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The Love-Hate Relationship a Person With Ehlers-Danlos Syndrome Has With Their Bed

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When you have a chronic illness and you think of comfort, one of the first things you think of is most likely going to be your bed. Rest is very important when dealing with any illness, so why would there be a love-hate relationship with your own bed? It all depends on the illness!

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

The illness I am facing is Ehlers-Danlos syndrome (EDS). EDS is a chronic condition that has to do with collagen. The collagen in my body is faulty and doesn’t do what it is supposed to and it wreaks havoc. Collagen is a protein found in connective tissue — it’s what holds our bodies together. Our tendons and ligaments do not hold our bodies together very well at all. Ehlers-Danlos patients are prone to chronic subluxations and dislocations and each patient is as different as a fingerprint. I struggle with full-shoulder, clavicle, rib, and hip dislocations and subluxations as well as craniocervical instability (CCI). The running joke in my family when it comes to the CCI is that my head isn’t screwed on straight. That is the best way I can explain CCI to someone who isn’t familiar with medical terminology. I use that joke to lighten the mood so people are most likely to hear me out.

Now that you understand a little better the basics of not only EDS, but my EDS, let me paint you a picture of sorts.

You’ve been going all day long and you have really pushed your body past its limits. You have been looking forward to the moment you can come home and crash and give yourself an actual break. You shower before bed and that takes a good bit of energy out of you, but it had to be done. You go to change into some comfy PJ’s and while you’re trying to put on the bottoms, your hip subluxes just enough for you to really lose your balance and you hit the ground. Bam, you dislocate your shoulder and hit a nerve. No big deal, I’m pretty much used to the pain by now so I just laugh it off as I head for bed.

I go to climb into my bed and as I’m trying to get comfortable, the weight of the blankets is almost too much for me to stand. Pulling myself into the sheets sends my hips and ribs into a panic. One hip subluxes and a couple of ribs dislocate just from the simple task of getting into bed. Now I’m struggling to breathe from the excruciating pain of dislocated ribs. I take a break from trying to get comfortable and just lay there and wait for my body to calm down.

Once everything has calmed down I begin again. I have a lot of pillows because I position them in ways where I’m less likely to dislocate something in my sleep. Usually by pulling one pillow between my legs and wrapping my arms around another pillow. The movement of simply dragging those pillows into position is yet a struggle. This time my shoulders are falling out of the socket and my clavicles are subluxing. I fight through it all even though it feels like I am made of jelly and my bones are moving freely as they wish throughout my body. I fight to get comfortable.

I lay there in what I assume is the position in which am going to fall asleep in, I realize this is not at all comfortable and I need to roll over. The clothes on my body are suffocating me with every move because my joints are too weak to fight the friction that is my pajamas against the sheets and comforter. Finally, I physically fight my way into a comfortable position and doze off for a couple of minutes, only to wake up to a pinched nerve. When your body relaxes, so do the muscles. When my muscles relaxed, my shoulder dislocated and a nerve got hit. Now my entire arm feels like it has been struck by lightning and is now on fire accompanied by a tingling sensation. I’m wide awake wrestling the sheets and clothes trying to get comfortable, yes, again.

This time I find that “sweet spot.” I am thanking the good Lord that the fight is over… and now I have to use the restroom. You have got to be kidding me. I fight the sheets off of me and I climb the mountain that is my pillows to get up and go to the bathroom. I am beyond exhausted at this point. I get back into bed, and you might as well reread everything you just read. This is my life when it comes to sleep. But you see, I rarely, if ever, truly get comfortable. Not just when it comes to sleep, I mean in general. My body is so off balance with the constant subluxations, I always feel like something isn’t quite right. That feeling is always accompanied with pain so that’s why you will find me wiggling and moving to try and put something back in place. It is a constant battle between mind and body.

My Ehlers-Danlos people are the real fighters.

Originally published: September 29, 2016
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