Coping With The Unpredictability And Uncertainty Of Psoriatic Arthritis
It never fails. The moment I think I have found my groove and have figured out how to somewhat live with psoriatic arthritis, the rug gets pulled out from under my feet.
How do others cope?
Accepting that I had an incurable autoimmune disease wasn't enough. I also had to accept the unpredictability and uncertainty accompanying a psoriatic arthritis diagnosis to protect my mental and physical health. But even that wasn't enough; I also had to learn how to cope.
To see how others were coping with the uncertainty of psoriatic arthritis flares, I headed over to the PsA Facebook page. Here is what community members had to say:
Know when rest is best
Some flares slow me down a little, and others that knock me back into bed. It took me many years before learning how to appreciate my good days and rest without guilt. One thing that has made doing both a little easier was recognizing that resting on the bad days was the healthiest choice I could make.
"Take every day as it comes and appreciate the good days, and when I'm struggling, list what I have to be grateful for."
"Enjoy and appreciate the good days and rest without guilt on the bad days."
I know, I know, easier said than done. Want a tip? Do you struggle with listing the good things in your life when you are in a high level of pain? I do! To help me remember them, I have them written down in a notebook next to my bed.
Finding acceptance where you can
Every day with psoriatic arthritis is different, whether I am flaring or not. Before my diagnosis, I would plan out every hour of every day, weeks in advance. To go from living the life of an over-planner to living in the moment was one of the most challenging changes I had to make.
Living in the moment doesn't mean that I don't make plans or follow a schedule, but that I have learned the importance of planning less and being flexible with the plans I have made. It is about accepting where I am in the moment and not pushing to be where I would rather be.
This community member said it best:
"My main coping strategy is if I hit a "wall," I stop and rest. I don't push it, which is very hard to do."
One of the hardest things to do is to recognize when it is time to stop pushing. My "wall" may be different than your wall. There was a time when I felt that the wall represented the moment I reached my body's breaking point. Now I view it as the moment that I find myself struggling to complete an activity.
I picture my body bouncing into a wall with each mistake or failure to perform whatever I am doing at that moment. Many times, this thought process has allowed me to resume and finish what I was doing sooner than had I pushed to my breaking point.
Additional tips for coping
There is no perfect way to handle the twists and turns of life with psoriatic arthritis. Everyone's approach will be different. Here is how a few of our community members cope with the unknown of PsA:
"I pray a little, cry a little & cuss a lot! Out of the three, I think the cussing works best!"
"Every day's a new day."
"It depends; sometimes I would cry cause of the pain, and yes, (it's ok to cry sometimes) then I try to do some relaxing meditations, but most of all, I pray. And to take my mind off it, I try throwing myself into my school work."
Crying when our illness makes our life difficult, creates pain, or adds a new layer of limitations is not a form of weakness. It takes a lot of strength to allow ourselves to grieve what we lost, even if the loss is temporary. I also utilize prayer and meditation to let go of the guilt that caring for my body creates. And when all else fails, I scream and cuss!
How do you cope with the uncertainty that psoriatic arthritis brings to your daily life?
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