We don’t really have a clearly defined fall season in Western Australia. It just goes from ‘bloody hot’ to ‘hot’, with interspersed periods of back up to ‘bloody hot’ and suddenly it is winter rain time for eight weeks (if we are lucky). Then back up to ‘hot’ etc.
But I can always tell when it is autumn because I have a built in barometric system in the form of my arthritis and yesterday it was announcing the glory of the cooler months with added fanfare.
I get so bad tempered when I am in pain. I have been very lucky in that my disease has mostly been quiescent over the last ten years or so and I was optimistic enough to hope that it would stay that way. The thing about anklyosing spondilitis is that the pain comes when active inflammation and fusion is happening. Once those bits of your spine, or your joints are fused together, the pain stops because the nerves are no longer being crushed in the process. You lose sensation and mobility but you also lose the pain and I think it is a fair tradeoff. Well, I do when I am in pain. Afterwards, I forget how bad it was and I regret my loss of mobility.
(On a side note here, I was crushed the other day to realise that my husband, the person I am supposed to be closest to in the world did not have any understanding at all of my situation as a individual living with a chronic arthitic condition that affects my life every day. We’d been talking about bicycle riding and he suggested that it must be getting easier for me now I was going to the gym regularly. I looked at him for a few moments and then I burst into tears.
What he actually meant is that I found bicycling difficult because I was fat and unfit. He somehow has never taken it on board that I am limited in the things I can do, not because I am overweight (not morbidly obese, for God’s sake) and unfit (I exercise four to five times a week) but because my hips, sacroiliac joints and the lower joints of my lumber spine are fused.
We’ve been together three years and it hurts me a lot to realise that he has always probably thought of me as fat and lazy. Part of is probably my own fault because I try very hard to minimise day to day whining (instead I whine on the net) but part of it is definitely his fault. And it makes me wonder how many other people judge me, too? If my beloved husband, who lives with me every day, automatically assumes my limitations are weight and inclination related, probably most people would.
I sat him down and tried to explain. I said that every day, in some small way or in some big, I experienced pain. That exercising for me was never going to be something I looked forward to because I would never know which part of my body it would stir up and how much pain I would be in after. That I could never do cardio work properly because I have only half the lung capacity of normal, due to rib fusion.
I’ve often said that I don’t particularly care about my body image and I always thought this was true. But maybe it isn’t so true. It seems as though I do care about how people regard the process that brought me to the shape that I inhabit. I want to tell people that it wasn’t bad choices that brought me here and it isn’t bad choices that keep me here: my body results from the genetic lottery it was dealt and I just try to keep it running as smoothly as I can along the way).
Anyway, it appears that my lumber spine (I think the thoracic is already fused although I haven’t been scanned in 10 years) is starting in on the action. If this continues on up into the neck, I will lose my ability to turn my head. Lose that and I lose my driver’s licence and my job. It hurts so much to force my neck to turn but I am doing it, five times a day. No wonder I am cranky.
Sorry for whining but don’t want to download this onto real people and depress them. It will be better tomorrow.