Nickie Coby (puppybraille) wrote,
Nickie Coby

Perpllexing ponderings

Having had RSD for about four years, I sometimes wonder what "normal sensation" is. So imagine my thought processes when any number of the following things happen: Julio gives me a kiss, running his tongue across my foot, or on my leg (yeah, my boy's a real dog). I end up shaving my legs (I'd almost rather use a lawn mower, then people wouldn't be surprised by my screams). I need to trim my nails (though this and the shaving happen less because of the disruption of the autonomic nervous system). I kick a wall, not realizing that it's there. Someone gives me wool socks for Christmas.

As you can see, a lot of things are painful now that you might not find quite so painful (though I conceed that kicking a wall is painful, it's much more painful with RSD). The thing is, I forget that these things aren't painful for the neurologically-privelaged. And I realize that it's harder to imagine what this must be like than I probably realize.

It's kind of like how, as a blind person, I forget to turn on the lights when sighted people are over. Friends and my room mate whom I also consider a friend, just know to turn on the light if it's too dark for them. This is easy for people to accept; you can easily notice the guide dog, and if you get close enough, you'll see my closed, small and mis-shapen eyes. But unless I know you, and really trust you, you probably won't see my foot and lower leg.

You won't see the purple skin, the scars from surgery, the change in temperature and the swelling (although those who are really familiar with walking patterns, visual or vocal indications of pain or just good at seeing swelling through a shoe will see something). Unless I know someone understands how painful a simple touch is, I won't allow them to see the temperature changes. So, except for the cane, my pain is invisible. You can't see it. And you can't easily imagine what it's like. And since this has become a fixture of my life, I sometimes forget that not everyone comprehends the words "Reflex Sympathetic Dystrophy" or "Complex Regional Pain Syndrome" and then not everyone knows that's what RSD or CRPS actually stand for. Though I frequently talk about how it influences my life in bits and pieces (usually this is a small, specific part of life with pain). So it's possible not everyone reading this knows the signs. There are links in the sidebar to resources on RSD, but I never specifically tell readers when I "rearrange the furniture" so to speak, so you might not be aware that they're there.

In short, I forget how many things I consider carefully that not everyone does. Do I have the pain tolerance to shave today? When I bathe, do I need to use a more expensive bath product which helps with the pain, or should I save the money and use something which does nothing for the pain? If I'm out of medication, and can't get more, do I use the ration I have left when I'm at an 8 on the pain scale, or do I wait, in case it gets worse? How do I communicate my needs to my professors? If I really don't want to eat, do I do it anyway? When people talk about how "medicines are bad" and they don't believe in medication, do I say something, or choose not to say something because I know I'm crabby? When going on a field trip with the what accommodations do I ask for? And how do I explain these questions I ask in a way which makes sense to others?

I bring up all of this because it's something I need to consider in raising awareness, and especially during next month. The words I say can either be helpful, or not. Language is of utmost importance. And it's even more vital to portray the variations of human experience. There are so many different experiences of RSD. Some have it very severe from the beginning, some start mild and get more severe from there, some go into remission never to think of RSD again, and some get better for a time then get worse. Obviously, I fall into the last category. For a while, I only had tendonitis, with the RSD lurking somewhere. Not everyone will find their RSD spreading as I do, and it's vital that we be aware of this. There is so much of this disorder which is a mystery, and that's really important to know.

So keeping in mind that I want to help others understand RSD, it would be really helpful for me if you'd post your questions about RSD. I'll try to answer your comment personally, but also during November, having specific questions would help me know what areas to blog about further. Like I think/hope I got across, I forget what it's like not to know a lot of this stuff, so please feel free to ask any question.
Tags: rsd sucks

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