I Heart Speed

One of the things you hear a lot about when you're becoming familiar with MS is that fatigue is one of the most debilitating aspects of the disease. The stories are true, as it turns out. There are days when I never quite seem to wake up. It's as if I get stuck in that just-woke-up-and-still-groggy phase of the day. Having enough sleep doesn't seem to matter - I can sleep for 8, 9, or 12 hours and still be stuck in that phase. As with so many neurological symptoms, we don't quite have a vocabulary to describe it. It's a feeling of being tired, yes, but it's not a normal feeling of being tired. There are at least two kinds - the "I want to go back to bed" kind and the "I'm plenty alert, it just takes way too much energy to lift my arm" kind. And there are nuances to both.

When I've talked about how it manifests with me to friends, they respond with alarm. What, it's a bad idea to rest my eyes when stopped in traffic? It's not as if I'm actually driving with my eyes closed (hardly ever).

Enter Provigil. My neurologist mentioned it to me as a possibility back in June, and said that if I decided I needed it I could just call it in, wouldn't need an appointment or anything. I resisted for half a year, but at my appointment a few days ago, I went ahead and asked for the prescription. I had more or less decided I wanted it a little while ago, but when I actually fell asleep at my desk the day before, that cinched it. Wow - what a difference it makes. I've been resistant because I don't like to rely on pharmaceuticals any more than I have to, and I worry about the long-term effects of medication. I'm all too aware that bombarding my body with strong chemicals is a risky proposition, even if they do make me feel better in the short-term.

I haven't lost that awareness, I've just given in. It really does make so many things much easier. Like staying alert while driving, for example. And getting through a day. And getting through a karate class. The second half of last week, I really felt like I was able to actually put some energy into my training, for the first time in I don't know how long.

The side effects aren't bad - dry mouth, a medicated feeling. I can tell I'm on something, and it does feel a little like speed. It's not clear to me whether I have more energy than I did when I was "normal" (not like I've ever been normal - but, you know, not diseased), or if I've just become so accustomed to dragging myself through every day that 'normalcy' now bears an uncanny resemblance to 'speed freak.'

Provigil is not habit-forming, which I take some solace in. From an objective viewpoint, I'd rather not take it. But from an experiential standpoint, it's quite wonderful. For the past 6 months or so I haven't wanted to do much of anything - a perfect vacation, to me, was to stay home on the couch. Except that too much of that inevitably left me feeling depressed. With Provigil I actually feel like going out, spending time with friends, experiencing more of the world. Small tasks like cleaning the kitchen (to say nothing of actually leaving the house) are no longer overwhelming.

So, here I am. I've resigned myself to taking Provigil, at least some of the time. At least I don't have to inject it, and I can skip a day without guilt - neither of which is true for my other drug, the "disease modifying drug" called Copaxone - which will do nothing for my symptoms, but may keep me out of a wheelchair in the long-term.