Friday, July 31, 2009

Getting closer.

I have been warned by 5 people with MS, the relapse nurse & the clinic social worker that I am setting myself up for a huge fall.

The heatwave broke today. While it's still quite warm and sunny, it is a good temp in that I can still keep moving. I'm feeling a little more confident in being able to get out and do things that I used to do.

One of those things is going to the Pride parade. I marched last year with the group from Vision Vancouver in advance of the municipal elections but this year I just can't trust that I would be able to make it through the very long route on foot.

My friend Cristin is the coordinator of a float and I will be on it. With my new tiara, pink umbrella and fabulous hair, I will wave to the estimated half a million people who are going to line the streets of Vancouver's West End. I don't know if she's got stuff to throw, but I will throw it if she does.

This brings me to the set up for let down.

I'm trying to get my life back by pretty much ignoring the stupidest of my symptoms (listening only to nerve fatigue symptoms, really) and getting on with it as if I'm not sick.

I've been told that this is just holding back the grieving process. If I get content in my old life I will have to start all over when I crash.

Since no one can tell me when I will crash I'm just going to do what I know. And what I know is that I am the kind of person who rides floats in the Pride parade wearing a tiara, waving and throwing whatever (Plz let it be condoms) and shouting "Happy Pride" to everyone. I even made a special playlist of songs on my iPod to celebrate the occasion. I am aware that I have nerve fatigue issues with my left leg so I'm not trying to walk the route. I am aware that too much heat is not good for me, but the weather is supposed to be cooler over the weekend and that's why I have an umbrella and light coloured, comfortable clothing. It isn't as though I'm acting like I don't have any issues.

I gots my hair did for the weekend because I am the kind of person who gets their hair did regularly. Gone are the creeping greys that have been driving me bonkers since I started realizing I looked like shit. Having only one haircut since November before today was not my norm.

These are things that I like, even love, to do. While many of my friends don't really get it (especially here in Vancouver) I feel better about myself, the direction of my life and my prospects if I've just got it a little together on the outside.

Mayhaps that's the Cognitive Behaviour Therapy that I've spent a fortune on over the years talking, but it is real and true for me.

On a bad day there's always lipstick.


  1. I think you're doing everything you need to do to enjoy life as you know it. Everything else will get sorted as it comes.

    I can't imagine I'd handle the circumstances any differently.

    Happy Pride!

  2. Lori--

    I think it sounds like a ton of fun! I think having this disease just makes us have to look at how to do the things we love to do, not giving them up!! And it sounds like you are doing exactly that. Have a great time


  3. if you can take pictures.. I would love to see your hair.......... have a great day