I had quite a rough day yesterday, while at the hospital. We were running tests for Epilepsy, so we could rule that out before diagnosing Narcolepsy. The results as expected showed no evidence of Epilepsy, however I wasn't able to get a diagnosis, even though I've been placed on Modafinil, until I see a Neurologist.
The consultant said I most certainly have Narcolepsy, and should stop driving, and he said the Neurologist will most likely say the same thing, but because I was in the wrong clinic, he would not diagnose me with Narcolepsy. I almost feinted out of shear anger at the situation. I said so "if it's not Narcolepsy what is it", and he said "no I think it's narcolepsy, but I'm not an expert".
This is how we roll in England, it might be free but the NHS don't half crap on you at times! Why couldn't he give the diagnosis? He's upped my Modafinil to 200mg, the leaflet says "this medication is used to treat Narcolepsy", I have major symptoms of Narcolpesy without Cataplexy, or maybe I.Hypersomnia, but it's closer to Narcolepsy in that the attacks sometimes are random and linked to how I feel. How many times can the N word be mentioned but no diagnosis given?
Another blog post in itself, I'll run soon is, blogging about it makes me angry, which makes me sleepy and when I have a heated conversation about it at work I also glaze over and go dizzy.
Friday, 16 April 2010
Thursday, 8 April 2010
Ode to Modafinil via a Daffodil
Good morning Modafinil,
You brighten up the neurons in my head like the sun brightens the sky, yet too much and you just won't let the day go to bed or die!
You hide tiredness like it's a sin and make worse any nerve or emotion I might be feelin', do you have a purpose to serve or are you just trying to be a nice form of Ritalin? Wait! Perhaps you are needed, but only to show to the world our efforts have succeeded. That drowisness can be kept at bay, so we may say we are able to stay awake today.
For that might be enough, to make us accepted once again in 24/7's broken society, where you are brought so sleep may be intercepted, put on hold, for modafavising by high sorority.
For it is not me who you are trying to mend, just an unspoken rule against being tired you are trying to bend. So modafinil, I really want to know, do you enhance a cognitive ability, or hide a disability, remember sleep isn't anything to be ashamed of; isn't it a vital facility?
It's no longer day, so please leave my head, I may soon need to retire to bed!
Tuesday, 6 April 2010
Sleep Disorders and Driving
Oh boy, this is a tough one. I live in the UK and although we do have our fair share of bad drivers, we also have our fair share of awareness campaigns, "Tiredness Can Kill" being one of them to encourage the taking of breaks.
Napping Nirvana
If trying to find the right place to nap in is an art, then I think we can agree, the front car seats, maybe even the back if you are lucky to have a bigger car than me, isn't this napping Nirvana? The reclining seats in the car, the soothing yoga CD, lovely smells from the zen magic trees, the eye mask in the glove box and the jacket to cover your head, isn't it such a wonderful place to take a nap in? An extension to home, a sanctury in the world of chaos that surrounds you? You've found in the car the ideal conditions to retreat to and now it might be swiped away from you as if you aren't suffering enough?
Of course it is right that if you are too tired to drive, you shouldn't and ethically speaking I agree, but that catch 22 does place huge pressure on me at the moment. The car is the best place for me to nap in when I'm out, because it's my car, I have the keys so if I'm out on a day trip and the sleepiness hits at 3pm, I can toddle off for half an hour and toddle back to what I was doing fairly quickly and without bothering anyone. I don't need to ask myself for the car keys and it's saving me a lot of hastle in terms of finding a room at work for the purpose of managing the EDS.
This PDF says it all really.
So possibly having to surrender and reapply for my driving license based on a probbale diagnosis of Narcolepsy in just over a week, is actually quite a shock to the system, not only for the loss of independant travel and quick journey times, but because it's my safe place to take a nap in. It's the ultimate "kick in the nards" for me at the moment, it could mean an end to the morning swims too.
I'm mourning a loss here, of course it's a big deal, equally if I did have a crash, not only is my insurance claim on the wonk and likely to increase the premium, a crash might injure me pretty badly, who knows and would automatically take my napping nirvana away also, as would a car theif. So either way really, good things come to an end, albeit temporarily of course. Maybe, maybe not, how long may it take to gain my driving license back after I've surrendered it? Surrendering it does help my case it's a "guilty plea" and looked on kindly by the DVLA. But why now? Why this? Don't they think I've had enough punishment yet?
Napping Nirvana
If trying to find the right place to nap in is an art, then I think we can agree, the front car seats, maybe even the back if you are lucky to have a bigger car than me, isn't this napping Nirvana? The reclining seats in the car, the soothing yoga CD, lovely smells from the zen magic trees, the eye mask in the glove box and the jacket to cover your head, isn't it such a wonderful place to take a nap in? An extension to home, a sanctury in the world of chaos that surrounds you? You've found in the car the ideal conditions to retreat to and now it might be swiped away from you as if you aren't suffering enough?
Of course it is right that if you are too tired to drive, you shouldn't and ethically speaking I agree, but that catch 22 does place huge pressure on me at the moment. The car is the best place for me to nap in when I'm out, because it's my car, I have the keys so if I'm out on a day trip and the sleepiness hits at 3pm, I can toddle off for half an hour and toddle back to what I was doing fairly quickly and without bothering anyone. I don't need to ask myself for the car keys and it's saving me a lot of hastle in terms of finding a room at work for the purpose of managing the EDS.
This PDF says it all really.
So possibly having to surrender and reapply for my driving license based on a probbale diagnosis of Narcolepsy in just over a week, is actually quite a shock to the system, not only for the loss of independant travel and quick journey times, but because it's my safe place to take a nap in. It's the ultimate "kick in the nards" for me at the moment, it could mean an end to the morning swims too.
I'm mourning a loss here, of course it's a big deal, equally if I did have a crash, not only is my insurance claim on the wonk and likely to increase the premium, a crash might injure me pretty badly, who knows and would automatically take my napping nirvana away also, as would a car theif. So either way really, good things come to an end, albeit temporarily of course. Maybe, maybe not, how long may it take to gain my driving license back after I've surrendered it? Surrendering it does help my case it's a "guilty plea" and looked on kindly by the DVLA. But why now? Why this? Don't they think I've had enough punishment yet?
Monday, 5 April 2010
More Dream Photography
It was a rainy day in the end and I was caught in a park in a heavy shower under a brolly but took shelter under some trees too. A Camera is a great thing to have around at times like this, I saw a scene from a dream that I had during the sleep part of my EEG. A dream about walking in a wood. Dream like soft focus pictures can be made with Orton.
I think I shall run a quick scan of flickr on a weekend and do a post every Sunday with dream photography.
I'm not sure if I'm alone in this, maybe not, but I can kinda hear what's going on around me when I nap. A consultant said to stay out of the sleep cycle by setting an alarm, or I'd wake up groggy, but I notice my own breathing quite often within a few minutes of starting the nap is like sleep, borderline snoring! Within a few minutes of putting my head down, yet this doesn't happen at night. I also pickup noises that are going on around me during a nap that seem to affect the scene of the dream. I'm only down for 30 minutes at most, but is it right that I should be dreaming at all?
Could it really be that one of the consultants is right about me having Narcolepsy, OMG! It's all a bit, strange, but offers great advantages to my photography eye; The camera might be my minds eye externalised?
I think I shall run a quick scan of flickr on a weekend and do a post every Sunday with dream photography.
I'm not sure if I'm alone in this, maybe not, but I can kinda hear what's going on around me when I nap. A consultant said to stay out of the sleep cycle by setting an alarm, or I'd wake up groggy, but I notice my own breathing quite often within a few minutes of starting the nap is like sleep, borderline snoring! Within a few minutes of putting my head down, yet this doesn't happen at night. I also pickup noises that are going on around me during a nap that seem to affect the scene of the dream. I'm only down for 30 minutes at most, but is it right that I should be dreaming at all?
Could it really be that one of the consultants is right about me having Narcolepsy, OMG! It's all a bit, strange, but offers great advantages to my photography eye; The camera might be my minds eye externalised?
Friday, 2 April 2010
Chapter One - What Does "tired" Mean?
This question bugged me a lot in the early days, was I just a bit tired or was I exhusted from using all the energy I had to get through the day? Why was I utterly shattered, despite getting 8 hours or more sleep? Was it because I was doing far too much, working too hard, playing too hard? Not at all, in fact around that time at work, during a restructuring process, I had very little work to actually do; I used up my remaining holiday to book a massage for myself and had a little adventure close to home, I was far from depressed, but I was bloody shattered.
Depression, Chronic Fatigue or Just "Bone Idle"
My journey began with being told I was depressed, but this just didn't seem right to me, I pushed for blood tests that weren't going to be run, and was told I just needed an iron boost and some Prozac or Seroxat to see me through. I answered a questionnaire where the only conclusion from it was going to be that I was depressed. If I wasn't depressed then, I soon would be, because of how many silly things were said to me and about me, well that's how it began.
I had very little energy after that bout of illness during that Christmas, the Summer before that, I had rode my mountain bike 100 miles up and down the canals that I'm blessed to live by. Rather than driving to my parents, a trip of about six miles, I'd happily jump on the bike and drop by my nans house on the way back. All of a sudden even looking at the bike horrified me, I'd ride it out and give up because I hadn't got the energy to do it. I couldn't have been physically unfit, I had dizzy spells and funny turns after even light exercise.
Tired is the Wrong Word
I knew that even though I wanted to go to a concert after work, I wanted to ride my bike after work, I wanted to hang out with my friends after work, I just couldn't muster up the energy. I managed to keep going at work for a while, but even that part of my life was soon being affected, within about four months after that Christmas my world was slipping horrifically out of my control. My weight was gaining! I was told I was tired because I needed to do more exercise, because I wasn't tired enough and needed to wear myself out; that excercise would be the solution to both my fatigue and weight gain, the Endorphins would rush around my body and I'd be all sorted.
Was It All In My Head? Absolutly!
Turns out Endorphins are produced by the Hypothalamus/Pituitary in the brain, which also regulates sleep and thyroid function. Well looking back on this now, if there is something wrong with that part of my brain, there aint no Endorphins coming out of it to save the day that's for sure. Something was up with my forehead too, I've never really had spots; suddenly not only had I spots, but flakey skin and this went for my hands too, I took moisturiser to work with me because my skin was becoming painful and this was before summer sunshine.
None the less, I was told I probably had Chronic Fatigue Syndrome and that more detailed blood tests were needed before we ruled in or out involvement of the Thyroid, but a basis of continuing investigations would be CFS/ME and that graded excersise mainly of swimming about 10 lengths a day and increasing this would get me on the road to recovery. So I was being asked to swim 50 lengths a week to start with and gradually increase this to what 200. If I asked you to swimm 200 lengths a week, you'd tell me where to stick it, right? I hope you would, but I agreed to do as much as I could and as I really enjoy swimming, I've managed to stick with it.
You Just Need To Stop Being Lazy!
I recall booking days off work to sleep, I collapsed into bed after work, well ontop of the bed, not even changed out of my work clothes and I'd be there for an hour or more asleep. Then I'd get up, cook some food; at that point ready meals were the fastest option, go back to bed and struggle to get up for work the next morning. It's still a mircale I've not had a car crash, though there have been some near misses. What was happening? This wan't just tired and it wasn't some of the time, it was nearly all of the time, my life was becoming a haze.
I made plans on the days I seemed full of energy, and called them off the next day because that energy wasn't there. Some days were a real struggle to get going and keep momentum. On those days too when I had managed to rev myself up, I couldn't calm myself back down on a night; Like a car with useless brakes and a sensitive accelerator. I managed to avoid energy drinks, but I did have a lust for Caffeine, yet strangely the day after I had avoided stimulation, I felt amazingly good!
Thyroids Were Never Mentioned
The next chapter will be about my diagnosis of Hypothyroidisim, TSH blood tests, ruling out Chronic Fatigue Syndrome and I'll touch more on the speculation of what could have been wrong with me; which saw questions thrown at me such as "are you on drugs", "do you wear condoms", "do you have a problem with alchol", "are you a bit down because you don't have a girlfriend and are a bit lonely right now"? HA! In fact leaving me alone is the best thing anyone could have done, but people kept prodding. I was now a mystery, I was a problem that couldn't be solved and that started to annoy people and the well versed "blame the victim" began to come out in earnest.
To Be Continued - Damm You Thyroid!
It was a stroke of luck, and being in the right place at the right time, with the right person, who spotted that my TSH level was 20 (and rising), a few months previous to that it had been a fantastic but still high, 1.9, and so the battle was on to bring this level down. I was told my thyroid was bassically on the way out, it was failing and we needed to replace the hormone it could no longer produce, later it would turn out that my own body was destroying my thyroid and that the organ is essential in keeping ALL body functions in check, great, I was slowly falling apart!
I was utterly shattered at that point and went on sick leave for 3 months, while I figured this shit out.
Depression, Chronic Fatigue or Just "Bone Idle"
My journey began with being told I was depressed, but this just didn't seem right to me, I pushed for blood tests that weren't going to be run, and was told I just needed an iron boost and some Prozac or Seroxat to see me through. I answered a questionnaire where the only conclusion from it was going to be that I was depressed. If I wasn't depressed then, I soon would be, because of how many silly things were said to me and about me, well that's how it began.
I had very little energy after that bout of illness during that Christmas, the Summer before that, I had rode my mountain bike 100 miles up and down the canals that I'm blessed to live by. Rather than driving to my parents, a trip of about six miles, I'd happily jump on the bike and drop by my nans house on the way back. All of a sudden even looking at the bike horrified me, I'd ride it out and give up because I hadn't got the energy to do it. I couldn't have been physically unfit, I had dizzy spells and funny turns after even light exercise.
Tired is the Wrong Word
I knew that even though I wanted to go to a concert after work, I wanted to ride my bike after work, I wanted to hang out with my friends after work, I just couldn't muster up the energy. I managed to keep going at work for a while, but even that part of my life was soon being affected, within about four months after that Christmas my world was slipping horrifically out of my control. My weight was gaining! I was told I was tired because I needed to do more exercise, because I wasn't tired enough and needed to wear myself out; that excercise would be the solution to both my fatigue and weight gain, the Endorphins would rush around my body and I'd be all sorted.
Was It All In My Head? Absolutly!
Turns out Endorphins are produced by the Hypothalamus/Pituitary in the brain, which also regulates sleep and thyroid function. Well looking back on this now, if there is something wrong with that part of my brain, there aint no Endorphins coming out of it to save the day that's for sure. Something was up with my forehead too, I've never really had spots; suddenly not only had I spots, but flakey skin and this went for my hands too, I took moisturiser to work with me because my skin was becoming painful and this was before summer sunshine.
None the less, I was told I probably had Chronic Fatigue Syndrome and that more detailed blood tests were needed before we ruled in or out involvement of the Thyroid, but a basis of continuing investigations would be CFS/ME and that graded excersise mainly of swimming about 10 lengths a day and increasing this would get me on the road to recovery. So I was being asked to swim 50 lengths a week to start with and gradually increase this to what 200. If I asked you to swimm 200 lengths a week, you'd tell me where to stick it, right? I hope you would, but I agreed to do as much as I could and as I really enjoy swimming, I've managed to stick with it.
You Just Need To Stop Being Lazy!
I recall booking days off work to sleep, I collapsed into bed after work, well ontop of the bed, not even changed out of my work clothes and I'd be there for an hour or more asleep. Then I'd get up, cook some food; at that point ready meals were the fastest option, go back to bed and struggle to get up for work the next morning. It's still a mircale I've not had a car crash, though there have been some near misses. What was happening? This wan't just tired and it wasn't some of the time, it was nearly all of the time, my life was becoming a haze.
I made plans on the days I seemed full of energy, and called them off the next day because that energy wasn't there. Some days were a real struggle to get going and keep momentum. On those days too when I had managed to rev myself up, I couldn't calm myself back down on a night; Like a car with useless brakes and a sensitive accelerator. I managed to avoid energy drinks, but I did have a lust for Caffeine, yet strangely the day after I had avoided stimulation, I felt amazingly good!
Thyroids Were Never Mentioned
The next chapter will be about my diagnosis of Hypothyroidisim, TSH blood tests, ruling out Chronic Fatigue Syndrome and I'll touch more on the speculation of what could have been wrong with me; which saw questions thrown at me such as "are you on drugs", "do you wear condoms", "do you have a problem with alchol", "are you a bit down because you don't have a girlfriend and are a bit lonely right now"? HA! In fact leaving me alone is the best thing anyone could have done, but people kept prodding. I was now a mystery, I was a problem that couldn't be solved and that started to annoy people and the well versed "blame the victim" began to come out in earnest.
To Be Continued - Damm You Thyroid!
It was a stroke of luck, and being in the right place at the right time, with the right person, who spotted that my TSH level was 20 (and rising), a few months previous to that it had been a fantastic but still high, 1.9, and so the battle was on to bring this level down. I was told my thyroid was bassically on the way out, it was failing and we needed to replace the hormone it could no longer produce, later it would turn out that my own body was destroying my thyroid and that the organ is essential in keeping ALL body functions in check, great, I was slowly falling apart!
I was utterly shattered at that point and went on sick leave for 3 months, while I figured this shit out.
Thursday, 1 April 2010
Daylight Savings
This weekend just gone, I'm sure you'll be aware, the clocks sprung forward. Do our body's go out of sync for a while, until we recover and get back in tune with the external clocks? In effect on Monday morning, if we normally wake at 6am we'd be waking at "our 5am". My 3pm sleep attack pretty much hit as I was driving home as opposed to when I was at work, my 12pm one came after lunch not before, which I wasn't too happy about. It threw out my ability to predict when I might have a bout of drowsiness. Grr!
Since the weekend I've had two bouts of insomnia and extreme tiredness particulary all the way through Monday and into Monday night Tuesday morning. Tuesday was very bad, I felt like I had been hit by several asteroids, and it caused a major problem in my working life, I had to take the day off, it was insane, just 2 hours sleep.
Wednesday was getting better, about 4 hours sleep, but still very rough and Thursday being today I'm getting back in sync, I had a great sleep Wednesday night, hopefully by tommorrow, Friday it'll all be back to normal again, but oh boy have I been knocked for six this week! I was fine last week. Is it the Provigil, is it the time change, did my thyroid protest in anger at the clocks moving, or is it just because I'm falling apart and out of sync with this world? Who knows, but maybe I should be more aware of loosing an hour and gaining an hour in terms of the carcadian rhythm, that or take a trip to Underland to reset my body clock too!
Since the weekend I've had two bouts of insomnia and extreme tiredness particulary all the way through Monday and into Monday night Tuesday morning. Tuesday was very bad, I felt like I had been hit by several asteroids, and it caused a major problem in my working life, I had to take the day off, it was insane, just 2 hours sleep.
Wednesday was getting better, about 4 hours sleep, but still very rough and Thursday being today I'm getting back in sync, I had a great sleep Wednesday night, hopefully by tommorrow, Friday it'll all be back to normal again, but oh boy have I been knocked for six this week! I was fine last week. Is it the Provigil, is it the time change, did my thyroid protest in anger at the clocks moving, or is it just because I'm falling apart and out of sync with this world? Who knows, but maybe I should be more aware of loosing an hour and gaining an hour in terms of the carcadian rhythm, that or take a trip to Underland to reset my body clock too!
Dreams and Photography
Vivid dreams, how can we make use of them in our everyday lives? I find photography lets me capture things that I see and sometimes feel in my dreams, colours, angles shapes and more detailed scenes too. Luckily although I dream about real world locations or locations you'd expect to be able to go to in the waking world, mostly the content is positive and non threatening. Which can't be said for some of the dreams I still remember from my childhood.
I dream of lakes or pools of warm water in softly lit caves, forests and woodlands. Vast lands, or small discreet worlds, perhaps even a living room. Sometimes my friends are there, I have conversations with them and almost lucid in nature, I know that I'm dreaming and enjoy the expereince.
But can we externalise elements of our dreams through photography, have you ever found that Narcolepsy, or a sleep disorder can have positive benefits to your creativity? Here's an example of what photoshopping allows me to create with things I see in the real world that once appeared in a dream.
I dream of lakes or pools of warm water in softly lit caves, forests and woodlands. Vast lands, or small discreet worlds, perhaps even a living room. Sometimes my friends are there, I have conversations with them and almost lucid in nature, I know that I'm dreaming and enjoy the expereince.
But can we externalise elements of our dreams through photography, have you ever found that Narcolepsy, or a sleep disorder can have positive benefits to your creativity? Here's an example of what photoshopping allows me to create with things I see in the real world that once appeared in a dream.
White Rabbits
It's the 1st of a month with the letter "R" in it. Usually around these parts you hear folks suddenly proclaim "White Rabbits" as they've forgotten to say it upon wakening. Is this some kind of Tourrets? Maybe, but more often than not it's a superstition. Some of you may know it as "Pinch, punch, first of the month", it's said to bring good luck for the whole month! Although suffice to say, the success rate of this is pretty poor and at best it's a simple muse, something to bring a bit of cheer to the day of a new month.
From Wikipedia:
"The exact origin of the superstition is unknown, though it has appeared in print at least as early as 1954 in Bromley, Kent, England, where it is most commonly said to have originated, though some reports place its origins even earlier, into the 1800s."
From Wikipedia:
"The exact origin of the superstition is unknown, though it has appeared in print at least as early as 1954 in Bromley, Kent, England, where it is most commonly said to have originated, though some reports place its origins even earlier, into the 1800s."
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