More Than a Feeling

Restless legs syndrome (RLS) is more than a feeling.

It feels like butterflies and pebbles. And creepy crawly caterpillars and tiger beetles. Punching bags and tugging toddlers. Throbbing heartbeats and pins and needles. But it is so much more.

RLS sensations cannot be controlled

I have been reliably informed that RLS is a neurological condition, but despite what my grandmother thinks, it’s not just all in my head. It is not something that can be controlled.

I have felt butterflies in my stomach before. I did not have a constant leg shaking happening at the same time. I have known my skin to crawl with fear and anticipation. It did not cause me to kick my legs all night long. I have had toddlers in a tantrum tugging at my skirt. I wasn’t forced to pace at the back of the theatre instead of sitting in my chair.

My heart has almost burst forth from my chest. But I could still sit on a plane without panic at the thought.

My thoughts are as restless as my legs

RLS is not just those achy breaky feelings that drive you to the brink of distraction. It’s an irrepressible need to move. To move a lot and very often. I sit at tables with one leg balanced over the other under my chair, shaking like a magnitude 7 earthquake on the Richter scale. I walk with an extra long stride in order to stretch out the muscles in my back and legs, which alleviates the spring-under-tension feeling that sits with me all day long.

RLS also seems to be inside my head. My thoughts are as restless as my legs. I don’t quite have ADHD, but I could be getting close. My whole life is just sitting in anticipation of movement — physical, psychological, spiritual. Everything about me needs to move. Rest is something I do not know well.

My restlessness impacts many areas of my life

Even with well-medicated, well-controlled RLS (i.e., I can sleep through the night), I am still restless. I do not know what it is to sit curled up with a book for hours on end. I do not know what it is to sit motionless through a movie or to go to the cinema and sit comfortably for 2 hours. Or to sit at a restaurant and not worry about spilling everyone’s drinks with my jiggly legs.

RLS is so much more than a feeling for me. It is a part of my life. It is a part of who I am – for better or for worse. It impacts the activities I participate in, the places I go, the people I hang out with. It is a condition that I have to manage, and I fear any time I travel that I might forget my medication and go through a night of torturous hell. I always feel a need to watch what I eat and drink in order to not antagonise the RLS beast.

I have accepted my RLS and still work to manage it

But RLS also does not define me. I have always been determined to go places and do things regardless. It has been important to me to manage the symptoms with diet, medication, exercise, and stretching – not to give up travel or movies because of the fear of sitting still.

While I can never say I have embraced RLS, I can say I have accepted it and managed it. I feel that is the best I can do under the circumstances.