Greetings from a lifelong UK sufferer.
Posted: Sun Aug 07, 2016 12:54 pm
Hi everyone!
So I'm Simon. I am obviously new to this forum, but unfortunately far from new to WED/RLS.
I look forward to getting to know some of you, and more significantly to being part of a community which understands plight of a WED/RLS sufferer and what we go through.
Like many of you, my story is as long as it is challenging. I'm not usually one for sharing this sort of thing, but here and now seems as good a time as any. I hope you'll stick with me.
For as long as I can remember, I was a fidgeter. It was how my mother always described me, 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. A painful, uncomfortable ordeal. Blinding what should otherwise be pleasant, enjoyable experiences. 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 15 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. The wonderful light that would one day be my wife. 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.
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 and whiners. 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. Maybe the crazy girlfriend knower lady has a point? Maybe I’m not just a fidgety fool? 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 room.
“What seems to be the problem, Mr Red Dog”?
Of course, I have omitted my actual surname here, but needless to say he pronounced it incorrectly. But I didn’t care. Usually in times like this I would channel my father and proclaim the correct pronunciation, 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 sh*tty 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.
“Growing Pains.”
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 convenience store. 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 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 was the absented minded guy. 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, a 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 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 sh*t.
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 an overwhelming, unending fog. And it had to stop. The ends did not justify the means. 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.
But then there came a straw that obliterated the camel and his back.
On one particular day, after three straight days of genuinely zero sleep hours in the bank, 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 clear, I don’t tell you these things out of some misplaced machismo. I was an idiot. An idiot who could have killed people. Nevermind myself, I could have hurt innocent people, going about their lives. I pulled over as soon as I could - shaking. At this point I was probably a third of the way to work. I made a decision. This had all gone too far. 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 doctor.
When I awoke in my bed several hours later, I explained everything to my girlfriend. It wasn’t until the words actually left my lips and I saw her huge, terrified brown eyes that I realised what a terrible person 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 I had the better part of a decade ago.
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. But they weren’t needed. None of them.
“Seems to me like you have a severe case of Willis-Ekbom Disease, colloquially referred to as Restless Legs Syndrome.”
Love.
I was in love.
All the hate, the anger, the rude words, they fell away.
Armed with a prescription tailor made for people just 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.
But those early days on Pramipexole weren't without their hiccups along the way. After my first week, 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 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 gone on some sort of holiday. 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 terrbile 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.
When I started to write this post, I told myself to just write it all out. Every minute of every pertinent moment I considered important to this story. Then 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 my 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. 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.
In the meantime, be excellent to each other.
So I'm Simon. I am obviously new to this forum, but unfortunately far from new to WED/RLS.
I look forward to getting to know some of you, and more significantly to being part of a community which understands plight of a WED/RLS sufferer and what we go through.
Like many of you, my story is as long as it is challenging. I'm not usually one for sharing this sort of thing, but here and now seems as good a time as any. I hope you'll stick with me.
For as long as I can remember, I was a fidgeter. It was how my mother always described me, 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. A painful, uncomfortable ordeal. Blinding what should otherwise be pleasant, enjoyable experiences. 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 15 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. The wonderful light that would one day be my wife. 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.
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 and whiners. 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. Maybe the crazy girlfriend knower lady has a point? Maybe I’m not just a fidgety fool? 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 room.
“What seems to be the problem, Mr Red Dog”?
Of course, I have omitted my actual surname here, but needless to say he pronounced it incorrectly. But I didn’t care. Usually in times like this I would channel my father and proclaim the correct pronunciation, 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 sh*tty 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.
“Growing Pains.”
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 convenience store. 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 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 was the absented minded guy. 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, a 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 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 sh*t.
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 an overwhelming, unending fog. And it had to stop. The ends did not justify the means. 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.
But then there came a straw that obliterated the camel and his back.
On one particular day, after three straight days of genuinely zero sleep hours in the bank, 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 clear, I don’t tell you these things out of some misplaced machismo. I was an idiot. An idiot who could have killed people. Nevermind myself, I could have hurt innocent people, going about their lives. I pulled over as soon as I could - shaking. At this point I was probably a third of the way to work. I made a decision. This had all gone too far. 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 doctor.
When I awoke in my bed several hours later, I explained everything to my girlfriend. It wasn’t until the words actually left my lips and I saw her huge, terrified brown eyes that I realised what a terrible person 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 I had the better part of a decade ago.
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. But they weren’t needed. None of them.
“Seems to me like you have a severe case of Willis-Ekbom Disease, colloquially referred to as Restless Legs Syndrome.”
Love.
I was in love.
All the hate, the anger, the rude words, they fell away.
Armed with a prescription tailor made for people just 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.
But those early days on Pramipexole weren't without their hiccups along the way. After my first week, 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 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 gone on some sort of holiday. 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 terrbile 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.
When I started to write this post, I told myself to just write it all out. Every minute of every pertinent moment I considered important to this story. Then 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 my 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. 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.
In the meantime, be excellent to each other.