So, the afformentioned blog on my disability. It's really hard to explain something when there's not a lot of information on it, but i'll do my best.
I try to give people a basic idea of what my condition is, but it's still hard to understand the limitations i have because of it. What i have is called a Glycogen Storage Disease, of which there are roughly 14 varieties, and so far no-one can tell me which of the varieties I have, with the exception of telling me I don't have the one that would have killed me before i was 5. Which i had already figured out, being that i'm alive. Anyway, what it means is that my body can't process carbohydrates and sugars the way it's supposed to. There are a series of enzymes, in a chain that break down carbs and sugars into what our muscles use as energy, and store it for future use. My body is missing at least one of those enzymes, so the process doesn't work. Because of that, my muscles can't get what they need to work properly.
This means i have weaker muscles, and a lower capacity for physical exertion. it also means i have to have a different diet. Which is a high protein/low carb diet. not a no carb diet, which is good, because it's hard to find a lot of variety in just eating meat. But the protein isn't stored as energy, so i have no reserve of energy in my body. If i do overdo it physically and there's no more "fuel" for my muscles, they start to break themselves down and feed on themselves basically, which can lead to something called Rhabdomyolosis, which can in turn lead to kidney failure. so it's kinda serious.
Unless i told you, you wouldn't know that even when i'm just sitting on a chair talking to you, usually i'll have at least 2 or 3 areas of my body that are aching, hurting, or some other kind of sore. for example, right now i'm sitting on my couch with my feet up, and well.. from top to bottom, my neck is sore, my shoulder hurts, my arms are aching, my fingers hurt, my butt is sore, my knees hurt and my feet are burning and sore. that's a normal day for me.
So that's one reason that i would have trouble finding a job. I think some of my friends feel like i should work, even though i have this thing. But i'm in the most comfortable space i can be, with the exception of bed, but still that hurts, and all of those parts of my body are sore. Try and imagine that in yourselves, and then put yourself into an uncomfortable location. Sure everyone has little pains and niggles, but it's not the same.
One of the things i find the hardest to deal with is disappointing people because i can't do something that's been planned. I missed my best friend's engagement party because i had a shower and then for some reason i could barely move for 2 or 3 hours. I didn't go to sydney for christmas partly because of not being able to sleep in my own bed, and worrying about how much my back would hurt. But i'm learning to put myself first, and knowing what my limits are. Something i didn't do as much when i was married.
Before any kind of activity I have to do a sort of mental check on how i'm feeling physically, how much the activity is going to take out of me, and if it's too much. I don't just mean things like going to a friend's place, or rehearsing with my band/s. I mean anything. Having a shower, washing clothes, doing dishes, feeding my cats, doing shopping.. all the things that most people never give a second thought to, i have to.
Also because my muscles aren't as strong it puts more pressure on my joints, which gives me a lot of back pain.
I'm also susceptible to getting gout.
I'm not trying to have a whinge here, or get everyone feeling sorry for me (that's just low), I just want to try to explain my condition as best i can.
I have an excercise regime that i try to adhere to, unfortunately my treadmill seems to be on it's last legs at the moment, but hopefully i'll be recieving a new one as part of a grant from the Steve Waugh foundation. But this thing that i have makes it very hard to keep weight off, which, as a lot of you have probably noticed, has meant that i've gained some weight over the last 2 years or so. Apparently a little too much for certain people...
I really wish that i'd known about this when i was in high school. it's hard not being able to keep up with everyone else physically, especially in a country town where there is a lot of emphasis put on sport. Luckily though, my condition hasn't stopped me from being able to play music, and sing, although i'm convinced the struggles i have with singing are connected. It just would have been nice to have an explanation for why i couldn't run around the lake, or why i sucked at the beep test (who else hates the beep test!?)
Anyway.. i can't really think of anything else about this at the moment, i'm sure there is some stuff that i've left out, which will probably appear in another entry at some point.
So i guess, don't judge a book by it's cover, coz underneath could be something you don't understand?
Cheers.
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