positive - I hope that you have had a good night out. I'm sorry that you and dd3 are having such a hard time. I can understand the desire to name change but I think your current one is so good. It always encourages me to be more positive. Please come and do your thinking on this thread - it's such a great outlet for the things we can't say elsewhere, and it allows us to try to give you some support, in the same way that you are always there to support us.
I hope that tomorrow is a better day for you all.

We are still muddling on. Reduced school to 2 x 1hr 20 but I think dd is still really struggling with it. I have (finally) as you have all advised, started trying to keep a detailed daily symptom diary. As an ex-lawyer it feels like trying to put a case together for the EWO in 3 weeks time, so I'm taking photos as well, so that I can see the change between good and bad days.
DD had play therapy this week, and loved it! She said she had so much fun she nearly forgot that she had CFS . For that alone it's worth doing.

Thank you so much for your positive comments. I am only on here quickly as we are off out tonight and I have to go and get ready, but I just read your posts and wanted to say a huge thank you.

Dd was well in the summer for a few hours at a time and we all assumed that this would just increase. I really can't understand where things have gone so wrong again. She does not seem to have any pressure from education. She loves going to the specialist unit and is attending just 2 sessions one hour each per week. She has always pushed herself too much and had wanted to go full time, but agreed that the daily sessions of 1 hour 10 mins was too much. What I don't understand is that what we see is the only pressure is from herself and her frustration at not being able to do what she wants to do, although in a way she has now given up making plans. She used to plan to see friends, but would have to cancel at least three quarters of the time because she could not do it, due to feeling so fatigued, sometimes by actually getting dressed to go out, she could not go out as all her energy was used up. Her life is all within the house apart from the education sessions.

Sorry, I didn't want to come and rant again, I am just "thinking" on here, I suppose. My DH is brilliant and very supportive. We are both quite organisers and hate the idea that this is totally out of our control. 21 I laughed at your description of spreadsheets, because this is exactly like DH. I have had to stop him doing it because it was becoming nearly obsessive with checking times and energy levels and staring at his charts for ages. I am sure that wasn't too healthy!

I feel so sorry for our other DCs. They seem to get teh wrong end of DDs frustrations a lot of the time, especially DD2 (closest in age). I think this probably has something to do with DD3 perhaps feeling a little envious of her social life and the fact that she can still do everything that DD3 has ahd to give up. I have noticed that when DD2 has had a sports event which DD3 would have been in she is particularly nasty to her. Also, if DD2 goes out with friends and DD3 is feeling low. I have broached the subject with DD3 and discussed that maybe she might be feeling a little envious, but DD3 won't accept that.

Anyway off out for an evening, so thank you all once again. I will feel positive again. DD WILL get better.

Hope your weekends are going well. I love to hear how your DDs are all doing, it gives me hope, so please keep posting.

Positive - sorry for the abrupt finish there, but their needs are always greater!!

I am so sorry that you are feeling so down and I understand your feelings and frustrations, I have been exactly the same and know how desperate it is. DD was always very accepting when she was feeling fatigued, she never fought it, but when she felt better she never believed she was going to be ill again. She certainly believed in the homeopathy and always said that it was the one thing that helped her. Maybe the placebo effect has something to do with it - the mind is very powerful and our thoughts and feelings can definitely affect our health.

I always felt that LP was the way to go but it obviously wasn't for our DD, and it isn't for everyone. I know that Optimistic has said that because their bodies are changing so rapidly anyway, they will get over this naturally, and I think there is a great deal of truth in that.

Looking back at the diary we kept for DD and all the spreadsheets that DH made up for planning the pacing etc I can see that we were always careful not to push her to do anything that would make her feel worse. That means that if a few hours school left her exhausted and having to rest then we would stop and reduce it to something she could cope with. The problem with all of this is that it is a long drawn out affair. At one time we did consider taking her out of school altogether and resting her up and then getting her back in the year below.

One thing that does stick in my mind is how well your DD was during the Summer. I remember your post about her going bowling and how vibrant and glowing she looked. Think about that - are there any clues as to why she was well as opposed to why she is ill now. Can you work from that, does it give you anything to go on?

I apologise for rambling but hope you can get something positive from this,

Positive - Hugs to you. No we didn't do LP, but as well as pacing I first took DD to a herbalist and then after she crashed even more severely (following the flu jab) we started homeopathy and CBT.

The CBT was on the advice of our consultant as we could see a pattern of worse symptoms as soon as the pressure and stress became too much. CBT helped but didn't really do it all. From our perspective it was a case of removing the main problem (school) and then building up again slowly. Indeed even at the end we had to take her particular school out of the equation in order for her to completely recover (not just because of the school work but because we dug really deeply and found small problems that we had previously been unaware of). She is now enjoying what seems to be a perfectly normal life and - importantly - is dealing with the normal everyday pressures that she comes up against.

DD still enjoys monthly chats with her homeopath which I do not attend but which give her someone to let off steam to. The homeopath is someone I have got to know well and she doesn't attempt to counsel DD but it all helps in some way.

I hope this gives you something to think about. They are all different and will find different ways of recovering. I think that removing the pressure is key, and a friend who regularly speaks to Prof Findley says that he preaches that all the time.

Have to go as DH needs the computer, beback later.

So sorry you are feeling so low PAO. I know how desperate it can feel - I've been there too.
I don't have any answers for you but just wanted to send you hugs and loads of support.
The only thing I would say, and I'm sure you know it, is try not to look ahead too much. There's no point and it just makes everything seem so much worse.
It's great that you can have an outlet on here though so don't stop if it helps.
Your DD will have a good and fruitful life you know just maybe not in the way you expected for now...

Have a happy and peaceful weekend.
x

Hi all,

Hi Choc - How are things going with Perrins? I am now looking at options as DD is slipping and is very reluctant to even consider the LP. - DH against LP too, so feeling as if I can't really push too much more in that direction.

21 - sorry for my memory loss, your DD didn't "do" LP did she? Did you just take it a step at a time, or did you use any other methods, treatment etc?

Katsh - How are things now? Has school been reduced, how has that gone? I hope you are still getting the help from the volunteer. She sounds like a gem!

I hope everyone else is doing OK.

DD3's statement review is next Thursday at the school. Feel a bit like Daniel going into the lions den, but paed is coming too and I know she won't put up with any of the usual shananigans.
I think I need a name change to give-up-on-being-positive-this-is-just-crap-and-I-am-fed-up! One year on since DD went into school for the last time. I know she has vastly improved since the first 5 months of the year, but the tunnel seems to be going on forever and the light getting dimmer and more distant at the end! Will we ever pick up the pieces of her life again? I know she won't ever go back to the life she had and I just see all those dreams and hopes she had for her future just being washed away one by one and nothing replacing them. Where on earth will she be in a years time, in 3 years...? It is all going to be so hard for her and it all seems so unfair. She has really struggled all through school due to dyslexia and dyspraxia and the one thing she succeeded in and felt confident in was her sport. Now she says she will never do any sport again. She can't do the course at college she wanted to do next year because she wont have acheived the entry level of education. I can just see her struggling for many years to come, even when she is fit and healthy.

Sorry a bit of a negative post as that is how I am feeling.

Hi to all - I do hope you are seeing some improvement.

Dwardle - sorry to hear about DS! My DS1 broke his metatarsal 4 weeks ago and is going back to rugby this weekend!

PA - about your DD for you and the crappy school you have to deal with. Sending you hugs and good wishes for some improvement soon....

Happy Birthday to Dwardle's DD. Sorry to hear about DS' ankle. Your family are really not having the best few months are you?

Hope this week has been better for you KAtsh, too. How often are you seeing the therapist?

We survived another meeting with mrs CBT. DD and I sat and discussed how to play it before she arrived and it was ok. We didn't give an inch!! Felt very assertive and for the first time I felt in control of the meeting and ultimately in control of DDs plan.

DD is slipping badly, some bad days and some not so bad and a few passable days. That is about as far as I will go at the moment. Reducing the schooling has made a huge difference yet again though and she is not quite so likely to explode at the slightest thing!

Would you believe me if I said that the school have messed up yet again and have not told half the people about the final change of review date, so half professionals are going this week, and us and a few others next. That place could not organise a **up in a brewery! - or maybe it is because they do organise so many of them, they are so useless at everything else!!

Must get off now. Teenager in need o comp for msn "homework" . Hope you all ahve a good week.

Dwardle Happy Birthday to your DD and I'm glad she had a really good weekend , but sorry about DS's ankle I hope it heals quickly .