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Old 06-05-2011, 07:22 AM #1
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Join Date: Jan 2008
Location: Vermont
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Blessings2You Blessings2You is offline
Elder
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Join Date: Jan 2008
Location: Vermont
Posts: 6,726
15 yr Member
Default MS Village

Sometimes I think I'd like to live in an MS village or commune, at least for an extended vacation.

Yes, it's frustrating when "people" don't understand, but realistically, why would they? I expect my husband, my children, my closest friend to understand, but hey, I don't understand fibromyalgia or Parkinsons or all of the other various and sometimes rare illness that are around me.

But sometimes it would be nice to live where you didn't have to choose between "none of their business" and a ten-minute explanation. Where everybody just accepted as normal that:

If it's too hot, my brain, muscles and guts liquify; but if it's too cold, my muscles spasm; and there might only be a ten-degree gap. If I stand too long, I have to sit; if I sit too long, I have to stand; and "too long" can be ten minutes.

That sometimes I can't sleep and sometimes I can't stay awake. That sometimes I'm Pollyanna and sometimes I'm Scrooge. That sometimes I can drive and sometimes I can't; it doesn't mean I should give up my license. That sometimes I'm sharp as a tack, and sometimes I'm a slack-jawed blank stare. Both are transient.

That yes, you saw me outside pulling weeds on Tuesday, but on this day I don't have the energy to take a shower. That today I'm so lonely I'm ready to stop traffic, but tomorrow I might look at the caller ID and ignore you.

Sometimes I'd like to live only among people who understand that normal can change every fifteen days, and that often the change has no discernable cause or explanation. And that sometimes I want to talk and talk and talk about it, and sometimes I don't want to talk about it at all.

Of course, I know that it's a fantasy because (surprise) all the people in my utopian MS Village are all human also, and we're STILL not always going to get it. But it just seems as though it would be nice to conduct life where people nod their heads instead of looking at me funny, and I don't have to answer "what is MS?" Just for a little while. For a break.
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