Support thread for mums caring for child/teenager with CFS/ME. Part 2.

[PositiveAttitude]

Nice sparkley new thread for us!

This is the sanity thread for those with DCs suffering from CFS/ME.

"Old" members include:

PositiveAttitude - Me!
Dwardle Optimisticmumma twentyoneagain Chocaholic73 Katsh
and Dinamum

I was going to do a round up to introduce ourselves to any new people that wanted to join, but the old thread won't let me scroll back beyond January, so not much good and if I do it off the top of my head I will get it all wrong...
SO just jump in and keep the support and sanity flowing!

Come and rant and rave, get support and advice from those who have been there before you, but most of all come and share positive steps forward, no matter how small and insignificant to people who don't understand. Lets celebrate those small steps together.

I declare thread part 2 now open.......

Positive wow ..sounds like you have been going through the mill ..the last thing you needed! Really glad your results were good and you can hopefully start to move on from that.

A lot of what you said regarding the wheelchair rings true for me. Until we went on holiday we hadn't used the wheelchair for a very long time, but it did make all the difference and meant DD was able to get around more, but locally, she won't entertain the idea. Appalling that one shop assistant can have such an impact, people don't realise sometimes how big an effect they can have. Great news, that DD is now realising she needs to do less, if she can keep on an even keel in that way, it would be a huge confidence boost for her.
Cuppycake hope you're doing OK now.
Dwardle Avenue Q is the London stage show with all the puppets. I understand it's a bit risque ...I was told I wouldn't enjoy it!!
Hope everyone is having a good week. Lovely early autumn weather here - long may it last!

Hello all. positive so sorry to hear you had a scare, you've got enough to worry about at the moment!

I'm off out today, taking all the dds to a craft show. I've got a wheelchair booked for dd and she says she happy to use it so we'll see how she gets on.

I'll be back later to let you know how we do :D

Hope you and the dcs all have good days today,

cuppycake xx

Have a good day cuppy. Dont expect too much for a few days afterwards.

Hi all, hope you have had a good weekend and all the children have relaxed and feel recharged a bit. Life here was a bit hectic last week - mainly due to up and down nature of daughter - off school on monday with sore throat, back into school, meeting with school, appt with Gp, blood tests, you are all familiar with this I am sure, I am just grateful that I only work part time!!!! Husband has begun new job away now so it is just me, and have to say patience in the morning is a little thin! Have noticed, and wondered if this is common, that daughter is very weak and hard to get going in the morning, and it was a battle every single day last week. In the afternoon she seems like a different girl, we had a morning where she had a lie in an didnt have torush around, and that extra hour made a HUGE difference to her. We also found out that (after 5 months of going to different GPS and finally finding an empathetic, concerned and motived young female GP) her GP is leaving next week, but she seemed happy to press for a referral and has recommended a therapist ( lymphatic???_ in North Manchester.... any experience of such things???? Weekend has been much better if shattered, but has managed some homework and survived her brother's 10 y birthday party. Each day different, so hope yours are doing better. XXXXXXX

Hi, sorry for not responding to posts,but just wanted to say we've just held a coffee and cake sale this afternoon( for a very strict 1 hr) and have raised £160 for AYME !!!! DD's idea . Worth all that baking

Well done Katsh baking is always a good thing :D

Guineapiglet what you say of your dd is true of mine. Mornings are impossible but she seems better able to cope with stuff in the afteroons.

We had a great afternoon on friday, i think she actually really enjoyed the wheelchair despite her initial misgivings, i know it meant we were able ot see the whole show. She did sleep well when we got back though:D

We've had a quiet weekend now getting ready for our meeting with the OT tomorrow, morning appt again! Maybe we ought to tell all these ME/CFS specialsists to only hold afternoon clinics :O

hugs to all, cuppycake xx

cuppy thanks for message, hope you get there OK and that your OT is able to be supportive. Your idea about afternoon clinics is a great one, but sometimes I want medics to come and see her at 7 am so they can see what the struggle is all about!!!!!! She has just left for school holding a note from me excusing her from PE for next couple of weeks, so we can try and cut down on the exertion/exhaustion pattern... PE teachers seem to be a specific type of breed tho' , I wish they could let her do as much as she feels she can, say 10 - 15 mins and then go in and gradually build up rather than playing tag rugby for an hour in the freezing cold. I know I would nt like to do it!!!!!! katsh the baking for a fund raiser is a brilliant idea and we may have a go at this ourselves. My daughter loves to cook, even for a short while and finds it restful, so thanks for the inspiration. Cold and grey here, trying to get motivated as son is now off school with a croupy cough......XXXXXXXXXXXXXXXXXXXXXXX

Morning all, bad night with DD last night and now I'm trying to get her up its like trying to motivate a stone! She can barely move or open her eyes, coherent speech is still a long way off!

On top of that, because I didnt sleep till really late I overslept this morning - didn't wake up till 9!!!!!! I'm typing this while I wait for little DD to fnish her cereal! Luckily I only live a minute from the school - when I phoned in I felt such a twit!!!

OK - lets hope the rest of the day goes better than it started :D

Hugs to you all and hope the DCs have a good days,

Cuppycake xxx

My Dad just came round and asked how the OT visit went. When I told him that the assement went well and that she had been measured for a wheelchair he threw a hissy fit and shouted "Dont expect me to take her out in it". Last time he came he told me off for not making her do more schoolwork. How can he expect her to do schoolwork if he wont see the need to preserve4 what little energy she has. Since i lost my mum hes all i got left and it shouldnt hurt me this much but it does. i cant stop crying.

Cuppy, I do think that CFS/ME is so very misunderstood, but particularly by our parents generation. My dad was very insensitive and would say comments like "Skiving off school again then?" and "Havent you slept enough?"
In a way I had to make a conscious decision to become very selfish and not worry about what others thought.
It has been a very emotional day and I am not surprised that you are feeling so low. The day we got DDs wheelchair I opened a bottle of wine to drown my sorrows (it happened to be the 18th anniversary of our first DDs death too ) and a friend text me and asked what I was celebrating!! I cried all evening!!
I am glad your DD is feeling fairly positive about the wheelchair. Yes it will definitely help with preserving the energy and being able to actually do some things that she will enjoy, without using loads of energy.

Guineapig sorry to hear your GP is leaving. I hope your next one is just as good. Not heard about the Lmphatic connection, but then I had a fit when we were referred to Dr Crawley and I read she worked at the Rheumatic diseases department, so I shouldnt worry too much!

DD is just about managing the reduced timetable, but still early days!!Boyfriend is away on holiday with his family this week, so she is not a happy bunny!! Still, no distractions to zap her of energy

Hello all. Cuppy - I wish we could all just sit with you and hold your hand. It is so dreadfully isolating when you are trying to cope with the most horrible illness taking your child's energy, and even those nearest to you just don't get it. I am glad that your dd has got out in the wheelchair - I hope that it gives you some chance of a few more fun occasions together! I cried for months at the start of all this, and then I just became a bit cross, and now I've learned who to share the ups and downs with . The lovely ladies on this thread gave me some advice in the early days. I don't remember who it was who told me just to put my hands over my ears and sing through the less helpful comments from people . I hope that tonight is not such a bad night for you. Guineapig - hope the new GP is good. How was school today for your dd? Positive - I'm sorry you've had a health scare. I hope you are starting to feel better again. Glad dd seems to be coping with the reduced timetable.
My dd was a little more fatigued today following our cake sale, but she still managed the day pretty well. I had to go out to get dd1 (who had an inset day), some new clothes, as she only had summer stuff that fitted her and it's too too cold now! dd2 did ok at the shops and actually ended up with a few new things for herself. As she is so thin and pale I am desperate to dress her in warm looking, chunky, bright clothes, and she doesn't object !!! She has come a really long way, and although there is still a long way to go, it's good to see progress. For the first time in over a year she is having tutoring every morning for 40 mins and is managing a 10 minute piece of homework every day. Small steps but huge achievements . Hope you all have a restful night.

thank you katsh & Positive . I know it must be hard for him but hes being so insensitive about this - and I'm being oversensitive so we're clashing!

Tried to have a calm evening but I keep breaking down. It helps to know its not just me, I keep thinking I'm cracking up! all I want is for DD to get as much out of life as possible.

DD keeps growing like a string bean at the moment, shes all pale and thin too so I understand the wanting to go with bright chunky stuff idea :D I bought her a hot pink sweatshirt last week.

Think I'm off to get a hot chocolate now - with a large dollop of brandy in it!

hugs to all, Cuppy

An ok morning I think. DD was very hard to rowse and slept in for a bit but is now up and decopatching! This has been a good hobby for her because it is very effective without her having to think about what shes doing - yellow Activity :D We are started on our diary :D

im going to cook now - My future step-mum has given me a big box of windfalls so I'm going to see what I can come up with.

love Cuppycake xxx

Hi All and thanks for postings hope you are feeling a bit stronger now cuppy and the baking is helping you relax! Sorry to hear about the strife with your dad, I think men are not that good at wearing their hearts on their sleeves (understatement = isnt that we we love/hate them at the same time!) and dont deal with 'illness' like we do, we have to get on with it, and we have to acknowledge what we can deal with and what we can't. My husband couldnt deal with our sons condition ( he is anaphylactic) and even now seems to push and challenge it, whereas I accept it and work within its limitations, it is like he doesnt want to acknowldge a 'weakness' and wants it all to be allright, when underneath he is just as worried and concerned, it is just handled differently, and, usually, tactlessly!!!!! Daughter went into school today after a lie in. She WAS excused from PE, BUT, had to sit outside in the cold and watch everyone else play. WHERE is the logic in that??? I was furious! So today I took her in to miss that lesson as she has a GCSE assessment. Like all your daughters, she looked pale, and very thin, and I felt really sad seeing her not at full strength....Hope you have all had good days and keeping busy , enjoy the apples....XXXXX

Had a good cry and a sort out with my dad - oyu're right i think about it being a generational thing. He still doesnt want to know about the ME but he wants to fill the tank with heating oil because dd is always cold. Typical man -- practical solutions :D

Hope all the dcs are well, cuppycake xx

Hi All ..I can see I'm getting left behind here, trying to catch up! Well done to you and DD Katsh with the cake sale ...will she be in "Cheers"? I'll be looking out for a smallish girl doing a cake sale and wondering if it's her!!
Cuppycake sorry you're having such a rough time of it at the moment. Keep smiling and hang on in there, you're doing a great job. You're her Mum and you know best - honest!
Positive how is college going now?
Hope everyone else is doing OK ...I don't like this autumnal weather!

Hi all, Choc I dont like the weather either, I think maybe thats part of why I was feeling so cr*p at the moment. I made my first christmas cake today so that always puts me in a better mood - I love baking, its the one thing that keeps me sane :D

Take care, love cuppycake xxx

Quite a good day today, shes actually started a little bit of project work on the computer and was quite bright and chatty for a bit this afternoon.

Hope you're all ok,

Hugs, Cuppycake xx

Hi Cuppy - glad you had a better day. I am a bit nervous as I'm going back to do some study at uni, and tomorrow is my 1st day! I deferred from last year as dd was too sick then, but I'm going to give it a go now. My dh will look after her in the mornings and then a friend is going to cover the lunchtime and rest shift and then I'm paying someone for the afternoon. Just one day a week, but it feels like an enormous step to be leaving her after 18mths of full time caring. However, I think she will manage ok without me and it's a step in the right direction for her to get used to being with other people again. Still worrying though . Must go to bed .

Cuppy - glad you had a better day yesterday. Its lovely when the old spark is there again, isnt it, even for a short while.

KAtsh thinking of you today. I hope it goes well. I think it will probably be really good for you to have something for YOU, too. I am sure DD will be fine with other people. It could be a really positive step for both of you.

Here DD is struggling again, but has worked out that if she works hard on a Monday and Tuesday she can basically have the rest of the week off and recoup energy by doing nothing. I know she shouldnt do it like that, but at the moment I am letting her do as she wants because she is so desperate not to drop out of this year and have to start again next September. I will just keep an eye on it.

Hope everyone else is doing OK.

Hi all,
Katch hope you day went well and that DD was ok.
Positive sorry that your dd is struggling again, but hopefully she will be able to cope.

DD was really tired again today - slept till gone lunchtime, was completely unrousable (is that a word ?) but seems ok now she is up. Her Dad is coming to take her for the night so I'm spending all weekend baking for our village market on Sunday. i'm hoping to supplement my income by making christmas cakes so I'm making lots of samples :D

Cant eat any cake myself though because Doc says I have to lose a stone before she'll find out whats causing my dodgy knees :D

Hope you're all well, love Cuppycake xxx

Hi All
Katsh ditto what the others have said. Hope your day has been good. Think it is important to do separate stuff (says she, who hasn't managed that particularly well!). I'm going to start a reflexology course soon, so I'm trying to rectify that!
Positive sorry DD is finding it tough. Really hope it levels out.
Cuppycake you must have iron willpower - all that cake and not eating it! Hope you do well selling your cakes and DD is OK at her Dad's.
Have a good weekend everyone.

katsh - thank you for replying. I have read before that children with CFS are much more likely to have hyperflexible joints.

Hello
Hope you don't mind me posting this.....
dd got discharged by her paed today
It will get better for all your dcs - honestly.

Dwardle that s awesome news :) huge hugs to you and your DD. Success stories are vital to keep us all ppositive and hopeful. xxx