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.......

chocoholic thanks for supportive message - I guess I hadnt really thought of her 'crashing' but that is exactly what happened last time and I guess I didnt recognise it for what it was. Have made appointment to speak to form tutor about her and what could be done to ease her timetable, in fact a woman I know accross the road has had two daughters with ME who were both home schooled in the end. How do you get from A (where we are now) to B - (supportive/rest/out of school, not in the system) - does that make sense? Do we just keep her off school, seek medical help and then intervention from LEA/School? She seems to feel safe and secure at home and works very well with no pressure and no peer pressure - we all say it about our children, but she really is one of life's gentle, kind people - almost too sensitive for High School at times, but she had such a good year last year, academically and socially, it is hard, so hard watching it all drain away... where is my positive attitude!!!!!!xx

Guineapiglet it's good that you're going in to see the form tutor. If you can get the school on your side it will help tremendously. It maybe that a reduced timetable will be enough to do the trick. Get her to do less subjects, she then has the potential to do well in those. They worry hugely about homework and catching up when they miss lessons and so on and a reduced timetable will need to alleviate as many of those worries as possible. Hope the meeting goes well, when are you going in?

Guineapiglet I guess I didn't really answer your question about how to get from school to not going to school - it certainly happened in our case because DD never recovered from a virus during the Easter holidays 2007. She made it into school for about 3 mornings early July and I had to go and collect her from the last of those. After that she never went back.

Hi again- sitting by phone/computer waitingto speak to tutor..... when you say she never went back, how did you go about it, did you just decide enough was enough and inform the doctor/school, sorry to keep on about this, but I am unsure as to who has the say - presumably the parent, but with the back up of the doctor?? Just had text from her to say she is OK and having fun!!!!!!!! I will still keep form tutor informed as I am starting to realise that no day, or even hour is the same, just as I get myself into a kink, it all seems fine again....yet again what is 'seen' and what is 'real' 2 different things. Glad Im not a teenager, I just couldnt do it now.... XX

Hi Guineapiglet.

when DD3 was going downhill she started to be bale to get to school less and less. After weeks of us asking for a reduced timetable and the school refusing, we took along a letter from her paed saying that DD NEEDED home tuition. School then negotiated a reduced timetable, but refused the home tuition (legally I think they were on very dodgy ground, but I was too fraught to argue by this time!!) We asked for just English, Maths and Science, school insisted on loads of other "essential" lessons. Following that meeting DD attended ONE lesson, then was too unwell to return again. After 15 days off school the LA have to provide some home tuition - 5 hours a week, although DD could only access a fraction of this for the rest of her schooling.

If you get on well with the school and can communicate and feel that theya re listening and responding, then ask how you go about it all. You could ask to speak with the EWO, but mine here was used as a threat and then was absolutely useless and caused more problems. You could phone up the AYME helpline and get their advice. I have always found them brilliant and very knowledgeable about the education side.

DD is now 16, first year of college and did not attend from the beginning of November in year 10, so missed all the GCSEs. It is not the end of the world. We ahve come to realise that the qualifications will come, when the health has returned and not everyone needs to do everything at the ages that the system expects.

Sorry, probabaly not a lot of help.

DD3 had day off yesterday, so I expected her to bounce back a little. Today she has gone, but very wobbly legs and joint pains, pins and needles and looking like a ghost!! She ahs just phoned and has got boyfriend to collect her early. She's on her way home now. Oh no, I think this is all going to go horribly wrong again, just as I thought we were getting somewhere, and she wont discuss LP AT ALL, by the way!!!! I am now wondering how far she will have to be knocked back before she gives up!!

I echo......where has my positive attitude gone!!!!
No, my positive attitude is staying, DD has come so far and I must learn from her attitude and not give in!! She WILL get through this and live a full life again, if not as full as she was living 3 years ago.

Guineapiglet I think the thing is that the "she stopped going to school and didn't go back" thing is only something you can say once it has happened. She just wasn't well enough to be at school, we kept hoping she would be the following week and then when she wasn't, the next week etc etc. She tried the few half days in July and, as I said, I had to collect her. By September, she was worse, not better, with her legs beginning to give up (which they did totally by the November). The whole time uptil the September we were in the "missing education" thing ...worrying about what she was missing... After that followed a period in which DD became so ill she couldn't stand, let alone walk and there was no choice, so in a way we were catapulted into it... it certainly wasn't a conscious premeditated decision.

Positive so sorry DD is not so great and finding college a struggle ..life is so unfair sometimes

Hugs guineapiglet I have days like that too - moving is always difficult without anything else to worry about.

Paed was really lovely,has prescribed melatonin immediately and is pushing the OT to see us more quickly - our appt at the moment is for 2nd November!

DD is tired now after having to go out this morning but seemed reassured by what the doc had to say,

Take care all, cuppycake xxx

cuppycake glad all went well for you today and you had some positivity! Lets hope appt comes quickly, November is not that far off. Thanks to all for quick responses and ideas etc,chocoholic thanks for all your in depth answers to my questions, if I have been tactless I am sorry, I did not realise how your decision was due to the severity of the symptoms, I guess I look at daughter NOW, but realise that each day is different, and we need to think about alternatives if her chosen path has to be redirected. You have given me a lot of food for thought, I guess I had never faced up to the fact that she may not be fit enough to continue as she is, but actually, so what if she has to miss things at school, getting her back to fitness must be the priority. You have all been brilliant, thankyou :0

positive I missed your post earlier, its so hard when teenagers want to be teenagers, dd can be so bloody minded sometimes - then has a crash that lasts for day.

I really hope your dd is okay and that this is just a temporary setback,

hugs - cuppycake xx

Guineapiglet you were not tactless ..it's no problem at all ...we have totally moved on from that point now and things are much better even though realistically she has still got a long, long way to go.
Cuppycake glad the paed appointment went well and you have melatonin ...tough things in life can be faced much better if you (and DD) have had a good night's sleep!

OK - so one good nights sleep = dd thinks she's cured, overdid it yesterday and now can't move! I thought she understood that the sleep was only part of the problem and she'd still have to be really careful but she's been getting so frustrated about all the stuff she can't do.

Now her dad is going to be stroppy with me because she can't get up and doesn't want to go and visit him for the day :(

One step forward and two steps back, another typical ME mum day then.

Hugs to you all, will try and post again later when I'm feeling less bleaghh - hope all the dc's have a good weekend and that their mums do too :D

love cuppycake

cuppycake - have you had a look at the Great Ormond Street stuff on Chronic fatigue? Is quite helpful and you may want to print it all off and thrust give it to her dad!
You are describing textbook symptoms. I don't think we got anywhere until we had to learn to accept that this was what it was like. You cannot predict how a dc will be and they can't force themselves to feel okay. I used to try to tell my dd to take a tablet, take a deep breath and get on with it. How wrong was I. That was a hard lesson but once I learned it, things got better. Dd's counsellor once asked my why dd would choose to be off school if she felt okay. Good point! Why would our dcs choose to feel too tired to do most ( I put most in on purpose) things if they could help it!
What I am trying to say is that we all know where you are and it is SO hard.

Although, having reread your post, I think your problem is dd not accepting it yet! I think positive is a real expert on this. My dd didn't seem to fight it all. She just wilted very quickly.

Guineapiglet - giving up stuff at school feels like the end of the world at first but it isn't. I am not sure if I said, but dd went from 10 gcses plus an as to 6. She got 6 passes and is now in sixth form. She hardly went to school - had great support from teachers and lots of emails plus hurray for cgp guides and got there. There is a big paper trail between us, paeds and school to support it and it will be referenced in her ucas form next year. She just did stuff when she could. At her worst, she was not even reading (is a bookoholic!) but now is always in a book or on laptop.

Thank you dwardle, For the most part dd is pretty good about accepting her limitations, she always does push herself hard to please her Dad though so it's not entirely his fault that he doesnt always understand how poorly she can be.

I hadn't thought to check the GOSH website for ME so I will go and do that now,

hugs

Cuppy cake xxxx

DDs are with their Dad this weekend and I have done nothing but eat and sleep! I slept through church this morning - didnt wake up till eleven O'clock. I guess I hadn't really noticed how little sleep I've been getting lately :D

Hope you're all having a good weekend

Cuppycake xxx

Dear All. Thanks for posts over the weekend, and for further support about the school issue and learning what is enough for daughter to handle etc. Hope everyone has had a good weekend! We have been busy with Son's birthday ( hes 4 years younger) but in the meantime daughter has been complaining of all the symptoms of previous 'virus' which knocked her so low last year - headaches, sore throat, high temp etc - so three weeks back at school and I am petrified we are now getting into some kind of 'pattern' - she simply has no resistance to anything. Been to see doc today, a locum, who wants to repeat blood tests, but says that virus is likely to be 'standing alone' ie what she has at present does not connect with what she had in May.... I explained about the chronic fatigue she is experiencing.. I am sure many of you will relate to this, and the frustration at having to go through everything again, over and over.
We see her own female GP on Thurs and I will push for referral now I think so that this pattern does not take hold. IF anyone has any further thoughts or ideas please let me know as am feeling rather inadequate. Will contact school again as well, so as you say there is a trail of medical notes to refer back to. Step by step eh!!? Love to all hope your weekends have been better. Horrible time of year. XXXXXXXXXXXXXXXX

DD seems to be quite good today, managed to get her out to sit in the sunshine for a little bit today.

I'm feeling very depressed and weepy at the moment, its really hard for some reason. I think I'm having trouble with the sudden realisationt hat having a diagnosis does not equal having a cure.

I lost my mum last year and she was a very knowledgable and experienced nurse and I'm feeling more and more lost without her. I feel guilty for going out and leaving dd even for a short while, even though she doesnt want to come with me and is quite happy with being on her own for a bit.

I'm 40 and I still want my mum - how pathetic is that?

Not pathetic cuppycake. I don't know how I'd have managed the last year without some key family members. It's all much harder to deal with than we expect, and some days it just about knocks you over. Big hugs. I'm glad your dd got outside for a bit in the sunshine. I hope tomorrow is a better day and you all have a good nights sleep.
positive How are things? Thinking of you. Choc how is your dd? guineapiglet I'm sorry your dd isn't so good. I hope that your GP is helpful on Thursday and you can get out of the frustrating loop of inconclusive doctors appointments. I think you are right to push for a referral to someone else. What area are you in and do you know where the specialist CFS services are? I think we've probably all been in your position and it's very tough. Feeling inadequate is also a very familiar feeling - you sound as if you are doing all you can but it is awful watching our children struggling. I hope that tomorrow is a better day for you too.

Hi All
*Katsh" DD is doing pretty well, she had a great time at Avenue Q last night. This morning she is tired but OK ..fingers crossed it stays that way! How is your DD doing?

*Guineapiglet" Katsh is right, you really need to push for a referral. I second doing your homework before to see the GP. Find out who is in your area - do you know if you are near any of the specialist teams? Not sure if they will insist you see a general paediatrician first (guess it is cheaper than a specialist). Hope DD is picking up a bit.

Cuppycake sorry you are feeling low, but it is totally understandable, particularly since you lost your mum last year and know she would have been supportive. I think when things are bad you always want your mum, however, old you are. I think it does make it easier if you have good family/friend support and being on your own and also having to convince your ex makes it anotherload harder. Do you have any understanding friends in RL you can offload to? I have to say, it does depend on the luck of the draw here as sometimes the one you think will be brilliant at understanding, just don't get it. Anyway, hang on and keep posting ...we are here! Don't feel guilty about popping out, you wouldn't if she was well and she doesn't mind. You need a little bit of space - it is important you look after yourself!

aargh! only managed to succeed in getting one bold name out of three there ...can't type this morning. Have a good day everyone!

Dear All, thanks for all the postings, what a supportive group you are! cuppycake - your message rang true, and hope you are feeling much stronger. Our Mums are so important, and their supportive, totally unconditional love is what we all need and want to pass on to our own dear ones. My mum was very touch and go at the beginning of the summer and it affected me so deeply and painfully, thankfully following major heart surgery is now making recovery...but I feel deeply for you as Mums are absolutely irreplacable. What I dont understand is why we have to deal with a hatful of 'stuff' all at once, with our children's health being the most important and most demanding of us when we are at our most vulnerable. Does it make us stronger?????
In a philosophical mood today! Thanks to everyone else too about a pathway through this. Drove daughter to school today as she had PE first lesson, had a brilliant talk to her head of house yesterday who told me she had Glandular fever whilst doing GCSEs and was very supportive and helpful. Hurrah!!
Love to you all, going out into the first sunshine for 5 days!!!!!! XXXXXXXXXX

Hugs to you all, you are so understanding and supportive. Dd does seem to be sleeping a little better with the melatonin - 12.30 last couple of nights rather that the 2.30 it has been lately. If she's sleeping then I sleep so am more able to cope.

I've started handing over some of my responsibilites for outside things like running the draw for harvest festival and I don't feel quite so stretched out. Guineapiglet you are right when you say our dds health comes before everything.

Am going to borrow a wheelchair on friday so I can take her to creative stitches - we go every year and she loves it so much but I know she wont be able to walk round. However its a positive that she says she will use a chair there because she wont anywhere we are likley to meet her friends.

OT appt came through today for next monday so things are starting to move forward.

Love to all the Dds - I am very jealous of your dd choc, I love Avenue Q.

Take care all, cuppycake

Oh Cuppycake - how I empathised with what you wrote. My Mum is also no longer around and I miised her advice SO much - and her unconditional support and love for my dd.
You are in the right place on here though.

Totally agree with Choc ... but what is Avenue Q?

Sorry for going AWOL for a while.

I have had a bit of a health scare myself going on for a month or so. I had a lump in my neck which seemed to have the doctors jumping up and down about. At the start I was just hoping for some antibiotics to get rid and get on with life, but I had to have biopsy, MRI and lots of prodding and poking. I received results yesterday that nothing sinister, but a benign lump that is now infected, so yes, I finally got antibiotics and can think about something other than what might have been whizzing around my body!!

i have had a quick read through the posts, but please forgive me if I have missed anything.

Cuppy So much of what you type is just like my DD. Your last post about the wheelchair especially. DD refused to get into a wheelchair or even look at one for months. WHen she was unable to even stand we did get one for her, but we had strict times we were allowed out (when friends were at school) and only to certain places. She would like us to take her to a coffee shop half an hours drive away where she could sit in her wheelchair and watch the sea. It is always full of people that are at least 80 and the ratio of wheelchairs was really high. She felt as if she fitted in there, which I thought was really sad!!
We had an incident where she was in her wheelchair in a supermarket and the lady at the checkout was trying to be really nice to her, but was actually being a tad over patronising. DD hated it and since that day refused to go into the wheelchair and even refused to have it in the house, even though it meant she was unable to go out other than us lifting her to the car and not actually getting out of the car wherever we went. Bad times!!
BUT that attitude, I am sure, has got her back on her feet and doing so well so quickly. DD was severely affected. At her worst she was totally sofa bound for months - she was got up every day out of bed as I felt that it was important for her. We fed her. She was very nearly tubefed when she choked every time she was fed. I will shut up now, I am not trying to frighten you, I want to reassure you as she has now come so far. There is another girl who lives nearby who has CFS/ME. She has been bad, but not quite as bad as DD was at her worst, but has been like it for a couple of years now. The difference I see is that she has just given up and the mum has given up and to me, I feel as if her illness has won a huge battle. She is now in Great Ormand Street having help and doing ok.
Sorry, I am rambling!!!!

I need to go now because I am meeting a friend, so will have to come back later.

Just a quick note on how DD is now. She is really happy at college and seems to be OK with the reduced timetable, so far. We did have a MASSIVE breakthrough moment when she admitted to her tutor at college that she felt she needed to do less and so be able to stick at it, rather than push herself and crash out totally. This was the first time in two and a half years that she has actually admitted she needs to slow down. I think she may have finally grasped that she is not well!!!! Wow just as we are coming out the other side of this!!!

Have a lovely day everyone and I will come back and try and be a bit more concise later.