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.
Subscribe to:
Posts (Atom)
