So glad to hear your good news, Positive. Let's hope she has really turned the corner this time but as Katsch says grab the good while you can...

You sound so much better too Katsch.

Things do get better and what we have to keep remembering is that 'natural' as opposed to 'manmade' things can never stay the same they are always changing...

Enjoy the rest of the weekend...

Positive - that is great I am sitting here smiling for you. Of course it may all change, but grab hold of the good when it's there.
We're ok today. Mum home from hospital, I got out with dd1 for a few hours, dd2 coped with brief visit from noisy cousins, and overcame her anxieties and held a sparkler.
Got to get her to bed now, and we'll see what tomorrow brings.

Katsh - Sounds as if you have had a tough week. How is your mum doing?

I have come on to give you a bit of an update on DD3. I have struggled to not share this with you all, simply because in the past I have said this sort of thing and then everything goes so wrong. I feel as if admitting things is a bit of a jinx!
DD has coped really well with the trip away last week. We have had no real payback from it. This week she has been woken early every morning by the builders and has been ok with that. She has attended the education unit only once this week and had home tutor once, but has been fine with that. Because we reduced the schooling she has been able to meet up with friends once on Monday and then was supposed to meet up again on Thursday for a firework display, but she was waiting at the bus stop and saw her boyfriend knocked off his moped in front of her. SHe was obviously really upset as he was carted off in an ambulance and I feared that all the stress may cause her problems, but as soon as she found out he was going to be ok, she was fine. She has not been all grumpy and snappy, which happens when she is too tired. In fact things have been very good this week all in all. She has started reading again, which I am pleased about. SHe suffers from dyslexia and before she was ill just would not read anything. Then she began to read just before the visit from Dr Crawley, who said that she shouldn't because it used too much red energy because of her dyslexia. Now she has started again.

We were out today at a coffee shop when someone asked her how she was and she immediately said "I am WELL now" I know she has never really accepted that she was ill, even at her worst she would block it out, but she truly believes now that she is fine.

I now know I was right to put my foot down with Mrs CBT. If we had still been struggling on I don't think she would be as well as she is now.

Thanks for reading. If I am on here being a blubbing wreck tomorrow because everything has gone wrong I will KNOW this is a jinx!

Hope you are all enjoying your weekends.

Optimistic - hi, hope everyone is feeling better now.

Katsh - So sorry to hear that dreadful news. It does make you sit up and stop taking things for granted. I hope your DD has had a better day today, and also that your Mum has improved overnight. Thinking of you..

Hi to everyone else, how are things?

It's all about perspective isn't it. I've just heard from a friend of mine that her best friend's little boy has drowned. I can't begin to imagine the horror of that. It is important to keep remembering that many people have much more to contend with. DD has gone into school and didn't have to be peeled off me. Really, in the big scheme of things, life isn't bad at all.

Katsch - you really are going through it at the moment aren't you? Keep your chin up. As they say 'This too will pass'. Have as good a day as you can. I hope your Mum improves and you feel better later....

Dwardle - take heart. Your DD is so much better. The anorexic unit definitely puts everything in perspective. Teenage girls are a complex being!Even without the ME they are going to 'do' emotional issues in my opinion. You need to keep gently reminding her to use her LP techniques and give your practitioner another ring/email. She may say that your DD needs some top-up coaching....

Hi to 21again, Positive and anyone else who is lurking!

Good morning - thanks for your posts yesterday - they really helped. We managed yesterday a bit better. I spent more time just giving hugs, and less time trying to keep the household running, and I think we both felt better for that. I am waiting for her to wake up and hopefully today will be a reasonable day.
I was glad I was in slightly better mood by last night as my Mum was admitted to hospital with heart problems . She's been unwell before, but this is a new twist, so hoping she responds to some meds they were trying overnight. I got up early this morning to go swimming - I've a dodgy back, and it keeps me moving - but unfortunately dodgy back went bad as I turned to lock the door behind me, so I hobbled back inside and I'm lurking downstairs so as not to wake the rest of the family .
Dwardle - I hope that your dd feels a bit better today.
Have a good day everyone.

Katsh hope you are ok - thinking of you.

Dwardle - sorry DD is feeling bad but at least she feels well enough to visit her friend. You are right - there is always someone worse off - and being in the anorexic unit does rather put things into perspective. I hope her friend is improving.

Me again- dd came home early from school cos she felt awful but has just gone off to visit friend who is long term in a unit for anorexics so in the great scheme of things.....
Totally agree with 21 again and optimistic - you WILL get through this but it is hard.

Katsh - send big big hug.

Katsch - I think although awful for you, it was a good thing that your DD expressed all that emotion. Much better than bottling it up. I'm sure you did reassure her that she will get better because what she needs is a mummy who tells her it will all be OK in the end. Try not to worry, think of that conversation as healing....

Thinking of you...
Post later...
Have a peaceful day...

Hugs from me Katsh. I know just how hard this is and how sad you are feeling right now. It is so awful seeing our DCs so ill. You are coping tremendously well especially having two other young DCs to deal with, but as Positive says - maybe some time out with DH if you could get a babysitter. I do remember not actually wanting to leave DD for a while as I felt guilty at being able to go out when she couldn't.

As everybody else has said - she will get better. My DD is still well, it is now two years since she first had flu and got sick. That seems a long time I know but she hasn't been acutely ill since January this year, so the better times started a good while ago.

I know they are all different and will recover at different rates, but take heart. You are being a wonderful mother to her, and in some ways this will bring you closer than ever. Thinking of you today, post if you can.

Thank you lovely kind supportive ladies . The day got worse ... tonight was awful around bedtime, she felt so sick and she expressed all the fears and worries she has, and told me she'd rather die than feel as bad as she does I know she's only little and therefore doesn't mean things like that however it doesn't lessen the pain of seeing her coping with these things.
I will keep all your good suggestions and comforting words in mind. I know she will get better - as they all will.
Hope everyone has had a better day . Big grateful hugs to all of you.

Katsch - I just wanted to reiterate what everyone else has said. I feel for you at the moment. Just try to do a bit for yourself. You are a great mum but the frustration with this illness is that however you try you can't control it for your DD at the moment. Take heart from everyone on here. Believe you me we have all had terrible times. You must believe that your DD will get better because she will!

Look after yourself. A big cyber hug from me. We are all here for you so come and moan as much as you like!!

OM xx

Katsh - I am pleased the play therapist seems a hit with your DD. Don't worry, I have stood at the door eavesdropping too with Mrs CBT, and my DD is 15!!

I am so sorry that you feel overwhelmed by life. I do so know how you feel. There have been many times this year that I have wanted to give up on everything - I think everyone on this thread has expressed the same frustrations. I know it is of very little comfort now to say that it won't last forever, but it won't. How much school is your DD managing now? Don't let any other stress be added on to your situation by "well meaning professionals". I am still learning to nod and smile and then do my own thing!! Thinking of you and hope that things improve for you soon. Your DD is young so i am sure you are far more tied to the house with her, but try to make time for yourself too. I used to have friends come and sit in another room with me when I was tied to the house for a long time, just to chill, chat and feel slightly normal! How about an evening out with DH, too?
<<<Hugs to you>>>

Here we have had a surprisingly good week so far. I expected real fallout from last week, but so far it has gone OK. School has been halved and the stress is off from there, so maybe that has helped. I feel as if I am on a see-saw at times. When she increases she goes downhill, then we reduce activity and she is well again, so we increase again and so on. Round and round and round! Still amazing progress from the first half of the year though, so being positive!

Tea is ready, so must sign off. How are you all doing? Hope you everyone is keeping OK. Love to you all.

Katsch I do feel for you. Having had CFS myself it is so hard to imagine a 7 year old suffering with it. BUT the good news is that she will get better and you sound like a fab caring Mum to me so don't worry on that side of things. I do wish that there was an easy straightforward route to get rid of CFS for everyone. As I have spouted before I am a huge fan of LP.

It was so hard for me to believe that when I was bedridden, not even able to sit up to eat, and certainly not enough energy to chew that life would get back to normal but it has and it will for your family too. Hang on in there!

Morning all. PoA - hope the money is getting sorted, and glad you had a good time away. 21again, I'm glad your half term was good too. Dwardle - I'm glad that your dd got to see someone so positive. I hope that things go well for her this week.

Play therapy was odd. For the first assessment the therapist came to our house and wanted to be alone with dd for 45 minutes. It felt very strange to allow a stranger in to my little 7 yr old, so I must admit I eavesdropped a bit . dd liked her, and once the therapist comes back from her holidays mid - November dd will see her weekly at a children's centre. I hope that it will be useful to her - she has so much fear and anxiety and sadness about her cfs that she needs someone with the skills to see her through it.
I am feeling rather overwhelmed by it all. DD is still not doing so well, and I find it so sad, and frustrating, and I'm constantly questioning whether I'm caring for her well enough. I definitely need to tighten up the pacing again . I know that that helps, but it is so difficult to manage alongside my other 2.
I'm sorry to be a bit miserable and grumpy, but 7 mths in I feel pretty lost. I know that being at home all the time is making me rather isolated, but it's hard to see what the answer is.
Anyway, I shall get on with today : ) . Hope you all have a good day.

Hi all
Interesting times! Esp big hug to PAO - what a nightmare.
Update on dd - she is okay - not brilliant - but okay! Saw chap at CAMHS and he suggested that her pain may have non-physical causes - which is what I suspected as nothing else has shown up positive. He said that for her to have a 'normal' day in school probably takes twice as much effort as for most people so she was doing brilliantly really. I found this v reassuring - he was very positive with and about her. I think she is ok about what he said. She just always seems to have a minor ailment - this week is a silly cough and she says her throat is sore. BUT she is not fatigued which is the big difference. Anyway, she is off to see someone else in the team when the appt comes through. And she is in school!
Glad to hear the positive news from everyone - well except the money, obviously. That is worst nightmare situation.
Katsh - how was play therapy?

Hi Optimistic - glad you had a good week and hope you all shake off the remnants of the flu soon.

Positive - bad news about your money . A similar thing happened to my in-laws and it has left them very nervous about using credit cards etc. They now prefer to use cash as much as possible which of course has its own problems at times . Hope it all gets sorted quickly. How is DD now? Hope she hasn't suffered too much.

Hi to everyone else. Post soon..

Hi all.
Got back from Suffolk yesterday. Weather was amazing for most of the week but we all got trench foot yesterday!!!
The Optimistic household is still being struck down by the aftermath of our piggy flu. Both DS2 and I are on antibiotics now for our coughs but DD isn't too bad. She keeps getting a recurring sore throat but because we have all been so under the weather she seems relatively well!It helps that she is having a 2 week halfterm as they are moving into their brand new school building - wow! I have been so impressed with DDs resilience this term as she has been snowed under with coursework. What I find so reassuring is the way she is tackling the inevitable stress that this brings. She really does seem to take it in her stride and is demonstrating what some of you have referred to in earlier posts - an ability to apply perspective at a young age. Long may it continue....

Glad to hear that most of you have had good half terms. Katsch I am glad you have had some support and given yourself some well deserved breaks and I hope the play therapy went well. It reminded me that when I asked the LP trainer about young children that the youngest they had treated was 9 and much of the course was delivered by puppets - food for thought...
PAO about the money - my constant fear... that you had such a nice time with the 2 DDs. Hope the fallout was containable!

hi all,

Glad you had a good time away 21again*.

*Dwardle - so pleased things are good with your DD.

Katsch - Just wanted to warn you that DLA are taking ages at the moment to process applications. Ours took about 4 months, but everything is back dated, so a nice lumpsum came through which came in really useful. I hope you are successful.

Hi Choc.

We had a brilliant few days away. DD coped really well and today she has been surprisingly well. I know as soon as I type that this time tomorrow I will be moanin g about how bad she is again, but i am trying to be positive!
A little trauma while we were away when DH said that our bank account had been frozen because someone had cleaned us out of £3000! I was 350+ miles away from home with no money and no petrol! A little hairy, but I must admit the bank have been really good and after some panic phone calls they were fine. Still a bit cash less and things still being investigated, but we will get the money back before too long.

Anyway, hope you are all doing well. Keep posting.

Hi all, back from a half term trip away. DD is fine although she did have a couple of dizzy spells. I think one was because she hadn't eaten properly (this has happened before), and the other because she was very tired (but normal tired).

Dwardle - how did the session with the counsellor go?

Katsh - Sorry DD is so exhausted, did she manage the play session?

Positive - looking forward to hearing about your trip to see DD1.

Optimistic - hope you have all had a good time.

Nickschick and Choc - hope to hear from you soon.

Enjoy what's left of half term and post soon.

How is everyone?

Hi, glad you are having good half term. We are a bit up and down here. My parents came to stay and although that enabled me to leave the house a bit dd2 has been left very exhausted. So difficult to find a balance. Grandparents left yesterday and dh is now at home for the rest of the week - hurray. DD2 is having a very quiet day today, and has first play therapy session tomorrow, so hoping that she isn't too tired for that. At least with dh home it means the other 2 can get out for some physical activity - they are hoping for a big bike ride tomorrow - making the most of this lovely weather!
Social services have come back to me to say they can't offer any respite, so I'm now hoping my DLA application ( finally completed and about to be sent off when postal strike ends) bears some fruit and we can pay for respite from it. We shall see.
Enjoy the rest of the week. PAO I hope you have a good visit with your dd.

Well done, PAO! Yes - success to you and very well deserved.
Things are FINE here - dd is fine about school, but when you remove it from the equation, she is totally normal now! Hmm. How are all yr dds? Finding it interesting this week - it is 1 year since she went downhill so rapidly. Going to see her counsellor tomorrow - forst time for ages.
Hope everyone is enjoying the amazing half term weather.

I hope the silence on this thread means that you are all doing well and enjoying the half term.

Here, DD3 is terribly excited about seeing DD1 tomorrow. Actually, I think the excitement has used up all her energy and she was in bed by 8pm feeling awful! At least it will be a different bed for her to sleep in for a few nights, even if we don't manage too much else!

Dwardle - school backed down about the review date when we started asking questions about why consultant had not got an invite! Now date reset yet again and paed IS coming! Yeah, result!! - round 321 to us I do believe!

Have a good week.

Dwardle - glad you survived, and brilliant news about DD. LP can certainly be used for all sorts of different symptoms, I was reading Phil Parkers site and watching some of the videos there yesterday. I really do feel it is an important tool even though our DD didn't need it.

Positive - have a great time visiting DD1, I am sure the benefit for DD3 will outweigh any problems that the journey may give.

Optimistic - enjoy your break, and I hope the weather stays reasonable.

Hi Katsh Choc and Nickschick - hope things are getting better.

We will be away from tomorrow and back next weekend. Will be thinking of you all...

Hi all - survived the big O and glad to see half trm. dd is okay - she has been in school most of this week and finished her english coursework with As so am delighted about that. Even th she is a bit wobbly about how she feels, she is SO much better and is working now - she is using her LP techniques. Still awaiting the scan but things have calmed down.
Glad to hear from everyone hope you all have good half terms and the dreaded lurgies go away!

pinkpanettone - my DD has been seen by Dr Crawley and a few on here have done really well with LP.

Hi all, back from my first travels. Fantastic week away. Four days here, then off again with DD3 to visit DD1. I hope DD3 is up to the 6 hour car journey (plus boat for 1 hour!) She keeps telling me that she will sleep all the way. I know we will get payback afterwards, but on balance we feel she needs to get away for a few days and she really misses her big sister.

Only mananged 1 session at school this week, but half term now. She has gone back to being incredibly white all the time, but is still walking and eating fine.

Hope Ofsted went Ok Dwardle and you can now relax with a large glass of red and a week of stress free ahead!

Well, we've all made it to half term. Well done! Hope you all have a well deserved good half term week.

The lady in Bath referred to is Esther Crawley. A neighbour of ours was 'cured' by the lightening programme.

Hi Optimistic - sorry to hear you and DS are not feeling too good, but the half term break should do wonders for you both. We are going away for a dose of sunshine for a few days. DD2 definitely responds well to the sun and so hopefully it will set her up for the winter.

She has gone off this morning for the last day and has really stood the test this week. Yesterday she coped with Maths and French tests, and the day before had to stand up in front of the English class to talk. She is very tired but it is "normal" tired. DH and I have been of the opinion that if she could get through to half term unscathed, then we really are at the end of all of this. She does have a GCSE Maths module in November which will be her next big hurdle, but she is coping well with the work so it's just a case of waiting to see if she can cope with the pressure.

Hope the half term break helps everyone to feel a bit better .

Sorry Dwardle - meant to say I'm rooting for you. I know what being 'Ofstedded' is like so I'm passing you a large glass of cyber red. It's a very good year I'm told!
Roll on tomorrow night....

Hi 21again - we're all struggling through to halfterm here. DS2 and I have a return match of lurginess!! DD working her socks off to get her DT coursework done. She's had 6 days off this half term which isn't fab but in the scheme of the illness levels in this neck of the woods is pretty good!
We're going up to our usual haunt this half term hol for a bit of a blow along the beach. Should do us all the world of good.
Hope you are all keeping well and I am so pleased to see that your DD has settled so well into her new school and is staying fit. Long may it continue...

Big wave to everyone else lurking on the thread. Hope your DC are doing OK... Enjoy the hols!

Dwardle - hope today and tomorrow are ok.

Hi to everyone else - hope you can post soon.

DD still a bit iffy but in school more than out.
I have got Ofsted Thurs/Fri so am very happy

Positive - have a good week, hope DD improves and that DH is cooping ok with things at home.

Katsh - has DD contracted swine flu on top of everything else? I do hope you have managed to stay fit.

Dwardle - how is DD coping now, I hope she has well and truly beaten the stomach pains.

Optimistic - have a great half term now that you have all recovered. Do you have any plans?

Choc - how is DD? It sounds as if the perrins suits her although I do appreciate it is hard work. DD must be very determined and she has made huge progress.

Nickschick - often think of you and Sam. I do hope you start to see some improvement.

In some ways I am still holding my breath in the countdown to half term, but DD is doing so well that I am definitely feeling more confident. It is easier and easier to think of her as being well now, and getting to half term unscathed will be a huge achievement. I don't imagine for one minute that DD ever thinks she will be ill again and it is amazing how quickly they do forget. She has a hockey match this afternoon and will be finishing late (6 o clock), but that doesn't seem to worry her one bit. She still takes homeopathic remedies and I think she looks forward to chats with the homeopath. Anything like that is positive so can't be a bad thing.

Your DCs will get better one way or another , but I do know how desparate you feel while they are suffering. Take heart from our experience and from Optimistic's and Dwardle's as well, I think they come out of this stronger and more mature.

Look forward to hearing from you all..

I am just off for a few days with work, so I am not ignoring you all. Will catch up when I get back.

Hope you all have a good week. Half-term is nearly here!

Aaaarrrgh just lost my message - where do they go?

I will just have to say hi to everyone, thinking of you all, lunch needs seeing to..

Positive - well done you! I would like to ask Mrs CBT if she actually knows anything about LP or has she just read about it and made a quick judgement. I would suggest that unless she has actually attended an LP session she is talking out of her *rse . What an opinionated woman she sounds and I should know!!!!!!!

Katsh - great news regarding play therapy. Sorry DD1 is unwell. DD2 has probably got some of the underlying illness as well. I know everyone in our family was hit really hard with 'swine flu'. Hope your weekend is going well

Hi to Dwardle, 21again and everyone else...

Positive - well done on the assertivness - sorry that you had to be. I hope that the weekend is good and next week goes well. 21 -I'm glad your dd is coping well again.
We've had a less good week - dd1 off with likely swine flu, and dd2 having a much less good week. She looks awful again and was too fatigued to manage her 1 hr of school today. We had an appointment with a dietitian and she lay horizontal across my lap for all of it. I'm not sure why she's not so good - maybe I haven't been able to pace her so well this week with 3 of them at home all the time.
Anyway the play therapist contacted me today and we will start in 2 weeks time, so that is good news.
We were hoping for a 24hr escape to the country this weekend ( the in-laws) but not sure they want to get the flu , so probably home painting the kitchen . Hope everyone has a good weekend with happy children

Positive - good for you but sorry DD ended up in tears . I hope she is feeling better by now.

It is interesting that Mrs CBT is not in favour of LP, our Mr CBT was very interested in it and said it made sense - just goes to show how difficult this whole business is with all the different views around .

Hope things are ok for everyone. DD is back to normal and still coping well. She has a trip to the cinema tomorrow with friends from her old school, and only one more week to half term.

Great big well done hugs to you for being so wonderfully assertive in a very positive way!

Hi all,

Thanks for the website. It looks really interesting. Will keep a note of all this for a later date if needed.

Mrs CBT has visited this afternoon and I think she was shocked that I stood up to her for once! DD ended up in tears. We discussed the fact that we felt DD was doing too much (1 hour 10 mins) and wanted it reduced. She took some persuading, but agreed in the end. You would all have been proud of my stern "putting food down" voice! At one point she suggested 3/4 hr one day and make it up with 1.5 hrs the next! My immediate thought was of you lot, firstly what you would say to me if I let that one go, then what your responses would be to Mrs CBT if she had suggested it to you. So I strongly objected! Now agreed to 2 sessions of 1 hour a week and 1 hour home tuition. We are happy-ish! Well, as happy as DD could be at the moment.
Mrs CBT very negative about LP. So it has sort of made me think I may try and persuade DD a little to prove her wrong!!
She skirted around the diet issue. I think she realised she had upset me with wild assumptions. She just said that DD needs to avoid sugar rushes!

Yesterday DD was the worst she had been since June, which shocked us a bit. Today she has improved and we now have the weekend, so hopefull she can relax and have enough energy to actually enjoy doing something like watch a dvd with her sister or something. Not up to anything else at the moment!

I hope you all have a good weekend. Away next week with work, so I am not ignoring you all. Will catch up when I return.

Positive - the website is www.nisai.com. Parts of the website are a bit confusing because I think they sell their product to local authorities etc. - you want the bit labelled NVA. Just had a look and the website has improved since I last looked and there is info on funding (which is dead easy). The lady who's given as a contact (initials VM) is very helpful and will answer any questions you have.

CHOC - Thanks for all the info on the on-line education. I am really interested. DD is year 11, but did no year 10 and will leave compulsary education with nothing. The local college sounds promising for next year, no matter how little she is able to do, they will work around her. I suppose I am just wanting to think ahead and get as much info as possible to cover all bases in case DD cannot do the college next year. I have read bit about the on-line schooling, and it something that we will keep in the back of our mind for if it is ever needed. I do like to look into future options so that I don’t feel so trapped in the situation we are in now, if you understand me.

Katsh - It must be so hard for your DD to not want to leave you. I am pleased that you have got friends around who are giving you a little break. Also, hoping DD does not catch the bug that your other DD has. I assumed that DD3 would catch everything from the others while “low” with CFS, but it has not worked like that. The others have had illnesses, but DD has remained untouched, so hoping your DD is the same.

Dwardle - Good news about DD. Good on her! You must be so pleased.

DD has just about managed her 1 hour and 10 mins today. Not sure she should have done it really, but she was determined to, so I went along with it. Picked her up looking very pale and now sat lifelessly on sofa, with the “spaced out” look in her eyes. I am hoping the paed will phone me sometime today.

Beginning to feel as if I want to shut ourselves away from any professional and we will emerge when DD is fully well whenever that will be, without any so-called experts giving us their opinions!
Anyway, I have a good week next week, then a few days away in half term, then the builders are in to start the wetroom, so lots to look forward to over the next few weeks.
I must not allow myself to get down, I must not allow myself to get down, I must not allow myself to get down. Any ideas how many times I have to say this to make it work? I believe in positive thinking! It will work. We will get through this!!

Sorry for my ramblings!

sorry ..realised that I should have said that the online education would be open to under 16s, just not the funding. I think this would have to be paid for by the LEA which might be difficult to arrange!

Hi All .. time seems to have flown ..not sure I have managed to catch up on everything ..so hope everything is going well for you all. DD is doing pretty well, we went out for lunch on Monday and to the garden centre on Saturday. After about 10 mins at the garden centre she was "spacing out" (so much to look at, large space etc) but she recovered really quickly. We will go again in a week or so, as this is what happened when we started going out for lunch .it seems to be an acclimatisation thing.
Positive ..pacing is HARD ...no doubt about it ..we are still doing it is not so tough no DD can do more because her levels are higher and she doesn't seem to suffer so much. It is only when you do something beyond their limits that you realise how far they have to go ..no easy answers here. DD would be Year 13 if she was still at school. She stopped going during the last term of Year 10. Year 11 we had ESTMA tutors following which she sat 3 GCSEs. After that there didnt seem to be any official help because she had reached the statutory leaving age (even though she only had 3 GCSEs rather than the 10 she had been predicted!). Last year, we got the NEC Chemistry course and she passed this GCSE in summer just gone. She didnt find that way of working very easy and she had already covered most of the course at school before she was ill, so it was mostly revision. We only heard about this through the AYME forums. Can't remember how old your DD is but it is for 6th form upwards. They do GCSEs as well as AS/A2.. I can give you the contact details if you want. We are very impressed so far and she is in a class "live" with about 5 or 6 others.
I shall try to be back sooner rather than later this time!

Dwardle that is such good news about your DD. LP seems to work for a number of problems not just chronic fatigue and your DD is seeing the benefit of this. Well done to her .

Positive good luck with the paed today - I hope you can get through to speak to her. It will be interesting to hear what advice you get there.

Optimistic - hi, so glad you are all feeling better. It's a relief to hear your DD doing so well and dealing with illnes just like any other "normal" person.

Katsh - it is so awful having to leave DD like that even if she is fine when you have gone. Hopefully she will get better and better at dealing with it. I can understand a bit of what you say about the separation anxiety in that we have been comforting them and caring for them while they are ill. It is therefore quite a wrench to have to leave that comfort, especially if still feeling bad, and your DD is very young to be dealing with all of this. If you have the strength and the time it may be a good idea to chase up the other therapists. Some things do not get treated with any urgency unless a bit of pressure is applied!

Choc and Nickschick - hope you are still around. How is everything?

DD is feeling better than yesterday, although she doesn't want to eat. She had some yoghurt at breakfast and some grapes and a biscuit in the car. She says she is still not sleeping very well and I think it's possible to get quite down about things when you are tired. Looking forward to the break, it doesn't seem to be coming very quickly at the moment.

Hello all. Positive - sorry your dd is having a rough ride. Hope you get some helpful thinking from the paed and Mrs CBT. 21again, hope your dd is feeling a bit better today. Dwardle - glad dd is coping better with the stomach pain. Optimistic - glad things are improved for you.

DD1 is off school with sore throat, sore head, fever - so I'm hoping dd2 doesn't catch whatever it is. dd2 had her first attempt at going into to school for consecutive days yesterday. She went in under duress, and had to be peeled off me sobbing . It's a horrible thing to have to do. She is ok once she's in, but cfs has made her very anxious and frightenend, and she's right back experiencing separation anxiety like a pre-schooler. She is having a less good week this week generally, but I have been fortunate in having a few extra offers of help, so I have managed to leave the house a couple of times which makes a huge difference.

We're still waiting for our appointments to come through for play therapy, and my sessions with the psych. - we are feeling slightly desperate for them to start, so I hope they come soon.
Hope everyone has a reasonable day

All fine here....
Back on track after our swine flu week!!DD was in all last week and so far so good this week!! Roll on half-term when we can all have a break from this.....

Hi to everyone on the thread. You are all doing well with your DC. We can only do what we think is best in our situation at the time. But it's always good to have a plan of action as I think it keeps all us mums sane!!

Have a great week next week Pos - totally agree with 21again about getting away. Good luck with both the paed chat and Mrs CBT

Things have improved here - though I hardly dare write that. DD seemed to get the hang of using LP to control stomach pain by the end of last week and has been in school normally this week so far.You were spot on, OM but it took a few days at least to get dd to see that she could use LP for this pain (are teenagers all so stubborn?!)
Even though the path this term has not been smooth, I am SO pleased that dd did LP. I am sure it has helped with lots of things.

She has started keeping a food diary of her own volition shock horror! Of course I am quietly positive and supportive and singing inside as she realises the lack of balance on school days
Hope your dd is feeling better soon, 21again - agree there are some yukky bugs around. Thankyou for bumping, OM. How are you?
Katsh & Choc - do post and let us know how you are.

Positive sorry to hear DD is struggling so much, it will be interesting to hear what the paed has to say. It's probably not a bad thing to take DD away from the stresses she is experiencing right now, and will do her good to see her sister. She will be away from the pattern she has gotten stuck in and it may do her good.

DD has been coping brilliantly up until now but has felt ill all day today. She is not tired but feeling sick and hasn't really eaten all day. I know there are some nasty bugs around at the moment so will have to wait and see what develops - if anything. We have just booked to go away for a few days at haalf term, fingers crossed .

Hi all,

21 - How is the school going for your DD? Still good I hope.

Choc - How is the online education? Can I ask how much school your DD missed before you went on to this? What "year" would your DD be in now? Hope you are doing fine.

dwardle - How are things with you now? Hope life has settled down a bit. Hope DD is feeling better now.

Katsh - How are things going for you and DD? I hope you are getting the support you need and deserve. Are the school still being OK?

OM - Is your DD managing full time still at school? I hope so, she has come so far and has done so well.

I took DD to a meeting just before she was supposed to go to her tuition unit today. We discussed possibilities for next year, which is very difficult when I can not even get her sorted for now. A little dis-heartening to have people discussing that she will probably not be well enough by then to do what she wants to do, and that is a lot less than she was planning for a year ago!
By half way through the meeting she was looking as white as a sheet and was struggling to sit on her chair. So took her straight home and not on to the unit.

I am going to try and speak to the paed tomorrow and get her view on what is happening with DD as we are not happy with the "pacing" inflexibility.

I am going away next week and leaving DH in charge, then away with DD3 to visit DD1 for a few days the week after. We know this will wear her out, but for her emotional wellbeing we have decided to just do it, regardless of what Mrs CBT may say. - I plan to keep quiet about our plans as I don't want a lecture!

So if all goes quiet from here for a while, that's the only reason, although I will get on before I go and let you all know how CBT went with the McD discussion! Food diary is well under way and I have even got a few yoghurts down her this week!

Off to cook a healthy tea!!!

Hi everyone, just bumping up the thread. Hope things are going well. Keep in touch.

Interesting article. DH and I had wondered about this on several occasions. We knew that DD's illness started with a virus but had no idea as to how long that virus was continuing to make her ill as opposed to her being stuck in some kind of rut. Certainly we were not of the opinion that she was ill at all during the Summer, but as soon as she went back to her old school we could see her going downhill. Now that that pressure has been removed she is a different girl and, although she is still facing pressures, she is dealing with them easily. Maybe the move enabled her to change her thought patterns and that was all that was needed.

I think all of us have been feeling our way in the dark with this illness, sometimes getting it right and sometimes not. It seems the more you read the more confusing it all gets. I can see why LP works, and to a lesser extent CBT - although it takes longer. I did ask the LP practitioner whether a patient has to be ill for a certain length of time for LP to work. His response was no and that he had worked with people who had been ill for a few weeks only. Maybe in those cases the virus had cleared quickly - who knows?

Good idea about the food diary Positive and I'm sorry DD is feeling so bad. It does all seem too much for her right now and hopefully the half term break will do her good.

Dwardle I remember talking to my sister's friend who had done LP and she was then using the process to help with other health issues she was having. She got good results so it certainly is worth your DD trying this.

Have a restful weekend everyone, at least half term is just around the corner.

A long post dwardle!

lots of questions, but I will answer the ones I remember. CBT comes to home because when she started DD was unable to move off the sofa. I am not in on the consultation, then she speaks to me afterwards normally. She does seem very opinionated and very unbendable, but she is "ok". DD is not too struck on her and I just get very riled, but I think that is more me not particulary wanting others butting their noses in and being very defensive. I do think she has assumed about DDs diet. I would say that it is a very good, healthy balanced diet, and I was a nurse, so I sort of know what I am talking about! Perhaps she is looking at my "size" and assuming about the family's diet, but maybe that is me being over sensitive. A good idea about the food diary. I will do that until Friday and see what she has to say. I won't give it to her immediately, just wait and be quiet, wait for the advice, which I am pretty sure is going to be what we are doing, then ask if she should have something like "this" and hand her the diary!!!

Another bad day today. I am sure that the time at school is too long for her, or perhaps too many times a week. She's just struggled to eat a tea and ended up choking, which she had not been doing for a few months.

I hope your DD gets her pains sorted out. It must be worrying for you all and very frustrating after you have come so far.

hi to everyone else, Have a good weekend.

Hmmm - as usual, you are all making lots of sense! Posatt - was rather horrified at Mrs CBT but just a thought - was she just making false assumptions and trying to be helpful? I am sure a healthy diet helps and am ABSOLUTELY sure your dd -gets one - you are right about the odd McD not being a sin - but does she know that your dd gets a healthy diet? I know lots of children who have anything but a healthy diet (I see in their lunchboxes) and have a ds who is one of them -no fruit and veg!
What it sounds like is that Mrs CBT is totally lacking in some social skills. I am NOT defending her, by the way! Is interesting that she comes to yr house. My dd goes to them for her CBT and I rarely go - it is very much between her and her person there. This was hard for me at first but as I am realising daily, being the parent of a teenager means relinquishing control. I think with me, this is very hard but also very necessary - we cannot control this illness.
Does she have to see dd at yr house? Is she private or provided via CAMHS or Dr? Does dd like her? Could you do dd's food diary for a week and chuck it at her? Is there an alternative??????????? FRom your posts, she does sound very opinionated! It would be very interesting to find out what else she had learned at her conference!
From your post today, it does really sound like your dd is still having virus-like symptoms. She sounds like we were at the beginning of the year. When dd did LP she was more stuck and lethargic than anything else. I SO agree with Katsh re the definition of success - that is ours too.You know your daughter and you know what she can cope with. Don't aplogise for ranting - if we can't rant here, where can we rant?

DD is still suffering and has only been into school once this week. Diagnosis still missing and more and more things being excluded so I have finally persuaded her to redouble her efforts using LP and see if she can use her brain to overcome the pain. She read an article this am which said that children can use their imagination to overcome stomach pain and this seems to have inspired her. I am not at all sure whether this is a stress/cfs/school pain or a real one caused by heaven knows what! GPs have been very supportive and next step is a scan (ultrasound) However, I do think that because it has been going on for a while without getting worse or going, I think she is 'doing' stomach pain, to use the LP language! She found this hard to accept at first but I think she is going to try!
Not sure all this makes much sense as I keep scrolling between posts and typing!
What I think more than anything is as Dinamum said - take no notice of stuff that is not useful and is opinion not fact.

Hope you are all having a great weekend and relaxing if possible! Don't think my trainer approves of wine drinking but there is a limit to how much self control I can exert and what i NEED on a Friday night! Husband survived Ofsted too!

Good for you Positive. No I don't think you are clutching at straws at all. It's only my belief though. I just found that around Feb last year DD didn't seem to look so awful but was still refusing to go to school and body checking a lot. She needed emotional (I refuse to call it mental) help with ,as I say, the fallout from being ill. I have thought a lot about this and think that the emotional impact applies to lots of long-term illnesses.e.g. cancer, lupus etc etc

Please don't shoot me down anybody. These are my opinions and you don't have to agree with them!!!!!!!

OM - Forgot to say that DD WAS tested for coeliac and it was all negative. Also a bit of a "lightbulb" moment reading your post this morning. DD is still getting the body temperature issues, headaches, shakes and general "ill" feeling. Is this perhaps because she has not reached that stage yet? She has improved massively and perhaps we are nearly there, then the second bit of the recovery can take place. Maybe I am clutching at straws, or maybe I am just rambling on and on! I will google this research bit some more and perhaps use it to show I have more of an idea on Friday's appointment.

Have decided to ask for evidence of any new theories Mrs CBT is going to give me. I will then read up and make an informed decision, rather than feeling beaten into something that she wants to impose.
I will be ready for this!!!!!

Have a good weekend, everyone.

Stuffit - that's so interesting. I have no doubt that my DD suffered from an unknown virus for well over 18 mths of her M.E. I personally think that eventually the virus leaves you but you have emotional fallout. ie my DD was recovered from the virus but it had left her unable to be confident in her own abilities to lead a normal life. For us that's when LP came along. It gave her the psychological tools to help her make the steps back to a normal life. I knew the virus had passed because she had no more body temp issues/headache/ tiredness just an inability to 'get back'. That is why I think that it takes a significant amount of time for sufferers to go down the LP path. It is also my explanation as to why LP works.

Hope this helps somebody....

That's really interesting Stuffit. Thank you.

Katsh Sorry, I keep spelling your name wrong!

Thanks stuffitllllamma. A friend gave me the independent this morning, as it had made the front page. I meant to mention it earlier. I know it's early stages but exciting. Thank you for thinking of us

excuse me interrupting. I wonder if you have seen this

Thank you for your kind comments. Feeling a lot more rational and controlled again.
Told DH what Mrs CBT said and he was furious. He is dead against any meddling in our private lives anyway and thinks we should just tell her to get lost! I think the appointment on Friday will be her last chance.

Katch - Your comment - "What I don't tell them is that my definition of success is that she has a bit of energy to play, to be happy, and not to be a volatile thundercloud in our midst" - That is so true. Every ounce of DDs energy is used in either getting ready for school or being there. She does nothing else. That is no life for a 15 year old. And I am fed up of the whole family having to step around her as if on eggshells because she is too tired to communicate in a civil way. I think I am going to have to stand my ground on Friday and be strong. I am not very good at that really as I tend to think of everything I should have said after I have agreed to the opposite!

dwardle - Hope things have calmed down with your family. Have a relaxing weekend.

Thanks again everyone, you are all brilliant!

Oh you poor thing. I think people get better despite conventional medical treatment not because of it!! What is that CBT lady on about!?!?!

You know your children better than anyone else. If ME was caused by eating McDonalds the whole of teenage society would be wiped out.

Sorry going to mention LP again but one thing they teach you is how beliefs are just that. So Mrs CBT's opinion is just her belief. If the belief or opinion does not help you enhance your life take no notice of it at all. A philosophy I would adopt here. Do take you things will get better

Completely agree with Optimistic and Katsh - the odd Mcdonalds will do no harm, indeed if your DD sees it as a treat, then it can only be a good thing as it will be something she looks forward to.

As far as pacing goes, I do think it should only be increased if DD is happy she can cope, and it doesn't sound too much like it at the moment. The website AYME gives some good advice on this if you haven't already seen it.

I hope you are feeling less fragile now. When is the therapist coming to visit? At least it is the weekend now and DD can relax a bit which should help. I hope you get some time to relax also. Isn't it weekends when you are allowed a drink?

Hi to everyone have a good weekend and keep posting..

Positive - of course it won't hurt DD3 to have the odd McD! how bizarre of Mrs CBT to think that cutting it out would help! Do you think she was thinking about the coeliac link? Has DD been tested for this, sorry I can't remember.
You have to do what you think is right for your DD3. this illness is very confusing and it does make you question your parenting without some old trout suggesting you can't parent properly.!! As far as lying on sofa goes. ALL kids including my DD come home and veg out for an hour before doing anything else!!

Come on, Positive, keep cheerful and get that sink shiny. It will make you feel better - honest Don't fret about what others say, stick to your guns and what you feel is right. It might be worth having a 'full and frank' discussion with DD3 to see where she is with her thinking...

BTW - she will get better, you know that don't you?

Positive - you don't need to hide under a rock or be worried about rotten tomatoes It sounds as though Mrs CBT is totally misreading the situation. The problem is ( as I in my limited experience see it) that professionals go to conferences, read books, meet a number of children with CFS, but they never have to take one home with them and try it on 24/7 . I suspect if she did then she wouldn't feel that cutting out the odd McD's would fix it all.
Your dd sounds as though the unit is really taking it out of her, and she's just not ready for the increase yet. I've had to be a bit firm with our school and say we are only increasing after dd has managed 2 weeks at the same level successfully. What I don't tell them is that my definition of success is that she has a bit of energy to play, to be happy, and not to be a volatile thundercloud in our midst - and as with your dd, that she also has had enough energy to want to eat her meals.
It's all so complicated, but you sound as if you are doing great. Just let the diet comments wash over you and don't take them to heart. I can't remember which of you suggested that I stick my fingers in my ears and sing loudly when people gave me unhelpful suggestions, but maybe it would work in this situations .
hope the day gets better.

Come here for a mild rant.

Just had conversation with Mrs CBT!

She has been to a conference on CFS/ME last week and wants to come and discuss things with me. - Fair enough, I am all up for as much information as possible.
She then went on to say that she noticed that DD had been having McDonald's meals when she has been round and thought she would come and talk about DDs diet with me. Apparently, the last time she visited home DD had one for lunch before her appointment. I remember the day well. Mrs CBT had phoned me at work and said that she would come 30 mins earlier than planned, leaving me no time to get home and do a lunch before the appointment and DD was going out afterwards and would only be having a light tea. So, due to the rush I grabbed a MCd on way home as a treat. Is that so bad!!???? I can count on one hand the number she has had over the past year. But she does consider it a treat when she does. DD, and the whole family, always have a homecooked meal each night and actually DD3 is a veg lover anyway. Not keen on fruit though.
Went on to say that if I was adamant that DD would not cope with increased time next week, then we would delay the increase and stick with the 1 hour 10 mins. I had written to her this week and said no way could it increase as she was not coping with what she had now! She said if we sort out diet the increase would not be a problem !!! She also said DD needs to get used to the time, so must not reduce it.
I just feel as if she has just really misread the whole situation and certainly not understood DDs attitude and how much she is struggling at the moment. Still not sure where the line between pacing and graded exercise is, and have we gone over that line?

DD was really bad yesterday and was unable to eat her tea (no, not McD,- Chicken breast + veg!) because she was too tired! She comes home from school and sits on the sofa for at least an hour before she has the energy to be able to think straight! Is that how it should be???

Ok, so maybe I am being irrationally tetchy about this, But I really feel as if she is questioning my parenting.

<<<time of the month emotional wreck emoticon>>

Thanks for reading, if anyone has actually made it to the end of this rant!
Please be gentle with me, feeling very fragile now!! No rotten tomatoes please. I will now find a big rock to climb under!

21 again- Please keep posting and don't feel guilty! I love to hear that someone is coming out the other side of this. We need that to keep positive. it is lovely to hear and I cant wait for the day I can post good things again.

Hi to you all.

Dwardle - so pleased your DD was well enough to go to school. Tell your DH well done, he can relax a bit now, and I hope you are feeling less stressed. Have been to the gym today, it is amazing how much better it has made me feel - I was very lethargic beforehand. I'm sure you are feeling the benefits of your keep fit regime and it does inspire you to keep going doesn't it?

Positive - we found that reducing the pressure on DD made such a difference to her so hopefully your DD will relax a bit knowing she does not have to increase next week. Possibly, acceptance is part of this and will help her to start to improve.

DD is doing so well right now but I feel a bit guilty posting about it. I know some of you are having such a bad time at the moment but remember we have been there and know how desparate it all feels.

Katsh, Nickschick and Choc hope everything is improving.

Optimistic hi, hope you have all beaten the swine flu bug .

dd went to school today
dh coped okay!

Good news about your dd, positive attitude - it is really because she is accepting Does the unit timetable have to be so structured? could she go in if she feels up to it - put decision into her hands so she is in control? We found that really reduced coinflict and led to a calmer life. DD DID opt to go in quite often!
So pleased unit head is lovely - great to prove there are some nice educationalists out there!

Hi all,

Dwardle - thinking of you. How did the lesson go for DH? How is DD today and how long do you have to wait for the scan?

We had a breakthrough here today, or maybe a bit of a breakdown! DD has been getting more and more exhausted by the end of her hour and ten minutes each time I collect her. On the way home today she broke down in tears and admitted that she is finding it all too much. She is supposed to be increasing again next week, but knows she really cant. At least she has finally admitted it! So came straight home and emailed CBT lady and head of the unit to let them know that we do not want it increased next week and perhaps it all needs re-assessing as to where we go from here. I am so pleased that DD felt able to say this and we did not have to force her into doing anything that she objected to. Head of unit emailed straight back and was lovely (I still find this attitude really alien - she is human, approachable and listens! WOW!!!)I will expect an answer from Mrs CBT tomorrow.

I hope everybody else is still doing ok.

Hi all..
Sorry you're having a *p week Dwardle.
Since when were hugs not the done thing??
(((((hugs))))) to your family. 'It too will pass' as they say.
Katsh - agree with everyone else. Take up all offers of help. You never know...

Love to Positive and 21again...

Dwardle, you have shattered all my visions of you with your trainer!

Thank you thank you for your hugs and words of support. DD managed half a day at school today. Am about to go over DH's observed lesson with him! It is tomorrow.
Sadly my trainer is female and very thin/fit - but great and I have lost loads of weight but without feeling hungry and still drinking at weekends
Thanks again - back soon!

Dwardle so sorry DD has been ill but glad like you that it is not chronic fatigue. When will she have the ultrasound? I remember having pain in a similar place and was eventually diagnosed with an ovarian cyst which simply dispersed on its own. I do hope things pick up soon. You have such a lot on your plate right now and I can understand the feeling of being overwhelmed. Take a deep breath and try not to worry. (((((Hugs)))) to you,you sound as if you need them right now.

Katsh - I agree you should take up therapists offer, it does help to offload onto someone else. Good luck with the blue badge appeal.

Dwardle, So sorry that this is all happening to you and your family now. I really hope the scan shows a cause that can be sorted for you DDs pains.
Don''t forget yourself in all the stress around you. ENjoy a glass of wine, or some time with your trainer - is he young and dark and mysterious???
Keep your chin up and this will pass. Is Ofsted this week? Hope DH is ok.
I know it is not the done thing on here, but <<hugs>> to you and "speak" soon.

Dwardle - sorry that you are feeling overwhelmed I do hope that you get an answer to dd's pain soon - does that mean that she is at home? It's good that Ds is a bit happier - I hope that Ofsted goes well for your dh, and that you find the space to get your work done.

Sorry have not been posting
DD has now seen GP 3 times, been to A&E and still has pain! Tonight she was referred for ultrasound. Still not sure what it is - is in place for appendix but she does not have all other symptoms and is not getting worse. Am SO fed upHowever, she is NOT chronically fatigued!
dh has Ofsted this week too. Ds has calmed down/cheered up so that's good. I have too much work to do.
Posatt - I really sympathise and am not sure what best steps are - have you tried asking cbt lady? Do I dare ask
Katsh - play therapy is very good usually. Do take up offer from psych - won't hurt and may help.
Sorry not to be very supportive or communicative - just feel overwhelmed.

Meeting went well. We were all seen together, so felt a bit difficult talking about dd's behaviour etc in front of her, but they've suggested that she see a play therapist weekly ( I guess that's CBT for little kids ) and the psychiatrist who assessed us today has also offered me a session with her, or more if I need them, as she correctly assessed that I needed some talking space. I am exhausted tonight ( doesn't help that 2yr old ds is turbo charged) - these things always take it out of me. Anyway I feel very positive that we are going to get some ongoing support.
Yes 21, I think I should enlist some help to appeal the blue badge. I am seeing the nurse specialist this week, so she might be able to provide a supporting letter or something.
I do hate that our kids have this illness, and I hate that we need the support of nurses, psychologists, psychiatrists etc, but I am so glad that they are all there.

Positive - it is hard to deal with the situation but remember DD is still so much better than she was. I think you are probably right that if she had to give up school it would be a huge blow to her confidence, what does the CBT lady think?

Katsh how did the meeting go? Hopefully they will have given you some helpful advice. Your DD coped well last week, but can you appeal against the blue badge ruling? It makes such a difference if you can reduce the walking especially as you have other young children to cope with and you can't leave DD at home if you go anywhere. Maybe your GP can help with that?

How is everyone else? DD had a good weekend, going out with her oldest friend - someone she doesn't go to school with. They caught the bus into town, went to the cinema and after a bit of a walk around town caught another bus back. It did her good and I think helps to be with someone different, but someone who has been a constant throughout most of her life. They don't see each other too often but I think it is good to have friends outside school and talk about different things. They are lucky that communication is so easy for them nowadays, facebook etc!

Hope all is well for everyone, keep posting..

Hi positive - hello everyone else. Glad your DD has managed school, but sorry about the fall out. It's not pretty is it? I know that walking on egg shells feeling so well. I hope that you get some clarity in your thinking on school. I have a school meeting on Wed this week, and although sometimes I want to ditch it, dd really likes it. Sounds rather like your dd too.
We are off to an assessment appointment with the local CAHMS service at 2pm. I'm hoping that is going to give us some of the tools we need to manage the whole psychology of this illness. I've no idea what to expect, and I'm a bit nervous.
DD had a better week last week and managed her 3 hrs of school, plus an extra trip in for class photo. She also managed ds's 2nd birthday - we had arranged to go to the local park, rather than have people here, and she came and played, and the afternoon and next day weren't as awful as I thought they'd be. We may be seeing a slight increase in energy levels - but I don't want to set myself up for a fall by being too hopeful! You all know what it's like.
We got turned down for a blue badge - dd can walk,almost all of the time, but we are trying to cut out all unnecessary walking as it does tire her. That didn't seem to fit the criteria. Have any of you applied and failed, or appealed?

Anyway like positive said, I hope that the quiet is due to rl going well. Look forward to updates soon.

Hi all,

I hope you are all "doing life" and doing it well with DCs and that is why it has gone a little slow on this thread.

dwardle - how is your DD now? Hope she is better and doing well at school.

Choc - Hows it going with the online education?

OM - Are things still good with your DD. Did she get Swine flu? How did she cope if she did?

21 - Thanks for your post. Hard isn't it. It sounds as if your DD is doing well at her new school. Good on you! (and her!!)

Katsch - How are things with your DD at school?

Nickschick - How about DS?

Here, DD has managed each day last week, increasing to 1 hour 10 mins, but we have had huge fall out in the evenings, which is becoming a bit much for the rest of the family to have to put up with! Things have been all a bit fraught and I am basically fed up of walking on egg shells!! Last night she did actually agree that she was horrible when she was too tired and trying to keep going. I am still considering knocking the whole school thing on the head, but DD absolutely loves it and I feel it will destroy her confidence if she has to stop. Maybe I'm clinging on to the fact that just maybe she will get used to it and will be able to cope better. I suppose as things go on her health will go one way or another, but I don't know how long to give it. Thinking we will have a long think at half term, if we get that far.

Have a good week.

Positive - so sorry, how are things now? That is exactly how I have felt in the past. You just start to feel you are getting somewhere and it all falls flat again. It is so wearing.

I wish I could delete my last message. Thanks for the kind words though!
As soon as I formulate the thought that things are going ok, they all explode in my face! terrible afternoon and evening. One very angry, frustrated teenager does not make for a peaceful house!

Well done Positive's DD, that is such good news. You see what she is capable of, she has shown such determination and she will beat this .

DD is really well. She has coped with a full timetable and this week played in a hockey match on Tuesday afternoon, meaning she didn't get home until 6.45pm. She has said she is tired this week and her eyes feel heavy but I can hear her laughing and joking with her sister, and the more of that she does the more her brain gets used to the positive patterns. DH spoke to her maths teacher today who told him that she has come second in a maths test and they want her to sit a gcse maths module in November. DD isn't keen but we will discuss it with her at the weekend when she will have had her test results and should be feeling more confident.

Please take heart from this, they do get better although I am very aware that relapses can and do still happen at this stage. I do appreciate that we have been lucky to be able to change schools and that DD has settled in so well.

I hope everyone else is well and coping with the nasty bugs around.

So glad you are feeling so upbeat, Positive. Well done to your DD

To put some perspective on all this.. my DD who is now recovered from CFS/ME has had 5 days off already this term. There is a lot going around atm.

Hope everyone else is doing OK on the thread.

hi all,
Glad you are feeling better OM and dwardle, I hope DD is feeling better. 21 - hope your DD is still coping well at school.
Hi to choc, Kasch and Nickschic and anyone else I have forgotten.

Well, I thought I would come on and tell you all how we are doing. I am quick to get on here when I am in dire need of a shoulder to cry on or a kick up the bum, so here is some good news today, instead.
DD has managed 2 days in a row without having a meltdown. Only on Monday i was wondering whether we should stop everything and go back to the start again with the pacing, or just shut the door and ignore life for the next 8 months. Tuesday, she woke up fine. She has coped with her time at school without having huge grumps and is even quite lively - well, lets not get carried away here, she can be bothered to go upstairs and get ready or school without stopping to summon up the energy! How do you all cope with this rollercoaster? I know that this will probably not last, but am enjoying it while it is here. CBT lady is going to phone later to see how she is doing and I will have to eat humble pie and admit that she could have been right yet again!

Long may it last. Have a good day, everyone.

Feeling much better today, Dwardle although DD is full of cough/cold/splitting headache but no temp so no swine flu....
Sorry to hear about your DD. Have you asked her 'does it feel like before when you had CFS or not?' If she's nothing like she was before then be heartened!!
My DH is proving invaluable at telling me our DD is ill/well! I have totally lost my judgement when it comes to her health!!
Presumably Doc has done to usual stuff - periods/gynae/appendix etc etc. What about intolerances?
Hope all is well with you at school. Ours has been decimated staff-wise this week..

DD still has stomach pains one week on. Dr a bit perplexed and symapathetic!
She is not at all like she was when she had cfs though which keeps me going.
How are you all and your dcs?
How is the swine flu?

Oh Optimistic - so sorry you've all got swine flu . I hope DH is looking after you and am very impressed with the shepherd's pie. I know how you feel about the tamiflu, I think I would be reluctant to take it but not really sure why!! Hope DD is ok and if she does get flu at least you know she can deal with any after effects.

Dwardle sorry you have had problems with DS and I hope they resolve themselves soon. Just as one problem disappears another rears its ugly head!! But.... have a great time away in Sussex, and am very envious of the personal trainer. Are you noticing a difference in how you look and feel yet or is it too early to tell? I have a vision of you water bottle in hand and looking very toned.

Positive - it is so disappointing when DCs relapse just as we are getting our hopes up that this may all be behind them. I re-read this thread the other day and it struck me that one common feature for all the DCs was the pressure getting to them when they return to school. I know your DD is in a special unit but she probably feels the presssure nonetheless. We noticed a considerable difference in our DD when we told her school was out until she felt better. She was then able to muster some strength before resuming pacing. It was as if a weight was lifted and she could concentrate on recovery. I know everyone is different but it doesn't hurt to know these things. It has been the same for our DD with the change of schools now, she is still well and doesn't seem to be considering the possibility of being ill again.

Katsh, Nickschick and Choc hi and hope things are going well.

DS1 I should add did make us a shepherd's pie from scratch yesterday so he's not that precious really.. Unfortunately when he asked for our opinion 3 of us were unable to taste it!!!!!
Am phoning doc regarding tamiflu. My inclination is not to take it, but you are prescribed it as a matter of course as a one off so you have to cash it in really....
DD was sick in night but no temperature yet...
Hope all DC are having a relatively good day [weak smile emoticon]

Poor you OM - are you going to take Tamiflu?
Try not to worry about dd - doing swineflu now means she gets it over and done with before it gets cold and dark and she can get back into the swing of things. It is not long to half term which might be a welcome break. I sometimes feel summer is too long and the autumn term is a very nasty shock to the system. A short break is somehow more constructive. Love yr ds1!
Get well soon

Great to hear you sounding more like yourself, Positive!

Guess what? I have been officially diagnosed with Swine Flu by the man at the helpline. Still feel absolutely awful and have got my code for tamiflu . Unfortunately DS2 has it and DD is still looking awful too and I think is about 2 days behind! Her attendance is going to be down again . Why does it feel like a competition to get her atttendance up? I find myself with calculator in hand working it out

Trying to persuade DH to sleep elsewhere but he insists he is made of stern stuff! DS1 has resorted to getting us all to pass him things with a pair of kitchen tongs and has used up a whole load of gel!

Oh Positive
How many times have we all been there?
Great advice from OM and 21again - they are such wonderful support
OM - spoke to LP practitioner on Fri - really helped so THANK YOU!
Positive -It is really hard and of course your dd will take it out on you who else?!!! When she is calm, you could try the emotional intelligence stuff - put yourself in their shoes - bit, but I am sure she is feeling bad about it all anyway. I know you are scared of a crash again but maybe it would help acceptance - maybe that is what is already happening? Esp if she has asked for help tonight?
Had tricky weekend here with ds - too long to go into now - but why when things are just getting better with dd - slowly- does ds go off on one
dh and I have to go and see his dad in sussex at half term so I have persuaded him that instead of night in travelodge, we are doing night in gorgeous hotel! Leaving children with my lovely brother, father of new baby. Realised just how much stress we have been under when dh agreed toplan with NO objections
point I am long windedly trying to make is that maybe, Positive, you may need to actively have a plan for you time - even rarely and snatched. I have (confession time) signed up with personal trainer - is WONDERFUL!!!!! someone looking after me instead of me as carer.

Thanks for the positive encouragement!
I am feeling more relaxed now. DD has calmed down, too. I do agree with what you are saying, and she asked for her food to be cut up at tea time tonight, which is the first time for a few months. She just couldn't cope with the cutting and feeding. She must be feeling really bad again. A few weeks ago I wrote about how I felt going back downhill again and I am sure it is 100% more frustrating for her as each step of the way is something she thought was behind her!
I am sort of steering clear of the LP talk at the moment just because she gets so wound up by it whenever I have broached the subject up til now. I WILL pick my time soon and test the water again. IF she gets to the point of wanting to ask questions with your DDs I will be in touch, thanks for the offers.

Hope all your weekends have been good.

Positive - she is feeling so bad and fed up that her normal reaction is to be grumpy and horrid. You are all living under the most dreadful stress (I know, I've been there) and arguments are a natural consequence of this.

I agree that LP is very definitely an option to consider. I know we didn't do it but DD's relapses were considerably short lived and she was never as bad as your DD. DH and I have agreed that if she had been worse we would have had to go down that road. I think we have been lucky and she is coming through this on her own - which many people do - but your DD does not seem so fortunate right now. Optimistic and Dwardle are the people to talk to about that, but we are all here for you and understand what you are going through.

Rant as much as you like, this is a good place to do it, and try to take a little time to spend by yourself. Perhaps a bath where you can just relax and shut the rest of the world away even for a short time.

Thinking of you...

Oh, Positive - don't beat yourself up. You are being extremely patient and she is extremely fed up and taking it out of the person she loves the most because it's safe to do so!
Is there no way she will agree to LP? Has she reached the point where she's desperate to be well? Sorry, I know we all have choices but I feel so much that if she gave it a chance you could end all this....
You know that she could email mine or dwardle's DD to discuss it. Not sure what is stopping her....

Hope you're feeling better after your 'rant'.
That's what we're here for!

Hi there everyone. I have come on to have a rant!
I have decided that DD3 can be horrible!! Please dont call social services!
I am fed up of doing everything I possibly can for her and she just shouts and takes everything out on me, or causes arguements with siblings and I end up getting all stressed out.
She had been getting really down about not being able to do anything, so last evening she was allowed to a friends house to watch a dvd. Negotiated the timings etc. Anyway, she came home an hour before the agreed time, due to feeling bad, then straight to bed. Today she is foul! I have not had a nice word from her all day.
The rational mum part of me knows this reaction is because she is too tired to cope with life. She is fed up with all the restrictions CFS/ME has caused and she is struggling far more than she wants to admit to herself, or anyone else.

Once again I have had enough!
Just read back through the most recent posts and I am pleased that you ended up shouting at your DD on Wednesday, OM. That made me feel better! I do love her and I know I should be more patient, but sometimes I feel just like screaming back at her! What's worse, sometimes I do!

Dinamum - I echo all your comments! I was trying to say something similar but you said it so much better! My DD was down to 20 per cent of school and the threat of home tuition. We did LP and it was nothing short of a miracle! She has been back 100 per cent of the time (give or take the odd day) since March. I totally agree that LP gave her the tools to be well and stop running the ME loop. For instance, this week she has had a headache and as I said previously I began to be worried but she has used the process and has been to school for the rest of the week despite her headache. This time last year she would have been off for the whole week as she had no confidence in her ability to be well. She is out now at a film evening
It's so nice to hear your comments regarding LP as you are an adult who's done it and you are able to express the benefits first hand to everyone. I went on the course with my DD but I haven't had ME so it's difficult to imagine. I have found the techniques useful for me when dealing with anxiety etc etc

Thank you Dinamum for giving us a positive perspective on all this. It is really encouraging that you are now so well and able to do all that in a day with no trouble. Another LP evangelist - you are in good company on this thread!

Thank you all for your comments.
I have spoken to the head of the specialist unit this afternoon and she was really good about everything. I will discuss with DH tonight, but my feeling at the moment is that we will give it a couple of days, but pull the plug instantly if things are going wrong, whatever CBT lady says!!!

Littlepollyflinders - I hope your DD recovers quickly and bounces back again.

Choc - Poor DD, after such a good start. I hope the tutor can understand your concerns and adjust it all for you and DD.

Education meeting does not look as if it going to go ahead now - my choice!! Postponed so that we can have people there who should be there!

OM - Not as shiny as it should be - and probably not as shiny as yours!!!

Have a good weekend everyone and I hope all Dcs can relax and enjoy themselves.

Hi guys I am so sorry to hear that some of you are having a bad time at the moment. Any consolation I did not want to accept that I had ME. I refused to admit it despite having it confirmed by the Drs etc. I was frightened as I thought it was an illness that did not get better. Anyway I still did LP and LP will work for many issues so you do not need to accept that you have ME. Just do the process and it works anyway.

My heart goes out to your DC as I have tried the trying to be normal, special diets, CBT, pushing myself through it But none of this worked because my brain was still reacting in the ME loop. LP gives you the strategies to cope. When you feel the symptons do the process and it changes the way your body reacts and over time the symptons.

I know it sounds like I am on my soap box and I am no way telling you what to do or how to do it but just that my heart does out to you all. I was there - I was that person struggling to be normal. Now I have just come back from 7 hours teaching, having got up this morning to walk the dog first and drop off my darling toddler at childminder

Littlepollyflinders welcome - but I'm sorry to hear about the accident. Like Optimistic I feel your DD will probably bounce back, but is feeling a little shocked and traumatised right now. Totally understandable in the circumstances. Have heard about the effect that wheat and gluten intolerance can have on a body and thankyou for that information. I don't think it's an issue with my DD as she is so much better without excluding it from her diet, but it certainly is worth exploring for some people.

Choc your DD has made such progress, I hope she can continue. Shame the teacher didn't give you some warning of what was happening and hope you get it all sorted soon. I'm sure DD will cope now that she is so much better and stronger.

Positive - I echo Optimistic's comments about the CBT lady. If she is very experienced in all of this and your DD has faith in her then it should work, if not please be very careful. We have all had some very hard decisions to make and it is a tough time. Hugs to you.

Dwardle - hi, I hope all is well with DD.

Katsh and Nickschick how are DCs.

Positive - for you!The trouble is no-one can give you the answer you want.
The problem with all this 'pacing' is it doesn't get down to the nub of the problem imo. Your DD is still running the ME neurology and has no real tools to help her when she feels ill. As you know, LP is totally the reverse of what pacing is about because it believes that pacing focuses on the 'ill' bit all the time and gives no tools to use to get back the 'well' bit.It becomes a vicious circle.
If you are going with the CBT lady, however, I think you must follow her advice and not assume there will be negative consequences. Has she worked with ME before? Do you feel she is an expert in dealing with this? That would be my only concern. Does she actually know what she is talking about regarding ME/CFS and has she seen recovery in other patients of hers using her methods?
Sorry to be pushing with lots of rhetorical questions but I've been thinking about you a lot and it's the best I can do!!!

At least your house is shiny!!!!!!

hello all - sorry so many DCs are having problems managing school atm.
Positive - when you said CBT lady said go ahead with plan to increase time at unit regardless of the fact she is not doing brilliantly, a big alarm went off. To me, that does sound very graded exercisish too which as you say can have totally adverse effects. I really really feel for you with the issues of self esteem and being positive etc etc, but my view is to increase could just make things worse. I dont envy you your decision one bit.
Nickschick - I agree, you cant even entertain the idea of any of these therapies without DS being on board. Perrins needs a lot of commitment and is an on going longterm treatment, not an easy fix (plus financial implications of this!).
Polly - welcome here - hope your DD recovers OK. She has understandably been traumatised but hopefully given a few days doing very little,she will be OK.
Optimistic - hope you and DCs are feeling better
21 & Dwardle - hope things are OK
DD wasnt very well last weekend but has done really well this week. Walked a bit further, went out for lunch yesterday. Unfortunately, the online teacher decided to increase the number of classes from 2 to 4 this week and this morning DD was stressing herself out completely about not being able to cope, having an assignment to do and feeling sooo tired. I basically told her to skip the class and rest and we emailed the teacher and asked whether the number is likely to be 4 permanently or was it only a one-off, so that we can pace this better. Like so many of our children, DD is very hard on herself and has far too high expectations which she needs to learn to reduce. Sorry this has ended up so long, have a good weekend everyone.

Welcome Littlepollyflinders! I'm glad you found us and am really hoping that your DD is back on track by Monday! I'm sure she will be. In my limited experience, when our DC have something that has had a huge knock on effect we can't quite believe it when they are well. OK, she had an accident and had whiplash but there's nothing to suggest she will take to her bed for the duration! I'm sure she prefers her new-found health too. Just try to look on it as an accident that lots of people have and she will be back to normal in a week or two. If not then you have to be 'tough mum' and push her back into her new life.

You didn't ask for opinions but, hey, hope some of that made sense and we do all understand your hopes and fears !!

BTW there is lots of useful stuff on this thread and it is well worth a read even though it will take you ages.

Hello all - am joining this thread as dd has undiagnosed something or other that has disrupted schooling for ever but most particularly last year meaning she has to re-do the year (AS levels and do an extra year to catch up.)

Thing is we (randomly) took her off wheat and gluten which had an amazing effect. She was sleeping well, waking up early, hasn't had a single panic attack or missed a day of school this year (3 and a half weeks - unheard of!)
UNTIL... she was in a car on Monday when a van reversed into it knocking her head on the head rest. Car and all were fine - so was she immediately but since has had the inevitable whiplash and has taken to her bed again.

I'm so hoping she'll be ok by Monday and be back on track.
She was doing so well and I can't bear the thought of her falling back into old habits and hope she can remember how good she felt being able to engage with school/life/friends etc.

Oh no, me again, needing to pick some more brains!!!

DD is really struggling - Nickschick, ours sound very similar!! - hard isn't it???

Anyway, just phoned up the clinical pyschologist (CBT) lady, and explained that I was worried that DD really is not coping with the 1 hour and was supposed to be increasing to 1 hour 10 mins next week. But it will destroy dd's self esteem and confidence not to be able to increase as she wants to. Her response was that we should keep going with the increase as DD will get used to it over the next few weeks/months!!
Will she get used to it, or will she crash down further and further and we face another winter of total 24 hour care again?
Where does CBT cross the line to becoming graded exercise, which I understood to be really bad and just pushing on regardless of how you feel? Or have I got this all wrong and am just being a protective mum??
Fed up with all this!!

Although it does sound as if you are all fed up too, which is reassuring, sorry!!

Nickschick is it any good trying to explain that if Sam had a broken leg he would need help to get over it. In the same way there is help available that may help him to recover. For OM and Dwardle's DDs it was LP, and for my DD it was homeopathy, CBT and pacing. Thinking of you and Sam..

Optimistic - well done to DS1!!! . Were you there cheering him on? Sorry you may be coming down with the cold, hope it isn't too bad for you.

Hi to Dwardle, Choc, Positive and Katsh - hope things are OK.

Nickschick - am so for you atm...Why do you think that Sam won't accept his illness? If it helps my sister - in -law's brother was the same at Sam's age. He had CFS plus Chronic pain. In the end he discovered a love for graphics (he was a computer wizz) and as he told her , he found something that made him want to be well again for. Or rather it gave him the motivatin to accept his illness and then accept help. Does that make any sense?

21again - DD still looking ill and I am now mortified again as today, guess what? I have had a stinking headache too and DS2 is also feeling bad....She did go in and will tomorrow too i think.!

I am feeling v. proud of DS1 who goes to local grammar and scored winning try for his rugby team against local top public school . So I'm being a dreadful competitive parent but had to share my smugness with you all. Please forgive!!!!

ty 21again im a sympathy sucker ......

The thing is until Sam acknowledges what he has and tries to understand himself nothing will work bcos as it is he feels a failiure and fights his symptoms until its too bad and he cant fight anything.

I tell him everyday that he is Sam his illness doesnt define him its just a rocky path.

Nickschick - so sorry Sam is feeling bad. You, Positive and Katsh are having such a hard time watching your DCs right now. Have you read Choc's posts on the Perrin Technique? Her DD is having good results and it may be of interest to you. I am thinking of you all and hope things pick up soon.

Dwardle and Optimistic how is everyone?

hello everyone else xx

Thats very interesting alypaly and something I shall be enquiring about.

Positive and Kasch its bloody awful this isnt it? the uncertainty and the limitless.

Sam again isnt well hes exhausted spending 15-18 hours in bed quite literally,last night (well early evening cos hes back in bed by 9.30-his choice )he 'managed' to venture outside the door and 'stood' on the pitch for a grand time of about 8 minutes.....his friends were so glad to see him as were we that he was 'able' to stand on the pitch .....looked out again and hes sat on the pitch 'supposedly'messing with his fone - he wasnt he couldnt stay stood .

We have a appointment soon with the consultant and the physio.

Sore throats all round at the moment but DD does seem to be coping with it ok. She has been taking all sorts of homeopathic remedies over the past few months and amongst them is an immune boosting one which hopefully will help her now. Sorry Optimistic and Dwardle that your DDs are poorly right now, it does seem to be unavoidable, and I hope they feel better soon.

Positive and Kasch your poor DDs are suffering and it's hard to watch. Is it worth keeping them at home for a few days to get them back to a reasonably stable condition and then start pacing again? I don't know too much about pacing as we didn't ever see Doc Crawley but that was what worked for our DD.

Alypaly thanks for that information, really interesting.

Hi Choc how are things?

if you have children it is known as slapped cheek syndrome. Most youngsters get it from the age of 4-10 normally.
They get very red cheeks and a rash and are off colour for up to 10 days. They just need calpol and sometimes a few days off school. Parvo virus in adults is like chicken pox ..in that it can make you very ill if you didnt have it as a child.
It left me with symptoms of chronic fatigue and ME which is why I came into this post.
Wondered if anyone had asked for immunoglobulin treatment to get rid of ME and chronic fatigue.

alypaly - just read article. Really interesting. So glad you are now fit and well.
Stupid Q - what is parvovirus?

positiveattitudeonly
yes i was that 42 year old believe it or not.. Didnt know the clinician was going to put his results on the internet...found it when i was scrolling through parvo virus papers. didnt name us but i knew how many were in his trial and what the results were.

I am sure it can be used to help people recover from glandular fever and other nasty UNKNOWN viruses.

The immunoglobulin just mops up the remaining viruses and then it give you like a multi protection using other peoples anti viruses

OM - just re-read your post and can really sympathise. There are loads of bugs going round - my ds has shocking cold and loads of dd's friends have it too - is so hard to think 'normal ill' not 'me ill'
DD's therapist once said to me ' why would she want to miss school' and I had to stop and think. So easy to get cross too, isn't it!
Hope the rest of yr day has gone ok
Big hugs all round.
dd went to school again today and has been upbeat despite pain and sore throat - which she tells me everyone has got! Think I need a holiday!

Katsh - so pleased you said NO to your dd going into school Do not be pressured.
My dd's consultant came out to talk to her school - very useful.
Also, at my school,we quite often have multi-agency meetings where everyone gets round table to discuss - very helpful. There is also a thing called a CAF a common assessment framework - which can be started by a number of different agencies. Ask me more if you need to. You know your daughter - and have a good understanding of me/cfs.
Pos Att - think it may be a sort of breakthrough!

Thanks Alypaly, Really interesting read! I am pleased you are now fit and well. Were you literally that lady, that did the trials?

i was treated for parvo virus which was eventually detected when i self diagnosed,but Immunoglobulin therapy helps many post vral serious illnesses.

Have included web page for any that want to read.
http://www.prohealth.com/library/showarticle.cfm?id=4809&t=CFIDS_FM

I was that 42 year old woman.tired,exhausted ,fed up with all tests coming back negative so i went looking for a cure and got it.

if anyone wants any help,just ask

ask your consultants about immunoglobulin treatment. I had it after suffering with post viral complications from parvo virus. I was lucky enough to have been put on a clinical trial. It worked within 10 days of initial dose and i havent looked back.
BTW I was so bad with ME type illness i thought i hadnt got long to live.
I was treated at the manchester royal infirmary and it has been a total success

Thanks positive and optimisitic. I got on with trying to answer my own questions this morning! Told school she wasn't coming in, and then found a local carers support team, who are sending someone out to talk me through my options and how to deal with the la on this. I really could do with help, as I have no time ever in the week to myself - either to leave the house or stay in with dd cared for. I was due to start an MSc but have had to defer for a year, so it's felt a bit crushing to lose that along with dds health. I'm seeing consultant next week so will check she will support me in that. Feeling on the edge of a migraine, so best stop staring at the screen and just try to get through the afternooon. Hope the non-school attendance all round is short lived for everyone.

Katsh - I was advised about getting a carer and first approached the Childrens Disability Team at our local Social Services office in January this year. It took ages to get anything sorted and we had to really fight to get it!! - Don't want to put you off, just be warned! DDs consultant was behind it totally and was fantastic in arguing for me. Her view was that it would be "unhealthy" psychologically for me and DD if I had to have to give up work and do the 24 hour caring that DD needs. - Totally agree with that I think it would have sent me really crazy and really not helped DD at all.
I would advise that you phone up and get someone to come and assess what help is needed. In one meeting when it looked as if we were going to be turned down, Consultant jumped in with the point that DD was less able than a year old baby and social services would be appalled if a baby was left alone at home! I also had to get a little stroppy assertive at one point and I did ask them who would be held responsible if DD fell down the stairs and injured herself - Them for not putting in place what we needed, or me for not shouting loud enough that we needed the help. Certainly did the trick!!
Good luck! It has made a huge difference to me and allowed me to begin to live a little bit again without constant pressure and worry.
Also agree with OM about the school issue. They sounded really supportive, but you do not need to have any pressure. Could the LEA supply a home tutor fro a while, ours did for the majority of last year. If your DD cannot get to school because of illness she is still entitled to 5 hours of education a week, minimum. I really urge you to consider this. If we had given up on school sooner, maybe DD would not have been so bad. We struggled on last year because of all the pressure, but as soon as we gave up the school, the release of that pressure was immense! She can then join back in at a pace that suits her, when she feels able to.

OM - Hugs to you after your "discussion" with DD. I hope relations are restored quickly!!

Katsh - do not let school put pressure on you regarding DDs attendance. It's a horrible place to be . The school are under enormous pressure even with their authorised attendance now but they absolutely should not be passing that on to you. You have enough on your plateas it is. I suggest you go on to the AYME website and print off the 'How it feels to have ME' page and give it to them to read. I never did get my DDs school to undertand that if she's ill, she's ill!!Have you looked into home tuition for her? You could discuss that as an option with school.

Positive/21again - no DD has nt gone in today and we had a shouting match about it I'm afraid. DD does know what it is to be well now but I'm afraid I'm so bad at accepting that she is what she terms 'normally ill'!. I always think she is going to run the ME neurology again. That is something we have to watch as she could easily slip back imo. She is adament however that she just feels under the weather because everyone is having been back for a couple of weeks etc etc. To be fair to her she has had a huge amount of coursework to do since she got back and I think the pressure of today's French oral was a step too far (she hates French and has missed so much she feels very behind!) Again she is sure that is not the reason 'I'd only be putting it off Mum and I'd rather get it out of the way, anyway the teacher's rubbish!'

I don't know.... All I know is that tomorrow's another day!

Positive - not weird - I understand what you mean. That is great that she has recognised that today. I hope that a day at home helps her a bit. I'm finding it v. hard with dd to judge whether to send her to school or not. School are already on at me to increase her attendance ( she hasn't even consistently managed the 3 hrs a week we're trying for), so I feel a bit under pressure. Yesterday on her "home" day I took her to the playpark for a 15 min visit - I wanted to see if she could cope, and wanted to let her have some fun. Anyway she is really tired today - only got out of bed to take ds to childminder.
She's due in to school at 1pm, and although I want to keep her home, I feel a pressure to try. Presumably you've all been there? Reading this makes me realise I shouldn't even be attempting school today.
I also read your earlier post about your review of the carer package. I'm glad that's been kept in place for you. It did make me think that I might be able to get some help for dd, as because of her age, even though she is not as unwell as your dd was I can't leave her at all. How did you go about organising it? Who should I be contacting?
Hope everyone else is ok. V. impressed by the goal scoring 21 !

I am at work and have just had a phone call from DD to say that she is not well enough to attend the unit today.
I realise this is totally opposite to most of you and your DDs, and this is going to sound really weird, but I am so happy , Not because she is too ill to go in, but that she came to the decision herself. - fireworks averted for now!! This is a huge step for her, as she is adamant that she is better now and will not normally listen to us when we say she still has a way to go to be 100% fit. - even when collapsing in a heap because she cant make it to a chair! She says all teenagers get tired, which they do, but too tired to walk to the nearest chair?? I am beginning to think that she does not remember how "wellness" feels, as opposed to "illness", so she accepts a level that others would feel very unwell at. Am I making sense?? It makes sense in my head anyway!!
My first step was to get her to recognise the illness again, now we can work on how she will respond to it, if you get me! I think I'm becoming a bit of a psychologist with all this!!

21 - glad your DD seems to be doing well and pleased with the hockey!

OM & dwardle - Sorry that things are a little up and down for you too. Your DDs have come so far though and have done so well. All the research I have seen says that the autumn is the worst time for downward slides, so I suppose it is something we ahve to accept a bit and adjust to. (although probably not in line with LP thinking!) I hope they both make it to school today.

Katsh - How are things with your DD? Hope things are ok.

Here DD is much the stubborn same!!! (ggrrrr!!!) The tireder (oh teacher, is that a word!!!????) she gets the more stubborn determined she is to prove that she is no longer ill and can do anything. She hasn't actually managed to get out of the house, other than the 1 hour school for at least a month now. The more I try to persuade her that maybe 1 hour at school is too much the more she digs her heals in. I am letting it go for a while, but will have to dig my heals in if it continues, which always results in a spectacular firework display of emotions!!!
Anway, we survived a "review" of her carer package yesterday. I was petrified that they would say she no longer needs to have a carer as she can now walk to the toilet and feed herself, but the lady was very nice and when i explained how things were when she is not having a good day, we agreed to have it in place for another 3 months, 20 hours a week, while I work. To be honest I would love not to have other people around in my house as I do like my own space, but it does mean I can go to work and not be worried about DD falling, choking or not being well at home alone.

Off now to do some quick housework before work (impressed OM???). Hope you all have a good day and DDs are ok today.
Mrs Evil

DD much better tonight. She played hockey again today and scored two goals so she was on a bit of a high when I picked her up. She does seem to have been up and down lately but things are definitely levelling out now that she is feeling more settled and into a new routine.

Optimistic don't take this the wrong way but somehow it's reassuring to know your DD looks wiped out. I think that whenever my DD looks like that I start to panic inwardly and wonder what may be happening to her. I forget that they all get very tired and it is perfectly normal for all DCs to be like that and to go to bed early as a consequence.

Must go DH just pouring a glass of wine for us both, for some reason it is going to go down well tonight .

Thanks for that OM!
Will do that tomorrow

Dwardle - I emailed our practitioner direct as my DD was just as awkward. Tbh it was me that was feeling worried not her. The practitioner put my mind at rest and so I handled DD better. Your DD probably doesn't feel the need to email. It's you who needs reassurance! does that make sense?
My DD looks wiped today.... She has a huge amount of homework but I have persuaded her to go to bed in a minute and she has done her work in small chunks this evening. I hope I've managed to 'talk her out' of a skive attempt tomorrow!!

Must go and check she's 'getting on'

Talk later

21again - thanks for your post. It's OK I wasn't feeling odd about posting just that I couldn't think of anything to say. !! Just wanted you all to know I am here!!

OM - my thoughts entirely re LP practitioner but have not yet got dd to actually email her. Is hard as I do not want to make her.....but!
Why is life never easy
How is yr dd's throat today, 21again? In answer to your q, yes, she should be using LP on her symptoms but she is not being v easy this week!!!! Glad you had such a lovely letter too.
We have just had v helpful meeting at school - they are great.

Meant to add we have had a lovely letter from the Headmaster at DD's old school wishing her success, and stressing that the door is always open to her should she ever consider returning. I wish all schools could be as helpful and supportive as ours has been.

DD has a sore throat today and has not been sleeping well but she is still going to school. The sore throat seems to be doing the rounds at the moment at her school so there's not much we can do about that apart from dosing her up and gargling etc. Her homeopath has left out some remedies for her which should help her sleep. DD has huge faith in the homeopath and so it will probably give her peace of mind and may help her to relax properly at night. I think that with all she has been through recently it is not surprising she is having this problem but I seem to be on tenterhooks the whole time waiting for a call from school. Will it ever go away??

Optimistic your views are always so valuable, you should not feel that you don't need to post. It is also good to hear how your DD is getting on, we all love hearing from you .

Dwardle I know just how you feel right now, as you can see from above. Part of me wanted to keep DD at home and let her rest but the other part told me to treat her as I would her sister - who incidently had a bit of a sore throat last week but not enough to keep her at home. Does your DD use LP on symptoms like those she has just had?

Positive your DD is doing so well and she is so determined. I am glad she is feeling a bit better, hopefully she and you will feel encouraged by this and she will continue to improve.

Katsh, Nickschick and Choc how are things?

Dinamum thanks for your post. I know that LP has helped so many people and I am glad you were one of them. Our DD was not a candidate and hopefully is recovering without it but I have not discounted it.

I'm here! I read this thread daily but don't always post because I don't feel I have anything much to add!!!
POA - I'm not up to speed on the education stuff so am trying not to muddy water! I knew Dwardle would be helping.

Dwardle - never mind GP/Paed...what does LP practitioner say?it sounds like your DD is still doing a few ME symptoms and you need support to overcome these hiccups.

Dinamum - it's so lovely to hear from an adult who has done Lp successfully for so long. I wholeheartedly agree with your post but it's nice to hear from another source!!

21again - how's it going?

Hi to Katsh, nickschik and choc. Hope your DCs are feeling OK today.

Yes, its ok i am not being ignored! Don't worry I would scream and shout very loudly if I thought you were all ignoring me!!! - Or go and hide under a stone somewhere and cry.

Dd appears better today, more lively and not so tired.

Dwardle - hope this week is better. Do we ever relax and go back to being the same again? I can't imagine not worrying now. I was never a mum to trot off to the Dr or anything, but when any dc is ill now for longer than I think they should be I start to watch for every sign going.

Someone at front door got to go.

OM where are you??

Hi Dinamum - is not a private thread and your wise words are SO welcome!Lovely to hear from you.
My dd is one of the LP ones.

Katsh - just a thought. One way I coped was by finding others who had dcs with cfs/me or had had it, and discussing. This was on this thread and via someone I was put in touch with. Knowing I was not alone, that my dd had similar symptoms, and that dcs DO get better really helped. I also printed out stuff off Gt Orrmond St website which was calming. I also thought - it IS OKAY to feel very p**d off about this but that won't help so I felt like that, got through it and tried really hard to cope. Had good network of professionals who gave reassurance too, which really helped.

Well - last week, after full wellness since 20 July, we had the 'headache'. Paed checked her over on Friday but could not find anything amiss.(she had not heard of LP but was VERY interested, positive, supportive and took website address)
Headache gone by Fri pm.
Sun eve - after full well weekend inc dd in gym at 8am sat with a pal - we have the pain!
Just hovering around the appendix area but no other symptoms - so - I took her in to see GP - who could find nothing.
So - I took her to school.
Am I a horrible, unsympathetic person, too hard or what?
I so sympathise with all of you and the hard times you have been having over the last few days - have been lurking but not typing, but believe me, it's still not all plain sailing here either.
Send huge hugs to you all. Am working at home because ds, who is never ill, has AWFUL cold
am helping positive re the school thing in another place in case anyone thought I had been singularly unhelpful!
21 again - are you still smiling? Katsh - send you big hugs - and everyone else.
Must go back to work now.

Sorry for typos -toddler on my lap - helping!!!

Hi really hope you don't mind me posting but the thread title caught my eye. I had ME for 5 years - bed ridden for some of that time. I know some of you have already tried LP with your DC but to say that I found it the answer for me. It was not an instant cure but it gave me strategies to cope when those ME symptons appeared. Reading these threads takes me back to when I tried to be "normal", pushed myself to get back to work for a short time each day just to crash out on my returen. After using LP this no loner happens. I just really wanted your DC to be aware that it will help them and that they will get through this awful illness. I reckon we recoverd ME suffers can cope with anything after getting through this illness!
(Also some of you parents may help the LP ti help you to cope with your recovering DC)
Apologise if I have pushed into your thread but I do understand what you are all going through.

Hi all,

Rubbish weekend here. Did a major panic - me, not DD!, about the fact that she seemed to be going downhill so quickly again. Had difficulty walking around at home and spent the whole weekend on the sofa, not even really aware of what was going on around her.
We had a talk about the fact that it might not be wise for her to go into school today, but she was insistant that because she had signed a home/school agreement with the words on about the school expecting 100% attendance, she HAD to go in!! I explained that illness was allowed, but not very successful in persuading her.
Today she did seem a bit better and brighter. She has gone off for her 1 hour, so I will see how she is tonight.

Hope everyone else is doing OK.

Just bumping up the thread, hope everyone has a good week. Will be back on later .

Katsh and positive hope things have 'looked up'...Hi everyone else hope your all well.

School really is a big thing for our dc isnt it?,its such a shame that on top of what they already feel no matter how we address it school becomes the issue,for us to home ed Sam was to give him a restful time and hope he could 'recoup' (this was before the official diagnosis) now he is at school he is 'determined' to be 'normal' but he isnt and he cant even accept he has the condition let alone work towards living with it.

Positive I cant see how your dds illness can be 'irrelevant',Id definitely want it acknowledging at any meeting with school.

Hi All
Positive first - Can you get hold of a copy of the review document that your LA are using? When is the meeting?
Sorry - going to have to go - will post tomorrow

Thanks for all the hugs ladies Yesterday continued to be a not great day, with the prolonged and painful loss of one of her teeth at teatime causing quite a lot of additional stress. Anyway she's not been so bad today. It was sunny and I had no plans to do anything at all, so she was well paced and rested, and we did manage to leave the house for a while to walk the dog and the toddler . DD was pushed in a pram, but did have a little play at the playpark, and survived it all ok. I made playdough this afternoon and the three of them ( including my ever so sophisticated 9 yr old) had a great time doing cookery shows in the garden. So here's hoping the cold isn't coming and yesterday was just a blip.
21again - glad your dd had such a good day at school on Friday. Nickschick sorry things are tough for you at the moment. Hope tomorrow is a good day.

Nickschick sorry to hear Sam is not so good. Has he acknowledged the illness yet? I seem to remember he was in denial about it for some time and wouldn't consider pacing or any other treatment for that matter. He has been ill for a long time, would it be right to perhaps consider lightning for him or would he not entertain the idea? I hate to think of all our DCs going through such a bad time and wish it could be better for them. I think my DD is coming out of this now and feel that her new school may be the final bit of help she needs, but everyone is different and what works for one doesn't necessarily work for another.

Positive sorry also that your DD is finding it tough. We didn't really have to embrace pacing in quite such a drastic way as you and so I can't be sure if sleeping in the afternoon is "allowed". It was one thing that our DD didn't do too much of even though she was so tired. I know that the others who have seen Dr Crawley will have more advice for you on that. I do hope she picks up soon and at least she is certainly better than she used to be - you must remember that, it is a good sign .

Half my post has just disappeared and I can't for the life of me find it so hi to Optimistic and Dwardle and Choc, hope your DDs are well. Katsh did your DD catch the cold? How is she?

Positive attitude the bit where you say that your dd snuck away to rest 'hiding' it from you is so typical to my ds for a long time i believed he was upstairs playing on the x box or ps2 and it was only when ds1 told me that really he was sleeping and hed discovered quite by accident that Sam was actually sneaking into his brothers room and sleeping- Sam is so desperate to be 'normal' he resorts to tactics like this.

Everyone seems to be having ups and downs at the moment.

Things here arent so good either.

Thankyou all for forgiving my absenteeism ignorance.

Katsh - Big hug for you. So sorry that you and DD are having a hard time of it. We have all been there, just hang on in there and it will improve. I really hope dd has a good weekend. It sounds as if the school are really supportive.

21 - I am pleased your DD is enjoying the new school. Have a good weekend.

Choc - Glad the online school is going well. That is a really positive step for your DD to feel good about herself.

dwardle - Hope headache didn't turn into anything. You must be so pleased how well your DD has done. Long may it continue. I really hope all the bad CFS is behind you.

OM - Ditto from above, except the headache bit!

Here DD had seemed to have coped better this week at school (1 hour) and I was so pleased that her downturn seemed to be just due to everything being new and different. She is so determined to increase her time there. However I had noticed that she seemed to "disappear" for at least an hour or 2 each afternoon into her bedroom. She has always wanted to go there to have some space to herself, but when DH came home yesterday I was just going to investigate what she was doing, but DH got there first and she was totally zonked on her bed. Talking later she is trying to hide from me how exhausted she actually is because she thinks I will say she cannot increase her times and she is just so desperate to be "normal". We have opted to keep going, but she has said she will be more open with us about how she is feeling, so that we can just do what will be best in the long term.

dwardle & OM - Can i please pick your education brains. I am so very happy with the way we have been treated at the unit. They believe what i say and treat DD with belief and respect. (Totally alien concept after the school last year) However, the school are still very much involved as DDs place at the unit comes out of their budget. We have got the date for DDs final statement review before she leaves compulsory education. This is organised by the school (urgh!!) but with input from the head of the unit. I am already getting very wound up about the review as I feel as if 2 worlds are going to collide. One from the school where we were treated so badly and one where we feel so differnetly. I need to know how to handle this. Also, at her review last year I was told not to mention her illness as it was irrelevant. How can it have been irrelevant if it reduced her education to 2 x 10 mins per week for the rest of the year???? Am I allowed to bring her medical issues into the discussion.? Surely that will have had a huge impact on her future education. She will leave school with no qualifications as we are using this year to get her back to a "normal" life, but don't want her put into the "special needs" group at the college next year as we feel she is not in need of that "specialist" group. Any tips????
Sorry, a bit disjointed all that last bit and I will come and explain more if you need me to. Just had a bad mum time after dropping DS at swimming at 6.30 am and forgetting to collect him at 8.30!!! Now got to take DD2 to work, but have typed so much I do not want to have to start all that lot again, so please excuse this awful ramble, but I hope you get my gist!!

DD had a good day yesterday and came home on top of the world. DH picked her up from school and had been waiting where she wouldn't see him. Her body language and whole attitude was very positive and she seemed completely at home and relaxed with the girls. We now have to continue to help her to remain positive. She has shown she can overcome this last hurdle now and we must support her and keep her bouyant.

The advantage of the new school is that it is much smaller and the staff are very much more involved with the pupils. DH phoned yesterday evening to confirm how DD had been getting on and the lady in the office said that she had noticed what DD was eating that lunch time (bearing in mind what had happened yesterday). They know she has been ill and were aware of what had happened on Thursday. It certainly does help to know they are so watchful.

Katsh - how is DD today? I do hope you have a good weekend with her.

Positive - is DD getting to the unit ok? Hope to hear from you soon.

Choc Dwardle and Optimistic - hi how are things?

Katsh - am sending you a big hug. I'm sure you are right about DD coming down with a cold. Can you get some of those great friends of yours to come round over the weekend so that you aren't on your own, stuck in the house?

Have a better weekendx

Not such a great day here - dd all set to go to school this morning - up, dressed, breakfasted and then went down for a rest ( which is usual), and just couldn't get up again . I'm not sure what has knocked her, but she is so fatigued today, and has spent almost the whole morning on her bed. She got up for lunch, but has chosen to go and lie down again. Her little brother has a cold, so maybe she's about to come down with it. Dh is away for 48 hrs so I'm hoping she's not this bad for the whole time, or the others are looking at a Saturday stuck in the house.
21again, I hope that lunch is "nice" today . It's hard for the dd's and for us to separate the normal things that happen - eg don't eat, feel dizzy - from the CFS stuff. You sound like you were pretty clear on it, so I hope today has been better.

Good for you 21again.

I have to say that my DD takes in a packed lunch now and eats in bits and pieces during the day. At least then I know she will eat what she takes. Would that work for your DD?

Glad to hear all is still going well. What a momentous couple of weeks for you!

xx

Katsch - that is exactly it. I do feel, like Choc, that our DDs will ultimately be better people because of this. How is DD today? Do hope she is coping. She sounds such a wonderful girl and a credit to you .

DD felt sick and dizzy yesterday afternoon but has gone in today. She ate very little lunch and then wonders why she should feel the way she did. These symptoms are exactly what her therapist said she would have if she didn't eat properly. Apparantly cottage pie for lunch "wasn't very nice". What on earth can be that bad about it??? Some stern talking from us telling her that she was not ill, everyone gets dizzy if they don't eat etc and that she would be ok. She is seeing her oldest and best friend tomorrow who she hasn't seen for some time, so that should give her something else to focus on.

Hi to all, keep in touch..

Oh Katsh ... what wise words from such a little girl, they brought a tear to my eye. I do think it is totally true that because of this path our DCs have been forced to take, they will get a different view of life from what they would have without their illness. Although there are lots of downs, they may well end up with a broader view of life and almost certainly will end up being more empathetic towards others.
Glad DD is enjoying school 21.
hello to everyone else - hope school is going well for your DCs too.

choc, dwardle, optimistic, positive, 21again - thanks for your responses. Glad to hear that things have picked up for your dd 21. That all makes sense and sounds like she can just relax. On the subject of not going back to who they were pre-illness my dd and I were talking all about the different routes up the mountain that we all take ( inspired by the Hannah Montana song " The Climb" - little girls are very into it so we listen to it endlessly ). She said that she's gone off the normal path, and is on the " bit unwell" path, but that we'll all go up and she'll learn different things on her path, but will still be being " who she's meant to be" It's hard to remember that and not just wish for what we thought life would be for them. I found her very encouraging.
I think I will talk to my GP - he's not great, but worth a shot!

DD is a different girl now. I think she is feeling accepted by the girls in her class - who all seem really friendly - and she is wanted in the hockey team which has boosted her confidence hugely. She is lively tonight and happier than I have seen her for a long while. It is as if the pressures have been lifted from her shoulders and maybe a complete change was what was needed. She is no longer reminded of what she was prior to illness, or what she had become and what her limitations are. She has nothing to prove and can start from scratch. Does this all seem logical?

Dwardle - sorry about DDs headache and I hope she is feeling better now. What great friends she has and I hope no one was hurt in the fracas!!

Optimistic - hope your DD is also better now, you know she can cope and you don't have to worry about any relapses now.

Katsch - I have also felt the way you are. I can remember breaking down watching the girls in DD's year all running out to a games lesson looking so fit and healthy. Our paed did insist I took ADs for a while and they did help me. I wasn't sleeping and I know they are not for everyone but he was adamant that I should not allow DD to pick up on any sadness or negative feelings from me. I don't take them now and they just helped me through Christmas and early new year. I have always found it helped to talk to DH about DD and we have exhausted the subject on a very regular basis. Like Choc I have met someone else locally who has a DS with CFS and it helps to talk to her.

Choc - good news about DD, she is doing so well and it is lovely to read of her achievements.

Nickschick - welcome back, how is everything at the moment? Are you seeing any improvements?

Positive - how is DD today? Hope she is still able to attend the unit, it sounds a wonderful place.

Thank you so much for all your kind words and support.
Just off to cinema with dd today was another day!
will post properly tomorrow.
dd's friends are so supportive of her that when a boy was making comments about her absence yesterday, they defended her so vigourously that a huge fight ensued!!! Glad she was not there

Dwardle - I meant to add that when DD was ill for the first time after LP, I phoned her practitioner for some reassurance. It might be an idea for you to do the same if you haven't done so already.

21 again - so sorry I pressed 'post' before I meant to! How are you and DD today? Is it still going well?

Dwardle - please,please don't worry!! It's perfectly normal for kids to take a day off in the second week of term. They are unused to the long hours etc etc. If it makes you feel any better my DD is also off today. She is 'DOING ill' ( NLP speak). When I questioned her at least 5 of her friends have been off already.She feels sick. Just make sure your DD is using the LP techniques to deal with the headache and try not to think that her ME is flaring. Hopefully she is back in today....

Katsh - really interesting question and I'm not surprised you're down. When faced with 30 healthy children it just serves to underline your own child's ill health. At my DDs Options Eve last year I cried on the deputy head when exposed to hundreds of healthy girls and their healthy parents. Hopefully that will make you feel better.! I actually have 2 great friends who paid me the honour of researching CFS/ME so they could talk to me with some knowledge and understanding. Otherwise I found this thread a complete lifesaver. I also had some 'talking therapy' myself so that I could support my DD effectively. I used 'human givens' as I really liked the mix of therapies particularly the hypnotherapy. It's vital you look after your own emotional health.HTH

Hi to Positive, Choc and Nickschick .

21 - that's really good to hear. Hope she has a good day today.
Positive - glad DD likes the unit. Just succeeding in doing a little bit will be positive for her.
Dwardle - hope DD is feeling better now.
Katsh - sounds like you did really well. It is tough when you are faced with how your own child should be x30. School sound really good and supportive though which is great. Your question is a very good one - I'm not sure I really offload on to anyone other than DH. I do talk about things with a couple of friends but after DD being ill for so long, I am acutely aware that they really dont understand the whole picture. I have met one lady locally who's DD has ME although more mildly. It was she who put me on to Perrins and we get on well. I really think the support of this thread and the AYME parents forum have been worth a lot to me. Counselling may give you strategies to cope. Sounds like you should definitely have a chat with your GP. Is he/she supportive. Remember that you need to look after yourself as well as your DD ...that goes for all of you ladies

DD is doing really well atm. After a brief visit to Hallmark last week, we went to Accessorize on Monday evening, 20 mins travel each way, parking on the blue badge right outside and around 15 minutes inside the shop. Not much but it is the first time in 2 years that she has been able to do this. She is loving "online school". She says she hadnt realised how much she was missing being in a class and learning environment.

Hope everyone else is doing OK

Hello all.
Dwardle - hope that your dd is feeling a bit better today. Has she made it to school?
Positive - the unit sound great. I hope that things are a bit less exhausting and more stable this week.
21again - what a huge decision, but sounds like such a good one. I'm glad your dd is happy so far.
Nickschick - how is your ds? Thank you for taking time to respond to my query.
om - I smile every time I read about your dd!

We're having a mixed week. The weekend was tough because dd went to a friends birthday party ( sports party 1 1/2hrs) and didn't particpate but sat with me. HOwever that was enough to wipe her out for the next 24hrs, and leave her a bit drained. She went to school on Monday am for 50 mins but was in very bad form by the afternoon. Yesterday, at the request of her teacher I went in to talk to her class about her illness in order to try to encourage them to befriend her. It's a new school so she only knows 4 kids in her class. I was dreading but managed to hold it together in front of a class of 30 healthy 7 yr olds, but it really did take it out of me. Felt v. down since. Not at school today or tomorrow - hopefully back for an hour on Friday. I'm definitely not managing my pacing so well - you really have to keep very motivated don't you?
Can I ask who do you all " let it all out to?" I am very wary of talking to my friends too much, as I don't want to become that all I ever talk about is my dd, but at the same time one definitely needs an outlet for some of the stuff we're trying to deal with. Dh is great, but I don't want to bring him down too, if that's how I'm feeling. Thinking of asking GP for a counselling referral. How have you all managed?
Have a good day.

Don't panic dwardle, How is she today?? thinking of you both.

dd woke with bad headache this am so did not go to school today

Don't know what to think

Delighted to hear about your dd, 21again - brilliant news

Positive - that sounds like a good meeting on the whole! It IS progress and the unit sounds wonderful - am so pleased

Im back .... sorry for not popping by more often .

21again I think you made the best decision to change schools and I think long term this will work out far better.

opmumma and dwardle,I think your dds are doing so well.

Hope everyone else is ok,choc n katsh we did pull ds out of school for almost 3 years but he was so insistent he wanted to go to secondary that was 'his' goal,it does work short term but for a sociable soul like my ds it is very limiting.

All is well .

Huge sigh of relief tonight. DD has had a good day, she feels she is making new friends already and certainly seems happier. The nerves this morning were hard for her to deal with, but she did deal with them and does not seem to be suffering. I feel I may begin to relax a little as there are no symptoms showing so far.

Positive - it is really good to read that your DD is coping better than she did last week, what a good sign. Like my DD she has had to cope with the stress of starting somewhere new and obviously she is not as far on the road to recovery as my DD. If you think about it she seems to have dealt with a huge amount and is coming through well. This can only be a good sign .

I do hope everyone else is ok and thankyou again for your support, it means such a lot .

*21 again* - really hope today was ok for your DD. <<big hugs>>

Thanks for all the kind thoughts thrown in this direction. DD had a terrible weekend and yesterday we went to see the Paed consultant. I thought DD was looking quite unwell and i could see she was struggling to cope. The consultant was really positive and encouraging. She had not actually seen DD since June, (Phoned many times, but no face to face meeting) when we were feeding her and she was unable to stand, she was choking and had a real problem with her feet going black from poor circulation. So for the paed to see her walk into her office was a huge step for her. I can logically see why she was enthusiastic. However, I tried to explain that we felt she had gone downhill already. She said that we can expect to be up and down for the next few years, but should not go back to where she was just a few months ago.
DD has been at the unit for yesterday and today and does seem to be coping slightly better than last week. Maybe it was just the first week of it all being new and different after so long???? <<hopeful>>
She really loves it there and all the staff are so caring and fun to be with. I cannot believe it really after all the crap lies not nice stuff we have had from her school. A breath of fresh air!!

dwardle - So pleased that your DD has done so well. Start breathing again!!

om - Pleased for you and your DD too. Long may it continue!!

Choc - Thanks for your support and encouragement. I hope your DD is doing OK.

Katsh - How are things with you and your DD. Has she been OK with school. Thoughts and big hugs for you.

Tearful this morning in the car and obviously nervous. Am counting the hours to pick up.

Positive how is everything?

Good luck for tomorrow, 21again

How is your dd today. Positive? Really thinking of you.
21again - am sure tomorrow will go well.
Choc - how is yr dd and how is the study going?
Katsh - how about you?
OM - glad things are good with you.
Hope have not forgotten anyone!
I am still holding my breath with a smile

21 - a shorter week to start with then, which can't be bad!
Positive - sorry DD is so poorly. Hopefully she is a little better today.
Everyone else - hope everything is going OK & your DCs are coping with school OK

Positive I am so sorry your DD has been feeling so bad again, is she any better today? It may be a good idea for her to talk to her therapist again while she is feeling bad so that said therapist can try to deduce what has triggered this off, and also try to help her deal with the symptoms. One of DD's problems was always the fact that she rarely spoke to her therapist when she was experiencing symptoms and he therefore found it hard to help her (although I am sure he did do some good especially at the beginning of the year). Let us know how she gets on.

DD has not gone to school today - they want her to start tomorrow so will update tomorrow.

21again - I feel sure that you have done the right thing. In the end we all have to rely on our gut feeling. I quite agree that it was too big a decision for her to make. Can't really add much to everyone else's posts as I wholeheartedly agree with all of them!
Having met you both in the summer and from what you told me your DD certainly did long hours which can't have helped. It would also have been devastating for her to be dropping down sets and not being in the teams etc when she had been used to being there.
Well done to you and your DH who have obviously worked as a team. Don't write off LP because if DD does get symptoms she would certainly benefit maybe not from the original practitioner but from another one.

PAO - so sorry to hear your DD is having such a rough time. Don't be looking down that escalator though!!

My DD is still fine atm. She is much more sensible about bedtimes etc than she used to be and is so much easier to live with. She is also at a very high pressurised school but loves it (as far as any teenager can love school) . If I felt for one second that the pressure was detrimental to her health she would be out of there so quickly her feet wouldn't touch the ground!!!!! The biggest problem we all have is our DC pressurising themselves imo.

have a good week everyone! Big hugs all round.[smile,,

Well done you 21 again. I am sure you have made the right decision. I know it is stressful starting somewhere new, but you DD can now be herself and not be compared to how she was before she was ill. Good friends, who have stuck by her will still be around, whichever school she is at.
I really hope this week goes well. I'll be thinking of you both. Please let us know how it goes.

And I also wholeheartedly think this thread has saved my sanity. Just to have others who know how you feel is great. As good as my friends in RL are, there is nothing like having a moan, or sharing a good moment with someone who know how crap it all is, or how just a small positive step can mean so much.

Bad day here today. DD has had trouble swallowing food again and ended up choking for the first time in a number of weeks and she is lolling around saying she feels bad. I really hope this is not a result of this past week at school!

So good to hear DD is doing so well Dwardle Long may it continue!
Have a good week all.

Gosh 21again.
I am so sure you have done the right thing - your dd's emotional wellbeing is absolutely central to how she copes with everything. If she is happier, and under less pressure - whoever is applying the pressure, inc dd herself, then she will begin to thrive again. Someone once told me it was better to be a big fish in a small pond than a small fish in a big pond and if your dd is in a less challenging environment, she has chance to shine in her own time and her own way (just like Posatt's dd with the basketball the other day) sorry - that was a very long sentence!
Completely agree with Choc's comments
I am sure there will be problems - there are whatever we do- but if she is happier, then that will carry you. Your DH sounds a brick.
I also share your views about this thread and the support - can't measure how much it has helped.
Big big hugs

Wow ....no wonder you felt stressed 21! I suspect a new start with people who didnt know her before she was ill, will be really good for your DD. She will almost certainly be under a lot less pressure at a less academic school and will probably find it quite easy to do well academically. I know you finally made the decision very quickly, but you had done all the research beforehand so it's not as if you moved her without having all the facts available. My DD used to be at a very high achieving school with high achieving friends too - I think this is often the case with CFS/ME sufferers of this sort of age. Good luck to DD for tomorrow and hugs to you. I'm sure once she's "in" properly you will feel a lot better.

Well, I am still trying to come to terms with what has happened . DD has left her school and is starting a new one tomorrow!

Earlier in the year we gave her the chance to move but she turned it down. The school she has been at since year 2 is a good school but very hard work. It has suited DD1 perfectly and DD2 has done very well there until becoming ill. All of her friends are high achievers academically, musically and very good at sport, as was DD2.

Obviously since CFS she has missed out on a great deal and has found it hard to watch her place in the teams taken by someone else. School as you know have been very good and have let DD2 work at her own pace and have helped her every step of the way, but this week she just broke down.

On Tuesday night she admitted how she felt and that she just couldn't cope with it now and asked to go to the other school. We agreed straight away to let her go in for a couple of days to try it out. It went reasonably well, but she then backtracked and couldn't decide, however she was not sure about staying where she was. It was obvious she couldn't make that decision for herself and so we did it for her yesterday, and I have to say the relief is pretty apparant. I know that changing schools in itself is a huge event and will have problems, but we could see that staying where she was would not be good for her. We were very aware of a change in her on Monday when she started back - despite my positive post on Tuesday - and we feared the worst was going to happen.

There will be lots of issues for her to deal with but there will be far less pressure academically at the new school with fewer sporting fixtures and she can still join the choir and have singing lessons if she wishes. I hasten to add that we have always been careful not to put DD under pressure over work etc, but just being in that environment must be difficult and I know that DH wanted her to change earlier this year although again we did not pressure her. Before CFS she was in the top sets in all subjects and obviously has had to move down which again has been a huge blow to her confidence.

I know we have moved very quickly and that in itself is a worry, but with GCSE work starting we felt we had to. I don't know what the teachers among you will make of it, and we will have to live with the consequences but DD was very unhappy earlier this week and is now much more relaxed.

One very positive thing is that she felt dizzy on Thursday and Friday - always a bad thing in the past - but has not had a relapse and I have heard her humming to herself this morning which is such a relief.

We have no way of knowing if this is the right thing to do and her therapist is away on holiday so we just had to take the bull by the horns as they say and get on with it. I must say DH has been an absolute rock in all of this whereas I was an emotional wreck and I know I would not have been able to make the decision alone.

DD has not worked with her therapist this Summer although that had been the plan, she certainly never opened up to him in the way she did with us and so has not benefitted from CBT as she should have done.

Only time will tell whether we have done the right thing, but I thank you for yor support. This thread has been a huge help to me although DH cannot understand it at all. Raphael, whoever you are, your comment meant a lot too.

I do think that if DD had been able to do Lightning we would possibly have avoided all of this, but she was never a candidate and so we have to make the best of it.

Hugs to all of you and I hope everything is going well for your DCs. I will keep you updated.

Thinking of you 21!

Katsh - as usual I couldn't agree more with Dwardle and I also teach (Year 3/4)

Hi 21, Hope you are okay - thinking of you
Hi everyone else - how are things?
Great post, Pos Attitude!
Katsh - I am a primary Head - and was v interested to read your posts about school. Your LA should have someone you could talk to about home tutoring - just to get some ideas. There is also so much you can do at home, not just in the formal way - just talking is so powerful!
Also, learning is hard work and schools are hard places to be, even the really good ones. I think exploring the options other than the short sessions at school is a really good idea and not one you should dismiss. Have you spoken to your CFS dr about this? Ours always pushed a holistic approach, putting the child in the middle, rather than her education, and suggested that the families who beat this took that approach.I was re-reading chocs recent posts and do agree, even tho I am a teacher!!!
We are fine - which is VERY scary - still worrying that a crash might come but really hoping it does not.
Big hugs to everyone

Hope things are OK 21 ..will look in tomorrow

I will be back on later if poss. Thankyou so much for your posts everyone it meant a lot. Much has happened .

21again - <<hugs>> to you. Just a couple of weeks it was me having a wobbly on here, so much love to you. The pressure scale for everyone seems to go through the roof when it is back to school. I really hope you and DD are feeling better today and can relax a little over the weekend.

Katsh - I have to say that a year ago we were really struggling with keeping DD in school. This was before a proper diagnosis and we were fumbling around in the dark really, but after a big barney at the school (me and the head of pastoral care) the first day back after the October half term we took DD home and she did not return. It was the very best thing that we could have done at that time. The pressure was instantly removed form her and us. I had not realised how much pressure we were under until it was removed. I would say that it would be better to remove all pressure and return her to school fit and well and more able to cope whenever that may be. It did not halt the downward spiral of ME at the time, but just made life easier. If you are able to keep DD at home I would say, please seriously consider it.
Pacing is pants as my darlings would say, but it does work! It messes up the whole family and my other dcs have had to really be very tolerant (or have moaned an awful lot) to keep it going. I think if you start off really strictly you can then relax a little and just tighten up if things slip again. That has been our experience anyway.

Here DD has just had the dreaded cbt session, which went ok. DD has admited to her (not me!!) that school for 1 hour a day has absolutely exhausted her! WHOA!! She has admitted that herself!! A plan has been set out for the next 6 weeks increasing to 1.5 hours by the end of this half term and Mrs CBT was hopeful it would work. It is lovely to see DD so happy with school. Yesterday she came home and had enjoyed her first break time at school. Some guys had been playing basketball and she had been sat on a wall watching. DH watched (unknown to DD) from the car as she got off the wall and grabbed the ball and scored a hoop at first touch! The shocked look from all the lads had DH laughing. DD was mightily impressed. This was her first "Sport" moment in 15 months. She used to play basketball for a team amongst all her other sports. Such a small thing, but a HUGE acheivement and success for her.

Mrs Evil is off now, sorry for the long post. I am on here instead of hoovering. (OM-Keep quiet!) Oops too late now kids are home and I have to go out! BYEEEE

Katsh - you are quite right about the pacing. It does require an enormous amount of commitment and must be especially hard in some ways when your DC are smaller.
See how the year goes but I do sympathise with your pulling out of school comment. It's just so difficult to take such a radical step and she, of course, may not see it as you do. Have a nice week and well done for having a successful week. Just don't go overdoing it!!

21again - I'm sorry you are feeling low. I do hope that today has gone well for your dd. Has she managed to keep going to school this week? I hope that you have a lovely weekend . Thanks to the others on the thread for your encouraging words. I'm less weepy and just more tired now . dd made it to school again this morning for 50 mins, so we'vd managed 1 week following our plan and v. rigid pacing. I'm finding that pacing is great for a more predictable week ( so far), but it's incredibly intense and requires enormous commitment ( also a bit hard on my dd1 and ds as limits us all somewhat). Has that been the experience of those of you who have done it?
Choc I'm with you on the " aren't there easier ways to educate them". I do wonder if my dd2 wouldn't be better served by pulling her out of school completely for a term or two, getting home tuition, using her 1 good hour a day for more fun stuff, or meeting her friends, or going to the park with her little brother, and sending her back to school when she won't be the strange child who only comes occasionally and no one really knows. My perfectly healthy dd1 is already having difficult school stuff happening this week, and last night I was ready to pull them both out! Anyway I held off - not quite ready to have all my kids at home all the time!

all my best wishes 21 x

Katsh - hope you are feeling a bit better today. Bring on the weekend!!

21 - hope you're feeling better today but anyway you're in the right place. Also hope DD is feeling better. Realistically however well our children are doing, there's always going to be this worry for us because, at the end of the day, that's part of what us Mums do.
As I know I've said before, the better they get in someways the more scary it gets (Probably more so for us in some ways), the road ahead has so many potential potholes. I get incredible frightened if I think about it too much. I think all we can do is take each step at a time which is very hard to do. Going back to school is bound to be hard for your DD with all that extra pressure. School is a very tough place to be imo, my yd is already off school today (she has her own non ME type issues and finds school very difficult). I sometimes wonder if there must be an easier way to get educated! Enough ranting. Hope everyone has a good day and weekend if I'm not back before then.

21again - I'm so sorry to hear DD is having a bit of a crisis. Do you know what caused it or is it a bit of a back to school reality check? By that I mean maybe she now doesn't feel as well as she did/ enormity (sp) of GCSE courses/changed class group etcs. Try not to worry. Teenagers are difficult to get to grips with anyway let alone if you are dealing with the fear of illness. Your DD seemed very 'together' to me and I'm sure she will gather herself up again soon.
My advice would be don't sit at home worrying about her. Get out and about with friends and family, do what you would normally do. Nothing is to be gained by sitting at home worrying....
Am sending you a massive hug. . Try not to be try to be .
Not sure this will help in any way but just wanted to let you know I am lurking around!!

Things can change just like that can't they? DD broke down Tuesday night in a state (although not a relapse). Lots of fears and emotions coming out and I am very worried about her at the moment. Will try to post when I feel up to it, will value your support ladies. I am struggling .

So sorry I have not posted for a while - been a bit preoccupied with work - but have been lurking.
First, glad you had a great birthday, pos - you deserve it (well, we all deserve treats, don't we)
Glad to hear about progress - and there is clearly lots. 21again, your dd sounds great - I do really think I know how you feel about being watchful and not relaxed though and I am sure OM knows just how we feel. If it is any consolation to those of you whose dcs are still not ok, when they are feeling better, the worry still lingers. This thing invades your life - so don't worry about sharing your feelings, Katsh, as we understand. I used to cry on the way to work - in private- about the whole situation.
Light at the end of the tunnel - Positive's dd has been into the centre and they were nice!Choc's dd has been doing her online course, Katsh's dd has made it into school, 21again's has beendoing really well back in the school routine and that's only a summary. Wow!
My dd has gone back to school with gusto. She came into the room last night and asked if it was okay if she went out on Friday night to a concert in town. WOW (This is unheard of and she is only 2 months off being 16!)I said a big yes!
She is great and full of life. I am holding my breath but optimistic.
Big hugs everyone

Evening all. I've been reading but not posting - I guess I feel that I am struggling to deal with the situation most of the time and have absolutely no helpful insights or wise words of comfort to offer anyone, so please don't think my absence is because I don't value this support thread. I really do.
21 - your dd sounds really well. That's fantastice. Positive, I'm glad your dd has managed to make it in each day. I suppose reading your post I realised we are really all in the same boat. Dd recovered from her fever and has been into school for 1 hr on Monday, and for 1 hr 20 mins today. We have had 3 days during which she has been reasonably happy for most of the time, and I've felt I've got the pacing about right for her. On the day that she didn't go to school ( by design - just trying 1 hr every other day) I took her on a brief trip to the library. You must all know the feeling of running a marathon every day with this thing, and the way that you can feel so buoyed up by a small success ( 1 hr at school and no major meltdown), and then you see all her friends doing normal stuff and realise that there is an enormous mountain to climb. I have been a bit weepy and hopeless today, but I guess that's just how it will be sometimes. Anyway I don't mean to be mopey - I really just wanted to thank you for your concern and let you know how she is doing. I hope that the rest of the week goes well for everyone.

Lovely, Lovely, Lovely, lovely evening yesterday I think I need a birhtday at least once a month! (but age to stay the same!

DD3 has now done 2 days (one hour each day) at the unit. Yesterday she was grey when she arrived home and was absolutely shattered. She had really enjoyed herself and was really positive about it all. Today she was not even able to speak in the car on the way home because she was so exhausted. She was initially quite negative about today, but I think maybe that was because she was so tired. She is now (5 hours rest later) feeling positive again and is full of ideas for an art piece of coursework. I really don't want to dampen her enthusiasm to learn, to be well and to be positive, but I also am really concerned that it seems to be too much already. I am speaking with the head on Friday and also have a consultant appointment on Monday, so will see what they say.

Hope all is well with you all. - not feeling particularly mrs evilish at the moment, though.

Phew 21again. I have to admit I was holding my breath for you both!!
Positive - am glad you are feeling so er well um positive about the unit and have a lovely birthday!

Choc - so glad your DD is doing so much better.

Dwardle - you are probably up to your ears in stuff for the new school year but do post when you can.

Hi and hugs to everyone else on the thread.
, ,

Well so far so good, I arrived early for pick up and DD was playing hockey - and looked pretty good I must say. She did confess to feeling light headed and hot in the car on the way home but after a drink and snack as soon as she got in she seemed fine. Has done homework and eaten tea and is now watching tv.

This can only be good as she managed to deal with the light headedness without panicking. She could quite conceivably have thought the worst was happening and gone downhill at that stage. I confess to being very watchful and not at all relaxed but hopefully not transferring that on to DD.

Hi Positive and Choc - DD didn't seem too happy this morning but I will be leaving to pick her up shortly so will see then, fingers crossed.

Well done to your DD Choc, the Perrins seems to definitely be helping her .

Happy birthday Positive.
Really dont beat yourself up over the lack of GCSEs. As 21 has said, it's really not the end of the world although we are brainwashed into thinking it is. If she can do a vocational qualification without them that's great. If she does need to do them later on that will also be OK. The most important thing is that she doesnt take on too much too soon. Hope she's Ok with her first proper day.

Hope your DD is less stressed today 21.

My DD is just finishing off her first interactive maths lesson!

Thank you very much for the balloon 21again!

How is your DD today? Has she gone off to school feeling less stressed?

Happy Birthday Positive . Hope you have a lovely time tonight. Not sure if this will work but here goes - www.arenaflowers.com/product_image/large/305-happy_birthday_balloon.jpg
I should have done something more ambitious but it took me rather a long time to master!!

It has been said before that exams are not the be all and end all, I certainly feel like that now although of course we want our DCs to do well. There are other more important things to consider and if your DD can get into childcare without the GCSEs but do other exams later on, then that will be marvellous. Good luck to her and I am sure the unit will be good for her, I wish there were more places like that in the UK for children with health problems.

Hi to all, how is everyone?

Oh schucks put DD's name and I am not supposed to am I????

Hi All,

21 - I hope DD has settled down and can relax and not worry.

Meeting yesterday was good. I really got on with all the staff at the unit and can certainly see they will really care for Olivia and get the best out of her. So refreshing to have this attitude. We have agreed that 1 hour a day is the starting point, although DD has already said that will not be enough because she is well now and is insisting that next Monday she will be going in full time! Yesterday afternoon she went and had a look around and met the staff, was out for 45 minutes max and came home exhausted! First day proper today.
The only down side is that she is not going to be able to do any GCSEs as they are done very intensively with 4 hours English/4 hours maths a week and they do a 2 year course in just 2 terms and really need 100% attendance to get that. As DD is dyslexic and really struggles anyway, we feel this is going to be way too much stress for her. So she will be leaving school next year with no qualifications, which is a bit hard to get my head around, but she wants to go and do childcare and we have been told that she will be able to do that and get some qualifications through that course.
I think the next few weeks will tell us really where she is medically and may well set the scene for the coming winter.

Anyway, my birthday today and DDDDDDH has booked a table at the poshest restaurant in town (ok, not too many to choose from here, but very good!) so off out tonight.

Hope school is going well for you all. dd's and you working there!
Dwardle, say Hi to Jan for me and thank her for putting me on to you lot of crazy lovely ladies!!

Hi all - first day over and all was fine until DD discovered last night that she has lost her year 9 maths file and book. We managed to make up a new one from her sister's old blocks but she has not been herself since, it's as if she is dwelling on this one little incident. I am being very positive and upbeat but I can see where the danger lies here, she is even miserable this morning.

How are everyone else's DDs? Coping I hope.

Thanks for the explaination. I do think it is somewhere probably to be avoided at all costs, by the sound of it!!!!

Positive - when you go to this mecca of teenage shopping (American and highly overpriced) you are met at the door by a 'greeter'. Usually a 17-21 year old muscular manboy stripped to the waist. The teenage girls then have their picture taken with him if they so wish!! The whole shop is set up as a night club with music blaring and is very dark. However trendy a parent you thought you were it is designed to bring you back to reality with a bump as you head for the nearest couch saying' it's noisy in here' and 'can we take this to the light so I can see what colour it is'!!! Horrible but the teenage girls love it even though they can't afford to buy anything in there!!!

Have a successful first week everyone and good luck for the A level, Choc.

Thanks for the abercrombie info. I had actually been really nosey and typed it into google, but was confused by the clothes site, which didnot seem to mention anything about topless men!! It was the topless male I was interested in!!!

has seh been in contact with any oungsters with slapped cheek syndrome( human parvo virus)

Choc and Positive google Abercrombie and Fitch for the website. There is one shop in the UK, Optimistic and I were discussing it at our meet up, my DD was keen to go and Optimistic knew all about it .

Positive - I am so glad you have that weight off your shoulders now, and as you say, the staff at the unit are totally on your side and will want to do what is best for DD. She will quickly realise what she is capable of doing and who knows, her positive outlook may well help her over this. Good luck this week, and to everyone else for the new term.

I must be old too, Choc. What is Abercrombie?

Hope the schooling is going ok.
I have a meeting tomorrow morning at 10 to discuss what is going to happen this year. DD is realy excited about going back. She says she does not want to faff around with the one hour a day. She wants to be going in full time by next Monday. She is very much an all or nothing person, and it is not easy to get her to see that this may not be best for her.
She will be going to the specialist unit and it is nice to be having a meeting where i know I wont have to be fighting for her, or against people who are totally unreasonable. I get on well with the head and really trust her, which is a very new situation for me to be in. It's quite nice!!

Hope you are all having a good weekend.

Hi All - hope your weekend is going well. DD is starting her online maths A level this week and is looking forward to it. Is just coming out of her bad post treatment day, with hopefully a good few days ahead.
Erica - thanks for sharing your story. I agree totally that you will be able to make up what you havent had a chance to do education wise. I think we mums can all get a bit fixated on the importance of education. The truth is, I think, that the most important form of education is life. When is baby due and how are you finding pregnancy with ME?
21- I must be showing my age - what is abercrombie?
Katsh - hope your DD is OK and has picked up after her first day at school.
Positive - hope school is going OK

21again - glad you enjoyed Abercrombie . Hope DD has a very successful week next week. My DD has had 2 successful days at school and has had a busy weekend so fingers crossed.

Dwardle - hope you and your DD have had a good start.

Positive - here's hoping for a better week next week.

Everyone else on the thread - have a lovely weekend and a positive week next week.

No!! That should read DD1 at the bbq. I am really not concentrating today.

Didn't check my post above at time of writing and it shows!!

Optimistic - we went to London yesterday with DH who had a meeting. We finally found Abercrombie!! DD2 was in her element, DD1 very bemused, DH stood it for about 5 mins and had to walk out, I'm still giggling to myself about it today . Loved the Mums who were waiting patiently outside for DCs but went in for a photo with the topless male just inside the front door, all in all quite an experience .

Hi to everyone, hope all is well. Back to school Monday although DD2 is in tonight for a bbq with other 6th formers, lots of new ones in that year.

Katsh hope your DD is OK now, how was she yesterday did she go in again? Your friend is great and what a relief for you to have someone like thatto help .

ErikaMaye thanks for posting, it really is good to get your perspective, and you have come such a long way. Good luck with the pregnance.

Positive Hmm... That's a tricky one I tend to act like you DD in all honesty - sometimes I'm incredably difficult to live with, and do feel sorry for my family! I think just being there when I do want to talk and not pressuring me when I don't is the most important thing. Making me feel "normal", especially when I'm out in my wheelchair and getting stared at. Just genreally being my mum. She doesn't make me feel bad for not managing stuff one day when I can do it on others. Reminding me I need to pace myself when I don't want to!!! Constantly reminding me its not the end of the world As much as sometimes I want to murder my parents - show me a teenager who doesn't - I wouldn't be as "okay" as I am now. In all seriousness, without their support, dealing with my ME, my BPD, and now my pregnancy, I really don't know if I'd be here. For what its worth, it sounds like you're doing a fab job I can't imagine how distressing it must be to watch your child struggle on a daily basis. I admire you all.

Re Exercise - my specialist recommended a Wii Fit Its been FAB. Because it clocks the minutes you do as well, you can keep track of what you can manage before you're tired, but also, having the yoga is brilliant. The balance exercises have helped no end as well Have also found aqua aerobics incredably helpful, if that's of any use to anyone. The water takes the weight off everything (a God-send in pregnancy!!) and eases the pain because movements are so much smoother.

hello - been reading posts, but not managed to write. Sorry positive that you've had a rough week - hope things are looking up again. dd made it to 1 hr of school today. She was v. worried about starting her new school, and looked terrible this morning, and was very poorly. We decided to still go, and she enjoyed her time but came out looking grey, not talking and shaking. Straight home to bed and soon had temp of 39.5. She's better tonight in that her fever has gone, so I'm hoping that's why she was so unwell, and that it wasn't that school knocked her for six. Definitely feeling a bit anxious mum, but a lovely friend turned up at 6pm with meals for us and stayed for 2 hrs to help get 3 to bed, and is returning tomorrow afternoon after work so that I can take my oldest out to her ballet lesson without having to bring dd2 out too. Sometimes people really are lovely aren't they ... Hope the week ends well for everyone.

Just checking in.

Great to hear everyone is feeling much better!

Erika - good luck with the baby. I am absolutely certain that in dealing with CFS/ME our children will have learned important life skills and be much more mature in many ways than their peers.
You certainly sound that way.

twentyoneagain - no, no more symptoms since! I suppose I do get a bit more tired than most when I exert myself or when I'm stressed/busy, and I need plenty of sleep, but it's just a normal tired, not ME type of tired, and I'm just careful not to over do it. I've run Race for Life and can swin as many lengths as I have time for, so definitely no lasting evidence of ME at all.

As I say, I'm not sure exactly what it was that helped me, but after 2 years of sleeping 16-22 hours a day and being a virtual zombie during any waking hours, I felt suddenly and completely better after stopping the tablets.

Maybe I was lucky, maybe it was the treatment, I don't know. I do hope all the sufferers here recover too, and hope in the meantime, you can all keep your lives going so that you can get back on track again once you are better.

Positive - look how your DD is recovering much more quickly . She will have to be careful but this is so much better than before thank goodness. It is such a relief for you all especially when you think back to how bad she was. Glad you are feeling more like your old self .

Erica and Roomfor2 - thanks for posting about your experiences, every little bit of information is a help. Roomfor2 have you ever had any symptoms since or have they cleared completely? Erica what a horrendous time you have had, but I am glad things are looking up for you now. Good luck with the baby and let us know how you are.

Hi to everyone else how are you all?

Dwardle, I was feeling better, til I read your post. Were you supposed to be depressing me or cheering me????? only kidding. I am very glad I have met you all!

Choc - the Psychiatrist at CAMHS was willing to prescribe mild anti deps for dd but after evaluation decided she didn't need them but made it v clear that if dd or I felt situation changed,then we should go straight back.Re LP, nearest link I can make is with CBT - which IS a fully recognised treatment for cfs.
So glad to hear yr dd is having many more good days.
Good to hear from you Erika and Roomfor2, as well as from everyone else. Your story sounds shocking, Erika - glad you found someone who believed you. Roomfor2 - my dd's docs really encouraged the exercise - even going in a jacuzzi was nice for her - so really see your point. Now, she is doing more exercise!
As you say, I don't think the cfs/me experience is all bad - you certainly learn what and who are important and my dd has matured so much and learned strategies to cope with stuff.I have learned to step back and be slightly less controlling!
Positive - it may seem at the moment that your experience and your dd's is all bad - but just think - you met us! Are you all having a better day?

Hi Erika, So sorry to hear all your problems with the medical staff. That must have been so very dificult for you.
CAn I ask you a question? What was the best thing your mum could/did do for you? I feel so helpless just sat here watching DD struggle and I always think I am doing the wrong thing. Teenage years are so hard anyway that this all seems to just make everything harder in some ways. DD really swings from being calm and receptive to being totally frustrated and taking everything out on me. I do really try to stay calm with her as I understand that she is so frustrated with it all.

DD seems more lively again today and has just popped out to see a friend just for a short while. She is very aware that she has to pace herself again and she does seem to accept the limitations better than i thought she would.

Thanks for all the support ove rthe past few crap days. I am feeling stronger now and more able to cope again. Mrs Evil is back!!!!

Chocaholic can totally sympathise there. I won a scholorship for sixth form after being at quite a rough state school, so lost any friends I had from there when college started - gotta love 16 year old logic - and then when I got ill I lost all but two of my friends from sixth form. Its such an isolating condition. That being said, I trully believe that everything happens for a reason. If I didn't have ME, I doubt that I would have met my DP, and so wouldn't be expecting my son - and although it gets me down at times, and scares the hell out of me wondering how I'm going to manage, especially with my ME and BPD, I wouldn't change it for the world.

I do often wish that I could have had a "normal" time, but then again, the things I have done and acheieved in the past two years are probably more meaningful because of when they were acheieved. I intend to go to uni, when I'm well enough, and now when my son is old enough. An education can be gained at any time.

In a lot of ways I was rather lucky. I have to use a walking stick at all times, and for longer journeys a wheelchair, although I do avoid it - I should use it more than I do! There was only a little while when I was so ill I couldn't get out of bed. And as much as the reaction I gained from the medical profession at first WAS terrible, if I hadn't have had the motivation of "I need to prove them wrong", I think I would have wollowed in what I was going through. The first doctor I saw at the hospital kept me in until a physcatrist, physcologist and social worker could see me - as soon as she herd the words "anti-depressents" I was instantly classified as a head case, if you will. She forced me to "walk" without my stick in a room full of people. I've never been more humiliated; I remember that day very clearly.

It actually took at physcatrist in the physc. unit who had had ME to pull me to one side and say he believed me. My GP wouldn't do the referal to see the ME specialist because I was under a physc. team - that's a whole 'nother story, don't get me started! - so I was so relieved when this guy said he would. Being told, time and time again, that I was imagining it or lying about how I was feeling had made me begin to doubt myself, and for a while I trully thought I was loosing my mind. I still do wonder occassionally; the nagging doubts slip in when people ask what is wrong with me / why I have a stick, and they just give you that look that clearly states "You should be locked up somewhere..". Attitudes are terrible, and I really want to change them.

Anyway - rant over!

I hope your DD enjoys her outing

Hello Erika - as Optimistic says, thanks for posting. My DD isnt really a child anymore, probably only slightly younger than you by the sound of things, she will be 18 since November. Her story is different to yours but it sounds as if you have had ME for a similar sort of time. She is exciting about being 18 and an "adult" but says she doesnt really know who she is and she still feels 15, because she's spent almost all the past 2 years at home with us which clearly isnt how it's supposed to be. Her school friends let her down and in some ways she's much older than her years and in others much younger. Would love to hear more of your story.
Hello All - hope you all have a good day. Hoping to have a little outing with DD later.

Thanks so much for posting, erika!
So sorry you've had such a hard time. Everyone on here knoiws how difficult CFS/ME is. I know our DC will appreciate your support. Have a read through of the posts. I know it's 25 pages long but there's some really useful stuff on here!
xx

I'm 18, and have had ME/CFS for the best part of two years now. Its been incredably difficult - I was put in a physc. unit for six months because I was accused of lying, and then told it was all physcosematic. I was lucky to finally get a doctor who took me seriously.

If there is any way I can be of assistance to anyone's child, am more than happy to give out my email address. I was put in touch with a fellow ME sufferer through a mental health project I took part in, and found having someone who understood what I was going through on a daily basis incredably helpful; I didn't feel so lonely.

Best of wishes to you all. x

Positive - sorry things are so tough for you. I know how you feel, every time we have a bad few days, I get scared DD is going downhill. Unfortunately, it looks as if your DD has been booming and busting. I know this is so hard, all any of us want, as I know I've said before is for our children to have normal lives and do what other kids do. I don't know much about the Lightening Technique, other than that I dont understand it because it seems to go against everything else. However, I know that some of the DDs on this thread have done well through it and I have also read a couple of blogs from late teens who have recovered totally. I do think that you need to have agreement from your DD if you decide to go down this route - it doesnt seem to me (in my ignorance) that you can do this without her being totally on board.
Roomfor2 - many GPS are reluctant to prescribe antids for under 18s. Certainly neither our paed or GP would and DD is I think the eldest child on this thread.
Generally - DD is doing well on Perrins. We seem to have fallen into a pattern of 1 bad day and 1 not so good day following Perrins, followed by 4.5 pretty good days until the lady comes again. She is definitely doing more than she was before. Is trying to walk outside the house more, made it to the corner and then up the next road yesterday - probably the furthest she's walked outside for almost 2 years. Made some scones today. Good luck to all returning to school.

I had ME for 2 years and nothing herbal or foody helped me.

I don't actually know what helped me to come out of it in the end, except that I had been put on mild antidepressants by my doctor and when I decided to come off them after about 6 months, the ME left me as the drugs left my system. A few weeks later, I was totally recovered. It was like a neurological switch had been flicked in my brain.

Now, I realise that it may be a bit contraversial, but please remember that there may be a neurological component to ME and that is what antideps target - they are not mind altering drugs, they are just drugs that target the nervous system. They are also used to treat neurological pain in people with diabetes, so they are not evil.

Might be worth asking your GP about?

Anyway, my other advice is to try to - on good days - encourage her to exercise if she can, and whatever you do, don't let her go into a wheelchair. She needs to keep moving her muscles, otherwise once the ME leaves her, she will still have no strength or energy as her muscles will have wasted.

I used to go to the swimming pool with my mom, and 1 length was a real achievement at first, but I think it really helped me to pull myself out of it.

I feel for you and your DD and really hope she get's better soon.

Positive - I do know how you feel and I think the way you describe it is absolutely spot on. Try not to think about the escalator too much, it may not go that far this time. Try to keep doing positive things about the CFS as being proactive does allay the feelings of helplessness.

Hope you feel better tomorrow.

<Am enjoying the banter on the other thread!!>

Thanks for the support. We have managed a short trip out to the garden centre for a yummy cake and coffee this afternoon, just to try and cheer us all up a bit. Lovely to get out again. Also stopped at a shop to buy some clothes for DD to wear when she does go back to school. Absolutely nothing fits from last year, so whole new wardrobe needed. She is a lot happier now, but tired.

I was trying to explain to a very good friend how I felt and I came up with the fact that when DD was first ill it was as if we were travelling on a downward escalator. When we went down a step we always believed that that would be the bottom, then another would lurk. This time I feel as if we know how far the staircase goes down and we are travelling down there again and all out of our control.

I think this is probably the first time that I have felt so rubbish about all this and it is so out of character for me. I don't like feeling like this about the situation, so am determined to sort myself out so that I can be the support that DD needs.

Thanks once again. sorry can't do my grin grin grin at the moment, but not so sad, sad, sad as yesterday either.

<<wave to OM, just seen you on another thread!! >>

Positive - so sorry you are feeling so bad . Could my DD help by getting in email touch with your DD? I'm sure she wouldn't mind. Also - have you thought about one of the residential courses. Your DD may well be frosty but you could still do all the groundwork/ get the book/ load up the video clips etc etc so at least you would feel you were doing something. Can I ask you why she is so 'frosty' about LP? You may just have to keep working on her. She may well come round if she doesn't get better quickly by herself. Atm she probably feels she will be better soon and therefore doesn't need the help.

Take care of yourself, Positive. Things will get better for your DD and you. It's just sh** when she's been so well and you've been used to a more normal life.

Dwardle/21again - hi

Positive - I feel so bad for you all and I know exactly how you feel, it was the same for me whenever DD relapsed. I used to allow myself to think that she was better in between each relapse (why wouldn't you?), only to feel completely knocked sideways by it all again. After a while I think I got more used to it but it was always hard to deal with.

I understand the difficulties regarding LP living where you do but, as Dwardle says, look on the map on the LP website and you may well come up with something close.

Wasn't it you who told us about your DD reacting well to the faith healer? Forgive me if I am wrong, I've tried but can't find the page right now. Maybe if that is the case then you could contact that person again for help.

None of us can predict how this illness will pan out, it is as individual as we all are, but your DD will get better. You have seen the light at the end of the tunnel but haven't reached it yet. Try to stay strong for DD and I am sending you some very heartfelt (((hugs))).

I hope you are not suffering too much from lack of sleep, it is awful laying awake worrying and things always seem so much worse at night, (I know, I've been there the last two nights but that's a story for another day).

Thinking of you today and will be back to check for any posts from you later on, take care..

one thought - dd's course was only 10am-2pm. Any help?

Thanks dwardle. I have looked at website. No practitioners here. There is one that would be ok if we stayed overnight in a B&B or hotel or something. But this adds a lot of other problems with 4 other DCs to consider (+ work, but that could be sorted)

My heads gone into a bit of a spin at the moment and I am back to having sleepless nights worrying about her again. We had a good few weeks and I know we will again.
Thanks again. I am pleased your DD has done so well and is now being a normal teenager!!

Am gutted for you.
Wonder - could our dds help at all? Mine is away just now but am sure there may be a way of getting them in touch. Could Optimistic help here?
We all know how you feel and have been there with our dcs. I still do think LP is worth looking at - the website has a practitioner finder.
Anyone got any other ideas to help?

Glad everyone is doing so well. Interesting about the body issue. DD was a competitive ?spelling? swimmer and was really broad and muscley ?spelling again???? She is now scrawny looking very thin. No clothes fit her, so a whole new wardrobe appears to be needed.

Its crap, crap, crap here!! DD is really struggling. She has not beeen able to go out for a week again now. She is struggling to walk at times, but is so determined not to go back to the crawling and having to be lifted. She would rather not eat than be fed again as she was 4 months ago. It is so much harder the second time around, as I know how bad it can get. I know we will cope if it gets as bad as it was again, but I really don't want to have to. When your DD's relapsed, did they go back to their worst, or did they not? I have mentioned LP, but a very frosty reception from DD. I know that she needs to be 100% convinced, or there is no point. I think the location here could be an issue, how do I find out if there is a practitioner here? We are quite limited by water issues if you get me! Come and help us smile again, please.

Hi everyone
Good to hear your news, 21again. Yes - people do get better from cfs and your dd sounds like she is very well placed to have a great start to the new term. I am sure she will be fine and will go from strength to strength. It is interesting to hear what you say about her body shape changing - does she do any exercise now? My dd is supposed to be coming to the gym with me but....!One of the downsides of feeling better is that she is becoming more teenagerish! Ah well.
How is everyone?

Hi all - DH has gone to pick up DD1 and friends from Reading. They had an "awsome" time (seems to be the in word now)!! Meanwhile I have the computer to myself for a while so can read at my leisure.

DD2 goes back to school on 7th so a few more days to make the most of. I understand there is a sleeepover planned at one of her friends' houses but haven't had the details yet. She is well and looks fit and healthy although she hasn't done much physical exercise this Summer. I feel she should be able to cope, she is a different girl to when the CFS hit her. She was a very good cross country runner and consequently looked like a stick insect with not an ounce of fat on her body. Having obviously given up the running she has filled out and looks a far better shape and much stronger. Her rate of growth has slowed down and I think that has helped her to build strength also.

As far as she is concerned she is better although who knows how many niggling doubts there are lurking. I wish she had the tools that LP teaches so that she could deal with any symptoms that may rear their ugly heads, but, as Optimistic rightly pointed out, people do get better without LP and so why shouldn't she? I find I am quite looking forward to her returning to school simply so we can find out how she will be.

Dwardle - excellent news about your DD and her work experience, she is doing so well and the longer it goes on the better she is coping .

Positive and Katsh how are your DDs and Choc is DD still improving?

Hi Everyone - another grey and damp Bank Holiday here!!
dd is off to my brother's this eve - she is staying there to do her work experience that she missed back in May. Then off to school next week. She has been doing work too for last few days.Yes, OM, I am anxious but am trying to hide it from dd!
Congrats on the great results for your ds- wwhat a star!
Oh, Positive, I do feel for you and yr dd. Totally agree with your comment to Katsh re school - also speaking as a teacher, Katsh - just let her go at her own pace. Same applies to your dd, positive Your dd is just doing what my dd did pre LP - going on well, then a crash. I suspect this is what dds of others have been like too. 21again - how is yr dd and how are you feeling about the start of the new term?
The one thing about LP is that I feel dd now has strategies that she can use. We will see.
How is yr dd, choc? Can you see progress from the Perrins now?
Take care, everyone and keep posting.

Hi all.Just got back from suffolk last night so no time to post. My DS got 8 A* and 2 A. Also A,A and D(whoops) in AS maths. Will retake the D. We're v. proud of him. Well done to all the girls. My DS will be very jealous that your DD is at Reading, 21again, as he is wtching enviously on TV as I type.
Am so sorry about the relapse, Positive. At the risk of sounding like a broken record will you not consider LP?????
Dwardle - I am beginning to trust that DD is recovered 6 months on from LP. I am sure you are wondering how your DD will get on for the new term. All I would say is she is bound to get ill at some point when she is around bugs and stuff but you mustn't panic and presume that she won't recover. I also feel a tiny bit anxious about DD starting the new year ...
Love to everyone else on the thread.
Enjoy the remnants of the hols.
xx

Positive - I am so sad to hear about DD's relapse, we never quite know what the triggers are. It's as if the stresses that DDs have to face are being stored somewhere but not dealt with, then something apparantly minor can come along and tip the balance and the body reacts in the way it has become accustomed to, i.e relapse. That certainly seems to fit the bill as far as our DD was concerned.

The unit sounds great and DD doing one hour per day hopefully will be something she can cope with. This can then be increased by little amounts once she has proven she can deal with it and shouldn't put too much pressure on her. I hope she picks up over the next week, just give her lots of TLC and tell her we are thinking of her . She sounds very determined but don't let her push herself too much.

Hi Katsh, good to hear from you. I hope DD has survived the travel home better and can have a restful few days before school starts. Just a tip, not sure if the others would agree, but I would say, don't expect too much from attendance at school. It really doesn't matter if your dd doesn't make it a lot. It is better to get her health sorted than to worry about attendance figures. Education can be sorted later. I know I am probably being very hypocritical as I spent the most of last year worrying about DDs lack of education.

Big busts here!!
DD has crashed big time and didn't even do too much to explain it. A bit concerned that this could be how we go for a while. She is absolutely adamant that she is going to be going to the education unit, but i am worried about her pushing herself like she did last year to try and prove that there is really nothing wrong with her. Hey, Ho!! Another frustration. I have to admit i feel a bit resigned to it all a bit more now and am not fighting it all.

Enough waffle from me. Hope you are all doing ok and have had good holidays. We don't return to school til 7th here, so one more week of lie-ins and stress-free mornings!

Katsh - good to hear from you and I am sorry DD had a rough time on holiday, but glad she picked up after a few days. It is difficult to deal with and sad to watch them missing out on so much - we have all been there. Do you have a pacing programme recommended for DD, and are you trying any alternative therapies at the moment? On the cleaning front - it's a pain to arrive home from a break and have to start cleaning like that!!! Hope you are finished now .

hello all Just caught up on your news. Well done on the great results in GCSE's and the increased energy of some of the girls. Great about the specialist unit positive. We had a good time away , although as you'll all understand , a bit sad too, as it certainly wasn't like a "normal" holiday. I guess this is our normal now. Travel etc was too much for dd so we had a big bust day on day 3, however after a few days where she didn't leave our tent, or pitch things got a bit better. It just meant that we did a lot with me at the tent with dd whilst dh took the others away to swim/ beach/ bike ride etc. Hard, but still good to have a change of scene. Now trying to clean house that was re-wired while we were away, and get my head around how this term will work . Gotta go and finish the cleaning ... I certainly know how to have fun on a Saturday night

Just googled the Rosedale clinic, it is an interesting read and obviously one of many alternative clinics available. I guess different herbs will be appropriate for different people if they chose that route. I think we all take the view here that certainly alternative therapies have a place in the healing process for CFS and obviously for lots of other illnesses.

Thanks for the information Pushkar, it helps to be armed with as much as possible .

Hi to everyone - not long before most of our DCs are back at school, good luck to them all.

have you thought of anti virals such as ldm1oo oreganol oil olive lead extract raw garlic engystol heel or a homeopath
such as chris boardman at the rosedale clinic he is also i think in oxford part of the month he had healed bahavioural children to pms a mind of information and has been practising since 1979..

Positive - that is wonderful - well done to your dd2
Brilliant news about dd3's place at the unit too. Try not to worry too much - I think we have all learned that we cannot control cfs or our dcs!!!She will go when she can and that will be a start.
Well done to yr dd too - Choc - that is a wonderful achievement.
DD got results for 4 modules - 3 science and a maths. She got 2 bs and 2 cs so am v pleased for her as she hardly went to any lessons. She was esp happy as some of her friends got same grades as she did so she felt one of the gang! She has put all her work in order today ready to get some coursework done!
OM - when do you think you really accepted your dd was better?
Hope your other dd is starting to recover, positive.
I did feel for you about the carpark. Just remember that some people are vile. I think LP would suggest that you choose to ignore them!!!! Is dd okay about it all now? How is she doing this week?

Fantastic results Choc and Positive, and thoroughly well deserved . Positive that is such good news about DD3, hopefully this will take some of the stress away and she will start to feel better again.

DD1's results were great - 5 A*s and 5 As, and to celebrate, she and three friends are at the Reading Festival this week end (an early birthday present from us). We are very proud of her, she has worked hard .

well done to your DD2 Positive and brilliant news about the unit for DD3. You are very fortunate to have a facility like that I think. My DD got an A in the GCSE she took. She used the NEC for materials but was basically on her own with a bit of help from DH where necessary so we are well pleased.

Hope you all had good news today. Is everyone being shy and not wanting to say what they have got? Very proud here. DD2 got 8 A & A*, 3 Bs, and 2 Cs.
Also had good news about DD3's education. The head of the specialist unit has said that she will sort out a plan for her and she will be able to go to the unit. We have a meeting to sort it all out on the 7th and she will start 1 hour a day on the 8th. All looking good!!
I am slightly nervous about her return and although trying to be positive I am also wondering how she will do and how long she may last.

Hope you have all had good results and good days!

Hi all, going in for results soon, it really is nerve racking isn't it? DDs have been with grandparents this week so we will meet them at the school in a while. Good luck to all our DCs they have worked hard and deserve success .

Can't stop now will be back on later, love to everyone.

Hi dwardle. Good luck with results!

Swine flu turned into chest infection for DD3 and she still suffering. I have also had the panic moments of thinking that it has been going on for so long that it could lapse into CFS. I know this is irrational, but this was just how DD3 started. But no, she will be better soon. Luckily, I think she must have been at the contagious stage whne she was away as no-one else here has had anything, but out of the 130 people she was away with a HUGE percentage have been ill!!! or sorry that was cruel to grin, but just self preservation!

Hi Everyone.
Just read through all the posts - dd is up ready to go into school to get module results for things she learned/ revised at home in the main. I think that passes will really boost her confidence so am really nervous for her! Try not to worry about yr dd too much
What happened about swine flu? Feel like I have been away for ever!
Will be back later

Hi OM, waiting for GCSE results for DD2 here too.I am up and pacing the room, she is asleep and says she will go when she can be bothered to get out of bed! I'd be knocking on the school door to be allowed in a first light! It's either going to be a good day today, or totally rubbish. Today determines what she does next year. A lot rides on today! gulp, gulp, gulp!

Hugs to all.

Hi all - just 'popped' home overnight to pick up DS1 GCSE results tomorrow I;m more nervous than he is!

21again - thank you for your lovely comments regarding my DD - we really enjoyed meeting you too!

Positive - so sorry DD is feeling so bad and that you were put in such a horrible position. You know what my advice would be don't you????

Calgal - welcome to mumsnet. I'm so sorry you have CFS/ME and I don't envy your situation one little bit.
I am going to recommend that you do the Lightning Process ( Google: Phil Parker + Lightning Process). Two of the DDs on this thread have done it with excellent results. Don't be put off by the 'cagey' feel to the website or the 'evangelical' type videos. I do also have a step brother who has ad CFS/ME for 25 years. He is doing LP in Australia in Sept on the back of my DDs results. I thought he was funtioning perfectly well but evidently not. I will let you know how he does. Also, when my DD did LP the others on the course were adults. We regularly see one of them who is also now completely well. 2 of the 3 others are better and one is not.
It is well worth looking into and I cannot recommend it enough! HTH

Hi to everyone else on the thread!!

Hi Calgal, sorry to hear about your diagnosis of CFS/ME. It must be really hard having to keep up with a DC and trying to hold down a job too. I hope you DH learns more about it and can understand more about how you feel. A least with teenagers having it they are able to not have any responsibilities to have to worry about. A whole new ball game I guess.

Huge sigh of relief here. Mrs CBT has been and we have survived! Not too much of a told you so. She was very encouraging about how far DD has come and cleverly reminded us of how ill DD was just a few months ago. She was also positive about her schooling starting in a few weeks. She is going to have a word with the headteacher of the specialist unit tomorrow, so I am hoping we will eventually know more about where she may be starting. She has suggested that DD starts with an hour a day. DD very excited and hopeful. I will have my fingers crossed!!!

Hope you are all doing well still. Interested about perrins! I am glad your DD is feeling better again after the "stuckness".

Love to everyone,

Choc - thanks for that, the Perrins site certainly makes for interesting reading. I am so pleased your DD is improving, it is a long uphill climb but she is getting there. Keep us updated on her progress, it is good to know about others' improvements .

Calgal - This is so difficult for you. CFS is a dreadful and bewildering illness and for you to have to deal with a family and a job while suffering is simply too much. Choc is right that pushing yourself can lead to a worsening of your symptoms, but I can see that you are in an impossible situation.

Read through this thread when you get time and feel up to it, we are Mums with children suffering and we have learned a lot about the illness. It will help if you persuade yor DH to find out what he can about CFS, he needs to understand. There are some good websites with information on pacing yourself and you could perhaps get your GP to refer you to talk to a specialist, that way you will understand a lot more and perhaps your DH can accompany you so that he can ask any questions that he will undoubtedly have.

I do hope things get better for you, if you look at the beginning of this thread there are some adults who did have CFS and some of them may be able to advise you more. Take care...

21 - just realised I hadnt answered your question about perrins. I dont think perrins itself claims to treat anything else. He is an osteopath who discovered by chance that certain techniques were helping patients who suffered with ME type symptoms and it went from there. There is a website and a book if your friend wants to delve further. DD has definitely improved, no doubt about it. Unfortunately, as he says in the book, as you improve, in someways it gets harder because you can see more of the "mountain" ahead that you still have to climb. That sounds negative and isnt really meant to be. It just is scary when you look ahead and wonder how on earth she will ever get to the point of being able to lead a normal life.

Calgal - the danger with pushing yourself so hard and "not giving in" is that it will make you worse in the end. That is what happened with my DD and some of the others on this thread. Because of the requirements of education and the fact that we are all brought up these days to think of education as top priority when it can, in fact, be made up in the future, I pushed my DD to attend school when she shouldnt have gone. Eventually, she could take no more and ended up bed bound for 7 months and has now only just started going out for very short occasional outings. Although you are an adult with family responsibilities, your situation is not dissimilar. You definitely need to get your husband to understand your health issues - show him the stuff you are reading etc - here is a good explanation of the energy implications although it wasnt written by someone with ME http://www.fms-help.com/spoons.htm. What is your medical support like, have they given any guidance to you? I dont want to tell you what you should or shouldnt do, but I am concerned that you are doing too much and feel you really need to ease up. Take care.

Thanks for your reply chocaholic73 - I like the idea of the aptly named Foggy Friends - I have just noticed that there are other post topics that are relevant - the fogginess meant that I had missed that. Trying to get to grips with the idea of pacing. Still working so no rest when kids at school. Too pig headed to give in until I'm on my knees (although I do know that this is the worst thing to do, I can't seem to do the sensible thing until pushed to the limit) though I know that I will have to make changes as I'm not managing.
Fortunatley I have fantastic boss and a very supportive family. Husband does not really understand what this is and expects to be thanked for doing tasks for me (like anyone ever thanks us!)He cant understand why I can manage to be at the computer and not manage the housework. Though I cant complain this week as he is sending me to a spa for the weekend.

Hi Calgal - couldnt let your post go unanswered. I really feel for you, it must be tricky. Yes, the regular posters on this thread are all mums of children/young people with ME. I think I have come across a couple of Mumsnet posters with ME but it was a while back. You would probably have more luck trying to locate them on the General Health Board. However, there are various ME type websites with a wealth of info and support - the ME Association is the one that springs to my mind ..oh and Action for ME. There is also a very good forum called "Foggy Friends". I can imagine that pacing with a young child must be a complete nightmare. I can only suggest things like resting when she is at school/nursery rather than doing things, not feeling guilty about sometimes "parking" her in front of a dvd. Do you have a partner? If so it is going to be hugely important for them to take a lot of the responsibility regarding things around the house getting done. Do you have a supportive family/friends? There may also be support available from social services direct payments. I do know from my experience with my DD, that pacing really does work but you do have to really limit your activities and be very clear about what constitutes high energy activities. I'll look out for your reply.

First message for me on Mums net. Friend suggested I try it to find like minded people who have experience of Chronic Fatigue Symdrome.
Recently diagnosed withCFS after 18 months of feeling hellish and now with a diagnosis am desperate for some route to follow to improve things. From reading the comments I think most posts are from Mums who have children with CFS/ME. Any advice on what to do?
Are there any Mums out there who have CFS? Any tips on how to pace yourself with a 4 and 5 year old to look after?

Choc is right Positive, it is so easy for them to overdo it at times especially when they feel good, and the car park incident obviously set her back a bit. I am sure the CBT lady will understand what it has been like for you all, and will help DD to get over it .

Choc the Perrins really does seem to be helping your DD, it is great to read that she is feeling so much better. What other illnesses does Perrins claim to help? I ask because I know someone who has recently been struck down very suddenly with rheumatoid arthritis, and she is really struggling to do anything at the moment. I know there will be drugs etc to try, but she herself has mentioned "toxins getting stuck".

Hi to everyone else, hope you are all ok amd DCs staying well.

Don't beat yourself up over it Positive. All any of us want is for our DCs to be able to live normal lives. Your DD had some good times but it does look as if she pushed herself a little too far, which is so easily done. I'm sure Mrs CBT won't be harsh.

My DD had a bad week last week, didnt pick up at much after the Perrins treatment. However, after having her treatment this week, literally within minutes of the lady going, she was much brighter and she has felt much better ever since. It seems as if some toxins had got "stuck" and were cleared by the treatment.

Hope you all have a good week.

Hi all,I hope the meet up went well.

Thanks for all the sanity talks! We have survived!! Dd does seem reluctant to go out, but not too sure why at the moment. If it continues I will broach the subject with her. Not sure if it is because she is struggling so much again, or because she does not want to be accused of not being ill again. A bit softly softly at the moment as she is a bit fragile. Not very happy about the short-lived recovery, that she thought was forever!

DD struggling again here. Oh Mrs CBT !!!! Not looking forward to her visit on Wednesday. She would have every right to say "I told you so" I will hang my head in shame!

Family picnic birhtday party today for my 18 year old Neice. Made me aware of how much I miss 18 year old DD . DD 3 came just for about 30 mins. She sat in the heat of the sun with a blanket wrapped around her 'cos she was cold! Home to sleep and still knackered now! We are all tingling from sunburn!

Hope you ahve all managed to enjoy the sunshine. And I hiope all DD's are still doing well and enjoying "normal" teenage life.

{grin]

Positive that is dreadful and I am so angry for you. Some people simply do not think and have no idea of the hurt and upset they cause, or simply do not care. The woman was stupid and ignorant but that does not excuse what she said. I hope you and DD are feeling better about everything now, and like you I would only have thought of a suitable retort after the event.

Be sure DD takes things easy today and think about pacing her activities. Perhaps, from a positive point of view, you should tell DD that she does look well and that that is a good thing as she is on the road to recovery and so much better than she used to be.

I did have a good meet up with Optimistic and her DD who is gorgeous and looks fit, healthy and full of life. My two DDs did some shopping and joined us for a chat and the three of us certainly enjoyed it. Optimistic is away for another week so don't know if we will hear from her for a while. She certainly has been enjoying some good weather.

Hope you and DD are OK today Positive.

That happened with a friend who has lupus, and has good days and bad days, but is my age and has a disabled badge.

The offending creature got a blow by blow account of everything my friend had wrong with her, how long it had been going on for, and all the medication she takes, not to mention the pain she was in. The old bag was cringing by the time she'd finished!

I do feel desperately for your poor daughter, and I reckon I would have done the same as you.

oh Positive you poor thing and poor DD as well. It is so easy to think of the exact appropriate cutting reply after the event, I am seething for both of you, what an ignorant woman! I think it is totally understandable for your DD to be reluctant to go in the wheelchair, now she can manage better, mine is the same. Sorry she hasnt been so good, unfortunately I think it gets harder when they improve in a way, as it is so tempting to do just a bit too much. Anyway DD has recovered a bit now and you too. Have a good weekend.

Hope the meet-up was good. I am sure you had plenty to talk about.

I am in desperate need of a rant to someone who can unruffle my feathers and understand my anger!!
DD has been becoming increasingly more housebound again over the past couple of weeks - yes cbt woman you were right!!! Today I decided that we needed to get some fresh air and so opted for a trip to the garden centre as we can park right outside in the disabled bays (we have a blue badge for DD). DD is refusing to get into the wheelchair during the holidays, just in case, shock, horror, she may be seen by someone from school. Anyway, parked up and got out of the car, displaying blue badge. Grumpy, old woman getting into car parked next door said in a very loud voice "none of them look very disabled, do they". Now whole car park looking!! so I became mrs open-mouth-before-engaging-brain and said in an equally loud voice."For your information it is my daughter (pointing to DD3) who is disabled."
"She doesn't look it. Do you have a blue badge to prove it?"
"Yes it is in the car and as for her not looking disabled, you should not judge. Ask her consultant!"
Then an incoherent mumble to her friend, a giggle and another look!
Me now seeing red, DD3 sobbing behind me. "Look what you have done. Are you pleased with yourself now?"
"Well, she looks well."
"I can assure you she is not, but I don't feel I should have to explain myself to you."
I stood with arm around DD expecting an apology, and all the silly bat woman did was stand and stare, tut and raise her eyes to heaven.
I then asked her "Have you got anything else to say" (eg sorry)
"Well, my dear." to DD "you are lucky you look so well!"
More loud sobs from DD and I walked away with fume not only coming out my ears, but EVERY PORE OF MY BODY!!
Total ignorance! Is it something about where I live?

Oh to top it all we went to the cafe for a drink and cake to feel better, only to be charged full price when I am supposed to get a 20% discount (due to DH being manager of garden centre). I was too wound up to go and say anything!

I can now think of a million comebacks to this silly woman, but how come you can never think of anything to say at the time? Now DD saying she wont go out even without the wheelchair if people are going to think that of her!

Sorry for long rant! I feel better now!

Hi Optimistic - look forward to tomorrow

Hi all. Just managed to log on in the local library and read all the posts I've missed ( very slow!!).

Positive - I hope your 2 are feeling better despite their curly tails ( sorry shouldn't tease). Don't worry about your DD. There's no reason why she should suffer greatly from what I understand but anyway I hope all is better for you!

Dwardle - so glad your lovely DD is feeling as good as ever. Lightning cannot take away normal teenage angst!! We just have to remind ourselves of that. The further away you get from the treatment the easier it is imo.

Choc -lovely to hear from you and great to hear you are making progress with Perrins.

21again - tomorrow at 2pm. I'm sure we'll recognise each other...Looking forward to it!

Thanks 21again. Have a good meet up - look forward to hearing about it.Glad your dd is having a great time. I wish it would never end!

Dwardle - good to hear from you. I had thought that lightning would mean an end to all the problems, but as you have just pointed out, the worrying does not stop there. I hope your DD had a great day out - I'm sure she did - and she will get better and better at applying the process .

My DD is fine and has been enjoying the hols. She has spent a lot of time with friends and will be with grandparents next week, and I know they have lots planned!! I am feeling much more relaxed about her nowadays and I think she will cope when she goes back to school, I just hope we manage to avoid the dreaded flu.

How are things with you Positive, hope DD is fine?

Hi to everyone else, Choc it was good to hear from you, and Nickschick if you're around how is Sam?

Oh no - what a total stress for you. How are they all this am? It may not help to know but swine flu has been around here for a while and most of the people who got it were not too bad. It also didn't spread as rapidly or as widely as we thought - some people who had close contact did not get it. Having said that, your dd is clealy more at risk. When my dd was ill after LP, Dr decided it was not swineflu as she did not have temp, but he said there were lots of other bugs around. Am not sure about tamiflu either - thanks for info from Prof Findlay, 21again.
DD gone off to theme park today and was stressed and did not sleep well. I thought - oh no - but seems that problem is more to do with going on fast rides - or being mocked for not going on them - than anything else. Was able to get her to apply LP process and she went off looking happier but I worry so much. When will this ever stop? I just want to wrap her in cotton wool.
Good to hear you have another education option PAO - let us know more when the awful stress of swineflu has settled. My thoughts are with you.
Glad to hear from everyone else - how is yr dd, 21again?

Advice from Prof Findlay is that tamiflu is OK to give as it is anti-viral, a friend of mine had already emailed him to find out what to do for her DS with CFS, (Prof is anti vaccinations for CFS patients). My DD is currently taking a homeopathic remedy once a week to help in case she comes into contact with swine flu, it will not stop her getting it but may make the symptoms less severe. You might like to speak to a homeopath about something for DD3.

So sorry you have to go through this Positive. We are all at risk, but when suddenly confronted with the reality of it, it is such a worry when we have vulnerable DCs. Presumably you have tamiflu for your older DCs so will have some on hand immediately if necessary for DD3. Will be thinking of you all, please let us know how everyone is.

Quick come and peal me off my ceiling.

Collected DD2 and DS from a camp yesterday only to find that DD2 had started to be unwell on the journey. Home and to bed. Worse today. She is feeling very unwell. Dr says it probably swine flu as a girl in her tent was sent home from the camp with it! Tried to stay very calm and decided that we have a big enough house to separate DD2 from DD3 to reduce the risk to her. Then decided that fresh air would be a good idea, so left DD2 sleeping and took others out to the beach. In the car on the way home DS announced that he was feeling really poorly and is now looking very pig like too!!!! So much for keeping DD3 away from bugs she has been with him a lot since they have been home and sat in a stuffy car with him today. I know there is absolutely nothing I can do. If she is going to get it, then it will happen! Dr was very good, but nothing to be done to prevent DD3 from getting it, advised tamiflu at first sign of symptons, but not too sure about that, it may be better to just ride it out?????. Fingers, toes, arms and legs crossed!!!!

Well done Positive, it is a shame we have to fight so hard for the help we need, and it is so difficult also to actually find out what is available.

Have a great day at the beach, will be thinking of you as I have a busy day today. Why is it that when it is sunny I seem to have arranged to be indoors? I am obviously doing something wrong .

Choc. Great to hear from you again. Thanks for posting about perrins. Sounds as if your DD is making good steps, but sure its not easy. Hope it gets easier and the positives continue. Keep us posted.

21... thanks for your comment about CBT lady. The problem is me and DD, not her. We are both as stubborn as each other and just want to get through the next few weeks of the hols, then we will reassess life and see where we are then. We both like the lady, which probably makes it harder. When term starts again we both think that we can then concentrate ourselves more and focus on what we need to focus on.
Good news on the schooling front. Out of sheer frustration yesterday I phoned up connexions and spoke to someone there, who explained about another option that we were not even aware of. Looks promising as a back-up if the specialist unit cannot help. Only thing is we need to get the school to agree to pay for it, but I am prepared to really fight that one after the rubbish we have had to put up with from them.

hugs to all. Hope you are all enjoying the hot weather. Beach today.

Choc - it is so good to hear from you again, we have all wondered about you and DD. It is fantastic to hear that you have been able to take DD out and also good to know that she is improving, although Perrins does sound very hard work and I imagine DD needs to be very determined. She is obviously on the mend now and you must be feeling so relieved. Tell her to keep up the good work and that we all wish her the best .

Hello All - glad to see that there is lots of positive news. Sorry I haven't been around for so long, I have lurked a couple of times, but found it difficult to focus myself enough for an update. Well, Perrins is certainly not for the faint hearted, there are many downs but also we have had a lot of ups. In the last couple of weeks, DD has been out more times than she has for almost 2 years. This has included 2 outings to the local Harvester, the last one was last Friday and we ended up having lunch there, again the first time we have been able to eat out with her for almost 2 years . The vast downside is that she goes downhill very dramatically after treatment, almost immediately. This is very hard for her when she is usually feeling very well when the practioner comes. This weekend was especially tough, with very bad leg pain affecting her walking (which always scares me as it reminds me of how things were last year). But (fingers crossed) she seems to bounce back, and when she does she is definitely a lot better than she was before treatment started. We were warned that it was considered "good" to get worse before an improvement (it is all to do with releasing toxins in the body) but it is very hard and I suspect would be almost impossible to "sell" to a younger child (DD is almost 18). We also have 4 minor and 1 major massage routine that has to be done everyday, so it's not an easy option but we are making progress so we're pressing on!
Enjoy the rest of the summer and I'll try not to leave posting so long next time.

Positive - Maybe if you are both at odds over things it would be a good thing to find another therapist, or does your DD get on really well with her? We tried a few different therapists until we found one that really suited DD. Hope your DD is OK.

DD is very well now, she has had lots of time with friends during the hols and we still have quite a few things planned. She is spending some time with the grandparents next week and before we know it school will be starting again . I have always enjoyed having DDs home during the holidays although I must say I do quickly slip back into a different routine when they go back to school.

Love to everyone, stay well .

Have a good meet up OM and 21again. Is it books under the arm again?? It was so weird when we met up. We sort of knew so much about each other, but knew absolutely nothing about other parts of our lives. Have fun.

Love to you all and thanks once again for the encouragement.

I have a confession to make . I have lyed slightly changed the truth and told the CBT lady that we may (that makes me feel a bit better) be away, so have cancelled the appointment for this week. I just could not stand the condescending "Mrs B....." speech for yet another time. At the end of the hols it will be easier as life is more routine for everyone then. The thing is I know she is right!!!

So pleased that all dcs are doing so well and enjoying the summer. Long may it last!

Hi Dwardle and welcome back. It is so good to hear DD is still well and she will continue to be so now, I am sure. Enjoy Yorkshire but please don't forget us all here and I hope you continue to post. We all enjoy chatting to you and of course your experience will benefit others too.

Positive - I understand the apprehension about DD but try to get her to focus on the good things and tell her she won't be the only one who is a little bit nervous. She has improved so much and she can continue to do so .

I am meeting Optimistic at the end of the week so I shall let you all know how that goes, I am really looking forward to that .

Hi All
Am still here - just been in scotland getting midged
DD is still going strong - went on 8 mile bike ride without batting an eyelid, spent all last sat at a music festival and still got up at 9 on sun.
She is totally normal - bit of teenage grumpiness now and then but just fine. I cannot really believe it!
PAO - can really understand joy at a new fridge freezer and wet room!
Sorry you are still having bust days. Can understand frustration re sept. am thinking much the same but nowhere near as stressful as for you as dd has nice school and oodles of support. Suppose all you can do is hang on in there!
Hope you are all ok. We are! DD is about to decorate her room - wow! DH has gone to see his dad in sussex and I have a trashy novel! Have no idea what ds is up to and do I care! I love summer - even when it rains! We are going to Yorkshire next so I am sure it will rain lots there!

Littlepollyflinders Hi come and find us!

All gone a bit quiet on here, hasn't it. I really hope everyone is quiet because you are doing well. But I know we will be here for anyone who needs us.

New fridge freezer has arrived and I am stupidly happy with it. This is instead of a holiday this year, along with, hopefully, a wet room. Just waiting for the quote on that. Now we are actually glad we did not go on holiday as we are realising how slim the line is between good days and bad days!!!! Had some big bust days !! CBT lady and I are at odds slightly.

Still unsure about schooling, which is causing dd a lot of stress. - may have something to do with the down turn???? I just wish I could do something, or know what is going to happen. GGggggrrrrrr!!!!! She is getting stressed about which uniform she will need etc. as well as the general knowing what she will be doing. Must be patient!!! This is very difficult for mrs impatience! Along with Mrs control freak and mrs Evil!!! I can be mrs nice too!!!

Anyway enough ramblings after a quick drink of pink bubbly. I will probably read this tomorrow and wonder what on earth.....
Have a good weekend and keep posting, so that we can encourage others that there is light at the end of the tunnel.

Hi to EVERYONE who has been on here.

Bumping so we don't get lost.

Littlepollyflinders presumably you are a Mum struggling to deal with CFS in a child. Please come and talk to us, we have all been through what you are going through and importantly we know how you are feeling .

littlepollyflinders we are over here...!

Positive - isn't it great to be normal again?!! Seriously, it is marvellous and I am so pleased for you, Your DD was in such a bad way and she has improved so much and life is good again .

Optimistic - glad the boys had a good time and I think the weather was pretty good if I remember rightly. Looking forward to 21st and should bring DD with me.

Dwardle - lovely to hear from you again although briefly, have a great time in Scotland and looking forward to "chatting when you get back".

Hi and welcome back dwardle!

So good to hear that dd is doing so well. Life's still good here. Although we have discovered a negative side to how things are improving. DD now has the energy to be a "normal" teenager and have the tantrums to go with it!!! I remember thinking just a few months ago that I would never feel bad about DD throwing a wobbly about something, cos I would just be pleased she was well again. Oh how wrong I was. She showed us with flying colours yesterday how determined and vocal she can still be!!! BUT she also showed far more maturity than before she was unwell by calming down quicker and actually apologising and being prepared to discuss her reactions afterwards.

Love to all and keep enjoying the holidays.

Hi everyone- back from sunny france - seems like we missed the deluge! We only had 1 day rain and that's the vendee. Bliss.