When You Feel Like Nobody “Get’s It”

Note: I was going to write a post about all the updates since 2007, but this week happened. And I wrote this instead. 

Chronic pain is an interesting thing. You can feel it, oh boy you can feel it, but you can’t often explain it. At least, not to unwilling ears.

I’ve composed several Facebook statuses reading “someone, please come and walk the dog for me” that I’ve promptly deleted because I can just imagine the ‘advice’ I’ll get.

“Take the kids with you when you walk the dog! I do it all the time, it’s easy!” Well, yes. That does seem like the simple solution, doesn’t it? Trust me when I say I have, indeed, thought of that.

My dog weighs nearly 50 pounds. My toddler weighs about 25, maybe 30. My older son weighs the same. I only have a single stroller, which the toddler would have to sit in, because he is horrible at self preservation right now, and would likely laugh manically as he raced away from me onto the road. My older son tires easy, and his legs start to hurt after half a block, then he wants to get into the stroller too. He’ll try climbing into the basket, but it simply cannot support his weight.

Plus, when I bring the dog with us, I have to tie his leash to the stroller handle bars, wrap it around once and use my weight to keep him at bay. This is painful for me, and rather difficult. When he catches sight of another dog (which is always bound to happen), keeping him from taking off is incredibly difficult.

I have, indeed, done this before on more than one occasion. I’ve brought them all to the park. But after we return home, my pain triples and I am unable to do pretty much anything. Heck, that happens when I just take the kids to the park and don’t have to wrestle the 50 pound dog.

Right now, I can’t do that. I don’t have my regular evening help. On Tuesday afternoon, my husband was in an accident at work. He works at a scrap yard, and a dump track axel fell on him and pinned him to the ground. He tore every single muscle in his groin, has extreme soft tissue damage, and a small fracture on his pelvis. He is out for the count for at least a week or two.

Usually, my husband all but completely takes over when he gets home, because he knows how sore I am after a simple day “home” with the boys. He pretty much handles our younger, crazily energetic toddler while I put the older one to bed and snag a nice, hot shower. He will also get the toddler to bed, because our son adores playing the “up and down” game. He’ll claim he’s ready for bed, and once you get him up there, he’ll start crying and demand a bottle. He is relentless and does not stop screaming until you give in. (And yes, that is every bit as irritating and grating on the nerves as it sounds).

He is there to pick up the slack when I need a break, when my pain is too great. Except…he can’t right now. It’s just me, doing the work that we usually share. All day. Plus, I’m bringing him things that he needs, and I’m helping him.

So, I can’t walk the dog, I can’t take the kids with me, and I’m finding myself struggling to ask for help. I’m afraid that people will think I’m lazy (as they often do, because they don’t understand “chronic pain”).

The best way I can describe this to someone who doesn’t have a chronic pain disorder would be using the spoon theory. I need to save my spoons. This explanation typically works better than the “I have a chronic pain disorder” explanation, because most people really don’t understand chronic pain.

Still, a lot of people won’t get it unless they are forced to live with it or they see the affects of a chronic pain disorder for themselves.

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Independent

I’m seriously liking living “on my own”. For the first time ever, I feel slightly independent. I rely on the public transit system to get to school each day, and it’s my responsibility to clean up after myself, cook, and get on the bus on time. I’m even doing my own laundry, with a little instruction from my landlord; but her washer/drier is completely different from mine at home!

I am going to hand my resume in to a local group home which is quite literally down the road from where I’m living. The money is apparently good, and even if it’s not the best it’s still a familiar place and it’s still money coming in. I can start saving!

Yep, I think living on my own agrees with me! I have a feeling college is going to be stressful, but I know that I’m going to thoroughly enjoy it. This weekend I’m staying here so I can hang out with a couple new friends that I have made and go to a PowWow the local native’s are having for everyone to get a glimpse of their culture. It should be a really rewarding, interesting experience.

Recently I switched from Community Development to Community Development with an Emphasis on Aboriginals. I had my first class yesterday and it was full of promise for the upcoming year. I like the sound of things we will be doing.

On a completely different note, my friend Mandy (who also has MHE) will get to meet JK Rowling in NYC this year. I’m so envious! If only I had entered the contest with her! Except I think it was only for people in the United States. Oh well. Have fun for me Mandy!

Speak Up!

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.

Another Chapter

So my high school graduation ceremony was last night. I have to say it went beautifully. It was really nerve racking coming outside to see several bleachers full of friends, family and teachers. I almost died. I was fully able to picture myself falling flat on my face. Luckily, I didn’t.

I was deeply embarrassed halfway through the award part of the ceremony because I realized I wasn’t going to get an award. The few that I thought I would get ended up going to other people. So I stopped listening to the awards, and then guess what? I was called up to accept the Heather Rebeka Lodge Award that is awarded to a graduate student who worked hard and will be attending college in the fall despite obstacles. The obstacles they were talking about was the two surgeries I had last year that put me behind my classmates. Had I not taken co-op, I would be short two credits and I would not have graduated. Thanks to co-op, I was able to earn 2 extra credits and graduate with my classmates. I was award $200 which I put in the bank today.

Unfortunately thanks to co-oping all day, I missed out on having a social life. Most of my classmates enjoyed their last year of high school by attending several parties, going to school functions and just enjoying the high school life. I missed out on that. I was busy working. I missed out on one of the classmates finding a mouse in their pants, I missed out on several awesome get-togethers. I didn’t go prom camping, and I didn’t go to any of the Blue Jays games the popular kids put together because I wasn’t sure if I would feel weird or not.

The class valedictorian made me think about all the stuff I missed out on by giving her beautiful speech. I now feel guilty for assuming I would have a horrible year way back in September, because I could have made it better. Instead of making time for my old friends, I accepted the fact that they had changed. Ya, maybe a couple of them changed for the worst but I still could have joined in on the antics every once in a while. I could have made the new people to my old circle of friends feel included, I should have made my own friendships with them instead of assuming I had been replaced in that circle of friends. I should have skipped more classes, laughed more, attended more parties, gone to more school dances, and enjoyed it while I still could.

I sat through the Graduating Class Slideshow a bunch of people put together and almost started to cry. I missed out on knowing a lot of people. I was only in the slideshow twice myself, and I could have been in there more. Had I given myself the chance to fit in. I suppose you could say that I decided I was above silly high school antics, and in believing so I missed out on what could have been a really fun time of my life.

throwing hats

But that chapter of my life is over now, I have accepted my diploma from high school and in the fall I will be attending college. I’ve got everything set up; the cheques in the mail to secure my spot in the Social Service Worker Program and my first and last months rent has been paid for my apartment. I’ll be attending a Welcome Day in late July, and I’ll bring in all the stuff I need to get set up with Disability Services.

The tuition payment was supposed to be due today, but yesterday my dad and I drove up the college to explain our situation. The money had not come in yet; we were still waiting for the government to release it. They understood, and have given me until Friday of next week. Luckily, the money came in yesterday evening and the college will definietly have it by next Friday. My mom is planning on running it up Tuesday (since Monday is a holiday).

So everyone, I am no longer a high school student.

Not Hungry

I don’t know what it is about the summer, but I never seem to need to eat a lot during the day when its hot. I like eating smaller things throughout the day. Instead of bigger, heavier meals I feel like salads and fruit.

I have decided I am going to eat better and exercise some, because I am apparently very lazy. I suppose I could get myself in shape, but that will be hard since I seem to lack energy 99.9% of the time. I’m thinking maybe if I was in better shape I would have more energy? Or if I ate better? Who knows. I just want to have more energy and I want to try anything that could possibly work.

Maybe I’ll go for a walk after I write this post. I have to mail a letter to Mandy anyway, and I’m sick of being online. I’ve been online since I got home at like 4pm. Something is wrong with that picture, I know. I’ve been busy exploring my college website, busy trying to figure out how to use my student emailing account. On July 23rd I am going to the Welcome Day, and I’ll find out more about Disability Services. The letter finally came in the mail from my old doctor from Sick Kids regarding the documention on my disorder we asked for months ago. So I will finally get that business out of the way.

Wednesday I start working with a developmentally disabled boy. We are going to the mall and catching a movie. This summer I’m going to work with him and get him familiar with taking public buses, also I’m going to take him on a tour of the college he wants to go to. My sister works in the Student Services office and could probably help me out with that one.

And this Thursday is my high school graduation ceremony. A few hours of listening to other people accept awards and I can boogy on out of high school forever! I am thinking about attending the after party for a couple of hours with my boyfriend, just to say goodbye to the people I have gone to school with for the past 6 years.

I have this entire week off, and the Canada day weekend as well. There are some things I have to do, like buy a new bathing suit even though I’m broke. I can’t go to Wilderness Weekends without a bathing suit, especially if we are going to spend an entire day at the beach swimming. I suppose I don’t really need one, I could go into the water in shorts and a t-shirt, but I would rather have a bathing suit.

I also think I’m going to start walking more. Walking down the drive way, down the street, around the block. Its a lot of walking, I live out in the middle of no where.

I’m gonna start walking now, and maybe I can talk my parents into buying fresh fruit.

Batteries

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.

Pushing Forward

Have you ever had one of those weekends so full of ups and downs it felt like you were a part of a really bad soap opera that over dramatized everything? Ya. I just had one of those weekends.

Friday was a good day for me; it was my birthday, how could it have sucked? I spent it with my family and got cool presents. Saturday was a pretty decent day, I took the Non-Violent Crisis Intervention Course through work and learned a lot of valuable things. I also helped set up the dinning shelters for camp to see if we had all the pieces. Sunday was a completely different story. I was planning on going for the perfect birthday weekend where nothing goes wrong and you’re just generally happy to have reached the age of 18. I am still generally happy about being alive, but I’m completely bummed out at the same time.

Early on Sunday morning, Father’s Day, my beloved dog passed away. Shadow had been a part of our family for 8 years, and saying goodbye was so difficult. He was a major part of our lives, and I already miss every little thing about him. I miss him coming into the kitchen to bug me for a slice of cheese every time I opened the refrigerator, I miss him barking loudly every time I come home, I miss him sighing from boredom when my mom and I are on the computers instead of paying him attention, and I miss seeing him waiting at the top of the drive when we come home. That’s just a quick list of things I miss about him, the things I notice more now that he’s gone. The only good thing I have to say on that matter was that it was a quick death. I’m assuming his heart gave out as my Dad saw him in Kate’s room breathing rather heavily and tried to get him to come upstairs but he wouldn’t. Dad then went upstairs to put on a pot of coffee and by the time he came back down to check on Shadow, he had moved to the part of the hallway in front of my bedroom door and my parent’s bedroom door and died.

So Sunday really sucked for me. I was in bed completely out of sorts. I know he was a dog and to a lot of people who wouldn’t understand, there are worse things that could happen – and I am sure that’s true. But keep in mind that Shadow was a very important part of our family. He was one of us. I’m going to miss him a lot.

Monday afternoon I finally made my way down to my grandparents house. I was supposed to go on the Sunday but I didn’t feel up to it. Papa’s health seems ok; he’s progressing at the expected speed of someone who has just had triple bypass surgery. He seems depressed though, but I read online and have been told that its related to having heart surgery and it will pass when he starts feeling like his normal self. I agree with that. Papa has always been the kind of man who has to keep busy, or else he feels useless. Plus there isn’t a lot for him to do around the house.

Papa isn’t feeling up enough to coming to my Commencement on the 28th of June, as the car ride is a long one and he would have to sit outside for a couple hours – he could catch a chill. I don’t want him getting sick over seeing a silly ceremony that is very predictable anyway. He’s seen Shannon’s and Kate’s, he knows how it works. Besides, we will take lots of pictures and he will get to miss all the boring speeches! Lucky guy!

I start work tomorrow, I mean actual work, getting paid for the hours I put in. I got all of my co-op hours on Friday and sent in all of the co-op papers, so I’m now officially done with co-op. I’m an official employee, getting paid. We leave on Friday at 5pm for camp, and won’t get back until 3:30pm on Sunday. For a while, I was just going to get volunteer hours, but luckily my boss decided to put me on the payroll for that. Camp is going to be very hectic and stressful, and it will be good getting paid to sleep on a very hard ground and probably throw my body out of whack. It’s going to be interesting to see how my body reacts to sleeping in a tent, as I’ve never done it before. I’ll have to do it for 3 weekends in a row in July!

Well I’m off to read and get an early sleep, and perhaps think of some alibis for the Murder Mystery Club Night I’m helping run tomorrow.

P.S. I am a little worried that I lost all the readers I had before when I wasn’t posting a lot, so please if you are reading comment me so I know you’re still reading!