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.......

[nickschick]

Hiya .

Ive just had a quick read through .....some ups some downs but nevertheless we are all still here.....

Ds is on his 3rd full week in school!!! great I know but to compensate hes sleeping as soon as he comes home,got to ring hospital today -still not heard from them with regards to last lot of tests.

Hope you all have a nice weekend.

[PositiveAttitude]

21 - so pleased to hear that DD has bounced back well. Long may it last!

Nickschick - 3 full weeks, thats amazing. Pleased for your DS.

Now dwardle, the same day that you announce you have a new job I discover that a new head has been appointed at DDs school. Co-incidence?

Right, well, I didn't want to come and whinge and whine yesterday ... and to be honest I was too upset to post anything on here. So here goes .......... The interview was horrendous. It was more of an informal chat about the course, but we came away from it with DD having had all her hopes and dreams for the future crushed. No way will she now do that course. She has had to re-think the career that she has wanted to follow for the past 10 years - childcare and basically back to the drawing board as to what she may do next year, or in the future. I now feel slightly more relaxed after making some phone calls today to some organisations and asking if they would EVER consider employing someone who had no qualifications and had no proper schooling after year 9, with dyslexia and dyspraxia to boot!! Encouraged by not being laughed at and actually most people were really positive. I dont think my days of fighting for DD3 are over yet. She is such a lovely girl and has a huge amount of personality and sunny nature. (most of the time!!!!) She is great with people and I just hope we can help her feel good about herself for the future. Appointment on Monday with the Connexions guy, so another round of discussions, i just hope he maybe a bit more positive and productive.

Have a good weekend everyone.

[Chocaholic73]

Congrats Dwardle. Glad DS is managing school Nickschick and that DD has been enjoying the sunshine Katsh. Hello everyone else.
Positive - sorry things didn't go well for DD yesterday. It is heartbreaking when things like that don't work out. Hopefully Connexions will come up with something. They have all sorts of contacts and can probably also arrange more flexible arrangements with colleges than parents can. I think I gave you details of DDs online learning. Through a completely different set of complicated issues with my DD2, she has been using an online school for the past few months (she will be going back into "proper" school soon). If you're interested, I can give you details. Hope everything works out.
I was thinking it'd be nice to do a "roll call" of who and where we are (not exactly) and I'm hopeless at remembering this sort of thing - what do you reckon?

[optimisticmumma]

Good idea, Choc...

Positive - so sorry you had such an awful time! Your DD sounds wonderful and things will work out. You have faith and I believe that things work out for thebest in the end - just difficult when you don't know where the end is. Now a question. Is it time to bring up LP with your DDagain and try to get her to be openminded and have a chat with a practitioner? As her dreams are being systematically crushed is now the time to say 'sod it what have I got to lose?'. She can still be cynical about it and disbelieving but....??

Nickschick - so glad your DS has had a good 3 weeks - hope it continues.

Hi to everyone else...

[dwardle]

Hi All,
First of all, Positive what an awful experience for you and dd. Are you feeling any less stressed? Choc's suggestions seem very helpful. Was part of the childcare prob gcses in eng & maths? Rules are SO inflexible - yes of course we want our children to be cared for by the right people, but it is about so much more than qualifications. Glad you have had some positive feedback. Hang on in there - I agree with OM about both things turning out in the end AND rementioning LP. dd is using it to help her deal with things in a positive way. She is definitely better as a person for having done it, in my opinion.

Great idea about a roll call. Shall I start?

Here goes.

DD is 16 and a half and has had CFS since Oct 2008, with a dodgy period a year before that. We live in the West Midlands.
DD has a Paed who has advocated pacing herself in a very low key way, cutting back on school, some graded excercise and most importantly viewing her in a holistic way. She has had support from CAMHS, mainly CBT from a counsellor and also Melatonin to help her sleep.
DD is in her gcse year (Y11) and has dropped from 10 gcses & an AS to 6. She was forecast As and A*s and I think she will come out with As and Bs in the 6 she is taking (inc art, drama, maths, eng x 2 and biology)
From Nov 2008 - Summer 2009, dd was hardly at school and just lay limply around the house.She was always much brighter in the school holidays but as soon as school started again, plummeted rapidly.
DD did LP in July 2009 and had a brilliant summer. When she went back to school in the autumn, she started to show a range of different symptoms - headaches, stomach pain - much of which caused her to continue missing school.The fatigue was not there any more, though. However, she has slowly made progress and now gets into school most days - but rarely for a full day as she has a short timetable. She does now have a social life!
At her worst, she could not read, concentrate and lay on the sofa all day with a white face.

Have I missed anything? Is that the sort of thing you had in mind, Choc?

[optimisticmumma]

Choc : This is us:
My DD is in Year 10 and is 14. She was diagnosed with CFS/ME in the summer of Y7 following a virus.
She saw Dr Crawley and we tried pacing. She hated it. At her worst she was doing 2 lessons every other day. A year ago she did Lightning process because she was faced with being home tutored and has been back at school (around 90%) ever since. She is still prone to illness and less resilient than her peers but she manages it and significantly does not have the fatigue which is the overriding sympton of LP. She saw a specialist at GOSH last summer who pronounced her well and was positive regarding LP.

[optimisticmumma]

sorry should have said: 'fatigue which is the overriding symptom of ME' doh!

[katsh]

ok - dd2 is just 8 and yr 3. She became ill last Easter following a virus, and was diagnosed with CFS last July. She hasn't been to school since November and has had a learning mentor at home x3 1 hour sessions for the last 4 weeks. We have the support of a nurse specialist, paed, dietitian and CAMHS through which she has weekly play therapy. We've been pacing ( rigorously at first and then more loosely) . We think ( hope) that she has been at her worst ( lying in bed looking grey, crying and saying that she'd got no muscles to lift her head and she wanted to die ). She is now starting to put on weight, has regained her appetite, and can handle interactions with other people again. I have a 10 yr old dd and a 2 yr old ds - 10 yr old has a nasty nerve disease which has attacked her leg and she cannot walk unaided and is getting worse, so I'm pretty much house bound apart from the kindness of friends and homestart And very importantly - this forum has made the difference between sinking and swimming in the past year. Thank you all.

[katsh]

Should have included - we're Surrey/ Berkshire/ Hampshire border

[PositiveAttitude]

This is us:

DD3 is now 15, 16 in June and should be year 11. Before her illness she was incredibly active. She represented her county (Isle of Wight) in their swim team and would train up to 10 - 15 hours a week. She loved cycling and just being active outdoors. She is very dyslexic and so she was proud of her sporting acheivemnets to compensate for feeling "thick" at school. (her words, not mine!!) She became unwell in June 2008 with a virus, later discovered to be Glandular Fever. Returned to school after a week, although not fully recovered. Sluggish through summer holidays and noticed a dramatic downturn in her health when she started back in September. Diagnosed with CFS/ME on first visit to GP. Rapidly went downhill and referred to paediatrician in November 2008, when she also went to school for the last time. (School were horrendous and did not believe she was ill at all!) Home tutored from December, but could only cope with 10 - 30 mins twice a week. Had a visit from Dr Crawley in April 2009. By this time DD was sleeping 20+ hours a day. Started a sleep deprivation programme and strict pacing. Worked to a point, but physically DD still in decline. Had 4 months of her being unable to walk/stand at all, we were feeding her and she was needing 24 hour nursing care. Complications such as her being unable to swallow due to muscles in her throat giving up and terrible circulation due to inactivity leading to black feet/legs.
After 4 - 5 months of her worst DD suddenly was able to stand again and has progressed well (ish) since then. Now attending an education unit which is fantastic, twice a week for one and a half hours a time. Able to walk around the house well most of the time and sometimes goes out with friends for a short time!
Trying to sort out plans for next year as regards education, but very difficult to plan how well she may be.

Right, now back to now....
Had another meeting with the connexions guy yesterday, without DD. He has said that basically they can only offer the course that DD is refusing! Reasons being that she could be ill again and really might not be able to keep up if she takes time off. At one point I didnt know whether I was going to lose my temper with him, or burst into tears. I managed to do neither, but am finding this really difficult because she seems to have absolutely no options. All her school life she has struggled and looked forward to getting to 16, when she would be able to do a course more "hands-on" and less academic, which is just what she needs. Now due to CFS/ME she is being told she has to do the academic stuff before she can do the next step. She is a lovely girl and I think life sucks for her at the moment. Although, I cant let her know that I feel so down about it all. I am trying to be up-beat and positive to encourage her that it will all work out fine, although I really cant see how.

Dwardle - Spill the beans about your new job.... please!!! >

LP question. Is a lot of the LP training about not thinking that you are ill and not accepting that your body will not cope? Is it about changing your mind patterns to think positively and therefore be able to act positively? - If you understand the question.

[dinamum]

I think LP is more than that Positive. It really is hard to understand but so simple to apply!

What it is saying is that certain patterns of behaviour are remembered by the brain and the "ill" person gets stuck in this loop. All of it is pretty much self conscious. If we all thought ok I am well I will be better now - that will not make us better. (Believe me I bet most people with ME has tried that!)

What it does it change the physical reactions to a situation that used to happen.

ME/CFS is my mind and my mind only(!) the body overreacting to a situation. So if I walked up stairs my body thought it had climbed Everest and reacted as such.

So LP trains the brain to tell the body that it does not need to react in such an extreme manner. Then symptons go.

Can I add that this is my simple watered down interpretation to help me and may not be how others have interpreted it.

I am a little reluctant to say too much as each persons interpretation may set other peoples brains reaction working in another way hence the so called secrecy regarding LP. It is so that other peoples ideas and believes do not get in the way of understanding it fully. I am not a practioner (as you can tell by my woely description) but they will help to explain it better!

It is such a shame that as your daughter gets better things seem to get harder for her. I do hope it can all get sorted out wish I had a magic wand

[twentyoneagain]

Now for us - DD is now age 14 and in year 10.

She became ill at Christmas 2007 with a flu-like virus, and just didn't seem to get over it. Many blood tests later DD was diagnosed by Paed as having CFS at Easter 2008.

She missed most of the rest of year 8 and although she seemed to get better during the Summer, she crashed again badly when she went back to school in year 9.

Following a strict pacing and management regime we got DD back into school in Feb 2009,just doing a small amount each day, and built her up gradually until she was almost full time in the Summer.

DD changed schools in September 2009 (year 10) to a less pressurised environment and basically I think it is safe to say DD is better.

I think we have been lucky in that DD was not as bad as some of the other DCs here, although at her worst she could not see or lift her head from the pillow.

We did use CBT for several months in 2009 and DD has been seeing a homeopath since January 2009 and still seems to value chatting to her homeopath even now.

[optimisticmumma]

Positive = in answer to your LP question. I think of it as this: My DD had broadband neuron connections to illness/ME and dial -up to health. It was a question of reversing that. Positive outcomes from the challenges set meant that she was building up success. It is too difficult to explain LP in a nutshell. All I can say is you are assessed as to your willingness to look at your beliefs surrounding illness etc and that the practitioners will not take money off people who they don't think are ready/able to give LP a good go. There is quite a lot of groundwork to do before you do the 3 day course...\hth

[dwardle]

Great explanations about LP!
The other thing about LP is that it is NOT saying your illness is made up - it is teaching you how to use your mind to help you get better - dd says it is about finding ways of dealing and coping. DD would talk to your dd if she wanted!
Job
Is in big primary school in another town! V exciting and challenging!

Positive - am so shocked and disappointed about your news about dd's course Want to ask more qs - is your connexions bloke good?

[PositiveAttitude]

Thanks to you all for the LP input. Lots to think about and look into. Not saying more than that at the moment.

Here DD has had a better week. She has come around a little more to the idea of college and I think we have both had a bit of a reality check as to how far she needs to go yet to be well.

A good meeting yesterday with social services - yes, I did say good and social serices in the same sentence, probably for the first time EVER!!! Makes a change after all the bad education meetings recently!

Only one more week then the hols

Hope you are all doing ok. Have a good weekend.

[katsh]

Hi all - Positive glad that dd has had a better week and that you had a good meeting.
I just wanted to let you know that we got our DLA . They read my appeal document and awarded it without us having to go to tribunal. Thank you all for your encouragement to appeal it. I felt quite emotional when it came through - I suppose it had felt like a big battle to be believed about the impact of dd2's illness. So now I can get a blue badge automatically and that will also make life easier. It came on a good day ( in a funny way) as dd2 had a very bad day today.
Anyway - hope you all have a great weekend.

[dwardle]

Hurray - am SO pleased for you about the DLA
Your comment about this thread was also appreciated - and reciprocated. I think this thread has made the most enormous difference to me too. Sorry you had a bad day with dd - you will but in time they will get fewer and (v bad english)less bad. Keep smiling. Think it is nearly glass of wine time

[PositiveAttitude]

Are you sure you haven't had a glass too many already, dwardle? Loads of 's!!!

Katsh - Brilliant news about DLA. The blue badge has made such a difference to us too. It makes it so much easier to go out and know that you can park close to the shop, or whatever. No money will make up for what is happening, but it is good to make things a little bit easier. We are very strict about what ours is spent on. Things that make life better and easier for DD3. Well done!!

Hope you are all well and having a good weekend.

[dwardle]

Ha Ha!
Positive - Do let us know about social services - am intrigued!

[twentyoneagain]

Katsh that is such good news, and it will make such a difference to you and to DD. I am sorry that she was having a bad day and I do hope she is feeling better today.

[PositiveAttitude]

Dwardle, it was only a more positive meeting than last time when the idiot gentleman asked if the reason that DD was only doing 2 days at the tuition centre was because she couldn't be bothered [and thump]!!!!!!!

This time had a very nice man who really seemed to be the first social worker we have seen with a few marbles in place! It was only a review meeting for the care that DD has. We have reduced the number of hours and were considering reducing more, but he suggesed we keep the number where it is, but just use what we want, in case we need to increase at a later date. He also was saying about her care when she is 18!!!! She is still not yet 16, so I was a bit , bu he explained that it would be beneficial to keep anything going if we need it, as when she is 18 they can tap into lots of different funds for her training and education wise. I think 2 years is a bit long myself, but then we are nearly 2 years into this now, so we will wait and see.

DD had a more positive talk with me today about the college course. Fingers crossed for Wednesday. If that goes pear shaped I will NEVER convince her again!!!!! (she's as stubborn as her mum, her dad--, a mule!)

Hope you are all good, and not too much red wine celebrating that new job now Dwardle. - not your own anyway, can I share?

Shout out to OM - where have you gone? You've disappeared from the other thread, too. Come back!!!

[optimisticmumma]

I'm here, I'm here!!
RL getting in the way!

[PositiveAttitude]

Just a quickie.

HiOM - Hope RL calms down soon.

DD3 went to the college today and came home really positive about it all and very much for doing that course!!
Thats one less worry for a while.

[dwardle]

Oh Positive - am SO pleased for you.
Why does Mumsnet not have a smiley for a hug?
Huge well done to dd.
Hi everyone - hope you are looking forward to Easter - have a good week! Am off to frozen north and out of internet range I think so may not be in touch for a bit.
OM - know what you mean about RL! Hope yours calms down a bit.

[PositiveAttitude]

HAPPY EASTER to all you special people on here!

Have a good, relaxed few weeks without any school stresses.