Wednesday, June 20, 2012

Can vs Should?

Mike is an 18 year female to male transman. He is currently studying psychology at The Evergreen State College between making quilts. He someday aspires to be a social worker, and in the mean time, he wants to fix the fact that not everyone is born with an inherent right to be themselves.

I am physically capable of climbing a flight of stairs. I can also run, jump, skip, play sports, and stand on my feet for hours on end. At the same time, I am disabled. Not because I cannot do any of these things, but because it hurts like hell to do these things. Especially when I am running on adrenaline, I can ignore the pain. When I stop, however, I get hit with waves of pain and am usually tired for hours afterwards. It is possible for me to handle all of these activities, but the cost is much greater, causing waves of pain and fatigue I can’t get rid of for hours afterwards. It is this reason why so many people love their mobility aids, because instead of needing them to move, they are something that cuts out pain and makes it possible to keep up with people while running errands.

It took me a while to realize that this too was part of the fibromyalgia, not just the consistent ache when I don’t get enough sleep. I just assumed that everyone hurt as much as I did trying to do basic normal activities and that I was lazy when I couldn’t get up the will power to get up or go out. My mom would want me to go to the grocery store or my father would want me to run up and down stairs in order to get something for him, and all I wanted to do was lay on the couch. Getting up would usually be a bit painful and the POTS would result in a head rush. More than anything, I was tired all of the time. It took more energy for me to do something than it did for any of the other people my age and I just thought I was out of shape and lazy.

It was for this same reason that I was so reluctant to start using power scooters or wheelchairs. I didn’t think I was actually disabled, and simply needed to take more precautions in order to treat my fibromyalgia. I assumed that it was my responsibility to manage my disability and that it was my fault when I felt bad. It is possible to help out my fibromyalgia. I’ve felt better when I get enough sleep, when I eat fruits and vegetables until I’m fairly certain I’m going to put down roots and am starting to go hungry because produce is expensive, and there are a whole bunch of other rules that different doctors give me that may or may not actually work.

These are a whole bunch of shoulds, recommendations that will help me like some sort of magic spell. Some of them actually do work, but it means that I cannot be a normal teenager. I sleep best when I go to bed at eleven, so I can wake up in time for classes. My friends and roommates have other ideas, and the option of being able to have fun or fit in for a little while is often worth more than not having an ache in the morning. It is also frustrating, because it is a long hill to climb. I have to be consistently good in order to see results and one night of fun will undo all of my work. It is boring and tedious, forcing me to be much more responsible than any of my peers. It seems sometimes that having fibromyalgia is having to do all of the things that people are supposed to do in order to be healthy or feeling like crap. It takes both a lot of energy, willpower, and money in order to be able to follow all of these steps. It is draining mentally to have to have this much discipline, especially when I am around my peers who stay up all night and go without sleep for days in a row and eat nothing but ramen and sugar.

In the end, with all of these cans and shoulds, it is easy to blame myself when things go wrong with my disability. I want to be able to keep up with my peers and get all of the stuff that I want to do and what I need to do done. It doesn’t work that way, unfortunately. I have to be much more careful than the average person my age and being more responsible means that I cannot do nearly as much as I want to do, to a much larger extent than the TAB. I can eat crap food, stay up all night, and get all of my homework done in addition to playing board games with a group of friends, but then I know I will feel awful the next morning. I can also go to conventions and stand up for three days straight, but I will be paying for weeks afterwards. It is easy to blame myself when I hurt, because there are always things I can do. There is only so much I can do without still enjoying my life, however, so I try to take it easy on myself as much as possible.