10/04/2012

Trapped

Bank holidays suck, don't they? I find them so boring, and there's never anything to watch on TV either. It wasn't helped this weekend just gone that mother went out for the day on both Saturday and Monday, leaving me [with father] to amuse myself. Not easy.

I don't begrudge her going out at all; she definitely needs some space away from me, and vice versa. But I do find it difficult when I'm effectively confined to my room for practically a whole weekend. As mother is still my main carer, and the only one able to move me, if she goes out first thing in the morning I have to stay in bed till she comes back; otherwise if I got into my chair I'd be there for hours, which I couldn't do. In an ideal world, I'd have a hoist set up, so that other carers could come in and help me out but this is yet to be the case.

I know I shouldn't complain cos, compared to some, I have it relatively easy. I mean, I'm not in constant pain, I have the support of my parents, particularly my mother, who does everything for me, including driving around the countryside, and I have a lot of friends. Maybe I'm just a bit narky because I couldn't do what I wanted to do at al this weekend; it wasn't about me. Not that I had any plans, but the fact I couldn't make any even if I wanted to was quite a depressing (?) thought. I think it's just times like this remind me how limited I am, and how dependent I am on other people. I can't go anywhere without okay-ing it with my mother, who I might be relying on to drive me, or SB, my enabler, who may well have plans of her own. Even if I can go out with SB, I can only do that at a time that's convenient with my parents, as we only have one car. My car.

I guess I feel trapped by my disability; not a new sensation, but one that I try to forget about, and get over as much as I can. I've talked about freedom on here before, or lack of it, and it really is, for me anyway, the worst thing about being a spoonie. I don't really mind being disabled from any other perspective, it's never bothered me that I can't walk, ride a bike etc etc, though I'd much rather not have Brittle Bone Disease. But it is not really stop me doing anything major, like getting an education, having good friends and so on. I suppose maybe I'm being a bit glass half full, as I know I'm going to find it difficult to find a job, and the whole relationship thing is a total nonstarter.  What I'm trying to say is, I never, ever, think 'I wish I wasn't disabled'. Ever. Maybe when I was younger; as a child watching everyone running around in the park, or fixing up sleepovers, yeah, but not now. Suppose eventually you get used to not having certain things, not being able to do certain activities, and there's no point missing something you've never had. Right?

No, the only thing that bothers me about being a spoonie is not having that freedom to say.' I'm going out, not sure when I'll be back'. Such a simple statement for the majority of non-spoonies, one that most people don't even think about. I do. A lot. I can never make plans on the spur of the moment; ring a friend in the evening and arrange to meet the following day for a shopping trip, pop out to the town, go for a walk on my own around the park. Dead simple things like that are what makes it difficult to be a spoonie, and when I’m left 'on my own’ it serves as a reminder - like I need it - of what I can't do. As I said, and as is obvious, there are many things I can't do, but I don't dwell on these, and I don't [think] I feel sorry for myself either. Similarly, nothing's gonna change either; it's impossible. Even when I have 24-hour care from people I pay, and have a car to myself, I'm still never gonna be able to do my own thing, or go out without making really tight, military plans.

Am I OK with that? No, not really, but there's nothing I can do about it, so stop moaning. I've just gotta focus on the things I can do and, for one thing, I thank my lucky stars every day that I'm at least of 'sound' mind… Well, kind of. I really don't know what I'd do if I couldn't hold a conversation, couldn't read or study. Then maybe I'd have something to moan about, which I didn't intend to do today. Obviously I don't have enough on my mind at the moment; need to start researching that PhD. I shall endeavour to not complain at all in my next post.

BW xxx

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