Yeah, I know I said that I'd have heaps of posts up ages ago...but I just haven't got around to them. It's all down to me being lazy, but I hope to have something else up soon.
In the meantime, this here is a post regarding my condition. For some time now, my mother's been suggesting that I make an appointment with the doctor so I can talk about my condition and get some information on how to deal with it, since it worries her that I have no-one to talk to about it. I mean that's the downside to having a rare condition - not a lot of people have it and because of that, there aren't many support groups in, what would be for me, a conveniently accessible area. I don't like travelling too far from home just to go somewhere for an hour, and since I live on the outskirts of the countryside and city, it makes it a little harder for me when you factor in petrol prices and public transport costs.
Tomorrow, my mother has the day off and suggested to me yesterday that she'll make the appointment and come with me to the doctor's because I mentioned to her about my goals and ambitions sometime last week, and my fear of not being able to accomplish them due to the time limit I have. I don't even know how long I have before I'm no longer in a position to do the things I want to, and so I don't really want to waste time doing things that won't help me in those goals. It doesn't help that I work 4 days a week, volunteer 1 day a week and my weekends and any free time I have are used working on small things and catching up with my TV. I think it's time for a timetable or something, you know, like allocate an hour or so a day doing something like working on my would-be novels and comics? Yeah, I think that'll help...it just requires me to discipline myself and gather whatever source of motivation there is within myself. It kind of worked last year, until I hit Artist's Block...
Anyway, I'm not sure how I feel about my appointment tomorrow...I mean, just what can the doctor do? The specialist that diagnosed me, in retrospect, did a crappy job. All he had to say was that I should "Prepare for the future," and ushered us out the door, without so much as providing us with reading material on how to deal with the inevitable or information on support groups. I guess I'm pretty angry about this, I mean, he practically threw me into the deep end and left me alone to learn how to float. So far I've been doing okay, I think...but then, I wouldn't know. I might feel like I'm doing fine, but someone else may think I'm not. It's true that I don't talk about my feelings on the matter; it's mainly because I don't want to come off like someone hunting for sympathy. I don't want to be one of those people that sits on their ass crying about their lot in life and how useless it all is - sometimes I feel that way, but then I shake myself out of it. That's not who I am, and it's not who I want to be. I want to be proud of my life and to not have any regrets.
Another reason why I don't talk about it is, because I don't want anyone to worry...especially my mother. Her health isn't the best, and she has more than enough things to worry about - she doesn't need me whining about my situation. But then, I also understand that while for me it feels like I'm being strong, my silence on the issue may worry her because she has no idea how I'm coping and whether my answers are honest or not when she does pluck up the courage to broach the topic.
More than anything though, when it comes to my mother, I don't want her to feel helpless or start blaming herself. My condition isn't anyone's fault...it just happens to be what happened. There was no way for anyone to know that this was going to happen, especially since no-one's ever been diagnosed with this in our family before. I wish I had some magic phrase that could make her feel better and know that this is something that I will never complain about. I might curse it and there will be times where I just want to self-destruct, but ultimately...I don't blame anyone for it and it's just one of those things I'll have to adapt to and deal with at some point.
Going back to the topic of support groups - I don't know if that's something I'd consider joining. If I were to, it's not sympathy I'm looking for or a self-esteem boost...what I do want is some life experience; someone who's going through this to share with me their views and experiences and how they dealt with it. I say this because, I joined a support group on FaceBook and frankly...while the people are nice, I don't feel like they're helping all that much. I wrote about that incident with the police woman and all I got were floods of sympathy and pats on the backs, but nothing to actually help me deal with it for the future.
We'll see how tomorrow goes...I'll definitely be writing about it.
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