Saturday, March 14, 2009


I try really hard not to judge days, feelings, emotions, activities and practices as "good" or "bad".

Today is a day where I am really struggling with that. All the gains I've made in the past two weeks have been erased over the past two days. I'm using my cane again. I'm both sleepless and fatigued. Cognitive difficulties mean that this is going to be a short post.

It's probably just because I'm now in the crashing immune system phase of the mito treatments.

I had my first emotional outburst yesterday in quite some time which was almost immediately followed by my left knee giving out and my vision blurring.

I was running on five hours sleep, and by hour ten of my day other abilities started collapsing. Yet I couldn't fall asleep because the dreams of falling on the pavement and smashing my teeth are back.

Today, all the stuff I lost yesterday hasn't come back. It's not any worse I don't think, but it's not here. I want to do a load of laundry, but I know I can't do it by myself and Joe's up to his eyeballs in school work. To ask him to help around the house seems selfish, because it's not like what he's got to do is a 40 hour a week job. He's writing papers, reading, programming and web developing. I'm staring at the internet almost every waking hour of the day because I so desperately don't want to be alone.

I'm an extrovert who doesn't like or trust many people. I don't have many friends and the friends that I do have either don't live in Vancouver or have their own personal soap operas to deal with. If it were not for Facebook, the only person I would talk to each day is Joe. Maybe Simon a couple times a week. But yeah, this is it.

This is my life.

I only realized a day or two ago that someone I know saw me like this. I am horrified that those friends saw me, my house and my life in such shambles. If I had been in my right mind I wouldn't have had them here.

I was thinking that this weekend would signal the start of me reclaiming my life but it's obvious that's not going to happen because I can't walk. I'll be lucky if I make it to this evening having been able to make it in and out of a shower. I have clean sheets that will just have to wait until I get better to be put on the bed.

It feels like I've stacked 80% of my old life on a chair; for use after something called "better" happens.

Maybe I can donate that old, unused life to the Sally Ann. I'm sure they can find someone who could benefit from it.

1 comment:

  1. Lori, I can't imagine functioning on only 5-hours sleep. I can imagine trying but not succeeding. Combine that with the cycle you've discovered from the infusions and it's less of a surprise that you do not feel well.

    The feelings you are expressing are very common for folks who live with an unpredictable disease. I don't know if you've discovered Nadja's blog yet, but I think that you would enjoy it and relate.

    Living! with MS - Nadja has had MS for just about one year. She shares her thoughts, experiences, struggles, and wins on her blog.

    As a former perfectionist, learning how to allow things to be "good enough" was very difficult. Letting people see me (and my home) in shambles was devastating. But friends really only care about you, not the condition of your home.

    I hope that you begin to feel stronger again soon. Hugs.