Tuesday, April 17, 2007

NHS blog doctor got me thinking

I was on the comment trail and stumbled across a 'the NHS blog Doctor' after reading a few of the posts on my landing page I decided (out of curiosity) to do a search on cfs articles within the blog itself

I've been reading and reading and finally started to comment only to realise my comment was becoming a full blown post in its own right, rather than erase everything I decided to copy and paste it in here because this is MY place for MY thoughts on CFS and if I'm going to take up a lot of space, it's far more polite to do it here instead of eating up someone else's webspace..
Anyhow, a few of the comments to his articles were involved with classifications/ names and the like to them I write:

I had an initial diagnosis of PVFS about 3-4 years ago,

Now I'm classed as either CFS or ME depending on which medical person you're talking to, I've no idea when the diagnosis changed but when talking to someone I tend to use CFS as you can at least tell people what the acronym stands for - M.E. has 2 different names according to my research for the site I built about the subject (which needs updating desperately) both of which seem unpronouncable at the best of times - never mind when you're having trouble verbalising a sentance.

The things is, I really don't care what it's called but I need a name to write on the 1001 forms you're forced to fill out to keep a roof over your head when you can't work a steady job. Every time I go to see my doctor I'm praying he says "ahh.. Miss Stringer, sorry about the last few years, you were misdiagnosed, here - take these shots/ pills and you'll be fine"

I'd be too happy about being able to go back to work and being able to look at the prospect of having children without the worries of a relapse to care about a little thing like misdiagnosis.

On the aforementioned blog there is a lot of talk about Lyme disease but from just reading that wikipedia link it seems impossible to differentiate between it and CFS is it that you can test for Lyme but not CFS, or is there still no way of telling apart from a rash?
To be honest I'm almost afraid to look into it because I hate feeling like a hypochindriac, I especially hate it when my boyfriend - the person who has been the most supportive person imaginable throughout this whole thing, laughs at me and says I'm reading into things and then convincing myself I could have it - I don't, at least I tell myself I don't do that.
But do I?
If I'm completely honest with myself, I do - a little.
For example - my elbows, the pins and needles in my hands, the pain that travels up my arms into my shoulders and neck that cause the headaches.. I thought I'd found a cause for them but when I mentioned it to him, he laughed - so I didn't go to my doctor.. I should, but I don't want to have the hypochondriac label even more firmly attatched to me than it already is over the CFS one.
Is it because I'm so desperate to not have CFS/ME that I'll look at things which are treatable and mentally slot my symptoms into that shell instead of the CFS one? Or is it the more reasonable desire to know WHATS WRONG? To want to find a root cause for the problems before me so that I can understand them and find a solution.

I've been alternately researching symptoms and burying my head in the sand for so long that I no longer know just what drives me to care anymore.

(Now this is the point where every other sufferer I know will probably clamour to have me burnt at the stake..)

I do believe there is a psychological aspect to this illness and that is why CBT does help some patients and not others.
Some patients have had this for decades and have received little to no help from a recognised medical professional, they have been ridiculed by friends and family and termed a hypochondriac by one and all - these people are so depressed by the effects of the illness that it has come to define them, they respond to almost anything put forward in a kneejerk defensive manner - the 'ill try it but it wont help' attitude because they have tried practically everything available already.
CBT will only help someone who is truly open to accepting the illness and finding ways of managing to live around it - that would be the people 'new' to the illness, those still unsure just what it is they have and what the hell does it all mean. The people I mentioned before have had the illness for so long that they're stuck in the 'fighting it' stage, they will never truly accept it because how can you accept something about yourself that nobody else will?

I'm not sure if that made any sense, I guess what I'm trying to say is that CBT is a way for patients to define just what cfs means to them and then in turn helping that patient come to terms with all that definition means, people who have suffered with it for a long time already know what it means to them and therefore feel they are being patronised to and cannot take on the second part of the therapy - the part where they can come to terms with it, they already feel that they have - In other words CBT is a waste of time and resources for these people - all they really want is for people to take them seriously, becoming well is now a secondary wish because it seems a futile one.

Until there's a cure there's no point doing more than learning to manage it, in my opinion to do otherwise just stresses you out which in turn exacerbates all of your symptoms and so on and so forth the vicious circle runs ever on - the problem is, how best to manage it?

Which is why I worry about hypochondria and still occasionally look for alternative explanations for my condition on the sly.

Now I'm off to read Marys blog because from her comments over at NHS Doc she seems to be right on my wavelength..


S@RZI said...

Hi there, rosevive! I clicked the site you created for cfs out of curiousity (I wanted to know what cfs was, hehe) and I'm sorry to learn about your problem. So I thought I'd drop a line here to let you know that somebody over here in this part of Asia wanted to cheer you up...

Vics said...

That's actually very sweet! Thankyou for the thought sarzi!

Mary said...

"I really don't care what it's called but I need a name to write on the 1001 forms you're forced to fill out to keep a roof over your head when you can't work a steady job."

I wish I could've put it so succinctly.

Sylvia said...

Hi! I got hear via "Living with CFS."

You said:

"The people I mentioned before have had the illness for so long that they're stuck in the 'fighting it' stage, they will never truly accept it because how can you accept something about yourself that nobody else will?"

Ouch. From the beginning (6 years ago) I vowed not to live in limbo, but the fact is I keep thinking of things I would like to do after my miraculous recovery (of which there is not the least sign). Of course the problem with accepting ME/CFS as a permanent condition is that there is always the possibility of a medical miracle that will put us all back on our feet again. And it also behooves sick people to be at the same time heroic and miserable; if we're happy and content as we are then we're definitely malingering! I think the social aspects of this illness are at least as complicated as the physical aspects!

wendy said...

I too think that some of us DEVELOP psychological problems after suffering the physical stuff and not really knowing what the hell is going on. I now have severe social anxiety (phobia) because I tried so hard to be my old self when seeing friends and the "you look so good" comments by well meaning folk made me feel even worse! I started to become anxious about visits firstly because I feel so crap (would anyone with the flu want to socialise? ..probably not) and secondly because I try so hard and it is so exhausting. I want to try EFT with Jackie but haven't plucked up the courage to phone her. I KNOW FOR SURE that the psychological stuff would go away if the physical illness buggared off ( I too am waiting for the miracle cure and feel that life is on hold) But is it possible to deal with the psych stuff while still suffering from the ghastly symptoms of CFS ? Also wanted to comment on the Lymes disease..hypochondria thing. It is only natural I think to look for answers. Itested positive for borrelia with a private doc and negative for lymes with NHS. Lots of stress and anxiety re treatment. I decided not to take the long term antibiotics as I read that they often don't help. And I am slowly getting a bit better anyway...VegEPA are definitely helping. I am now trying not to trawl the internet for other illnesses I might have. I also stopped watching DVDs of Dr House when I wondered, because I worked in Asia before getting ill (only for a moment honest!!) if I had leprosy. I ask you. ...Engines failing captain I canny hold on Better health to all Wendy x

Vics said...


You're spot on, the social aspects of this illness are incredibly complicated - and those complications have a pretty negative effect on the mental aspects, Mainly for the reasons Wendy states

It IS hard to have to always justify to people why you don't work/ go out etc etc and it hurts when people accuse you of malingering because they can't possibly understand what this illness is like.