It's Beginning to Look A Lot Like Fun*Run Time

It's ALREADY that time of year again: The ADAPT Fun*Run for Disability Rights is April 22nd 2012. Maryland's fundraising goal is $8,000 this year. Yes, that's right, $8,000

Donate $1! Donate $10! Donate $100! Donate $1,000! JUST DONATE so we can FREE OUR PEOPLE! I thank you very much for your support!

Thursday, August 28, 2008

I Never Realized How Tired I Really Am

Anyone who says their CP isn't causing fatigue issues is lying to themselves. Your body is only designed to be used one way, and when you use it differently 24/7 it takes its toll. I can first remember being tired in the 4th grade. It started in the beginning of the year. When most kids get to school in the morning they do anything they can to avoid going into class, so they hang around outside until the last bell rings and then make a mad dash through the door. Not me. I do anything I can to avoid having to stand, so everywhere I go I make a mad dash to the nearest chair. There weren't any benches outside so I was always the first kid into class in the morning. Every morning before any other kids were in there I would come in and hang up my bag and Miss B. would say "Good morning Cheryl, how are you?"


That went on for several months until she finally gave up. It was the same answer everyday. But at 10 you don't give much thought to these things.

In 5th grade my fatigue got worse very suddenly. After I was tested for mono, lyme disease and anything under the sun that could possibly make me tired, and all tests came up negative, my therapist decided it was an extreme stress reaction (I had the teacher from hell that year, another post for another day). It was late May by then I believe. He told my parents to pull me out of school for the rest of the year and almost instantly I wasn't as tired. Tiredness with an explanation.

I went to camp in the middle of the catoctin mountains for 6 summers. Not a very crip friendly environment, spending 4 weeks in the middle of the woods. Even with counsleors driving me around half the day in a golf cart, I never was able to get enough sleep to offset how much energy it still took to get around that place. Either lights out was too late or breakfast was too early. Take your pick. Every summer about half way through camp I would break down hysterically crying-- usually sprawled out on the gym floor as I didn't even have the energy to sit up. Even when I was 16. I would spend a day in the nurses' office, not able to sleep because of the noise in there, but at least laying down for the entire day and not having to move at all. That seemed to do the trick and get me through the rest of it. But that was camp in the woods, not something you can generalize to the rest of my life.

Then came middle school, 6th grade, where I was getting up at 6:30. That really took its toll on me. Like any good 90's tween I was addicted to TGIF, but by the time that ended at 10pm Fri night I was so tired from having to get up so early and make it through school that I would either fall asleep on the couch or my dad would decide to carry me up to bed. I was so tired it wasn't safe to let me walk up there alone. But I was getting up early...

In high school I had to get up at 5:45. I was at school at 7:05, 1st period started at 7:25. One day in 11th grade I wore a pedometer to school and I walked 3/4 of a mi just getting from class to class. No wonder I was so tired. But at least in 8th grade I had major surgery so I no longer passed out cold on the couch on Fri. It got me functional enough to stumble up to bed unassisted.

College was supposed to be easier on me. I knew it wasn't going to solve my fatigue issues entirely, but I would no longer be getting up before the light of day. Except that I got really depressed in college so that didn't matter. Again, exhaustion with an explanition. Last fall I got really manic. I didn't need to sleep as much, but I was more tired, not less. If you have chronic fatigue issues, being manic is just awful. I wish it were as great as other people w/BP say it is (the whole euophoric thing). Instead my mind was moving at warp speed, but the speed of my body stayed where it had been. CP and BP just don't go together. I couldn't keep up with it. I went around feeling like walking dead. Mania was keeping my body from obtaining the extra sleep it needed to accomodate the mania (that more then sucked). The exhaustion sent me crashing into a depression after my body finally gave out. When I finally got a diagnosis of BP II it again became exhaustion with an explaination.

Now all of that stuff is sorted out. I no longer get up at ungodly hours. I am not depressed or manic. I have had all the surgery in the world (and then some). But I'm still tired everyday. I have spastic triplegic CP and I've made it to 23 on my feet more often then not. This is the price I have to pay.

The real problem now is that I have to function in a society that prides itself on effiency. But I'm the epitomy of ineffiency. The last time I had a gait analysis done I found out it takes me 3.5X more energy to walk then someone else of my same body mass. And that test was done inside on even, flat, linolium floor. My campus is all hills with a bunch of brick. No wonder I'm tired at school, but I've been home for 3 weeks and I'm still tired. I'm that energy inneficient. I'm also inefficient in that because of visual processing issues I absolutely cannot multitask. So I can't accomodate the fact that my fine motor skills are slow and inefficient as well by saving myself some time. I just cannot keep up with the rest of the world. It has gotten to the point of causing signifigant anxiety issues for me in that people expect me to, and I've been in this fantasy world where I did too.

Why? I knew I was tired, but I was tired with an explanition. If I got rid of the problem I'd be less tired and then I could do it (whatever it was). Well, I sure hope I got rid of all the problems, but that didn't relieve my fatigue as much as it was supposed to (in my head). Now that those problems are gone I unfortunately have to function within my reality of still being tired. Reality sucks. Reality is making me incredibly anxious and bitter and angry. I get nervous when I'm not tired. It's a sure sign something is wrong. But could I be just a little less tired?

The thought of having to do all of what I have to do in a day is making me anxious and at times even nauseous. Mostly all I have to do is focus on trying to get out of bed in the morning and it will set me off. That is the hardest part of my day. It always has been. In order to have the time to do all that I have to do in a day I can't get to bed as early as I need to so that I have enough energy to do it all. I've gone over and over my color coded spreadsheet of this semester's schedule. I cut all I can cut. I could cut the gym? No. CP issues mandate that gym is non-negotiable. And it helps with the anxiety. I could cut out lunch breaks with friends and eat during class? Tried that before and it was an utter disaster. Without the break I get more tired and more anxious. So I cut sleep down to 8.5hrs.

Sounds reasonable, right? I need 10hrs to keep up with the rest of the spreadsheet. I don't know how AB students do it all. I don't work and I'm down to part-time to try and make things easier, and I keep freaking out about, of all things, just having the umph to get out of bed without pressing snooze for 2hrs. I could go on, and I could go on, about the impact my fatigue has on me and school, but this post is already crazy long.

I'm TIRED and I'm TIRED OF BEING TIRED and I'm at a loss as to what to do. I've said that we have to embrace our disabilities, that we have to learn how to work with them. Ok, that's great. I think I've got that part right. Except that I haven't gotten far enough to know how to work with/around this part of mine because I kept waiting for it to get better. Now that it's clearly not going to, what's my next step?


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