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.

- Posted using BlogPress from my iPad

Monday, 21 February 2011

Been a long time...

... not since I rock 'n' rolled. But since I posted.

I originally started this blog when I went on the list for a guide dog. That whole adventure is documented in past entries, and because of how that turned out, the focus of anything for me isn't going to be waiting for a guide dog for a long time now. So I got to thinking today about what my life really was all about right now - and basically, it's all about two things.
One - the band I am in - or, the band "proper" as I have to call us. As I'm in a few, talking about them to people calls for a way to differentiate between them. My main focus musically is the rock / blues band I am the lead singer of, The Secondhand Band. We have our first full gig at the Brickmaker's in Norwich a week tomorrow (1.03.11)
Two - coping with the increasing effects of my fibromyalgia and associated conditions.
A close runner up third thing would be how my visual impairment interacts with the above, but it interacts with everything, so there's no point in giving it a separate focus. To be honest, the fibro is becoming like that too. It's like swimming in glue. I've been in a flare since September last year. Sometimes the pain has felt like it is going to drive me genuinely insane. I now know exactly what people mean when they describe pain as a living thing, eating you from the inside out.

Those two things in my life are constantly at odds with each other. Along with fibro (for me) comes chronic agoraphobia, panic attacks, and social phobia. Trying to explain that someone who is the lead singer of a band suffers from those things is like trying to nail jelly to a wall. Nobody understands it - they see me, singing, fronting the band, and they just assume I am either exaggerating the agoraphobia or just plain making it up. So far we have only gigged in one pub, and so far, only half an hour slots. I coped with those - although I have to admit i was so nervous and scared that I actually remember nothing about either occasion at all. Not one thing.

The fact of the matter is, I have a hundred and ten foot garden which I hardly can bring myself to go into. I can't empty the bin, because it involves going into the garden further from the house than I can manage, unless Darryl is with me. In the summer, I sit as close to the back door as I can manage. I moved my veggie patch down as near to the house as I can get it when really it should take advantage of the space further away from the house. I would rather put recycling in bags outside the back door than go into the front garden, walk ten feet from the front door and put them in the recycling bin. Then when the collection is due I have to muster up the courage to collect the bags and bring them through the house and take them to the bin at the front. Or keep the bins round the back and drag them through the passage before collection day- painful and means more going outside.
My fiance lives five hundred yards away and has done for over three years. Yet I can count the times I've been to his house on the fingers of my hands.
I cancel doctors and hospital appointments for very important things if I can't get transport to the surgery, and sometimes, if I can't face it, even if I can get transport. I can no longer travel on the bus. This has been a recent development, I used to be okay if I was with Darryl, now I can't get on a bus at all.

I can go exactly five places without a panic attack - the rehearsal studio, the social club for the blind, the association for the blind building, the Blueberry pub, and the Brickmaker's pub. Although with the last two I have to be with the guys in the band, or at least Darryl and one other band member (the other guitarist, Rob). I can't go if it's just Darryl and I, and I couldn't go if it were just any other band member, it has to be Rob. As long as both he and Darryl are there, I'm okay.
And none of these places I can go to unless I go in a car, I can't take the bus. Walking anywhere on the street is absolutely impossible. I used to be okay if I went with Darryl - but these days I'm not.
The last time I went to the doctors on foot (a twenty minute walk), someone the other side of the road sneezed, and I had a fully fledged panic attack and burst into tears. I was a total wreck. I can't go to any of these "safe" places in a car without Darryl.

So why is this ? Well, I've always tended towards agoraphobia even when I had all my eyesight, but I fought through it and did stuff anyway. Many visually impaired people are afraid to go out - understandably, as for someone who can't see shit, the world is a potentially dangerous and unfriendly place. I am not able to have a guide dog for now, which I was pinning a lot of my hopes on. That really took me back some steps, agoraphobically speaking. I hate walking down the street with that fucking white stick - it's all people see. Holding it hurts my hands and arms. I am bad at using it because I have weak grip in my hands. And with the stick, you make contact with obstacles. This can sometimes be a painful shock if you're not expecting them.
Anyone reading this blog from way back will also know that my neighbours are also arseholes, one in particular is aggressive and horrible. So that might explain my reluctance to go into the garden. Darryl also had some issues with local kids last year who were giving him and Otto shit, and with people trying to give him grief in the street as he went about his business. They are ignorant twats, we all know this, but it has made me afraid for his safety as sometimes they've been aggressive. As a result I get the shakes every time he travels between my house and his. I feel sick and get scared. He has to call me the second he gets to his house. I am becoming agoraphobic by proxy !

I am in constant pain and constantly fatigued with the fibro, which makes one not want to go out. Or I am so drugged up with pain meds a lot of the time that I am too confused to go out. My one saving grace is that I can go to places I feel safe in, and with people I feel safe with, if I go there in a car. Performing on stage at the Brickmaker's happens to be a bearable thing. I am surrounded by four guys I trust, and of course Darryl is one of those. How I could quantify that I can do that but get the shakes when I have to take the bins out to anyone else, I just don't know, so I don't bother trying to explain anymore.

So I think in retropsect this blog will more likely be about those things. One day I hope to get a guide dog. When my Jalen is no longer with us, which I hope will be in many years from now. I do wonder these days if I will be able to cope with the pain well enough to handle a guide dog, and I have promised myself that I will fight the agoraphobia when the time comes and just do it, like I used to when I could see properly. With a guide dog by my side there will be no excuse. I won't allow myself to have one.
But until then I'm just going to have to come to terms with my weird existence - I can't go to the corner shop and I burst into tears at loud noises in the street, but I can do a gig at the Brickmaker's. And if I can somehow stop beating myself up about that, everyone else will just have to accept it too, and anyone who doesn't understand that will just have to go fuck themselves.