The PsA Days of My Life
If you asked me to describe what a typical day is like living with psoriatic arthritis, I'd have to say there is no such thing. There are low pain days, high pain days, and days with heavy fatigue and brain fog. A day can start one way and end another. My baseline pain and activity level fluctuate. It's hard to predict how I will feel from one day to the next, which can make planning anything—from a simple coffee date to a vacation—a real challenge.
What do my good days with psoriatic arthritis look like?
Some days, I wake up feeling relatively well-rested and ready to take on the world. For me, a great day is one of not needing to take anything for pain relief until evening. Not to be confused with holding out until evening to address pain, but that my pain level is low enough to get through the day without medicinal assistance. My fear of severe flare days makes it hard to enjoy these types of days. Instead of using them to do something just for fun, they are spent catching up on work and other commitments.
What do my bad days look like?
Other days, it feels like I got hit by a truck overnight. On those mornings, it takes everything I have just to get out of bed. And forget about getting dressed. These are the days when psoriatic arthritis holds me prisoner, and my bed serves as my jail cell. The day is spent drifting in and out of sleep while watching television.
What do the in-between days look like?
Some days, my symptoms are manageable, and I can do most of the things I enjoy. While other days, even the simplest tasks — like cooking dinner or taking a shower — are too much for me. I may start the day in pain and feel better by evening, or a great morning may be interrupted with fatigue and pain by lunchtime.
How do I balance the unpredictability?
It's frustrating not knowing how my body will respond from one day to the next. Will this be a good day or a bad day? Will I be able to do what I want or need to do? There's no way to know for sure which can make managing my illness—and my life—a real juggling act—especially when dealing with multiple chronic illnesses.
Juggling one condition is hard enough, but having four, plus a mystery symptom, all with their own agenda, any ability to plan around them has disappeared. With that said, I have to force myself to do things I love and enjoy. I cannot wait for a “good” day. Instead, I have to find a balance between having fun despite the pain, working when my brain and body allow, and allowing my body the time it needs to recover from severe flares or extra activity.
Whether I like it or not, these are the psoriatic arthritis days of my life. Every day is different. Some days are better than others, and some days are worse. I must give myself grace on the bad days and celebrate the good ones — even if they're few and far between.
How do you celebrate your good days?
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