Behind the Scenes: A Look at Daily Life as a Psoriatic Arthritis Patient
The best way to raise awareness about life with psoriatic arthritis is to dispel misconceptions and show a real look at the life of a psoriatic arthritis patient. With that being said, each patient’s experience of life with psoriatic arthritis is a little different. We have different life experiences, different support systems, and different coexisting conditions or comorbidities. But one thing is for sure, the pain we hide and the burden we carry is real and extremely exhausting.
Behind the scenes
In the morning, I wake feeling decidedly unrefreshed. Stiff, sore, and aching, I gingerly place my swollen feet on the ground, hoping not to trip on the way to the bathroom. Limp, slide. Limp, slide. Limp, slide. Shuffle. Limp, slide, shuffle. Life with PsA is tricky in the morning and the decisions I make early in the day will decide how the rest of the day will go. Can I make it? Do I need to cancel or reschedule plans? How long will it take to work out the stiffness this morning? If at all?
Doubt and pain
Mid-morning and early-afternoon bring another set of questions and pains. Fatigue begins to blossom in our muscles. Our overly ambitious plans of the morning give way to longer and more frequent breaks. Why did I think I could get all of this done? Should I push through and pay the price, or rest and possibly be semi-functioning by dinnertime? Who will I disappoint if I can’t carry on with the rest of the day?
The slump
The mid-afternoon slump hits harder for me than it does for most people. My morning meds have worn off by this time and I’m not due for more until evening, if I last that long. At this point, I want to complain loudly. I want to rail against the world, but I barely have the energy to keep my eyes open and meet the demands placed in front of me. Energy is at an all-time low as I reach for more caffeine. Life demands that I be alert. Napping is not an option. The fatigue makes it feel as though I’ve gained a hundred pounds over the course of a few short hours.
There is something about this time of the day that makes me always question if I even have it in me to continue fighting this disease. It is at this point when I feel my lowest, both mentally and physically. My fingers are swollen, the skin pulled taut around each joint. My steps are back to shuffles and my knees are so stiff they barely bend. Jumbled thoughts bounce around my sluggish brain, unable to put together complete sentences. At this point, I must ask myself... which fire should I tend to first, the one in my physical body or my mental state?
Fighting through the fog
I grab paper and fumble for a pen, frantically grabbing the thoughts in my mind, trying to put them into order. I write list after list, knowing that as the minutes pass, so will the thoughts. What must I still do? What am I actually capable of doing? Is it shot day? When is my next round of meds due? These questions hinder my thoughts as late afternoon slips into evening.
Evening comes
What’s for dinner? At this point, I couldn’t care less, but the kids are hungry and I must push on. Only a few short hours and we will all be in bed. Me, tossing back and forth in stiffness and pain while my husband and children sleep, blissfully unaware of my struggles... Only to start the cycle all over again tomorrow. It's a day-in and day-out journey. Some days better than others, some worse than others. Each day we fight to hide our pain and struggle to manage the exhaustion. We wither under the weight of our burden. This is what we deal with, life behind the scenes of the daily life of a psoriatic arthritis patient.
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