A little love…for me

I’ve written before about how bad I am at optimism.

I know it’s nothing to be proud of. I know our thoughts have a direct impact on our lives and how we experience the world. I hate being so hyper realistic bordering on pessimistic. I really do. I just can’t seem to get myself to the place where I can allow myself the kind of peace that is supposed to come from thinking happy thoughts.

But sometimes? Sometimes one or two positive thoughts sneak in at the strangest possible times. Like today, for example. I am going out on a limb of positivity right now to make the following bold claim: I think the walking drug works for me.

There. I said it.

I have no idea how two little pills every day could have such a magical effect. It makes my brain hurt to think about how a chemical substance could trick my brain into thinking I can walk like a normal human again. But it appears to be doing just that. My legs feel like legs instead of what they usually feel like (something akin to alien limbs controlled by a will entirely their own that don’t like to bend or move properly).

According to drugs.com, Ampyra “is used to improve walking in patients with multiple sclerosis (MS). Dalfampridine produced an increase in walking speed in clinical trials. Exactly how it works is not known. It is thought to increase nerve function.”

“Exactly how it works is unknown.” Huh. That’s not shocking to me at all. What’s shocking to me is that it actually seems to be working at all. The Great Scott told me that some patients experience positive results from taking Ampyra but not all. He said there was about a 30% chance it would work for me. That didn’t sound like the best odds to me. But goddamn, if it doesn’t appear to be working pretty well. I might be the 30%! I almost can’t believe it.

Now I’m also characteristically realistic about this potential good news. I know it might not work for long. It might become less effective over time (TGS warned me of that). Some other horrible outcome could rear it’s ugly head at any time and I’d just have to deal with that. Drugs are complicated.

For example, Modafinil, the other wonder drug that I take daily for my overwhelming fatigue is definitely messing with me and not in a good way.

Modafinil works to keep my brain alert and it really does just that rather magically. But it also seems to make a lot of things work a little too well because I’m all of the sudden anxious, full of anxiety, unable to stop obsessing over strange things, maybe even a tad paranoid. It also messes with my sleep – this cannot stand. I need all the sleep I can get. I find it hard to read. That, too, is completely unacceptable. I’m struggling to finish book #4 of 2017 and this is not helping me reach my ultimate goal!

I wanted the drug to give me energy not make me hyper vigilant and notably crazier than normal. I’ve decided to lay off of it for a few days to see if I notice a change back to my version of “normal.”

The thing about the human body is that it is a vast, complex maze of interconnected systems and parts that nobody really truly understands. They try. They really try. But most “medicine” is an elaborate process of trial and error. Doctors know a lot, I realize that, but even the best ones will tell you that what they don’t know boggles the mind. The fact that I currently take more than one drug daily that uses the phrase “exactly how it works is unknown” to describe its mechanism of operation in the human body is a little bit mind blowing to me. But there you have it.

There are more drug adventures coming for me in the near future.

I have my last Tysabri infusion in March and then I am going DMT-free for two to three months. I will be on ZERO major disease modifying drugs for two to three months. This fills me with fear unlike any other I’ve ever known. I’m having horrifying visions of myself crawling around on the floor or sleeping 15 hours a day for three months. Then today while chatting with Cheryl, my therapist with MS, a different thought popped into my head..another oddly optimistic thought.

Maybe I will feel better without the big bad drug. Maybe it’s making me feel worse while it also appears to be keeping my disease in check. The side effects of the DMTs are hard to separate from the actual symptoms of MS. The Great Scott doesn’t think this current drug is the one for me. He seems much more optimistic about the potential for the “new goo,” as he calls it.

The whole process of modern medicine is about trial and error! You just keep trying and trying until you find the magical combination of things that work for you.

Instead of feeling frustrated by that fact, like I usually do, it sounds oddly hopeful to me tonight. I’m giving myself a little Valentine’s Day love and allowing myself to believe that the right combination is out there for me.

I will find it. It will help me. I mean, look at me! I seem to be walking.

 

Tell me what you think...