I focus on my sleep because that is where my RLS and PLMD (obviously the latter) really cause the most problems. Yes, the pain and discomfort I experience is challenging enough, but I have been able to manage and deal with that more than the sleep problems.
For a very long time – probably back to mid-high school days – I have had trouble sleeping. I have tried numerous tricks without any really working. For whatever reasons, my body can’t get comfortable. Nowadays that appears to be because of RLS and PLMD, but before six or seven years ago I had no idea why. Depression, chronic pain, adolescences, stress, you name it… I and others have thought about it being a cause. It got to the point that I no longer talked about not sleeping unless I had a really, really bad night.
To put that another way: I never get a full night of rest, so if I tell you I had a bad night sleep-wise… I probably had a horrific, nightmarish night compared to any everyday person. That’s because my “normal” night would probably be considered bad for anyone else.
It is kind of like pain tolerance. I always consider myself to have a very high tolerance for pain as well. My 1-10 scale at the doctor’s office is probably dramatically difference than someone who doesn’t normally experience pain. My wife when she was pregnant and then gave birth to our first child makes a similar comparison. Her “7” or higher ranking nowadays, would probably have been a “4” or “5” and higher six years ago.
The only major difference I know in my sleep in my teenage years was when I switched to a private, boarding preparatory school before my junior (5th Form) year. Prior to that, I was getting up between 5 and 6 every morning to do my paper route and I don’t know when I went to bed except that the 11pm news was considered pretty late as I remember it.
When things switched to a college-like schedule at school, I now didn’t have to get up until maybe 7am, but I was going to bed around midnight – at least – almost every night. I was probably just as busy with school, athletics, though I was certainly studying more, but otherwise it was just a shift in schedule that seemed to hurt me.
I don’t remember my junior year nights as much, but I vividly remember my senior year and struggling to get to sleep and then always barely getting up in time for class – let’s not even mention missing breakfast which normally get me some detention time on Sunday mornings.
Then my year between high school and college, now commonly called a gap year, I traveled with a group called Up With People. I was up even later most nights due to long days with shows and such, up just as early if not earlier especially to get to the buses to head to our next destination, and certainly more active during the day (show set-ups, community services, show rehearsals, etc., etc., etc.). I would say I slept marginally better, but it was based on pure exhaustion. I still had my rough nights lying in bed wondering when I might get to sleep.
However, over the years I have noticed a number of things about my sleep that remained constant. The interesting thing was I never put these together to realize a bigger problem:
- I always struggled to get comfortable in bed and finally fall asleep.
- I needed some kind of noise, music, or whatnot in the background when I tried to sleep. In hotels and such, just making sure the air system’s fan is on could do wonders (versus no noise at all). (Side note: growing up in downtown Chicago certainly led to plenty of outside noise, but I still wanted music to play when I was going to sleep.)
- I always wanted a breeze or fan on my face, though in more recent years a light breeze would be fine (as I noticed a more direct breeze sometimes triggered chronic sinus infections). I also noticed the “white noise” of the fan would sometimes be soothing.
- Too much light – completely annoying. It has to be dark. I can handle a little bit of light, but certainly not in my face.
- Pillows are my friend. Whether for my head, between my knees (supposedly comforting, not as much these days), or under my chest or stomach… pillows seemed to be my stress relief. However, too many pillows always got in my way when I was tossing and turning or simply repositioning myself.
- My sheets and blankets were ALWAYS off of me throughout the night. For the longest time, I thought this was because I was getting hot at night (another reason I thought I needed/wanted a fan on me). Each and every night I would wake, chilly, to find my sheets and blankets mostly, if not completely, off of me. I would pull them back on only to usually wake again with them off later in the night (sometimes constantly).
- Waking in the morning could be a brutal experience. I could sleep through alarms, fall back to sleep after hitting the snooze and be sound asleep when the alarm went off again, or even turn off the alarm with absolutely no memory of such an action. I missed or was late to more classes than I could ever count. I started showering at night to save myself time when scrambling in the morning. I got very good at starting my day without anything to eat because I never had time to grab breakfast (even though it might be my favorite meal of the day – though it’s more like brunch by the time I have it).
- I was NEVER comfortable or had a good night’s sleep in a new environment (i.e. hotel or someone’s home) or with people I didn’t know in the same room/bed. That was certainly a challenge in Up With People, though pure exhaustion certainly helped me solve that equation more times than not. Of course, this also made it a challenge when I was dating. I really don’t remember many times I spent the night at a girl’s home/apartment/dorm unless I actually felt comfortable and usually because I couldn’t sleep in whatever size bed it was (single, double, etc.) with another person.
- Little things start to frustrate me when I am trying to get to sleep. Normally, when I sleep nothing wakes me including a major thunderstorm parked on top of my roof. However when I am trying to sleep, someone else lightly snoring or the slightest sounds could drive me insane (thus another reason the fan or music was helpful – drowns those things out).
Sleep and I just don’t get along. But it is amazing how many of those above observations… were clearly indicating RLS and PLMD. In fact, I now use those items above to a) determine if I will get a good night’s sleep or b) how the night prior went.
- If I am in a new environment, I prepare myself by either taking my medication early or not getting frustrated with why I can’t fall asleep.
- If I wake constantly and find my sheets and blankets off or I get up in the morning and find the bed in complete disarray (usually with the sheets and blankets on the floor), I know the night before was especially rough.
- If little things are bugging me or I can’t get comfortable at all, I need to do something to get my brain and body to calm down or I will never get to sleep – that usually indicated I missed a dose of medicine as well.
The one great thing about the medication I took to deal with RLS and PLMD in the last six to seven years… the drowsy affects. I welcomed the fact I couldn’t keep my eyes open while watching TV. I relished in hearing I fell asleep with my glasses still on or resting on my arm. Certainly those aren’t get ways to sleep, but it meant my body had calmed down enough to let me get comfortable and drift off to sleep.
It’s just too bad those great feelings are also why I am now having to wean and taper myself off the medication and get back to a baseline. They worked too well. Here’s hoping my next medication cocktail includes something that at least let’s me get to sleep first and foremost.