I have Restless Legs Syndrome.

I rarely talk about it. It sounds like a benign and trivial condition everyone experiences at some stage. To some extent that is true, but my restless legs are severe and chronic. And normally extremely well managed.

Like most problems, there are people who have it much worse. While I have a lot of associated nerve pain, if I take regular medication it’s fine. I rarely notice it and when I do it’s not too bad. In that aspect of my life, I found a little pocket of normality.

Then the last two days I ran out of one of my RLS meds. The first night wasn’t too bad – a bit restless but I’d taken pain killers so they’d help make me dopey. Last night however… Well that was a different story! I am now painfully reminded of why I religiously take my medications.

First, I was really late taking the rest of my meds. I normally take them at 8pm but was late home, so I was already behind the eight ball. I also had a glass of red wine and a cup of tea early in the evening. Alcohol and caffeine exacerbate RLS – I really wasn’t thinking things through. I took my other meds around 10pm and added in a couple of extra pain killers for good measure – thinking that would be sufficient to help me sleep. It wasn’t.

It. Was. Not.

I had the night from hell. Aside from having no sleep whatsoever (something I have experienced more times than I care to reflect upon), I was physically exhausted but utterly incapable of keeping still – like the top half of me was sedated but the bottom half was determined to have a grand mal seizure. My lower back had a persistent deep ache, with intermittent nerve shocks running down my legs. Endlessly. Perpetually. Interminably. After a few hours, I was completely insane. I could not keep my eyes open. I could not go to sleep. My legs were running a marathon, dancing the tarantella, and shaking their sillies out.

I stretched and stretched and stretched. I thumped my back and legs as hard as I could. I rolled around trying to get relief and massaged my butt and legs until my hands cramped. For hours and hours and relentless hours. It was very un-fun. I wanted to run. At 3am. In the dark. Up the street. On my own. In the rain. I thought better of it.

RLS is often described as a creepy crawly feeling, only relieved by movement of the limb. That is true. But the creepy crawly feeling was like Aragog and his horde of starving acromantula had taken up residence in my lower back and were doing a merry dance while gnawing their way through my skeleton. The ache in my back went through to my core. I needed a deep tissue massage but it wouldn’t be enough. No amount of massage alleviates the restlessness. I wanted to bend backwards and snap in half. Nerve shocks ran up and down my legs and all the while, I was exhausted.

So tired. So very, very tired.

I had a little brain snap about 3am, succumbing to binging and self-harm – go-to soothing mechanisms. Five bowls of cereal anyone? It didn’t help the RLS but it gave me something to do and focus on, and fed my energy levels. Self-harm is incredibly soothing. It’s been months since I harmed – I am genuinely trying to stop. Like really genuinely! But I was outside myself last night. I now have five long cuts on my forearm. Not deep. Not dangerous. But just like a hippogriff lashed out with its talons to remind me I am fallible.

I have had two prescription meds that help my RLS for about eight years. One is an anti-parkinson drug that assists with the overwhelming urge to move. The other is an anti-epileptic for the nerve pain. Together they have saved my life. Prior to being prescribed these meds, I had nothing that helped. I was managing perhaps 20 minutes’ sleep at a time, maybe three of four times a night. I had people telling me I wasn’t tired enough. I wanted to slap them in the face with a wet fish. I felt like I was becoming psychotic. Every time I got in the car I fought an overwhelming desire to drive as far as I could and smash into a tree. I would morph between too tired to function and so manic I could move mountains. The relentless urge to move my body, stamp my feet and fidget like a toddler desperately needing a toilet, annoyed not only me, but everyone around me. Discovering those two meds changed my life. Really, really changed my life!

Forgetting to check I had some at home was a lapse in judgment I will not do again any time soon! As soon as the pharmacy opened this morning, I flew down, filled the scripts, and took a double dose of both meds. It took two hours for them to work, but eventually I slept then spent the day in bed. I awoke feeling floppy and groggy as the meds wore off. The ache is back, the twitching is starting and I’ve just taken my night-time dose hoping it kicks in soon. Floppy and groggy trumps psychotic any day of the week.