Here’s something I’ve never talked about before. Not here, at least. It’s a bit of a saga, and not everyone’s cup of tea, I bet. It’s often completely forgotten by me for hours at a time, but as the planet revolves around so that the sun won’t shine in our part of the world, I prepare for it. Every. Single. Night. For all of my remaining life, that will be so, unless the geniuses who happen to be working on RLS come up with a cure. For some, that would be a deal breaker, for others a life saver. For me, a life changer, even at this age.

I’ll start with last night and then back up.

I’m bad about misplacing things. My mind must be somewhere else when I set something down, because many, many times I simply can’t find an item I just had in my hand less than ten minutes before. And so it was last night with my little blue pill cutter that has my meds for RLS in it. I also have some of the tablets in a prescription bottle in the kitchen cabinet, so I went to get it when I couldn’t locate the pill cutter. And then I did find it, so, phew. Back up. My dosage of Pramipexole is 2.25 mg. But Pramipexole (Mirapex) doesn’t come in that doseage, so I have tablets at 1.5 mg that I cut in two halves and take one whole tablet and a half, equalling 2.25. I’ve come to that formula in a rather complex process, but you’ll understand why as you read, if you’re still with me.

Last night, I took one and a half pretty late in the evening because … doesn’t matter … pretty late. And I waited while I went about my whatever I was doing — probably trying to delete all the emails I have from people and sources I don’t know so I can get to the ones I want to read. Another story for another time. I yawned around Midnight, a sure sign the pills had worked, and was in bed by 12:30. Slept some, then up at 2 briefly, but I went back to sleep and slept until 5:28.

This is how I woke up: My right foot jerked. As if it had been prodded by an electrical charge. I jumped. I always think maybe that will be all. Don’t ask me why I think that; it makes no sense. It’s never all. So, it happened again. Since I’d gotten in bed so late, I didn’t want to get up at 5:30. Sometimes I just do it, but that’s when I maybe went to bed around 10:30. This time I wanted another hour or two of sleep.

So here’s what I did, after about the third or fourth spasm. I got up and went to find my purse. I found it, and in it were my earbuds . I put the right one in my ear, found This American Life on my phone, and started it playing in my right ear. Didn’t matter what story. Any one would do. I lay back down on my left side, had one or two more spasms, and then fell asleep. Ira Glass talked on without keeping me awake. He did, however, engage some part of my brain that wanted to listen–some part that was distracted enough to stop torturing me for a couple of hours. And that’s with medication.

Without medication I would not sleep, so this disease is called a sleep disorder. About 350 million people, worldwide, have it in various forms. All of us are unique, and most of us feel “lucky” that RLS is finally recieving some attention. Maybe enough doctors experienced it that research was begun, since alas, doctors can’t be thought to be imagining things can they?

My father had RLS back before it had a name. Doctors prescribed narcotics so he could sleep through the symptoms. When they wouldn’t prescribe them any longer, he switched doctors. No one believed him. Not me, not my mother, probably no one in the medical profession. God knows what they labeled him. It’s hard to describe, and I’m not sure what his symptoms were like, exactly,. People say, “It feels like bugs are crawling all over my legs.” “I can’t hold my legs still; they want to jump around.” And, like me, “It feels like an electric prod, and mostly only my right foot and leg.” Would you believe someone who sounded like that?’

More recently, medications have been developed to treat RLS, non-narcotic, and some of them are very effective. Take the one I’m on: Pramipexole. Back when I first began to be bothered by the symptoms to the point that I could not sleep, I mentioned it to a girlfriend and got lucky. She, too, (it effects more women than men) had RLS and had seen a doctor–a psychiatrist, no less–who prescribed Pramipexole. She got immediate relief. I got the doctor’s name, made an appointment and recievend the the same meds at .25 mg. and I, too, suffered no more. It was a miracle. For a long time.

Then, .25 wasn’t enough, so my doctor upped it to .50. Fast forward, and now you know what augmentation is. You need a higher dose to achieve the same relief. I’m up to 2.25, as I mentioned earlier, and that doesn’t alway work. Hence middle of the night podcasts. But that’s not the worst news, and here it is: Pramipexole has side effects: Compulsive behavior disorder. You heard it right. The higher the dose, the worse the side effect symptoms. Like the symptoms for RLS, the symptoms for the side effect takes many forms. Some people are compulsive shoppers, some gamble, some are sex addicts, and some, like me, are overeaters.

I’m okay if I don’t eat. However, as soon as I eat food, I want more. Especially sugar. My weight fluctuates depending on whether I’m able to stay on a strict diet or not. Usually not. My sucrose level is dangerously close to diabetic, my back is a mess. Granted, it would be anyway, since I haul and carry and lift much more than I should as the primary caregiver to a disabled husband, but I also suffer from back pain because I’m carrying more weight than my skeleton was designed to carry.

In a little corner of my mind, I’m angry with myself all the time.

RLS support groups are available through the RLS Foundation, and I’ve participated several times. That’s where I heard about the earbuds and podcasts trick. I share; they share; we all share and sympathize with one another. And we’re all waiting for a cure that doesn’t carry a side effect that’s as bad as the solution. Probably not in my lifetime. I’ve got my fingers crossed that neither of my grandchildren will get it. Chances are, if they do, it will be later enough in life that I will be a footnote on their medical chart.

Thanks for reading this far, if you made it. If you know someone with complaints about their feet or legs when they try to sleep (it can happen during the daytime to some people, and some children suffer with it, which seems unberaably cruel,) give them your understanding. As a matter of fact, tell them they can contact me if they are new to the condition.

Rest well, rise refreshed, and be your best self.

Namaste.