Identity Crisis

Having a bit of a crisis of conscience at the moment, after some really weird - and pretty darn creepy - comments.  Basically, I've been thinking about how a lot of people use the Internet to hide behind, like these so called 'trolls' that abuse others on twitter, because they feel they have the right to say anything, and it won't get traced back to them.  The whole point of my blog was to be as honest with my readers as possible, yet, I don't use my real name… And therein lies the problem.

When I first started writing, I figured it would be much easier to be myself if I wasn't myself; i.e. I used a false name. That way, I felt I could be honest about my life, without worrying about having any fallback, or offending anyone I know – not that I would deliberately. It's like, when you have counselling; it's much easier to talk to someone who's not part of your life, who won't judge you, because they don't know you. That's what this blog is to me, kinda like my therapy. I've already explained at great length why I chose the pseudonym of 'Bad Wolf', and I still stand by what I said back then. I like the anonymity, and I like being able to keep this identity separate from the persona I portray in the real world. Otherwise, I am 100% honest in what I write here, and my twitter account – also under 'The Bad Wolf' - is an extension of that.

Yesterday, I got it into my head to screw what anyone else thinks of me, and connect all my accounts. So I went about connecting my twitter back to my Facebook, and allowing NetworkedBlogs to post on my Wall/Timeline. But then I thought about it a bit more, and talked to The Wife, and today I've gone back and reversed all those decisions; except one, which I'll reveal in a minute. Maybe I'm a coward, and shouldn't be bothered about what anyone thinks of what I write, but I am – bothered, I mean. It's like I said in 'I'm Fine'; there are certain people I can be honest with, and tell how I'm really feeling, but for the other 99%, I give the default 'I'm fine', and it's those that I don't feel comfortable in letting read my blog. Stupid, right? My blog is public, for the whole world to read, yet I don't want [certain] people I know reading it. I think, if I always had that worry at the back of my mind, that friends and family may be reading this, then it would hinder my honesty, and ruin the whole point.

It also helps that, after a lot of thought, I've kind of pinned down what I want out of this blog, which maybe I hadn't really thought about before. I want it to be a platform for me to express how I'm feeling, how I'm coping with my day-to-day life as a spoonie, and any worries or changes that may occur, and I hope that, in turn, I'm providing a bit of support or insight to those of you reading this. I find it really difficult to talk to people, apart from a select handful, so this blog has proved useful to me, on a selfish level, for understanding myself, and working a few things out. I welcome comments, and criticism, and would love to hear from other spoonies, or friends/family of spoonies, just to know someone is on the same wavelength would be brilliant. On that note, in future posts I'm going to try even harder to talk about my life as a spoonie, and how my condition - Brittle Bone Disease - affects me, in the hope that anyone else with a similar condition, or spoonies in general, will at least feel that they're not alone. I'm also going to make sure to write more about film too; it's not all about me, and I need to make the effort to write something a bit academic, after four years of studying the subject.

But, while I want to remain anonymous, I feel that I should give you all a bit of myself, a smidgen of my true identity, in order to keep that balance between the completely honest 'Bad Wolf,' yet be an identifiable and empathetic personality. So, from now on, call me Katie.

KT xxx

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