Friday, 25 February 2011

Rock, Paper, Scissors ---- or, three more things that are useless to me.

I've been trying to think about what to blog lately, after the epiphany (heh) of late that this thing needs to take a different direction. It should have been obvious really, as almost two years have passed since my failed matching visit with Quasia from guide dogs. Looking at the past posts, there have been more about accessible tech than there have been about guide dog stuff. Well, the best laid plans of mice and men, so the saying goes.
So, broadly speaking, what's it all about (Alfie) ? Well, since September of 2010, the fibromyalgia has really turned up the heat for me. It is well known that those of us with chronic pain conditions suffer badly through the colder months. To add to that, I took it upon myself to go on a diet and lose weight in December 2009. I lost three and a half stone all told, over just under twelve months. According to my gp (and from my own online research), estrogen is stored in fat, and when one loses fat cells, estrogen is dumped into your blood stream. This happy little hormone is well known for increasing sensitivity to pain. Apparently my gp thinks this is why I have been having the winter from hell fibro-wise. However, I stopped losing weight and thus fat last October, so if the estrogen is still flying around my system by now it must be strong stuff. When I embarked on my diet, I was comforted by the conventional wisdom that told me losing weight would put less strain on my joints and muscles and would make me less prone to pain overall. What a crock of shit that turned out to be.
I recently insisted my gp refer me to the rheumatology department at my local hospital, who tested me for thyroid problems (I have anti thyroid hormone levels that are way outside the norm, but apparently I do not have an over or under active thyroid), lupus (which I do not have), and vitamin d deficiency, which I do have. I also have Raynaud's. I have yet to get to the doctor to get the script for the vitamin d. Blame the agoraphobia. Last time I saw my gp she took me off my high blood pressure which I had been on for three years. It seems my weight loss took my bp right down and so I came off the meds. However the last few times the hospital have taken it and I have taken it here at home, it's been up in the stratosphere again. I fear a script for vitamin d isn't the only thing I'll be leaving the doctors with after the next visit.
The rheumi bods gave me gabapentin, which is about a useful as a chocolate teapot pain wise, but if I take 300mg of it before bed, it helps me sleep. I am supposed to take 100mg three times a day, which just makes my throat sore and dry (one of the side effects I painstakingly explained to the rheumi doc that I did not want to risk, being a singer) and makes me slightly dozy. I am fairly dozy anyway these days however, but it doesn't help the pain at all.

Visiting doctors and consultants seems to be a game of rock, paper, scissors - we meet, we both throw out our ideas as to what's wrong with me and see if they match, or if one of us can get one up on the other. So far, in the last four years, the rock, paper, scissors game has thrown up constant corneal erosion syndrome to explain my constant dry and painful eye (that was from "their" side), thyroid eye disease (ditto), blepharitis (ditto), Sjogren's (ditto) and now we're finally back to it begin down to the fibro after all, which is what I suggested in the first place. My pain and fatigue issues have been suggested to be thyroid disease, lupus, rheumatoid arthritis, and that old favourite, depression. I don't doubt I am depressed. Most people who are in constant pain are depressed, oddly enough ! However, fibromyalgia is a diagnoses of exclusion, and maybe finally everything else has been excluded and I now have a definite, for sure, yes-this-is-your-problem diagnoses. It only took eight years.

So here I am, looking at March looming large upon us and hoping desperately that the warmer weather will alleviate the Raynauds, the fibro pain and the muscle weakness. I fear if the effects carry on at this level I wouldn't be able to handle a guide dog when the time finally came for me to have one. I can barely hold a knife and fork to eat some days, let alone a harness. Which would be pretty ironic ! And not to mention pretty shit.

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