Tuesday, March 23, 2010


I have been really, really trying to do things that will result in me getting a life for the past week or so. It's frustrating, because sometimes I am genuinely tired, but a lot of the time I've just convinced myself that I am tired so I can be lazy.

I am so lame.

I've been thinking a lot about what is holding me back from progress. I've come a long way in a year, I know this, but I'm still not *right*. It came to me today when I was trying to get myself off the floor. (I had sat down on the floor on purpose, I didn't fall.)

I am trapped in this body.

A body that doesn't work right or consistently.

A body that doesn't look at all what it looked like when I was well.

A body that I can't trust and I can't seem to change. Seems like every time I go to try to fix one thing that's wrong the fix causes something else to malfunction. It's bullshit.

Very truly, I feel like my body is my enemy; that it's the reason I'm so unhappy and swing from merely being annoyed and bitchy to massively hating my life and all situations in it from day to day. (Not generally hour to hour, unless something really full of bullshit happens during a given hour.)

Is it at all possible for anyone to come to terms with this without turning into a stark, raving Pollyanna-Let-The-Sun-Shine-In-and-Just-Think-Positively-No-Matter-What-Kind-Of-Bullshit-Is-Going-On-Because-It-Could-Be-Worse, The Secret reading nutjob?

I've spent sometime thinking about this. I don't think you can unless you can get to the point where you're okay with lying to yourself. Or your symptoms have been at bay for a while. That's just a false sense of security, because you know - You. Know. - that MS can kick the shit out of you one day without warning and you've got no recourse.

That said, I'm still putting in 40 hours a week. I'm generally not falling into bed with exhaustion before or after 11 PM. The HRT has fixed my hot flashes for the most part.

"Look on the bright side, it could be worse."

Do something that will make me feel better:

Join my MS Walk team! If you can't walk with me in Vancouver you can send me your money!

Or you can use your links on the right to pledge my team mates Margaret, Joe, Jeanine, Erin or me individually. Every dollar matters!

The UBC MS Clinic has submitted a CCSVI two-year research AND treatment study that will cost $3,000,000. We need to raise the money so we can find out exactly what the deal is with CCSVI and MS.

Thanks peeps!

1 comment:

  1. That is a good question. I can tell you that 9 years in I still struggle with "am I really having so much ms stuff I can't do X or am I using the ms as an excuse."

    I told someone yesterday that I think of the ms as a parasite in my body. It is something separate from me so no, I don't think you have to turn into a pollyanna to survive ms.

    You will find yourself telling newly diagnosed people the same stuff you hated for all of us to tell you a year ago though because there isn't anything TO say. Just like when someone you love dies everyone tells you it will get easier: lie! But they can't tell you the truth.

    My hope for you, well other than an effing cure!, is that you can settle into a routine where you largely don't even think about the ms day to day. The ms just is and you just are and sometimes the ms stops you from doing something you want to do just like other things might.