I am in a flare up of my mobility and pain issues (arthritis/joint pain) which means I cannot really do much, am using my manual wheelchair in the house, need to rest quite a lot and am not exactly on the top of my thinking game. Am on prednisone and many other drugs (like gabapentin which makes me feel like a zombie) to deal with it.
The real distinction this time to me is that I can look back over many years of this happening and see the patterns very well. My new normal baseline, in pain and mobility, is pretty decent and predictable and I’m stronger and healthier than I have been since 2005 or so.
So a flare up looks like going from 50 to 10mph rather 30 to 10 to 20 to 15 to 25 to 10 — more of a “suddenly flattened, but temporary” than a hideous wobble in a chaotic unpredictable journey. I feel less afraid that I will be down for a year, and fairly confident that in a couple of weeks I’ll be cautiously bouncing back to normal. Fingers crossed that is true!
It is easier to see what is happening and react appropriately when it isn’t just a hideous chaos of up and down in pain level.
I think the differences are mainly that I know how to manage better, I’ve been wiser in respecting my limits (not THAT much wiser but, better than I was) and limiting what I do — like not traveling a lot and having really consistent sleep. Another difference from 10 years ago is that if I’m in bad pain, I :::stop:::! I stop and rest and adjust my lifestyle and my expectations temporarily, rather than taking pain drugs and powering through ie making it worse.
Now, when I did “power through” it was because I felt I had to, or I wanted to – like going to Vienna to speak at a conference with both feet in soft casts, in a manual wheelchair, by myself, in the dead of winter in the freaking snow. I wanted to do things to be a good parent, or for my career, or because I worried it might be my last chance to travel if my health got worse. I did not want to lose my jobs or career and would end up using all my PTO/sick/vacation time when ill and then feeling under a cloud and then going off on leave when things got unbearable. (Now, I feel like I can take time out of work and come back and trust my job will be there.) So, I respect my past choices, but I’m glad I decided to change my priorities to center more on making space for rest and healing.
This is not at all to imply that anything is “all in my mind” or that the power of positive thinking can cure chronic illness. It took a pretty radical shift in some underlying ways of thinking for me to change my approach (with help from a fabulous, smart therapist) to try to handle my activities and condition in a more sustainable way.
💙 so much this.