Finding Hope

I’ve tried to describe emotional aspects of having severe or refractory RLS. The word “refractory” in medicine means “not treatable” or “resistant to treatment.” Those of us in this RLS category have horrible symptoms at any time of day OR night. The symptoms and pain will disturb any facet of daily living. RLS does not discriminate. I’ve had feelings of not “fitting in” in social settings, especially knowing that I could have an uncontrollable bout of restlessness. Or worse yet, my sheer terror of having an episode of RLS just when I have to be calm and quiet -- I’ve lied to get out of such situations. I feel very angry at being powerless over such an invasive illness. RLS is a monster that is all-consuming. I came to realize that I had lost the power of choice physically, and was close to losing the one most valuable of feelings: hope. Realizing that hope is a huge part of living happily, I aggressively sought help.

In one year, three neurologists and four more attempts at medication adjustments resulted in three visits to emergency rooms and two calls to “crises on-call” telephone services, as I was having horrible medication reactions. I was exhausting all avenues for relief from RLS insanity. There are several RLS Quality Care Centers and it seemed to make sense to contact one and hope for admission. There was one neurologist I wanted to contact as I had seen him years ago regarding a medication. Why see him now? I didn’t know, but it was significant. No, it was life-changing. My physician, it turns out, is very familiar with RLS and has treated refractory cases successfully. His knowledge and treatment skills are based on sound, demonstrated and practical RLS treatment protocols. And, he is a really great guy. Within two days after my first visit, I started my journey into wellness. That was three months ago.

Resignation is understandable. But, now I know that relief is possible. Basic things have changed in my life. It was just a month ago that I bought a book; A simple mystery novel written by an author that I loved to read when I could sit quietly, empty my mind, and enjoy fiction as fact without disturbances from my RLS. What a joy it was to go to a bookstore and actually feel like I had a purpose, a reason in being there! That was groundbreaking.

My RLS was an imposition on my wife. She would see me walk for hours during the night doing my “circle 8” in the kitchen, living room and dining room. And she felt it. She felt the pain of not going to movies or plays or concerts. Felt the pain of being uncertain about gatherings because “my legs hurt.” And she felt the pain of hopelessness, because that is what she saw at every failed attempt for a remedy. Two weeks ago we went to a movie that I would not have chosen because of content and appeal. I was able to sit through the movie, and was able to ask questions about it later sitting in our living room. Sitting. Quietly.

And now, there is the beauty of sleeping when I want to rather than reach the point of deathly exhaustion. I still have troublesome and unfortunate sleep behaviors learned over 25 years of illness that may not be corrected. I have already found the wonder of regular sleep versus desperation naps. A different world. So now, I’m positive I will be able to come close to experiencing a far better sense of being normal. It’s already started, and my accounts of health and really good rest are noticed by friends and family. I’m told that I look and sound different. Now, I again have hope. I have great hope that the rest of my life will be truly peaceful. I hope that at least one reader will try “just one more” physician or go to a recognized RLS Quality Care Center. There is a solution under some rock – don’t stop turning them over.