Sunday, April 10, 2005

Reprimands and confusion

One of the lasses from the 'support' group asked for a list of my symptoms and more information on the energy for life program.
I supplied this - basically just cut 'n' pasted from the info I have on here (see, a blog is a good thing) She and others soon responded - I don't think my previous email regarding positive thinking went down too well with people (though in retrospect, what did I expect? No one likes to be told they're being miserable - especially if they have good reason to be!)

Anyhow, this was my response from the lass posing the question:
Well, I'm in two minds over the programme, in theory it sounds like a good idea but the 9am starts and 3 solid hours of sessions shouts to me that they have little understanding about ME. I also find it worrying that they are debating the pros and cons of pacing, if the main charities are saying this is the best road for us to go down I'm more inclined to listen them.

I'm very happy that you feel the program is helping but I do find it sad that you feel we are dismissive of therapies that are on offer if they don't fit in with our 'ideas' about ME.

IF anybody has come over as dismissive its probably because we've heard it all before, if these therapies are the magic cure surely we would all be better?? You have every right to be optimistic as you've only just become ill, you haven't been on the treadmill of various doctors for years with them telling you its all in your mind etc - speaking figuratively here as I've not really had that experience!

As you have been diagnosed quickly you have every chance of returning to full health and you haven't been exposed to negative attitudes so are more likely to feel positive about this programme but you need to understand the other people on your course who have been ill for a long time may not.
If they didn't get a diagnosis and they tried to carry on as normal it may be difficult to improve to such an extent as you. Plus they've probably heard it all before

I have been ill for over 10 years - with better and worse times - I managed to get myself back to education and carried on with my life for 5 years before I became worse again. I have never dismissed any treatment that has been offered, in fact I think I've tried most :-) but none have worked, including graded exercise. All they are offering you is GE which has been proven to not help people with ME, as far as I'm aware it can help people with CFS.
With regards to CBT I agree that some people can benefit from talking to someone to help them gain a more positive outlook and help them focus on improving, as its very easy to become downhearted but it shouldn't be seen as a cure.
Also only as long as its done by someone who understands about ME and who doesn't believe its a psychological illness.
This has confused me - all the reading I have done and the information I have from my own Dr state that CFS and M.E are one and the same thing. Yet she talks about them as 2 seperate illnesses.
How can they both be exactly the same and yet different? Where is the divider? They both have the same symptoms, the same type of diagnosis and both get treated together.
It makes no sense to me.
And I have no clue what CBT is.
This whole thing just made me feel like I really don't want to talk to anyone on the board again.

Everyone with this 'curse' is different, the symptoms vary wildly from person to person and the help they recieve is just as chaotic - yet the emotional reactions all seem to be the same.

I dunno, I just feel like everyone on there is just looking for a way to shout:

"Hey, look! I'm ill forever - and I'm worse than YOU! But you're going to end up like me in the end anyway, probably - good luck staying optimistic, I was once, didn't help ME either though..."
It's hard to stay truly positive in the face of all that "Nothing works for me - but it might for you..." Bullshit - that's just basically sounds like another way of saying "well, I've obviously got this worse than you have so it's ok for me to give up but you can afford to be positive about it"

So under the guise of being strong and optimistic, any positive thing just feels like something added just to soften the blow.
I know that's a really shit thing to say, I've never met any of these people and I don't know what they have to deal with day in and day out. But seriously, to me almost every post just reeks of hopelessness disguised as some form of positive affirmation that things are looking up! Who are you trying to convince here people? Me or you?!

This one was a slightly more positive reply from my point of view - but again, as you can see from the parts I've put in bold on both emails - overall the response was not quite as encouraging as I might hope from people in a 'support' group:
Hi Vics

I've had ME for 8 years now. I was diagnosed by my GP after just 2 months. Both he and my specialist Dr Pattrick believd I had a physical illness with a biological cause. I have not had a bad deal from the medical profession.

I personally requested that I try graded exercise which I did on a one to one basis with a physio and the sessions lasted half an hour.
The physio asctually stated that I had one of most postive attitudes he had come across. I really believed it was going to work but after the course I just went more and more down hill.

I think the reason the people on the courses who have been ill for 8 or ten years are sceptical is probably because increasing their activity levels and exercising more is something that they have tried over and over again in the past with a positive attitude and it has just resulted in them relapsing.

I personally think that a positive attitude helps but whether you make a good recovery from ME is mainly down to luck.
A school friend of mine became ill with ME around the same time as me I remember her saying to me "I've told myself I'm going to be ill for 10 years and any less is a bonus".
She had a negative attitude I was always commended for having a positive attitude. She recovered and I didn't.

Graded exercise does work for some people. I know 2 people who swear by it. However, even the medical advisor of the ME Association has stated how it harms more people than any other therapy.

I also know of many pepole who have made good recoveries from ME and they mainly do so within the first 5 years of the illness so as you have only had it for 6 months and you are able to attend these courses you obviously have a fair chance so I wish you the best of luck.
That last paragraph is by far the most encouraging thing I've heard - It's just a shame that the balance of both and other responses is weighted so far to the contrary...
Ah well, I've decided to stay away from any outside influences, take my concerns in to the guys on Tuesday and just try to keep to this course until my 6 weeks are up.
Fingers crossed I'm one of the lucky few it helps eh?!

Sadly, with all the family stress I've had since Thursday I haven't kept to the exercises this week - but I intend to give 'em a try again from tomorrow and I'll make my apologies on Tuesday... At least I can make it in - Sean has loaned me £200 to keep me going until I get some response from the benefits people. Lets hope it's soon - I can't keep borrowing off people like this just to get by!

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