A day to be glad to be indoors, the wind out there even for a wheelchair user, would be lethal, mind you a well held rain cover could act well as a sail. I wasn’t a great outdoors user of a chair, after several over exuberant trips into town when I fist had my chair, proved totally that the world isn’t wheelchair friendly, what it did do for me was let me work. Many of the so called aids I have had over the years have actually landed up little used for the purpose that they were given to me, like my perching stool was first used not to allow me to cook, but as a safer and more stable way to climb onto the kitchen counter so I could open and close the window, or reset a clock. Before you blood pressure rises out the top of your head Adam, that was a really long time ago. Disability turns you into an inventor, you find new ways of doing everyday things, ways round what you can’t do and ways of getting them done by someone else. *smirk* But what it has taught me more than anything, is just how wonderful life really is. It is ironic that it took me being ill and housebound to understand that this is it, there is no retakes and no rewinds, but strangest of all it made me love life even more, just for that very reason. There is something exiting about having to get it right all the time, something compelling and exhilarating in knowing that I have already lived several completely different lives and this is just another one, and one that has stretches me more than most. I just wish someone had told me this when I was 16, mind you what 16 year old listens to anything.
I have thought about it a lot, thanks to the messages I get on twitter and here, just what it is that people are picking up on to make them write so many lovely thing back to me, I clearly have had to make a guess at it, as we can’t think for others, but I guess it is my love of life despite of my situation that makes so many follow me. It is a love of life that I know wasn’t always there, it feels almost as though because I didn’t get the message from the normal life others led, that I was walloped severely by my health to try and wake me up before I missed all of it. Well I now understand, could I just have some normal boring normality for a while please.
I don’t know where it came from but I have had this headache for the last few days, headaches are something I have never been greatly bothered by. Everyone around me at work would moan about them and beg for medication that I couldn’t give them, but for myself to go on an aspirin hunt, well I don’t actually remember ever doing so. It has been two nights in a row that I have gone to bed and lay there listening to my blood rush in my left ear, while the pain in my skull throbbed in time and just for good measure I felt rather nauseous as well. Unlike the pains in the rest of my body, it isn’t one that I can relax and lessen, not like a leg or arm spasm. I know the brain is a muscle but I haven’t actually got to grips with the tensing and relaxing of it, I know all to well how to aggravate it and send it off on impossible missions, but relax, no. Sitting here at the minute, all I can hear is a touch of tinnitus, a side effect of so many years in the music business, no throbbing, just a constant ache. So it has changed just not to the point I hoped of gone completely. Earlier this morning just after I got up I did have an optical migraine, so I guess my blood pressure is slightly raised as I can think of nothing else that would cause this selection of symptoms. High blood pressure in itself is odd for me as I am a life long victim of low blood pressure, great if you like to causing a stir, by hitting the floor at odd and unusual times, otherwise well of no importance at all.
While I listened to the rushing sound that was fluxing in volume last night I was also trying to settle the rest of my body in to a state to go to sleep. It is actually really useful having something odd happening, as it does help to reduce the impact of the normal. I don’t think I have ever been distracted enough to forget about pain totally, that may sound like an impossible statement to make, because if I had been totally distracted, I wouldn’t have known that anything was different. None of my body is ever what I would call normal any longer, I can remember not having pain in parts of me, but not for a very long time. At it’s best, as I would say my arms are at the minute, there is a tightness and background ache that is almost like they are telling me they are still connected to me, I hope that makes sense. I had headed to bed after watching Panorama, another distraction, but it was one of those nights where I kept loosing parts of myself. It was one of those nights where I had two opposed sensations at the same time, the normal pain was there but wrapped in a shell of numb. It was the numb that was distraction and I kept waking myself up again to just check, check were my limbs actually were.
I knew where I had put them, but they were telling me there were somewhere else totally. The arm which was supposed to be a couple of inches away from my side, was telling me it was hovering 2 or 3 inches above my stomach. The messages from my other arm and both my legs were just as mad! It is actually quite disturbing loosing the actual location of your body parts, in some ways I have always felt really lucky that it only happens at night, as that feeling of total distrusts of the information my nerves are giving me, well it really odd. There is no way round it other than to make them move just so you can reset their location. When I woke today I tried to get up, at first it was really hard and it took me a few seconds to sort out what was happening. I have for months now grasped the side of the bed as a way of lifting myself of the mattresses, but it wasn’t working. So I lay back down and tried to sort out what was wrong, nothing came to mind so I tried again, suddenly I knew what was wrong, my hand wasn’t anywhere near the side of the bed and I trying to pull myself up by grabbing at the duvet. My limb location was off by about 4 inches, OK I was just waking, it was to put it mildly confusing. I had to move each limb independently before I tried again, it may be a one off, but it was at the totally wrong end of the day, and totally out of the norm.