I'm not like you: Part 2 (re-post)

It's been a little while since i wrote anything on here, but, there's always more i could explain about my condition. Writing the first part actually helped me understand what i have. Every day i learn a little something more about what i have, just by living. Like, "Oh, If i spend too long putting wax in my hair and working it around, my arms hurt".


So just to update a few things, I got a new treadmill, and it's amazing. Thankyou so much to the Steve Waugh Foundation (who also gave me a grant to buy a freezer), getting the new treadmill means i now have the ability to get back down to a weight i'm comfortable with, and also, store a lot of healthy food, rather than rely on processed meats and takeaway to get my protein serve for the day.


I'm trying to be more active, to do more things, the way things work with my body is in essence "the less i do, the less i can do". So by being more active, even if it's just playing guitar every day, or singing every day, or even going to gigs more, as well as my walking, I will be able to eventually handle staying at a gig for more than an hour or so.


I went to a gig on sunday, and sure enough, right around that hour mark my legs were killing me. I'm not sure what it is that causes it exactly, I was just standing there. But all i know is that by the time we left, my legs were feeling terrible. And also, I was woken up the next morning by a massive cramp in my calf muscle.


I should point out, comfort is a big thing for me. I'm not just talking about sitting in a comfortable chair, i mean, i tend to feel uncomfortable at other people's houses, at restaurants, at pubs and clubs. I don't necessarily mean physically uncomfortable, i just mean i suppose mentally uncomfortable would be the right term? But regardless, that in turn makes me physically uncomfortable because i don't relax, so my muscles are tensed up and i feel like i have to act "normal". Don't ask me why, i have no idea. Everyone wants on some level to fit in right? Even people who rebel, "goths', emo kids, punks, everyone fits into a certain group. It's hard to find a group of "people who have a rare condition that can't be diagnosed as yet".


So i spend a lot of time at home, some people see that as unhealthy.. "oh you need to get out more".. well to that i say, spend a day in my body, and tell me what you'd rather do? I stay at home, because it means that i have the energy to occasionally do other things.


Things that don't seem essential to "normal" people, such as Dvds and Video games, these things provide me entertainment. Think about your day, maybe you have a job, maybe you study, maybe a business. But that would take up the greater part of your day right? Now, imagine all of that time, for a whole week lets say, so that's what.. 40 hours or so (if you work 8 hours a day) .. imagine that time being spent not working. Just at home. You would need a lot of things to keep you entertained. For me those things tend to be my Laptop, my Dvd collection, and my Gaming. Also Pay Tv. I tend to watch a lot of sport as well, a lot of different sports. I used to play cricket, and soccer and basketball when i was growing up, and i can't imagine doing that now. So i have to "live vicariously" if you will, through watching sport and playing video games. I can't run around and play soccer, but by having FIFA 11 on my xbox, i can get a similar feeling. Also, going back to my original point, it passes the time. Spend 40 hours sitting on your couch, and you'll know what i mean.


So, to my friends who read this, I am trying to get more active, I want to be able to come round to your place occasionally, rather than the other way around all the time, but it's taking some time, and i know not all of you completely understand what i have. There are a couple of you that get it just about as well as i do though, and i appreciate the help you give me and everything.


On that subject I also really appreciate the help my mum gives me. She comes up here (to where i live) from Melbourne each fortnight, partially just to see me, but also to help me with my housework. Sure, i keep my house clean, it's not that hard if you just make a little effort (hehehe), but the bigger jobs i need help with. So thankyou.


Ok before i get to soppy i'm going to end this. I'm sure there will be a part 3 of this eventually, i'm always learning new things. Like, don't eat too much chicken. your foot will swell up.