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

(549 Posts)

Nice sparkley new thread for us! grin

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

"Old" members include:

PositiveAttitude - Me! wink
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! grin

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. grin

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

optimisticmumma Wed 10-Feb-10 17:01:29

PA - sorry DD is bad atm. But...she has bounced back to a certain degree very quickly so that's great!
Managed to persuade DD to postpone HPV jab until Sept even though we had a big row first!! LP trainer very good and said that if she wasn't 'doing' CFS ( sorry - LP speak!)then it would be fine and she was no more likely to react than any one else,but I just had a gut feeling not to do it. Just call it mother's instinct I suppose.

twentyoneagain Thu 11-Feb-10 14:31:32

I think that if someone is perfectly healthy then jabs are ok, but any doubt and they should be postponed and you have probably done the right thing OM. We should all follow our instincts more often.

katsh Thu 11-Feb-10 14:37:33

Hi all. Positive - how is DD today? I hope that she is still coming up from her dip. Optimistic, sorry you had row with dd, but sounds like a good decision. There is no point arguing with mother's intuition! Dwardle, 21, Choc - hope everything ok as it can be for you all.
Thank you for your encouragement to appeal the DLA - I have just posted off my 5 page reasons document. It just took some solid concentration to get it done. I am, however, still amazed at how angry these things make me . Why can't the person reading the form realise that dd is a million miles away from a "healthy" 7 yr old ? Anyway - tis done smile.
I had an amusing experience yesterday, in retrospect anyway. My GP had given me a counselling referral back in July, and I got my 1st appointment yesterday. I thought I'd go even though I am much more together than I was immediately following dd's diagnosis which is when the referral was made. Well, I won't be going back - the counsellor was so busy telling me about all the people she knows with CFS, or the friends of friends who have known someone who had it, that it got to the point that she would ask me a question and then interrupt me to tell me another of her stories grin. Thank goodness I was feeling robust enough to cope.

It's this weekend I'm going away to see my parents, so I've quite a bit to sort out to manage that and I really must go do it!
Hope you all have a good weekend and half term.

chocaholic73 Thu 11-Feb-10 15:01:12

Katsh ...it seems to me that nearly everyone you meet knows someone who knows someone who has ME and then proceeds to tell you how that person is doing fantastically...but a professional counsellor doing this really takes the biscuit!! It's really great that you were able to keep it all in perspective. Hope everyone has a good half term.

dwardle Thu 11-Feb-10 22:01:21

Message for OM but everyone really!
I could really do with having a bit of a discussion about aspects of LP and my stubborn daughter but it would not be appropriate on this thread .confused
Feel it would not be fair on those who have not done LP.
Would the answer be to have another thread just on LP?
Advice pleasesmile

katsh Thu 11-Feb-10 22:03:26

You know that if you have another thread we'll just come over and read it wink

dwardle Thu 11-Feb-10 22:50:54

This is true!

nickschick Thu 11-Feb-10 23:49:22

Hi smile - can I come in?

Oh Dwardle I would definitely hop over and be nosey! read it. Being someone who regularly contemplates LP, I want to know ALL aspects. Good and bad.
On the other hand, if you dont want us all reading, then I understand.

How is everyone? Hi Nickschick.

DD spent 15 minutes yesterday telling me that she is now 100% well, that she is not ill and can do everything she wants to do. hmm This was while we drove to a shop, went in and bought a couple of bits then straight home. Out for maximum 30 minutes. By which time her legs were jelly and as soon as we got home she was crashed out on the sofa moaning that the cat was breathing too loud!!! hmm hmm A sure sign that she is truly well - I think not!! Did not recover for the rest of the day. We have certianly gone back to the boom and bust, but it is so hard for her when she wants to be a normal teenager for a short while. Oh no I can hear Mrs CBT. I really cant let her be proved right! Thinking I may have to revert back to the red and yellow energy counting. BUT I dont think i would get DD on side now. SO hard! Sorry for rambling......

Have a great half erm everyone.

twentyoneagain Fri 12-Feb-10 14:00:38

Dwardle, I agree with Positive and Katsh, we are happy for you to engage in a conversation about LP here, if you don't mind us all reading grin.

Welcome back Nickschick it is good to hear from you again, join in when you can .

Positive - it is so very frustrating but remember DD has still improved hugely compared to when you first joined this thread. There will still be ups and downs but she is getting better without doubt. My DD was just like that, always insisting she was better and would not be ill again. It can't hurt to be determined like that.

dwardle Fri 12-Feb-10 19:50:55

gringringrin
dd has been into school for every lesson she had this week!
PA - take comfort - it will happen - totally agree with 21 again.How was dd today? Do you - or dd- keep a diary? Sounds from your thread that her down times are lasting for shorter amounts of time and she is having more positive moments? Did I mention that dd's paed read us her notes from a year ago. I was quite shocked - had forgotten where we were then.
I think she HAS to have times when she is a normal teenager
Thanks for your responses about LP - just did not want to do something that you would not want. Awaiting your response, OM!
Katsh - hope your weekend goes okay
Hi Nickschick.
Very shocked shock shock about your counsellor, Katsh - but a huge well done for putting in the DLA appeal.

nickschick Fri 12-Feb-10 20:17:29

Hiya ....thanks for welcoming me back smile.

Everythings still the same here some ups lots of downs but ds 'thinks' hes managing better bcos he might manage 3 days in school but he comes straight home and sleeps until 9 can barely move and even has had to resort to eating cheesey mash in his bed bcos he cant move or even muster energy up to eat....then he might be able to manage a bath then hes back in bed until 7.15am sadsomedays school ring and we have to collect him.....this isnt living,this is half managing and im afraid its only gonna get worse,hes cut off his friends and will only chat on occasion to friends on msn.

optimisticmumma Tue 16-Feb-10 09:06:00

Dwardle - I am so sorry not to have responded but was away for a few days with no computer shock! I don't mind discussing LP on this thread if everyone else is happy about it! Ask away - although I am away from Wednesday to Saturday which is entirely unhelpful of me I know!!
I will keep checking the thread today though and see if you're on!

Nickschick - it's so nice to 'see'you again although your post made me so sad.I know precisely how you feel.What school year is DS in? I'm sorry i can't remember. Unfortunately, CFS/ME seems to be a vicious circle until you break it, but you know he will get better. If he's managing three days at school that is good you know. We ended up doing LP because at the end of year 9 the school quite rightly said that my DD could not go forward into GCSE coursework etc without proper provision. They wanted her to have home tuition and that takes a while to organise. She was so horrified that, having been fairly anti LP, she had a complete change of heart. Anyway the rest is history!

A couple of things I keep thinking about is that 75% of people with CFS/ME make a complete recovery in time. Secondly Dr Crawley mentioned to us that she thought that in 5 years time CFS/ME would be broken down into more that one illness. The consultant at GOSH siad that moderate ME takes 2 years to recover from. Those little nuggets are intended to make everyone feel better!!!! Apologies if they don't!

My feeling is that it took my DD 18months to shift symptoms ie headache/pain /temp etc and that after that she was left with what I call emotional fallout. She just couldn't 'see' how to go to school without feeling ill etc. She had lost all confidence in her physical self. That is where LP came in and which is why it can be described as enhanced CBT and why CBT can work well too. Now, if she has any illness/stress etc she uses the skills she learned on LP to deal with them if she can. This doesn't mean she has a perfect, problem-free life it just means it is a normal one with all its ups and downs...

Oh dear! I've given a bit of a lecture haven't I? Please take it in the spirit it is meant - one of care and concern for all the DC on the thread.

have a restful half term ....

I hope you are all having a good half term break.

We are majorly doing the boom and bust here. How do you tell a stubborn determined teenager that she cannot do what all her friends find easy!? sad

Yes she does bounce back quicker than before and yes we are far better than for the first 6 months of 2009. I must keep telling myself this!! The future scares/frustrates me though....

Dwardle Please come back and ask those LP questions. I am interested to know the good and the bad.

dinamum Thu 18-Feb-10 16:29:27

I pop in here now and again and it just reminds me of those dreadful days.

Nickchick reading about your poor son - I know just what it feels like for him and PA the telling yourself you are better now and then collapsing for the fext few days been there done that!

Re LP for me it was certainly what turned things around. I was at the crashing stage and had not got out of bed for 9 months and not sat up for 6 months when the practioner came to my house. She talked for an hour (I had not talked to anyone for that long but was able to do it). Gradually doing LP I was able to get out of bed - it took me 10 days ( but I have always been a slow starter!) and went to the seminar 3 weeks later. I think it took me longer as I was very very anxious to avoid a crash.

I was very sceptical and to be honest it did take me a while to get the hang of it but each time I did it I began to see the benefit. Sometimes I did LP in anger almost to prove the LP practioner wrong and that if I did what she said and would still feel rough however the outcome was that I felt better!

For me I learnt that the times I did not want to do LP were the times I most needed to do it. Can I say that I found it boring and felt that (by this time I had been to the three day seminar) that talking about it and paying the money should be enough to get me better!

Eventually after about 8 months after the seminar I realised that despite myself I was getting better and that even my half hearted attempts where helping. So then it clicked for me and there was no stopping me.

However I do still fall into old patterns of thinking and behaviour but I recognise it deal with it via LP (and do not get ME symptons)

I know it is hard to do and it is like getting fit just buying the fitness DVD is not enough you do actually have to do it but over time you see the benefits and it is great.

I do wish all of you well and that you DC could get better NOW but honestly if I did it they will.

PA do think about the future - there is a future and it will be great . My dr said to me that my life would never be the same again and I had to prepare myself for this, rubbish, honestly it is getting better and better all the time. I really could not imagine that when I was lying in bed unable to talk or eat.

Thank you Dinamum for your lovely post. You have made me cry after a very bad day with DD3.

Always tomorrow....

twentyoneagain Sat 20-Feb-10 13:39:03

Positive - so sorry you are having a hard time and that DD is suffering so much. I know I wept buckets at times over DD and here are some (((((hugs))))for you. Dinamums post is lovely and it helps to hear from someone who has been through this and understands exactly what our DCs have been feeling. Are things any better now?

Thank you for the ((((hugs)))) 21again.

I just popped on to post that DD is having a good day. She went out last eveningshock for nearly 2 hours and is still goodish today, which is great!. grin

I thought I would come on here and post that, just so that I am not always posting when we are down! smile

We had a good long talk today about her future plans and what she may be able to manage, too. She was a bit down about the fact that she may not be able to do her course due to lackof qualifications and experience. I think I may broach the subject with the education unit of her not particularly increasing her time there too much more, but instead using her time increase to get some experience in the area she wants to go into at college. She is not doing any exams in June, so it is not as if we are losing out study time.

Have a good weekend everyone. smile

twentyoneagain Sun 21-Feb-10 10:36:38

This is so good Positive - DD is improving and she is getting used to feeling better. The steps she will be taking will be getting bigger all the time. One thing I found helpful when DD started improving like this was to change her bedroom round a bit. We bought new linen and tried to change it from being her "ill" room to a fresh new place - just a thought . It sounds like a good idea to talk to the unit about her time there. Sorry if you have already mentioned this but what does she want to study?

dwardle Sun 21-Feb-10 11:40:25

Hi everyone - good to read everyone's posts and esp pleased that you had a good day, Positive.
Dinamum - I found your post SO helpful and have been thinking about both that and the other posts.

My qs about LP were to do with thinking in the first instance that if dd had still got symptoms and difficulties, then she had somehow failed at LP. Now, having read what OM said and Dinamum, I feel that a whole different slant needs to be taken - I am waiting for the right moment to get dd to read these posts because I think she has sort of given up on LP because she was really struggling. OM's post really helped here too. I did not want to post because I did not want to seem like I was questioning LP - I am not at all - and remember I sat through the whole programme with dd. Now I see that dd just needs lots of support to continue to use LP on her troublesome areas - which is a feeling of being overwhelmed.

I sometimes wonder if we should have pulled dd out of school altogether and taken this stress away - but then I look at her. She has had a great week, completing course work, working on her art exam, spending hours on facebook/msm and doing all the other things that a teenager does and I am sure that we are on the right track and so nearly there. She has been very excited about A level selection and talks about it as a given - she will be in 6th form. So I think that we are treading a very narrow path BUT we seem to be on it still. She is so much better than a year ago. I know you will all understand this phase as you have all described it at some point in our threads. Positive, so have you, even though you may feel you are less far down the path than some of us.

So - my big Q is - how do you get a dd to keep applying LP even when she is somewhat reluctant to discuss it? I do not want to nag her, she does not want to contact her practitioner and she does want a life she loves!confused

21again - agree about the bedroom too! This really helped, esp as dd did some of the work and all the planninggrin Not too costly. I love IKEA.

21agin - also agree about the weeping buckets. I longed for a 'normal' week - and got my wish just before half term when dd went to school every day and nothing went wrong all week!
Now I know it can happengrin

Big hugs everyone and thanks for wanting to be in on the LP chatssmile

twentyoneagain Sun 21-Feb-10 13:00:45

Dwardle - I know exactly what you mean and getting your DD to read these posts may be a help. I wish my DD had learned some of the skills that LP teaches, I feel sure that she would be able to benefit from it to deal with issues that she has now. I am actually seriously considering learning about NLP myself .

optimisticmumma Sun 21-Feb-10 15:10:43

Dwardle- just caught up on the posts and tbh there is no answer to your question without a bit of a 'row'! My DD is also sensitive about discussing LP but I just kind of sya 'what about doing LP?' and then run!!!I think that's all you can do. HTH

dwardle Sun 21-Feb-10 17:46:14

Yes it does help - glad it's not just me who sometimes has to take cover! Also v useful to know your dd is a bit sensitive about it too!
Thank you!grin

nickschick Mon 22-Feb-10 23:32:20

Hi there - we went for our usual round of blood tests again .....the nurse who took them asked me if we needed a wheelchairsad cos sam looked so poorly....after speaking to dh she thought he had leukamia.

She was really surprised when sam said no he always feels tired but today was a good day for him ....she then asked us what was a bad day like shock.

Sams in year 9 and supposed to be doing gcses early - i dont see it happening.

We are waiting for referral to a physio and the paed said shes going to investigate getting a 'fatigue specialist' to look at him.

We dont do L.P or any other form of monitoring his energy (we havent been taught and hes v anti cfs)so i do say things like 'think about it'etc etc.

I dont know about the 2 year thing hes been like this for at least 5 years.

hope everyone is staying on an even keel.

chocaholic73 Tue 23-Feb-10 11:24:06

Nickschick - have you thought about asking for a referral to Dr Crawley. She does home visits anywhere in the country. It is a one off but it really got us started on pacing and got DD out of bed (at the time she couldn't walk at all) and slept in our front room. I think she is able to put it across in a way you possibly couldn't. I don't think with your DS being so much in denial that you could possibly do LP, Perrins or anything else as you do need co-operation!! ..but a 1 off visit from Dr Crawley who will then talk to your local people might really help.
Hope everyone's having a good day.

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