Tuesday, June 12, 2012

A wheelie big decision

I've enjoyed an almost 2 year remission from MG. She's back. I'm in a progressive phase again. MG moved outward from my shoulders and is now in my facial muscles, mouth and throat. I'm having a tougher time eating. It's amazing how complex eating is. The number of muscles that need to work together in concert in order to swallow one bite of food is mind boggling. I'm having difficulty coordinating my swallowing muscles. It's hard because eating is a social experience. It is isolating to struggle with something most people consider so basic.

I know from experience it is only a matter of time before MG moves downward into my hip and thigh muscles. I have choices to make. The progression from cane, walker, to wheelchair can take as little as six weeks. I'm aware I can preserve my leg muscles by dividing my life into essential walking and non-essential walking. What types of walking matter to me most? What types matter least?

Walking around the house and being strong enough to stand while cooking matters. Walking in the grocery store doesn't matter. Being strong enough to go bird watching matters. Walking around the hardware store, doesn't. If I am not strong enough to do all the walking I have to do, I am going to make sure I can do the walking I want to do.

Wheelchairs allow me freedom that my legs don't let me have. Wheelchairs let me pay more attention to what someone is saying and less attention to making sure I don't fall. When I use my chair I am in less pain. When I use my chair I am usually in a much better mood. People are often surprised by this, but which would put you in a better mood, feeling like someone hit you in the thigh with a hammer, or not feeling that way?

I am aware that wheelchairs separate me from people. When I use my chair I become "other." I find this difficult to handle because I am ME sitting down in a chair with wheels on it. My wheelchair is a tool, not a symbol. Eye glasses are for eyes. Wheelchairs are for legs. No one looks at people who wear eyeglasses as if they are special and yet almost everyone has the same response to a wheelchair. It is this aspect of using a wheelchair I find the most difficult.

I enjoyed walking. I admit I enjoyed going everywhere incognito. It's a wheelie big decision to take my wheelchair out of storage and charge the batteries. I'm struggling with it. I'll make the right choice for me in the end. But for now, I'm struggling with it.

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I am not a doctor. I do not have a medical degree. Nothing on this site qualifies as medical advice. These are lessons I'm learning at the University of Catastrophe. What I find to be correct answers in my classes may not be the right answers for you.

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