Why am I Tired All the Time but Still Don’t Sleep Well?

Nov 12, 2019

This seems like one of the classic ironies of chronic illness.  Chronic fatigue, it seems, does not lead to being a champion sleeper.  There are many factors – known and unknown, that contribute to our sleep.  While some of the things that are not under my control have to do with my constellation of illnesses and autonomic dysregulation, there are things I have control over, namely my sleep hygiene and I work to sway those factors in my favor.  Are you familiar with all the things you can be doing to help yourself on the sleep front?

Your room: is it dark, quiet, cool and comfortable?  Man, as I read that I saw how much assumption of privilege is packed into that short sentence!  It takes money to have all of those things (okay, your bedroom can be plenty cool in most parts of North America during the WINTER.  But, yes, while money cannot buy our health, having a benchmark level of wealth can buy some things that make a big difference in our safety, general health, well-being, and comfort.  A mattress that is comfortable and changed every 5-10 years is one of those things, breathable sheets another, as is access to safe, quiet sleeping quarters.  If you have control over some or all of these factors, they can make a difference.

I once saw a sleep specialist who said, “Your bed should be for sex and sleeping only.”  This has stuck with me.  I do think as folks with chronic illness it is very easy for these bed lines to get blurry to the point of no distinction.  For many of us, so MUCH of our life happens in bed; refreshing sleep and sex are sometimes the only things that aren’t happening there.  Seriously, it is easy to have the TV in your room, have your kids and spouses come talk to you there, move the command center of your life to the place you are likely most comfortable – the bed.  However, it does stand to reason that sleeping there perhaps becomes more difficult.  When we’re surrounded by all that hubbub, or that place does not represent restfulness, where does that leave us?  For me, that leaves the TV in another room and me trying to have those conversations, arguments, meals, elsewhere.  I’m not always well enough to leave the bed, but if I’m not, the only entertainment I have are my own thoughts, a book, podcast, or audiobook.  I don’t believe this is a perfect solution, but I do think it’s sleep conducive.

The other thing that specialists seem agree on is that having a sleep schedule is helpful.  My days are irregular and unpredictable.  I rarely wake at the same time, my appointments aren’t the same from one week to the next, the way I’ll feel varies widely and therefore the amount I try to do flexes with ability.  There is little that’s reliable about my days.  However, I work to always be in bed by the same time every night.  If I’m already in bed before that because I felt especially tired or crummy, so be it, but if not, I try to be in bed by a cut off time.  That way, even if my waking time changes, my body can count on when we’ll be going to bed.

If you read this blog with any regularity, you know that I have diffulty quieting my mind.  This trouble is magnified at bedtime when my mind seems to hijack my sleep plans.  Some things I do to counteract this problem are: in addition to my bed schedule, I stick to my meds schedule.  Taking my evening medications at the same time each night helps them set about to do their work (pain relief among those pills) so that I am in the best possible state for relaxation.  I have a white noise machine to help even out the sounds of my house.  As someone who is easily distracted (and my wife has tennitis) white noise is a helpful sleep-aid.  And finally, I often listen to guided relaxation or sleep meditation as I’m laying down.

I have never been one of those people who can fall asleep within minutes of laying down (what kind of witchcraft do they practice?!)  It usually takes me more than an hour to get to sleep no matter how tired I am as I go to bed.  Regardless, I respect the process, spray my lavender, and close my eyes in good faith that I WILL get some sleep tonight.  There are nights when I don’t, when the gremlins, the pain, or the swirl of my mind has other plans.  These dark nights feel longer than the sum of their hours.  While I expect unrefreshing sleep is my lot in life, I will continue looking for more solutions and ways to gain more zzzzs here and there.  What’s working for you these days?  Any revolutions in your sleep solutions?  Share your best tips so we can try them out tonight.

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