Well, I've had the weekend to recover from not sleeping well during the overnight tests, my sleep paterns still aren't back to normal. The two night EEG was horrible, with all those wires superglued onto my skull, the glue felt like deep heat and the wires kept tugging my head everytime I moved.
The staff were lovely and worked in shifts, we were always well fed and warm, I shared a room with another person undergoing sleep tests. In general comfortable enough but very un-nerving as CCTV cameras watched us for the entire time and I could hear the whiring of the camera as I moved around from bed to loo.
I've managed to get all the superglue out of my hair now, but am refraining from getting a hair cut as I have to go through it all again this Thursday for my Multiple Sleep Latency Test (MSLT).
On returning home after these tests I had a letter from the DVLA saying that they had come to a decision about my driving license and that it is to be revoked. I had three days notice and have since taxed the car off road! For the time being it hasn't really affected me to know that I can't drive at all for the foreseeable future, because I'm so pre-occupied with getting the diagnosis and evidence together for the Employment and Support Tribunal.
With the cold weather we are having in the UK at the moment, bed seems to be the best place to be under cover in the warm and with flickring candles and christmas tree lights to keep my spirits up. It's getting closer to being real this whole Narcolepsy thing.
Monday, 29 November 2010
Monday, 22 November 2010
Real Sleep Tests!
Hurrah! This week, finally I'm getting some proper overnight full on video camera, wired into the grid sleep studies done which mean living in a hospital for a few days.
My journey to wonderland is quite horrific but I guess typical of the frustrating expereince of being seen by doctors who don't know what they are dealing with (they openly admit this) and a disorder that isn't showing the thing most often thought of in the minds eye; collasping when laughing. I don't do that and that's why it's taking over two years to answer the question - "what's wrong with you".
12 doctors, who I won't name obviously have looked at it and shrugged, a couple have said "you have Narcolepsy, we just don't have the evidence to say you do". It's so frustrating, particulary when nobody who you are looking to for support, believes you, or won;t help you because you can't explain or they can't understand.
So mid-week, this week I'm in for Polysomn tests the works and a week after that I'm in for a Multiple Sleep Latency Test and a week after that I get the results a week before my 30th birthday, nice!
Fingers crossed, it's not obvious that I have Narcolepsy and Hypersomnia will do for the time being, I JUST need a word, one word to make other people accept that they SHOULD help me that I can't do this on my own and I do need their understanding. I could also do with some back up, because nobody really believes I have Narcolepsy without Cataplexy. Maybe 2011 will change all that, I'll have a word that people can go home google and come back to me and say they have verified my condition for themselves and believe it exists.
My journey to wonderland is quite horrific but I guess typical of the frustrating expereince of being seen by doctors who don't know what they are dealing with (they openly admit this) and a disorder that isn't showing the thing most often thought of in the minds eye; collasping when laughing. I don't do that and that's why it's taking over two years to answer the question - "what's wrong with you".
12 doctors, who I won't name obviously have looked at it and shrugged, a couple have said "you have Narcolepsy, we just don't have the evidence to say you do". It's so frustrating, particulary when nobody who you are looking to for support, believes you, or won;t help you because you can't explain or they can't understand.
So mid-week, this week I'm in for Polysomn tests the works and a week after that I'm in for a Multiple Sleep Latency Test and a week after that I get the results a week before my 30th birthday, nice!
Fingers crossed, it's not obvious that I have Narcolepsy and Hypersomnia will do for the time being, I JUST need a word, one word to make other people accept that they SHOULD help me that I can't do this on my own and I do need their understanding. I could also do with some back up, because nobody really believes I have Narcolepsy without Cataplexy. Maybe 2011 will change all that, I'll have a word that people can go home google and come back to me and say they have verified my condition for themselves and believe it exists.
Learning Meditation
This past week or so, I've had wonderfull guidance on how to meditate, which wasn't planned at all, turned out rather well and could be a powerful way of managing my "mystery illness" (Narcolepsy). I went into it not knowing what to expect, perhaps the odd tip or two but I wasn't expecting to be meditating.
Turns out Narcoleptics may have an innate ability to enter a trance state easily. Who'd have thought it eh?
In the local area there are free taster courses being offered at the moment, in the vein of brick laying, learning how to eBay and a few that caught my attention; Overcoming Insomnia and Managing Anxiety. Being that I'm having ongoing battles with both these things, I can't sleep and am falling asleep in the day uncontrolled and the medication increases anxiety levels. Perfect. Really helped me find another way to manage my, for want of a better description; Narcolepsy (diagnosis still pending).
Our tutor was amazingly calming and in a very calming and soothing room we were taken on guided meditation, through visualisations and suggestions of relaxing scenes. I had tried guided meditation before and use a hypnosis iPhone app occasionally so I found myself taking to this well.
We were taught how mediation is a state inbetween sleep, just before sleep. Well ok this must be second nature for a Narcoleptic, the hypnogogic state. I found my hypnic jerks occured stronger, they aren't painful at all. I also found that I was able to see the blue colour, flasehs of blue balls and add a LOT of texture and context to the visualiations. My dreams are mostly postitve and have been set in places such as a beach and a safe coloured cave so I was able to be taken back to those places through this guided mediation.
What I'm Hoping This Will Do For Me
Not only through breathing do I hope to be a bit calmer and take the edge of emotions that do make me sleepy (disclaimer; I haven't been diagnosed Narcoleptic yet), I hope that through guided visualisations I can have my REM sleep in a controlled scheeduled way.
I'm hoping that setting time aside each day to control what my "sleep disorder" wants to do randomly may in fact help limit that horrible and sudden "sleep now" feeling. I'm hoping that I can hypnotise myself for want of a better way of putting it at night so I can be rested properly and be less tired the next day. So far modern medicine hasn't been able to help, but I feel somewhere inbetween the two worlds, there's something that can help me make peace with my Narcolepsy let's say and move on, go back to where I started before my brain started shutting down into sleep in the day.
Turns out Narcoleptics may have an innate ability to enter a trance state easily. Who'd have thought it eh?
In the local area there are free taster courses being offered at the moment, in the vein of brick laying, learning how to eBay and a few that caught my attention; Overcoming Insomnia and Managing Anxiety. Being that I'm having ongoing battles with both these things, I can't sleep and am falling asleep in the day uncontrolled and the medication increases anxiety levels. Perfect. Really helped me find another way to manage my, for want of a better description; Narcolepsy (diagnosis still pending).
Our tutor was amazingly calming and in a very calming and soothing room we were taken on guided meditation, through visualisations and suggestions of relaxing scenes. I had tried guided meditation before and use a hypnosis iPhone app occasionally so I found myself taking to this well.
We were taught how mediation is a state inbetween sleep, just before sleep. Well ok this must be second nature for a Narcoleptic, the hypnogogic state. I found my hypnic jerks occured stronger, they aren't painful at all. I also found that I was able to see the blue colour, flasehs of blue balls and add a LOT of texture and context to the visualiations. My dreams are mostly postitve and have been set in places such as a beach and a safe coloured cave so I was able to be taken back to those places through this guided mediation.
What I'm Hoping This Will Do For Me
Not only through breathing do I hope to be a bit calmer and take the edge of emotions that do make me sleepy (disclaimer; I haven't been diagnosed Narcoleptic yet), I hope that through guided visualisations I can have my REM sleep in a controlled scheeduled way.
I'm hoping that setting time aside each day to control what my "sleep disorder" wants to do randomly may in fact help limit that horrible and sudden "sleep now" feeling. I'm hoping that I can hypnotise myself for want of a better way of putting it at night so I can be rested properly and be less tired the next day. So far modern medicine hasn't been able to help, but I feel somewhere inbetween the two worlds, there's something that can help me make peace with my Narcolepsy let's say and move on, go back to where I started before my brain started shutting down into sleep in the day.
Wednesday, 4 August 2010
Inception and Layered Dreams
I went to see the movie, Inception this past week and I was very impressed, not only with the effects but also the plot surrounding dreams.
Here's a short summary from IMDB.com:
"Dom Cobb is a skilled thief, the absolute best in the dangerous art of extraction, stealing valuable secrets from deep within the subconscious during the dream state, when the mind is at its most vulnerable. Cobb's rare ability has made him a coveted player in this treacherous new world of corporate espionage"
I found the movie to be very interesting in terms of dream construction and lucid dreaming and got me thinking about how vivid and real my own dreams can feel. Real places but with seemingly unreal attributes. Then the whole thing about layered dreams and having an object you can check to see if you are dreaming or not, blew my mind. It was thrilling watch!
If you can get to see it, it's worth the watch, a bit slow to get going but there are elements I think Narcoleptics will enjoy.
Here's a short summary from IMDB.com:
"Dom Cobb is a skilled thief, the absolute best in the dangerous art of extraction, stealing valuable secrets from deep within the subconscious during the dream state, when the mind is at its most vulnerable. Cobb's rare ability has made him a coveted player in this treacherous new world of corporate espionage"
I found the movie to be very interesting in terms of dream construction and lucid dreaming and got me thinking about how vivid and real my own dreams can feel. Real places but with seemingly unreal attributes. Then the whole thing about layered dreams and having an object you can check to see if you are dreaming or not, blew my mind. It was thrilling watch!
If you can get to see it, it's worth the watch, a bit slow to get going but there are elements I think Narcoleptics will enjoy.
Tuesday, 27 July 2010
Book Recommend - Tired But Wired
I picked up a book a few weeks back that is proving to be really useful in understanding what sleep is and what things can be done to improve it. Now Narcoelpsy isn't like Insomnia, it is but it isn't, what it is, is incurable. Basscially anything that can actually improve the symptoms is better than nothing.
It's called "Tired But Wired", and it contains a toolkit which includes how to wind down, how to relearn the art of falling asleep. What it however skips over is Narcolepsy. It's not a book for Narcolpetics, but it may offer us some insight into the things we can do to help ourselves manage particulary at night with sleep hygiene.
The chapter on power napping and pre sleep yoga, I found to be most useful.
It's called "Tired But Wired", and it contains a toolkit which includes how to wind down, how to relearn the art of falling asleep. What it however skips over is Narcolepsy. It's not a book for Narcolpetics, but it may offer us some insight into the things we can do to help ourselves manage particulary at night with sleep hygiene.
The chapter on power napping and pre sleep yoga, I found to be most useful.
Body Clock Is Screwed!
It has taken a while to adjust to not having to wake up to attend a 9am start for work, my body is still waking at 6am and I think I managed to figure out why. It's not just that I was having to get up for work at 6am (and thus ending up shattered 3 hours later upon arriving at 9am), I was also taking my thyroid medication around that time.
Levothyroxine works best on an empty stomach, so it was always advised to take it as early as possible, before breakfast. Since I've refused my thyroid this and instead moved it to 10am I'm finding that I'm sleeping better through the night. Though I'm still finding that I can't sleep before 1am and would benefit I think from a sedative. But certainly sorting out this 6am wake up nonsense has helped me get more than 4 hours sleep a night.
I'm planning a big post on Caffeine because I believe that's the stimulent that I'm relying on to manage my condition and what it does mean is that at night it won't let me slow down enough to sleep. But I can't really win, without Caffeine, I bearely make it through the day and with too much I overshoot and the next day is EVEN worse leading to a fatigue cycle and dependance issue.
My EDS attacks are moving around the "envrionmental" clock too 1pm instead of 11am, 4pm instead of 3pm, and it varies day to day. So it's becoming a lot harder for me to predict and thus plan my day around when I'll be having my sleep attacks. At least when I was in work I knew that a rigid routine allowed me to contain my naps to strict times. If I want a sleep attack at 3pm instead of 4pm (and it's gonna happen so I want it to happen at a convienient time), I'm going to back to backtrack and choose to force myself to wake up at 9am (my new 6am) so it's all back in line with a nice predictable 3 hour cycle.
Self employment I feel is going to offer significant challenges to regulating my condition, my schedule will naturally become more anti-social, but in the same breath it will also remove the ill judgement that was placed upon me due to my condition by the demands of presenteeism. However if I'm having a really bad week, I risk not being able to work. As long as I can keep a roof over my head, that's my biggest worry from loosing my job due to what is obviously a sleep disorder called Narcolepsy.
Levothyroxine works best on an empty stomach, so it was always advised to take it as early as possible, before breakfast. Since I've refused my thyroid this and instead moved it to 10am I'm finding that I'm sleeping better through the night. Though I'm still finding that I can't sleep before 1am and would benefit I think from a sedative. But certainly sorting out this 6am wake up nonsense has helped me get more than 4 hours sleep a night.
I'm planning a big post on Caffeine because I believe that's the stimulent that I'm relying on to manage my condition and what it does mean is that at night it won't let me slow down enough to sleep. But I can't really win, without Caffeine, I bearely make it through the day and with too much I overshoot and the next day is EVEN worse leading to a fatigue cycle and dependance issue.
My EDS attacks are moving around the "envrionmental" clock too 1pm instead of 11am, 4pm instead of 3pm, and it varies day to day. So it's becoming a lot harder for me to predict and thus plan my day around when I'll be having my sleep attacks. At least when I was in work I knew that a rigid routine allowed me to contain my naps to strict times. If I want a sleep attack at 3pm instead of 4pm (and it's gonna happen so I want it to happen at a convienient time), I'm going to back to backtrack and choose to force myself to wake up at 9am (my new 6am) so it's all back in line with a nice predictable 3 hour cycle.
Self employment I feel is going to offer significant challenges to regulating my condition, my schedule will naturally become more anti-social, but in the same breath it will also remove the ill judgement that was placed upon me due to my condition by the demands of presenteeism. However if I'm having a really bad week, I risk not being able to work. As long as I can keep a roof over my head, that's my biggest worry from loosing my job due to what is obviously a sleep disorder called Narcolepsy.
Wednesday, 14 July 2010
Initial Introduction at The Barberry
So yesterday I had an introduction meeting at a very nice specialist hospital, which deals with mental health mainly, who are going to be looking at my sleep. In fact I secretly wanted to steal the artwork from the corridoors!
The appointment was at 11:30am which is a time that I know I'll be experiencing daytime sleepiness issues. True to form I had to be woken up in the waiting room to go through! Feeling fuzzy and not all awake I managed to get through it but wondered if I should have someone there to speak for me if the appointments fall around 12 or 3pm.
I did my third Epworth Sleepiness Scale and came out at 23, which means severly sleepy, there was yet another test for depression of which I couldn't calculate the score oweing to the sleepiness and another question sheet that I can't remember. I gave the background to the situation, explained that I had lost my job and was really having a tough time with this now and the consultant did everything she could to reassure me that I was now in the right place. I haven't up to now been seeing the right people, despite protesting and making a big deal of it, which I think you have to do to make progress.
The first thing I'll be doing will be wearing a watch that will monitor my brain waves throughout the day, and this may confirm the naps that I have every few hours. I don't know what to expect at this stage but it sounds more sleep related than anything I've done over the past 18 months, so that fills me with hope.
The appointment was at 11:30am which is a time that I know I'll be experiencing daytime sleepiness issues. True to form I had to be woken up in the waiting room to go through! Feeling fuzzy and not all awake I managed to get through it but wondered if I should have someone there to speak for me if the appointments fall around 12 or 3pm.
I did my third Epworth Sleepiness Scale and came out at 23, which means severly sleepy, there was yet another test for depression of which I couldn't calculate the score oweing to the sleepiness and another question sheet that I can't remember. I gave the background to the situation, explained that I had lost my job and was really having a tough time with this now and the consultant did everything she could to reassure me that I was now in the right place. I haven't up to now been seeing the right people, despite protesting and making a big deal of it, which I think you have to do to make progress.
The first thing I'll be doing will be wearing a watch that will monitor my brain waves throughout the day, and this may confirm the naps that I have every few hours. I don't know what to expect at this stage but it sounds more sleep related than anything I've done over the past 18 months, so that fills me with hope.
Monday, 12 July 2010
Dream Photography
I was in a winter garden this weekend with a friend and we saw this water feature, which I thought was a great example of dream photography. The kind of thing you'd see in your dream. I think when you wake, you recall details of dreams in close ups, rather than the bigger picture and it comes back to you gradually.
I must say my dreams are positive ones, the latest that I can recall vividly felt really nice. I was on a coast, it felt like a holiday, a typical one for me in that I was alone and not lonely at all, but more at peace than if I was there with someone else. Surrounded by strangers and beside a wind farm on the edge of the sea, we began swimming in thick foam. Not sea foam, but meters of foam that had poured out of these wind turbines. The foam was more like a blanket and the strangers were more like a free love thing. How very odd!
For all the trouble we get, this must be the positive aspect of Narcolepsy. My eye for photography can be very Narcoleptic at times, vivid details in close up, much of the world cropped out. I guess EDS is like that too, a sort of blury tunnel vision, with a stinking headache.
Photography recharges me, it gives me energy.
I must say my dreams are positive ones, the latest that I can recall vividly felt really nice. I was on a coast, it felt like a holiday, a typical one for me in that I was alone and not lonely at all, but more at peace than if I was there with someone else. Surrounded by strangers and beside a wind farm on the edge of the sea, we began swimming in thick foam. Not sea foam, but meters of foam that had poured out of these wind turbines. The foam was more like a blanket and the strangers were more like a free love thing. How very odd!
For all the trouble we get, this must be the positive aspect of Narcolepsy. My eye for photography can be very Narcoleptic at times, vivid details in close up, much of the world cropped out. I guess EDS is like that too, a sort of blury tunnel vision, with a stinking headache.
Photography recharges me, it gives me energy.
Dream Pop - Norway by Beach House
I heard this song on the radio today (6Music) and love the spacey feeling to it, the way it feels as akward as my day feels at times with Excessive Daytime Sleepiness. I love how it soothes and matches my blurghness factor and that the title is a place that facinates me.
"Norway" by Beach House.
As a baseline comparison this dream pop band sound a bit like The Flaming Lips. Their myspace.
"Norway" by Beach House.
As a baseline comparison this dream pop band sound a bit like The Flaming Lips. Their myspace.
Lost Another Job, YAY!
I'm aware that there hasn't been an update here for a while, there are good reasons for this. The biggest one being that I've lost my job and have had to scramble into action for a soft landing. This shouldn't come as a suprise though as employment is hard to keep once these symptoms kick in.
The worst thing I think is people can't get their head around it. Why am I so tired? Well it could be because I put a lot of effort in to my work and right now I feel tottaly exhuasted AND discarded as a toy that doesn't work because it needs new batteries. Always remember it's not a weakness to ask for help, it's a sign of self respect, but it really is poor when you can't help someone, who really needs it, particulary when it's so hard to say no and very easy to have said yes.
I'm trying the third way to stay above water; freelancing! Hoping this will give me the flexibility and outwright privacy I wasn't getting at work to cope with this condition. Doing the creative work that I do, means I don't have to be in certain environments to be successful. Homeworking was always a key part of my recovery (and a viable option for my type of work) and as that wasn't being offered, I couldn't stay no matter how much I wanted to carry on, I just wasn't being allowed to stay. So screw it, don't need it, I can do FAR better and I am :)
I'm not angry with Narcolpesy, I'm dead angry with the people who refused to adjust to it. It's not the first time, it won't be the last, but I might get diagnosed this time and have a name for it so people CAN understand, but I don't think people will. I just wish people would understand that letting me be is the best way. The "oh you don't look ill" comment speaks for itself really, I need not point out the ignroance here.
So what's next?
Anything and everything! This week I go to a proper sleep clinic to see proper experts and it has been a hard struggle to even get this far, to have someone suggest I have Narcolepsy is a huge leap forward. I've had to break down in tears to even get people to take it seriously. So once again my sadness isn't with Excessive Daytime Sleepiness, it's with the people who won't help me because they can't walk in my shoes for one sodding second and when they do, they think is hould cope fine because they get three nights of bad sleep and don't realise that's how I function all the frickin' time and there's no escape! Grrrrrr.
The worst thing I think is people can't get their head around it. Why am I so tired? Well it could be because I put a lot of effort in to my work and right now I feel tottaly exhuasted AND discarded as a toy that doesn't work because it needs new batteries. Always remember it's not a weakness to ask for help, it's a sign of self respect, but it really is poor when you can't help someone, who really needs it, particulary when it's so hard to say no and very easy to have said yes.
I'm trying the third way to stay above water; freelancing! Hoping this will give me the flexibility and outwright privacy I wasn't getting at work to cope with this condition. Doing the creative work that I do, means I don't have to be in certain environments to be successful. Homeworking was always a key part of my recovery (and a viable option for my type of work) and as that wasn't being offered, I couldn't stay no matter how much I wanted to carry on, I just wasn't being allowed to stay. So screw it, don't need it, I can do FAR better and I am :)
I'm not angry with Narcolpesy, I'm dead angry with the people who refused to adjust to it. It's not the first time, it won't be the last, but I might get diagnosed this time and have a name for it so people CAN understand, but I don't think people will. I just wish people would understand that letting me be is the best way. The "oh you don't look ill" comment speaks for itself really, I need not point out the ignroance here.
So what's next?
Anything and everything! This week I go to a proper sleep clinic to see proper experts and it has been a hard struggle to even get this far, to have someone suggest I have Narcolepsy is a huge leap forward. I've had to break down in tears to even get people to take it seriously. So once again my sadness isn't with Excessive Daytime Sleepiness, it's with the people who won't help me because they can't walk in my shoes for one sodding second and when they do, they think is hould cope fine because they get three nights of bad sleep and don't realise that's how I function all the frickin' time and there's no escape! Grrrrrr.
Friday, 16 April 2010
You "probably" have Narcolepsy, but no diagnosis?
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.
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.
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."
Tuesday, 30 March 2010
Preface - Welcome to Wonderland
Welcome to Wonderland, sometimes I pop in to escape the maddening world I normally live in! Here in our dreams we can be whatever we want to be, walk through a forest barefoot in autumn, feeling the crunchyness of the leaves underfoot? Sure you got it, we can do it all and more, even see what spring is like on Jupiter and Mars! Living with a sleep disorder is hard. I'm on a journey to find out if I have Hypersomnia or Narcolepsy with my Hypothyroidisim and this is a record of that journey.
When thinking about my expereinces so far, it came to me a few months in; This is a bit like Alice in Wonderland, a mad world that only makes sense to me and people like me (maybe you). Then we wake up from our daytime nap, different somehow, refreshed and restored, our minds are indeed a land of Wonder! So buckle up, it's a bumpy ride down this rabbit hole!
Lisa Mitchell - Alice (uploaded by MissEvaChannel)
When thinking about my expereinces so far, it came to me a few months in; This is a bit like Alice in Wonderland, a mad world that only makes sense to me and people like me (maybe you). Then we wake up from our daytime nap, different somehow, refreshed and restored, our minds are indeed a land of Wonder! So buckle up, it's a bumpy ride down this rabbit hole!
Lisa Mitchell - Alice (uploaded by MissEvaChannel)
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