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.

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.

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.

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.

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.

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.