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.


  1. I totally relate to the connection between chronic physical illness and agorophobia. The trouble is that everything takes so much more energy, and dealing with everything, from crossing the road to talking to people, it can just feel too much - and when you do make mistakes, drop things, crash into things and perhaps especially when you get into a muddle dealing with people, it can be such a knock to your confidence.

    Whereas, I couldn't do it, but I can understand how performing well-rehearsed songs with a band of friends, even in front of a crowd, might actually involve less risk.

    I am fine much of the time, but I get set back with the agoraphobic type stuff during periods when I've been more physically ill, after I've had knocks to my confidence and got out of practice. My main advice would be to do as much of the things you do feel safe(ish) doing as possible. On-line social stuff keeps me from acquiring the sense that I can't deal with people. And little trips out with my nearest and dearest, as soon as I am well enough, gets me ready for when I get stronger.

  2. I think you've really summed it up there, when you talk about well rehearsed songs in front of a crowd as less risk. That is exactly it for me somehow, but I am not sure exactly how that is. We're about as well rehearsed as they come (I've been in the band a year and a half, so we've had plenty of practise !) and the weird thing is - so far we've done two half hour slots as tasters at the local music haunt, but neither of them went exactly smoothly, but it didn't faze me or make me panic in the way I expected it might do.
    The first was done on a day about a year ago when I had had an extremely upsetting phone conversation with my solicitor. I am going through a nasty, acrimonious and threatening (from the other side) divorce that has been going on for over two years. I was a complete mental wreck for that day before the first gig-let. I don't remember the performance at all but I do remember feeling panicky, sick and shaken after speaking to the solicitor (not uncommon). I do recall the bass player, who has been twice divorced, telling me to just go up there and give it the berries. Which I must have as the management asked us back again.
    The second slot we did was before Christmas just gone, the drummer fell off his stool and cut "All Along the Watchtower" short by the last verse (which confused the audience I think, to say nothing of my bandmates --- but hey, I wasn't singing by that point so it wasn't down to me, lol) and half way through the set I got a dreadful shooting pain in my eye which made my eye totally stream and fairly disoriented me even more than I was already. It was like being stabbed in the eye with a hot needle. I often get these. Usually I clap my hand to may face and have to go into a dark room to ride it out. But I just carried on, snot streaming off my chin (sexy !) and even made some banter on mic about having eye technical issues. And even spoke (apparently quite eloquently) to someone (don't remember who, a stranger) afterwards who came up to congratulate us. This is all I remember really.
    Perhaps it is true to say that on stage, we can be different people, despite that being a cliche. I'm not sure I know who I am on stage, because I don't remember enough about it to know. My hope is, the more I do it, the more I will remember it.