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!

I know people/ know of people who missed years and years of school but eventually picked up their education again. It can and does happen, so although 9 months seems a long time it isn't that bad. If there's one thing having this illness has taught me is that in reality there is more to life than studying- and that's from someone who worked hard to get a First pre-illness.

I hope your DD can get back to study soon, she will do I'm sure of it. Keep strong, will be thinking of you both x

How is your dd? How are you managing?
Does your dd have a close friend who could come and just hold her hand for 10 minutes?

We're kind of ok. Had argument yesterday, first in months, probably due to being cooped up together unnaturally! She's still not great. Waiting for Bath to get in touch. Physio has discharged her because they can't help at moment. Hoping beyond hope that things start to move soon. Having tougher than usual time stress wise as DH had odd medical incident the other day and being treated as if he's had a mini stroke, though we both think its stress rather than physical. Means he can't drive for a month which doesn't help at all,

Dd's best friend on Spanish exchange. Broke dd's heart when she realised she had missed out on that as well as everything else.

Get her friends to come round one by one for 10 minutes max (usher them out even if dd feels ok). Your dd needs to feel they still love and miss her.

S

She doesn't really have any interest in seeing friends. She looks dreadful and although hasn't looked in mirror for months, knows it. She has so little energy free for anything I'm not convinced it's worth forcing it. We live in small village away from anywhere any friends live so it's major effort for people to come to visit. I know they would but 20 min journey for 5-10 minutes? Feels like a pain for the parents to bring them.
Friday night DH and dad put 600+ photos up on the tv, showing off their new cameras. Apart from me finding it mind numbingly boring seeing 300 shots of muddy tractor tracks(!) dd was completely overwhelmed. Even tho some shots were ones she had taken last February (they had borrowed her memory card) of a little trip we'd taken to Bruges, she simply couldn't cope. I could feel her writhing around trying to get say from the flashing ness of the pictures changing and at the End (over 40 minutes!, tho I'd suggested a break after first 10, they simply don't get it) she was in pain. She had put so much energy into making the effort to appear interested in exciting new kit (18th birthday present) she was in agony. Got up to go to loo, fell over cos dizzy and stated there in the hall crying her eyes out for about 20 minutes. I eventually got her on the stairs, and from there gradually into bed. So no tea, no drink, not even cleaning teeth. Yesterday was awful, she wax totally wrung out and I leg her stay in bed until midday when everyone had gone off gor weekend - both DH and ds off separate places overnight thank god.it was like when they are toddles and they go from gorgeousness to full out tantrum king monster and then fall asleep.
And DH sent me a text complaining that she hadn't replied up his text yesterday. She did nothing. Sat on sofa and we watched crap mindless tv just for the company and I cuddled her and tried to make her feel better. Early bed time last night too.

Oh I'm so sorry that sounds utterly dreadful for you and dd. I would never have been able to cope with that either.

I thought I didn't want to see friends; I looked awful, felt awful and didn't think I could cope but actually when one came for just 15 minutes, held me and we exchanged a few words, (then she put a wash out) it made a big difference to how I felt.

I would have a chat with the parents, tell them exactly how little she can cope with and then tell them how much it would mean to dd. It is then up them if they make the drive. Friends of mine surprised me by driving 40 minutes each way for 15 with me. Of course some were useless and didn't get it and I am now wondering if there is any friendship to salvage.

But if your dd was my dd's friend, I would drive her.

So sorry you're not getting more support from your dh. That must be tough.

Thank you. It's just that he doesn't get it. He's never really ill and doesn't understand chronic illness.

can't remember if I posted this already

Bristol 5th Feb, Dr Speight is speaking

Thonking of you

Tough week again (still!). Oh well

What's been happening? Thinking of you both

Just really bad joint pain and fatigue to the point of pain plus sensitivity to taste and texture got worse so she's eaten very little. Nights spent sponging her down . DH still at home needing attention as he's bored. Needing to drive him to swimming and train station and hospital appointments (we're in tiny village miles away) and him not very understanding about taking second place to dd. I feel she needs me more - he's an adult and not taking advice of GP seriously to rest!

Is your DD on any pain meds? There is little that can be done for the fatigue unfortunately apart from rest, but there are medicines that can help with joint and muscle ache. Stronger co-codamol, gabapentin, muscle relaxants etc. Might be worth talking to the gp and see if anything is appropriate for her age and symptoms. If she's struggling with eating then 'easy' foods are good like mashed potato, soup, ice cream, yoghurt as they aren't as difficult to swallow and use less energy as less chewing.

I'm sorry your DH is not understanding. There are some great videos on youtube that might make him understand a bit more.

Things sound so tough for you and your dd. Things I found helpful for pain was deep relaxation cds and hot lavender wheat bags.
have you seen the GP recently?

Hugs to you all x

Hello, popping by to see how you are. :)

I'm going to link to this because no one else has and I think it's a good resource for those people who are involved with but don't actually have ME. Spoon Theory. It's written about lupus but the idea is transferrable to ME.

As someone who was once the child in this situation I'd like to stress a few things. Cut her hair if she wants it cut. It's not giving in to the illness if it's something she wants and enables her to manage better. Stop making her shower. Once or twice a week is plenty.

Quit with the baths or if she wants to keep one, switch it for a shower session. I am nearer a 40% on those grading charts and twice a week washing is my absolute limit and exhausts me - crap knows how she's managing more when scoring 10. Washing is more tiring than simply sitting and being showered - you need to recognise that every task she does has to be broken down into stages. Spoon theory covers that a bit.

Don't put pressure on her to get better. Let her bring up the "when I'm well talks". I'm sorry if this is harsh but you need to understand that she may not recover completely or at all. Yes, you need to be positive but that doesn't mean you can afford to ignore the negative possibilities - for her sake. Tutoring doesn't sound like a good idea right now so don't pressure her - let her have a break from education. She can catch up when her brain is in gear.

Try to give her elements of independence. When to wash. What to wear. What channel to watch. What snack she wants. Whether she wants to cuddle. Stop waking her if her nighttime sleeping pattern is unaffected. At the peak of my illness I slept approx 12-16 hrs a day no bother and I certainly wasn't unusual. Her sleep is probably really poor quality and you may find that if she has more rest her awake time is less spent being stressed or sad.

Can her bunny come into the house to visit her rather than vice versa? I get that it's ideal that she leaves the house but she sounds too unwell and the bunny could help her confidence and give her some company if all she's relying on is the telly.

Sort your DH out. Pronto. He is a grown man. He does not need 'attention'. She will know he doesn't give a shit about understanding what is wrong with her and it will be the most demoralising thing in the world.

Best wishes to your DD.

I agree with everything that olidusUrsus just said.

I love the Spoon Theory, had completely forgotten about it

Also agree with olidusUrsus, especially about allowing her to choose things which she wants to do and can cope with. Life with CFS is so limited anyway that feeling like you still have some sort of choice is better than no choice at all. Plus you still want independence, even if it's only with tiny things.

I hope today is a good day for you both.

She showers once every 10 days! Never baths now. Hair is me doing it over bath or kitchen sink maybe once a week. She doesn't really want it cut short she just doesn't want the hassle. Everything is if/ when she wants except stuff like meals and that I time according to when she has energy. She does snooze in day, lots. I feel guilty letting her but she needs it and it gives me a break. Night times still tough as she is waking needing sponging down because of sweating so much. I try to bring rabbit inside but she's hard to catch! We look out of window mainly now. Dd is fainting couple of times a day- yesterday both times hitting jaw and bruising it badly. Now she is in lots of pain.
And DH seems to be sorted out, yesterday he told me he's leaving me because I don't seem to care about him and he doesn't like how I'm caring for dd, he thinks I'm making her worse

Fainting can be an M.E symptom but it might be worth asking your gp about it just in case there is another underlying cause. I think POTS can cause fainting, and often people with it get misdiagnosed so you might want to look that up too.
If your DD likes looking out of the window then both window boxes and windchimes/mobiles can be lovely things to look at . If she struggles with bathing and showering then a seat can be invaluable (I always sit down). You can buy all over body wipes which are great for in between as well.

I am so sorry your husband is being so unsupportive. It's incredibly common unfortunately I'm going to link a video from youtube that shows how severe CFS can be and why early rest is so vital (you know you are right in what you are doing, ignore him). If you can, ask him to watch it. He needs to see that your dd is doing her best and battling something which can be life threatening. To be honest as a grown man I find it strange he needs you to care for him in the same way you would your child, don't let him make you feel guilty because you are doing a FANTASTIC job.

Do you have much help/support? It's easy for carers to become very depressed and beaten down by circumstances. There are some good M.E charity helplines if you need to talk with people about things.

Not all sufferers end up like this, so please don't get scared by it, but I think it's important your DH understands the severity of CFS and the impact it can bring xx

Thanks for the link. We think it's POTS but GP not interested. We shall have to wait to see what the specialist says. She seems to have all the symptoms of it

Show him this if you think it'll do any good, it's not just her

'... You told me continuously that I had a confidence issue and that I just had to put mind over matter. Do you know how hard that made it for me? Do you know half the time that you caught me crying was because I was so scared of what you were going to force me to do next? I had so many horrible effects from that; extreme payback, all of which you completely ignored. And then you wondered why I wasn't getting better. The things you'd say made it out like I didn't want to get better.'