What Is Normal? A Lifetime of RLS

RLS. Just 3 little letters. Yet what they stand for can have so much impact on us daily. Restless legs syndrome (RLS) can snatch away not only simple pleasures but also make our daily routine stressful.

Having had RLS since I was very young, I'm not sure that I know what normal is, but I do observe the ease with which other people seem to move through a regular evening. Dinner, some TV, maybe read a book. Of course, I do those things too, and even though my symptoms are fairly well controlled, there is still always a burr in my saddle, a thorn in my side, a relentless pesky feeling of bugs in my bones that never quite goes away. The insidious ways RLS filters down into even the littlest bits of life can make coping a full-time job.

It would be nice to feel absolutely nothing

I admit to looking longingly at other people's legs. How nice it would be to feel nothing going on in there. The same nothingness I feel in my earlobe or elbow. Something I think most people take for granted. To just sit comfortably, without having to ignore the bee in your ear, as my father would say, seems like a dream.

Though we may be used to it and even cope well, it's undeniable that this constant irritation, no matter how mild, has an effect on us. If only there were an off switch.

Never knowing what the night will bring

RLS does not want us to sleep. And as if it couldn't be any even more evil, it attacks just when we need to rest the most. Sometimes it gives us a heads-up that it's going to be a rough night. Other times it fools us into thinking that maybe tonight we just might have a good sleep.

It may decide not to let us fall asleep at all, or it could jerk us awake in the middle of a good dream. Either way, it can make bedtime stressful when you don't know what you're in for from one night to the next. We make do with whatever sleep we've gotten and often pretend like it was enough.

Traveling is lovely, in theory

My friends and family love a good road trip. I live on an island that is only accessible by air or by a 2-hour ferry ride. Most mainlanders think it is charming. And Islanders love to leave, even just for the day. Like a little holiday. And it does sound lovely in theory. Watching others sit and have a cup of coffee while watching out for an orca or seal sighting looks like an amazing time.

But I'll be the one pacing the deck, keeping one eye on the coastline, willing it to come closer, faster. I'm not sure why airplanes and sea travel seem to have such an effect on us, but they do.

Still dreaming about finding that magic bullet

I do consider myself lucky. My doctor and I have found something that works well for me. But, having said that, it is still far from perfect. It is all relative, I guess. In comparison to what my first 40 years were like, this is heaven.

I'm sure all of us with RLS fantasize about finding that magic bullet. Something that would just make RLS go away. As much as I understand how difficult studying and treating neurological disorders is, I still find myself racking my brain for some clue, especially late at night. Something I'm doing or not doing that I could change. Something that would allow me to comfortably sit with a cup of coffee and watch out for an orca or seal.