MS walk

I am still feeling okay about my realization that I simply can't return to work. Although, the past couple of days have been been plagued by morning wobbles, and afternoon yawns.

I am getting geared up for the Supercities Walk for MS. Em's Slackers, our team of walkers, has grown to consist of 16 people! Jason and I never imagined a turn-out like that. Myself, I will walk the 4 km route. That will be four kilometers more than last year!

I am even more geared up to get the team hats and t-shirts that I have selected for Em's Slackers! In an effort to put a bit of "Em" into the gear, there are three colours of shirts, with bright green printing on them. The common motif to the shirt fronts, backs and hats is a star. And what colours are the shirts, you ask...navy, classic pink, and chocolate! I am pumped! The hats are all navy - with a bright green star.

Jason and I would like to have our team back here later the same day for a BBQ. hmmm...I might have to colour code the dessert!

Emily

my comment

I am writing this post because of the comment that I just moderated...the comment made by Ladyfingers...my mom. Her comment made me cry. I'm crying the kind of tears that happen when you feel the support of someone you love. The tears that are telling me, "See Em, it's ok". The tears that say, "Boy, has your mom ever suffered through this too".

For the past 15 months, absolutely no one has pressured me to do anything. No one has made suggestions, or hinted to me at all, as to what they think I should be doing. No wait, that clinic nurse has...but she doesn't count. Sometimes, I have wanted someone to just tell me what to do, once and for all. I have wanted a medical expert to set it all out for me.

So after coming to the realization that my life has changed, and feeling definite about it, I became scared by what I perceived would be the reaction to my decision. Comments like, "But you didn't try", and "What are you going to do with yourself. You can't just sit around and watch tv all day", have disturbed me. So when I see that in fact I'm supported, I find myself a bit overwhelmed...but I have no reason to be. It's all just me, torturing myself...and I have been doing it all along. The support has always been right under my nose.

I recognize that this is the decision that I have to make now. But who's to say what will happen a year from now, or five years from now. Wait a minute, it hasn't really been a decision. It is more the acceptance of my new situation. If it is at all a decision, the decision is to stop trying to figure out a way to go to work. READ THE WRITING ON THE WALL. It isn't bad. Isn't acceptance one of the stages of grief?

Emily

realization

I think that I finally get it. While others may have "gotten" it a long time ago, I now get it. Instead of napping, I found myself laying in bed, composing this blog entry. I kicked off my nap with the thought, "What would Dr. Schmidt say?" The question being, "Did you know that I wouldn't be able to work again".

This question has plagued me for months. I have bounced around from walking straight back into the job I left behind, to starting a new job., and everything in between. I have tried to convince myself that I am now better able to handle stress than I was before, and that I would no longer take on any job with my full being. I have considered working part time, and tried to re-work the job that I left behind to better suit my abilities.

But I continue to find myself empty handed. After more thought, my latest and greatest scheme deflates right before my eyes. And now I realize that the reason for that is because "nothing" is the most realistic. As I have said from the beginning of this, I wish that I had a more visible disability. Instead, I get fatigued, I have trouble breathing, and I have trouble swallowing food. I have trouble making decisions, and making plans. And all of this gets worse when I am tired or stressed.

On Friday (or was it Thursday?) the wobbles peeked out from under the glowing haze of steadiness that I have been enjoying for weeks. This has totally pissed me off, but has also made me realize that "wobbles" are just going to be a part of my life. Take every minute as it comes.

So I am going to try to accept that I will not return to the work force. This has been a difficult thing for me to do so far, because I got sick just when things were taking off for me. I was in a place where my name was known to suppliers, my eye was something for my employer to trust and invest in, and word of my talent for creating individual and stylish spaces was spreading.

I'm not going to say that I feel "robbed". I've just been directed down a different path. I am no longer able to steadily earn a livable wage, but I am still talented. My plan (and hope) is that I can continue to nurture my talents and passions, and then share them in an unofficial arena.

I have always known that this disease would not get the best of me. Unfortunately, I have assumed that I would have to make money despite the disease. But that isn't what this is about. I have to respect the disease: acknowledge that it's there, as well as the limits that it has given me. I also have to respect not only the advice that I have been given on how to best keep the disease symptoms at a dull roar, but I have to respect my body, including my abilities. Abilities are not abilities just because they bring home loonies.

And what do I imagine that Dr Schmidt would say? He would say, "Emily, given the scope of the attack on your brain, we are surprised that you don't have more problems. What you are able to do is beyond our expectations, and no, I don't expect you to be able to work."

I hope that I don't deflate this one!

Emily