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!
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CFS in teenager, can anyone with experience suggest a routine?
overthemill · 16/12/2013 09:46
Hi overthemill 
So sorry your daughter is going through this, M.E/C.F.S is an absolutely wretched disease. Truly horrid, I would not wish it on anyone. Sending you un-mumsnetty hugs because right now it sounds like you are worn down by the situation and could do with them x
Firstly the fact that your daughter is still very young is a bonus; not much is known about this illness but research suggests that those who are children or adolescents when they develop it stand a higher chance of recovering or resuming a reasonable quality of life. So try not to panic or worry, because there is always hope.
I fell ill when I was 22 (26 now), and like your DD all I wanted to do initially was sleep. Although it is often advised to limit sleeping in the day so as not to disrupt night time it was the only thing that helped me feel even remotely 'okay' for a couple of hours in the day. If your DD wants to nap and is generally getting a good amount of hours at night then I would let her- sleep is vital for recovery, it's her body's way of saying it needs rest.
When very poorly with this illness it's important not to overstretch things, and the lower down the scale the less she should be doing. Allow her to concentrate on the basics for survival because right now it seems that it's what she needs; get food and drink in her to keep her strength up, help with bathroom and regular rests. Anything else is a bonus. I know that sounds terribly boring and difficult- no bones about it, it is. I know because I spent over a year bed bound literally doing nothing. If she is able to, find low level activities that can give her some pleasure without making her symptoms worse: colouring in, painting her nails, drawing, listening to audio books, meditation, puzzle books, writing letters etc.
The advice from experts in the field is that it's important to pace and not overdo things. A routine is good for this, but takes time to establish; from your post it sounds as though at the moment your DD is not well enough to be doing that much, so her routine needs to be incredibly limited. You say that she will come down for food sometimes, if she can't manage it can you take it up to her? When she is unable to wash or shower use wipes and dry shampoo? The book that CFSKate recommends on severe M.E is literally amazing, it's not that expensive and I cannot recommend it enough. It covers everything from mobility aids to benefits to pain relief to activity and rest. If you can purchase a copy then I would, it may be invaluable.
I have a few friends who were seen by Dr Crawley, is she still based in Bath? She helped a lot of them regain a reasonable level of functioning . Because your daughter is now missing a lot of school she is likely to get lonely, AYME is a brilliant charity for helping with this- they have message boards where people up to the age of 25 can chat (it's all moderated- I used to be one!- and only available to members) and can set her up if she wants with email buddies, pen pals and a local group where meet ups and things are held. They also have an online magazine and services especially for severely affected members. I made so many friends though them and would not have gotten through the last 4 years without them.
As a mum, it must be heart breaking to see her going through this; I'm over a decade older and yet when I was bedbound and being cared for by my mum she would have to go and cry in the other room sometimes out of desperation and fear for me. It must be even harder for you- relatives can often feel so helpless. There are various charities around with helplines that can offer carers advice and support, and there is an online site called foggy friends with chat rooms and a forum on all sorts of topics. Many carers and parents are on there and it is free to sign up. It might also be worth looking into Carers Allowance if you haven't already.
If I can help in anyway then please feel free to message me, sorry I have rambled on for so long! But when I read things like this it just transports me back 4 years to when me and my family were thrown into this awful world and felt so scared and alone. There is help out there and it does get easier, but sometimes it doesn't seem like it and it's hard to know where to start. Relapses and uncertainty just make it all even more tricky to get your head around! But over time you will. Also if your DD ever wants to talk to anyone then you can message something from her, or I can put her in touch with some lovely AYME members who are a similar age.
Stay strong and best of luck for the future. It will get easier x
"he" being your DD's Dad .... didn't read it through properly before posting!
That's the thing with CFS, many people assume it's just fatigue but actually it's so complex that it can affect every part of the body and when severely ill it feels as though you've been poisoned. Your body is heavy, everything aches, your head spins... sleeping is not only necessary for recuperation but it is also the only time when you aren't left feeling horrifically poorly. There are times when honestly if someone waved a £50 note under my nose I wouldn't have the strength to take it! Your DD obviously feels so ill at the moment that missing her 'old life' hasn't come yet, but when it does there are plenty of places for support around.
If nausea is one of her main problems then there are definitely things the doctor can try; is she already on many medications? There's no cure but various painkillers and anti-depressants can help to relieve some of the symptoms. Things like amitriptyline and melatonin can help aid better quality sleep too.
The best thing to do for the time being is just follow your daughter's lead; let her say when she can manage things, and if she can't don't pressure her or force her to do them. Most CFS sufferers will tell you that the reason that their health has declined is from pushing themselves to do things they were not really capable of. If she isn't well enough to get down the stairs one day then can you find her nice things she can do in her room instead?
Chocaholic I probably know or know of your DD, AYME is a very small little world I hope she is doing 'okay' at the moment, especially with all the difficulties that Christmas brings.
That's great to hear that you have seen someone who was positive and helpful, it makes such a difference just to have someone who believes in it and wants to try to make things easier. Diet seems to improve things for a lot of people so I hope it eases some of your DDs symptoms.
Chocaholic I used to be 1987Katherine on ayme, but I turned 26 in the summer and had to leave. I miss the companionship of it though, it was a nice safety blanket when I needed people who understood! Best wishes to your DD, I hope she has a wonderful Christmas and a better 2014
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