The Wanderful Life Does Not Include Wonderful Sleep: A Case of the Sleeping Curse and EDS

I feel like the Princess and the Pea–any little thing will disrupt my sleep. As a child, I could sleep through a smoke alarm and deeply like the dead for hours. As an adult, I can’t sleep if the room isn’t dark, if it’s not silent save the white noise of a fan, if I’m too long in a position. And, I’m not sleeping well in the camper. Here’s why…

1. Brightness. The camper has lit components built in that we cannot dim or shut off: Microwave clock, TV/Radio power button, and the carbon monoxide monitor. A camper proposed to be off-grid should have options to turn these off to save draw on battery, right? Logic is lost on some.

Plus we’ve had to use an electric heater and dehumidifier to combat the condensation and ice problems inside the toy trailer not meant for all seasons. See my previous post on this:

As a result, you can see perfectly at night.

Photo exaggerates brightness a bit. It’s not so neon-ish.

But, any bit of light bothers me because I don’t sleep with my eyes fully closed. I didn’t know this until an opthamologist noted my eyes were pitted from exposure to air. Since I have Ehlers Danlos Syndrome (EDS), I have lax connective tissue, and connective tissue constitutes 80% of ocular structures. I have a condition called lagophthalmos. Seems to be common amongst EDSers, if you read group threads.

I deal with the partially open eyes normally by wearing a nighttime eye goo to prevent dryness. In this camper, that’s not enough. So I resort to wearing an eye mask, a free perk for ordering my knee pillow from Rubark.

I’m ready to survive the Birdbox epidemic! ๐Ÿ˜›

But, the mask slips when I flip. I’m constantly adjusting it during the night to avoid the light. Sleep disturbance code red. And green, and blue…

2. Noise. We’ve had an ongoing conflict about the noise: I need a fan; Shane hates a fan. He hates the white noise machine. He doesn’t even like the sound of the dehumidifier, which works for me as a fan replacement.

But, last night the dehumidifier turned off. Then the silence was punctuated by the loud ringing in my ears. I have tinnitus, which is another common secondary disorder of EDS. Research indicates a link between EDS, TMJ, and tinnitus, as well as frequent ear infections (EDSers don’t heal as quickly, leading to middle ear damage). I have both TMJ (my left-side disc is permanently partially dislocated–they don’t know where it’s at actually) and frequent ear infections (you can feel the build up of scar tissue). I need white noise to block the insanity inspiring sirens in my head.

The other few nights the water faucet drove us both crazy. To thwart frozen pipes, we have to keep water flowing through the faucet. Temperatures have hovered in single and negative digits at night. But the flow isn’t constant. The variable water flow causes variable volume levels of splish splashing. Ugh! We want the sprung of spring.

Do I need to mention Shane may snore, cough, wheeze, and sing songs from his nostrils? Lol I do have earplugs for that. ๐Ÿ˜›

3. Joint Pain. I’ve not flip-flopped as much as I usually do. My right shoulder has hurt for a while, whether from sleeping on it at first (my body doesn’t quite like the memory foam of this mattress), or putting my coat or backpack on or off. My left shoulder though definitely has MRI confirmed labral and rotator cuff tears, tendonosis, and arthrosis, and I’m aggravating it by sleeping too long on my left side. If you can guess, my shoulders hurt because I have shoulder instability from EDS. The pain wakes me often.

At least my knee pillow helps my pelvic instability!

Look how happy my pillow is! ๐Ÿ™‚ It straps around my leg, and happily follows me on my flip-flopping bed journey.

As you may have noticed, EDS creates a lots of peas that disturb this princess. This is one reason EDSers end up feeling fatigued and never fully rested. Then we might experience mental fog, mood swings, irritability, and/or memory lapses. I can’t remember hardly anything and fear the onset of dementia sometimes. But lo and behold, chronic pain corrupts memory. As well as ability to deal with too many stressors. That’s why we have the Spoon Theory.

I’ve consistently woken up around the midnight hour and Witching Hour, and sometimes staying awake between the two. When I do sleep during those hours, I end up with bad dreams and feel like I’m living a second life (due to hyperactive adrenal glands and too cortisol because of EDS).

Every morning I start my day with one spoon missing. Considering this Wanderful Life involves wandering into wonder as often as I can, I have about half my spoons used.

I can’t think of anything else to help. I can’t nap because it makes me groggy. I refuse to take sleeping pills. Melatonin doesn’t work for me. Tea therapy, a cup of hot herbal sleepy time tea, is an option, but that usually only helps me fall asleep, not stay asleep. Meditation might help, except I suck at it.

Any suggestions?

For now, with lack of slumber, I lunber through this Wanderful Life as if a demon has been sitting on my chest. Probably dislocating my ribs. ๐Ÿ˜›

Clearly she has EDS.

9 thoughts on “The Wanderful Life Does Not Include Wonderful Sleep: A Case of the Sleeping Curse and EDS

  1. Thanks for sharing your story. I have never heard about not closing eyes at night โ€“ that makes so much sense โ€“ that would explain some things for me! I too experience all of these issues with sleep. Luckily, melatonin does work for me. But also regular morning light therapy, a bit of gentle body weight resistance exercise, magnesium, and bedtime antihistamine helps. Donโ€™t know if any of those might help you, too? Hoping for sweeter sleep for all of us zebras;

    Liked by 1 person

    1. How do you do light therapy? I have plenty of exercise with my hiking and physical therapy. I did bring my weights and bands–just too cramped in the 15 ft camper. I take magnesium as well, but the store in this area doesn’t have my brand. That might be contributing to current problems! Didn’t connect it. Benadryl would help for sure. Zzzzzombie zebra! Lol


  2. I live with the spoon theory also. One of the things I use for sleep at night, though it is only a couple hours at a time, is I found some good you tube hypnotism videos for sleep. Give those a whirl, maybe those will help you.

    Liked by 1 person

    1. I’m not sure I’d know what would constitute as good for hypnotism. I always wondered if it’s even possible to work on me! Lol If you have a favorite, please share!

      Also, may you have plenty spoons. โค


  3. Weed. ๐Ÿ™‚ Itโ€™s all-natural (itโ€™s a WEED!), non-addictive, and it WORKS. Pretty sure Shane could probably find some for you if you ever wanted to try it. ๐Ÿ˜‰ Itโ€™s not drugs. Itโ€™s a plant! Every time you inhale oregano or garlic โ€ฆ itโ€™s the same damn thing. Youโ€™ll sleep like a baby (well, a good baby that sleeps well, hahahah), have no hangover, and may even have joint pain relief.

    Liked by 1 person

    1. Well, if it came in pill form and didn’t have any brain altering I’d consider it. But I’ve heard from others with EDS that marijuana makes the joint worse. It only helps gut, sleep, etc issues.


  4. Weed. ๐Ÿ™‚ It’s all-natural (it’s a WEED!), non-addictive, and it WORKS. Pretty sure Shane could probably find some for you if you ever wanted to try it. ๐Ÿ˜‰ It’s not drugs. It’s a plant! Every time you inhale oregano or garlic … it’s the same damn thing. You’ll sleep like a baby (well, a good baby that sleeps well, hahahah), have no hangover, and may even have joint pain relief.

    Liked by 1 person

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