Tuesday, January 24, 2012

My body is a cage.

Yesterday was a bad MS day for me.  I am considering using a cane when walking in public so that I can be certain of maintaining balance.  It might also help remind me that, um, I have balance issues.  The thing I don't like about carrying a cane is the actual carrying of it.  My arms are in pain when I have bad days and carrying something might prove to be very annoying.  And you know what else is annoying?  Non-working accessible door openers.

Earlier in the day yesterday I read of someone whose mother died of MS at aged 58.

The inner dialogue kinda took off from there.  Add an argument with my daughter and I've pushed myself into an early grave with blindness and the complete lack of mobility preceding it.

What exactly is 'living bravely' with a chronic disease supposed to look like?  Does this mean that when you have bad days, like the one yesterday, you shut up and put up?  You try and stuff those dark and twisty thoughts deeper into the closet of one's mind?  On days like yesterday I have a sort of temporary schizophrenia.  My 'higher' voice says things like: "Oh c'mon, you're not that bad, you are walking and can see...don't mind the bit of eye trouble you are having today and that balance thing comes and goes...and I know the arms are painful today but that also comes and goes."  My "lower" voice says things like:  "You are physically washed out, how could you be dreaming of starting a business that requires any sort of manual labour...you're an idiot.  Why can't you just focus on using your brain to earn a living?  Isn't that why you went to graduate school for a decade?  It's too bad you didn't finish that phd...you wouldn't be in such a panic now, would you?  It'd be nice to have the benefits of a tenured job now, wouldn't it?  I guess you are really meant to be one of the have nots in this world, you really are a loser."

And on it goes.  A good cry sometimes helps, and it did yesterday, a bit.  I actually turned to music for relief.  A friend of mine made a request for my ten favourite songs of all time.  So I got working on a youtube playlist which will greatly exceed ten songs but will provide a nice distraction from life's realities for awhile.


  1. Shyte that disease anyway. It takes the mind to such dark, dark places.
    Look up, there is light. You are light.

  2. Just a quick shout of from your control group. I hold out hope that we will see a cure for MS in our lifetime, and so should you! (Just saying...) Turn the music up LOUD if you must, and let yourself alternate a bit of light with the darkness. Earlier this week, I ventured into the new coffee shop in the corner to watch the staff work. It's a fantasy job for me, but needs to stay that way. My daughter pointed out that they were all "young". Wisdom comes with age. I'd give it back for nothing. My inner voice is trying to talk my out of riding my bike in winter until the pneumonia is all good. I'm much more disobedient than I used to be. Insulin unlocked me from my cage at 40, and I've no desire to travel back in time. It's been a Peter Gabriel week. Must be something in the air.

    1. Control group :) :) Well behaved women etc but I do hope the pneumonia is better by now!!!

  3. Damn, I really really hate autocorrect.

  4. Were we not promised rose gardens? Here's one for your next playlist.... I use it when I need reminding of how great it is to be single by choice. Paula Cole. Where have all the cowboys gone? I'll stop spamming now....

  5. check out #83 on my playlist :) http://www.youtube.com/playlist?list=PL9249B5AFD289B2E1


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