In many ways, psoriatic arthritis is unpredictable. I don’t always know what will trigger a flare or how severe it will be. My own experience, though, has taught me that pushing past a flare’s threshold often increased its intensity and duration.
I’ve also learned that going “full speed ahead” when feeling well typically leads to an epic crash. To avoid unnecessary flares, I’ve had to find a balance between what I need and want to do, and what my body needs.
Here is how I found balance in my life.
Before finding balance, I would go, go, go for a few days and then spend twice as many days and often weeks in bed recovering. It was no way to live. To put an end to this vicious cycle I had to stop living non-flare days like I wasn’t sick.
Instead of filling my weekly calendar with daily activities, appointments, or commitments, I began spacing them out. For example, if I had a doctor’s appointment on Monday and my daughter’s dance recital on Thursday, I wouldn’t plan anything on Tuesday or Wednesday. Scheduling days “off” allowed my body to recover and prepare for the next big outing.
In the beginning, this meant doing nothing but giving my body the attention and care it demanded. While frustrating at first, the payoff was worth it. I found myself canceling less and being able to do more.
Not having anything planned didn’t mean that I wasn’t active. The physical energy spent from grocery shopping, house cleaning, and walking the dog also had an impact on how much I could do during the week. I had to figure out how much was too much.
By using my fitness tracker, I was able to compare my activity and pain levels and figure out how much was too much. This information helped me know when I needed to make modifications. For example, I couldn’t expect to pop out of bed and hit the ground running if my step count for the previous day was 24,000 and my daily threshold is 6,000.
To accommodate a busier day, I could clear my schedule for the next few days, modify my activity by using a mobility aid, or make changes to the activity that would allow for more sitting and less walking.
One might think that having to pay such detailed attention to schedules and physical limits would be the most difficult aspect of preventing unnecessary flares, but it isn’t. The toughest part is accepting the results and following through. Knowing I needed to rest or modify an activity was challenging at first, until doing it regularly led me to be able to do more.
I realized that resting wasn’t the same as doing nothing. It was caring for my body. Treating inflamed areas of my body, giving tendons and joints time to recover, and releasing both physical and emotional stress is hard and necessary work! Resting didn’t make me lazy; it made me more productive.
The same goes for utilizing mobility aids. I used to feel ashamed for having to use a rollator or wheelchair to extend my time out, even when they were my only option for getting out! However, when I realized that the difference between using and not using one resulted in whether or not I could function the following day, my shame was replaced with the satisfaction of doing something that my illness would have otherwise prohibited.
The downside to creating balance by being attentive to physical limits and scheduling is that the boundary between what I can and can’t do, with or without pain, changes often. To reduce how often I crossed that line, I began a chronic illness journal.
My journal gave and continues to give me a full look at all my pain triggers, such as what I eat, my emotional state, the weather, and how I address my daily symptoms. All this information helps me plan better, avoid known triggers, and reminds me to address pain before it spirals out of control.
When I’m having an off-moment, this quote is a helpful reminder:
“It is not selfish to do what is right for you.” — Mark Sutton
Like you, I hope and pray that we will see a cure for this wretched chronic illness. In the meantime, it’s important that we not put our lives on hold. We may not be able to live without psoriatic arthritis, but when we schedule with our illness in mind, listen to and accept what our bodies are saying, and make modifications, we can live better lives.
Cynthia Covert is a freelance writer and blogger at The Disabled Diva. She shares her tips for living better and with less pain despite having multiple chronic illnesses, including psoriatic arthritis and fibromyalgia. Cynthia lives in southern California, and when not writing, can be found walking along the beach or having fun with family and friends at Disneyland.