What Do I Feel?
Explaining how restless legs syndrome (RLS) feels just might go down in history as my single greatest failure.
As a child, I started tongue-thrusting as a way to cope with my restless legs syndrome and restless genital syndrome (RGS). However, my mom didn't like it. How dare her otherwise flawless child have a flaw?
My mother and caretakers would force me to stop my coping strategy
I'm smiling as I type this, because she wasn't malicious or even narcissistic; she was just a mom who loved her child and wanted her to be as perfect as humanly possible, and my constant tongue-thrusting sort of threw a wrench in things.
I was and still am her only child, so all her hope, so to speak, rested with me. She always watched me whenever she was home and would ensure our domestic staff did the same when she was working or away from home. They would constantly force me to stop tongue thrusting. It earned me some whooping and numerous name-calling, but I didn't care as long as I kept doing it.
'What do you feel?'
What they didn't know was that the tongue-thrusting was the only thing that kept my frustrations at bay. I still find myself doing it from time to time now as an adult. I would cry for hours whenever I was forced to stop, but I couldn't quite explain why it was important for me to carry on.
My mum would often ask, "What do you feel?" Oh, how she tried to understand, how she tried to help ease my suffering. But I really never could find the appropriate word. Eventually, my mum let me be.
How I've described my RLS and RGS
I've said, "My legs hurt," "It kind of tickles," "My vagina feels weird," and "My legs feel weird"; "I feel the urge to keep moving," too, and "I need to stretch desperately."
"I can't quite explain" was and still is the most used and the most accurate one, because 3 decades later I still can't quite explain.
How my friends and family describe their symptoms
My 6-year-old described it thus: "It feels like I have a thousand frogs jumping up and down inside my legs."
My friend G said, "I'm not quite sure, but it's close to laying on the street and having bicycles drive over your legs over and over again."
D said, "I don't know, Joy. If legs had depression, then that would be it. Depression of the legs."
N said, "It feels like someone is tickling the insides of my legs nonstop, but not in a fun way."
My goddaughter, who is 8, said, "Aunty J, have you ever had the inside of your eyeballs itch? You know you can't get to the itch, so you just keep blinking? That's how my legs feel."
It's difficult to describe the pain and discomfort of RLS
I'm not sure anyone with restless legs syndrome can quite tell you exactly what it feels like for them. I think that's also what makes it even worse — the inability to put your pain and discomfort into appropriate words.
What does restless legs syndrome feel like to you?
Do you feel comfortable advocating for yourself in a medical setting?