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

(550 Posts)

Nice sparkley new thread for us! grin

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

"Old" members include:

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

and Dinamum

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

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

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

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

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

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

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

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

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

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

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

Hi to everyone, hope things are ok.

Hi all,

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

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

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

Hi OM hope you have found us!

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

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

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

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

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

Hi to everyone else on the thread and lurking.

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

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

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

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

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

have a good weekend everyone. smile

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

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

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

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

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

21- hope all is well with you.

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

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

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

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

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

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

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

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

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

Hi to everyone else, have a good weekend.

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

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

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

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

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

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

Have a good weekend. grin

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thanks for the posts.

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

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

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

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

Hi to everyone

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