Wednesday, March 18, 2009

"I haven't been afraid of dying since I was 16...

With MS, for me it's the living part that puts me on my knees."

Woman's post on the internet

(From a cool forum site that did not originate the spam.)

What if I'm simply not interested in having a new "normal" life?

A life that doesn't include anything that I like, love, am interested in, or am good at doesn't seem like a life worth living.

I can't read a book for more than 15 minutes. I can't walk if my temperature reaches 99 degrees, so I can't exercise. I can't do my job because I can't work more than forty-five minutes without a rest. I can't remember what happened to me last week. I talk about BC when I'm telling a story about something that happened in New Brunswick.

My hair and skin are a mess. I can't wear any of my old clothes or shoes. I can't watch a movie on a large screen because it causes double vision. I can't stand in one place long enough to enjoy an art exhibit. I can't have more than one glass of wine in an 8 hour period. My husband and I might as well be roommates who give each other hugs, pecks on the mouth and pep talks.

MS has stolen EVERYTHING that I love and is important to me. It's stolen every dream and aspiration I had for the future. This is my new reality. I don't think, act or look anything like I did 6 months ago. I don't know the person I see in the mirror, and I want her gone.

I used to be fabulous. Now I'm not. What do I have to do to get the old me back?

Based on most accounts, there's nothing I can do. This is it. This is "me, with MS". I don't want to settle into a disability pension and a "fulfilling" volunteer job. I don't want to have kids and build a family. I can't and won't find meaning in serving the lord.

Everyday I look at job postings to see what's out there these days, and I realize that even if I improve I won't be able to do anything that I am actually qualified for and experienced with.

Where and with what does that leave me?

I fear a disability pension and a "fulfilling" volunteer job.

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