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Dreaming Awake: Diary of a Narcoleptic

by Liesel
(Dunedin, New Zealand)



I got diagnosed with cataplexy when I was 14. My mother didn't believe me when I told her I kept falling over whenever I laughed, until she was with me one day when I started laughing and spontaneously collapsed to the ground in the middle of a busy car-park.

Initially the doctor wondered if it was my heart, but then cataplexy was suggested and tests proved this to be correct. My neurologist then told me that I would probably develop narcolepsy symptoms as I got a bit older - which I did - at about the age of 19.

Although the laughing and falling over was quite inconvenient - and sometimes painful - it was actually quite novel as a teenager and I often found my "collapsing" as funny as my friends did. Even when I began to notice I couldn't keep awake in my first year of university, I always just treated it as mildly annoying, but nothing that was really impacting on my life.

As a university student I kept erratic hours, going to bed whenever I wanted and often staying out late. I think in a lot of ways I put my intense sleepiness down to my lifestyle, and I really refused to recognise there was anything "wrong" with me. I knew I had narcolepsy, but I was denying that it was really affecting me - although clearly it was.

I remember my friends saying how weird it was watching me fall asleep in class, my pen still in my hand - sometimes still writing something as I fell asleep - and then only to jerk awake when the lecturer would make a particularly significant point. My friends said I would wake up and try to jot it down before the whole cycle repeated itself with my pen drifting off the page as I fell asleep again.

This went on for the five years. I was studying without me paying too much attention to the fact I had narcolepsy. I was still falling over when I laughed, and I had noticed that I also fell over whenever I got angry or surprised by something. The cataplexy also affected me in strange ways such as when the phone rang, I would not be able to answer it without falling over. The same thing would happen sometimes when I tried to cross the road. I have tried to understand why this happens, and the best I can do, is describe it as the 'pressure' of answering the phone before the person hangs up, or the 'pressure' of crossing the road before a car approaches.

I graduated from university, became a teacher and moved to a small town where it was essential I was able to drive. I was still living as though narcolepsy wasn't real, even though I had to organise with the school I was working at to make all kinds of allowances for my sleeping in the workplace. I also wasn't able to supervise things such as silent reading for my classes, as the lack of stimulus and silence would almost certainly mean I fell asleep at the front of the class!

However, as much as I denied there was any kind of problem, I was forced to face up to the fact I really wasn't coping with my job and dealing with the impact narcolepsy was having on my life. I was driving home from school one lunchtime, and ended up falling asleep and having a car accident. As a result of this I lost my drivers license and ended up resigning from my job at the end of the year.

The next three years I had to start facing up to how narcolepsy was affecting me. I saw a neurologist who tried to convince me to go on medication, but I was adamant (as I had always been) that I didn't want to be medicated and would rather experiment with other ways of controlling my sleeping.

I started getting fit and changed my diet. I noticed how much sweet food influenced my sleeping. I could almost predict that within 20 minutes of eating chocolate I would fall asleep. However, I also realised that when I was feeling particularly sleepy, in an effort to keep awake I would often reach for sugar. This was a cycle that was really difficult to break as I craved sugar in those moments where I was sleepy and I was often too sleepy at that point to make good decisions about what I should or shouldn't eat and sugar would almost always send me to sleep.

I also began to realise how important it was to have people around me who could help identify when I was sleepy. I think I have three levels of 'awake' which I operate on. The first one is the most awake - able to concentrate, read, converse, watch television, travel in the car/bus without falling asleep and being aware of everything. The second level is a little more hazy. I often feel like there is a fog around me. Things aren't quite clear, I am more likely to look sleepy and I might drop off for a second or two. This level is the one where I need to take a quick nap (usually 10-20mins is enough) - put my head down on a desk, lie down on the couch or even the floor - and then I will be refreshed when I wake up and feel like I'm back to Level 1. The third level is when I am sleep-living. It's like I'm asleep but I'm still doing things, trying to talk, desperately trying to stay awake but snapping in and out of sleep. This level I really need to stop and sleep - and might need a longer sleep in order to recover to Level 1. So if I have people around me who are aware of my level, it's really helpful for me when they tell me to take a quick nap, as I am usually not able to make this decision as all my energy is going into the fight to stay awake! It's also as if I need permission to take a quick nap because most of the time I'm not only fighting my own self - not wanting to fall asleep - but I'm fighting a culture where I am told it's not appropriate to fall asleep anywhere other than in your own bed, at night.

I didn't use any form of medication for my narcolepsy until I moved to Korea. I spent a year teaching there without using medication, and it was clear again, that I wasn't coping with this. I had decided I loved living in Korea and wanted to be able to continue working there but realistically the only way I could do this was with medication. I was prescribed Modafinil (also known as Provigil) and began taking medication for narcolepsy. The good thing about Provigil is that it is not an amphetamine based medication. This means I can take it on a "needs-by" basis and there is no 'high' and then a 'low' as you come off the medication. It doesn't always stop me from falling asleep, but it definitely helps me stay awake.

The cost of Provigil in NZ (where I'm from) was astronomical - for a three month supply it was costing almost $1000 - so the other positive thing about Korea was that Provigil was much cheaper (about $30 for the same supply).

I lived in Korea for eight years and taught English for almost all of that time. My lifestyle in Korea was really conducive to having narcolepsy and probably helped me start to own the fact I had a condition which needed careful attention and management if I was to have good quality of life. Korean culture is much more receptive to public sleeping - on the subway, train etc. I joined the majority of people commuting and catching up on some sleep. It was a really good feeling not standing out as someone "weird" who fell asleep in public all the time!

My job also allowed me to manage my sleeping as I worked in a university where my teaching hours were spread sporadically through the day and there was always time for me to have a nap in my office between classes.

I am now back in NZ and have just completed my MA in Peace and Conflict Studies. It was a real struggle to stay awake returning to an intense academic environment where my concentration levels were under a lot of pressure in my demands to stay awake! However I am very proud of the fact I managed this.

Some of the key things I have learned about my condition:

1. Routine is really important. It's not so much about how much sleep I get (although about 8-9 hours a night is good) but it's about maintaining a regular bedtime and wake up time. If this stays in routine, I am much less likely to be sleepy during the day.

2. Diet and exercise. Staying fit and being healthy definitely makes a difference. Being mindful of your overall health means your body has something in reserve to manage situations where you don't have as much control over the routine or being able to have a nap.

3. Stay away from sugar! I am not very good at this, but I know that it only makes me sleepier even if in the short term it appears to be what my body wants.

4. Keep moving. Avoid sitting around when you don't have to. When I sit down - especially when I first get home after work - I am likely to fall asleep. If I keep moving I can keep my 'sleep battery' charged through staying active.

I am now 38 and have been on medication for about 10 years. I still try not to use the drugs if I can help it! I am also now much more accepting of this condition which really can interrupt your life. However, I choose to see it as a positive. Most of the time I try to go with it, rather than against it. I can sleep anywhere, anytime. I get to dream the most amazing dreams - and lots of them! I get to walk everywhere - which means I'm not only taking life at a more relaxed pace, but I'm also not adding more unnecessary car-fumes into the mix. I'm sure I look younger as a result of all this REM sleep I'm getting and if you are in a particularly tedious situation, you always have an excuse for nodding off...

I guess what I want to say in closing, is that narcolepsy is a frustrating thing to live with but like so many things, if you can accept it as a part of you, find ways to make it more manageable and enjoy any of the positives which come with narcolepsy then your quality of life will be far better than fighting the condition or pretending you don't really have to deal with it.

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