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The Invisible Beast

May 30, 2011

After todays upsets and a heat related flare up that sent my foot into horribly painful spasms, I had to take some time to cool off both figuratively and literally. I’ve set my media library to random and a particular line of an AFI song (the leaving song pt. II) that I never really noticed before caught me:

I saw its birth, I watched it grow
I felt it change me
I took the life, I ate it slow
Now it consumes me

There it is, 8 years of my life summed up in four lines. I can’t think of a better way to put it. Look at what I’ve turned into from all this; I’m beyond spiteful, full of anger, pessimistic, high strung, I have zero patience, and just generally miserable. I try to put on a happy face and I just end up being more and more consumed by all the negativity because I try too hard to supress it. I tried so far for years to avoid being tagged as “depressed” because I, in my negativity, assumed that depression would be labeled as the cause of all my problems when in actuality the depression is a side effect of this physical illness and all the frustrating situations its put me in. When I sought help for the depression, there was nothing that could be done, even pharmalogically, since the source of the physical suffering is still officially unknown and only suspected.

I think back to the way I used to be, and I wasn’t always like this. I was never overly outgoing but I was generally fairly friendly and gave people a chance. I would never think of having taking more than maybe an aspirin for a pain and almost never used any prescribed pain meds for injuries aside from a major one (a knee injury that nags me to this day). Health care providers were wonderful, caring people that just wanted to make you better. Sure some days would be harder than others but hey, those hard days always came to a close and things always got better. The sun would rise and shine again and all would be wonderful. And besides; someone always has it worse than you so when you’re feeling down, help out someone in need! That’ll turn that frown upside down!

Whatever this illness is, it has severely crippled that part of me. While I still whole heartedly believe in volunteerism, I can no longer do the volunteer work I used to because of the unpredictableness of my health. Health care providers are jaded, angry, monsters that want to find any tiny reason to brush you off until proven otherwise. Don’t bother getting to know someone you don’t know because they’re probably just a drama-loving, attention-seeking, jerkoff that is only out to use you. While I don’t touch OTC pain meds now because of the damage it’s caused to my stomach (let that be a lesson to you) aside from helping out with an every day ache and pain, I was taking beyond the maximum dosages of multiple types of pain meds almost daily. I was just desperate to make the crippling pain stop. But they didn’t do anything. And then the doctors didn’t do anything. So I would try the OTC pills again, and they still wouldn’t do anything, so then I’d get more stressed out and frustrated and that would just exaserbate the pain. I’d be lying if I said I never considered using marijuana for pain relief (though I am not going that route because the legal mess is not worth it). Yes others have it much MUCH worse than me, but how am I supposed to help someone else when I can’t even help myself? Sure the sun will rise tomorrow morning, but who cares? It’s too damn bright and too hot, and I just want to go back to bed. Who the hell am I? At what point did this turn from occasional environment caused depression to a full-on personality change?

Was it the nature of the illness itself, and all the difficulties in getting a diagnosis? Was it giving up on so many things that I used to love because I just couldn’t physically do it anymore? Was it too much exposure to burnt out, negative co-workers in the health care field? Was it just plain old growing up? It’s a combination of all this I think. The illness itself being the worst cause of it. I’ve always had the “if you complain and do nothing to fix the problem, you have no right to complain” mentality, so I guess that makes it just that much harder for me to accept my limitations as a patient and the limitations of various care providers. I can’t stand having my hands tied, I am not meant to play the part of the dainty, helpless damsel. Forget the flowers and puffy dresses, just hand me a bloody sword already so I can chop the dragon’s head off myself.

I have been told repeatedly while trying to discuss this with others that I am not helpless, that I am doing something to better the situation. The problem with that is…it’s a lie. Am I taking steps to improve my physical condition? Yes. Am I reading up on various subjects to better understand what is happened to my nervous system? Absolutely. Am I helping raise awareness for a few causes and maybe even making some random stranger out there feel better about their situation by providing some commiseration? Sure. But none of those things are my goal. My goal is a diagnosis and a solid, disease modifying treatment that can only be provided by someone with the letters MD after their name. I’ve seen multiple doctors, I’ve had the first in likely multiple tests done. I’ve pushed to get the results of those tests, and now there is nowhere left to push. That is all I can do. That is what is driving me so absolutely batty.

All I can do is wait, and to me, when waiting is the only option, that’s having no options at all.


From → Journal

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