Hi everyone,
this is my first post/reply to thread. Sorry that my first post will consist mainly of venting, ranting and raving but I have been a seething mess for years ... I know it doesn't help but from what I see here I'm apparently not the only one. I live in the Bristol area and the only "treatment" I've been given since I was diagnosed in 2004 is the CBT programme through Frenchay hospital. Since then I been neglected and just left to rot. Ok so the CBT was done by a ME/CFS "specialist" team and I did find the advice on pacing extremely valuable in helping me manage. However I attended group meetings (exhausting) and we were told that if we were disciplined enough and followed all the advice received during the 12 week programme we could in time recover. I had high hopes at the beginning and naively believed them ... perhaps I desperately wanted to believe them ... but it didn't take me long to realize that despite all my discipline it was still the things I could not control (virus, infections, bereavement, unforseen surgery etc) that would put me into a relapse pronto. When I'd phone the team at the clinic I was furious at their suggestion that it must somehow be my own fault if I'd relapsed as I must not have been following their advice and there wasn't anything further they could help me with despite at the beginning being told that they were available for ongoing long term support. I feel I/we were lied to ... and as a result am now totally PISSED OFF.
Sorry for the shouting and swearing - it was for the so called "professionals" not fellow cfs sufferers. Anyway - this business about the blood banks just has me fuming ... I feel someone's not being honest with us. Yeah I feel pretty much like a raving lunatic at the moment but sadly and ironically that's what the system has reduced me to (as opposed to mental illness being the cause of CFS) btw I was actually told by a very arrogant medic that CFS is not an illness but a syndrome - (the implication being that it's ... ? Can anyone help me with that one?) and tends to affect those with underlying personality disorder/issues. Anyhow I promptly pointed out that AIDS is also a "syndrome"
Oops am I a little cranky? Well excuuuuuse me. (one of my favourite American sayings).
Sorry for venting everyone.
Peace to all.
Hi misscrankypants...
A big welcome to the forum...
I totally understand your need to vent your frustrations, and to have a grumble...
Believe me, I've done more grumbling, venting and even crying since I've had this illness than I'd ever done in my life before... I think severe 'frustration' is the word I'd use...
I totally identify with your situation, and have had almost identical experiences as you with the neglect of the UK health services...
The only differences are that I never got any treatment, medical input or referal for the first five years, and was referred to a CBT course only after I'd been ill for 5 years. Luckily, by this time, I knew all about my illness and so I knew they were talking rubbish straight away, and so I only went to 2 sessions.
Also, my doctor never said anything negative about my ME because he just never said anything. Period. He just used to look at his computer and write stuff while I spoke. Goodness knows what my records say! But at least he accepted my self-diagnosis of ME without a negative vocal response anyway... I think he may have blinked once or twice while I was talking to him.
Best wishes to you misscrankypants... hope you enjoy the forum...
Feel free to send me a private message if you'd like to chat further.
Bob