Staying Positive

Well, today marks eleven years of knowing that I have MS.

Eleven years of officially knowing that I have an incurable, life-altering disease. Life-altering for me, yes, but also for those around me. Those who love me. After eleven years, there are times I feel less like a survivor and more like an existor.

As disease progression goes, I do consider myself lucky. I'm still walking. I don't have a catheter. I can still eat. Could those things change in my future? Sure they could. I always lay still for a second or two before I get up to make sure my toes wiggle. So far, they've wiggled when I want them to. Will that change one day? I don't know.

I remember the person who was me before I found out I had MS. Oh, sure, I'm still me, and in many ways, I haven't diminished at all. In my head I'm still an ambitious, creative, vibrant person who can conquer the world. My body usually puts the kibosh on those plans, and thus is my daily struggle. The struggle between being the me who I think I am, and the me who I want to be versus the me who lives in this body.

I think back and recall weird little things...I remember when I was around 19 or 20, and I had my first job in jewelry manufacturing. I was experiencing some peculiar symptoms that I thought were like rheumatoid arthritis, so I saw a rheumatologist. After some testing, he determined that I didn't have RA. He didn't know what it was, but it wasn't RA. 

Around the same time, I was seeing a neurologist for migraines, and one day I called her because I was having weird vision problems. It was as though I was getting a migraine, right before you see the saw-tooth aura and everything goes grayish. She told me that you can get a migraine without the headache. For years I just assumed I was having a non-headache migraine when in fact, it was more likely optic neuritis. What did I know?

I wrote about the whole long time in Chicago where they never even looked for MS in this post, if you haven't read of my saga.

Would I be any different now if they had diagnosed me in the 90's? I don't know. Does it matter? No, not really. I had a conversation with a friend yesterday, and I'm still curious to know why I have MS. As I mentioned in this post, I don't want to know from a “why me, poor me” standpoint, but from a science standpoint. What triggered the disease? Was there an underlying factor, is it caused by a virus? Did a gene mutate?

I try not to dwell on things I can't change, or things that might have been, because what's the point? I choose to spend my energy to live in the now. And that takes plenty enough energy. I try to stay positive, and focus on the good stuff.

And when you look hard enough, there's a lot of good stuff.

I'd like to say that MS has helped me become more tolerant, less of a perfectionist, and that MS has helped me be less critical of myself. I'd like to say those things, but I'd be lying. The truth is that sometimes I feel guilt and anxiety because of what I'm unable to do. I'm still waiting for the magic bullet that will let me be the mom my kids think they have.