It's been quite a year

Well.. It's the last day of 2012, and I find myself reflecting back on the year I've had, as I'm sure many of you are doing. Or you're already drunk. Either way, fun times!

So, I thought I'd write a post talking about my year, and my goals for next year. Not resolutions as such.. just things I would like to achieve.

A lot happened for me this yeas, as I'm sure it did for you. It started with my ex-step-dad Dave (it's complicated I know) telling me he was planning to move to Queensland, which I took... not so well. He had, for a long time, been the main father figure in my life, and had always been 5 minutes away, if not in the same house, for the past 16 years. So needless to say, it wasn't an easy goodbye. We've stayed in touch.. but not as much as I'd like.

Skipping ahead while I'm on the Dad bit, in the middle of the year I got back in touch with my "real" Dad as it were, Kevin, who lives in New South Wales. I haven't seen him since my wedding back in 2009, and I hadn't talked to him for about a year and a half at the time I decided to get in touch with him again. I'm glad I did, because we've managed to re-kindle a friendship that we hadn't really had for a long time. I think he sees me as an adult now, which is good, and we have some health issues in common (he wears a caliper on one leg and has trouble walking and what not), so we have a common ground we can always talk about. Which is great. I had a lot of fun going to stay with my Dad when I was young, and I'm glad we've got past the issues we had.


So back to the beginning of the year. Only a few weeks after Dave left, my cat Sabbath got sick, and unfortuntately he had to be put down. That was just as hard, if not a little harder than Dave leaving, because.. well Dave is still alive!
As hard as it was, I know it was the right thing to do, rather than have him live in pain. Saying goodbye to him, and being in that room while the vet did what they had to do, was one of the hardest things I've ever done. But he got so many pats, and he was told he was a good boy, and the last thing he heard and saw was me. It's a hard thing when a pet dies. It makes me think of a Kevin Smith quote, when he was talking about losing one of his dogs early this year... "They spend basically their whole lives with you, but you can't spend your whole life with them".

I still miss him, but I have so many fond memories, that I usually am happy thinking about him. He would rear up on his back legs and rub his cheek on my leg, and he would get scared of his own tail and make himself jump... he was awesome.

It affected my other cat Rupert as well, he's become more attached to me, but he's also calmer these days. I think he was stressed out when Sabbath was sick, and it took a while for him to get past it. But he's much better now, and I think quietly loves being the only cat again.

In April, my mum and her husband Joe moved from Melbourne, up here to Ballarat. That was a big thing for me, especially after Dave leaving. My condition makes it such that having someone close by all the time who I can rely on in case I need help, or can't move, or pass out is a big stress reliever. Plus, it's nice to be able to have lunch at mum's once a week. Free food is the best food right?

May, was my birthday. Nothing much happened there.. just my birthday.

Oh, I know what happened in may. I began a relationship with someone. It only lasted two months unfortunately, but when things aren't right, they aren't right. She and I are still great friends, and even though things didn't work out, I wouldn't change anything. She's happy with her boyfriend, and I'm really happy to have her as a friend.

June.. well that's an easy one. The band got a name, and played it's first show. We ran through a bunch of names before coming up with The Savages... The Snowballs, The SavageRs, Bunch of Savages, and a few more.
Our first show wasn't the most amazing beginning. We supported a band that sounded nothing like us, and the crowd that was there weren't exactly there to see us. I distinctly remember saying the following: "So.. has anyone heard of Elvis Presley?" ... and there were crickets. Crickets! Oh, until one hipster idiot said in a stupid voice "Is he on australian idol?" ... ugh.. hipsters. We were also a four-piece for that show interestingly.

Since then however, we've become a three piece (and at the moment, a two-piece) and played some amazing shows, mostly in Melbourne. We played once in Ballarat, and once in Geelong at The Nash, just before it closed down. We played one of the final gigs at the Barleycorn in Melbourne as well, which was a lot of fun.

But the biggest show that we played, was in fact our last show we've played as a full band at this point. It was also the hardest show to make happen.

Last year we saw a band called Batfoot!. This was the band that inspired Curt and I to start a pop/punk band. So when we saw that they were coming back to Victoria (they are from New South Wales) we wanted to play a show with them. So we got in touch with Craig, the Bass player/singer, and tried to get ourselves a slot on one of the shows.

Craig managed to get us a spot on their geelong show, but a few weeks later, we found out that The Nash, where the gig was meant to be, was closing down, and would be closed about 3 weeks before our show was scheduled.

So with very short notice, I emailed every single venue I'd played gigs at just about, and had no luck. The closest we got was an afternoon gig on the same day our original show was scheduled for. So it looked like we were going to have to cancel the show, which sucked. Then, this great little venue called IDGAFF had a cancellation for the night our show was meant to be, and they gave the night to us with about 8 days to spare!

So all went well, we played the show, and had the best time. We've got plans to go up to NSW next year some time and play some shows up there with Batfoot!, and just generally hang out and have a great time. I personally can't wait to do that, it'll be great to play shows up there, being that I lived up there until I was 10.


We also have plans to record our first EP/Album (depending on how many songs we get recorded) early next year, possibly even next month. Also, we'll be getting our first batch of Savages T-Shirts early next year so that's awesome too!

Also this year I applied for a Bachelor of Arts degree at University, and I got in. Unfortunately, after having a look at the campus, and how the classes worked, I basically figured out I physically couldn't handle that and the band. And being that the band was just getting on it's feet when the course was going to start, I decided to defer for now. I have until the end of january to decide if I want to start this semester, or defer it again, or just pass on the course altogether.


Some smaller things that happened... I bought/got 3 new guitars due to the Allans music store in ballarat closing. They had 3 Left-handed electric guitars left, and I got all three of them! Two squier strats, one being an affinity series, and the other a standard series, and one Schecter Omen. I absolutely love the Schecter, I only paid $315, reduced from $550. It plays like a much more expensive guitar, and is near perfect. I do wish I'd had the money to buy the next model up, which has coil-tapping (turning the humbucker pickups into single-coil pickups.. technical I know), but I'm so happy with the one I got.

I reached (and passed) walking every single day on my treadmill for a year. In fact now, I'm up to around 520 days. The next goal is 600, and obviously then 700, and finally 2 years. I'm thinking I may take a day off when I get to 1000... but I doubt it.

I finally got a gigging amp as well. Without it, playing in my band would almost not be possible. It's the loudest thing I've ever played through. Most of the time I have it on about 3 (out of 10) and get told it's too loud.

I got a laptop that lets me play minecraft without it overheating. As well as a lot of other things that it does well.

I also gave up alcohol completely, and stopped drinking caffeine.


Oh, and of course, I got a new car. My mum held a raffle through her social club, and they raised about $6000.. and I finally got a car that works, with air conditioning, a cd player, power windows... all standard things these days, but to me, having never had those things before, I finally feel like I have a modern car.

So that's my year basically.. ups and downs yes, but more ups than downs definitely, and especially in the second half of the year.

So thanks to all my friends and family for being awesome, especially my best mate Curt. And my Mum.

Also thanks to all the new friends I've met, you guys are all awesome and I'm so glad to have met you.

That's it really, I hope everyone enjoys their new year celebrations, stay safe, please be careful on the roads, don't drink too much, don't drink and drive.. don't sit on a firework as it's going off.. and most importantly have fun!

See you all in 2013!!

P.S If anyone lives on a state border where there's a time difference.. tonight you have the rare opportunity for time travel! Jump back and forth over the border.. and you'll be in 2012 on one side, and 2013 on the other! Spooky!!

Hair today, blonde tomorrow

Hey folks, it's blog time again, but I have a feeling this won't be quite as long as the last few posts.

This isn't going to be any long discussion on my condition, or a rant or anything like that. Just a bit of a revelation that I've had today.. more specifically this evening.

Today, I decided to re-dye my hair. Sounds boring I know. And really.. it is. But the point of this post comes after the hair dyeing, so I figured I should tell the story, un-exciting as it may be.

For a while now, I've had my hair so that one half has been bleach blonde, and the other either a dark brown, or if I've not dyed my hair for a while, my natural hair colour. I like it because it's different, but to me it's not too out there. Also it looks a little like Two-Face from Batman, and being that I love Batman.. well, it's just another tick in the pros column.

Before the blonde, I'd had a multitude of colours in my hair, all just on one half. Blue, red, purple, green.. you name it. I'd dyed it all brown for my best friend's wedding last year, because I was in the wedding party, and needed to look "normal" for the photos.

So as I said today I decided to re-do the blonde side of my hair. Nothing interesting here.. aside from the result not being the way I wanted it to be. It turned out a little brassy. I wasn't sure about bleaching my hair for a second time, and I'd nearly run out of the powder that I use as part of the bleach. My other option was to dye it one of those colours I'd mentioned earlier as I had some of the tubes of colours left over from last year.

I chose the latter. And this is really where the point of this blog begins.

I dyed my hair a mixture of blue and purple, similar to how I'd had it a couple of years ago. Which, incidentally, was about 6 months after my then-wife had left me.

So about half an hour ago I was sitting here, and until that time I was happy with how it looked, I was showing my friends, and putting pictures online. Then suddenly a wave of anxiety hit me.. Initially I thought I was worried about going out in public with the "strange" hair, and more specifically going to the cricket next month with probably 50,000 people and me being the only weird one with strange hair.

I then thought maybe it was because it wasn't what I initially wanted to do with my hair, and I thought it might be quite hard to get my hair back to the way I really want it.

But, as is usually the case, it took talking about it to someone to figure out exactly what was making me feel anxious. After all, I've had my hair like this before, so it shouldn't bother me to have the same colour in my hair. I've also walked around in public with green, purple and blue hair (all at once) and not cared.

Then, I figured it out.

As I said earlier, when I initially decided to put some blue into my hair, it was just after I'd gotten my hair cut short for the first time in about 5 years, which was around about August 2010. My wife had left me in May 2010. I figured out that the cutting my hair, and to an even larger degree dyeing it a "strange" colour was, at least the way I see it now, an "I'm moving on" statement, and a time in my life where I was dealing with a lot of things changing and having to basically re-start my life.

Fast forward two and a half years later almost, to tonight, and I have moved on, and my life has become a lot more stable, and I'm very happy with how everything is going. So, dyeing my hair blue, as trivial a thing as it is,  has felt like a step backwards.

It's a strange thing, the way our minds work. Aesthetically, I think it looks really nice. It's a nice deep blue, with some purple patches as well. I like this combination of colours, and yet, it makes me uncomfortable to have my hair like this. So I've decided to dye my hair back to one colour for now.


I know this isn't the most interesting blog, after all, it's just about dyeing hair. But, the psychological side of my day interests me.. not just that my hair being a certain colour brings back feelings from a couple of years ago, but just in general.. how certain songs, smells, images, anything really, can instantly take you back to a point in your life where things were very different. Sometimes good, sometimes bad. I guess it's all part of life.. and for now, I can't have blue hair.

The weird thing is, I didn't really want to dye it this way again in the first place.. I really should listen to my instincts more.



Ok so I'm sorry if that was a bit boring. Hopefully there will be something interesting happen soon and I'll be able to write about that. This one, honestly, was more for me.

I'm not like you: Part 3 (re-post)

Well, I said there'd be a part three to this.. so now no-one can call me a liar. Are you calling me a liar? Yeah.. you.. in front of your computer... well no more!



Ok...that was a weird intro.

So this is going to be the third post in this series (it's a series now) of posts I've done about my condition, and how it affects me. Now, this isn't a "oh.. everybody needs to feel sorry for me because I'm different" thing, I don't feel sorry for myself, so why should anyone else? Nor am I saying that my problems are any worse or harder than anyone else's who has to deal with disabilities or impairments. This is simply my way of getting information about my condition out there, and also maybe give my friends a little more understanding about all this stuff.


The other thing that I distinctly remember from writing the last two posts, is that I actually cement things in my head by writing them down, and in a way, I learn things about myself by writing about them.



So it's been about a year and a half since I wrote part two. I've learned quite a few new things about my condition, and made a few new changes in my life to help better deal with it as well. And for the most part, it's all been a success.


One thing that I'm not sure I mentioned in the first two posts, is about headaches. I used to suffer regular migraines, and do still occasionally get them. I get really bad pains in my neck which radiates up to my head mainly. But, the reason that I used to get them so much was because of my hair, and how long it was. Tying it back 90% of the time put extra pressure on my neck (as I'm sure it does for everyone else), and adding that to the muscle aches and pains, made getting a headache quite an easy thing.



So I guess that's an explanation for people who didn't know as to why I cut my hair off a couple of years ago. That and well.. your wife leaving you makes you want to make some changes after a little while.


As I said, I made some changes in my life to help with my condition. The first was that I made a pact, or a commitment, to get on my treadmill every single day without fail. And since I decided that, I have walked on that treadmill no matter what, every day for 518 days. Some days I've only managed two minutes, or five minutes, but for the better part, I've been doing my 30 minutes every day.


I can't tell you how much this has helped. Actually, I have a blog, so I can. I can boil it down to this. If I hadn't started that, and walked every day for as long as I have, I wouldn't have a band. I physically would not be able to handle playing gigs. I'd be in so much pain. I've talked before about things like cleaning my teeth can wear me out. Yeah, it can, when I don't stick to my exercise.



Let me just clarify though, the walking doesn't build fitness. Things that people without my condition wouldn't think twice about, like a shower, or doing the grocery shopping, they still wear me out. The walking builds conditioning and stamina to allow my body to function better. So I may get tired out, but I recover quicker, and I've also noticed that I can do things for longer, like playing gigs or rehearsing, and even the grocery shopping doesn't tire me out quite as much.


That was the biggest change definitely, but I've made some smaller ones. Diet is another big one. This one is really recent actually. I was talking to a vegetarian actually (don't get me started.. ) and they were trying to tell me I should find vegetarian alternatives for my protein.. after I'd explained that it HAD to be animal protein, not things like nuts, or tofu or any other vegetarian crap. (seriously, don't get me started.) But she asked me why it had to be animal protein, and I had no answer other than "That's what my specialist told me". I had theories though... I thought maybe it had to be animal protein because it's made of the same stuff my muscles are made of essentially.



But I wanted to find out more, so I was researching diets associated with my condition. What I came across was really interesting. It turns out that a high protein but also high FAT (yup.. high fat) diet tends to work well for people with my condition. And, I can totally attest to that.


Let me give you an example, because I'm sure you're sitting there going "if you eat a high fat diet, you're going to get fat".. or "but there's good fats and bad fats"... or "you're just using it as an excuse to get an extra quarter pounder, fatty". Well, let me tell you something, my normal bodied friends...

When I got back from New York in 2006, I weighed about 115 kilograms. I made massive changes to my diet based on the information from my specialist, but because I was (and am) on a limited budget, I couldn't get lean meats in big enough quantities. Remember, I have to eat 500 grams of "animal protein" a day.. at least. That is the equivalent weight of 4 quarter pounder patties plus the cheese.


So my diet consisted of those Twiggy Sticks (salami sticks essentially), very little bread, as much protein as I could get for dinner (I think there were things like homemade pizza.. but it was 6 years ago..), but my main point is, every 3 days or so I'd have McDonalds. I would have a Big Mac, a Quarter Pounder, and a McChicken.


You're all sitting there saying "that's too much take away". FOR YOU IT IS. But I'll get to that.


For me, it worked. I ate a high protein, and, without really meaning to, a high fat diet. I walked on my treadmill 2 out of every 3 days for only 10 minutes each day (not as much as I'm doing now), and in 6 months, I went down to 100 kilograms. So all your "too much fat" arguments are invalid.


Now this is where I get a pet peeve of mine off of my chest. Yes, eating take away is bad. Yes, a high fat diet is bad. But the problem is, every single person I've discussed this with is looking at it from a "normal" person's perspective. Your bodies work properly. Mine does not. It (in my opinion) has compensated for that by being able to process fats and protein better. I look at it in the same way as a blind person's other senses are heightened. My body's ability to process, and use up fats is "heightened".


But even if that's not true, studies have shown that a high fat diet works for people with my condition, and I have shown myself that I can lose weight, even if I eat higher fat foods. So, please, anyone who reads this, don't come to me with your ideas about what I should eat. I've tried everything you can think of.


I will also point out that I had a cholesterol test done during this year. The result was a cholesterol level of 3.5 which is at the lower end of normal. Again, your too much fat argument is invalid.


That's another thing. People say to me "you don't have to eat take away though.. you should cook more". Ok yes. You are correct. But how many of you get tired from preparing something to put it in the oven, let alone bend down to put it in the oven?


I've had a lot of suggestions. And, I know they're coming from a helpful place, but again, it's coming from a place where people don't have to think about energy conservation within their own body. Someone I was talking to a couple of weeks ago suggested I cook all my meals at the start of the week, and that way I'd have enough food and wouldn't need McDonalds. This is absolutely true. But I don't have the energy to cook 14 meals, or 7 meals at once. Take away is easier than cooking. I know it involves driving and that seems counter-intuitive, but I know how my body feels, and when I'm feeling tired, driving is easier than cooking and preparing, because I drive more often than I cook. It's all about conditioning.


Incidentally, I've lost about 3 kilograms in a month, trying out this high fat, high protein diet. So it works.


The other change that I made in my diet is to allow for a certain amount of carbs every day. Originally I tried to cut out all the carbs, but I'd found that I was hungry a lot, and also I felt better once I began to eat between 100g and 200g of carbs a day. Really the only thing I worry about with my food these days is the quantity of carbs that I've eaten for the day.

The best example I can give you for this working happened a couple of days ago. Christmas day. I spent it with my Mum and her husband Joe. We had roast pork and turkey, vegetables, and some christmas desserts. There was some leftover pork, and Mum gave me some of it to take home for dinner. So, that night, my evening meal consisted of pork, and turkey. That's all. No carbs, just protein.


I managed to walk 15 minutes on my treadmill before the pain got to be too much. And that whole night, I ached more than I do normally, and everything just felt worse.


The problem is with protein, is that you absorb and use it all very quickly. There's no storing it for later. This is basically the crux of what makes my condition hard to manage, and also in some cases, so debilitating. Carbs are broken down into glycogen, which is stored as energy for muscles. My body doesn't do that, so I have to get energy from protein mainly, which does not store. Fat obviously does store, and I'm learning a bit about how my body uses that. My theory at the moment is that the reason I can lose weight with my diet, is because there's no carbs stored to be used as energy, and once the protein is gone, my body starts using the fats. For a normal person, the carbs would be basically the only thing used, and maybe some protein if they'd had it just before exercise.


So I feel like I've found a diet that works for me, and as long as I stick to my exercise, I will lose weight and reach my goal, which is that 100 kilogram mark.


The other main change that I've made is that I've totally cut out alcohol and caffeine. The caffeine is more to do with stress and anxiety issues, but the alcohol was for my condition. One drink and my arms and legs, and shoulders and neck all burn and ache, and I get really hot and red, and basically it makes me feel awful. But, aside from it being a lot better for my body, I also got inspired by a new(ish) hero of mine, a wrestler by the name of CM Punk. He lives a straight-edge life, which basically means no alcohol, drugs, or cigarettes. There's a bit more to it than that, but that's the basic idea. (for example, vegetarianism sometimes goes hand in hand with straight-edge.. but I can't do that, nor would I if I could). I'm not one of those preachy people who would tell you that you shouldn't drink because I don't, but I just choose not to put those things into my body any more. Everyone else's body is their own business.

The other thing that I wanted to write about in this post is pain tolerance. For a long time I've found it hard to understand, sympathise, even empathise with others when they are in physical pain. I'm sure this was just because of my condition, and being in a constant state of pain. Even as I'm sitting here, I have pains in my back, my jaw, my hands, and my eyes are a little sore. (Eyes have skeletal muscles, therefore are affected by my condition). I'm actually thinking about getting my eyes checked, just to make sure I'm not just fooling myself thinking that tired eyes are because of my condition. I can see everything fine, just not as clear as I should be I don't think.


But back to the pain tolerance thing. I can remember a lot of times my ex was in pain, be it a headache or a toothache, or some kind of pains in her leg or anything really, and I would make sure she was ok, but in my mind I would be thinking something along the lines of "Oh, you can't be in that much pain".. I had a real "suck it up" kind of attitude.


I'm not proud of that of course, but all I can say is that I was dealing with a lot of pain on a daily basis. I feel like that has pushed my pain tolerance way up, and what may be a 6 or 7 out of ten for someone else, would be a one or two for me. I handle pain pretty well, I mean, a kidney stone for me was about an 8, and it should be a 20 out of 10 from what I've been told.


I had a conversation with my Mum about this a couple of months ago. We talked about everything I just mentioned, about not being able to understand people's pain, feeling disconnected from it, feeling like they couldn't possibly be in that much pain, because to me it wouldn't be that bad. But, from talking about it with her, we figured out that the pain scale is a relative thing. Your four out of ten may be different from your best friend's four out of ten, but you still understand relatively how they'd feel. And to me, that was a bit of a revelation. Maybe I've just finally grown up properly though.


Wow, this is a long post isn't it? Ok I'm nearly done I promise. I mean, it has been 18 months, so you knew going in this wasn't going to be short.


The last thing I want to talk about is playing gigs. I'm actually hoping some of my new punk rock friends will read this, because it's quite hard to explain why I can't move in the back rooms of pubs and clubs with music blaring and people's ears already ringing from being on stage, and I want them to know why I leave early, and why I'm so exhausted after I finish playing. I swear, sometimes I must look like Meat Loaf after I finish.. I've heard he passes out sometimes.


I love playing shows. This last six months, playing shows with my best friend next to me, playing our songs we've spent multiple hours working on, refining, surprising each other with little ideas... it's simply amazing. And the reaction to our music has been 99.99% positive... ok there was one guy who called us lame.. but screw that guy.


But gigs are also the hardest thing I do. Again it's the little things that people don't have to think about normally, like how close the parking is, what time we're on vs what time we leave, how high off the ground the stage is (it's hard for me to get up onto high stages without steps, and even harder to get down), how long our set is, and, as I said in part two, crowds and things like that put me on edge a lot too.


I have the same issues with acoustic gigs as well, but to a lesser extent. We tend to have some longer breaks between songs, which sometimes annoys people I'm sure, but it's purely to give me a little rest so that I can play the rest of the gig.

I do sometimes feel bad though, when I'm playing full band shows, and we leave before the last band finishes. Sometimes we've left as soon as we finish playing. In fact, I remember one gig we played, Curt (my best friend) and I turned up about 10 minutes before we were supposed to start, so we walked in and walked straight on stage, played, and we'd left within 15 minutes of finishing the set.

Now, this is partially because we play a lot on week nights as we're just starting out, and Curt has to work the next day and we have to drive back to Ballarat from Melbourne, but it's also because I'm so spent physically that I can't stay. And that's what I feel bad about. We need to support each other as musicians, but I can't always. I also am not the most animated on stage, but that is simply to conserve energy for singing, which is what I find the most tiring.

I wouldn't change any of it though. I absolutely love the music we're playing. I love that it can be played acoustically, or plugged with a full band. I love that we have fans, and I love that I've made a whole new bunch of friends. The punk scene feels really inclusive. No matter what style you play, people are into it and are friendly. Aside from that one guy who thought we were lame.

The plus side is we have an awesome title for a new song. "Sorry for being so lame".



So that's it for this instalment. I'm considering starting a video blog, maybe once a week or something to talk about general issues and also give updates on my weight and band and what not.. but I don't know how much interest people would have in it. Let me know if that's something you'd like to see.


Thanks for reading, and as with last time, I'm sure there will be another part to this eventually.

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.

I'm not like you: Part 1 (re-post)

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.

Blog move.

Hi everyone,
This is now where my blog is going to be. I've used blogger for another blog for a while now and I've found it a lot easier to use than wordpress. I'm going to leave the wordpress blog up still, but I'm going to re-publish some of the posts on here. So for the first few posts, it won't be anything new to you people who are coming over from my old site.

For those of you that are new and want to see some of my previous writings, the site is http://snickety37.wordpress.com/

I'll write a new post soon however.

Until then,

David