Friday, October 28, 2005

You don't know what it's like

I ran across this on the net the other day and wanted to pass it on. It is an Open Letter To Those Without Invisible Disability Or Chronic Illness. There are also some variations of it available which target CFS/FM, MS [for you e] and more. The one on ID/IDA, CFS/FM and Chronic Pain pertain to me best and the one for people who love someone with fibro I will be emailing to a number of people after I finish this post.

The gist of this is that things which can't be easily measured or qualified by immediate sensory feedback tend to get ignored or greatly misunderstood. Example; If, $DEITY forbid, I were to have lost my legs, either the use of them or they were physically removed, I'd be stuck in a wheelchair and would be easily and obviously seen as disabled. But you know something? I'd be so much better off then than I am now. Really! It would suck and I'd hate it but I'd be able to work and sleep and go out and play with my son and have a social life. I'd be able to brush my teeth or do the dishes or wash the laundry or cook dinner. I'd only need some minor adjustments and off I'd be. But today; right now; I am unable to do just about everything on that list. Thankfully I can still take a shower, get dressed and go to the bathroom. But how long will that last?

Lately I've been trying to take a more active role in my treatment in that I'm working on cutting back in the meds and trying Acupuncture. It's still very early into this but they seem to be helping a bit. My hope is that they will help a lot. But understand, "a lot" means that the pain level is lowered noticeably. If I could cut my pain level in half I'd be potentially able to do the dishes and cook dinner. Now I know some people would have expected an answer like maybe I'd be able to work and live full-time again. Well, that would take a miracle. Because not only am I fighting the pain I'm fighting everything else. All the other things wrong with my body, and my mind, that have accumulated over the decades. My psudo-girlfriend (a relationship pretty much dead but that's for another time) talks about how I am the most intelligent person she has ever known and all I'd need to do is put a little effort into something, ANYTHING, and I'd be happy as a clam. While it's true that I lack ambition, it is actually that I lack great ambition. So even if I was healthy I'd never be Linus or ESR or Billy-boy but I would be someone who was making a good living at my profession. But that is not something I can do. I repeat, I can not do that. I can't make a decent living. I can't even work for minimum wage.

Which brings up the coup de gras of my situation. I am becoming more and more hampered by depression. Clinical depression. The kind that you just can't shake off or push through. Just do it is the most infuriating, though. That's like asking a person to "just push that mountain range over a few miles." It's idiotic and shows a complete lack of understanding. If there were any way I could change the chemicals in my brain to stop the depression and make it all better don't you think I'd have tried it by now?

That's enough for now. I have more I want to say on this, though. More to come, eh?

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