Chaos to Cosmos
The path from chaos to cosmos was discovered by telling one's life story

Thursday, 28 August 2008

Finally a medical diagnosis

Finally, yesterday, after around 11 years of having no access to medical care and at least 35 years of worsening symptoms that have been ignored or brushed aside, I saw a doctor and to my utter surprise and enormous relief, he was perfectly happy to accept that the increased symptoms I've been experiencing for the last 13+ years are those of fibromyalgia ... and asked if I minded if he put that on my notes.

Frankly, I don't mind what he puts (well, I do, I'd rather it correctly say Myalgic encephalomyelitis (ME), but since the NHS no longer use that and uses Chronic Fatigue Syndrome (CFS) instead - impossible for me to have as I'd been ill for a decade and a half before that awful crap misnomer was invented - I therefore prefer Fibromyalgia be used as it sounds more like a 'real' illness), as long as he accepts that there's something to investigate, because, in the exceedingly long story that ensued during all this time, as I explained to him, the worst part (above the considerable physical pain I've endured) is having been doubted and treated as a liar by my own family. Better yet is that he gave me a medical certificate with the word fibromyalgia printed on it that I was able to wave under my mother's nose. She sniffed at the paper with an air of suspicion then denied ever doubting me - like once before, when she said, "Oh I believe you, but I want backup."

I'm sure you get the irony / contradiction. She still doesn't, but lets see if that's enough to satisfy her and if she's capable of treating me any better now.

[No, of course, it wasn't. She later declared that "it's only on paper" and she won't believe it until the doctor tells her himself. This would be funny if it wasn't true. I'm 51. He won't discuss my health with her. Obviously? No again. She refused, utterly, to believe that the concept of patient confidentiality exists. When I assured her, once again, that it does, she declared it was "wrong". The diagnoses of both Fibromyalgia and Chronic Fatigue Syndrome were later confirmed to me - in writing - by my Rheumatologist. This letter has since been accepted as evidence by various bodies. Of course, this was still not good enough for my mother.]

Anyway, the doctor wanted to get some basic information about me on that first visit yesterday - none of my notes have materialized yet (if they ever do) - and he's sending me for some blood tests; cholesterol, sugar, etc., but his intention is that we take a holistic approach (how I LOVE to hear that word from a mainstream medic), work out a management strategy between us and then tick off the issues one by one, as I'd made it clear that I have a list. (The positivity was pretty short-lived as not much has been resolved and nothing successfully treated since.)

Nothing is simple, of course, because I have to go to hospital for the tests (on Monday), on an empty stomach. It will take two buses and a taxi, cost around £20.00 return (for the approx. 5 mile journey) yet, because of the bus times, the earliest I can be there is 11.30 in the morning. A bit late to be still starving as the nice lady at the hospital, who made the appointment, kindly pointed out!

The way she asked "Fasting or non-fasting?" sounded funny too, like "smoking or non-smoking" used to sound, when you had a choice on flights! :)

Still, it should represent a step forward, provided I don't faint on the way.

But getting any diagnosis after this long is a bloody miracle!

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