Tuesday, June 2, 2009

I can't leave the house.

I can go outside when it's 26C (79F) and 64% humidity. I can't go outside when it's 28C (82F) and 51% humidity.

Two degrees is what separates me from having a life. There's nothing I can do, save for buying a cooling suit.

I don't know how to do this. I don't know how to just suck it up or live with it. I don't know how to just be grateful for what I can do when it feels like I can't do anything or my accomplishments are measured at the same level as a preschooler.

I wrote a lot more in this post, but I deleted 80% of it because it's just too personal. I don't trust all of you who don't have MS to not try and fix me with suggestions of what you would do since you can empathize with my state based on that one time you were sick for a really long time. I also don't trust all of you who have MS not give me a pep talk and tell me how a lesser version of the life you wanted is good enough for you because it means you're still alive and your life has some worth and meaning, no matter how stunted or compromised that life is.

Yes, that sounds as bitchy as it was meant to.


  1. Honey if you find a solution to this particular problem please please please tell me about it! The heat in Kentucky right now is totally kicking my ass and kicking the stupid MS into high gear :-(

    What I would LOVE is to be in Kentucky in the winter (I genuinely love my home state) from october - may and live somewhere NOT hot from may-october but that would require money which I don't have anywhere near enough of for that lifestyle :-(

    I spent yesterday driving around in a BLACK UNAIRCONDITIONED SUV! Can we say 6th or 7th circle of hell at least?!?

    Today I went and borrowed my (recently deceased) father's boat of a buick that guzzles gas WAY worse than any suv ever made, gets honked at constantly because it is an old person car but is blessedly air conditioned!

    The only thing I have ever found that combats the effects of the heat is to immediately come in where it is air conditioned and take a soak in a tepid tub for 20 minutes. Not particularly pleasant but it does stop the issues for me generally. And it can't be a cool shower, really has to be sumbersion in tepid freaking water...shudder!

    Just try to hang in there okay!

  2. I was once told to put an ice pack on the back of my head - a la brain stem location.

    thanks for commenting on my blog...it caused me to find yours... =)