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.......

Oh - am so sorry - poor you. It's bad for all of you. Am trying to think of anything that might help

A holiday in the Caribbean, ALONE, Maybe?

If, not a huge crate of pink bubbly - ALONE!!

She's not so grumpy at the moment and is scouring the job section in the papers???
We had said that we didnt want her looking for a job until she had started college, so, in her teenage brain, 3 days of college now means she can look for a job. She cant walk out of the house, but somehow thinks that she would be able to do a job. "Cloud cuckoo land" springs to mind!!

Anyway, hows the new job? Havent spoken for ages. Hope you are ok. Really good about DD doing so well.

Positive really feeling for you, it is so hard to see them suffer. Hope DD picks up quickly but it is going to be tricky not to fall into the "boom and bust" trap I think! I do think it's very important for them to have dreams and your DDs obviously involves having a job and just being normal. It is terribly difficult to let them make the mistakes themselves when their health is at risk and I don't have any answers just want you to know that I understand how tough it is.

My DD went to her first drama class today! First time she has done anything like that for more than 3 and a half years. I think she will quickly outgrow it, as she is older than everyone else but she finds meeting new people very difficult having been at home so long so it is a huge step. This afternoon she is tired but not ridiculously so.
Hope you're all having a good weekend.

Dear All, thank you for your welcome and words of wisdom last week, big help. My daughter has survived her first full week back at school despite EVERY morning having some kind of anxiety - or panic related fear, about getting on the bus, about the classroom, about eating in the dining room surrounded by people. She is very proud of doing a full week, but has been wiped out in the evening, not interested in 'homework' ( thankfully hasnt been much this week) and seems genuinely motivated by new subjects/teachers etc, so has had a very slobby day today and we have been cooking together etc to relax. This feels like such an achievement after the stop/start half term last year.( a bit like how you describe your boom and bust trap, positive?) SHe has been having a tonic ( Metatone and has some brilliant liquid iron supplement to have after period time.) Her eyes and skin look a bit more sparkly.... I feel really proud of her for persevering because I can feel how tense I get in the morning before she leaves to get the bus.. will she/won't she.... am treating myself to large glass of red to celebrate!!! Regards to all:o

Very down today - I would do anything to trade places with dd today. She was so worn out that she only lasted 10 mins at our family bbq before she had to go back to bed. She was always so sociable and family oerientated before - it cost her so much to have to give up and go in. When i went to check on her she was shivering again, she seems to feel the cold so badly, she didnt want to eat or anything so I gave her hot ribena and then had to go back. That makes me feel so torn - but I also feel like I'm neglecting the other two, and my dad and his fiancee and some friends were there too.

Sorry - whiny rant over. Hi to all - positive I hope your dd is feeling better after the weekend, will she be able to go back to college do you think?

I hope this week is better - dd seems to be getting worse by the day at the moment and despite seeing ped consult at the beginning of august none of the other specialists/therapists she said she would contact have got in touch yet - I'm very glad I've got you guys,

Hugs to all, Cuppy cake

Cuppycake so sorry to hear it's been such a tough day. That was us last summer. I have to say it's only been when we've fully committed to proper pacing that we have got anywhere, and unfortunately that does mean enormous restrictions on "normal" family life, and being fairly constantly torn between your ill child and your well children. How is your dd tonight? It sounds like she really needs to attempt very little at the moment - I hope that you can manage the next few days ok. Do you have much local support from friends or family? I know it's really hard. You are not whining - we all need somewhere to talk about the tough times too.
Positive how are you and how is your dd? I'm sorry last week was so tough.
We had a divided family day again today - I took dd1 and ds to church whilst dh stayed home with dd2, then dh went off to visit friends with dd1 and ds and I took over at home with dd2. Now I've just been out to take dd1 for a swim. At least on the weekends I get my turn to go out too. However, dd2 is still stable so all good. I have a little hope in my heart that maybe she'll be trying a bit of school after half term if we keep going in this way.
I wish all the dcs a good week.

Hi all, well at least she's managed to get to sleep tonight which is something - only problem is shes fallen asleep on the sofa and is snoring away beside me :D I can't lift her so she'll have to stay there. I'm not going to risk waking her after three nights of her still being awake past 2am.

all your messages are so helpful, Katch I can see how you manage your family so well between the two of you, my big problem at the moent in those terms is that dd wants so badly to not miss out and she pushes herself too hard. Because she is older (nearly 13) I do leave ehr for short periods - so I took my yuongest to church this morning and i will pop in to town to do the shopping etc without her - its just that i feel guilty leaving her, never mind that she probably wouldnt want to come anyway!

hugs to all cuppycake xx

A good nights sleep obviously paid off - she had enough energy to make cookies this afternoon although was feeling too poorly to come out to patchwork club - just the thought of being in thec ar makes her feel ill.

School nurse phoned and was really nice - she is going to chase up the CAHMs referral for me and talk to the OT about whether lucy needs any other support.

I'm feeling a bit brighter today - I've crossed off all the school possibilities i'd written on the calender - I felt like I was failing each time I missed one. I've decided neither of us need the pressure right now.

My spelling was terrible on the last post - pink fizzy cider makes me wibble! But did help me survive the BBQ!

hugs to all, Cuppycake xx

Really pleased that you are feeling more positive Cuppy and well done on crossing off the school things

DD phoned me from college today in tears to go and collect her .

I came home and spoke with consultant on the phone who has suggested a few things to discuss with the college, so phoned college and they seem really understanding. We have agreed a reduced timetable already and see how she goes.

I really thought we would get beyond the first week without all this.

Hope you are all having a better day than I am (DD3 is only one problem at the moment)

Had a big think, in context of we are now and stuff.
Here goes.

Three of us have dcs who have done LP and all are doing well. Dd was very tired this am but is fine - she is tired, rather than chronically fatigued - but then so am I!

She was pointing out to me that LP is a process that she still uses sometimes and is the thing that most helped her recover. Positive - she would be very happy to talk to your dd about what she did if that was any help at all. Will not be offended if you say no
Wondered what 21again - and Optimistic, if you are still out there - think. I know that boy who did LP with my dd is doing really well too.

Cuppy, forgot - how old is yr dd?
Guineapig - how have the last 2 days gone?
Katsh - you seem to be really organised and your dd has made so much progress from your early posts.It goes like that, doesn't it!
Choc - how is your dd? She has made great progress, hasn't she.
I want to know when I will EVER stop worrying, esp in the mornings when I stick my head in to dd's room - will she smile or be pale grey and puffy?
So far - usually smiling.

Hi guys popping into see how you are all getting on. Good things have happened for some - great exam results etc.

Sorry for some of you that things are moving a bit slower but you will all get there!

Positive I can't remember why but sure you have said about not doing LP. However your daughters situation is so similar to me. I was determined that everything was alright and started to do things but just could not do it. However the LP will really help her to get over this really difficult stage of wanting to do things then crashing and being unable to carry on. If she has any questions or concerns if I can help do ask.

I don't want to sound pushy or evangelical but just want all of those suffering in this awful way to feel better!

I am teaching at a sixth form and really hope you college can be accommodating for your daughter we do try at ours. Luckily we don't seem to have as many restrictions as secondary schools.

Cupycakequeen and quineapiglet hope things are going ok for you guys - nice to meet you!

Katsch really sounds like your little one is turning a corner - though must be very hard for you.

Dwardle I still wake up in the mornings with a smile - after being so poorly and just being able to get up on my own and enjoy a normal day without the fear of crashing is like Chistmas every day - so glad your DD is enjoying the same

Hi all, Positive so sorry your daughter had a bad time, strangely enough most of my friends have said that all their kids are tired or going down with things, maybe there is something autumnal around in the air that is maling everyone tired. Really hope she gets better quickly.

Dwardle My dd is 12. I haven't ruled out LP but I'm actually too broke at the moment to afford it - plus I'm not in a hurry for her to do anything. In the last two years we've suffered a major bereavement ( my mum), her dad and I separated in very trasumatic circumstances, we'ved moved house, she changed school and gone through puberty!! So I sort of feel maybe this is her body saying Stop! Enough! So if she needs to just eat and sleep and nothing else for a few months then I should respect that.

She got up for a while today - my brother came to visit and she sat up for a meal with us which was lovely. I've noticed as I've cut out all the stressy stuff the headaches have become much less frequent so although she is still exhausted and has muscle and joint pains she is finding it easier to bear.

Hi to everyone else, chat soon
love cuppyccake xxx

Chistmas is obviously a really splendid super type of Christmas!

I think there is a reason for the joint pains, Cuppy, but I cannot remember what Can anyone else? DD had a heat cushion that you warm in the microwave - a long fluffy thing - which she found incredibly helpful and comforting
I think you are absolutely right about yr dd cutting out all the stressy stuff - and am not sure if you can do LP with children as young as 12. I also think everyone is tired at the moment.
Hi Dinamum - thanks for your comments - I got what you meant about christmas! Yes, it is like that!

Dear all, it is lovely to be included in such a strong and supportive group - am intrigued to know what LP stands for, can someone explain it to me as it sounds like it might be worth bearing in mind. It is hard to read some of the posts as you realise how tough this process is for the children and parents alike, but it is reassuring that there is understanding out there! ( Hope that makes sense!). My daughter has now entered week 3 of year 10 - it is rather daunting looking at her timetable, and helpful reading comments about schools possibly reducing timetables if the need arises as I am concerned she has been overloaded.- it has turned cold and autumnal up here and I do think once the children are back at school all the lurgs and bugs start to surface so I am concerned about her being knocked back again by a 'germ' or 'bug' or such like - as you say, do we ever stop worrying?. Sadly we have had to reduce all 'extras' after school, band, Scouts, etc etc and am concerned that her life will be very monotonous with no extra fun. She went off today in a skirt and looked so dainty, but so very thin despite eating almost non stop. In bed by 8 as well. ( shes 14) I work in a school and usually find the second half of this term hard work with the cold and darkness, so it is not encouraging to look outside at the wind and rain already. Lots of treats needed I feel!
Regards to all XXX

Another messed up nights sleep. DD couldn't settle or get comfortable, she ended up moving from her bed to the sofa at about 2.30am where she did finally fall asleep. DD(7) then ended up in my bed at 5am with a sore throat.

Sometimes I'd like to just book myself into a hotel and sleep for 24 hours. I will have to try and catch up over the weekend when they go to their dads - as long as dd is up to it, she has started refusing to go, she knows now how much it takes it out of her.

Dwardle the heat pad does work sometimes - especially if the apin is in her neck or back. She also suffers from "twitchy" legs at night which is one of the things that stops her sleeping. Anyone else have experience of that?

Dinamum every day being christmas is definately something to look forward to :D I tell dd about all the success stories I find, I think it helps her to know that this is finite and there willl be an end to it eventually.

Positive How is your dd today?

Hope everyone has a good day, love cuppycake xx

Hi guineapiglet We cross posted! LP is lightening process, I cant explain it very well but there are other posts about it on here.

I decided that school isn't everyting and so if dd is well enough to go out she does the extras first and only then will she do school! I'd rather she have a little bit of fun in those times that she is able to do something. It was a hard decision to make but I think it is slowly paying off :D

Maybe the college could organise her time table so she doesnt start till 10 or 11? Take the pressure off a bit in the mornings, my dd is always better in the afternoons.

As a fellow newbie it is good to talk to you, I think you are where I was this time last year - it took so long to get a diagnosis and I could just see dd falling apart in front of me and felt helpless to stop it.

Take care, cuppycake xx

Morning -should be tidying up but wanted to psot quickly .
Positive I am so sorry that yesterday was hard for dd3 ( and for you). What's happened today ? Thinking of you.
Cuppycake - re sleep - my dd takes ( lots of ) melatonin, prescribed by the paediatrician. It is wonderful and gives her a much better nights sleep. Until she started it she was awake to midnight and then from about 2 or 3. This way she gets a pretty good night. Your GP may prescribe, but mine doesn't like to because of dd's age. It is really usual with CFS that sleep becomes a problem, and then it's a viscious circle.
Joint pain was a problem here too - we now see a great physio who as well as noticing that dd is very bendy, was able to explain that when muscles are fatigued ( due to CFS) it is much harder to hold joints etc in place and therefore everything is working very very hard. It was why as soon as dd went to bed she would have terrible pains and restless legs ( similar to what you call twitchy legs - she called it the stretchy feeling) . She is now working on very low level muscle strengthening exercises and we are much more aware of her posture and what positions she's in through the day and it has made a great difference. She also has supports in her shoes to help her feet and legs. Hope this helps.
Guineapiglet sounds like your dd is doing well to be managing school. It is hard to cut away all the fun from their lives. I have to say we are trying to build back the fun and then add school again. You sound like you are doing really well. I know what you mean about reading posts being hard. It's all a bit hard really isn't it?
DD is doing ok, but as always when we slightly increase her baseline activity ( which we did on MOnday) she is a bit more fatigued and grumpy. I think she gave her tutor a hard time this morning! I am looking forward to someone coming in for a couple of hours so that I can go and walk the dog in the sunshine .
Hope today is ok for everyone.

Hmmmm. consultant paed just phoned, she's ju8st had a call from dd's school nurse and is concerned at how much worse dd is since she last saw her in aug and wants me to take her in for an emergency appointment tomorrow.

I guess thats good isn't it? That its not just me thinking thinks and all headed downhill at the moment?

I've been researching melatonin and lightbox therapy so I hope it will be helpful to talk to a professional.

Bye for now, cuppycake

katsh - I hope you don't mind me interrupting, but when you say "dd is very bendy", is that the same as hypermobility?

yes - I think so

Oh yes - totally forgot about melatonin - very helpful, esp when psychologist told dd to up dose til it worked. she didn't need to but it gave her confidence.
Yes, Cuppy - get all the help you can.
Katsh - great description of joint pain
Positive - how are things?

Hi all, thanks for your messages again, will try and find information about LP if I can. Do hope the Paed appointment goes well for you today and you make some progress.

Not such a good morning here, I have been in floods of tears since daughter left for school. She had an awful day yesterday, mainly due to friends ignoring her as she had a dizzy spell and had to go out. Girls are so awful at times. This morning was such hard work to get her out, and I look back at my messages and see how positive I was two weeks ago. She was so energyless and exhausted looking today and she did not want me to contact the school about it all, but we discussed 'braving' up to her friends and being strong. Looking through the messages I can see that is what we all want for our children and I so desperately want her to be well. I have made an appointment at the docs for next week with a lady doctor she trusts and will take your advice and push for a referral as it seems so early on in the term to be facing this. Our other dilemma is that husband has just accepted a job 300 miles away and so we face a move - not sure whether to go now, or at end of GCSEs, I guess it all depends on how daughter is then.
Sorry to rant, am still crying, need strong coffee and then try and work out pathway through this for her. XXX Hope everyone's day goes well XXXX

Guineapiglet take time for you, it is hard trying to keep everything together. A potential move 300 miles away would be daunted without DDs health issues. It is so hard for her because she just wants to be the same as her friends but health wise, she is pushing herself to the limit and the danger is she will crash totally. I know how difficult it is as I've been there too, so much focus on exams and of course they should be able to do all these extra things as well and it is so unfair that they can't.
Positive how is DD? Hopefully the reduced timetable will help.
Cuppycake how did the appointment with the paediatrician go.
Melatonin is wonderful stuff imo, DD was prescribed it when she wasn't sleeping by the paediatrician, fairly near the beginning of her being ill. She is still on it, although the GP was a bit begrudging last time we got a prescription. Joint pains are very common with ME, DD suffers quite badly, haven't really found much to help, it seems to wax and wane.
DD is doing well, DH is taking her to see Avenue Q on Monday. It will mean taking the wheelchair and driving into London but at least she can go - she loves the theatre and she has been desperate to see Avenue Q before it closes.