RLS and Me, Part Two       

When going through a rough patch as I am, it’s frightening but necessary for me to ask if I’ll come through this and get beyond it. Will I stand on the other side wary from the realization that I was so vulnerable and that life as I knew it was indeed a ticking time bomb?

Just seven weeks ago, crawling into bed, I was naively accepting that the next day I would wake up, maybe shower, wash and blow dry my hair, apply some make up, get dressed, and drive my car eight miles to the store. There I might buy groceries, bring them home, take them into the house, unpack them, get the frozen foods into the freezer, store everything else where it belonged. Easy-peasy. No help needed, thank you.

Or maybe tomorrow was a doctor appointment for Ed, and I would position the car at the end of the ramp, get him into the car, drive the twenty miles or so to the doctor’s office, go in and get him a wheelchair, bring it back to the car, push him into the office, talk to the doctor, get him back into the car, take the wheelchair back into the building, and drive us back home. Maybe pick up a prescription along the way.

On the other hand, maybe I would drive to Gainesville, meet up with Cindy for lunch or Nic for breakfast. Such small things—after all, I was hardly participating in a marathon, was I? Small, simple pursuits. So small, in fact, I wasn’t expecting them to be ripped away. Are any of us? Ever?

Here’s the thing: I was assured that life was going to change for me at some point because I was on a dopamine agonist medication that had been reported to inevitably betray me. I had read plenty and had participated in enough support groups for RLS victims to know this medication I took every night would stop working and wreak havoc on my life. I simply didn’t know what that would look like.

I’d put myself through several sleep studies and talked to multiple doctors—one even an hour’s drive away—looking for some other medicine to take that would mask the RLS   symptoms and not make me eat compulsively. Looking for something that might even cure this syndrome that far too few people have in order for public awareness and therefore public demand for this condition that destroys lives.

Researchers knew that dopamine agonists were not stable. It makes sense that any medicine you take that stops working unless you add higher doses of it—in my case, again and again–is not a long-term solution. Dopamine agonists provide their own dopamine. Dopamine regulates your mood and your pain receptors. Dopamine agonists are a miracle until they backfire. And that happens in a few years for some or, in my case, twenty-four years. At least eight times the dosage was raised to accommodate my need to sleep unimpaired by spontaneous leg movement.

People in blogs, on social media, and participating in online support groups told stories about their experiences with the medication when it augmented, but I didn’t know what it would really feel like or that there would be so few knowledgeable people available and able or willing to help me.

Even armed with lots of information, I was in denial. I was ignoring the fact that something was about to mess with my ability to be relatively pain-free, to stand upright, to navigate stairs without fear, to walk unassisted, and to drive myself and my grandchildren to wherever we needed to be, those things were doomed to be taken away in a flash. And I had no idea what that would look like. Or if I would get it all back.

The wait continues, the ordeal is excruciating. Each new day is … well more on that in a few days or maybe weeks.