Sometimes it sucks
Today’s session at the gym was not without incident. I overheated in the pool and had to literally drag myself on my walking-aid to the changing rooms to cool off, which wasn’t fun. You see, I walk in fine, gaily swinging my walker about in the air, then after the exertion of the swimming, I have to lug myself out the exit, barely able to lift my feet. I think I’m a bit of a side-show there. Although no more than the poor guy who carouses the circuit in his wheelchair, for whom I have immense respect. Maybe people respect my effort of lugging myself up and down the pool, I don’t know. I do find it mildly amusing, though, when people (management) talk about me to my dad (in the third person) when I’m standing right there.It always surprises me, as in my head I have not been cast in the role of the disabled person, but that is of course what I am. 4.5 on the EDSS scale. On a good day.
The whole episode has given me a bit of insight into how people feel, who have a disability. Previously, when confronted with a disabled person in, say, a shopping centre, I largely used to ignore him/her, as I would ignore any other strange person going about the business of shopping. Mind you, I still do that, because now I know how irritating it is to be stared at with that mixed expression of curiosity and sympathy. (I don’t like to draw attention to myself, so I appreciate it if other people just let me get on with it) I do, however, have a feeling of comraderie with fellow Ama Kroks (the affectionate term given to members of the SA paralympic team, which has now grown to include any member of the disabled community). I know how they battle, because I have battled and still do, though to a lesser extent. People equipped with a fully functioning body will never understand this, and why should they? But from my own personal experiences, I would say that people with disabilities just want to be treated like everyone else, but also that people respect that they need special parking spots and toilets to make life a little easier, and please not to make use of these facilities thereby blocking them from using them. Well, that is how I feel about it, anyway. I feel like a bit of a fraud, because as I said, I’m not really disabled in my mind’s eye, and for large parts of the day, I masquerade as normal. But today’s episode at the pool brought home to me that this is far from true. I hate feeling so helpless. I battled hugely to put my shoes on and haul off to the bogs. I try and block it out and just carry on with it (not hard, as it requires immense physical effort) but on reflection, I look at that person, almost objectively, and think, “Hell. That can’t be easy.”
The crux of the matter is that I need cortisone. I’m in relapse territory, once again, and it sucks. It’s a familiar sucky feeling though, so I’m not wasting too much emotional energy on it. Next Tuesday is my neuro appointment, and then I’m free to take the stuff. Well, after I’ve used my persuasive powers to convince him that I am indeed having a relapse. He wasn’t that pleased with me last time, after I elected to change the dosage of the course. Bad Maggie. And I have to say, he was right. The 1 gram just wasn’t enough, which is why I’m sitting with this now.