Daily Life with Psoriatic Arthritis
What does daily life with psoriatic arthritis look like? What does it feel like? With so many symptoms and side effects, how does this affect what daily life looks like for us? Carrying around the burden of chronic illness doesn’t just add doctor appointments, medical bills, and strained relationships it changes how we live our life every single day.
Daily life with psoriatic arthritis
I used to think that the mornings were the worst part of psoriatic arthritis. Depending on the day, they still are. If I slept at all, each joint creaks like the tin man after a long storm. Despite being in bed all night, my feet feel like they’ve just ran a marathon. My joints snap, crackle, and pop as I gingerly place them on the carpet, testing if they will actually hold me or not.
Mornings are hard. I get up early because it takes so long to work out all the kinks. I shuffle my way to the kitchen for a hot cup of coffee and the best thing I’ve found to work out the morning stiffness, my heated blanket. Curled up under the heat of the blanket and coffee in hand, I take my meds and prepare to face my day.
If something needs to get accomplished, this is prime time. The blood is flowing to my joints and my medications have taken the edge off the pain. This is really the best I’m going to feel for the day. The fatigue is manageable. It is at this moment that I am the most like my “old” self.
Then, after the “high” of the day, I smash head first into a brick wall. I can barely hold my eyes open or even speak in rational sentences. It’s more than a simple blood sugar drop. It is an all out, full blown, body shut down. Done. Game over. Quit.
If by some miracle I don’t surrender during the late afternoon shut-down, the evening is sometimes even worse than the morning. You only have 2 options, sit down for less than 3 minutes or just sit down and never get up again. Because if you sit for more than 3 minutes then try and stand up again, your body doesn’t have a prayer of pain-free movement.
I know that moving my body is important. My head rationalizes that it is a “good” pain. But at the same time, it is STILL painful. Now in addition to rusty joints, fatigue and brain fog are at their worst. All I want to do is lay down but I still have tiny people relying on me. Dinner must still be fixed, bedtime stories must be read, and prayers must be said. I can’t give up yet. My evening is not over.
Daily cycle: Right back to the beginning again
Finally, the kids are in bed and I am back to where I started in the morning. I’m huddled under the heated blanket again, or on my heated mattress pad, letting the trials of daily life with PsA wash over me. I sit here quietly and review the triumphs and tribulations.
- Did I remember all my meds?
- Did I remember to move and stretch throughout the day?
- Did I make all my doctor appointments?
- Did I fill in my symptom trackers?
When the day is done, what do we have to show? We carried the burden of psoriatic arthritis for another day. We continued to climb that mountain. Hopefully, we came out the other side, ready for a new day tomorrow.
How do you plan to recognize PsA Awareness Month?