Getting Out of Bed Is No Simple Task With Scleroderma
“Get out of bed … now!”
Are you kidding me? Getting out of bed would take forever.
“Time waits for no one. Embrace the suck, Amy.”
Stop yelling at me! I’m getting there. (And by getting there, I mean lying there not moving, with hot, silent tears rolling down my cheeks.)
“OK, let’s do this!”
I was encouraging myself, though it wasn’t looking good for the home team. As I lay in bed, I found myself in a conundrum. I was yelling at myself to get it together while simultaneously telling myself it’s OK to take my time — an odd contradiction.
I was determined to get out of bed, even if it killed me. And by the feel of it, it would indeed kill me.
I took several deep breaths and contemplated what to do next. I couldn’t use my knees, because applying any pressure to them felt like stabbing them with daggers. I was unable to lift with my elbows, so I lay there defeated.
But wait, I thought. If I can somehow maneuver myself, I can make this work. Maybe if I make it to one side, my legs will hit the floor first.
Looking back, this was a horrible idea. Alas, hindsight is 20/20, and when something goes smoothly, it doesn’t always make for a good story.
I decided I would go for it. The pain was excruciating, but I had to get up. So, with one deep breath in, I grabbed my covers and swiftly catapulted to one side.
And over the edge, I went.
Not on your life.
Thanks to my bright idea of grabbing the covers, I effectively became an “Amy burrito.” Picture a sobbing woman, tears streaming down her face, appendages wrapped up, and determination of epic proportions.
I landed with a resounding thud. It felt like my bones had shattered against the floor. They hadn’t, but it wasn’t pleasant nonetheless. I made a sound that could best be described as a wounded animal crying out for help.
I was a crying human burrito.
I probably looked like the Joker, too, because my makeup was running from all of the tears and sweat.
I was cocooned in my comfortable blankets now holding me hostage, and I had to decide how to get up from the floor. As I pondered a plan, a thought crossed my mind: Please don’t do it yourself. Call someone to help you.
It had seemed like that would be easy to do, but I couldn’t reach my cellphone, which I had conveniently placed on my nightstand.
No one tells you how painful autoimmune diseases can be, and they certainly don’t tell you about the flares that can take your breath away. However, the most crippling issue for me hasn’t been horrific pain, but rather the loss of my ability to do anything I want to do, including getting out of bed in a timely and safe manner.
Joint and muscle pain are hallmark symptoms of many autoimmune diseases. On good days, I feel like I’m on top of the world. I can take on any task and accomplish anything I need to do. On bad days, the pain is a nemesis I can’t defeat. Scleroderma is a beast!
The pain can be excruciating and isolating. Many of the people in our lives don’t understand how bad it can become and how debilitating it truly is.
For those of you with scleroderma, I urge you to educate those who love you about your disease. Do this on the good days. On the bad days, I encourage you to love yourself even more. It is perfectly acceptable to wrap yourself in a burrito and simply be. If that’s all you can do today, I’m proud of you.
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.