Chronic Fatigue in teenage daughter. Experience anyone?

[twentyoneagain]

Dd2 was diagnosed with CFS earlier this year and had a bad six months. After a restful Summer she seemed so much better and started school in September full of enthusiasm and hope. I guess it's all been too much and she now seems to be falling by the wayside again.

I know the only answer is rest and there is no quick and easy way to deal with it. Just wondered if anyone else has any experience of this with teenagers and perhaps can give me some tips.

Dd2 is 13 and it is so hard for her having to miss out on such a lot of school, not to mention the social side of being a teenager and being with friends. It would probably help just to talk!

Hi to Dinamum as well, please keep posting, it is good to get your perspective on things .

I just wanted to come on here to wish everyone on this thread a Happy Christmas and hope that 2010 sees recovery for all the DCs who are still ill.
Have a lovely family time.
OMx

Yep, trollbeads do look good dwardle, but I would change the name!

Can I add my Happy Christmas to you all aswell. I hope all DCs can enjoy the festivities as much as possible.

Huge step forward here this weekend. DD3 went to a residential camp with DD2 and DS. She did sleep a lot of the time, but was able to join in as she felt able to. A friend of ours was running it and he understands her restrictions and was brilliant about it all. She is paying for it today and is too tired to hold a spoon to eat, but we took all that into consideration when we discussed whether she was going to go or not, so were prepared. I am sure Mrs CBT would not approve of the boom and bust, but do we care??

Hope you are all coping with the snow! None here, just freezing and wet!

Positive I do hope DD is feeling better following the weekend.

Happy Christmas to everyone and here's hoping for a better 2010 for all .

Ho ho ho!

Decided on a Kenwood Chef instead - much more fun. Actually decided it would take about 3 yrs to achieve the look I yearned for with the trollbeads ansd have wanted a new chef for years - use my mums which I inherited from her but is very old.

Enough about xmas presents. wanted - on a serious note - to wish you all the best christmas ever and to send you all big cyber hugs and thanks for being there this year. I am sure that 2010 will be better than 2009 for all of us - we have seen that things can get better and I am sure it will continue for all our dcs. I will raise my glass to you all later when I have made it back from collecting ds from the cinema- and it is snowing - oh joy!

This thread has just disappeared off my "Threads I am on" list for the first time since I joined!

Just come on to wish all you lovely lot the very best new year and health and happiness all round for 2010.

DD3 is out at a party, which is lovely. Although no wine for me, so that i can collect her! It has been a really long year, 2009. Not one I would want to repeat, but it is done now. Looking forward to better things in 2010.

Thank you for being there for me when I have needed you. For being so positive and keeping me sane. (ish!!)

Happy New Year to everyone, and I hope that 2010 is a year of good health and happiness to you all.

Good news Positive - that your DD is at a party and is able to relax and enjoy herself at last. Hope there is not too much payback today.

I do hope we all keep posting, although I also hope that as far as DCs' health is concerned, that it is more for the company than needing support .

Hello and Happy New Year to you all. I hope that 2010 sees your children restored to full health.
I hardly dare say it but we have had the best fortnight since dd2 has been ill. She has been consistently able to cope with slightly more, and we've had more wise cracks and giggles than we've had in months. I know it's a tiny step, but it has been lovely to see and i'm hoping it continues. Thank you all for your wonderful support in 2009. I really couldn't have coped without your wise words and support. For all who said stopping school would be a good move I think you were absolutely right. I hope that for all those at school the return this week goes smoothly.

So good to hear from you Katsh. I am so pleased that your DD has had a few good weeks, and a big about the school issue. It is such a hard decision as it goes against everything we should do as a parent, but can totally understand your relief now!! Now your dd can relax and restore her energy levels without pressure from schooling.

Here DD has also had a good few weeks. She seems to have been able to pace herself and understand the limitations. I find it hard to keep a level head when I see her doing something as a "normal" teenager one day, then unable to do anything for a few days. It is hard to think of her as still "ill" at times, then hard to understand that she can actually do what she wants to at other times. I try not to be too protective as I think she needs to take responsibility for herself.

Sorry, that was a bit jumbled and probably doesn't make much sense, but hey -ho!!

I'd love to be nosey hear how all your DDs are doing. It is encouraging that they had been doing so well. No more coughs and colds I hope.

Hello All and wishing you and your families a happy and healthy 2010. Sorry I haven't been posting for a very long time, I have popped in from time to time and I've thought about posting but haven't really felt up to it. Glad things seem to be going well in the main, Katsch - I truly believe that removing school will make an enormous difference and your DD is young enough to have loads of time to make it up. Really sorry to hear about your older DC though.
My reasons for not feeling like posting have not been to do with my DD with ME but with my younger DD who has SEN. At the moment, she is not attending school which is very stressful for me. We are hoping to get her back in before too long. Anyway, update on DD1 - she is doing really well. Haven't seen the Perrins lady since just before Christmas (she's due today but who knows!) but DD has been really good. Went out 3 days running at the beginning of the week including lunch out with some friends for the 1st time in almost 3 years! The downside of the improvement is she feels frustrated as her peer group are hearing about their uni places and she's only in her 1st year of her 1st A Level. I keep reminding her of how far she's come in the last 6 months when she couldn't manage trips out at all, but equally I understand her frustration. Anyway, that's us, I will try to post more regularly - have a good day everyone!

Hi everyone - hope your snow experiences are not too traumatic!
Good to hear everyone's news - am glad Katsh that you are not regretting dropping school for dd.
Lots of positive news for the new year.
Is okay here - dd had a great holiday but was very wobbly after 1 day at school. However, we had big chat about using LP to deal with her problems - she went off and re-read all her old emails and notes off her own bat and seems to be applying them! I so agree with you, Positive, about needing to let them take responsibility!
So - 4 days into term and 4 days made it to school - even if one day sch was shut by lunchtime!
Good to hear from you, Choc - hope things get better for you this term. I sympathise re the frustration - must be so hard for your dd but you are absolutely right! She has made great progress.
Please keep posting even if just a very short post. Need the support still.

It is so good to read your posts and to hear things are getting better.

DD2 doesn't go back to school until Monday so she is still charging up those batteries and hopefully doing some worthwhile science revision.

Although we live out in the sticks somewhat, we are coping with the snow and at least no power cuts.

Optimistic hope you are all fine, hope to hear from you soon.

Hi all.
All OK in the Optimistic house. We haven't had any school for 3 days but the benefit for DD has been that she has been able to do her DT coursework in a slightly less stressful way!
Dwardle - well done you for getting DD to apply LP to school - I really feel it is the way to go for you both!
Katsch - so glad you took DD out of school. Hopefully she will be restored to health and able to go again soon.
Choc - it's great to hear from you and it's lovely to hear that your DD is improving.
21again/PA - glad life is good for you two as well.

Happy New Year to all the DC and may 2010 bring them the progress they want!

Hello everyone - in case you don't remember me, I posted a while ago, am 18, and have been ill with CFS/ME for nearly two years now.

My son turned up on November 11th, weighing 7lb9oz, and is a pure delight. I'm struggling with the tiredness, but upon reflection, if anything my ME has improved slightly, for which I'm counting my blessings!!

I wondered if any of you had seen news.bbc.co.uk/1/hi/health/8441491.stmthis? And also - the delights of the latest poll in the Daily Mail was "Do you believe ME is a real illness?", or words to those affect. Though on the up side, around 70% of voters said yes, so maybe there is hope

Hope all you and yours are well, this is nasty weather for ME! Happy new year

Congratulations ErikaMaye - so glad your baby has arrived safe and well, and that your CFS is a little better. Good to hear from you.

Just a quick question - just been turned down for DLA after a 3 mth wait! Is it worth appealing? Has anyone else been turned down and then appealed?
Have a good weekend.

congrats ErikaMaye - glad things are going well for you. Yes my DD commented on the DM poll but in far more negative tones than you!!

Katsh - we got DLA 1st time around with no probs - I gather that is unusual though but at the time she was bedbound, so I guess that helped!! We have had it renewed a couple of months back on a lower rate (but I expected that). I have heard with ME, it is far more the norm to have to appeal before you are successful. Don't give up - with the child one you are setting out to prove that she needs more care than an average child of her age I think. Have a look at the info on Ayme and also Foggy Friends if you haven't already done so. Some of the Foggy Friends stuff will relate to adults but the principle will be the same. The advice we found all said set it out "on a bad day she can manage to do X" and "on a better day Y". Do not use terms like "good day". Spell it out in detail. These forms are tough and take hours - I guess you do a letter for the appeal rather than a new form though - anyway good luck!

I was turned down, but didn't bother appealing. It took me 6 weeks to fill out the form in the first place as I was so ill at that time and my handwriting changed every time I picked it up to do a bit more. I think I gave them too much of my best case scenario and should've given my worst case instead...too honest me...

Hi ErikaMaye! glad things seem good for you couldn't get anywhere with that link

ErikaMaye - so happy for you, congrats. Try to take it easy, it is terribly tiring with a new baby and for someone with ME will be extra difficult. I wish you all the best .

I don't know anything about DLA as have had no experience of it, but hopefully it will be worth appealing.

Sorry you didn't get anywhere with your application Solo. They certainly don't make it easy for people.

solo - it makes me soooo cross - those DLA forms are dire. DD was 16 when we first did hers and so we had to use the adult forms but, of course, I actually wrote it and just got her to sign it. It must be a total nightmare for anyone who is ill and actually has to do it themselves. Just had a look at your pictures btw as I don't think we have "met" before - your DD is beautiful!

...and Erikamaye ...looking at Solo's profile made me wonder if you had in photos of your little one up ..and you do ...he is gorgeous too. Also noticed you are a big musicals fan like my DD. Not sure if you belong to AYME but if you do you may have come across her there.

Aaaw! thanks chocaholic nice to 'meet' you

I ought to put some recent pones on there...her hair is much darker now but she is still beautiful

Hi all,

Katsh - sorry to hear about the DLA. It can be such a pain and they can seem totally heartless at times. We were very lucky with DD3 as we got it straight away, but like choc (?? I think it was you???)) DD was really bad when we applied. So they couldn't really argue. Certainly worth appealing though, I would say. You have nothing to lose!

Erika - It must be so hard suffering when you have a baby to look after too. I am glad things are improving.

Here, DD has done too much trying to keep up with her sisters and brother, sledging down the hill! She got to the bottom, but had trouble getting back home again and today can hardly stand again! She says it was worth it, though, to go whizzing down the middle of the road! She has not started back at the unit at all yet since Christmas, due to Monday being inset day and it being closed Wednesday due to the snow. So she is still in holiday mode.

Have fun in the snow everyone - novelty slightly wearing thin here now - certainly thinner than the ice!

Well, if Erika wants some advice from someone who has been there it would be this:

Don't try to be super woman (I tried, I succeeded, I paid the price).
Don't ignore your body, it knows best.
Don't over do anything.
Don't borrow from the 'pot' of energy; just because you may be having a good day, doesn't mean you can do everything you've wanted to do all week ~ you may end up suffering for months ahead if you do.

Now, if I had listened to this advice myself when it was given to me instead of thinking 'this won't beat me', I'd quite possibly have been Ok now. As it is, it's been over 10 years now and doesn't look like it's going any time soon.