still be 'doing ME'. I was trying to say to Dwardle not to panic and that talk of 'crashing' is back to ME speak!! I don't think I'm explaining this very well - had a glass of the old vino already!!

katsh Fri 23-Apr-10 20:38:59

You guys have really got me wondering about LP for my dd but I do struggle to understand how it differs from "positive thinking". I so wish I could sit down in a room with all of you and have a massive CFS Q & A session grin.
DD had bad night - vomiting and distressed. Seems to be that when she has a very bad few days her ability to tolerate food decreases and she has a vomiting episode. She is so tiny that she can't really do with missing a few days food. When I read your LP stuff I wonder if that would help her, but I can't really see how.

It's my wonderful DH's birthday today, so as we have 2 out of 3 sick tonight we are in watching DVD's of classic 70's series from his childhood!

Have a good weekend all.

optimisticmumma Fri 23-Apr-10 21:33:09

Katsh - It is different to positive thinking as it is all about accessing different neural pathways. Why don't you ring your local practitioner and talk to them about it? A chat over the phone won't hurt. Your DD may be too young although I know ours uses puppets etc with the young ones.
It's a bit like explaining your Christian beliefs to someone else who can't see how it can be true!!?! May be it's worth suspending disbelief and giving it a try if you can....

Have a lovely weekend and I hope that your DC improve soon. You really have had it hard but your DH sounds lovely so stay strong won't you?

optimisticmumma Fri 23-Apr-10 21:38:23

BTW Katsh we could sit down in a room and talk it's been done before!grin Remember our meet-up PA and Dwardle? grin. I would be happy to chat to you in RL...

dwardle Sat 24-Apr-10 10:19:06

And me! I can get to London very easilygrinOur meetup was wonderful. I could even bring dd - who oddly never seems to turn down a day in London!shock

Yes - totally agree with OM as usual. ME does leave a residue.dd and I have been wondering whether to ask her practitioner for a meet-up to reinforce her skills. I think what took me to LP was a feeling of what have we got to lose (apart from the money of course), given that it works for others and has medical recognition (GOSH, Dr Crawley, that conference last summer mentioned it) and that CBT is an acknowledged way of treating ME and this is not unrelated, and that Neuro-ling programming is also effective. So - we tried it and I am SO glad we did. You could certainly have a conversation with someone to see if your dd is old enough, Katsh.

dinamum Sat 24-Apr-10 19:02:54

Katsch LP is nothing to do with positive thinking at all.

Ok bear with me dodgy description of LP coming up here!

If you see something that you are frightened off - you react in a certain way eg if I see a snake my stomach churns, I take short breaths and feel like running away. I know that it is often a foolish and unnecessaryly response but my body physical behaves like that. If I think positively ie that the snake will not hurt me, the snake is nice etc I will still react physically in the same way.

So in ME your body reacts in a certain way and you have to retrain your brain to make your body physically react in a different way. (Still with me!)

So by using the LP technique it changes the brains response to a given situation and hence stops the symptons.

The more you do the LP the more your brains reaction becomes automatic to the new behaviour.

This is why if you think it will not work it won't because you are only allowing part of your brain to do the LP and that will not be sufficient to change the brains reaction.

Personally I think kids will be great at LP, they will not need to understand the theory (it is only us questionning adults who want to know how it works)but to just do the LP I bet kids are better than adults.

If this is a bit waffly it may help if you get insomnia later grin

optimisticmumma Sat 24-Apr-10 19:35:02

Hear, hear , Dinamum - thanks for putting into words what I was trying to say....I agree that kids are so much more open and able to access LP...

dwardle Sun 25-Apr-10 08:28:10

Brilliant explanation, Dinamumgrin

Thank you Dinamum. I will try and get DH and DD3 to read that......

katsh Sun 25-Apr-10 21:24:09

Thank you all - I've been doing masses of thinking about it all over the weekend. I've contacted 2 practitioners in my area and will talk to them - although neither have ever worked with someone as young as dd. It has made me look at her "symptoms" and OM's comment " Can she get up without fatigue" - at the moment for dd the answer is yes. So i'm looking closely at what it is during her day that brings her down. I realise that it is often her looking unwell that causes me to curtail activity etc ( as at her age I am, and have to be in total control of the pacing for her). Today we had a conversation where she told me that often experiencing a low level of symptoms causes her to worry about having more and then she feels very tired and then the symptoms progress. I can see from what I've read that LP could help that. I am going to talk to her play therapist and see if the CAMHS team might be able to help her a bit with that.
Anyway - thanks for all your input as ever.
Have a good week everyone.

dwardle Sun 25-Apr-10 21:54:03

Am thrilled - dd's LP practitioner has agreed to a follow up visit and dd has agreed to go!
What a brilliant series of posts for provoking thought and reflection. Thank you everyone - hope it has helped you as much as it has helped me.smile

Dwardle Thats good news. I hope things get another kick in the right direction for DD.

I spoke to paed here yesterday after 6 weeks of trying to contact her and her being stuck on holiday. (Very apologetic for not getting back to me for so long and she has now given me her direct contact, which I shouldn't have really!)Anyway, she has suggested applying to our NHS trust to see if they will pay for Dr Crawley to come back again to see DD and give a revised plan.

Bad week again here. Fed up. sad

dinamum Tue 27-Apr-10 07:57:43

Katsch I would contact Phil Parker direct as your DD may be a "special" case as she is young. Go to the top and see if he can comeup with an help or advice.

PA sorry things are bad - lets hope this is a positive step to get the professionals on board and listening to get things sorted!

dwardle Tue 27-Apr-10 19:36:40

V good suggestion Dinamum
Positive - you do sound fed up. Good idea from your paed though.

katsh Tue 27-Apr-10 22:06:16

Evening. Positive - so sorry you are having a bad week. I hope your PCT can move quickly on funding for the appointment. Sounds like a good plan. *Dwardle" - hope the LP person can help your dd keep moving forward.
We have decided not to go with LP for dd at this stage. I've done a lot of reading and thinking in the past few days, and mostly, in view of her age it doesn't seem like the right thing for her.
I had a good chat with her play therapist today who is going to talk with her about some of the things going on for her. I'm also trying to look more carefully at her activity levels and see if we can adjust things to make it work better for her.
I do find it hard - as I've got 2 children now with different, chronic, nobody knows a great deal about them, who knows when they might end - conditions, which both need different management. Some days like today i just feel a bit confused . Off to sleep now - tomorrow is another day.

katsh Tue 27-Apr-10 22:07:19

thought I'd finally figured out how to write a name in bold, but see with Dwardle I stuffed up grin sorry Dwardle

katsh Tue 04-May-10 13:38:01

sorry for killing the thread grin or have you all gone and started a new one somewhere else? Hope all ok.

dwardle Tue 04-May-10 20:20:39

You haven't! Have just been on another planet - sorry! Did you have a good weekend? Ours was okay but last week was challenging to say the least. DD was doing ill after her drama gcse. However, she is now doing teenage and is in her room with the laptophmm
Katsh - I have never managed thebold so now I am jealousenvy
Is everyone else okay?
And now it worked!

I'm not hiding from you Katsh, honest! grin

Same old, same old, here. Just as I think things are going up, a bad days comes along to remind me how far we still need to go.

For those following the school saga, I have received all the notes from DDs school. I wanted to check things before she moves on to college and make sure that no "baggage" (lies) is there. Very interesting reading. In black and white that we were not believed about her illness. The one person we had 90% of our problems with, unfortunately, was the one who collated all the notes for copying. There is NOTHING throughout 100s of pages to suggest that he even knew who DD was! His name has been erradicated from everything. None of his communications are there! hmm

Hope everyone else is doing ok.

Just received an email from the local Paed. Dr Crawley has agreed to come and see DD again to re-assess her and this should be soon. smile

Also told to go back to the pacing and be strict about it, which has gone down like a lead balloon!! hmm (if the lead balloon goes down, DD has hit orbit and is flying through outer space about this suggestion!!)

But hopefully we will speak about LP, too.

katsh Thu 06-May-10 20:59:09

That's great news positive - at least the bit about Dr Crawley coming - sorry the pacing suggestion isn't welcomed by your dd. Can I ask what your strict pacing looks like? I have gone back to moderate pacing - partly because I can't quite face the full on version myself. I have been wondering whether I should get dd seen by dr Crawley - just to have a different viewpoint from the local one.
dd a bit better today. My parents are staying and I took my Mum out to beautiful RHS gardens today whilst my Dad looked after dd. Lovely to get out for a while ( even though I was still pushing a wheelchair grin )

Hi Katsh, glad you had a good day yesterday. I am probably not very good at describing the pacing, but I will give it a go: "energy" use is put into 3 categories, red, orange & green. Green is when you are as relaxed as you can be without actually being asleep. ie: lying down listening to calm music. Orange is "mild" activity such as watching a favourite film that you dont have to think about because you have watched it a million times before. Red activity is any movement around the home, reading, computer use, watching something that you are interested in on TV, personal care such as a shower. You then find your "baseline", which is the state where DD can do the same amount on a good day as well as a bad day with no crash afterwards. Then you increase that level by 10% a week.

Here, when we saw Dr Crawley just over a year ago, we started on 3 hours of red activity a day, but this had to be reduced to 2.5 hours before we found her baseline properly. - when it took 20 minutes to get her downstairs in the morning and 20 minutes to bed at night, 20 minutes to have a wash and each time she went to the toilet would be 5 minutes, eating was about 15 minutes a time, it very quickly adds up and she ended up with less than 1/2 hour a day of an sort of "activity" that she could chose what to do. We split this into 3 x 10 mins, one for morning, one afternoon and one evening. Then gradually increased.

This was done alongside a sleep reduction programme. DD had been sleeping up to 21 hours a day. Apparently this was really poor quality sleep, so the more she had, the more she felt she needed. Over a 2 week period we had to reduce this drastically to 9 hours a night. This was so hard as she wasn't allowed to actually do anything that was likely to keep her awake, because it was all red energy!!!

BUT it worked really well for us. We literally counted minutes! - she would try to be as quick as possible on the toilet, just so that she was not using up her time. hmm At this time she wasn't able to walk at all, so being lifted or crawling took a lot more time (and energy).

I hope that explains it alright for you, if not I am sure someone else will do a better job.

AYME were very good at helping us out with this, so they may be worth a call.
Dr Crawley is doing a trial programme starting in September, into the Lightning Process, so if you are seen by her afer September DD may be invited onto that trial.

Chocaholic73 Fri 07-May-10 10:06:16

brilliant description of pacing Positive ..that is it in a nutshell. My DD started off on 4 hours red at a time she could just get herself from bed to wheelchair to be pushed to the loo and then reverse to go back. She couldnt stand or walk at all...it is very, very hard but it does work. Dr Crawley would explain things to your DD in a way that she can understand and I think that is so important. Our GPs didnt do choose and book at the time but signed up specially, when we hadnt heard from the PCT after a long time. Re the Lightening Process, this thread is very "pro" and I know a lot of you have had a fantastic amount of success with it, but it is not for everyone and that everyone includes my DD. Like everything else, it works for some people and not others. CFS/ME is really an umbrella term which probably explains why, plus also the fact that some people are not in the right mindset at the time. Hope I'm not offending anyone here but I just wanted to point out that Lightening Process is not the way forward for everyone.

Thanks for that Choc.
Can I ask you something? Tell me to mind my own business, by all means!! How did you come to the decision that LP was not for your daughter?

I started off very sceptical, but have come round far more over the past year, but I am really unsure as to whether it is right to go down that route with DD. I am not against LP, I am not Pro LP, just want to do what is right for DD.

As I see it I do not think DD is a "typical" CFS/ME sufferer, and I think that is what is muddying the waters a bit for me.

Also, DH could well be without a job at the end of July so the financial implications have to be considered, especially as where we live, there is no practitioner and we would have to add on the travelling/accomodation costs, which from here, are not cheap!
I think I am a little scared it wont work and then I would have wasted all that money and effort and I know that if it didn't work DD would take it as a failure and she would probably have a set back.

Not easy to put into words how I feel about it, so sorry about rambles.

katsh Fri 07-May-10 11:20:27

Thanks for responses. I guess the thing that is difficult to get your head around when starting proper pacing is that it is so hard to impose these limits of choice on our children - positive for your dd to get 30 mins choice a day must have been so hard for her and you. I have started today with a new resolve ( again grin). When we paced properly last autumn dd did nothing for longer than 20 mins as that seemed to be her tipping point, and had a day interspersed with lots of rest. She has only being having a lunchtime rest but that is obviously not enough for her. So today it's been back to the old regime. I guess I have to really give this a good go, before trying Dr Crawley as she will tell me the same thing. I just wish I could have someone figure out her baseline for me, as I find it really hard to get there and I know it will take a few weeks. Oh for a magic wand smile Choc how is your dd at the moment? How is Perrins going? You may have seen from my posts that although we've looked into L.P we don't think it would be right for DD at the moment either - but I don't think anyone on this thread is offended by anyone - it's great that everyone shares their trials and errors and thoughts. I hope that things are ok with you.

x-posted with you Katsh and I meant to ask how Choc's DD was going now too.

Been a very loooooooong night! I am nearly asleep at my keyboard. Home for a "nap" this afternoon to refresh the brain!! smile

Chocaholic73 Fri 07-May-10 12:31:28

have you been involved in the counting Positive or just watching? I gave up, couldnt cope with sitting up all night ..at my age I need my beauty sleep!!
In answer to your question Katsh, like everyone else, I have spent a lot of time researching all the various things around and for a long time was bogged down with it - you can always find someone who a treatment has worked for and then another who it hasnt. DD was 15.5 when she was first ill and has always been very anti LP ..she is very logical and "scientificy" and not particularly convinced by LP which she has also researched. To my mind, it goes totally against all the conventional advice (although I am the first to admit that conventional does not have all the answers for CFS/ME). I cannot (and neither can DD) get my head round the fact that (if my understanding is correct) her brain has "taught" her body to overreact in this way. We went for Perrins because it has a scientific/medical background and is administered by osteopaths. However, even here I had read the book twice and wavered over the "what if it doesnt work, what about the side effects, cost etc" things, when I met someone who's daughter had improved dramatically on it and the rest is history. DD is still doing well on it .. can now manage short outings to shops, meals, had a manicure recently. Unfortunately, she has lost her group of friends and has a lot of downs because she wants to go places but doesnt have anywhere to go (iyswim). She is not yet up to going to college which would solve that one. She is doing 2 AS Maths modules in a couple of weeks and stressing herself over that too!
Sorry for going on - bet your'e sorry you asked now!! Have a good weekend everyone

Oh I wish I had been counting, but sadly just watching obsessively! Might look into how you sign up for counting for next time.

Dont be sorry about writing all that out. It is great to hear how others have worked through this. I find it really interesting and encouraging.

The friendship issue is a hard one, isnt it? DD has lost all her school friends. She has a lovely boyfriend now - met him when she was out of my sight for 15 mins shopping after Christmas!! But girls are a little on the short supply list. She can also manage short trips to shops now and the cinema and gets out of the house an average of once or twice a week. She has come a long way! smile She will be 16 in a few weeks time, but seems to have matured so much more because of having to deal with this. That is one positive to come out of it.

Now I am rambling,too.

Have a good weekend!! grin

Chocaholic73 Fri 07-May-10 18:58:02

Positive - wow so your DD just bumped into this boy and they "clicked"? That's great. It's interesting that she's lost her school friends too, I think kids that sort of age just don't "get" it, that someone their age can be so ill for so long. My DD sees a couple of girls from time to time she was at school with but neither are particularly local and one's now at uni up north. She just longs to be part of a group and I can remember how great that can be and she's missing all that. Well, better go and see how dinner's doing before it burns! smile

Yep, Choc, She had some money from Christmas that she desperately wanted to spend in the January sales. I drove her down to the shop and sat in the car while she went in with her friend to choose clothes. When she came out, 15 mins later, with bags she had a grin from one ear to the other and said that she had been served by a "lovely looking guy". Went from there. Just goes to show that no matter how close an eye you keep on them, sometimes it just happens! He is lovely and certainly makes her happy and has made her have somebody to be well for when she is having a bad time. Very understanding of CFS/ME aswell, as his auntie has suffered with it for years. They are very young, though so could be picking up the pieces of a broken heart at some time. hmm

twentyoneagain Sat 08-May-10 08:30:00

Hi to everyone - sorry I haven't been posting recently, I haven't completely gone away but other issues have taken over.

DD's chronic fatigue has not come back, she is ok on that front, but we are very concerned about her atm. Over a period of a few short weeks she has transformed from a happy normal girl into an anxious and very thin girl who doesn't want to eat, (she has never been overweight in her life and could not afford to lose weight). We are taking steps to deal with this and I am lucky to have a friend who has been down this route with her daughter and so have lots of good advice on this one. I don't want to turn this thread into one for eating disorders so I may well start a new one at some stage - I am sure there would be lots of help here on Mumsnet.

I shall keep checking in on you all and if I have any words of wisdom for you I will let you know.

I think I have aged ten years over the last two and could do with some stiff drinks and some plastic surgery!!! Still - deep breath and chin up as they say - we will all get there in the end smile.

21 - You poor thing and so sorry that DD is now having other problems.

Hope you get some good help for her and things become less stressful all round.

I dont mind you off loading on this thread one bit, but I am sure other mums out on the wider Mumsnet have experience and wonderful advise. I have found this thread to be a lifesaver, so I am sure others on specific problems will be the same. smile

Chocaholic73 Sat 08-May-10 11:34:00

sorry to hear this 21. This is a difficult sort of age for all kids, and perhaps this is a sort of reaction to the problems your DD has had with the CFS/ME ...I think I'm right in saying eating issues are often related to "control", and she didn't have that when she was ill. As Positive has said, I am sure there are other Mumsnetters who have children with this or have/had it themselves, so might be able to give you an insight. Don't be afraid to ask for help, and don't leave it if you are worried. The only good thing is I think the medical people know a bit more about eating issues than most do about CFS/ME! Don't forget to look after yourself too ...sometimes life seems to be one bad thing after another and you can't see the wood for the trees ...hopefully, you can sort this quickly, and things will improve again.

optimisticmumma Sat 08-May-10 19:16:01

Hi everyone and bigs hugs to you 21. I am so sorry that your DD is now having eating issues. Don't despair. She will come through and so will you. Please feel you can talk to us on this thread. We know you after all and can be supportive.smile
Choc - please don't think you have offended anyone on this thread. I am only 'pro' LP because having done it with my daughter I personally think the science stacks up and as it worked so well for DD I just wanted to share our success in the hope that other people who didn't know of it would maybe take the risk!
PA - we too went through the 'what if it doesn't work' scenario. In the end it was 'what if it does and we are preventing our DD from getting better'

BTW as a rider I do truly believe that only we know ourselves, our set-up and our children and we all have different ideas and beliefs over what is the best way forward for them...

Have a lovely weekend all!

twentyoneagain Mon 10-May-10 14:30:20

Thank you all for your kindness and support. Although this thread goes quiet from time to time, there is always someone around when needed and it has been a huge help to all of us.

I think the trigger here was the friendship issues that DD had earlier in the year. It made her terribly anxious and worried and although those problems have gone away now she has been left with no confidence whatsoever. Time will tell and we will have to be patient but firm with her.

Hope you all had a good weekend smile.

katsh Mon 10-May-10 14:42:29

21 so sorry to hear your DD is having such a rough time ( and you too). Thinking of you all.

dwardle Tue 11-May-10 18:31:43

Hi all
Typed a lovely long post and it got lost!
So - rapid response
21again - so sorry to hear about your problems. Send big hug and please don't stop talking we can listen!
Choc - you have not offended at all - I think we should all share what we have found helpful but we all make our own decisions about what is right for our dcs.
Positive - hope things are okay for you.
Katsh - hope things are okay for you too
Am SO stressed but fortunately only work so that's okay! Optimistic - how is your dd? Is she great?
Incidently, dd's CAMHS person spent ages explaining to her the physical responses the body can have to stress. Think she now believes me when I explain to her that the various ailments that pop up are linked to her trying to cope with exams that she wasn't in lessons for! Hopefully when that is over, she will be great!

Choc are you around? A quick question, as a fellow non-LP-ed DD! Did all your DDs symptons decline in a logical order, or did some of the more severe ones hang around longer than you expected?
I ask this because when DD was at her worst she had real trouble swallowing food and drink and was so nearly hospitalised on many occasions because of this. Anyway, nearly a year on, and she has improved a lot, but we still have to be careful when she is eating because her throat muscles just give up and she has trouble swallowing. Just stumped a bit as to why this is still lurking around and not disapearing as quickly as I expect it to.
any ideas?

Waves to everyone else around. grin

Chocaholic73 Wed 12-May-10 21:34:03

Hi Positive ...yes I'm here! DD never had the swallowing problem (thankfully). She does still occasionally get wobbly legs though which I find hugely scary because that's how she got before she stopped being able to walk. I do think these things can pop back but hopefully if they're in better shape, they don't stay. Sorry I can't be of more help!
Hello to everyone.

Thanks choc. Yep we have the wobbly legs too, which worry me and the leaning against anything and everything. I am beginning to think that maybe she is not as well as we had hoped and she is able to keep up an appearance of being better than she really is, if you get me.

katsh Thu 13-May-10 14:32:21

Sorry things not quite so good positive. We are going backwards at a remarkable speed here, despite the adoption of very strict pacing. DD is a weird grey colour, and complaining of lots of pains. I've left a message for her paediatrician as we're not due to see her until August, but I am feeling a little concerned and would like her checked out sooner. Even dd's play therapist phoned me this morning to say that when she saw her yesterday she was really alarmed shock. Play therapist sees her weekly so it's helpful to have her observations as sometimes I wonder if I'm seeing deterioration that no-one else sees.
Hope everyone else is ok.

dwardle Fri 14-May-10 19:49:51

Oh gosh Katsh - do keep us posted. Hope your paed gets in touch.

Also - even with LP, dd still has range of symptoms which reoccur. I do think, however, that what our new paed said was very helpful - which was that recovery from ME was a very up and down upward curve - like a jagged line which I can't reproduce here. It's just that over time, the low jags go less far down than they used to.And the up jags get gradually higher! Hope this makes sense after v hard day!

dwardle Wed 19-May-10 20:38:06

Have I thread - killed?

Obviously, Dwardle grin

Laptop problems here and frantic revision needing all the computer time {grrrr} sos not getting on a great deal.

Ticking along here. Hope you are all ok.

Chocaholic73 Mon 24-May-10 16:07:17

thought I'd just pop in and see how everyone is doing ...all out in the sun no doubt! Hope the good weather is helping DD, Katsh and she's improving. Any joy on getting the paed appointment brought forward? Hope everyone doing is exams/revision is doing OK. DD had her first Maths AS module this afternoon, she gets sooo stressed and jittery ....lots of red energy for nothing. Seemed to go OK in the end, last one on Thursday, then she's done for the moment thank goodness.

Hello everyone.

I hope this thread is quiet because everyone is doing ok at the moment! smile

Just wanted to come on and share some news from here.
DD3 took her maths and english tests this week. (not GCSE due to lack of schooling, but a smaller test.) She passed both. grin SHe had been more confident about the maths, but had a major confidence meltdown on the morning of the test and was in a terrible state. She passed, but perhaps not as well as she had hoped. English, she did not expect to do well in, but when in with the attitude that it really didnt matter, she had the maths one, so was not going to be a 16 year old with no qualifications at all, and she did really really well and has been advised to do the next level test.

My dyslexic girl who has had such little teaching over the past 2 years and was so far behind anyway actually got 100% in a reading test!! I cant believe it, neither could she!!

We are going shopping today on the mainland. Probably taking on too much, but hey, DD wants to give it a go, so plenty of coffee stops planned and we have sat down and planned which shops we are going to go into and in which order so that we can maximise the day with minimal energy. I know she will come back exhausted, but hopefully happy. grin We need to buy some clothes for a wedding and holiday in Greece in June.

Have a good weekend everyone and I hope you and DDs are all doing well. grin

dwardle Sun 30-May-10 12:24:53

Hi Everyone
Great to hear such positive news, Positivegrin
Things are pretty good here too. dd has 2 gcses exams left to do and has been having a fun time with her friends. We have 'review' appts with Paed and CAMHS in Oct just in case but she is now to all intents and purposes out of the support system and is behaving like a teenager in every wayhmm

Those of you who have dcs not as far on please see this as proof that they will get though this and things will get better - cos they do!

Hi, How are you all doing?

Katsch how is your DD? Has the warmer, sunnier weather helped her?

How about all the revising and exams for everyone else? Only a couple of weeks and all the stresses will be over (until the waiting for the results hmm)

It was this week (9th June) last year that DD3 stood up for the first time in nearly 5 months. smile
It was also 2 years ago this week that she was ill with Glandular fever, which triggered it all off for her.

She has been doing really well recently. Yesterday she even played with her brother for a while and was the livliest we have seen her, probably for about 20 months!!! smile She then went and sunbathed ..... under a blanket because she felt so cold, but wanted to sunbathe to feel "normal". confused And was exhausted by the evening, but on the whole a good day and some small steps forward. smile

hope you are all doing well. Please keep posting, I find it really encouraging to hear how your girls are doing and how much they are improving. It boosts my positive attitude!! grin

katsh Fri 04-Jun-10 13:36:03

Hi, sorry for not posting for a while. Last week was spent away from home doing intensive rehab for my other dd and was fantastic and amazing. Big progress there - thank goodness.

Choc hope your dd has enjoyed her half term. How many more exams has she to do? I hope things continue well for her. Dwardle glad all is good - I hope you've been having a lovely time in the sun! positive - great to hear of your dd playing and sunbathing. I hope that today she's not too tired.

My little dd continues to be up and down. She is as I write playing in the garden - looks like a little ghost, but is very happy. a very tight pacing few weeks has definitely got her out of a bad spot - I always find it hard to know where to go to from this point though. Continuing strict pacing makes her ( and all of us) feel like life is very constrained and dull. This week she's had a good time with her siblings at home, and has had fun. Where we went for dd1 last week was actually the same floor of the hospital in Bath where the paed. CFS team work, so at the prompting of the team we were with I have asked GP to refer her to Dr Crawley for assessment. I feel that 13 mths in we could do with having a fresh look at everything.

Chocaholic73 Sat 05-Jun-10 18:47:57

Hi All - hope half term has been good for everyone. Glad all the DDs seem to be doing Ok. Really pleased your DD is going to be seeing Dr Crawley Katsh.
DD finished her exams the week before half term. 1st one was good, 2nd one she found harder which she expected so now we have to wait until August!
Over half term we took DD to Brighton over night - first time she has seen the sea for 3 years ..she was very excited. On the whole it went well, a few hiccups ..like even though we had planned exactly where we were going to eat, the car park wasnt where we thought and she had to walk further than expected ..legs nearly gave up and she ended up rushing off to the loo in tears ..not the best meal. However, she bounced back the next day. Legs did pretty much give up on her return home but only for a couple of days and with improvement each day so far more pluses than minuses.

twentyoneagain Tue 08-Jun-10 20:14:53

High ladies, sorry I haven't been in touch for a while but just to let you know DD has done Lightning Process!!! Looking good so far. I will try to get on tomorrow to update you.

I hope things are going well for everyone and I have checked in every so often to keep an eye on you all.

Bye for now...

Oh Wow 21again, Really pleased it seems to have gone well. Coame and tell us all, please!!

DDs 16th birthday yesterday. Lovely to see her so happy and she managed quite a lot, flagged during the afternoon and managed to cause a bit of a row! hmm

Hope you are all doing well.

dwardle Wed 09-Jun-10 18:32:31

Oh WOW 21again. So many questions.
Remember - LP is a tool to use and practise! DD has just been back to see her practitioner one year on for an update.
She is in middle of gcses and is greatshock
Hi Positive - hope things are okay today!
Good to hear from you Choc and very pleased to hear about progress.
How is the Dr Crawley referral going, Katsh?

optimisticmumma Wed 09-Jun-10 18:34:40

21again - so pleased for you....I'm sure it will all go swimmingly - just trust in it! Did you do it with her?

DD still good although has an awful cold this week but still no CFS symptoms after 14 months! Yippee!

optimisticmumma Wed 09-Jun-10 18:36:35

x-posted with you Dwardle - great that your DD is so much better.

Hi to Katsch and Choc - glad you are making progress too...

twentyoneagain Wed 09-Jun-10 18:56:01

DD was not good. She had gone downhill really quickly with anxiety and depression related to problems at school. This led to not eating and quickly spiralled into the beginnings of an eating disorder. Although we were nipping it in the bud and making her eat, her moods were very up and down and she was becoming very withdrawn and unresponsive.

I started talking to a local lady practitioner about 3 weeks ago and we had several conversations and exchanged many texts. DD went to see her and spent some time thinking about it and finally decided to give LP a go and so she started last Thursday.

There was no visible change for two days and I was really beginning to despair - although the practitioner was very positive and said that DD was doing really well. At the end of day three I was still not very sure although I could see the beginnings of some spark. I took her shopping and she cheerfully drank a starbucks frappuccino and was good company. That night DD joined us for our evening meal and actually joined in the conversation and laughed for the first time in what seemed like weeks. By the end of the meal however, she was quiet and disappeared up to her room for most of the evening.

The next day was when the changes seemed to happen and by Monday morning she was very different. She has been focused on her school work and coped with GCSE modules this week. She is chatting cheerfully in the car and laughing with her sister. She is still not over keen to eat all of the time but for the vast majority of the time eats whatever we give her without a murmer.

She is a different girl and coped with a visit last night to the psychiatrist for a check up. All I can say is that the changes are coming through now and llife suddenly seems a lot more positive and upbeat. DD was playing touch rugby at school when I picked her up this evening and she cheerfully ate three chocolate biscuits and drank a lucozade.

There is a long way to go and I am having to type this in rather a hurry so please forgive the mistakes. All I can say is that although LP is not a treatment for eating disorders, it most certainly has changed DD's outlook (admittedly she was not dangerously ill) and I am quietly optimistic at the moment.smile.

Have to go now but will be back later. Love to you all ...

SirBoobAlot Wed 09-Jun-10 23:32:00

Hello everyone, just popping by to say hello and to hope you're and your DCs are all well

My DS is coming up to seven months, am amazed at how quickly he has grown! Am struggling a bit as he is getting heavier, and am slightly dreading him getting on the move, as I have no idea how I am going to keep up with him!!

Anyway - main reason I am here is to be very cheeky. I found a while ago, whilst pregnant, that there was no information WRT pregnancy and ME. So I have decided to create some grin Am currently gathering information from people who are pregnant, have recently given birth, and who have slightly older children to put together a book of experiences and advice. I was wondering if during your ME journeys, you or your DCs had come in contact with anyone who might be able to (and want to, of course!) help?

Sending pain-free and mobility improving vibes to all!

Chocaholic73 Fri 11-Jun-10 15:14:43

Just wondered if you had name changed ..as I don't remember your name, although I do remember a poster who had a baby. I don't have any direct experience but my DD who is the eldest child of the Mums that post on this thread knows through her various online contacts of a number of girls late teens/early twenties who are expecting or have small babies. Not sure she is aware of any particular issues/problems they have had (other than the usual ones) though. Looked on your profile and your DS looks delightful and has a very cheeky smile.
Have a good weekend all.

katsh Mon 14-Jun-10 13:55:19

Hello everyone. I'm glad to hear of good things going on for many at the moment. Seeing the sea, for choc's dd and Positive's dd's 16th birthday, and 21's succesful lightning process, and Dwardle's dd doing well through G.C.S.E. Fantastic smile. WE are seeing improvements here. DD went in to her school today for the 1st time in 7 mths. Her home tutor brought her in for 10 minutes to choose a book from a school library and it all went well. Dd even put on her uniform, and the trip in was because she asked to go. When she came home from school she read the book, coped with seeing a spider ( usually precipitates a total anxiety meltdown) , and has just been for a blood test at which she only shed a few tears. In her world these are all enormous achievements. We are now in the system to see Dr Crawley - just waiting for an appointment date.
Hope everyone has a good week.

Thats brilliant news Katsh. Hope DD continues to have more good days. It sounds as if she has really improved and has done a lot. When DD improved here we really felt she turned a corner. I hope your corner has been turned now.

At work, so shouldn't really be on here, just couldnt read and run!!

dwardle Mon 14-Jun-10 21:09:10

That's great news Katsh.
Hi Sir Boobalot. Pregnancy & ME is totally outside my experience I am afraid. I think there was someone on this thread ages ago who had a baby but cannot remember who. Anyone?
How is dd, 21again?
Must fly - no, I'm not watching football!

optimisticmumma Mon 14-Jun-10 23:09:08

Great news Katsch. Those sound like big steps for your little girl! Hope you don't have to wait too long for Dr Crawley - such a lovely person - my DD saw her in the first year of her illness...
21again - let us know how your DD is doing??
Big wave to everyone else - waaay past my bedtime!
Nightx

katsh Wed 16-Jun-10 20:25:38

Evening - just wanted to update ( while I am feeling positive) that dd attended part of her school sports today ( as a spectator) and played with some of her friends during a picnic lunch !!!! Although a little grumpy tonight she actually wasn't too tired this afternoon. We have an appointment with Dr Crawley in July - they called today to offer it. It's much sooner that I'd expected so we are really pleased. Hope everyone else is ok.

optimisticmumma Wed 16-Jun-10 22:29:32

That's great news Katsch

dwardle Fri 18-Jun-10 21:09:19

grin Katsh
Everyone else ok?

katsh Tue 29-Jun-10 20:39:48

Hello - hope you are all still doing ok. How have all the girls doing exams managed? I am cautiously optimistic here. Dd has been into school twice each week for the past two weeks. Her learning mentor has taken her in and it has all gone well. SHe has been playing a lot more, and I really think I may have seen some pink in her cheeks for the past two days despite having had late nights due to the heat. Just as well really as I need my energy to worry about my dd1 who absconded from school yesterday ( aged 10). It would be good to hear how you and your dds dss are.

dwardle Wed 30-Jun-10 18:03:08

At the risk of sounding too positive, dd is great!grinShe is just normal!
So good to hear your news about dd. Am intrigued about dd1. Is she an imp or has something happened? - sorry just being nosey - don't feel you have to answer!

twentyoneagain Wed 30-Jun-10 20:01:09

DD is ok. We still have work to do but we are definitely getting there and the weight is going on.

Dwardle - so pleased your DD is well smile.

Katsh - hope everything is ok.

Hi to everyone else.

dwardle Thu 01-Jul-10 07:50:24

Hi
21again- a few weeks on, are you pleased you did LP? am asking cos my nephew has CFS -and I think he would benefit from LP but feel I am a bit biasedgrin

bitworriedtonight Thu 01-Jul-10 14:13:11

Dwardle - really pleased your dd is so well. 21 - I'm glad that things are ok and dd is gaining weight. As to my dd1, she is not an imp ( well not at school anyway grin) so walking out was quite a big statement. She cannot say why she did it, but I think the underlying reason was utter boredom. She's a v. bright girl and having had to cope with her sister's illness and her own neurological mobility problems in this past year, she really can't see the point of sitting in a room, where no-one seems to care whether or not she does the work, or gets it right. Her teachers take the view that as she's at the top of the class they must be teaching her well, but she's really not engaged at all. We are now concerned that having left once she could do it again ( even though she says she won't), and it indicates to us a deep level of unhappiness/ discontent. I've spent this morning at another school, and despite a meeting with the head and a discussion which I thought was helpful, he's come back to me today saying - she better not do it again, and some teachers just don't know how to teach able children. I know some of you teach/ isn't someone a head? I'd love your thoughts if you've got any on the subject . just to make you laugh - I think dd2's recovery continued - today I wondered what the funny noise went - I looked and she was hoovering the stairs !!!!!

katsh Thu 01-Jul-10 14:18:55

sorry about previous post name - I'm rubbish at the name change thing !!!

dwardle Thu 01-Jul-10 18:11:57

Hi Katsh
Interesting!
I really laughed at the idea of your dd2 hoovering the stairs!
Questions (sorry - am very nosey and a Primary Head!) - what year is yr dd1? Did the Head say some teachers don't know how to teach bright children or was that you?
Were you looking at another school for her?
I agree about your concerns and think it is quite worrying. Is she on her own being bright or is there a group of bright children? What is school's ofsted like and how do their SATs results usually look? esp % of L5s? (can find that via bbc news website - go to education and follow primary league table links)
Really understand this - ds HATED primary school - said he just wished they would teach him something he didn't already know. High school much better.

Hi all,

So good to hear such positive news from everyone. grin

We have just returned from a week in Greece. DH was best man at a friend's wedding so we extended it and had a bit of a holiday too. DD3 has coped really well. She did so much more than we expected. smile She's struggled through the 14 hour travelling and is very pale and lathargic today, but so am I!! wink

I found out the day before we went away that DD3's new child disability team worker is the lady that ran off with my DSis's husband, leaving her with 4 DCs! angry Not sure how to handle this now. I had wanted to keep them on board to make it easier to get some help if she needs it on her college course in September, but now I just want to tell them to leave us alone. I certainly dont want her in the house nosing into my family business. (sorry, little rant!!)

dwardle Thu 01-Jul-10 19:37:34

Hi Pos
Can you contact her manager and just say conflict of interest? Is there another one?
So glad you had a good time in GreeceenvygrinI've got 3 weeks to go - stress!!!!!!!

twentyoneagain Thu 01-Jul-10 21:43:36

Dwardle - I am all for it. I didn't do LP with DD but I know enough about it to see how it works and why. The only problem is that the patient has to embrace it and work at it. DD has been up and down but I know she has been using it for some things. Eating disorders take over lives and are very hard to get rid of. The practitioner is in regular contact with DD and is encouraging her. It can change lives but only if it is applied regularly. I do hope your nephew can do it smile.

Katsh sorry to hear you have more problems but really glad DD2 is improving.

Positive glad you had a good holiday.

katsh Thu 01-Jul-10 22:21:43

Hi Positive - glad your holiday was good. I hope that dd3 picks up from the journey quickly - well done for taking a holiday! I'd ask the same questions as dwardle re. the lady - it sounds untenable, but I quite understand that you don't want to lose the support.
Dwardle - sorry my post was slightly incoherent - trying to hold two simultaneous conversations with children whilst typing never works grin. dd1 is yr 5; yes the head of her current school made the comment about teachers in his written response to me; yes I did go to see another school today - but private not state. dd is currently in a state school.
Got to go. DD2 vomitted tonight which is sometimes a sign that she's taking a downward turn confused so best get to bed in case I'm up in the night.

dwardle Sat 03-Jul-10 07:41:20

Hi
Katsh - cannot believe the Head put that in writing shock Have you decided what to do? I think there must be issues about the school if that was written. Not all state schools are like that, honestly!
Hope dd2 is okay today

katsh Sat 03-Jul-10 20:45:09

Thanks Dwardle. Your judgement on the head's comment reassures me that my own judgement is not utterly skewed. We are going to suggest to dd1 that she spends a day at the possible new school this week to see what she thinks. I think (hope) she will love it. Dh and I discussed it last night and we do feel a move would be the best thing for her, even though it's only for a year. I do feel a real sense of peace today about it, so we hope that she will feel the same way. There have been a lot of problems with school. The slight catch is that even if we move dd1, dd2 is still on the role and it is where we are trying to re-integrate her. I do think that when she too is well we may need to move her, but it would be tricky at the moment. DD2 did have a dodgy 24 hours with some kind of tummy upset, but is picking up now. I am treading very cautiously so she had a pyjama day yesterday, and has been either in the garden or her bedroom today. She seems quite perky, but I know from bitter previous experience that if she does too much at this point she will have quite a set back. I'm going to use her appetite as a guide to when she is ready to do a bit more again. Hoping it won't be long. Hope you are having a good weekend.

dwardle Sun 04-Jul-10 09:51:44

Hi Katsh
Am so glad you have sorted something out for dd1 - your judgement is spot on!
Hope dd2 is feeling okay this am.I think it sounds very sensible to go at her pace.
My dd is off at a carboot sale with her Dad! Heaven knows what they will arrive home with - is usually books and plantssmile.
Have a good day and keep us posted on how the trial day goes

DawnsOwl Thu 08-Jul-10 19:01:13

Really glad to find this thread.

My DD is 22 and has been diagnosed with M.E. since she was 16 but first presented with symptoms at 14.

She certainly hasn't had an easy time of it. Her GP pushed forwards with CBT which for her didn't work, and as she had so many problems with her mobilty her physio decided to start her on GET which worked really well for her. That took her to the age of 18.

At 18 she then contracted Glandular Fever and she then hit her lowest point of functioning and was fed via an NG tube. Over the last 4 years we've been playing the 1 step forward, 4 steps back game. Every small thing she has landed herself inpatient for.

If you caught my thread in Education. She has been accepted to a London drama school and we're currently fighting each other and the system to get some support in place for her!

Hoping you and your DC's are doing as well as possible!

Hi Dawnsowl and welcome here.

Sorry to hear your DD has had such a long struggle with CFS/ME. Feel free to come on here and share with us. We are all at different stages of the journey.

How is everyone else doing? All gone quiet, so I hope that is a good sign for everyone. Exams overwith?
Here DD is doing surprisingly well and I am even beginning to relax and believe that we wont take a drastic dip ....... fatal last words!!!!

Katsch I hope your DDs improvement is continuing.

Dwardle Hope you are not too stressed out with your last few weeks at work. smile

Chocaholic73 Sat 10-Jul-10 13:57:41

Hi All - hope you are enjoying the sunny weather (at least it is here in the south east). Welcome to Dawns Owl ..uptil now my DD has been the eldest on the thread, but yours has now over taken her. My DD is 18 and has had ME for 3.5 years and hasn't been to school since then. At her worst she was bed bound, she is a lot better now but has a long way to go, currently has just done AS Maths with Nisai (online learning). Through using the Perrin Technique, she has progressed to being able to go out on a strictly limited and paced basis. Yesterday she managed the hairdressers and her therapist and earlier in the week she managed an AYME meet up for 3 hours which is fantastic when I look back to where she was. I'm interested to hear your DD is hoping to do drama ..I will look on your Education thread in a minute ..that has been one of my DDs dreams, although I think my DD now just wants to do it as a hobby.

Chocaholic73 Sat 10-Jul-10 14:06:47

Dawns Owl ..just tried to find your post in Education and am clearly going senile as I can't find it - can you point me in the right direction please!

Hi everyone,

This fell off my "threads I'm on" list, so I though it was time to come and see if everyone is doing well.

Hope all DDs are still doing well and enjoying the summer sunshine after the stresses of school/ exams etc.

DD has been really good here - the best for 2 years!!!! WHooooaaaaaa!!! Although last week I nearly came on for a hand hold when she took a massive dip, just to remind us that she is still not well! - just as I was relaxing!!! angry Today's the first day of her being back on track again, so hopefully it was just a minor blip.

Have a good summer everyone. Dwardle, have you finished your old job yet?

Chocaholic73 Fri 23-Jul-10 14:39:41

Hello All - like you I couldn't find the thread Positive ...in fact I had to do a search on it, but now I see you posted a couple of days ago so I don't know how I missed it!
Hope your DDs blip is minor Positive and everyone else and DCs are all doing OK and enjoying the summer. DD has had a bit of a rough time with headaches, leading to a huge amount of neck tension in addition. Ended up being put on Tramadol by the GP which she reacted to badly. This was while our Perrins practioner was away on extended leave but fortunately she's back now and DD is already far more comfortable.
Keep posting everyone!

katsh Wed 28-Jul-10 22:15:29

Hi all
Positive - great news that your dd is doing so well. I hope the blip is a thing of the past. Choc - hoping that your dd is remaining more comfortable again.
I wrote a long post earlier and it was lost, so this will be brief. We saw Dr Crawley yesterday : good because she understands a lot and helped us to understand a lot; good because she thinks dd's outcome will be very positive; hard because she said managing younger ones is really very difficult, and she thinks dd can only manage 30 mins physical play/ socialisation a day. Tough when you're 8 and it's the summer. We are trying to figure out if we can still go on holiday etc. Haven't quite absorbed or processed all the info yet. Also a bit shock because right at the end she said she thought dd might have a syndrome and we need her heart checked out, and we may should see a geneticist. That was certainly out of the blue.
I hope that all who are quiet are having a great summer .

Chocaholic73 Thu 29-Jul-10 10:26:32

Lot's of good news there Katsh - Dr Crawley is very positive and tells you what the serious pacing means in terms of real life. Unfortunately, it is down to us to implement it which is very very tough when you have a DD who wants to do what 8 year old's do and play when she feels like it. It can be very difficult but it got my DD from a point where she couldn't stand up let alone walk anywhere to a point of moving back upstairs to her bedroom (she had to sleep downstairs) and being able to go up and down 3 or 4 times a day. It is worth it. Re the heart stuff - I feel really sorry for you - it is obviously not her specialist area but it might account for some of your DDs issues and if you got it sorted/managed through getting it investigated, it might improve things ..quite possibly some of the issues your DD has are not CFS/ME. Did she point you in the right direction for someone who is an expert ..I do hope so. Keep smiling smile.
Hello to everyone else ..hope you're all doing OK

katsh Thu 29-Jul-10 12:16:53

choc thanks for the encouragement. It's good to hear of the difference it made for your dd. We just have to work out how to manage it all.

Cuppycakequeen Fri 06-Aug-10 02:04:17

Hi, I've been reading this thread and the previous one, trying to come to terms with 12 yr old DDs diagnosis of CFS/ME. I can't say it was a shock because I've known for a long time she was ill but now it has sunk in I feel like she's been given a bit of a life sentence.

It's made me feel a lot better to hear what good recoveries have been made by many of the children talked about on here.

I'm trying to decide now what to do for the best - the Paed consultant we saw suggested that she will only be able to go to school for one or two lessons a day but I dont know if DD will even cope with that.

I'm just waiting now to see what support the hospital will be able to offer us - because i live in the west country I was wondering about contacting DR Crawley, but everything feels very overwhelming right now.

Sorry to ramble - I'm a single parent with three children (DD is the middle one) and I feel very lost with all of this.

Chocaholic73 Fri 06-Aug-10 09:38:10

welcome cuppycake ..looks like you were having a sleepless night over it. This thread is very quiet atm but hopefully will get a bit busier again soon. It must be tough being on your own with this sort of dilemma (I have to say it's been me really that's done all the research and made all the decisions in association with DD as she's older, but it has helped to have someone else's ear to bend who also sees what she's like). Only you will really know if your DD is up to doing 1 or 2 lessons in September because you are the one with her all the time. I know of many cases where pushing them to go into school has made them crash totally - my DD is one of them. Lot's of well meaning "just get her in for a couple of lessons ..it'll give her a change of scene and a chance to see everyone". I read somewhere that 1 hour of school is about equivalent to a 3 hour shopping trip in terms of energy which shows how draining it is for our children. I would very much recommend Dr Crawley (and there are others on here who would too). She will break the pacing down into detail and tell you what level you should start at - paeds may be sympathetic and even be knowledgeable but in general they're not experts. Hope this helps, ultimately the decisions are ones only you can make but this thread is brilliant for support because we know what it is like. So do come back and ask anything you need to.
Hello all ....hope everything is going well smile

katsh Fri 06-Aug-10 09:58:28

Hello cuppycakequeen. So sorry you have had to join us, but I hope that you find this thread a help. I'd have been utterly lost without it over the past year. My dd is now 8 and was diagnosed just over a year ago. We just saw Dr Crawley last week and I would definitely recommend getting a referral to see her. GP's can refer to her through the choose and book system. Having had various paediatrician/ nurse etc advice over the last year it was great to see someone who really knows what she is talking about! As to school - again Dr Crawley was able to give us really good guidelines to follow to know when DD will be ready to cope with school again.
I really feel for you with 3 on your own and CFS to juggle. What ages are your other two? I have a dd of 10 and a ds of 2, and it has been mighty tricky to manage. I remember when dd was diagnosed having many sleepless nights and days when I couldn't eat as it was all so overwhelming. Do you have family/ friends around?
Keep posting. Hope today is a reasonable day.

Hi Cuppycake and sorry that you have had to join us, but you are very welcome and I echo what the others have said this was the one place that kept me sane over some really tough few months - in fact it was the reason I joined MN.

My DD is now 16 and she was seen by Dr Crawley, who was really good at putting a stop to the downward spiral and then we really turned a corner.
As for school, I can understand your confusion and concerns. For months we clung on for DD to attend and had a huge amount of stress through it all, then when she did give up totally in year 10 (November) it was such a huge relief for her and for us. We had not realised how much more it was putting on her and us. She never was able to return to the school, but had home tuition when she was up to it, and this last academic year she has been attending a specialist unit which specialises in CFS/ME patients. It was brilliant and I realise we were very lucky to have that facility. She was only up to 3hours a week with 1 hr home tuition. In Septemebr she is hoping to be able to do a college course to catch up a bit academically, for 11 hours a week.
It really is not the end of everything if your DD has to give up school for a while. Yes, some things may be missed, but it is better to get her health sorted and she WILL get better from this.

I am pleased you have found this positive thread and you can see that this is not a life sentence for your DD. Things really WILL improve and she will have a good quality of life again.

Does your DD have good friends? Do they understand how she feels and keep in contact with her?

Yes it is all quiet on here at the moment, isnt it? Hopefully because we are all having good times.
Here, DD went into town this week, which was a huge achievement. Last evening she went to the Cowes Week finale fireworks, but she got attacked, so not a good evening. It seems so unfair that this happened to DD, who so rarely gets out of the house. i just hope it doesnt knock her confidence. sad

Hope you are all doing ok and are managing to enjoy some summer holidays.

Cuppycakequeen Sat 07-Aug-10 13:25:01

Thank you all for your support, I think the shock is starting to wear off a bit now so Im starting to think a bit more clearly now. I think part of the problem for me is that I want to do something. I think that getting a referral to Dr Crawley would be a positive place to start.

My natural instincts are to let DD pace herself and I dont want her to be pressurred into going part to school - she was alot worse when they kept trying to send her homework and catch up stuff.

Her Dad has taken her out for the day today and she always overdoes it to please him so I know I will have a very poorly little girl on my hands this week. I have invited some of DD(age 7) round to play and organised her to go out with my Dad for a day so hopefully I can still make sure she has a good holiday even if I have to stay home with DD.

Take care all - its good to hear about the progress your children have made.

twentyoneagain Sat 07-Aug-10 15:30:36

Hi Cuppycakequeen, I'm sorry you have had the need to join this thread but you will find a lot of information here from mums like yourself who have been and are going through this awful time.

My DD has recovered from CFS by resting and pacing. There are others who have done the Lightning Process and have found it to work well. It is not for everyone but can really make a difference for some.

Dr Crawley is a respected authority on CFS and an appointment with her is a good idea. We also found that keeping a diary helped us to look back and recognise symptoms and stresses. Stress plays a big part in this illness and I think the others will agree with me that it needs to be avoided as much as possible right now. There are various alternative remedies that some find helpful - my DD used to see a homeopath - and I also think that good nutrition is important. Another good Doctor is Prof Findlay - I can't remember exactly where he is located but I can find out for you - he has been very good for the DS of a friend of mine.

Remember that your DD will get better although it can be a long drawn-out recovery.
School will have to wait for a while until your DD feels strong enough. Our DD missed a lot of years 8 and 9 but started back slowly and has been full time since the start of year 10. She did change schools at that point but had been a day girl at a private boarding school where the long hours and weeks were just too much.

Hi to all the others, we have been busy here ensuring that DD puts on weight (ten pounds now) and she is looking much better for it. She has just booked a hair appointment for herself - to have highlights put in - and is planning events with friends. She went through a tough time but is getting there, and speaks to her LP practitioner every two weeks for support. She is also working two days a week for DH and has a regular weekly babysitting job for the Summer.

It is so good to read of the improvements that many of you are experiencing but Positive I am so sorry to hear of the nasty time your DD had. I hope she can get over the shock and does not suffer because of it.

Look forward to hearing from you all..

Hi*21*, so pleased to hear all positive things about your DD with the weight, the jobs etc. it all sounds really good for her. Well done, both of you. grin

twentyoneagain Sat 07-Aug-10 17:56:56

Thanks Positive - how is DD now?

A bit of a dodgy day, really - emotionally and physically. Hope things will bounce back quickly over the next few days. She choked at tea time, which is normally a bad sign of things really slumping, but I am hoping it was just a one off bad moment hmm. <<ever hopeful optimist>>

Chocaholic73 Sun 08-Aug-10 10:41:27

Positive sorry to hear about your DD's bad experience. Hopefully she will bounce back.
Twenty One Again glad your DD is doing OK.
CuppyCake hope your DD isn't too tired after spending time with her Dad. Is he "on board" with the CFS/ME and involved?
My DD hasn't been so good lately - she is having very bad headaches and the last week or so also seems to have had a virus, although that seems to be going now. However, we are all looking forward to our first family week away for 3 years - we have rented a house overlooking the water so DD will be able to watch the boats go by if we go out and leave her behind.
Have a good day All.

dwardle Wed 25-Aug-10 12:02:58

Just a quick post - dd is now the proud possessor of 6 gcses - an A, 4 Bs and a C! We are all so pleased for her - and a bit shocked that she got b for biology which she learned rather half heartedly from the cgp guide!
Hope you are all okay and having a good summer - also hope that PA's dd has recovered from her horrid experience. Have been away - will post again properly soon.

Chocaholic73 Wed 25-Aug-10 20:13:11

Congrats to your DD Dwardle, she has done really well. My DD got an A in her AS Level Maths. She has had a really rough month (apart from doing well in her exam!). We think she had a virus at the beginning of the month, but it really knocked her for six. She is only now getting her appetite back and just starting to be able to get out again. We are off on holiday on Saturday which we are looking forward to. Hope everyone has enjoyed the summer.

twentyoneagain Thu 26-Aug-10 07:32:41

Congratulations to both your DDs grin, they have done tremendously well and deserve those results. I am so pleased for you all.

I too hope Positive's DD is ok.

Enjoy the summer everyone - what's left of it!!!

dwardle Thu 26-Aug-10 16:41:27

Fantastic news, Choc - what a star!Hope the holiday really helps your dd to feel better - and I hope it stops raining (think it is forecast to by Satgrin)
Thanks for your message too, 21. Hope evryone is smiling in their thermals!

Dwardle and Choc, thats fantastic news. smile Really pleased for both of your DDs.

DD3 has been ok since her attack, thanks.

We have had a good summer. She has been able to go out a bit, has been in town even twice, which has all been good. We still have bad days, today has been the worst for ages. Not sure why, maybe just an accumulation of doing general things over the holidays.
I am sure she will bounce back quickly, though.

Dwardle good luck with YOUR new job, too. smile

Waves to everyone on here. Katsch how are things with your DD?
Choc hope your DD bounces back quickly, too.

twentyoneagain Mon 30-Aug-10 16:50:52

Positive - So glad your DD is ok and I too am sure she will bounce back from this slight downturn. The general trend is upwards and she will get there smile.

How is everyone else doing?

katsh Fri 03-Sep-10 09:24:18

Well done Choc and Dwardle on the exam results! Positive - hope your dd has picked up again. 21 - hope you've had a good summer and dd's return to school this term goes well. Cuppycake - how are you?
We've had a funny month - after seeing Dr Crawley we realised that we shouldn't be taking dd2 on our planned holiday, so I have been away with dd1 and ds, and dh stayed home with dd2. dd2 has increased her baseline of red activity from 4 1/2 hrs to 5 1/2 over the month so that is encouraging. However dd1 is back to school from today so we are now back to doing school run journeys etc so that may have a rather negative impact. Dr Crawley said no school until she can do 2 hrs daily so we are not attempting anything yet. Home tutor will start again next week and is planning to come every day for 30 mins. I have to say she does look dreadful at the moment, but is in good form, so hopefully she's ok. I hope everyone has a good weekend.

Cuppycakequeen Sun 05-Sep-10 00:23:33

Hi all, glad to hear about the good exam results. I've been into DD's school to see how we are going to manage her education this year and I have to say I was pleasantly surprised. The school was completely on board and very knowledgable about CFS/ME. They are happy to accomadate DD doing as much or as little as is needed probably a hour a day to start with, they are going to provide TA support for when she does go in and a link tutor to keep her in touch as well.

I went in all hyped up ready for a fight and they just bent over backwards to be nice and positive.

We are getting geared up for our first support group meeting on wednesday but the two ladies I've spoken to so far sound really lovely.

We've had a bad week this week as far as the CFS goes - she has been so weak I've had to cut up her food and give her drinks in a sports bottle. Her Dad has been more supportive and took the little DD off for a couple of days which helped.

She is better today although actually she is more grumpy and miserable on her better days than when she was really bad!

Catch up with you all again soon xx

Cuppycakequeen Mon 06-Sep-10 16:40:41

DD still not well enough to go to school even if she only has to do an hour a day. I'm trying to fill in the DLA forms and its very difficult because she can vary from day to day. I have to say she's been so much worse lately.

Ex-partner came to take her out for the evening and it took her two hours to get dressed,I wish he could understand I'm not trying to be difficult when I say shes too ill to go - I know that the effort of just going to a different house for the evening means she wont be up to going to school again tomorrow, maybe even longer.

She was crying when I brushed her hair - is scalp sensitivity a common issue with CFS do you know? I feel very low at the moment - its bad enough when they go to him anyway let alone when she is so ill and upset.

Sorry for moaning, hope all your dds are ok, love Cuppycake xx

Chocaholic73 Mon 06-Sep-10 17:01:46

Hi All - we had a great week near the New Forest last week and DD did really well. We did end up using the wheelchair so she could do more rather than get worn out moving from one place to another but she accepted it (which she won't at home). Since we got back, she has been very tired but well in herself which is also very positive.
Cuppycake - DLA forms are awful to fill in and very depressing. It is very important that you tell them everything, don't assume they will realise and use terminology such as "on a bad day" and "on a less bad day" - definitely don't say "on a good day". I wish you the best of luck with it. The citizens advice bureau can help you with filling in the forms too.

twentyoneagain Mon 06-Sep-10 17:45:35

Cuppycakequeen - sorry to hear about your ex-partner's difficulty understanding all of this. It is not good that activities with him are causing your DD to feel worse. Have you got an appointment with Dr Crawley yet? It may be worth taking ex along if you have. He also needs to be given some information about CFS so that he can be more sympathetic towards both yourself and DD. Maybe you could persuade him to look on some of the websites - A.Y.M.E. and the M.E association spring to mind.

You could also refer him to this thread and our previous one.

Keep posting..

Hi Cuppycake, My DD had really bad scalp sensitivity and we didnt brush her hair for months because it was just all too bad for her. We saw Dr Crawley who explained to us that the scalp sensitivity was the brain over-reacting to stimuli and sending signals of pain. She explained that if DD could start to do very small touches and gradually massage starting at the temples, then gradually getting all over the whole head, these messages would be reverted to not overreaction. (sorry, not very good at explaining) DD was thrilled that she could actually do something to help herself and really took this on. Within a few weeks she was able to massage her whole head and it was so much better. Still on a bad day she will sit and massage her head as she feels she is doing something positive and taking control of just a small thing, but after feeling so out of control, it was a real boost.
Sorry, I am sure you have said, but how old is your DD? Dont worry about school. I know its easier said than done, and it took me ages to accept this, but just forgetting schooling was the best step we did for a very long time.

Things are sounding more poesitive with you Katsch, I'm really pleased. Hope it continues.
Really pleased that you had a good holiday choc and I understand the wheelchair issue!! That is so much like DD here.

DD starts college in the morning and is already in bed in preparation. I phoned up about her getting a bus pass, which would help us a lot, but she is refusing to use it if it has the words "disabled" on it!! Stubborn as a mule!!! We are hopeful she will manage the 11 hours a week, but we will see. She is as determined as ever!

Cuppycakequeen Mon 06-Sep-10 23:59:45

Hi all, its so good to heasr your views and opinions. Thanks positive for your advice re scalp massage I will suggest it to her in the morning. Choc I'm having the same probs with getting dd to accept using a wheelchar to go out - at the moment she prefers to just stay in - she's 12 and find everything terribly embarrasing.

Twentyone I havent made the appointment with DY Crawley yet because I want to have our first appt with the Occupational therapist and see what she suggests first. Its not just DD who can only handle things in small doses!

Feel abit better noww but i've got to get these forms sorted -I'll never be able to afford to drive her to school and back everyday without some help. Although to be honest I cant see her managing it just yet anyway.

Take care all, cuppycake xx

Big day in Positiveattitude household today - DD3 is having an induction day at the local college. Preparation for today has already exhausted DD out!

She's had her hair cut at the hairdressers for the first time in over 2 years as she was well enough to sit there and have it done grin.
We went and chose a whole new wardrobe of new clothes that actually fit her and she looks gorgeous. (slightly biased!!hmm)

This morning she woke at 6.30 and has had a shower, then a sit down for an hour (fell asleep) to recoup her energy.
TBH I think this is all a bit much, but DD3 is being as stubborn as always and I have learnt that I have to let her realise this for herself and be there to pick up the pieces, whenever that will be...... but I need to be positive and encourage her as much as possible until we reach that point!!

Waves to you all. grin

guineapiglet Tue 07-Sep-10 16:26:27

Dear All
Would you mind if I crash your thread? I have just posted under 'health' trying to get some ideas about my daughter ( I will try and write it all again..) but the jist is that we have a wonderful 14 year old who was hit hard by a non specific virus back in May - it knocked her sideways, and our vivacious lass has not really been her sparkly self ever since = she ended up missing a month off school and has given up all her extra curricula activities sadly because she is so very tired all the time. We have been back and forth to the docs, blood tests etc, but nothing specific diganosed. She is very tall and has very low BMI, grown about 3 -5 cm in one year, shes so self concsious about herself. Peers have not been too supportive and she was left to herself pretty much over the summer hols.Great.
Docs do not seem to want to make diagnosis, but she is now suffering from recurrent panic attacks and anxiety, brought about by virus apparently. Desperately want to support her as she is starting Y10 and needs all the energy she can get. She WILL NOT lie in, she is always up at 6.45 every day and not like a 'normal' teenager who sleep as an when needed, she is a lark, and is usually in bed by 9 every night wiped out. Am I in the right thread, does this seem familiar to anyone else. Find that my own friends are pretty disinterested, or at least they ask how she is and thats about it...Any ideas would be happily and gratefully received.

Cuppycakequeen Tue 07-Sep-10 20:23:04

Hello all,
positive really glad to hear your daughter is looking well, I'm sure she looks beautiful in her new clothes.

Hello guineapiglet I'm sure you're very welcome over here although your daughters times for being sleppy and being awake vary she does sound very like mine otherwise. My original docs were really unhelpful but i finally found one who listened so dont give up! It seemed to me to be a case of ruling out everything it wasn't to find out what it was.

I guess maybe you should push for a paediatric referral if your GP isn't coming up with any useful answers.

Getting my DD ready to go into school for an hour tomorrow, I've just printed the Tymes Trust teachers guide out for her to take in - it seemed a fairly sensible document to explain what is going on with her. (*guineapiglet* have you checked out this site yet? Its very helpful)

We went for a quick trip this afternoon to pick up new pencil cases etc and the DDs had a huge row in the car

Oldest dd(15) kept insisting that dd is faking it and she doesnt need to be in the front all the time and then little dd(7) weighed in to protect her sister who just burst into tears - I hope it wont affect her being able to go in tomorrow because she is desperate to see her friends.

Hope you are all going on ok, take care, cuppycake xxx

Chocaholic73 Tue 07-Sep-10 21:18:37

Cuppycake and Positive hope school and college go well ...and also for everyone else.
Guineapiglet - welcome to the thread, you are not crashing it ..it is here to support those who need it. A lot of what you say is familiar but possibly there may be something in the low BMI and growth spurt as an alternative. I know how hard it is but you need to keep pushing for answers and a referral, probably to a paediatrician in the first instance. As Cuppycake has said, the Tymes Trust website is good plus also the AYME one but I am hoping, for yours and DDs sake, that there might be an alternative. Unfortunately, in my and my DDs experience girls of your DDs age are not particularly sympathetic and don't tend to stick around, although of course there are exceptions. Do let us know how things go for your DD.

katsh Tue 07-Sep-10 21:25:07

Hi guineapiglet - crashers most welcome here. I'm sorry that your dd has been unwell. Total fatigue and a lack of diagnosis is certainly something you can come and talk about here! Has your dd started school again this term? How has it been so far? We are all at different stages with our children on this thread - my dd is 8 and was diagnosed with CFS 14 mths ago, following a post-viral downhill period when she lost a lot of weight and became totally lethargic, very unhappy, headaches, muscle aches, nausea etc, missed school, and after a lot of negative test results she was given the diagnosis. What tests have the drs done so far? I'm sorry your friends ( and those of your dd) haven't been very supportive. I think most of us have found that that is often the case - I think people think fatigue can just be "slept off" and then the kids can pull themselves together and get on with it. Keep posting here if it helps.
Cuppycake - I'm sorry that your dd is so exhausted - I hope that she makes it to school tomorrow. It takes a lot out of everyone doesn't it - not just the sick dd but her sisters too.
Positive - how did your dd's induction day go?
My little dd has struggled a bit with the return to routine - not hers, but her sister and brother, as she now has to sit in the car for the school run. She was fairly wiped out today, and as it was her best friend's birthday we had arranged for her to go for tea for 1 hour. She did go, and had a lovely time, so I am hoping the impact won't be too big from that as her home tutor starts again tomorrow.
I think I'm feeling a bit confused and tired with it all at the moment. Hope everyone has good days tomorrow.

katsh Tue 07-Sep-10 21:26:11

Choc - cross posted. How is your dd?

Cuppycakequeen Wed 08-Sep-10 10:33:58

Sighs - well she didnt make it in. It took me half an hour to get her to oen her eyes this morning - totally wiped out again. I might give up on school for a bit - I dont want her to get worried about it.

ME support group this afternoon, I think I'll go even if shes not up to it although she does perk up a bit in the afternoons sometimes.

Hugs to all

Cuppycake xx

Hi all,

Guineapiglet - You are most welcome here and I hope we can help you and point you in the right direction, or just be here for you to rant at!! (reading back through this thread may be a good idea as we have all come a long way!)
My DD was 14 when she was first ill, too. She is now 16. It may be worth speaking with the AYME people and getting armed with some research to go to your Dr and get a proper diagnosis, then you cna get referred and start some proper help.
I keep on saying it on here, but here I go again... Dont worry about education!! Health is so much more important. DD has basically had no proper academic education for 2 years (yrs 10 & 11) and is now going to college to do a small "catch-up" year, without any pressures. Giving up on school was the best thing we did!!

Cuppycake - My DD was just the same... more grumy when she was having a better day! We used to say that when she was really bad she was too unwell to be grumpy!! I even spent a number of weeks wishing she would be grumpy again as I would klnow she was improving hmm.
Also the siblings arguing, my heart goes out to you. Exactly the same here. It is such a difficult illness to understand. DD's Sisters dont understand that she will put all her effort into havign a friend visit for an hour, then crash out afterwards and be unable to empty the Dishwasher, or something. I understand, but it is so hard getting them to understand!

Katsh - Being in car is red activity, IIRC, so it will tire DD out.

Dd enjoyed her day at college yesterday. Crashed out last evening and was in bed before 8! Dead grumpy this morning, and no college today, so she can relax today, ready for tomorrow. Normally she will be doing Monday morning, Tuesday longer day,and Thursday morning, so it is probably the best combination we could hope for her. (11 hours total) with days to recover in between. - Also boyfriend has Wednesday's off, too so DD is doubly happy about that!!!

I am at work at the moment, so I'd best go and get something done.

Hope you all have a good day, grin.

Chocaholic73 Wed 08-Sep-10 10:49:59

Katsh sending you hugs ...do you have anyone you can talk to in RL? I really feel for you as you obviously can't leave your DD at home while you collect the others as she is too young. Hope DD is OK today.
Cuppycake it is a very hard thing not focussing on school. As caring parents, we are told from the word go, how important education is but, actually, health is even more important. I think the thing to remember is if your DD isn't feeling great, she is not really going to be accessing what she is being taught at school anyway. Education can always be made up in the future anyway. Do you know about home tutors - I think from memory that once a child misses 14 days schooling consequetively, the Local Authority are legally bound to provide a home tutor for 5 hours a week(it is called hospital and home education where we are, but may be different where you are). In practice, it takes a while to organise but it would be far less taxing, the whole getting to school and just being there is hugely exhausting.
Hope everyone has a good day today.

Chocaholic73 Wed 08-Sep-10 10:52:58

Positive cross posted with you - glad DDs day went well yesterday.

x-posted with you Cuppy, sorry its not a good day. I would go to the support meeting. This thread was the only support I had, and I found it brilliant. I didnt want any doom and gloom groups, though where you never hear positive stories and positive outcomes from CFS. (hence my nicknmae on MN wink) I found it far more helpful to read here about how others were coping and getting through this, not just how crap their lives were!!! I hope your support group is a positive one.

Dont worry about schooling <<<stuck record, me-thinks!!>>> I cannot say this strongly enough. I know its hard it took me months of struggling to get my head round it. I would wake DD up, sometimes could not even do that!! And she would come home from school absolutely knackered, or I would be called to go and get her (if they allowed me to, or if they believed her!! angry) and whatever I did I felt guilty about, and worried about her future etc, etc. As soon as we gave up, the pressure was off, both of us and it was only then I realised how pressured we ahd both been about it.

Thanks choc - gosh, hive of activity here this morning, its been quiet on here for weeks, now we are x-posting each other!! grin

How is your DD?

guineapiglet Wed 08-Sep-10 11:15:06

Thank you to all for your really helpful words - feel a bit tearful as I write this, because it is such a relief to know that you all understand!!! The school thing is a huge issue isnt it, she has gone back to school, bless her, but looks so exhausted on her return, periods are heavy and so there are a lot of contributing factors at this tender age. I guess a routine does help, trying to rest when she comes in, doing a bit of homework, some time chilling in front of the tele, and from what you have all written, some days are good, some bad but what I was feeling bad about is how it affects me, and our other child who is 5 years younger and is not very understanding some times. In short, thank you for your welcome and your care, it is very reassuring to know that there are strategies, there is support and we can get through this X

twentyoneagain Wed 08-Sep-10 16:29:06

Guineapiglet and Cuppycake - my DD has well and truly recovered from the cfs and you are just beginning this journey. One thing that we found to be invaluable was keeping a diary of symptoms and daily happenings. At the time I wasn't sure what benefit it would give but when DH and I sat down one night with his calendar, my calendar and the diary we became aware of events that were causing stress - things we hadn't noticed at the time. Stress is the one thing we needed to eliminate.

It also helped to look back and realise that she really was improving.

A friend's son has had good results after consulting Professor Findley (google him to find out more). You do not need to live in his area to see him as far as I am aware.

I understand your tears, I shed plenty of them myself, and this is a very difficult time for you all sad. Remember your DCs will get better and if you read through this thread and our original one you will find plenty of information. Keep posting..

CCQ How was the support group? Was it your first time?

dwardle Wed 08-Sep-10 22:38:51

Hi
Sorry have been out of it - just skimmed through all the posts.
Guineapiglet - my dd suffered terribly with panic attacks - so bad at one point we ended in A&E. Upshot - cut right back on school, got referred to CAMHS for CBT - ask me if you need acronyms explaining. When a child has a panic attack, brain shuts down and so being in school is a waste of time anyway. Sorry to sound so blunt but it's actually some kind of chemical thing in the brain - fight, flight mechanism.She WILL get through this but making her do things will only make it worse, says me speaking from bitter experience.
There is Hope - dd started 6th form yesterday, doing 4 as levels and is glowing and so happy- she has hardly been to school for past 2 years - it started Oct 2008, just like you described. Are you in line to see a paediatrician - makes life much better if you have a diagnosis. Put foot down and ask for paed referral.
Just rereadthis post and sound very bossy - sorry grin
Going to go now as need to sleep - new job ace but challenging. know anyone who speaks Hungarian?! Sorry have been away - will catch up more at weekend.
Send all big hugs - both old and new

dwardle Wed 08-Sep-10 22:46:37

Forgot to add that in my opinion, life gets easier for the dcs when you remove the stress and pressure of keeping up with education AND it is not the end of the world in any way. i found out about all sorts of people who did really well post cfs and my dd has moved on. Fewer gcses won't stop her going to uni. I am in education and this was a hard lesson for me but one that I HAD to learn to start to see any improvement in dd. They do go back to it when they are better, honestly - read this thread to see!

guineapiglet Thu 09-Sep-10 09:43:04

Hi there and thanks for your hopeful message. Would help to have some acroynm explanations - we have been referred to local child mental health team re panic attack ( I assume that is the CAMHS bit - what is CBT?). Daughter extremely tired again after school, looks very pale. SHe has chosen a tough pathway at school with separate sciences and 12 GCSEs altogether which I feel is just too much. We have looked at her 'future' career of choice, to do a degree in conservation/zoology/animal management etc ( prob at an agricultural college) and have talked about just concentrating on those subjects she wants to do well in, others, as you say, not so critical. Just want her to be happy!!!!! Doc gave us a really helpful leaflet prepared by Northumberland NHS simply entitled' Panic' which was absolutely brilliant at explaining everything you have above re fight/flight etc and how child can take control of this and develop strategies to cope, would recommend it to others in similar circumstances. Back to your message above, is a paed referral on the back of the CAHMS referral, or a separate pathway? Many thanks for all your advice.

Chocaholic73 Thu 09-Sep-10 16:23:34

*Guineapiglet" - I really would say it sounds as if your DD is doing way too much, she really, really doesn't need 12 GCSEs. I will answer your abbreviation queries as I am here - yes mental health services is CAMHS (child & adolescent mental health services) - very variable imo, my experiences with DD with ME, plus DD2 who has SEN and anxiety have not been good, but as always it depends on the individuals you get to see. Paediatrician referral is totally separate, don't wait to see CAMHS first but definitely get the ball rolling now. CBT is cognitive behavioural therapy, there is lots of info on the internet out there.
Dwardle glad everything is going well for DD and your new job - don't work too hard!
It's nice a busy round here atmsmile

Cuppycakequeen Thu 09-Sep-10 16:40:27

Hi all,

Had quite good phone call with the education welfare officer today, from being all over me last term for not sending dd to school she is now totally on board and doing all she can - apparently she'd noticed that dds abscences had a classic ME pattern! Amazing what hindsight and an official diagnosis can do.

DD seems to be developing a lot more problems with stomach pains and not wanting to eat at the moment, I don't know what to do that I can tempt her with - shes gone off all her favourite things at the moment. I guess she doesnt need to eat so much because shes not moving around.

guineapiglet can you talk your daughter into taking a year off and just resting for a while? From all I've read the earlier CFS is caught and the less they do to start with the easier it is to help them build it up again afterwards. I really struggled to get my dd into school as much as poss with the result that now she can hardly leave the house.

Hope everyone is doing ok, I met a really inspiring young woman yesterday who was bedridden for five years with CFS but is now doing so well that shes going to Uni in a couple of weeks.

Take care, cuppycake xxx

Cuppycakequeen Thu 09-Sep-10 16:47:41

Forgot to say positive that dd was able to come to the support group meeting with me and it was really good. Everyone was nice and they all made us feel so welcome. One man talked alot about his symptoms and how he was feeling and I could see dd at the moment the realisation hit that she wasn't alone and here were a whole room full of people wqho knew she wasn't trying it on and understood how she felt.

I will definately be going again next month xx

katsh Fri 10-Sep-10 11:14:39

v. brief hello here. Cuppycakequeen, just wanted to say that my dd has struggled enormously with nausea and stomach pain. We see a dietitian who has been brilliant. Do try to keep her eating little and often. I didn't manage that well initially and dd lost a lot of weight which took a lot of work to get back on again. Fatigue makes the eating harder and the nausea worse, so we do main meal at lunchtime, so that by the end of the day she can just have toast or something light. I was advised to not give her her food hot when she felt nauseous as the smells made it worse, so I always let her food cool and that has helped. Also advised to think more in terms of six substantial snacks a day rather than 3 big meals, so this morning she had a small bowl of readybrek and a tiny mug of hot choc, then at 10am she had a piece of cheese on toast, and she'll have something at about 12 and then 3 and 5. I've also been told to try to keep her blood sugars as level as possible, so that has been about always giving a mix of food at one go, as it takes longer to digest eg. crackers and cheese and fruit and a drink, or biscuit and raisins and oatcake, so she never just has a single food. Also eating foods which are slow release carbs eg. pasta, noodles, pearl barley, popocorn, pulses, bread with seeds , Pitta bread, oats. Since we have been doing that things have been better for her. I'm glad your support group was good. I remember when dd realised for the first time that other people had the same illness as she has. Big relief. Have you been in touch with AYME ( association of young people with me) yet? They have a quarterly magazine for the children, and dd loves getting it.
Guineapiglet - my dd has now missed a year of school completely so far, and hasn't really attended much for nearly 17 mths. I have to say stopping school was the best decision we made for her. I feel having finally ( on Dr Crawley's advice) got her on to a very good pacing regime which does not include any school at present, that I can for the first time in 18 mths believe that she will get better. Just off to have a walk with her. Hope everyone has a good day. Hello choc, positive, dwardle and 21 smile

Cuppycakequeen Fri 10-Sep-10 19:14:15

Thank you katsh this is very helpful, its interesting that a lot of the foods you suggest are the ones she fancies anyway - plain popcorn is a favourite nibble and she will drink hot chocolate when i cant get her to eat anything else.

Hope the DCs are all doing well - catch you soon

Cuppycake xxx

dwardle Sat 11-Sep-10 10:27:15

Morning everyone
Just another thought about what it was like when dd was at her worst. She was always a voracious reader and it got to the point when she could not read ANYTHING at all - this was an even bigger shock than not eating or the fatigue. When she started to pick up, she went back to really easy books she had read years earlier before she started to read anything 'normal' I think that is another reason why school is such a challenge - it's the cognitive demands as well as the physical.
Great posts everyone - thanks for doing the acronyms, Choc,and I totally agree with you re school and gcses and also about getting paed referral, and such helpful advice from Katsh. How is dd, positive - has she been into college?
A thought about paediatrician - it really helps to have a paper trail for teenagers. You can get special help re exams, e.g. dd does them in small room because of panic attacks and was also allowed rest breaks if needed. If you have a formal diagnosis from a paed, it saves any arguments. We plan to get a letter to go with ucas forms to explain why she has 6 gcses rather than 10 + AS which she was doing, when dd applies for uni. And our paed was really nice, sympathetic and reinforced all the things we knew we should be doing, ESP giving up schoolgrin
Hope all the dcs are having a good weekend and the parents are getting some respite! So glad you had a great hol, by the way, Chocsmile

Hi all,

A bit down here sad.

I knew that college was a risk. I understood that she might not be able to do this course as it is 11 hours a week and it might be too much for her. I knew that she would be really tired. I knew she would struggle.
....... I DID NOT EXPECT her downward crash to come so dramatically or so quickly. She has only been in 3 half days. sad

She's back to struggling to walk around the house, not having the energy to eat, but still seems to have the energy to be foul tempered with everybody else!! hmm <<GGGgrrrrrrrrrr>>

dwardle Sat 11-Sep-10 15:15:21

Oh - am so sorry - poor you. It's bad for all of you. Am trying to think of anything that might help sad

A holiday in the Caribbean, ALONE, Maybe?

If, not a huge crate of pink bubbly - ALONE!!

She's not so grumpy at the moment and is scouring the job section in the papers??? hmm hmm hmm
We had said that we didnt want her looking for a job until she had started college, so, in her teenage brain, 3 days of college now means she can look for a job. She cant walk out of the house, but somehow thinks that she would be able to do a job. "Cloud cuckoo land" springs to mind!!

Anyway, hows the new job? Havent spoken for ages. Hope you are ok. Really good about DD doing so well. smile

Chocaholic73 Sat 11-Sep-10 18:27:31

Positive really feeling for you, it is so hard to see them suffer. Hope DD picks up quickly but it is going to be tricky not to fall into the "boom and bust" trap I think! I do think it's very important for them to have dreams and your DDs obviously involves having a job and just being normal. It is terribly difficult to let them make the mistakes themselves when their health is at risk and I don't have any answers just want you to know that I understand how tough it is.

My DD went to her first drama class today! First time she has done anything like that for more than 3 and a half years. I think she will quickly outgrow it, as she is older than everyone else but she finds meeting new people very difficult having been at home so long so it is a huge step. This afternoon she is tired but not ridiculously so.
Hope you're all having a good weekend.

guineapiglet Sat 11-Sep-10 18:48:00

Dear All, thank you for your welcome and words of wisdom last week, big help. My daughter has survived her first full week back at school despite EVERY morning having some kind of anxiety - or panic related fear, about getting on the bus, about the classroom, about eating in the dining room surrounded by people. She is very proud of doing a full week, but has been wiped out in the evening, not interested in 'homework' ( thankfully hasnt been much this week) and seems genuinely motivated by new subjects/teachers etc, so has had a very slobby day today and we have been cooking together etc to relax. This feels like such an achievement after the stop/start half term last year.( a bit like how you describe your boom and bust trap, positive?) SHe has been having a tonic ( Metatone and has some brilliant liquid iron supplement to have after period time.) Her eyes and skin look a bit more sparkly.... I feel really proud of her for persevering because I can feel how tense I get in the morning before she leaves to get the bus.. will she/won't she.... am treating myself to large glass of red to celebrate!!! Regards to all

Cuppycakequeen Sun 12-Sep-10 20:08:25

Very down today - I would do anything to trade places with dd today. She was so worn out that she only lasted 10 mins at our family bbq before she had to go back to bed. She was always so sociable and family oerientated before - it cost her so much to have to give up and go in. When i went to check on her she was shivering again, she seems to feel the cold so badly, she didnt want to eat or anything so I gave her hot ribena and then had to go back. That makes me feel so torn - but I also feel like I'm neglecting the other two, and my dad and his fiancee and some friends were there too.

Sorry - whiny rant over. Hi to all - positive I hope your dd is feeling better after the weekend, will she be able to go back to college do you think?

I hope this week is better - dd seems to be getting worse by the day at the moment and despite seeing ped consult at the beginning of august none of the other specialists/therapists she said she would contact have got in touch yet - I'm very glad I've got you guys,

Hugs to all, Cuppy cake

katsh Sun 12-Sep-10 20:26:56

Cuppycake so sorry to hear it's been such a tough day. That was us last summer. I have to say it's only been when we've fully committed to proper pacing that we have got anywhere, and unfortunately that does mean enormous restrictions on "normal" family life, and being fairly constantly torn between your ill child and your well children. How is your dd tonight? It sounds like she really needs to attempt very little at the moment - I hope that you can manage the next few days ok. Do you have much local support from friends or family? I know it's really hard. You are not whining - we all need somewhere to talk about the tough times too.
Positive how are you and how is your dd? I'm sorry last week was so tough.
We had a divided family day again today - I took dd1 and ds to church whilst dh stayed home with dd2, then dh went off to visit friends with dd1 and ds and I took over at home with dd2. Now I've just been out to take dd1 for a swim. At least on the weekends I get my turn to go out too. However, dd2 is still stable so all good. I have a little hope in my heart that maybe she'll be trying a bit of school after half term if we keep going in this way.
I wish all the dcs a good week.

Cuppycakequeen Sun 12-Sep-10 22:52:31

Hi all, well at least she's managed to get to sleep tonight which is something - only problem is shes fallen asleep on the sofa and is snoring away beside me :D I can't lift her so she'll have to stay there. I'm not going to risk waking her after three nights of her still being awake past 2am.

all your messages are so helpful, Katch I can see how you manage your family so well between the two of you, my big problem at the moent in those terms is that dd wants so badly to not miss out and she pushes herself too hard. Because she is older (nearly 13) I do leave ehr for short periods - so I took my yuongest to church this morning and i will pop in to town to do the shopping etc without her - its just that i feel guilty leaving her, never mind that she probably wouldnt want to come anyway!

hugs to all cuppycake xx

Cuppycakequeen Mon 13-Sep-10 15:44:28

A good nights sleep obviously paid off - she had enough energy to make cookies this afternoon although was feeling too poorly to come out to patchwork club - just the thought of being in thec ar makes her feel ill.

School nurse phoned and was really nice - she is going to chase up the CAHMs referral for me and talk to the OT about whether lucy needs any other support.

I'm feeling a bit brighter today - I've crossed off all the school possibilities i'd written on the calender - I felt like I was failing each time I missed one. I've decided neither of us need the pressure right now.

My spelling was terrible on the last post - pink fizzy cider makes me wibble! But did help me survive the BBQ!

hugs to all, Cuppycake xx

Really pleased that you are feeling more positive Cuppy and well done on crossing off the school things wink

DD phoned me from college today in tears to go and collect her sad.

I came home and spoke with consultant on the phone who has suggested a few things to discuss with the college, so phoned college and they seem really understanding. smile We have agreed a reduced timetable already and see how she goes.

I really thought we would get beyond the first week without all this. sad

Hope you are all having a better day than I am (DD3 is only one problem at the moment)

dwardle Tue 14-Sep-10 19:50:41

Had a big think, in context of we are now and stuff.
Here goes.

Three of us have dcs who have done LP and all are doing well. Dd was very tired this am but is fine - she is tired, rather than chronically fatigued - but then so am I!

She was pointing out to me that LP is a process that she still uses sometimes and is the thing that most helped her recover. Positive - she would be very happy to talk to your dd about what she did if that was any help at all. Will not be offended if you say nogrin
Wondered what 21again - and Optimistic, if you are still out there - think.hmm I know that boy who did LP with my dd is doing really well too.

Cuppy, forgot - how old is yr dd?
Guineapig - how have the last 2 days gone?
Katsh - you seem to be really organised and your dd has made so much progress from your early posts.It goes like that, doesn't it!
Choc - how is your dd? She has made great progress, hasn't she.
I want to know when I will EVER stop worrying, esp in the mornings when I stick my head in to dd's room - will she smile or be pale grey and puffy?
So far - usually smiling.

dinamum Tue 14-Sep-10 20:27:37

Hi guys popping into see how you are all getting on. Good things have happened for some - great exam results etc.

Sorry for some of you that things are moving a bit slower but you will all get there!

Positive I can't remember why but sure you have said about not doing LP. However your daughters situation is so similar to me. I was determined that everything was alright and started to do things but just could not do it. However the LP will really help her to get over this really difficult stage of wanting to do things then crashing and being unable to carry on. If she has any questions or concerns if I can help do ask.

I don't want to sound pushy or evangelical but just want all of those suffering in this awful way to feel better!

I am teaching at a sixth form and really hope you college can be accommodating for your daughter we do try at ours. Luckily we don't seem to have as many restrictions as secondary schools.

Cupycakequeen and quineapiglet hope things are going ok for you guys - nice to meet you!

Katsch really sounds like your little one is turning a corner - though must be very hard for you.

Dwardle I still wake up in the mornings with a smile - after being so poorly and just being able to get up on my own and enjoy a normal day without the fear of crashing is like Chistmas every day - so glad your DD is enjoying the same

Cuppycakequeen Tue 14-Sep-10 20:29:49

Hi all, Positive so sorry your daughter had a bad time, strangely enough most of my friends have said that all their kids are tired or going down with things, maybe there is something autumnal around in the air that is maling everyone tired. Really hope she gets better quickly.

Dwardle My dd is 12. I haven't ruled out LP but I'm actually too broke at the moment to afford it - plus I'm not in a hurry for her to do anything. In the last two years we've suffered a major bereavement ( my mum), her dad and I separated in very trasumatic circumstances, we'ved moved house, she changed school and gone through puberty!! So I sort of feel maybe this is her body saying Stop! Enough! So if she needs to just eat and sleep and nothing else for a few months then I should respect that.

She got up for a while today - my brother came to visit and she sat up for a meal with us which was lovely. I've noticed as I've cut out all the stressy stuff the headaches have become much less frequent so although she is still exhausted and has muscle and joint pains she is finding it easier to bear.

Hi to everyone else, chat soon
love cuppyccake xxx

dinamum Tue 14-Sep-10 20:39:57

Chistmas is obviously a really splendid super type of Christmas!blush

dwardle Tue 14-Sep-10 22:39:29

I think there is a reason for the joint pains, Cuppy, but I cannot remember whatconfused Can anyone else? DD had a heat cushion that you warm in the microwave - a long fluffy thing - which she found incredibly helpful and comforting
I think you are absolutely right about yr dd cutting out all the stressy stuff - and am not sure if you can do LP with children as young as 12. I also think everyone is tired at the moment.
Hi Dinamum - thanks for your comments - I got what you meant about christmas! Yes, it is like that!

guineapiglet Wed 15-Sep-10 10:17:26

Dear all, it is lovely to be included in such a strong and supportive group - am intrigued to know what LP stands for, can someone explain it to me as it sounds like it might be worth bearing in mind. It is hard to read some of the posts as you realise how tough this process is for the children and parents alike, but it is reassuring that there is understanding out there! ( Hope that makes sense!). My daughter has now entered week 3 of year 10 - it is rather daunting looking at her timetable, and helpful reading comments about schools possibly reducing timetables if the need arises as I am concerned she has been overloaded.- it has turned cold and autumnal up here and I do think once the children are back at school all the lurgs and bugs start to surface so I am concerned about her being knocked back again by a 'germ' or 'bug' or such like - as you say, do we ever stop worrying?. Sadly we have had to reduce all 'extras' after school, band, Scouts, etc etc and am concerned that her life will be very monotonous with no extra fun. She went off today in a skirt and looked so dainty, but so very thin despite eating almost non stop. In bed by 8 as well. ( shes 14) I work in a school and usually find the second half of this term hard work with the cold and darkness, so it is not encouraging to look outside at the wind and rain already. Lots of treats needed I feel!
Regards to all XXX

Cuppycakequeen Wed 15-Sep-10 10:22:08

Another messed up nights sleep. DD couldn't settle or get comfortable, she ended up moving from her bed to the sofa at about 2.30am where she did finally fall asleep. DD(7) then ended up in my bed at 5am with a sore throat.

Sometimes I'd like to just book myself into a hotel and sleep for 24 hours. I will have to try and catch up over the weekend when they go to their dads - as long as dd is up to it, she has started refusing to go, she knows now how much it takes it out of her.

Dwardle the heat pad does work sometimes - especially if the apin is in her neck or back. She also suffers from "twitchy" legs at night which is one of the things that stops her sleeping. Anyone else have experience of that?

Dinamum every day being christmas is definately something to look forward to :D I tell dd about all the success stories I find, I think it helps her to know that this is finite and there willl be an end to it eventually.

Positive How is your dd today?

Hope everyone has a good day, love cuppycake xx

Cuppycakequeen Wed 15-Sep-10 10:30:27

Hi guineapiglet We cross posted! LP is lightening process, I cant explain it very well but there are other posts about it on here.

I decided that school isn't everyting and so if dd is well enough to go out she does the extras first and only then will she do school! I'd rather she have a little bit of fun in those times that she is able to do something. It was a hard decision to make but I think it is slowly paying off :D

Maybe the college could organise her time table so she doesnt start till 10 or 11? Take the pressure off a bit in the mornings, my dd is always better in the afternoons.

As a fellow newbie it is good to talk to you, I think you are where I was this time last year - it took so long to get a diagnosis and I could just see dd falling apart in front of me and felt helpless to stop it.

Take care, cuppycake xx

katsh Wed 15-Sep-10 11:02:36

Morning -should be tidying up but wanted to psot quickly grin.
Positive I am so sorry that yesterday was hard for dd3 ( and for you). What's happened today ? Thinking of you.
Cuppycake - re sleep - my dd takes ( lots of ) melatonin, prescribed by the paediatrician. It is wonderful and gives her a much better nights sleep. Until she started it she was awake to midnight and then from about 2 or 3. This way she gets a pretty good night. Your GP may prescribe, but mine doesn't like to because of dd's age. It is really usual with CFS that sleep becomes a problem, and then it's a viscious circle.
Joint pain was a problem here too - we now see a great physio who as well as noticing that dd is very bendy, was able to explain that when muscles are fatigued ( due to CFS) it is much harder to hold joints etc in place and therefore everything is working very very hard. It was why as soon as dd went to bed she would have terrible pains and restless legs ( similar to what you call twitchy legs - she called it the stretchy feeling) . She is now working on very low level muscle strengthening exercises and we are much more aware of her posture and what positions she's in through the day and it has made a great difference. She also has supports in her shoes to help her feet and legs. Hope this helps.
Guineapiglet sounds like your dd is doing well to be managing school. It is hard to cut away all the fun from their lives. I have to say we are trying to build back the fun and then add school again. You sound like you are doing really well. I know what you mean about reading posts being hard. It's all a bit hard really isn't it? smile
DD is doing ok, but as always when we slightly increase her baseline activity ( which we did on MOnday) she is a bit more fatigued and grumpy. I think she gave her tutor a hard time this morning! I am looking forward to someone coming in for a couple of hours so that I can go and walk the dog in the sunshine smile.
Hope today is ok for everyone.

Cuppycakequeen Wed 15-Sep-10 14:16:43

Hmmmm. consultant paed just phoned, she's ju8st had a call from dd's school nurse and is concerned at how much worse dd is since she last saw her in aug and wants me to take her in for an emergency appointment tomorrow.

I guess thats good isn't it? That its not just me thinking thinks and all headed downhill at the moment?

I've been researching melatonin and lightbox therapy so I hope it will be helpful to talk to a professional.

Bye for now, cuppycake

CFSKate Wed 15-Sep-10 19:03:10

katsh - I hope you don't mind me interrupting, but when you say "dd is very bendy", is that the same as hypermobility?

katsh Wed 15-Sep-10 19:54:57

yes - I think so

dwardle Wed 15-Sep-10 22:28:25

Oh yes - totally forgot about melatonin - very helpful, esp when psychologist told dd to up dose til it worked. she didn't need to but it gave her confidence.
Yes, Cuppy - get all the help you can.
Katsh - great description of joint painsmile
Positive - how are things?

guineapiglet Thu 16-Sep-10 09:47:01

Hi all, thanks for your messages again, will try and find information about LP if I can. Do hope the Paed appointment goes well for you today and you make some progress.

Not such a good morning here, I have been in floods of tears since daughter left for school. She had an awful day yesterday, mainly due to friends ignoring her as she had a dizzy spell and had to go out. Girls are so awful at times. This morning was such hard work to get her out, and I look back at my messages and see how positive I was two weeks ago. She was so energyless and exhausted looking today and she did not want me to contact the school about it all, but we discussed 'braving' up to her friends and being strong. Looking through the messages I can see that is what we all want for our children and I so desperately want her to be well. I have made an appointment at the docs for next week with a lady doctor she trusts and will take your advice and push for a referral as it seems so early on in the term to be facing this. Our other dilemma is that husband has just accepted a job 300 miles away and so we face a move - not sure whether to go now, or at end of GCSEs, I guess it all depends on how daughter is then.
Sorry to rant, am still crying, need strong coffee and then try and work out pathway through this for her. XXX Hope everyone's day goes well XXXX

Chocaholic73 Thu 16-Sep-10 10:40:50

Guineapiglet take time for you, it is hard trying to keep everything together. A potential move 300 miles away would be daunted without DDs health issues. It is so hard for her because she just wants to be the same as her friends but health wise, she is pushing herself to the limit and the danger is she will crash totally. I know how difficult it is as I've been there too, so much focus on exams and of course they should be able to do all these extra things as well and it is so unfair that they can't.
Positive how is DD? Hopefully the reduced timetable will help.
Cuppycake how did the appointment with the paediatrician go.
Melatonin is wonderful stuff imo, DD was prescribed it when she wasn't sleeping by the paediatrician, fairly near the beginning of her being ill. She is still on it, although the GP was a bit begrudging last time we got a prescription. Joint pains are very common with ME, DD suffers quite badly, haven't really found much to help, it seems to wax and wane.
DD is doing well, DH is taking her to see Avenue Q on Monday. It will mean taking the wheelchair and driving into London but at least she can go - she loves the theatre and she has been desperate to see Avenue Q before it closes.

guineapiglet Thu 16-Sep-10 11:02:27

chocoholic thanks for supportive message - I guess I hadnt really thought of her 'crashing' but that is exactly what happened last time and I guess I didnt recognise it for what it was. Have made appointment to speak to form tutor about her and what could be done to ease her timetable, in fact a woman I know accross the road has had two daughters with ME who were both home schooled in the end. How do you get from A (where we are now) to B - (supportive/rest/out of school, not in the system) - does that make sense? Do we just keep her off school, seek medical help and then intervention from LEA/School? She seems to feel safe and secure at home and works very well with no pressure and no peer pressure - we all say it about our children, but she really is one of life's gentle, kind people - almost too sensitive for High School at times, but she had such a good year last year, academically and socially, it is hard, so hard watching it all drain away... where is my positive attitude!!!!!!xx

Chocaholic73 Thu 16-Sep-10 11:28:52

Guineapiglet it's good that you're going in to see the form tutor. If you can get the school on your side it will help tremendously. It maybe that a reduced timetable will be enough to do the trick. Get her to do less subjects, she then has the potential to do well in those. They worry hugely about homework and catching up when they miss lessons and so on and a reduced timetable will need to alleviate as many of those worries as possible. Hope the meeting goes well, when are you going in?

Chocaholic73 Thu 16-Sep-10 11:32:19

Guineapiglet I guess I didn't really answer your question about how to get from school to not going to school - it certainly happened in our case because DD never recovered from a virus during the Easter holidays 2007. She made it into school for about 3 mornings early July and I had to go and collect her from the last of those. After that she never went back.

guineapiglet Thu 16-Sep-10 12:26:12

Hi again- sitting by phone/computer waitingto speak to tutor..... when you say she never went back, how did you go about it, did you just decide enough was enough and inform the doctor/school, sorry to keep on about this, but I am unsure as to who has the say - presumably the parent, but with the back up of the doctor?? Just had text from her to say she is OK and having fun!!!!!!!! I will still keep form tutor informed as I am starting to realise that no day, or even hour is the same, just as I get myself into a kink, it all seems fine again....yet again what is 'seen' and what is 'real' 2 different things. Glad Im not a teenager, I just couldnt do it now.... XX

Hi Guineapiglet.

when DD3 was going downhill she started to be bale to get to school less and less. After weeks of us asking for a reduced timetable and the school refusing, we took along a letter from her paed saying that DD NEEDED home tuition. School then negotiated a reduced timetable, but refused the home tuition (legally I think they were on very dodgy ground, but I was too fraught to argue by this time!!) We asked for just English, Maths and Science, school insisted on loads of other "essential" lessons. Following that meeting DD attended ONE lesson, then was too unwell to return again. After 15 days off school the LA have to provide some home tuition - 5 hours a week, although DD could only access a fraction of this for the rest of her schooling.

If you get on well with the school and can communicate and feel that theya re listening and responding, then ask how you go about it all. You could ask to speak with the EWO, but mine here was used as a threat and then was absolutely useless and caused more problems. You could phone up the AYME helpline and get their advice. I have always found them brilliant and very knowledgeable about the education side.

DD is now 16, first year of college and did not attend from the beginning of November in year 10, so missed all the GCSEs. It is not the end of the world. We ahve come to realise that the qualifications will come, when the health has returned and not everyone needs to do everything at the ages that the system expects.

Sorry, probabaly not a lot of help. sad

DD3 had day off yesterday, so I expected her to bounce back a little. Today she has gone, but very wobbly legs and joint pains, pins and needles and looking like a ghost!! She ahs just phoned and has got boyfriend to collect her early. She's on her way home now. Oh no, I think this is all going to go horribly wrong again, just as I thought we were getting somewhere, and she wont discuss LP AT ALL, by the way!!!! I am now wondering how far she will have to be knocked back before she gives up!!

I echo......where has my positive attitude gone!!!!
No, my positive attitude is staying, DD has come so far and I must learn from her attitude and not give in!! She WILL get through this and live a full life again, if not as full as she was living 3 years ago.

Chocaholic73 Thu 16-Sep-10 14:40:46

Guineapiglet I think the thing is that the "she stopped going to school and didn't go back" thing is only something you can say once it has happened. She just wasn't well enough to be at school, we kept hoping she would be the following week and then when she wasn't, the next week etc etc. She tried the few half days in July and, as I said, I had to collect her. By September, she was worse, not better, with her legs beginning to give up (which they did totally by the November). The whole time uptil the September we were in the "missing education" thing ...worrying about what she was missing... After that followed a period in which DD became so ill she couldn't stand, let alone walk and there was no choice, so in a way we were catapulted into it... it certainly wasn't a conscious premeditated decision.

Chocaholic73 Thu 16-Sep-10 14:43:19

Positive so sorry DD is not so great and finding college a struggle ..life is so unfair sometimes

Cuppycakequeen Thu 16-Sep-10 16:14:01

Hugs guineapiglet I have days like that too - moving is always difficult without anything else to worry about.

Paed was really lovely,has prescribed melatonin immediately and is pushing the OT to see us more quickly - our appt at the moment is for 2nd November!

DD is tired now after having to go out this morning but seemed reassured by what the doc had to say,

Take care all, cuppycake xxx

guineapiglet Thu 16-Sep-10 16:30:13

cuppycake glad all went well for you today and you had some positivity! Lets hope appt comes quickly, November is not that far off. Thanks to all for quick responses and ideas etc,*chocoholic* thanks for all your in depth answers to my questions, if I have been tactless I am sorry, I did not realise how your decision was due to the severity of the symptoms, I guess I look at daughter NOW, but realise that each day is different, and we need to think about alternatives if her chosen path has to be redirected. You have given me a lot of food for thought, I guess I had never faced up to the fact that she may not be fit enough to continue as she is, but actually, so what if she has to miss things at school, getting her back to fitness must be the priority. You have all been brilliant, thankyou :0

Cuppycakequeen Thu 16-Sep-10 16:40:13

positive I missed your post earlier, its so hard when teenagers want to be teenagers, dd can be so bloody minded sometimes - then has a crash that lasts for day.

I really hope your dd is okay and that this is just a temporary setback,

hugs - cuppycake xx

Chocaholic73 Thu 16-Sep-10 16:49:21

Guineapiglet you were not tactless ..it's no problem at all ...we have totally moved on from that point now and things are much better even though realistically she has still got a long, long way to go.
Cuppycake glad the paed appointment went well and you have melatonin ...tough things in life can be faced much better if you (and DD) have had a good night's sleep!

Cuppycakequeen Sat 18-Sep-10 11:50:44

OK - so one good nights sleep = dd thinks she's cured, overdid it yesterday and now can't move! I thought she understood that the sleep was only part of the problem and she'd still have to be really careful but she's been getting so frustrated about all the stuff she can't do.

Now her dad is going to be stroppy with me because she can't get up and doesn't want to go and visit him for the day

One step forward and two steps back, another typical ME mum day then.

Hugs to you all, will try and post again later when I'm feeling less bleaghh - hope all the dc's have a good weekend and that their mums do too :D

love cuppycake

dwardle Sat 18-Sep-10 14:39:29

cuppycake - have you had a look at the Great Ormond Street stuff on Chronic fatigue? Is quite helpful and you may want to print it all off and thrust give it to her dad!
You are describing textbook symptoms. I don't think we got anywhere until we had to learn to accept that this was what it was like. You cannot predict how a dc will be and they can't force themselves to feel okay. I used to try to tell my dd to take a tablet, take a deep breath and get on with it.blush How wrong was I. That was a hard lesson but once I learned it, things got better. Dd's counsellor once asked my why dd would choose to be off school if she felt okay. Good point! Why would our dcs choose to feel too tired to do most ( I put most in on purpose) things if they could help it!
What I am trying to say is that we all know where you are and it is SO hard.

dwardle Sat 18-Sep-10 14:50:15

Although, having reread your post, I think your problem is dd not accepting it yet! I think positive is a real expert on this. My dd didn't seem to fight it all. She just wilted very quickly.

Guineapiglet - giving up stuff at school feels like the end of the world at first but it isn't. I am not sure if I said, but dd went from 10 gcses plus an as to 6. She got 6 passes and is now in sixth form. She hardly went to school - had great support from teachers and lots of emails plus hurray for cgp guides and got there. There is a big paper trail between us, paeds and school to support it and it will be referenced in her ucas form next year. She just did stuff when she could. At her worst, she was not even reading (is a bookoholic!) but now is always in a book or on laptop.

Cuppycakequeen Sat 18-Sep-10 15:27:38

Thank you dwardle, For the most part dd is pretty good about accepting her limitations, she always does push herself hard to please her Dad though so it's not entirely his fault that he doesnt always understand how poorly she can be.

I hadn't thought to check the GOSH website for ME so I will go and do that now,

hugs

Cuppy cake xxxx

Cuppycakequeen Sun 19-Sep-10 17:05:25

DDs are with their Dad this weekend and I have done nothing but eat and sleep! I slept through church this morning - didnt wake up till eleven O'clock. I guess I hadn't really noticed how little sleep I've been getting lately :D

Hope you're all having a good weekend

Cuppycake xxx

guineapiglet Mon 20-Sep-10 14:44:36

Dear All. Thanks for posts over the weekend, and for further support about the school issue and learning what is enough for daughter to handle etc. Hope everyone has had a good weekend! We have been busy with Son's birthday ( hes 4 years younger) but in the meantime daughter has been complaining of all the symptoms of previous 'virus' which knocked her so low last year - headaches, sore throat, high temp etc - so three weeks back at school and I am petrified we are now getting into some kind of 'pattern' - she simply has no resistance to anything. Been to see doc today, a locum, who wants to repeat blood tests, but says that virus is likely to be 'standing alone' ie what she has at present does not connect with what she had in May.... I explained about the chronic fatigue she is experiencing.. I am sure many of you will relate to this, and the frustration at having to go through everything again, over and over.
We see her own female GP on Thurs and I will push for referral now I think so that this pattern does not take hold. IF anyone has any further thoughts or ideas please let me know as am feeling rather inadequate. Will contact school again as well, so as you say there is a trail of medical notes to refer back to. Step by step eh!!? Love to all hope your weekends have been better. Horrible time of year. XXXXXXXXXXXXXXXX

Cuppycakequeen Mon 20-Sep-10 21:54:48

DD seems to be quite good today, managed to get her out to sit in the sunshine for a little bit today.

I'm feeling very depressed and weepy at the moment, its really hard for some reason. I think I'm having trouble with the sudden realisationt hat having a diagnosis does not equal having a cure.

I lost my mum last year and she was a very knowledgable and experienced nurse and I'm feeling more and more lost without her. I feel guilty for going out and leaving dd even for a short while, even though she doesnt want to come with me and is quite happy with being on her own for a bit.

I'm 40 and I still want my mum - how pathetic is that?

katsh Mon 20-Sep-10 23:47:20

Not pathetic cuppycake. I don't know how I'd have managed the last year without some key family members. It's all much harder to deal with than we expect, and some days it just about knocks you over. Big hugs. I'm glad your dd got outside for a bit in the sunshine. I hope tomorrow is a better day and you all have a good nights sleep.
positive How are things? Thinking of you. Choc how is your dd? guineapiglet I'm sorry your dd isn't so good. I hope that your GP is helpful on Thursday and you can get out of the frustrating loop of inconclusive doctors appointments. I think you are right to push for a referral to someone else. What area are you in and do you know where the specialist CFS services are? I think we've probably all been in your position and it's very tough. Feeling inadequate is also a very familiar feeling - you sound as if you are doing all you can but it is awful watching our children struggling. I hope that tomorrow is a better day for you too.

Chocaholic73 Tue 21-Sep-10 09:37:13

Hi All
*Katsh" DD is doing pretty well, she had a great time at Avenue Q last night. This morning she is tired but OK ..fingers crossed it stays that way! How is your DD doing?

*Guineapiglet" Katsh is right, you really need to push for a referral. I second doing your homework before to see the GP. Find out who is in your area - do you know if you are near any of the specialist teams? Not sure if they will insist you see a general paediatrician first (guess it is cheaper than a specialist). Hope DD is picking up a bit.

Cuppycake sorry you are feeling low, but it is totally understandable, particularly since you lost your mum last year and know she would have been supportive. I think when things are bad you always want your mum, however, old you are. I think it does make it easier if you have good family/friend support and being on your own and also having to convince your ex makes it anotherload harder. Do you have any understanding friends in RL you can offload to? I have to say, it does depend on the luck of the draw here as sometimes the one you think will be brilliant at understanding, just don't get it. Anyway, hang on and keep posting ...we are here! Don't feel guilty about popping out, you wouldn't if she was well and she doesn't mind. You need a little bit of space - it is important you look after yourself!

Chocaholic73 Tue 21-Sep-10 09:39:22

aargh! only managed to succeed in getting one bold name out of three there ...can't type this morning. Have a good day everyone!

guineapiglet Tue 21-Sep-10 13:20:54

Dear All, thanks for all the postings, what a supportive group you are! cuppycake - your message rang true, and hope you are feeling much stronger. Our Mums are so important, and their supportive, totally unconditional love is what we all need and want to pass on to our own dear ones. My mum was very touch and go at the beginning of the summer and it affected me so deeply and painfully, thankfully following major heart surgery is now making recovery...but I feel deeply for you as Mums are absolutely irreplacable. What I dont understand is why we have to deal with a hatful of 'stuff' all at once, with our children's health being the most important and most demanding of us when we are at our most vulnerable. Does it make us stronger?????
In a philosophical mood today! Thanks to everyone else too about a pathway through this. Drove daughter to school today as she had PE first lesson, had a brilliant talk to her head of house yesterday who told me she had Glandular fever whilst doing GCSEs and was very supportive and helpful. Hurrah!!
Love to you all, going out into the first sunshine for 5 days!!!!!! XXXXXXXXXX

Cuppycakequeen Tue 21-Sep-10 19:21:18

Hugs to you all, you are so understanding and supportive. Dd does seem to be sleeping a little better with the melatonin - 12.30 last couple of nights rather that the 2.30 it has been lately. If she's sleeping then I sleep so am more able to cope.

I've started handing over some of my responsibilites for outside things like running the draw for harvest festival and I don't feel quite so stretched out. Guineapiglet you are right when you say our dds health comes before everything.

Am going to borrow a wheelchair on friday so I can take her to creative stitches - we go every year and she loves it so much but I know she wont be able to walk round. However its a positive that she says she will use a chair there because she wont anywhere we are likley to meet her friends.

OT appt came through today for next monday so things are starting to move forward.

Love to all the Dds - I am very jealous of your dd choc, I love Avenue Q.

Take care all, cuppycake

dwardle Tue 21-Sep-10 22:18:50

Oh Cuppycake - how I empathised with what you wrote. My Mum is also no longer around and I miised her advice SO much - and her unconditional support and love for my dd.
You are in the right place on here though.

Totally agree with Choc ... but what is Avenue Q?

Sorry for going AWOL for a while.

I have had a bit of a health scare myself going on for a month or so. I had a lump in my neck which seemed to have the doctors jumping up and down about. At the start I was just hoping for some antibiotics to get rid and get on with life, but I had to have biopsy, MRI and lots of prodding and poking. I received results yesterday that nothing sinister, but a benign lump that is now infected, so yes, I finally got antibiotics and can think about something other than what might have been whizzing around my body!!

i have had a quick read through the posts, but please forgive me if I have missed anything.

Cuppy So much of what you type is just like my DD. Your last post about the wheelchair especially. DD refused to get into a wheelchair or even look at one for months. WHen she was unable to even stand we did get one for her, but we had strict times we were allowed out (when friends were at school) and only to certain places. She would like us to take her to a coffee shop half an hours drive away where she could sit in her wheelchair and watch the sea. It is always full of people that are at least 80 and the ratio of wheelchairs was really high. hmm She felt as if she fitted in there, which I thought was really sad!! sad
We had an incident where she was in her wheelchair in a supermarket and the lady at the checkout was trying to be really nice to her, but was actually being a tad over patronising. DD hated it and since that day refused to go into the wheelchair and even refused to have it in the house, even though it meant she was unable to go out other than us lifting her to the car and not actually getting out of the car wherever we went. Bad times!!
BUT that attitude, I am sure, has got her back on her feet and doing so well so quickly. DD was severely affected. At her worst she was totally sofa bound for months - she was got up every day out of bed as I felt that it was important for her. We fed her. She was very nearly tubefed when she choked every time she was fed. I will shut up now, I am not trying to frighten you, I want to reassure you as she has now come so far. There is another girl who lives nearby who has CFS/ME. She has been bad, but not quite as bad as DD was at her worst, but has been like it for a couple of years now. The difference I see is that she has just given up and the mum has given up and to me, I feel as if her illness has won a huge battle. She is now in Great Ormand Street having help and doing ok.
Sorry, I am rambling!!!!

I need to go now because I am meeting a friend, so will have to come back later.

Just a quick note on how DD is now. She is really happy at college and seems to be OK with the reduced timetable, so far. We did have a MASSIVE breakthrough moment when she admitted to her tutor at college that she felt she needed to do less and so be able to stick at it, rather than push herself and crash out totally. This was the first time in two and a half years that she has actually admitted she needs to slow down. I think she may have finally grasped that she is not well!!!! Wow just as we are coming out the other side of this!!!

Have a lovely day everyone and I will come back and try and be a bit more concise later.

Chocaholic73 Wed 22-Sep-10 10:26:47

Positive wow ..sounds like you have been going through the mill ..the last thing you needed! Really glad your results were good and you can hopefully start to move on from that.
A lot of what you said regarding the wheelchair rings true for me. Until we went on holiday we hadn't used the wheelchair for a very long time, but it did make all the difference and meant DD was able to get around more, but locally, she won't entertain the idea. Appalling that one shop assistant can have such an impact, people don't realise sometimes how big an effect they can have. Great news, that DD is now realising she needs to do less, if she can keep on an even keel in that way, it would be a huge confidence boost for her.
Cuppycake hope you're doing OK now.
Dwardle Avenue Q is the London stage show with all the puppets. I understand it's a bit risque ...I was told I wouldn't enjoy it!!
Hope everyone is having a good week. Lovely early autumn weather here - long may it last!

Cuppycakequeen Fri 24-Sep-10 08:08:57

Hello all. positive so sorry to hear you had a scare, you've got enough to worry about at the moment!

I'm off out today, taking all the dds to a craft show. I've got a wheelchair booked for dd and she says she happy to use it so we'll see how she gets on.

I'll be back later to let you know how we do :D

Hope you and the dcs all have good days today,

cuppycake xx

Have a good day cuppy. Dont expect too much for a few days afterwards.

guineapiglet Sun 26-Sep-10 16:34:12

Hi all, hope you have had a good weekend and all the children have relaxed and feel recharged a bit. Life here was a bit hectic last week - mainly due to up and down nature of daughter - off school on monday with sore throat, back into school, meeting with school, appt with Gp, blood tests, you are all familiar with this I am sure, I am just grateful that I only work part time!!!! Husband has begun new job away now so it is just me, and have to say patience in the morning is a little thin! Have noticed, and wondered if this is common, that daughter is very weak and hard to get going in the morning, and it was a battle every single day last week. In the afternoon she seems like a different girl, we had a morning where she had a lie in an didnt have torush around, and that extra hour made a HUGE difference to her. We also found out that (after 5 months of going to different GPS and finally finding an empathetic, concerned and motived young female GP) her GP is leaving next week, but she seemed happy to press for a referral and has recommended a therapist ( lymphatic???_ in North Manchester.... any experience of such things???? Weekend has been much better if shattered, but has managed some homework and survived her brother's 10 y birthday party. Each day different, so hope yours are doing better. XXXXXXX

katsh Sun 26-Sep-10 17:11:01

Hi, sorry for not responding to posts,but just wanted to say we've just held a coffee and cake sale this afternoon( for a very strict 1 hr) and have raised £160 for AYME !!!! DD's idea . Worth all that baking grin

Cuppycakequeen Mon 27-Sep-10 00:04:34

Well done Katsh baking is always a good thing :D

Guineapiglet what you say of your dd is true of mine. Mornings are impossible but she seems better able to cope with stuff in the afteroons.

We had a great afternoon on friday, i think she actually really enjoyed the wheelchair despite her initial misgivings, i know it meant we were able ot see the whole show. She did sleep well when we got back though:D

We've had a quiet weekend now getting ready for our meeting with the OT tomorrow, morning appt again! Maybe we ought to tell all these ME/CFS specialsists to only hold afternoon clinics :O

hugs to all, cuppycake xx

guineapiglet Mon 27-Sep-10 08:34:28

cuppy thanks for message, hope you get there OK and that your OT is able to be supportive. Your idea about afternoon clinics is a great one, but sometimes I want medics to come and see her at 7 am so they can see what the struggle is all about!!!!!! She has just left for school holding a note from me excusing her from PE for next couple of weeks, so we can try and cut down on the exertion/exhaustion pattern... PE teachers seem to be a specific type of breed tho' , I wish they could let her do as much as she feels she can, say 10 - 15 mins and then go in and gradually build up rather than playing tag rugby for an hour in the freezing cold. I know I would nt like to do it!!!!!! katsh the baking for a fund raiser is a brilliant idea and we may have a go at this ourselves. My daughter loves to cook, even for a short while and finds it restful, so thanks for the inspiration. Cold and grey here, trying to get motivated as son is now off school with a croupy cough......XXXXXXXXXXXXXXXXXXXXXXX

Cuppycakequeen Mon 27-Sep-10 09:24:16

Morning all, bad night with DD last night and now I'm trying to get her up its like trying to motivate a stone! She can barely move or open her eyes, coherent speech is still a long way off!

On top of that, because I didnt sleep till really late I overslept this morning - didn't wake up till 9!!!!!! I'm typing this while I wait for little DD to fnish her cereal! Luckily I only live a minute from the school - when I phoned in I felt such a twit!!!

OK - lets hope the rest of the day goes better than it started :D

Hugs to you all and hope the DCs have a good days,

Cuppycake xxx

Cuppycakequeen Mon 27-Sep-10 18:38:58

My Dad just came round and asked how the OT visit went. When I told him that the assement went well and that she had been measured for a wheelchair he threw a hissy fit and shouted "Dont expect me to take her out in it". Last time he came he told me off for not making her do more schoolwork. How can he expect her to do schoolwork if he wont see the need to preserve4 what little energy she has. Since i lost my mum hes all i got left and it shouldnt hurt me this much but it does. i cant stop crying.

Cuppy, <<<hugs>>> I do think that CFS/ME is so very misunderstood, but particularly by our parents generation. My dad was very insensitive and would say comments like "Skiving off school again then?" and "Havent you slept enough?"
In a way I had to make a conscious decision to become very selfish and not worry about what others thought.
It has been a very emotional day and I am not surprised that you are feeling so low. The day we got DDs wheelchair I opened a bottle of wine to drown my sorrows (it happened to be the 18th anniversary of our first DDs death too sad) and a friend text me and asked what I was celebrating!! I cried all evening!!
I am glad your DD is feeling fairly positive about the wheelchair. Yes it will definitely help with preserving the energy and being able to actually do some things that she will enjoy, without using loads of energy.

Guineapig sorry to hear your GP is leaving. I hope your next one is just as good. Not heard about the Lmphatic connection, but then I had a fit when we were referred to Dr Crawley and I read she worked at the Rheumatic diseases department, so I shouldnt worry too much!

DD is just about managing the reduced timetable, but still early days!!Boyfriend is away on holiday with his family this week, so she is not a happy bunny!! Still, no distractions to zap her of energy wink

katsh Mon 27-Sep-10 21:50:11

Hello all. Cuppy - I wish we could all just sit with you and hold your hand. It is so dreadfully isolating when you are trying to cope with the most horrible illness taking your child's energy, and even those nearest to you just don't get it. I am glad that your dd has got out in the wheelchair - I hope that it gives you some chance of a few more fun occasions together! I cried for months at the start of all this, and then I just became a bit cross, and now I've learned who to share the ups and downs with . The lovely ladies on this thread gave me some advice in the early days. I don't remember who it was who told me just to put my hands over my ears and sing through the less helpful comments from people grin. I hope that tonight is not such a bad night for you. Guineapig - hope the new GP is good. How was school today for your dd? Positive - I'm sorry you've had a health scare. I hope you are starting to feel better again. Glad dd seems to be coping with the reduced timetable.
My dd was a little more fatigued today following our cake sale, but she still managed the day pretty well. I had to go out to get dd1 (who had an inset day), some new clothes, as she only had summer stuff that fitted her and it's too too cold now! dd2 did ok at the shops and actually ended up with a few new things for herself. As she is so thin and pale I am desperate to dress her in warm looking, chunky, bright clothes, and she doesn't object !!! She has come a really long way, and although there is still a long way to go, it's good to see progress. For the first time in over a year she is having tutoring every morning for 40 mins and is managing a 10 minute piece of homework every day. Small steps but huge achievements smile. Hope you all have a restful night.

Cuppycakequeen Mon 27-Sep-10 22:15:58

thank you katsh & Positive . I know it must be hard for him but hes being so insensitive about this - and I'm being oversensitive so we're clashing!

Tried to have a calm evening but I keep breaking down. It helps to know its not just me, I keep thinking I'm cracking up! all I want is for DD to get as much out of life as possible.

DD keeps growing like a string bean at the moment, shes all pale and thin too so I understand the wanting to go with bright chunky stuff idea :D I bought her a hot pink sweatshirt last week.

Think I'm off to get a hot chocolate now - with a large dollop of brandy in it!

hugs to all, Cuppy

Cuppycakequeen Tue 28-Sep-10 13:09:53

An ok morning I think. DD was very hard to rowse and slept in for a bit but is now up and decopatching! This has been a good hobby for her because it is very effective without her having to think about what shes doing - yellow Activity :D We are started on our diary :D

im going to cook now - My future step-mum has given me a big box of windfalls so I'm going to see what I can come up with.

love Cuppycake xxx

guineapiglet Tue 28-Sep-10 13:23:15

Hi All and thanks for postings hope you are feeling a bit stronger now cuppy and the baking is helping you relax! Sorry to hear about the strife with your dad, I think men are not that good at wearing their hearts on their sleeves (understatement = isnt that we we love/hate them at the same time!) and dont deal with 'illness' like we do, we have to get on with it, and we have to acknowledge what we can deal with and what we can't. My husband couldnt deal with our sons condition ( he is anaphylactic) and even now seems to push and challenge it, whereas I accept it and work within its limitations, it is like he doesnt want to acknowldge a 'weakness' and wants it all to be allright, when underneath he is just as worried and concerned, it is just handled differently, and, usually, tactlessly!!!!! Daughter went into school today after a lie in. She WAS excused from PE, BUT, had to sit outside in the cold and watch everyone else play. WHERE is the logic in that??? I was furious! So today I took her in to miss that lesson as she has a GCSE assessment. Like all your daughters, she looked pale, and very thin, and I felt really sad seeing her not at full strength....Hope you have all had good days and keeping busy , enjoy the apples....XXXXX

Cuppycakequeen Tue 28-Sep-10 20:04:43

Had a good cry and a sort out with my dad - oyu're right i think about it being a generational thing. He still doesnt want to know about the ME but he wants to fill the tank with heating oil because dd is always cold. Typical man -- practical solutions :D

Hope all the dcs are well, cuppycake xx

Chocaholic73 Wed 29-Sep-10 17:39:43

Hi All ..I can see I'm getting left behind here, trying to catch up! Well done to you and DD Katsh with the cake sale ...will she be in "Cheers"? I'll be looking out for a smallish girl doing a cake sale and wondering if it's her!!
Cuppycake sorry you're having such a rough time of it at the moment. Keep smiling and hang on in there, you're doing a great job. You're her Mum and you know best - honest!
Positive how is college going now?
Hope everyone else is doing OK ...I don't like this autumnal weather!

Cuppycakequeen Wed 29-Sep-10 21:52:10

Hi all, Choc I dont like the weather either, I think maybe thats part of why I was feeling so cr*p at the moment. I made my first christmas cake today so that always puts me in a better mood - I love baking, its the one thing that keeps me sane :D

Take care, love cuppycake xxx

Cuppycakequeen Thu 30-Sep-10 18:15:56

Quite a good day today, shes actually started a little bit of project work on the computer and was quite bright and chatty for a bit this afternoon.

Hope you're all ok,

Hugs, Cuppycake xx

katsh Thu 30-Sep-10 23:15:57

Hi Cuppy - glad you had a better day. I am a bit nervous as I'm going back to do some study at uni, and tomorrow is my 1st day! I deferred from last year as dd was too sick then, but I'm going to give it a go now. My dh will look after her in the mornings and then a friend is going to cover the lunchtime and rest shift and then I'm paying someone for the afternoon. Just one day a week, but it feels like an enormous step to be leaving her after 18mths of full time caring. However, I think she will manage ok without me and it's a step in the right direction for her to get used to being with other people again. Still worrying though grin. Must go to bed .

Cuppy - glad you had a better day yesterday. Its lovely when the old spark is there again, isnt it, even for a short while.

KAtsh thinking of you today. I hope it goes well. I think it will probably be really good for you to have something for YOU, too. I am sure DD will be fine with other people. It could be a really positive step for both of you.

Here DD is struggling again, but has worked out that if she works hard on a Monday and Tuesday she can basically have the rest of the week off and recoup energy by doing nothing. I know she shouldnt do it like that, but at the moment I am letting her do as she wants because she is so desperate not to drop out of this year and have to start again next September. I will just keep an eye on it.

Hope everyone else is doing OK. smile

Cuppycakequeen Fri 01-Oct-10 15:24:20

Hi all,
Katch hope you day went well and that DD was ok.
Positive sorry that your dd is struggling again, but hopefully she will be able to cope.

DD was really tired again today - slept till gone lunchtime, was completely unrousable (is that a word ?) but seems ok now she is up. Her Dad is coming to take her for the night so I'm spending all weekend baking for our village market on Sunday. i'm hoping to supplement my income by making christmas cakes so I'm making lots of samples :D

Cant eat any cake myself though because Doc says I have to lose a stone before she'll find out whats causing my dodgy knees :D

Hope you're all well, love Cuppycake xxx

Chocaholic73 Fri 01-Oct-10 21:29:48

Hi All
Katsh ditto what the others have said. Hope your day has been good. Think it is important to do separate stuff (says she, who hasn't managed that particularly well!). I'm going to start a reflexology course soon, so I'm trying to rectify that!
Positive sorry DD is finding it tough. Really hope it levels out.
Cuppycake you must have iron willpower - all that cake and not eating it! Hope you do well selling your cakes and DD is OK at her Dad's.
Have a good weekend everyone.

CFSKate Sat 02-Oct-10 16:07:16

katsh - thank you for replying. I have read before that children with CFS are much more likely to have hyperflexible joints.

dwardle Mon 04-Oct-10 20:04:26

Hello
Hope you don't mind me posting this.....
dd got discharged by her paed todaygrin
It will get better for all your dcs - honestly.

Cuppycakequeen Mon 04-Oct-10 22:07:03

Dwardle that s awesome news huge hugs to you and your DD. Success stories are vital to keep us all ppositive and hopeful. xxx

katsh Tue 05-Oct-10 10:11:20

Dwardle - great news smile

Cuppycakequeen Tue 05-Oct-10 20:48:44

Well its been pretty quiet now for a few days, settled abck into a routine so dd is quite stable - although she was exhausted at the weekend after she came back from her dads. We're trying to do her activity diary at the moment, I'm not very good at reminding her though!

Had a letter from the paed today saying her last eeg had "anomalies" so she has to go in on weds next week for an Echo scan. Also she wants a more comprehensive set of bloods so poor dd is not looking forward to that trip!

We still haven't heard from the tutor about when she is due to start coming - how long does it normally take? I'm not too bothered because I think dd is benefitting from the total rest at the moment. Just dont want to get into trouble.

Hope all the dcs are well, love cuppycake xxx

dwardle Tue 05-Oct-10 21:47:57

Cuppycake - you won't get into trouble! Keep all your paperwork together and if anyone ever asks, just give them the file! Do try to keep a small note of anything that was not done in writing - date, who you spoke to, etc. Let dd enjoy the rest and remmber that Chronic Fatigue affects the brain's ability to concentrate and to work - if you are fatigued, the learning will not happen. That is why pacing is so interesting when you look at all the clours!
Guineapiglet - the school sound like they don't get Chronic Fatigue! Is there a senior person you could see to discuss? Have you got anywhere with a paed diagnosis. My dd's paed went to the school and told them what she needed!
Hi to everyone else - good to hear all your news.

Fififi Thu 07-Oct-10 20:54:46

Hello, can I join in?

My dd is 14 and was diagnosed with CFC in February. She'd had repeated bouts of tonilitis ( although the paedatrician thought with hindsight that it was more probably glandular fever)from November through to February. School were great and agreed to a reduced timetable, cutting out all the subjects she wasn't intending to pursue to GCSE. Since we live really close to school she was able to come home sometimes in the middle of theday. And she just about coped. She was insistent about doing the school exams at the end of year 9 and after a half term holiday when I more or less spent every minute with her, preparing revision notes for her, making snacks, learning with her etc she did very well ...and then CRASHED and didn't really go back to cshool for the final three weeks of term. She improved over the summer holiday and managed trips abroad and to Cornwall. She started year 10 a little more positively but it soon became apparent that it was all too much.

School cut out PE and the "extra curricular" lessons (PHSE and Life skills) but with 10 subjects there's not much slack. We saw the wonderful dr Crawley down in Bath last week. She was fantastic with Millie and saw straight away that she had really been pushing herself very hard to stay on top of her work and there was a danger of a crash again. Dd was so pleased to be taken seriously ( it is difficult for people ( and I include me here) to appreciate what it is like I think) and encourgaed by Dr Crawley's assurances that she would get better.

However to get better and to avoid the push yourself for a day or two then suffer for a day or two, and to avoid a crashing out at weekends, dr crawley wants her to stop every day at around 6 hours of "red" activity. This will mean a shortened day at school and leaving all homework to the weekend (Dr C said much better to do homework at the weekend rather than on a weekday to keep a certain level of activity at the weekends) and apparently I've got ot be vigilant in making her stop even on a good day at the 6 hours (no socialising with friends/computer /challenging TV included).

Isn't it all going to be very difficult. Have any of you gone through this and found the increase in activity does go up quite quickly. is this pacing really better than good days and bad days - I so love seeing her having fun sometimes ( albeit rarely) with her friends that I am loathe to stop the event even if it means a crash the next day. Dr Crawley was adamant that the up and down, do too much/crash back down cycle had to be broken.

I've got a meeting at school tomorrow to try to make up the new timetable without giving up any subjects. Seems to me that geography and history are easier to catch up with than maths and the sciences and languages? And I'm going to ask for weekend homework only. Any other tips?

And the real difficult one to call is what to do about the 6 day trip with the school choir to sing in venice. One performance a day, some sightseeing but free time as well...but she wouldn't be in charge of her day like on holiday, and it would be tiring...but she wants to go and had promised her best friend that she will be there...andf school have said they will make special arrangements for her....but I guess Dr Crawley would think me mad for even considering letting her go?

Any observations/knocking sense into me gratefully received...some of you have clearly had to deal/are clearly dealing with more extreme cases than Dds...it must be so hard .... then again Dr C said most children giving questionnaire results like Dd would be off school far far more...

katsh Thu 07-Oct-10 22:37:31

Hi fififi and welcome. Sorry to hear about your daughter. This is a brief(ish) post as I need to go to bed, but having had dd sick for 15 mths before we saw Dr Crawley in July I can honestly say that it is only since we followed her advice to the letter that things have improved. For the first time in 18mth I believe dd will get better. We have got rid of "bad" days and have a predictability to life. My dd could only manage 4 hrs red in July but is up to 6 now, but I'm sure speed of increase is variable, although I expect Dr C said 10% fortnightly or thereabouts. We cancelled our summer holidays on the back of Dr C's advice so I guess I'd say if you know the choir trip is really a bad idea, then it's tough, but you probably need to cancel it. We all know how hard it is to stop your child having fun when they seem to be managing, but the boom and bust of this illness is the consequence. Yes - pacing is really really difficult. I have 2 other dcs and it has drastically altered family life, but we are finally seeing our dd start to get better, so I feel it's been worth it. Anyway that's just my view. I'm sure you'll do all the right things for your dd. Hope the school meeting goes well.

Fififi Fri 08-Oct-10 15:33:12

Thank you katsh.

I've just spent about an hour reading back through this thread - I've dipped in and out since diagnosis and , indeed , it was through here that I first heard about Dr Crawley.

School tried to be very supportive, although it took a while to explain that it was not enough to waive homework so she could attend all lessons - there are only five lessons a day of an hour each so that's five hours said the Deputy Head, isn't that achievable?....I had to point out that it was a day at school isn't just 5 hours of lessons but a ten minute walk ( OK 2 minute drive) for an 8:25 start right through to 4:00 and getting home. Nigh on 8 hours. And you have to allow teenage girls time for facebook , and arguing with siblings and worrying time...so we're easily on 10 hours plus. Too much.

What we did agree was a reduced time in school going down to about 4 to 5 hours a day and NO homework to be done apart from at the weekend. Dr C a big fan of homeowrk at the weekend if only to keep every day the same in terms of activity.

So that seems hopeful. Before we were using the free periods/late starts of the reduced timetable to do catch up work/homework so it wasn't a reduced timetable at all.

Can I ask - did your Dds ( it's all daughters isn't it?) get worse and worse? Obviously some of you have had truly awful times...how did you get to the bad place? My dd hasn't been good since February but apart from post exams in summer there hasn't been any marked downturn. I guess we were lucky to avoid that crash becoming worse/permanent because she simply missed school til the end of term and then had a lengthy summer holiday.

Over the summer she seemed almost her old self - but now looking back I can see that as it was the holiday there were lazy mornings of PJs and TV and there was no dictated timetable and some days she didn't feel great but there was nothing she HAD to do or catch up with, so it was a false positive maybe.

Anyway, we will try the new timetable and I am going to bite my tongue/sit on my hands and not try to get her to do some work when she appears perkier. Fortunately big sister who wasn't overly sympathetic is now back at uni and older brother( ditto) is off on his gap year travels soon so she won't have them making her feel guilty. But I too haven't bought in to the forget exams/11 GCSEs train of thought yet so i do need to heed the very good advice from others on here.

I hope everyone else is coping. And thank you again katsch for replying - it must be so hard with a dd so young...

Chocaholic73 Fri 08-Oct-10 20:49:00

Dwardle that is fantastic news, this thread is for ups as well as down and we all need to see the positive.
Cuppycake hope DD gets on OK at the paeds next week. Don't worry about the tutor. Once they have you on record, it is not a problem. You won't get in trouble. In some areas, they are short of tutors.
Guineapiglet hope DD is doing OK
Katsh how is DD?
Fififi Hi and welcome. It sounds as if you have been lurking for a while, so you know us already! I'm glad your DD saw Dr Crawley - she is really good. I really wouldn't think a school trip is a good idea tbh, they spend hours awake nattering and that is all so much energy. It sounds as if your DD will still be doing a pretty full timetable ..dropping lifeskills type stuff and PE isn't much at all. What it is really hard for us parents to get their heads around is that vast numbers of GCSEs are really not that important. Education can be made up later if necessary. Unfortunately schools seem obsessed with students sitting huge amount of exams. (sorry ..bit of a bee in my bonnet about that one).
Re your question about how kids get severely bad with ME, I can only tell you about my DD who was in Year 10 when she first got ill. She had a virus from which she didn't pick up but at that stage she was totally mobile, just hugely fatigued, headache, legs aching etc. She tried going back to school but couldn't cope. Then it was the summer holidays and (unlike your DD - so this is positive) she didn't pick up. We went on holiday and by that stage her legs were getting very wobbly. We couldn't go very far and it was very difficult ..no wheelchair, no blue badge or anything. Come September, she still wasn't well and the legs were getting worse, she could walk less and less and they finally gave up by the November. It was having Dr Crawley come to see her at home the following June and then following pacing at very little red, that got her back on her feet and moving round the house again. Hope I haven't depressed you - I think it's good that your DD seems to have bottomed out, but I think you really need to pace quite strictly as Dr Crawley has advised, and soon she will be able to do more. Sorry this has ended up so long and keep posting!

dwardle Fri 08-Oct-10 23:38:38

Hi Fififi. Welcome and so sorry to hear about your dd. A very familiar story to us all.
Re your questions about gcses - here are my thoughts
Does your dd NEED 11 GCSEs?
Needs eng, maths, a science,......
Think about -
Section on UCAS about medical stuff,
What are entry requirements into 6th form ? - for my dd was 5 gcses and they said they would waive that if she didn't make it (she did)
I know some very top unis look at gcses but the actual entry requirements are related to AS/A2 scores.
I can tell you about my dd - until she cut from 10 +as to 6, she did not start to get better. She has managed to stay with her peer group, recover and get into 6th form where she is doing 4 as levels (proper subjects!!!) Worse, when she was still on full timetable, she got so stressed that she had major panic attacks (ending up in A&E once) So - in the end, paed said look at her as a person. We did and decided that her health was most important. We are both teachers - DH is secondary & I am Primary Head. Do I regret choice .... NO!
She went to gig last night and was up before 7 this am to advise me on wardrobe choiceshmm
The trip - how will she feel if she feels fatigued in Venice? Will her friends/staff understand - can they leave her in hotel? Is there potential for her to feel like she is a pain? I would be so wary.Asked my dd what she thought - she said don't go! The worry of the impact of feeling fatigued could really knock her back. Sorry to be so blunt - this is obviously my opinion - but there will be other trips and other opportunities.
Also, pacing has to become the choice of our dcs at some point - they need to learn to take control. But they need scaffolding into it!
It's late - will chat tomorrow.
Hello to everyone else.

Fififi Sat 09-Oct-10 19:48:27

Is X factor a red activity?!!

Fififi Sat 09-Oct-10 20:22:57

Back on to say thank you for all the advice chocaholic and dwardle.

Wasn't being flippant with the X factor question - it's seriously quite hard to decide what category a TV prog falls into (except for Friends for the umpteenth time which is clearly yellow) and if she's not allowed to nap it's difficult to come up with activties for dd which aren't red.

When did your dd become ill dwardle? very encouraging to read she's back to normal in ( presumably) year 12? And chocaholic you say your dd became ill in year 10 - where is she now?

I do hear you both about GCSEs. But dd is adamant that she is not giving up any subject ( apart from possibly statistics which they haven't even started yet). I think the problem is that she has two older siblings and thinks it is imperative to get the same number of exams as they did. Her school seems to have chosen to do modular based courses so she will get parts of the exams in lots of subjects out of the way during the two year course which is good in a way. But does mean that she's got the pressure of "actual" exams/assessments right now and every month or so.
Thanks for all your comments...now back to the X factor....we've decided it's so predictable it's a yellow!

Chocaholic73 Sun 10-Oct-10 21:31:28

erm ...I think Dr Crawley would probably say red (please don't throw rotten tomatoes at me!!!). However, as you say ..it is very predictable so balance that against any excitement, annoyance etc etc. Everything is a balance when it comes down to it and you have to weigh everything up ..unfortunately. Don't envy you with a DD being competitive with older siblings, hope she can cope. It is one of the things about ME sufferers ..they almost always have very very high expectations of themselves.
In answer to your question Fififi DD is now almost 19 ..she is do