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.......

[Chocaholic73]

Hello All. Glad everything seems to be going well for everyone and hopefully you're all enjoying the Easter break. Realise I suggested "introducing ourselves" and then scarpered without doing so!

So ....I live in Hertfordshire. DD1 (now 18) has had severe CFS/ME for 3 years. At worst she was virtually bedbound and needed help to get to the loo which was the worst point. At this stage we had a home assessment from Dr Crawley who put her on a very strict pacing regime, with a total of 4 hours "red" activity including watching TV and computer which was very tough when all she could do was lie there. Anyway, slowly things improved so she was able to move round the house fairly normally again but we were totally stuck on getting her out as that led to lots of peaks and troughs. Through the recommendation of a friend, we found the Perrin Technique which is basically a system of lymphatic drainage and, although it has cost a bomb, there is absolutely no doubt that it has made a vast difference. She is now able to go out for meals or short trips to the shops for example. In addition, to DD1, DD2 who is 13 keeps life interesting being a complex mix of ASD, Dyspraxia and a few other bits and pieces. She has been out of mainstream school since November and using an online school but it has increased the pressure on me no end and limited the opportunities I have to take DD1 out. Fortunately, she is starting a new mainstream school (with lots of support) after Easter. That's us I think!

[PositiveAttitude]

Hope all the quietness on here is due to everyone enjoying the holidays without hiccup!!

We certainly are. DD3 has been really good and has been dressed in clothes every day for 2 weeks, which is a first in 20 months! She is actually shopping with a friend today. I really didn't mind handing over a fair amount of money for her to have a good time! I think her plan is to make up for nearly 2 years of no shopping.

[katsh]

Positive - that's such good news. Must have made for a happy Easter. I hope that today was good following yesterdays shopping.
We are having a mixed time here. We went away to a christian event over Easter and dd2 took a big dip which was probably inevitable. 3 hrs in the car and away from her quiet places was too much for her. She's picked up since we've come home, but still not great. My dd1 with the nerve problem has been deteriorating but finally funding has been approved for her to be seen at a specialist clinic next week, so I'm hoping they may be able to halt her slide downwards. Ds has had a high fever this week, but it just makes him quiet and stationary , which is quite a change from his high energy loudness He is getting better today so the volume is returning ! Hope the rest of the holidays go well for you all.

[PositiveAttitude]

Hi Katsh - was it Spring Harvest you went to, Which one, which week? This year was he first time I have not organised a trip for the past 12 years. Hope you got a lot from it. I hope DD has recoverd now. Have you got the education sorted out now? I cant remember whether you were hving home tuition?

DDs paediatrician is stuck somewhere abroad. Really frustrating as I had been trying to contact her before she went away and now goodness only knows when she will be back to work.

DD doing fairly well, but still a very flimsy wellness. On the plus side she recovers quickly now.

Hope everyone is not stranded and not having to work double to cover colleagues that are!

[katsh]

hi positive - minehead week 1. It was a good time - thank goodness they televise the big top - I watched most from there while dd lay on the sofa or her bed. She's better than she was, but still a way off where she was pre-Easter. She's having home tutoring x 3 per week. Yesterday was the first after the holidays and it exhausted her, but today wasn't so bad. I'm sorry you can't catch your dr. How has your dd been in the past week?
Hope everyone else is ok.

[PositiveAttitude]

Katsh hey, my DD2 was Minehead week 1. She went with friends. My best friend went too, that week.

Sorry your DD is still down. Hold on in there. It does not last forever. Last year our DD had a huge jump upwards in a very short space of time and even though we still have a way to go, we are on the way up.

Breakfast calling.

[katsh]

Positive - if your dd still has programme planner from week 1 ( unlikely I'm sure) there's a photo of my family on contents page! Taken last year just before dd2 became ill, so a bit of a choked up moment when we saw it. Hope this week going ok for all.
I've decided to go back to much stricter pacing to see if that helps move things upwards for dd2. First I need a strong cup of tea and a shower and then I'll be able to face it .

[PositiveAttitude]

KAtsh I have just seen my friend who was there week 1, too and she is going to see if she has the planner for me to be nosey see! My friend was a little disappointed with SH this year. It was her first year without me, which she says made a difference and she felt it was just going over old ground. DId you get a lot out of it? My DD2 certainly had a great time, as always. I am slightly envious now that I ahve to wait another year. With one of my jobs I do organise a trip for 150 youth from here to go to Soul Survivor, but am now way too old to do the camping and I like my necessities luxuries, like bed, shower, cold water to drink, hot water to wash, proper food etc. The idea of joining them on that sends shivers up my spine, and certainly not the sort of shivers I should be getting!!

I know it is a total pain going back to the pacing, but it really does seem to work. It is frustratingly slow and troublesome, but keep your eyes on one step at a time and give it a good go. Is DD willing to get on board and do this, even if she doesn't really like the short-term plans? I think it must be very difficult if the sufferer is not positive and determined that she/he will put the effort into getting progress. I hope you have progress with it. The summer sun seems to really give my DD a boost last year. I am really hoping for the same this year. Hopefully it will do the same for your DD too.

Hows everyone else doing? to you all .

[katsh]

Positive - I did find it good. I suppose you listen to stuff from your particular circumstance and therefore as our current situation ( 2 kids with chronic illness) is new, things spoke to that in a new way. We found it logistically difficult with the dd's and ds, but plenty of food for thought.

DD2 is up for pacing, but in fact has spent all morning in bed - she said she just needed to be snuggly. So no real need to pace! just about to get her up to go collect dd1 from school.

Loving the sunshine

[dwardle]

Hi All
After a load of great weeks, dd has crashed - white face, sore throat etc! She has gone to bed about 3 hrs earlier than usual
She has been SOOO good recently.Has 3 exams between may & June. Must stay calm. She will recover. Think she may have overdone things recently.
Glad things are improving for you, Positive and hang on in there Katsh. How is the new school Choc?
OM & 21again - are you still there?

[optimisticmumma]

Still here Dwardle. Don't talk of crashing - remember your DD is just 'doing ill' today! So is mine for that matter - the start of the hayfever season in our case...If I say do you think you are 'doing ME' she says 'No just a day off like everyone else!'
Your DD will be fine for her exams and has probably been having a great time - school is tiring for everyone including healthy kids! It's the first week back remember.She will recover if not tomorrow then Monday...
My DD has 2 GCSEs this year too!

Katsch - you sound very positive so keep going!
Positive - so glad things are on the up!

Hi to 21again and Choc and others on the thread...

[dwardle]

Thank you OM - just what I needed to hear -She was doing ill but is now doing smiles and seems much perkier. Will remember this. Will also talk to dd about doing vs being.
Have you ever thought of being an LP trainer? You would be ace

[optimisticmumma]

Thanks Dwardle - I have but don't really think I would be good enough as I haven't experienced ME personally which I think you need to...however I am looking into doing some other sort of NLP training etc as I love all this stuff!
A useful rule of thumb for me is; Can my DD get up without having that fatigue? and the answer is always 'yes' so then I take no notice of the pale face, headache etc as she is allowed to be ill sometimes! FWIW I do think you are left which the residue of the illness for a good while - but that's only me talking. DD is preparing for her D of E practice expedition this weekend - I am so proud of her!!

[PositiveAttitude]

Sorry to hear that DD has had a dip, Dwardle. I blame it on the volcano ash, or something. Drastic dip here too. Dont really understand it, we normally dip at the end of term, pick up over the hols, then start again, but this time all the wrong way round. Oh well, hopefully a good weekend and start again next week. Glad your DD is smiling this evening though.

OM - Your comment about "Can my DD get up without having that fatigue? and the answer is always 'yes' ...." What if the answer is NO? DD is still fatigued on waking? What does that mean?

Hope everyone has a lovely weekend in the sunshine.

[optimisticmumma]

PA - it means she still has ME imo. As Dwardle's DD has done LP she is free of ME therefore if she is ill she is ill it doesn't mean ME. If she was ill for say a few days and was always waking fatigued and this didn't improve then she would still be 'doing ME'. I was trying to say to Dwardle not to panic and that talk of 'crashing' is back to ME speak!! I don't think I'm explaining this very well - had a glass of the old vino already!!

[katsh]

You guys have really got me wondering about LP for my dd but I do struggle to understand how it differs from "positive thinking". I so wish I could sit down in a room with all of you and have a massive CFS Q & A session .
DD had bad night - vomiting and distressed. Seems to be that when she has a very bad few days her ability to tolerate food decreases and she has a vomiting episode. She is so tiny that she can't really do with missing a few days food. When I read your LP stuff I wonder if that would help her, but I can't really see how.

It's my wonderful DH's birthday today, so as we have 2 out of 3 sick tonight we are in watching DVD's of classic 70's series from his childhood!

Have a good weekend all.

[optimisticmumma]

Katsh - It is different to positive thinking as it is all about accessing different neural pathways. Why don't you ring your local practitioner and talk to them about it? A chat over the phone won't hurt. Your DD may be too young although I know ours uses puppets etc with the young ones.
It's a bit like explaining your Christian beliefs to someone else who can't see how it can be true!!?! May be it's worth suspending disbelief and giving it a try if you can....

Have a lovely weekend and I hope that your DC improve soon. You really have had it hard but your DH sounds lovely so stay strong won't you?

[optimisticmumma]

BTW Katsh we could sit down in a room and talk it's been done before! Remember our meet-up PA and Dwardle? . I would be happy to chat to you in RL...

[dwardle]

And me! I can get to London very easilyOur meetup was wonderful. I could even bring dd - who oddly never seems to turn down a day in London!

Yes - totally agree with OM as usual. ME does leave a residue.dd and I have been wondering whether to ask her practitioner for a meet-up to reinforce her skills. I think what took me to LP was a feeling of what have we got to lose (apart from the money of course), given that it works for others and has medical recognition (GOSH, Dr Crawley, that conference last summer mentioned it) and that CBT is an acknowledged way of treating ME and this is not unrelated, and that Neuro-ling programming is also effective. So - we tried it and I am SO glad we did. You could certainly have a conversation with someone to see if your dd is old enough, Katsh.

[dinamum]

Katsch LP is nothing to do with positive thinking at all.

Ok bear with me dodgy description of LP coming up here!

If you see something that you are frightened off - you react in a certain way eg if I see a snake my stomach churns, I take short breaths and feel like running away. I know that it is often a foolish and unnecessaryly response but my body physical behaves like that. If I think positively ie that the snake will not hurt me, the snake is nice etc I will still react physically in the same way.

So in ME your body reacts in a certain way and you have to retrain your brain to make your body physically react in a different way. (Still with me!)

So by using the LP technique it changes the brains response to a given situation and hence stops the symptons.

The more you do the LP the more your brains reaction becomes automatic to the new behaviour.

This is why if you think it will not work it won't because you are only allowing part of your brain to do the LP and that will not be sufficient to change the brains reaction.

Personally I think kids will be great at LP, they will not need to understand the theory (it is only us questionning adults who want to know how it works)but to just do the LP I bet kids are better than adults.

If this is a bit waffly it may help if you get insomnia later

[optimisticmumma]

Hear, hear , Dinamum - thanks for putting into words what I was trying to say....I agree that kids are so much more open and able to access LP...

[dwardle]

Brilliant explanation, Dinamum

[PositiveAttitude]

Thank you Dinamum. I will try and get DH and DD3 to read that......

[katsh]

Thank you all - I've been doing masses of thinking about it all over the weekend. I've contacted 2 practitioners in my area and will talk to them - although neither have ever worked with someone as young as dd. It has made me look at her "symptoms" and OM's comment " Can she get up without fatigue" - at the moment for dd the answer is yes. So i'm looking closely at what it is during her day that brings her down. I realise that it is often her looking unwell that causes me to curtail activity etc ( as at her age I am, and have to be in total control of the pacing for her). Today we had a conversation where she told me that often experiencing a low level of symptoms causes her to worry about having more and then she feels very tired and then the symptoms progress. I can see from what I've read that LP could help that. I am going to talk to her play therapist and see if the CAMHS team might be able to help her a bit with that.
Anyway - thanks for all your input as ever.
Have a good week everyone.

[dwardle]

Am thrilled - dd's LP practitioner has agreed to a follow up visit and dd has agreed to go!
What a brilliant series of posts for provoking thought and reflection. Thank you everyone - hope it has helped you as much as it has helped me.