I don’t have classes until 1pm, but I woke up after getting a phone call from my boyfriend (he just wanted to say hi before he went to school) and now I can’t get back to sleep. I’m restless. I suppose it doesn’t help that there is background noise – my landlord runs a day care during the day – normally I’m not affected by it, but today I am.

Luckily for the most part I’ve been getting a good night’s sleep each night. My bed is comfortable, possibly more comfortable then the one at home for some reason. I don’t know why, considering my mattress at home has a pillow top (which is a really comfy extra piece on top) and this bed doesn’t (and if it does it isn’t as thick). Oh well, I’m not one to complain if comfortable!

My computer chair is far from comfortable though. It’s making my upper legs and bum ache. I’m feeling that bone under my left leg coming in again, which sucks because when I had it removed last time I lost a lot of blood. I don’t want to loose anymore, and it’s in such an awkward position that it made sitting and lying down painful (since it’s on the back).

I can remember my doctor’s words when I first met him. “Oh you are done growing, so you probably won’t need anymore surgeries!” Pfff. That’s just wishful thinking on both sides. I would like to be able to say I don’t need anymore surgeries, but I hate discomfort and being in more pain then I usually am, so I would take the surgery to lessen that pain and find a little bit more comfort.

Sometimes I fear that I complain too much. When I was at Sick Kids, I worried that my doctor thought of me as a whiner, not brave at all. I’m not claiming to be brave or anything, but I definitely don’t want to be a complainer in people’s eyes. So for the most part, I clench my teeth and bare it instead of making a doctors appointment to deal with my thousands of complaints and concerns. My new doctor didn’t seem to keen on talking about future possibilities for surgeries, so it’s going to be harder with him.

Plus it’ll be harder with myself. Trying to convince myself to actually book a surgery, that is. New Doctor is, well, new to me. He’s never preformed a surgery on me or even ordered x-rays. Granted, I’ve only had one visit, but still. What’s new is scary and unfamiliar.

I also don’t want to slow myself down in college. I made a slight pack with myself that I would hold off on surgeries and even complaining until after I graduated from my two year program. It can’t be that hard, I just hope my body will cooperate. Sometimes it doesn’t, but I really don’t want to miss any time. I’m trying to go for “perfect attendance”.

My MHE has always been an awkward subject with new people I meet too. They tend to ask a question that would spark the need to explain my medical disability, such as “why do you walk that way?”. Once I accidentally roped myself into having to explain when the girl asked me if I received any bursaries yet. Without thinking, I told her that one I got at commencement… the Heather Rebeka Lodge award, which was awarded to me for overcoming challenges and completing my high school education and going on to attend college. She wanted to know what challenges I overcame, so I told her about being short 2 credits due to circumstances and working extremely hard in my final year to be able to graduate with my classmates. Again, she wanted to know what circumstances they were, and again I told her about my two surgeries months after each other.

Anyways, I’m still making slow progress being 100% comfortable and sure of myself. I don’t know if it’s just my personality that causes me to be this insecure, but it’s slightly annoying.

I have to go finish the summary for chapter one now, and I suppose I should have did the summary for chapter two as well in Introduction to Psychology.

I am deeply sorry that I’ve failed to update my blog lately. It’s far from abandoned! I have just been super busy! The last week of August I was away at a residential camp with the recreational group for the developmentally handicapped that I worked at. The week was long and although it was fun, it drained my energy fast. It didn’t help that it rained almost every other day. The weather was damp. My bones ached the entire time. Luckily I was in a cabin with electricity and I was able to steal the electric heat blanket from the nurses cabin during cabin time.

It was my third time being at that particular camp with the members of the recreational group. Only this time, I had far more responsibility. I was the summer student and the cabin leader of my cabin. Not only did I have to run events and activities each day and ensure that everyone was having fun and doing their parts, but I also hosted most of the cabin troubles on my shoulders. On Monday, three of our volunteers left so it was just myself and one volunteer in a cabin with four members. We made out well enough; our members had fun and got the care they needed, but it was still stressful.

Although there were a lot of funny camp moments, when home time came I was relieved. It was such a long, stressful week for me and I couldn’t wait to drop my title of authority and relax. Of course it couldn’t be easy, the 7 hour bus ride was even more long what with all the things that just had to go wrong. For instance, bus #3 broke down 20 minutes after we left camp. We had to squish all of the people onto the other two buses, and it was a tight fit.

After I got home, I barely had time to relax. The next day I had to go into work one more time before leaving for school to do my evaluation on how I did this summer. It went pretty well, I think I have a job next summer – if I want it. I’m not too sure though, the truth is that this summer was really hard on me – physically and emotionally. I let the stress of the office problems get to me, and that didn’t help the physical stress my body was under. Camping 3 weekends in a row was hell on my bones; I don’t think I’ve recovered yet.

The very next day (the 1st) I went to the annual summer birthday party celebration (this year at my grandparents house). I visited with my family from out of town for a while, then decided to steal one more weekend at my boyfriend’s trailer, since I knew I wouldn’t get the chance to when school started. On the 2nd I moved the rest of my stuff into the apartment, and then on the 3rd at 9pm I officially moved in to the basement apartment that I’ve rented out for the school year.

The 4th was my “first” day of college, but not really considering it was just an orientation where they held a couple seminars like Essential Services, meeting your Student Adviser, and learning how to use the student email portal. Things weren’t really exciting until the 2nd day of actual classes, when I started to make friends.

I take the bus to the college everyday, and I walk around the school carrying a pretty heavy bag. My shoulders ache and my back aches, so does my legs from walking around so much. I don’t want to push around a trolley, considering there are so many stairs and it wouldn’t really help out at all. Those book bags with wheels only cause more problems when you aren’t wheeling them around because they weigh more. Needless to say, I’m not too sure what I can do. Lugging home 5 textbooks and my binders doesn’t help either, and it’s not like I can have 2 sets of textbooks like I did in high school, college text books cost a lot of money.

If anybody has any suggestions for me, feel free to say them. It’s only week 2 of college and I’m exhausted already; we’ve barely started our work load! The current work load is good, all I really have to do is read chapters of the text books so I actually know what’s going on in the lectures.

I also have switched to Aboriginal Emphasis, so my schedule is going to change around ever so slightly. I’m pretty excited about it actually, Aboriginal culture has always interested me. Next weekend a local reserve is having this huge Pow Wow and inviting anyone interested in going to it, the theme is Healing Through Laughter. I’m going with a couple of people from my program.

And that is what’s new in the life of me. I’m still trying to settle into college life and draw a line between school work and play time (because everyone knows you need play time in college or you’ll snap). I so far love my program and the people I’ve met are all cool and interesting in their own ways. My physical pain isn’t holding me back too much at the moment (knock on wood) but we’ll see as time goes on. I should probably start intervening anyway and making changes to the things I’m doing wrong (such as carrying around such a heavy bag load and walking around too much) but thus far I’ve been unable to solve my own problems (since I need everything I’m carrying around and I can’t have them move classes just for my convince).

But I’m liking it, and that’s the important thing!

My job is stressing me out. It’s crunch time; only two more weeks left and the last week will be a 6 day camping trip. I’m cranky, I’m exhausted, and I’m not happy. I love my job, I just dislike the politics and drama. Planning events and recruiting volunteers is fun; I get paid to camp, how awesome is that? But there are people on my team who would like everything to be done their way, and that’s just not how a team works. There are people on my team who don’t listen to my opinions, my suggestions, my needs.

For instance, putting me on the wheelchair bus is a bad idea. I am physically unable to lift the wheelchair members without hurting myself or more importantly, them. If something bad happens during the seven hour long bus ride up to camp, I will not be of any help. I’m supposed to be the staff member on the bus. This does not make sense to me. I wouldn’t feel comfortable knowing my own physical limits.

I spoke to my boss, and he sees my point. Finally. I wouldn’t have gone to my boss had the person who made the bus assignments listened to me when I pointed that out. Instead, he argued with me saying nothing would happen and I would not have to lift a wheelchair member at all during the trip. However, he can’t grantee that, and technically the rule is when lifting someone in a wheelchair you must have a staff with you, so I couldn’t tell two volunteers to do it either. Because it isn’t safe. I know how to do wheelchair lifts, but I physically cannot. If someones safety wasn’t potentially at risk, I wouldn’t say a thing.

It’s irritating me how my medical disability is holding me back from so much. This is the field I wish to work in, yet I’m unable to do a wheelchair lift. I’m working on it, and training to do it in ways where I would not hurt myself at all. I’m not a very strong person, and my bones aren’t very strong either. I never understood that aspect about MHE; you have a lot of bones but their fragile, or at least mine are. That’s no fun. Where’s the use in that?

The important thing is that I am working on finding ways around my MHE. I now know my physical limits, and I won’t push myself to do something that could result in jeopardising the safety of someone else and myself. I’m not an idiot. I won’t allow that to happen. I’m not only speaking about the now, but also about in the future. I won’t do stupid things to satisfy co-workers. It just ain’t gonna happen. My word – when it comes to my physical limits and health – is law.

I wasn’t so smart before. I used to push myself to do things to satisfy other people. When I worked at Tim Hortons, I ended up hurting myself really badly several times trying to satisfy my bosses and co-workers. I couldn’t lift the cream bag to change it without hurting myself, but I knew my co-workers were sick of doing it for me. They didn’t know why they were doing it for me, they just thought I was lazy. So one day I did it myself. I ended up dropping it on the floor after hurting my wrist really badly. I also fractured my ankle at school. It was Track and Field day and the teachers were notified that I couldn’t participate in the event. They told me to volunteer at the Shot Put game and pick up the really heavy balls. I ended up fracturing my ankle in one of the holes that the really heavy ball left. All these things (and more) happened because I didn’t speak up.

So from now on I will.

I hate those nights when you can’t sleep, even though you are exhausted. I can’t seem to get my brain to stop thinking so I can sleep, I’ve been thinking so much that I gave myself a headache. There is just so much going on right now, so many thoughts and worries and concerns.

One of my concerns is that MHE really is making me crazy. Maybe it isn’t the chronic pain, but maybe its the always feeling like your uncapable of doing more. You push and push your body until it breaks but it still doesn’t feel good enough because other people are doing more without straining themselves.

I have tried my hardest to not be lazy, even though my energy gets used up very easily. I drain energy fast, I am definitely not an Energizer Bunny. If I was a battery, I would be the cheap dollar store one that drained after 5 minutes of use. I am so sick of never having enough energy to do everything I want. I want to do everything they can. I want to be able to lift heavier things and work all day without being in so much pain and without being so exhausted.

How do you break out of this constant layer of self-doubt and judgement? I critize myself more then other people critize me, I know that…I just can’t stop it. I don’t know how.

I should think about planning another surgery; should think about writing down the aches and pains and telling the New Doctor about them. Maybe he could fix them so I have more energy and strength, but I doubt it. It seems like with every surgery and each passing year I loose more energy and strength, and I didn’t have a lot to begin with. I’m worried about my bones fusing, I don’t know what that would feel like and my left ankle has been locking up for the past year and a half now. I’m not sure why, and I’m worried it could be because of fusing.

I worry about a lot of things. I wish I could learn how to relax.

My first ever Wilderness Weekend was this weekend. My head is still pounding. Needless to say, I am glad its over. It didn’t go bad presay, I mean for the members at least. They seemed to have fun, so did everyone else. It was me who didn’t have a lot of fun.

It wasn’t the sleeping on the ground, that wasn’t too bad actually. Dad picked me up a rather expensive self inflatable mattress that allowed me to get a couple hours of sleep. I was still pretty worn out though – its hard work. I honestly wasn’t expecting it to be such long, difficult days. Feeding 30 people and making sure they are all happy is hard, especially when two board members are there judging us.

Also, other volunteers don’t listen to me. Nobody really does. I got a lot of questions as to why I’m a Summer Student. One of the volunteers (who happens to be dating one of my co-workers) even made a casual “joke” about the difference between “working and getting paid.” It seems like the entire weekend was a joke on my behalf. Jessica isn’t good at this, or she’s not doing that.

What really irritates me is the fact that we are understanding of our members needs and limits, but not volunteers. I was a volunteer, and I am now a staff. People still don’t understand that I have a medical condition that limits my mobility and affects my strength. It may appear that I am being lazy, but I’m not. I work as hard as my body will let me, and as much as I would hate to admit it, its not as hard as other people can work. I find people got annoyed with me because I couldn’t help load the van and I wasn’t much help with taking down the dining shelter. They should know. They should understand. But they don’t.

If you have MHE, then you know that if you have it “bad enough”, then working is hard. As I’ve previously mentioned, MHE affects your mobility and limits your strength, so working is difficult. I work at a place were I’m on my feet running around all day long. It’s recreational stuff, programming and what not. It’s hard, especially when you have volunteers who are lazy and don’t want to help out even though they can. It’s harder still when nobody listens to you because they don’t hold a lot of respect for you because they think you too are lazy and not working hard enough.

I don’t know how much longer I can take being dictated to and bossed around by people who are at the same level of position as I am. I don’t give a pooh about them “being there longer” or “being older” then I am. Sunrise is supposed to be a happy place where nobody judges. Volunteers do nothing but judge. Actually, so do most co-workers and board members.

Three more camping weekends, then one more week long camping trip.

If you’ve ever experienced pushing your body to its limits and not getting anything good out of it, you’ll understand this post. Since February I’ve worked my bony bum off at my co-op, because I knew all along that I would be applying for summer student and I wanted them to see how hard of a worker I am. Not to mention, I needed every hour to count so I could graduate this year.

But my body is tired and it feels like I’ve proven nothing. Yes, they appreciate all that I’ve done. Yes, they appreciate the fact that I’m in here every day while the other co-op student calls in sick 99.9% of the time. But it still doesn’t seem to be enough, because Greg keeps talking about the really awesome nursing students they’ve interviewed. I can’t compare to a nursing student, I’m only in high school. All I have to offer is my goals for the future, my ability to work hard and stay on task, and the fact that I’ve been here forever and know the members. Plus that I’m self driven. I can complete tasks on my own or in a group. But I’m also just in high school. They already have a high school student, and they like him a lot because he knows what he’s doing and they don’t have to train him. They would have to train me.

One of the reasons why I really want this job is because I won’t have to stand for long periods of time. I’m already doing all of the work the summer students would be doing and my body – for the most part – is handling it well. I’m tired because I am pushing myself to come in everyday, but I need to break my body in and get used to coming to work everyday.

Hopefully all this hard work will pay off. I should know by Friday.

Sometimes, I wonder if theres something seriously wrong with me. When I have my downs, they’re really down. I could be just hanging out with friends and suddenly I’ll feel so insecure about myself that I almost cry. Almost, but I don’t, because my friends or whoever I’m with might think I’m a crazy if I did.

Although other times I think I’m perfectly normal, I mean its normal for any girl to feel insecure about their body. Even if its one little thing, like having pimples. I find comfort in that, because if everyone feels insecure sometimes…then its okay for me to feel insecure, right?

I’m much better then I was a few years ago, I know I’ve spoken of the days when I would only wear long sleeved shirts and baggy pants. Let me tell ya, not good days. The school was always so hot and stuffy and I was too insecure to roll up my sleeves, let alone wear shorts or a skirt.

Although I still find it awkward when people point out the huge ugly scars on my arms, I find it slightly more comfortable to dress for the weather. If its hot out, I no longer wear baggy heavy jeans and long sleeved shirts. I still tend to stick to wearing jeans but I do wear t-shirts now. I still don’t like wearing skirts because my MHE is very noticeable in my legs, more so then my arms. Plus I did wear peddle pushers to school one hot day in grade 9 and went home not even 20 minutes later because I was paranoid that everyone was staring at my legs.

I still get paranoid about people staring at me, thats why it makes me uncomfortable to have strangers stare at me. I know that everyone does it without knowing, I know I do it too, but it always makes me anxious if strangers stare at me too long.

I wonder if I would feel more confident if I was a guy. Generally they don’t care about other people judging them. Girls are crazy insecure about stuff like that. I know a lot of guys are too but most of them have that “I really don’t care” attitude. I admire people with that “I really don’t care” attitude. I want that attitude. I’m still trying to get it. I’ll let you all know when I succeed.

Winter and I don’t get along, we really don’t. Winter is cold while I like to be warm, winter is full of hazards like ice and snow. Oh ya, did I mention winter is cold?

Ya I know, I live in Canada; I should be used to it, but I’m not. I hate it more and more with each passing year. I think snow falls are pretty only if I’m safe and warm inside my house. I’m sure many people are like that.

My bones also hate winter. Which is believable, seeing as everyones bones hate winter, but mine really hate winter. Just yesterday I was hanging out with my boyfriend and his friends and they wanted to go for a walk to get to my boyfriends work so he could pick up his tips, and then go to one of their houses. My boyfriend lives right smack dab in the middle of both destinations, and I had to walk all the way down to the restaurant with my boyfriend and one of his friends. But by the time we got back to my boyfriends house, my bones were killing me. My hip kept cracking from the cold and my ankles were sore. So we didn’t end up going to the other persons house.

I hate walking in huge groups, because I feel like I’m slowing them down. It also seemed like I was mad because I wasn’t talking; but I’m not much of a conversationalist when I’m freezing cold, aching, and trying to prevent snot from running down my face.

It took the rest of the night for my bones to thaw out, and then I woke up 2 times last night because my ankle had [very painfully] locked up. I hate it when my ankle locks up; its sort of like a cramp but not really because its more of the bones locking up then the muscle. It hurts just as much though. I think its because I have a tumour on my ankle thats gotten pretty big. It never used to lock up.

But today my ankle is sore still from locking up. So oh joy. I just know when I leave the warmth of our house to venture outside into the cold, it will lock up again. I have to run errands today at my co-op too; shopping for the clubnight and dance, so yet again I will be slowing people down.

I hate slowing people down.

I know everybody has their insecure moments; but lately I tend to be having them a lot more. I don’t know why, or even how these insecure moments are brought on. Sometimes they just appear out of no where – hitting me hard from the side or somewhere I don’t expect them to hit me.

Usually when I have these insecure moments, they appear out of no where and they are almost always MHE related. I’ve been dating this really amazing guy for nearly six months now, and I still doubt what he says. After all, my last two breakups where MHE related – the one guy said after he dumped me that he was the best I could do with my “nasty bone thing” (well, he turned out to be wrong…the guy I’m dating now treats me amazingly) and the other guy said he was breaking up with me because I couldn’t “physically keep up” – he liked working out, ATVing, and a lot of other stuff I couldn’t do.

I’m trying to do something about it too, because I hate how I am – always doubting people and being negative (although I like to look at it as facing reality) but it’s hard. Sometimes I can vanish my insecure thoughts and get on with my days, but other times it’s really hard. Sometimes I feel so weak for thinking bad thoughts about myself – like I can’t do this, or they don’t really like me.

Maybe I am weak. I hate being insecure though. It’s annoying for me and those around me.

Yesterday, I stayed home from school (my stomach was – is actually – hurting a lot. I blame Captain Crunch Cereal) and halfway through the day I found myself bored with nothing to do. I had already finished an entire project that normally would have taken me several hours – I was so intent on finishing it that it was finished in half an hour.

I started cleaning up the family room a little bit, picking out the stuff that was mine and needed to go downstairs to my room. Then I found my yearbook from grade seven. I started flipping through it to read what people had wrote. The instead I flipped it open, I saw a little comment that read “Crippled Lady! Hava good summer!” by a kid in my class.

I decided to do a test, to see how many times people said that to me over the years. At least 3 different people said something along those lines in each of my yearbooks. Gimp was mentioned, “Broken Leg Girl” was too. It’s interesting though, because none of those kids meant to be mean, they just thought they were sharing a rather funny inside joke with me.

But I didn’t find it funny each year when I took home my yearbook and read things like “It was nice seeing ya when you were actually at school, Broken Leg Girl. Have a good summer!” I found it rather depressing. If I ever have kids, and if they ever got their hands on my yearbooks then they would probably think I’m really pathetic or something, and feel sorry for me.

I’m kind of mad that each year I paid 60 bucks for a yearbook only to have it littered with sayings like that. Now isn’t that something you want to look back on years later? I swear to God, if someone writes something like that in my grade twelve yearbook, I’ll flip and throw them all out.

I dislike how my disorder has become an “inside joke” with my peers.