The room is dark. My feet are tingling with pins and needles as they dangle off the foot of the bed. For a moment, I convince myself that I can stay like this for a few more hours.
I pull my knees toward my chest to bring my feet back onto the mattress. But the situation worsens. The discomfort of a wedgie fully awakens me. Underpants pulled upward is an intolerable feeling at any time of the day.
I begin the first uphill climb of the night. I tightly grip the cotton bed sheet and pull my upper body toward the pillow. The sheet has no tension and crumbles into a cluster of wrinkles in my hand. Great.
Sliding down the inclined bed, my body weight has pulled the sheet off, too.
Why is the bed inclined?
To clarify, sleeping on an incline is a necessary evil. Without muscles in my stomach and esophagus, I risk aspirating digestive fluids every night. To protect my lungs, the head of my bed must be raised 6-8 inches.
I’ve tried the adjustable bed idea, in which the bed bends in the middle, raising just the top half to form a V-like shape. But thanks to my circulation issues, bending at the hips for eight hours of sleeping is impossible. After an hour, I lose circulation in my legs. Plus, it creates other digestive issues below my stomach. Gravity is my digestion friend!
To give me a safe night of sleep, my father built me a bed platform that raises the head of the bed. Although the mattress is inclined, I can lie straight and still let gravity do its job.
However, like everything related to scleroderma, there’s no perfect solution. Each night, my husband and I slowly slide down our tiny, snowless ski slope. Our track downhill creates an avalanche of obstacles we must battle.
Other problems to consider
Our rescue pup has even rolled off the foot of the bed a few times. The poor thing sleeps hard, and in his comfortable sleep, he’ll roll right down the hill and off the edge! Then he’ll shoot me a confused look, as if asking me why I did that to him.
Clothing choices are another issue worth mentioning. I’ve given up on wearing nightgowns. The last time I braved one, I woke up thinking I was being attacked. My neck and shoulders were bound in a sea of fabric. It takes a lot of effort to untangle oneself in the middle of the night while exhausted and barely coherent!
But the worst part of the inclined bed is the climb back up. The muscles continue sleeping, even though the mind is semi-aware of the situation. The unattached sheets act like wet, slippery leaves on a steep hill. It’s a struggle to get traction to thrust the body upward. When I do find my footing, I need to exert a good amount of effort to overcome the constant pull of gravity.
Once my head is finally nestled in the fluff of my pillow, I realize I’m wide awake at 1 a.m. I look to my left and see the top of my husband’s head resting a foot below mine. Knowing he’s over 6 feet tall, I think about how his knees must be hanging off the bed, and the incredible wedgie he will soon awaken to.
Figuring out ways to live with scleroderma
Scleroderma is a cruel disease to live with. Patients must become creative problem solvers, always looking for ways to live with ailments that cannot be cured.
A scleroderma warrior never gives up! It’s time to invest in some deep-pocket sheets, and maybe install a pull rope down the center of the bed. But I still can’t figure out a solution for the inclined bed wedgie!
Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to scleroderma.
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