Wednesday, April 06, 2005

Rants and state of mind

I've just recieved the following email from someone via the support group:
Glad to hear your doing well on the Energy for Life programme.
I've heard other people saying it wasn't very useful I met someone a few weeks ago who had been on the Energy Back to Life programme. She said the sessions were 3 hours long and started at 9am.
She felt it was like a form of bulllying and said the patients all met up in the car park afterwards to say how awful it was.
She just went along with things and said she was OK so they would leave her alone. They write things on the blackboard about self-esteem and motivation. She said she was virtually bed bound for the rest of the week and loads of people dropped out of the course.
I did once speak to someone who said they found the course helpful but she was already 80% recovered before she went on the course and admitted it did not lead to any improvement in her symptoms.
It kinda made me go off on one *blush* thought I'd share my response to the group in it's entirety, reading back - possibly I was a little harsh - I know some people are unable to function at all because of this, but to not even try something else?
I was a bit gobsmacked and... well... livid I guess...

With regards to the 'Energy for life' program,
Yes the sessions do start at 9 and I'll be the first to admit that it's a long 3 hours.

But I can also say that I've only really had CFS 'properly' for 6 months, I'm not yet at the stage of going once to something and sceptically listening whilst saying quietly to myself "that's no good, it won't help ME" and if I do catch myself doing it I hope I give myself an internal slap and open my mind to the possibility that it
might!

It was interesting for me because this was the first time I had encountered other sufferers face to face. I found that while all the other people there were friendly and intelligent, many of them have had this for at least 8-10 years - some longer.
On the whole, they also have not been as lucky as I have with my Dr.
I just felt that these ladies had been disappointed so often that they had resigned themselves to being sick and thats it, nothing anyone could do about it - That this was possibly just another thing sent to 'prove' they're not really sick - that it's all in the mind.

My dad and my boyfriend have been throwing the 'positive mental attitude' phrase at me till I'm ready to scream. But after sitting in that room for those 3 hours I'm beginning to think they may have a point.

Most of the people in there were just plainly disgusted at the idea of graded exercise (I'll admit I'm a little trepeditious having had more than a couple of adverse reactions to pushing myself physically - just as I guess you all have) the unspoken consensus seemed to be that "I'll do it because I have to, but it'll just make me worse - you'll
see".
I came home feeling a little sorry for the 2 physiotherapists, I think they're going to be pushing uphill with this - if the lasses don't just drop out completely.

Yes, I appear to be in a 'better' physical state than most of them - but I was VERY active before this kicked in, I've not allowed this to stop me doing a little bit when I have a good day even if it knocks me flat for the next week (ok, so after the session I now know thats the wrong way to go about it, but it has meant that when I have a good day, my body still does what I want it to do, mainly)
The only person not giving off "yeah, whatever" vibes was a lass who seems to have suffered with this forever.
She was in a wheelchair and could walk a few yards with help or a stick, she's been having physio for weeks to enable her to do this program.

To my mind - if physiotherapy can help her get out of bed, into a wheelchair and able to do at least 6 minutes of physical exersize a day after doing NOTHING for the last 6 years - well I'm all for giving it a PROPER try - mentally AND physically!

Saying you're "ok" and 'just going along with things so they leave you alone' totally defeats the purpose of it - everyone has different limits!
They need to know yours otherwise it will set you back because they'll have you doing too much while they attempt to gauge them!
You already know that if you do too much then it will seem like torture and you will feel crap afterwards - that's what they're trying to STOP!
(sorry, getting worked *breathe*)

My question is:
Why did they all meet up in the carpark afterwards to whinge? why did they not instead give some constructive feedback to the people running the program?

How are we supposed to get decent medical care if we act in this way - these people are not gods and we can all agree the medical profession do not really understand this, unless we HELP them understand it - how can we expect them to help us?

Um... sorry about the rant, but the level of hopelessness about it I seem to encounter everywhere really bugs me.
I KNOW it's hard - I have it too, that's why I joined this group - for a little moral support and the hope of some information. I wasn't expecting to feel as if there was no hope and that everything will be made harder for me through the disbelief of others.

Yes, the incapacity benefit and DLA will be a problem - I've heard nothing I didn't expect regards that - the government are quick to take money from us but a little less eager to provide it. Again - that's common knowledge.
What I wasn't expecting was the outright cynicism eveyone seems to hold with regards the medical profession. I understand that 10+ years ago it wasn't even a theory let alone a recognised illness and that many of you have battled problems I cannot probably begin to imagine - but these days they ARE trying.

I seriously think If people could just get over the 'but YOU don't really get it' stage, stop dwelling on the symptoms themselves (I know THAT is easier said than done) and actually have a little optimism... I dunno - maybe we could finally start getting somewhere...

Please don't anyone take this as a personal dig, it's the general attitude I'm striking out at, not individual people, but take a look at just the last 6 months, have your thoughts and attitudes changed?
If so - for the better or worse? If not...
Why not?

Just something to think about...
*end rant*

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