Sleep. A word that means one thing: when the nervous system is relatively inactive, eyes close, postural muscles relaxed and consciousness suspended. Yet, this word also carries with it a lot of emotion for people with chronic pain. Some of us get too much of it, some of us too little. No one I know with the condition gets just enough; for me, it’s been an evolving process. I have been diagnosed with a sleep disorder called Narcolepsy which causes excessive sleepiness and frequent daytime sleep attacks. People make fun of the condition in the media with narcoleptic’s falling asleep in funny situations like eating dinner, or mid-sentence. Unfortunately, it’s not that funny when you have it, or know someone who does. I can’t even count the number of times a sleep attack has occurred while I was driving and I’ve had to pull over and sleep in my back seat. I would awake a significant time later, completely unnerved by the situation. I would fall asleep sitting up while other people in the room were talking, needing to excuse myself to lay down in my car when I wasn’t at home. Until I started being treated for it, I would find myself always tired, never, ever, feeling refreshed; no matter how much or little I slept! It was a frustrating time in my life that lasted longer than I liked. I’m sure the people around me thought I was just being lazy…sometimes I think they still do think that. But I’ve been working on not caring what other people think (a major issue I’ve been dealing with) and I’ll be sure to touch on it in another blog post.
Anyway, for years when I would explain my excessive drowsiness it was ALWAYS blamed on the medications I was taking for my chronic pain. Every single doctor would say, well XYZ can cause drowsiness…yea, drowsiness but not SLEEP ATTACKS, or NEVER FEEL REFRESHED AND ALWAYS EXHAUSTED, right?! I’ve never been so close to feeling like I would have a nervous breakdown, honestly. Finally, after really listening to what was happening to me, my pain psychologist recommended I see a psychiatrist who specialized in sleep disorders and pain management. He immediately recognized the signs, ordered the sleep test, and within a few weeks had prescribed me with medicine that changed my life. I remember the first day taking the medicine feeling like, “Where has this been the last few years? I’ve been living my life in black and white when it could have been in color”?! I was angry no one thought of this sooner. Perhaps they did, but didn’t trust me with the intense medication, even though I’ve never had any issues with addiction or substance abuse. Luckily I never suffered from cataplexy, a symptom of narcolepsy in which there is sudden loss of muscle tone while the person is awake that leads to feelings of weakness and a loss of voluntary muscle control. I’ve been doing much better drowsiness-wise since taking the medication, however, now I often face the opposite problem.
Now I have to be careful how much medication I take and at what time so that I don’t have issues going to sleep. I have pretty good sleep hygiene and always fall asleep to a guided meditation I set up, but my hours are certainly not that of a 9-5er. I work better at night (and I always have) so I tend to get flooded with ideas around 11pm. It’s an inconvenient lifestyle to go to bed at 3am and wake up at 10am; sometimes later. Every now and then I’ll go to bed late and not wake up until 2 or 3pm, those times scare me. What my body needs is a regular sleep and wake cycle, and that is what I am determined to do for myself. Publicly sharing this struggle will hold me accountable with my commitment to stay as consistent as possible. The other reason for sharing is that I know I’m not alone. I know that plenty of other chronic pain individuals have all sorts of crazy hours. There are times when our pain is the highest at night so we can’t sleep. There are other times when certain medicines cause incredibly drowsiness during the day, so we take a nap, only to wake up later and not be able to sleep at a reasonable hour. To be honest, I haven’t figured out all the answers to my sleep disorder issues this yet, however I can promise that I’ll keep this community updated on my progress, and will post any and all information I have in the resources section.
Sending you healing vibes,