Wednesday, August 11, 2010


That's my new mantra. I've realized that I've been too nice when it comes to MS. I haven't complained, and I haven't taken charge. MS doesn't play by the rules. It doesn't take turns, it cuts in line, and it will eat the last chocolate chip cookie on the plate.

In the early days of MS treatment, patients were expected to rest, to play the waiting game while MS stole what little vitality they had left. Now the advice is different - exercise and stay active if you want to still be active.

Somewhere along the line, I forgot how to fight. I forgot how to get angry enough to act. MS exploited that opportunity perfectly. While I was making nice, MS was helping me become an out of shape victim who falls regularly without a cane.

So I'm letting myself get angry. I'm encouraging myself to fight back. When I want to swear at this disease, I'll swear at this disease. And my new mantra can be summed up in 4 letters - FUMS. Sometimes, I'll even yell out what the F stands for.

Today is step one in the plan to take back my life. I've got an appointment with a physical therapist. My goal is to put together an exercise program that will help me get back in shape. I have MS, but if I'm taking an active role in getting myself in the best shape I can be, then I'll be better equipped to fight it.

You may have won the first set of this match, stupid disease, but look out for me now. I'm going for broke in this second set.

Friday, August 06, 2010

It's been over a year since my last post. Out of sight, out of mind. At least, I wish that was the way MS worked. The biggest thing I've learned is that I can pretend that I don't have MS, I can ignore it, but it's going to make its presence knowne whether I want to acknowledge it or not.

Living through a period with no exacerbations is not necessarily a sign that the disease isn't having an impact on your life. SO my last two MRI's look great.The annoying part of the illness hasn't been the attacks, it's been the day by day deterioration. It's so subtle, when you let yourself give into the fear and play too cautious. If you spend too much time playing it safe, it's not long until that's all you're capable of doing.

It's been a tough two weeks. I've been using my cane more often, but two times I try to walk without it, I fall. Publicly. Embarrassingly. Just when I've thought things were fine, I land on my backside. I've had to explain to way too many people why I have a cane. I wasn't keeping my illness a secret, but I wasn't publicizing it. And then the change in parking procedures at work makes me realize that it's time to get the handicapped placard. Damn it, I'm not handicapped.

I'm pissed. That's a good thing. Instead of sitting back and letting this illness continue to subtly rob me bit by bit, I'm fighting back. I have an appointment next week with a physical therapist to work on my gait and to start an exercise program. After all, not all fatigue experienced by MS sufferers is because of the MS. Some of the fatigue is caused by being out of shape. Just because I have MS, that doesn't mean I'm immune to the issues that healthy people deal with too.