Why My Chronic Illnesses Make It Difficult for Me to Get Out of Bed Every Morning

Every morning, I wake up and refuse to open my eyes for a few moments. I believe if I don’t open my eyes, then my reality may fade away.

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

This doesn’t last long, though, as the pain soon sets in along with reality. But I’m also excited because I realize during the time I was asleep, I may have received messages from fellow spoonies. As I respond to them with a smile on my face, I dread the inevitable — getting out of bed.

To get out of bed means to stretch out my legs and anticipate the dislocations to come and relearning how to walk every morning. While stumbling out of bed, my postural orthostatic tachycardia syndrome (POTS) kicks in, and soon I’m blacked out on my floor with some joint out.

At this point, I consider giving up. I consider getting back into bed and never getting out again. I foolishly believe this will stop the pain and my reality. After a few minutes of this, I realize my ideas are ridiculous, and I become determined to get up. I grab onto whatever is nearby, whether it’s a night stand, the wall or the bed and hoist myself up. I’m beyond proud of myself. I’m proud that I not only got out of bed, but resisted the urge to go back to bed.

Then comes the dreaded shower. I will spare everyone the details of what goes on in the shower, but I’m a mess once I get out. The dysautonomia kicks in, and I often lie on the floor in my room, wishing I had time for a nap. I finally drag myself off the floor to do my hair and makeup, but the morning is essentially a drag with chronic illnesses.

So many people are sluggish in the morning, but Ehlers-Danlos syndrome (EDS) takes it to a new extreme with breaks, braces and chaos. I wish others knew how difficult it is to get up in the morning as a person with chronic pain.

We’re not lazy. We need breaks, help and motivators, but we will get up eventually. Those of us with chronic illnesses don’t give up; we take the day by storm.

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