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!

Saturday, January 5, 2008


I have written previously about my recent sleep problems. They haven't gotten any better and I've decided that I just do not want to be doing what I've been doing--sleeping pills. I agreed to try sleeping pills because I have a 9am class next semester and right now I will do anything that makes me be able to get to it. This is the second time I am taking this class and there is not going to be a third time. There just isn't. So if taking sleeping pills means that I will be able to get up at 7am then I'll take sleeping pills. But I haven't been completely comfortable with the idea of taking sleeping pills. Why? CP is almost synonymous with fatigue. It flat out takes me more energy to do anything, which means that I am almost never not tired. I am already on one medication that has the side effect of keeping me more awake; it isn't sitting well with me to then take one to put me to sleep. I feel like I'm being controlled by my medications. They dictate when I am going to be awake and when I am going to be asleep instead of me dictating when I am going to be awake and when I am going to be asleep. I need to have control over what I do and do not do, not some inanimate man made object. Besides, they're not solving the problem anyway. The last 2 days I've had my alarm set at 7am to practice and both days I slept right through it. I'm completely dead to the world. That isn't seeming to fit with a 9am class. I tried taking half the dose, which worked for a few days, but then that wasn't enough, and one is obviously too much. So now what do I do?

I have 2 choices. One is to take nothing and be up the entire night. I have a feeling I'll get tired around 6am. The other is to take some valium. I have valium for when my back acts up, and it knocks me out but not enough that I will not hear my alarm. I'm not going to say that I have never used valium as a sleeping pill before. I'm only human after all. The way I figure it, 30 pills lasts me about 14 months, so if once in a blue moon I take one to put me to sleep, who's going to know? That was a fine idea until I came to the absolute decision that yes, medication is absolutely ruling my life, but that no, I didn't have to let it. So while valium is certainly a better option than seriquil, I have decided that I am going to stay up all night. I have decided that I am going to go to bed every night (or morning) at whatever time I finally feel tired, but that my alarm is going to stay set at 7am and I am going to use everything I've got to drag my butt out of bed and directly to the gym. After a few days of very little sleep I've got to be able to go to bed at a reasonable hour.

I've been doing a lot of free thinking since I've started this blog, trying to keep my brain open to whatever the next thought is that happens to wander in. I was thinking about the idea of having medications control my life and I came upon something I think is very profound. I decided that medications are an aide in the same way that my orthotics are. They are an aide that I use to allow myself to be able to reach my greatest potential. If I didn't have orthotics my feet would hurt all the time and I wouldn't be able to go places and do things because I would be so uncomfortable. So you see I'm not opposed to medications in their entirety, just the ones that do not enhance my life. Sleeping pills do not, so they are out.

What about the medications that I do find beneficial? I seem to go in phases with those. Sometimes I take them and sometimes I don't, kind of on a whim. If they are an aide that is supposed to enhance my quality of life, wouldn't I always take them? I never leave my house without my orthotics in my shoes. I would never dream of it. I wear sneakers with formal wear because that's what they fit in. I don't like doing that, but I have to. It's just simply a fact of my life. Why then have I not made medication a "fact of my life?" Logically speaking I should be more likely to take pills then to wear orthotics. I flat out asked for the pills. I never asked for braces--I got my first pair when I was a baby. My orthotics make my feet sweaty all the time. I haven't had any negative side effects from the medications I'm on now. The whole thing just flat out doesn't make any sense.

I like to say that I don't need things. I don't need left handed desks, I said in 9th grade (even though I was having painful spasticity related issues in my left arm). I got broken down and my parents made my school order left handed desks. My arm hurt less. I don’t need to bring my old crutches up to school. I didn’t have 7 surgeries to have to use crutches I said. Well of course there were plenty of times last semester where the construction made the on campus paratransit take too long and I just didn’t have the time to wait for it. I needed my crutches. I am most likely going to need to use a wheelchair when I get my first job in a hospital. I don’t have the stamina to spend 30ish hours a week on my feet. I prefer to ignore this fact. Why is it always so wrong to use these things but not wrong at all to have orthotics in my shoes? Nobody gives a crap if I take medication. All of my closest friends take medication for something. It doesn’t make me different. On the contrary it makes me fit in more.

How do orthotics enhance my life in an acceptable way, but these things enhance my life in an unacceptable way? Why do I push so hard against having to use something, anything (except orthotics of course)? I wasn’t always so willing to wear orthotics. How did I get won over? Orthotics make me feel good. Left-handed desks and crutches and wheelchairs do not make me feel good. They have good points and bad points. They can decrease discomfort and make me more self-sufficient and independent, but they can also cause discomfort and make me more dependent. I can’t carry anything when I’m using crutches, for example, and that bugs the crap out of me. I’m a glass half empty kind of gal. I tend to fixate on what I don’t like about using something. I can’t think of any bad things about wearing orthotics. I don’t notice the sweat anymore and even if I didn’t wear them, I would still have trouble buying dress shoes. I have wide feet. Pills make me feel good too, that’s what I’m on them for after all. I turn assignments in on time when I take my pills. For a while I thought maybe I didn’t like feeling good. I’ve spent so many years feeling bad—I’m really used to feeling bad. No, I do like feeling good. I turn assignments in on time when I feel good. But you know what? Looking at the last time I felt good, I was pretty glass half full. I would still hate using crutches but I would tell myself why using crutches was OK.

Feeling good takes too much energy. Energy that I don’t have because I have CP. Turning assignments in on time means that I have to do assignments. Being ok with using crutches means that I am going to use crutches, which means that I am going to walk far often. I can’t do feeling good very long. Feeling good is too exhausting. Not doing assignments and not walking far is very obviously not exhausting. Not exhausting is just so much easier to do then exhausting. Yes I’m still tired when I don’t feel good, but tired is not absolutely utterly exhausted. So I don’t take my pills because taking them is just too much for me. Yes, that makes sense. But if (other then being exhausted) I like feeling good better then feeling bad, what am I supposed to do?


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