During Flare-ups, My Scleroderma Body Pauses Life
Messy is the best word I can use to describe a flare-up caused by scleroderma. My home, my thoughts, my life — they all unravel, and it’s messy.
When my body is weak and consumed by aches, I spend a lot of time under blankets. During a flare-up, my muscles become useless, and I can barely handle a walk to the restroom. If I do make it out of bed, it’s only to the couch. The warmth of cuddling myself doesn’t ease the pain, but it does allow my body to heal.
I could go on and on about the disaster that becomes of my house while I’m down for the count. I could also fill up this entire column describing the physical disaster I become as I lie helplessly waiting for the flare to end. But that’s not the dominant mess an autoimmune disease can leave behind.
Living life on pause
One of the worst parts of a flare-up is how I feel like I’m living life stuck on pause.
My kids and husband continue their usual daily routines. They buzz around me as they make their way through each day, while I’m just a spectator. I can’t participate or join in, because my button is stuck on pause.
When they are all out of the house and I’m alone, the projects I had planned stare at me with anger. To-do lists on my calendar get moved to each new tomorrow. Daily chores begin to pile up like mountains that slowly appear to become too steep to conquer.
My plans are placed on hold
A few months ago, I had an exciting idea that I would finally transform my builder-grade entertainment center into a homely masterpiece.
I love building things, so I planned out a faux fireplace and mantle. I’ve always admired mantles filled with family photos and holiday decorations. I carefully drew up the plans and purchased the materials to create the structure.
Now all I can do is stare at this wall from under my sherpa-lined blanket. The painter’s tape I so carefully placed on the wall to mark locations is peeling off. The holes I made to peak in behind the Sheetrock are temporarily covered with cardboard from Amazon boxes.
The project, like myself, is on pause while I wait for this flare-up to pass.
Waiting for it to be over is hard
It’s hard to convince myself it is temporary, because I can only hope that it is. Even when I take control of my pessimistic thoughts, there’s still a fear that lingers of not knowing with certainty how long the flare-up will last. All I can do is rest until my pause is lifted and I can finally tackle the chaotic mess it leaves behind.
If this happens to you, it’s important to make conscious efforts to cheer yourself on. I give myself pep talks. I’ll say things like, “You’re doing so good. Hang in there. It will be over soon.”
I also use this time to study the changing faces of my children and cuddle my fur babies. And I can’t say I don’t enjoy the extra gentle back rubs from my loving husband!
Scleroderma flare-ups are messy. If you can relate, it’s important to be patient with yourself. We must find a way to stay strong mentally and emotionally. We do this so we are ready to join back in and enjoy life moving forward once again when our bodies are ready.
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.