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!

She just says in her 30 years of practice she's only seen one who met criteria. She just thinks we are being too soft (ie I am being too soft) and that cos dd always had lots medical problems this is as a result of mollycoddling her...

Ignore sister. That approach can do so much damage.
Your dd is in the early stages and what is most crucial then is rest, rest and more rest. My neurologist advised that I listened to my body and if it wanted to rest 5 minutes after getting up then that's what I should do. His advice has served me well in my recovery (altho not always possible with two young children).

Once the rest has enabled her to stabilise only then can you add tiny things into her day and you'll see improvements.

Sending you lots of hugs overthemill. It sounds so tough. But it will get better xx

This was m

Sorry about that.
This was my routine at about your dd's stage;

7.0 -7.10 prop myself up for breakfast in bed, try to communicate with dc.

8.15 - sit up to say goodbye to dc

8.30 -10.30 meditate/ rest in bed

10.30 - shower

10.45 - rest in bed

11.0 - rest in bed

12.30 - lunch propped up in bed

1.0 - 3.0 - rest/ meditate in bed

3.0 - shuffle downstairs to see kids come home from school. Sit or lie on sofa with them, try to talk (this was a huge struggle)

4 ish - back to bed for more rest

6.30 - try to read a bed time story to kids

Dinner downstairs and maybe one telly programme lying on sofa or just lie on sofa.

9.0 Bed.

As I improved I added a small thing in, such as helping kids get into PJs, one kid at a time. Then help brush one kids teeth. V frustratingly slow but effective in the end!

I've made that sound rather confusing. Essentially I rested in bed lying down except for small periods of sitting up in bed, a shower if possible and a shuffle downstairs for as long as I could bear to see my kids.
And then a programme on the sofa as my 'treat'.
But lots and lots of lying in bed!

^ Absolutely agree with everything said above, vital she rests at this early stage. She will get worse if pushed. Try not to think of this being forever, but as a stage / period of the illness she is at right now where she needs complete rest to get better. Please don't listen to the sister in law, that outdated clueless attitude is so dangerous to this illness xx

Just want to echo the other two ladies above. Their advice is spot on- please, please do not push your DD. If she is exhausted and fainting then forcing her to do physical activity will just make her worse. Unfortunately many GPs still don't believe in CFS and most that do follow the idea of graded exercise which has been shown to make patients worse time and time again. Many sufferers have had relapses and ended up very severely affected as a result of doing things they have not been ready for.

They key in the early stages is rest, rest and more rest; it's boring, it's emotionally very hard and it often feels like life is just whizzing past but in the long term it will make her improve quicker

Hope your DD is having an 'okay' week.

Hope you're OK Overthemill .. it's so tough for you. Agree totally with the others. All pushing is likely to do is to make your DD worse. About 2.5 years ago, my DD had improved and was able to cope with going out, meeting friends for lunch, going to the shops and she was really keen to go to college to do 1 A Level (she had already managed 1 online). She was in college for 2 hours, twice a week. By the end of the first week, when I collected her she was shaking all the way home and I had to feed her lunch and basically she lasted 2 more weeks before having to give up. Following this, her condition got a lot worse and she has not been able to get back to that level. I do not want to frighten you but I cannot emphasise strongly enough that pushing will not work with someone who is as poorly as your DD.
NewestBride I finally asked my DD if she recognised your AYME user name. She said she definitely did, although she didn't think you'd "spoken". She hasn't actively posted on AYME for a long time and had a job remembering her user name but it was something a long the lines of "Trixie Fifebelle"!

Thank you all. It's been really hard this week, not sure why. Dd is sad because she thinks she will be ill foreverand she's kind of realised she missed Christmas and it's no better. She never knows what day of the week it is. Find it hard to reassure when I have no idea and no support medical or otherwise. We are trying to stick to exactly the same routine with things in 5 minutes.
Spoke to specialists office this week trying to chase and discovered they aren't taking any new cases and even when they do it's a 2 month minimum wait for funding to be approved. They are going to get back to me with advice as to where else we can go but in the counties around the one we live there is no specialist service. At my wits end really. Dd said she thought she should just die and tbh I have wondered whether that might not be best as we have no life and no hope of one . But neither of us would do anything- how could she!?- but it's a sign of our despair
So fed up

Big unmumsnetty hugs I think your DD is getting to that inevitable stage in the illness where the realisation of how life has changed is hitting. Coming down with a chronic, life altering illness is in many ways equivalent emotionally to the grieving process- you go through all sorts of emotions like anger, sadness, denial before eventually finding acceptance. You will both get there but it is a long and hard journey.

I reacted exactly the same as your DD; to start with you feel so poorly you don't give it much thought and just try to get through each day, but after a few months you do start to worry you will never improve and it hits how dramatically your life has stopped. I cried, I self-harmed, I thought about taking my own life, I sunk into a deep depression… it was a horrible time and one I would not wish on anyone. But with support and help I did get through it and eventually I came out of the other side. I can relate to wanting it to end- I used to lie in bed just thinking what is the point? One of the things that helped me enormously though was the strength and positivity of my mum. In truth she had no idea what was going to happen and if I'd ever get my life back, but she never showed it in front of me. As hard as it is try not to show to your DD how worried you are; it doesn't matter how old we get, we still want our parents to say it will be okay! Listen to her and comfort her but if possible don't reveal your anxieties, find other support in order to stay strong for her.

I really, really would urge you to get her to sign up to ayme if she hasn't already. It was one of the things that got me through my first relapse and I have so many wonderful friends from it. You may find the helpline useful too for advice about specialists and school. They are incredibly knowledgeable about these things. There are many Facebook groups as well for people with CFS. I will message you my email address and if she ever wants someone to natter to then please tell her she is welcome to contact me anytime, I used to moderate on the ayme board so I have tried to address pretty much every problem members have had at one point or another! (not sure how successfully mind you ). I also know several people of her age that I met through ayme but have now left who would be more than happy to chat.

Stay strong, it is awful but it can and most likely will get better. I know of people who were bed bound for years who now work full time, several girls who are married and have babies, someone who was unable to talk and eat who is now at uni. There are a lot of positive stories, it just feels like it will last forever (obviously some people never recover fully, but many lead a reasonably full life). Before this latest relapse I got myself well enough to go on holidays, move out, get married, go swimming and roller blading, have a part time job etc. There is always hope

Oh Overthemill have another hug. I understand totally your despair. I have been there myself. Its almost unbelievable for someone to be so ill and to have so little help from anyone.

When I was at my blackest and thinking about suicide a lot (although acutely aware I couldn't even get to a railway line to hurl myself under a train- hope that doesn't offend anyone, but that thought plagued me) I rang Samaritans 08457 90 90 90. It helped a lot. You could ring for yourself.

I then managed to get some free counselling through a work scheme (my husband's work). She taught me some techniques for getting through what she termed Catastrophe Living, things that massively helped not only to cope, but to start to recover.

I then looked into clinics which offered real hope, like Optimum Health Clinic or Gupta's programme. That helped me feel as though I was being proactive about getting myself better.

You really really need to look after yourself too. I know its hard but anything to help lift you would help. A regular break would be a good start. Can dh take over for a while?
You may need some of your own support from your GP?

Another hug Overthemill. It really is a horrible cruel and relentless illness. But it will not last forever. Your dd can get better. Its slow, frustrating but it happens frequently and boy do you appreciate life once you start being able to see glimpses of it again.

Great post newestbridearound.
However managing the relentless positivity of your mum (my mum and dh managed it most of the time) require much looking after of yourself OP. Promise me you'll do something to help yourself. See it as helping your dd
(I know I have no right to ask you to promise me anything!)

Thank you both. Felt do dreadful earlier. Talking to dd about future plans 'when I'm well' helps

It's great to have dreams and goals to work towards. When I was initially very ill I wrote up a list of big dreams that I wanted to achieve one day- going abroad again, learning to play piano, running a marathon etc (mind you I haven't done any of them yet!) and then smaller more achievable goals in the short term. Things like washing my hair, getting dressed up again, having a drink at the pub, paddling in the sea. I ticked them off as I went a long and whilst some of them were incredibly tiny and insignificant things for most people- like a 10 minute phone call- they were huge advances for me If your DD can keep in mind all of the things she will get back to one day it makes the present much easier to cope with; granted it doesn't stop the frustration but it helps you to keep hoping.

And they will happen Overthemill, they will. Anything visual to match this helps too. I had a picture of me climbing a mountain and one out clubbing together with some pics my dc had drawn next to my bed to remind me of what I could once do and will do again.

I'm not quite there yet but almost there!

Hang on in there. Get through the days. Life won't always be like this x

www.facebook.com/groups/116996221671476/

www.facebook.com/groups/2379871070/

These are two of the Facebook groups I mentioned earlier, obviously it's all subjective opinions from members but the advice and support can be really helpful.

Visualising myself doing things helped hugely too. Try to get he really into the visualisation, noting the sounds, the smells, the feel of the sand on her toes.
I did walking through a woodland, lazing on a beach, anything that makes her feel relaxed, happy and above all it is an escape from the bloody room your stuck in! there are some good relaxation downloads on I-tunes which can help too.

Oops, link failure!

www.facebook.com/groups/116996221671476/

www.facebook.com/groups/2379871070/

www.facebook.com/groups/116996221671476/

www.facebook.com/groups/2379871070/

Now there is M.E brain fog in all it's glory- 'I know, I'll post a link'. Did I remember to click the convert box?! NOOO! Urgh most days it's amazing I can remember my own name

Great posts Newest Bride and Olive. Hang on in there Overthemill. Please speak to the AYME helpline re the problems with finding a specialist - they are really helpful. Sending you lots of hugs.

Thanks everyone. Physio called out of the blue yesterday and will visit next week. Very anxious she won't understand cfs. Waiting to find out about out of county specialist but still wondering whether to push for Bath.

Hope the physio helps. I saw a neurophysio who understood fatigue very well and she helped me quite a lot.

My suspicion is that because we have no specialist service here she won't have a good understanding. I'm hoping I'll be proved wrong but very anxious!

I would find some information online about cfs and print it off to give to her if need be. Hopefully she'll have an understanding of the condition and be able to suggest some helpful, gentle things for your DD to try but if not then it gives her a chance to read up on it and then you'll both be on the same page.

Good luck, and remember she is coming to help you both- if you feel in anyway that she is not being understanding or supportive of your DD's needs then you don't have to go along with it. I really hope it helps.

My physio didn't do exercises with me but helped me work out a plan to manage my 'activity'. Activity being teeth - brushing, washing up a few dishes and a few steps into garden to lie in the sun.