When the MS hit in January of 2013, it took everything from me: my mobility, my independence, my freedom. I was a prisoner inside of my own body. I fought to get better, to regain control over my body.
It took me longer to find myself again; but the thing was, when I found myself, he wasn’t someone I recognized completely. It was still me, but this person was different. He found joy in doing the smallest things on his own: taking out the garbage, cleaning out the cat litter, doing the dishes, being able to do laundry; everything was a small victory.
He was also more thankful, for everything. For his friends, his family, the people who loved him and touched his life. As I began to know myself again, I realized how different I was. My perspective had changed completely. I am a different person than I was and so much the better for it.
However, I’ve been struggling. The symptoms of my MS come and go on a moment to moment, hour to hour, day to day basis. There’s the brain fog, numbness, mobility, spasms, tremors, speech problems and my memory is shot; but I’m very good at ignoring my own body and what it’s trying to tell me.
I live with fatigue on a daily basis and I ignore this one most of all. I fill up my time with friends, with classes, with writing. I’m almost writing. I watch television rarely now and movies even less. I used to read three to five books a week. Now I can’t even manage one.
I was lucky. When I was diagnosed, I was told I had the CIS version of MS. CIS stands for Clinically Isolated Syndrome. They got me on my medication before I had a relapse. Even though I have relapse and remitting MS, I am lucky. I’ve only had the one episode.
It’s the fear of having a relapse that drives me to exhaustion. It always lives in the back of my head that tomorrow could be the day that I have a relapse and I have to fill up every moment, every second, before MS takes everything away again.
January of 2013 was the lowest point in my life and I am so afraid of having that happen again-but by driving myself to exhaustion, it’s far more likely that I’ll have a relapse. I’d be doing it to myself.
Last week, I was busy every night of the week. I had no energy left during the weekend.
I was done, finished and the week hadn’t even started yet. I could feel the fatigue, almost taste it and I had something going on every night this week. So even though I didn’t want to do it, I rescheduled a lot of it.
The problem with that for me is twofold: I don’t like letting people down and I want to go out there and live, do something. I’ve come to realize, however, that even reading a book and having a cup of tea is living. Watching television, playing a computer game or taking time for me is living. I had gone from finding joy in the smallest and simplest of actions to believing that if I wasn’t writing or doing something I considered worthwhile, I wasn’t really living.
I just took a look back through the past few posts on this blog and quite a few of them have been about needing to find balance, taking joy in the small things, remembering to relax and indulge. I haven’t been listening to myself.
So enough. I’ve finally pissed myself off. I’m going to enjoy life and that includes taking time for myself and listening to my body when it’s trying to tell me something instead of ignoring it.
I’m going to live. I am truly going to enjoy every moment and I’m letting the fear go. I’ve had it for far too long and it wasn’t a good colour on me anyway.