A few weeks ago, I received the greatest news I could possibly receive. Words I had been waiting the better part of a decade to hear. When it finally happened, it was everything I could do to restrain my entire body from collapsing to the ground then and there, half weeping, half screaming with ecstatic joy.
In the last year or so, I have done many things which many (Facebook among them, apparently) would consider “Life Events”. I relocated nearly a hundred miles away from my immediate family and the only world I have ever really known, I have married the woman I love and the greatest person I have ever known. I have explored creativity within myself that I never thought possible. On any sane, reflective, objective, wanting to remain attached to my testicles day, I would never dream of comparing this “Life Event” to any of those. But on this particular day, just a few weeks ago, I came BLOODY close.
I should probably preface this BLOG with a few quick notes. Firstly, a note of sincerest apology to anyone who may read my rambling tangential offerings with any interest for the frankly unforgivable absence of bloggage in recent times. Secondly, this particular entry will regrettably be bereft of any direct relation to screenwriting or writing related substances. I can only hope to ease this twin poison arrow with the assurance that I have a veritable buffet of news on those fronts which I plan to serve up to you all in due course. For the meantime, if anyone wishes to change the channel to something about Gypsies or those delightful people from Essex, I understand. If however you want to push on through, then you have my gratitude.
If I’m perfectly honest with you, I’m not entirely sure why I’m choosing here and now to talk about this. It’s not a “woe is me” thing, or even “a look at me” thing. I don’t know, maybe it’ll become apparent to me as I write. All I know right now, is that this is all a bit strange for me. Strange, because this blog involves me doing something many of you who know me will know is not one of my strong points. Remembering. Not the best of rememberers, me. And yet, for as long as I can remember, I was a fidgeter. It’s what my mother always described me as, and quite accurately too. I never enjoyed long car journeys, or going to the cinema. It was always, uncomfortable. That’s the only way I could describe it. An uncomfortable ordeal. Blinding what should otherwise be a pleasant, enjoyable experience. I suppose 10 year old me these days would be diagnosed with some form of “Won’t sit down, shut up, or listen to grown up’s” disease. But back then, in the humble 80’s, I was just a fidgeter. It wasn’t even really something I noticed, or was particularly aware of. It’s only now, looking back, that I recognise it for what it was.
But around 10 years or so ago, I became keenly aware of the fact that my fidgeting was encroaching on my sleep. An all encompassing urge, a need, to squirm, to kick, a perpetual need to keep my limbs moving. Legs, arms, my every extremity, screaming at me to move. If the blood pulsating through me could speak, it would surely be screaming. Ironically, that scream would most likely be blood curdling.
Not long after, I met Cassandra. I won’t bore you with the sentiment, but needless to say I was happy. As we grew closer and spent more and more time together, I found that something as simple as cuddling up together to watch television in the evening, or lying closely in bed together at night, were ordeals. It seemed the greater the need to sit still, the greater my body’s desire to rebel. Did my body hate intimacy? “She’s not right for you, reject her like we – your faithful extremities – are doing”?
It was my mother-in-law – although at the time merely that scary lady who knew my girlfriend longer than me – who first introduced me to the term “Restless Leg Syndrome”. Clearly this woman is mental, I thought. It sounds like one of those bogus, new age, la di da labels attributed to wingers, whiners, and wankers. But sure enough, the next time we visited, I was presented with a page torn from a medical magazine of some sort documenting the very real… very… actually… bloody accurate symptoms I was experiencing. Shit. Maybe the mental girlfriend knower lady has a point? Maybe I’m not just a fidgety twat? I made an appointment with my doctor, my borrowed magazine clipping in hand. I was pretty excited. Giddy even. I have a thing. A proper disorder. And the smart man in the room with the bed with paper blankets is going to fix it. I’m troubled, but heal-able. Oooooh. Get me. When my name was called by the ridiculous and handsome (but not ridiculously handsome) doctor man, I followed him in to his office room.
“What seems to be the problem, Mr Regan”?
He pronounced my name as Reagan, like the president. But I didn’t care. Usually in times like this I would channel my father and proclaim that the correct pronunciation was “Ree-Gan”, and that “Ray-Gun” was the guy they shot. But not this time. On this occasion, I didn’t let it bother me. This was the man that was going to fix me. For him, I’d let it slide. This man would forever get a shitty pronunciation of my surname pass, for this was the man who would cure me.
Perhaps a little over zealously, I began reeling off my symptoms, only to be cut off before I barely began.
It was matter of fact. Just like that. His face was stone. It was sure of itself, and it was bored of me. I made a pretty feeble attempt at a protest, even producing the magazine clipping at one point, but it was no use. It was growing pains. The smartest man in the room had said so. I bowed my head, and I left his room. I think I even apologised.
As time went on, things got worse. My symptoms gaining momentum with every passing night, a perpetual nightmare, I was sleeping less and less. By around 2008, I was sleeping between 2 and 5 hours every couple of days. On average. Sometimes, I wouldn’t sleep for days. Until eventually, my body would give out and I’d collapse. I’d sleep in the backseat of my car on my lunch break at work, I’d ruin precious weekends with my wife and puppy catching up on a week’s worth of lost sleep. It was perhaps inevitable that my mind was soon to suffer. Concentration, short term memory, my ability to focus, all quickly rendered slaves to my convulsing extremities and their thievery of my sleep. Simple tasks, such as a trip to the shops, became a nightmarish experience. On one particular occasion I made my way from my house to the local shop, a literal 5 minute walk, armed with 3 every day items in my head. The moment a passed through those double doors my mind was erased. Not just in a typical ageing male “Why did I walk into this room, again” way. It was literally as though I had awoken inside my local Co-Op. If I’d have been lucky enough to be dreaming I’d have surely found myself naked at this point. But I was awake. Awake and bloody confused. I did the first thing that came to mind and I called my girlfriend. My girlfriend, who I’d only said goodbye to literally moments ago. With horror tinged palpably in my vocal chords, I announced down the phone: “Babe, I’m in the shop”. Predictably, I was met with a knowing “Yeah?”. Of course I was, that was where I was supposed to be. But apparently, I didn’t know this. “I’m in the shop, and I don’t know why!?!”.
And so, this became my life. I become Simmy, the absent minded beardy fella. And to be honest, I didn’t mind. What I minded, was that I still couldn’t cuddle up to my own girlfriend at night. What I minded was that I was still only sleeping when my body could no longer go on. What I minded was trying to hold down a 9-5 job, getting up for work when I hadn’t actually been to sleep yet. And it was getting harder and harder to hide it. Managers started to notice. Honestly, why wouldn’t they? I was a zombie. I barely spoke to people, barely emoted. My primary purpose each day was getting through to the next one.
For a long time, I whole lot of nothing happened. I saw GPs, specialists, neurologists. On several separate occasions I was diagnosed with depression, an iron deficiency, sleep deprivation, a central nervous tick, sent for MRI’s, told I had an abnormal fundus… I still don’t know what that means… and then diagnosed with depression again. Amongst all of this, I should note that I was actually prescribed something called Amitriptyline by an admittedly very attentive and sympathetic neurologist. He was very smiley… and was kind enough to note with some alarm in his eyes that he had just come straight off of an over night trans-atlantic flight, but compared to him, I looked like shit. We keep in touch.
But the Amitriptyline, it didn’t work. It helped me sleep, but the journey there was more painful than without it. My body wasn’t so much helped to sleep, as it was dragged kicking screaming. And then the following day I would be consumed by such an overwhelming fog for hours on end. And it had to stop. As simple as that. The ends did not justify the means. If you’ll forgive the platitude, it was like putting a plaster over cancer. Papering over the walls, if that makes you feel any better. I had gained a measure of sleep, but at what cost? The symptoms were not relieved, if anything they were exasperated by this macabre chemical concoction. And so I went back, to the life I led before. Of discomfort, of limited intimacy with the woman I loved, of lunch time nap times.
I guess I’d sort of resigned myself to that life. This was who I am. Forgetful, insomniac, Simmy.
But then there came a straw that obliterated the camel and his back.
My wife and I had moved. The west country was now our home, and while not everything was perfect, we were perhaps the happiest we had been in years. Cassandra for certain had never looked more at peace with the world than when we were on the beach at Sand Bay or in Weston Woods, just us and our dog. If we were to move back to Banbury tomorrow, those fond memories of her smiling face will be what I take back with me. But my screaming, angry limbs had of course followed me. The better part of a hundred miles from home and I was still experiencing all the pain and discomfort I had before.
I had a new job. It was basically my old job, in an office, twatting about with spreadsheets, but I was near the sea… so yay! It was on one particular day, after three straight days of genuinely zero sleep hours in the bank, that I hopped in my car and headed to work. Looking back, I know I should never have got in that car. I shouldn’t have even gotten out of bed. Call it adrenaline, call it bravado, call it stupidity, I know which one I’d vote for, I did it anyway. To cut a long story short, I blacked out at the wheel. Twice. The first time, I veered into the on coming traffic lane… luckily there was a distinct absence of actual oncoming traffic at that moment. The second time, I almost became one with a petrol station.
Let me be very fucking clear, I don’t tell you these things out of some misplaced machismo. I was a dickhead. A dickhead who could have killed people. Nevermind myself, I could have hurt innocent people, going about their lives. I pulled into the nearest layby I could find, shaking. At this point I was probably a third of the way to work. I made a decision. This had all gone too far. Shit had to change. I had lived in the South West for the better part of six months, with a known condition, even if I didn’t actually know what it was, and I wasn’t even registered at my local GP for Christ’s sake. And I now here I am attempting to drive to work when I’d been laid wide awake for over 3 days. I made the decision to turn back and head home. The trip back was surprisingly less eventful, perhaps my adrenaline was spurred by the imminent prospect of my bed. At home, I did some quick research and called my nearest GP.
If you’ve ever had the misfortune of having to call your local GP, you’re no doubt keenly aware of the patronising, almost lethargic IVR delivery that greets you. I was asked, monosyllabic, if my call was an emergency, the entire subtext of such as question being clearly rooted in “Explain why exactly you’re bothering me”. Is it an emergency? If the answer is No, then clearly I am to be labelled a twat with a tickly cough or a sniffly nose. Take some calpol and piss off home you waster. But what, praytell, if the answer is Yes? Fucking hell. Who answers yes to that question? Is it an emergency? No. If it was an emergency, I’d go to the fucking hospital, wouldn’t I? When I hear the electronic bleeping barely disguised as a humanoid practically daring me to proclaim my minor discomfort as an emergency, all I can do is look down at my arrogantly still attached limbs and sickening lack of exposed bone matter and think “FOR FUCK SAKE!! I’m trying to get a doctor’s appointment here, the least you could do is severe yourself from my body!!!”
But eventually, mercifully, I get through. I’m shaking. I’m actually shaking, and it’s just a pissing phone call. Maybe I was sleep deprived, maybe I was running on adrenaline, maybe I was scared she’d notice I pressed 4 and this wasn’t a real emergency. Either way, a kind voice soon greeted me. I demanded an appointment, and I was granted one. 3pm later that day. The end. Wow. I had to sit down after that. She hadn’t even sniffed at my “emergency” telephone pad offering. Just kindness, that’s all I was greeted with. I called work, predictably, thankfully, they were absent mindedly accepting of my absence. I’m in when I’m in. They’ll deal with me later. I went upstairs. It had been 15 torturous minutes since I returned home intent on sleeping the shit out of my bed. Naturally my wife was confused. Around 45 minutes ago I’d left for work, but now I was home again and trying to climb back into bed. With the last ounce of energy I had remaining, I begged of her to let me explain in a few hours. Mercifully, she relented, simply glad to have her husband to cuddle up to.
When I awoke several hours later, I explained everything to her. It wasn’t until the words actually left my lips and I saw her huge, terrified brown eyes that I realised what a cunt I’d actually been. She stared protesting, quite rightly, that no job is ever worth risking my life for. I felt awful. She was right. I’d risked not only my own life, but the lives of anyone who may have been on the road with me that morning. I had worried that my sleep would have somehow dulled my resolve and determination when heading to the doctors, but my distinct dressing down had only served to prove that I needed to be firm.
I marched in with steely determination. With my best no nonsense face, I barked my name at the receptionist and was beckoned – with all the icy tone I deserved – toward the waiting area. Sure, I’d been less than pleasant towards the receptionist, but this was about a state of mind. I wasn’t going to take no for an answer this time. I wasn’t going to meekly accept Growing Pains or Depression for an answer. Those days were over. If it had to be, then this was war. I knew what I had. It was what my mother-in-law had told me the better part of a decade ago that I had.
Sitting in my seat in that waiting room, I found myself seething. I’d never been seething before. It was weird. I went over it again and again in my head. The script I would play out the moment that door shut and he asked me what I was wrong today. Today? Today!?! I’ll tell you!! Oh, I was buzzing. No! It’s not fucking depression, it’s not fucking growing pains!! And here is a chair to your fucking face you arrogant prick!!! I was probably getting ahead of myself. It’s their own fault for making me wait so long in a quiet room.
And then, my name was called. “Simon Regan, please come up to room 3 on the second floor. Simon Regan, please come up to room 3 on the second floor.” I repeated that over and over as I headed toward the fabled room number 3. I walked in, and was greeted by the man who would soon endure my wrath. He asked me why I was there, and I politely, shakily, described my symptoms. I mentally gathered my arsenal, ready to strike. There were rude words – at least a 9 on the swear scale – sitting in the wings of my vocabulary, waiting to be called upon to spit like venom upon this arrogant prick casting judgement upon me. But they weren’t needed. None of them.
“Seems to me like you have a severe case of Ekbom disease , colloquially referred to as Restless Leg Syndrome.”
I was in love.
All the hate, the anger, the rude words, they fell away. The posh bastard gets it.
And so it came to be. The words I had waited the better part of a decade to hear. I had been officially diagnosed with Ekbom disease – aka Restless Leg Syndrome. Armed with a prescription tailor made just for people like me, I sent a text to my wife giving her the news. She would later tell me that she called her mother to share this news, letting her know that the diagnosis she gave me the better part of a decade ago had finally been confirmed.
And so here I sit. Fair enough, it’s 4am. But it’s a process, right? I take my pills every night, and so far they magic away the pain. The symptoms are all but gone. Genuinely gone. It hasn’t been without its hiccups along the way. After my first week on this regime, I made the utterly ridiculous decision to not take them over an entire drunken weekend. Then, Sunday evening I resumed my heady dosage. Early Monday morning, my phone’s alarm erupted with synchronistic precision. Bolt upright, I reached for my phone, mounted as always on top of my dog’s cage at the end of the bed. But something was wrong. As I tried to find my footing on the bedroom floor, it was as if I was attempting to stand inside a black hole. Confused, half awake, I elected to ignore my legs and focus on using my arms to pull myself up, but that didn’t work either. My entire right hand side had simply fucked off on holiday. On your own dickhead. I collapsed on the bedroom floor, my phone’s intentionally atonal alarm still reverberating throughout the room.
Inevitably my wife soon awoke, demanding quite rightly to know why I hadn’t killed the alarm in it’s sleep like a real ninja. Like the shit ninja I was, I quivered back that I couldn’t stand. That my body… didn’t work. Half asleep, her recommendation was that I stay there, until I could. It was sound advice. No arguing here, really. So I did. And eventually, normal service resumed. All limbs restored. But I learned a valuable lesson. My prescription is intended for Parkinson’s patients. It is a Dopamine Agnostic, meaning – in short – that it fucks about with the chemicals in your brain to make you better, so don’t fuck back.
When I started to write this blog, I told myself to just write it all out. Every minute of every pertinent moment I considered important to this story. Then, like any good writer, I would go back and I would rewrite, edit, peel back and sacrifice anything unnecessary. But on re-reading, I found that it is all necessary to tell this story. To explain why I needed to tell it. Every embarrassing moment, every time I wanted to punch myself out of existence. I kept it in.
So, listen, if you made it all the way to this point, please let me know. Comment here, or on Facebook. Subscribe, tweet, whatever. It would mean a lot to me to know that you at least got this far through something so selfish and self indulgent on my part. And if this goes some way to helping someone else suffering from RLS or related symptoms, then that’s nice too.
In the meantime, be excellent to each other.