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Children's health

7 yr old with CFS - can't leave home with her, can't leave home without her. What do I do?

21 replies

katsh · 01/07/2009 11:05

My dd2 has just been diagnosed with chronic fatigue syndrome (m.e.) and is not well at all. On days like today she can barely walk and needs to be sitting or lying at home. I have 2 others aged 9 and 1, and so have to do things for them too which involve leaving the house. Obviously she has to come with me, but it means that I am unable to leave the house at all apart from essential trips ( eg collecting ds from childminder) . It's only been a few weeks, but I really don't know how to manage. Has anyone else been in the same situation and what do you do? This is likely to be our reality for months if not years. I have no family nearby and most friends are not in a position to help due to illness/ jobs. Good ideas welcomed!

OP posts:

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TrinityRhino · 01/07/2009 11:08

a wheelchair?

then she could come out with you maybe?

Sorry I dont know anyhting about M.E

I hope you get some good ideas

PlumBumMum · 01/07/2009 11:08

What age is she? could she go in the pram? sorry if that is a silly question as I don't know anything about M.E.

bump

PlumBumMum · 01/07/2009 11:09

x posts Trinity sorry

Bramshott · 01/07/2009 11:13

Do you have space for an au-pair?

Casserole · 01/07/2009 11:19

Could you enquire locally to see if you can find a childminder or TA or similar who would like a few extra hours work each week? Cheaper than an au pair and they could maybe come to your house for an hour or two a few days each week - at least then you've got times when you know someone will be coming?

Carers charities etc may be able to help with ideas...

So sorry, what a horrible time you must be having x

SOLOisMeredithGrey · 01/07/2009 11:28

Katsh, I'm sorry to hear your Dd has ME. It's a terrible thing to have at any age. I have had it for 10 years this year and it is often all consuming.

I don't know what to suggest really in terms of getting your Dd about, though a wheelchair does sound sensible.

What is Dd doing about school and her usual activities?
Can I just say that when I was officially diagnosed, my immediate reaction was 'It's not going to beat me', and I pushed myself harder. This was, in hindsight the worst thing I could've done. If I'd listened to another sufferer, I could very well have been done with this disease years ago. She told me to stop working, stop going to the gym and listening to my body. I ignored her advice entirely and relapse often.

Try to get advice from the ME Association. I did not, but I did get advice from St Bart's in London. ME Association

SOLOisMeredithGrey · 01/07/2009 11:30

Sorry, that should read, start listening to my body.

katsh · 01/07/2009 13:05

Thank you all for your responses. We don't have room for an au pair but the childminder / ta suggestion is a good one. I think that knowing that I could have a few hours a couple of times in the week, would mean I could manage the days that I couldn't go out.
She is a bit big for the pram, and I hate the thought of a wheelchair, but I guess it may come to that.
Solo I'm sorry to hear that you are unwell with it. It is a horrible illness. We are fortunate that she has been diagnosed quickly, and we are pulling back on everything at the moment to try to give her rest. I'm amazed by how good she is already at listening to her body. I then need to listen to her .
Thanks again for your posts

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PlumBumMum · 01/07/2009 13:08

I think you can get bigger prams though, so not quite a wheel chair
for your dd hope you find a good solution

velbels · 01/07/2009 13:13

If they have a scheme in your area and get a referral to home start as you have a child under 5. (try your health visitor or gp.)

They may be able to support you in staying in with your daughter so you can go out.

MarmadukeScarlet · 01/07/2009 13:18

You can buy large off road style 3 wheelers for up to age 10's, transport but just not a wheelchair.

katsh · 01/07/2009 14:24

Thanks all again. Velbels - is home start the same as sure start - it sounds promising. Presumably as it's for the under 5's it's focus would be on enabling me to have time with my 1 yr old?
Big prams sound better than wheelchairs so I'll look into that.

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velbels · 01/07/2009 14:47

No home start are not connected with sure start centres they are a charity that supports anyone with a child under 5 in the family, who's struggling for any reason. They connect you with a volunteer who visits you regularly. www.home-start.org.uk/

katsh · 01/07/2009 20:58

Thanks Velbels - I've looked up their website and they are active in my area so I will give them a call tomorrow.

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3seater · 01/07/2009 21:01

a Maclaren major pushchair might suit you. In our area you can access them through wheelchair services if a consultant etc refers.
Hope that you have applied for DLA and all other bit and pieces that might help. Good luck

SOLOisMeredithGrey · 02/07/2009 00:20

If you have yet to fill out the DLA forms, get help to do so. I was refused DLA for my ME simply because I was totally truthful and wrote down my best case scenario rather than my worst. They said I could dress myself and walk sometimes, therefore I wasn't sick enough(never mind that it took me 6 weeks to fill in the forms because my brainfog was so bad). Try CAB to help you with them.

cory · 02/07/2009 10:09

Sorry to hear this.

We've been in a slightly different situation but with similarities- dd has a joint disorder not ME, but as it means she sometimes can't walk or even sit upright it's a similar change to our lives.

I remember a ghastly amount of juggling before she got to an age where I felt happy leaving her alone in the house.

We went for the wheelchair against doctor's advice, because we felt she'd be better off being less restricted. You get to a stage where trying to hide your illness is not first priority any more. And it has helped us, there's no doubt about it.

I would definitely second getting help for a few hours a week if you can.

And get help with DLA, definitely.

5inthebed · 02/07/2009 10:12

This reply has been deleted

Message withdrawn at poster's request.

katsh · 02/07/2009 13:40

Thank you all again. I need to look into getting a bigger pushchair; 5inthebed that is a really kind offer - I will get back to you on that once I see what might be available here.

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SOLOisMeredithGrey · 02/07/2009 14:04

Katsh, you could also give Freecycle a go. It's amazing what is given away or what people have in the shed/loft/porch that they don't know what to do with.
Good luck!

5inthebed · 02/07/2009 18:40

No problem Katsh. It is in great nick, as only used it for a few weeks before DS3 was born last November.

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