CFS in teenager, can anyone with experience suggest a routine?

[overthemill]

Dd 14 recently diagnosed with CFS and waiting to see specialist cfs paediatrician out of our area as there is no one in our area. We know from reading that she needs a routine. She is really severely affected at present and is almost bed bound though by using bottom to come down and hands and knees to get up she is managing to come downstairs each day. But what routine should she have? I try to get her up around 10 but it takes about an hour ( more on days when I insist she showers) to get her out of bed and dressed. Most days I have to dress he and clean her teeth. She gets down, eats breakfast and stays on sofa until bed at 8. I try to encourage and stimulate her but it is very hard. Mainly we watch tv and chat a bit. Tbh she doesn't watch tv it's background for her. She can't bear bright lights or noise so lots of day we sit with curtains closed. She can't read or concentrate and a conversation is hard as she forgets words. Last week I got her outside (about 15 steps for me) to see her rabbit. Eating is hard as she struggles with smells and tastes and has to est same plain food every day. No variety at all. She tolerates eating but wouldn't do so unless I basically forced her! When she gets up to go to loo I have to help her up and provide balance for her as she is so dizzy and she faints frequently. I am scared to leave her alone. I get up to her several times in night and during evening when she is in bed.

So, what an earth can I have as a routine? What should she be doing? Today a maths tutor from medical needs team is coming but she expects to come say hello DNS leave. They font think she's well enough for tutoring. After Xmas we are hoping for a physio to assess her and an ot who can suggest ways she can be more independent as she hates me having yo provide intimate care for her.

Any ideas from you people with CFS experience? Am happyish to wait for specialist input but feel I may be making her worse!

huiled that's a good thing! I'd thought an OT would do that though? So confused. She seemed to think part of the treatment was getting dd in to the hospital but I persuaded her I couldn't do it yet.
newest good idea, I'd like to be prepared. Would AYME be a good place or maybe bath hospital? Will look over weekend

I thought it was a good thing too. Yes she kind of replaced the OT really. The main thing she did for me was emotional support. She let me have a good cry and showed me that recovery was highly probable and what it would look like (lots of ups and downs but with a general trend towards improvement). She was used to treated MS and Parkinson's patients and so comparatively I felt lucky that my illness tended to improve rather than worsen.

We set goals together. for example my big one was being able to pick up the kids from school and she helped me work out how to break this up into bits, e.g. 1. lie down all day and then sit in the car, 2. lie down all day then sit in the car, drive round the block, 3. lie down all day then drive to school and friend walk dd to the car, 4. drive to school, sit on bench outside school etc etc.

The good news is that, 18 months from seeing her, I can now walk them to school and back and then get on with my day fairly normally with just a few rests (just mentioning that to give you hope)

As newestbride says don't agree to anything you're not happy with. I'm just telling you my experience so that you have something to compare with.

Heaps of luck to you and your dd

Last night (at about 4am) dd asked if we could go to see a specialist as she doesn't think we can do it by ourselves. :-( so today will be spent begging a hospital centre to take her as a patient

Please be careful if you do want to find help at the hospital. It's really important to have help from a doctor who understands and has a good grasp of CFS; if you end up with one who doesn't get it the consequences can actually be worse. You need someone who has the expertise not to push but to encourage and work with your DD to find a treatment plan she can cope with. I hope you can find someone like that

Do you have a specialist centre where you live? I have been quite fortunate in that both Hampshire and Dorset have one, although I found the Dorset one was better when I lived there. Have you had a chance to contact Tymes or AYME yet?

I hope today is an okay one for your DD.

I am only going to try cfs centres like bath. We have no specialists in our county or close by. The nearest place (35 miles away) isn't taking new referrals. I have looked at the AYME list of centres. Trying for those that also have a PoTS specialist so not so much travelling

We are thinking of moving. If we do the availability of a specialist centre may influence location! But know moving probably beyond our abilities at moment!

I think that's positive overthemill. no-one would expect to get better from other serious illnesses without specialist help.
Overall seeing specialists has been positive for me. You don't have to do everything they say and if it feels like something is making her worse, just stop it. But they do have years of experience to draw on and it can be reassuring just knowing they've got lots of other people better.
One of the best approaches I found was to set small targets but without a timetable.
Good luck overthemill.

God that was hard! All my instincts screaming out 'too much' but going to try to implement her suggestions. Working towards (3 weeks) sitting on side of bath for daily wash, feeding fish morning and night, sitting at table for tea, no duvet or pillow on sofa. Doesn't dound much but it's like a mountain for her. Physio will come out again to monitor progress. Aim is to get her into physio centre.

Just take it all very slowly. Monitor your DD's progress, stick with it if you see positive results and if she seems to deteriorate further then definitely review it. Even if she can just accomplish one of the things on that list then that's brilliant! When I was very severe I couldn't even cope with the wash part let alone the rest.

Good luck to her, hope it goes well for you both.

Listen to your and dd's instincts and just take one tiny thing at a time. 'Slow and steady' gets you well much quicker than 'boom and bust'.

I would ask dd which of the things she would like to do most e.g. feeding the fish (that sounds the most fun to me but I'm not 14!) and work towards doing that and leave the other suggestions until that one is happening regularly.

So on day one, maybe she could watch you feed the fish from the sofa, day two walk half way, sit on a chair and watch you feed the fish, day three, get right up to the fish and watch you feed them, day four do the same, day five, you unscrew the lid on the fish food then she feeds them.

Obviously I don't know the layout of your house or any other factor. but that's the sort of pace things went at for me at the start!

If activities are making symptoms worse then you need to cut back or just stay where you are until she stabilises.

Its bloody scary doing anything new and wondering what its going to do to your body but try to manage the fear if you can!

Good ideas thanks. I am so nervous because when I look at he charts and things about it she seems to be on the severe sids. Whilst I don't want to disable her I also don't want to over push her. Long term she will get well

It will start to feel better once she has a little progress behind her. This is almost certainly the worst bit.

Have another hug. Your dd is lucky to have such a great mum.

So fed up. The cfs specialist we were referred to is tull and not taking any new patients. Back to the drawing board. And our lovely CPN is off on carers leave for the foreseeable future. Sorry for her but now no support at all

Please talk to the AYME and Tymes Trust helplines. Whilst both organisations have a different approach they will advise you. Take care.

In all honesty once your DD has seen the specialist a couple of times and you have established regular rests and charting her activities she will likely get the hang of managing this herself. Of course having someone you can contact for support is always going to be useful but many M.E people have just learnt things on their own or through charity helpline advice and internet facts sheets, because M.E provision in the NHS is so woefully inadequate.

It might feel like a dead end but trust me it isn't; the specialists don't have a magic wand unfortunately and a lot of what they will advise can be learnt from other sources whilst you wait. Have you tried researching pacing online? Charities like AYME and Action for M.E have booklets that explain it, and you should be able to find the activity colouring sheets using google. Like chocaholic says the helplines will be able to offer advice, they often encounter people experiencing problems with accessing medical help.

The other option is to go private but obviously this is incredibly expensive and still won't guarantee better results or progress. Many of my friends who have been treated privately have had far better testing done though, looking at things the NHS doesn't. It's a shame that these aren't more widely available.

Do you have any local M.E groups? I know there are ones where I live and many other counties have them too.

There's nothing local theta the problem tho finding AYME very helpful via forum. The reason I'm keen to get her to specialist is to establish a routine that we can wave under the noses of all the medics in the extended family plus my DH who just keep saying 'she must do more' without having any medical basis for it ( ie they've not seen her since illness or saw her once on Xmas day) I need some medical back up to stop them saying we should aiming for school by fen half term and stuff like that. Feel very alone and trying to trust my gut on thus one, or she is very very unwell and they all have no idea being unbelievers in the condition

And the physio who visited last week and told dd she wasn't ill but just had a collection of symptoms!

I'm so sorry overthemill. That's what everyone said to me, that I should push to do more, but I just knew I couldn't. Trust your gut.

I trusted mine and I am so glad now that I did.

You're not alone. We're here.

I'm sorry some of the family are disbelieving. This is likely to be the case unfortunately, most sufferers have people in their lives who are at best sceptical of what is happening to them. It is rubbish Just keep trusting your instincts and listening to your DD, you CAN get through this. Something will keep you fighting

This guide on pacing might give you some good starting points:

www.wames.org.uk/pacingweb.pdf

That's a good link newest bride ... not seen that one before

It is isn't it except the bit about you don't lie around all day with ME worried me as dd does indeed do that! Great session with dietician yesterday who suggested some things to ask physio about what specialist cfs training she'd had to put my mind at rest.
Contacted doc to ask for referral to Bath too. Have to get this sorted for my own sanity

There are a few issues I'd have with that link as well over, it's great for explaining how pacing works but there are a few things that in my experience I would disagree with including that bit. It's a guide aimed at people with mild to moderate M.E, it doesn't really touch much on the severe end which is probably why.

Glad that the dietician went well, so many people see improvement by changing diet. Good luck with the referral to Bath too.
How is your DD at the moment?

She's ok kind of, had temp at weekend and needed lots of sponging down. Not slept whole night through for few days which is exhausting. We've cancelled tuition this week as she's not well enough, but I think she's not really well enough ever! Just pinning hopes on bath

These are great if she regularly suffers temperatures:
www.chillow.co.uk/chillow

First time that I had very severe CFS I was hot all the time and used it lots, now it tends to be the other way but I do still use it occasionally. Is she on anything for sleep? Meds can help, many people are on low doses of anti depressants (used solely for that or pain, not depression) or take melatonin tablets.

Sorry she hasn't been well enough for school. Education will still be there though, concentrating on her health is more important as you say. I think you are doing brilliantly

Hanks for that link, will investigate. She hasn't been to school since July!