Friday, July 17, 2009

More discoveries.

So I've figured out that it's not the heat that kills me. It's heat concentrated on my head, neck and back. If I stay in the shade or otherwise keep the sun off me for extended periods of time I don't lose any function whatsoever.

I also did some mitigation before leaving the house. I soaked my head in cold water and as I was doing my hair and makeup I had one of those beanbag kinda cold packs around my neck, and then I went outside with a white shirt on, a white hat and a pink umbrella to create shade wherever I was. I kept to the shady side of the street whenever possible and if I was just going to be out in the sun for more than a few minutes I used the umbrella.

It all worked, and I made it downtown and home on quite a hot day without anything going anymore wonky than it was when I got up this morning.

I really need a stationary bike. I can tell I'm completely out of shape and weak from inactivity more so than from the MS. I just need to figure out how to pay for it.

The MS Society only has funding to provide mobility aids not "prevention" or "rehabilitation" equipment which sucks. I can claim the damn thing on my income taxes but that doesn't happen until next year. I just don't want to be sick anymore and I think that trying to get something that's *me* back is important for me to get there.

I kind of had a run in with the social worker from the MS clinic. She thinks that I will be miserable for the rest of my life if I can't accept that I will always have MS symptoms. I said to her that I won't be happy until I don't have MS anymore. She said that that is unrealistic and I need to find some way of accepting that I may never have feeling in my finger tips again. I may always have a funny walk. I will never be able to wear heels again.

I know this, but I don't want to accept it. I don't want to be happy in spite of it. I don't want this lame excuse for a life to simply be "good enough" for someone as damaged as me. I don't want going out for lunch to be a major accomplishment like I'm four and was able to dress myself for the first time. This life isn't what I want but I am willing to try to work around and accommodate what I need to to get by... but don't you for one second try to tell me that I've got to be happy to be alive through it.

I love my husband, family and friends more than anything and right now it is their wishes that keep me alive.

I was in a state of disorder and reconsideration before I got sick and now this just makes trying to make something of my life just that much more pointless. Joe doesn't think I'll ever work again. I think I can but the job I want and can do doesn't seem to exist. I don't know what my friends and family think of my future, but they can't think much less of it than I do.

Joe is enrolled for his fifth semester of post-secondary education. He's declared his major and was given a pen from the Political Science department of Simon Fraser University to mark the occasion. I'm so happy for him because he's moving ahead. I'm so proud of him because he's really made the most of his immigrant experience by taking advantage of the opportunities he has here to get skills and knowledge he didn't have the money to get in the US. I guess its a good thing that we're less litigious here in Canada or things might be different.

I've been told not to bother setting any goals for my own future until I'm more stable. Since I was pretty unstable before I got sick, I'm not sure I have that kind of time to wait. I have to find a job, because the EI information I'm getting is so incredibly confusing. I am so tired of having nothing to do, no where to go, and no reason to get up in the morning but checking my crops at FarmTown on Facebook.

I just want something to do. I don't know what, but I just want something to do. And I hope that they don't put me through one of those "career discovery" programs again because I'm not really interested in becoming more suicidal than I already am. I don't need a reminder that I never lived up to my potential and have no education or skills that allow me to do anything I am remotely interested in doing. Not that I'm interested in much, according to my career assessment.


And now I'm told that Walter Cronkite is dead. That's sad.

Mum, if you are reading this... I'm sorry.

1 comment:

  1. I've always felt that noting, and I mean nothing, can stop you. I still believe that. Maybe that's not the "right" thing to say, but I believe in you babe. *hugs*