Forgive Yourself For Not Being Healthy
Last updated: May 2023
For AS Community,
Five months ago, I quit my full-time job of three years managing a compliance team of technical writers at an adult educational institute. In all honesty, I knew the 8a-5p routine was unsustainable given my symptoms. Managing my AS is a constant battle. Although the predictable schedule and steady work was a welcome distraction, the stress of my company merging with another and the pay/benefits disputes were aggravating the level of pain in my body. My home and family life, my mental health, my exercise and eating habits, and of course my sleep suffered as a result. I may have officially left because of unfair pay, poor treatment of acquired employees, and difference of opinion in priorities. But I also left for my health.
Living and working on my schedule
I returned to being a homemaker, housewife, and mother. I also property manage our studio rental, maintain our home, monitor our health needs (meds, doctor appointments, dental cleanings, etc.), update our social calendar, and perform all the little tasks we wish we had someone for when we were both working. On the side, I write and counsel. Now, I am able to plan my own schedule, rest when I need, take time to cook healthier meals, go to the gym for a dip or stretch, and enjoy my family. The pain and fatigue are always there and at times I wonder how I was ever able to endure the work grind. Here's the reality: there is still work to be done, but how and when I do it is up to me.
Gone are the days of manual labor and being on my feet for a 6-10 hour shift. The cold of the outdoors in any season besides summer are intolerable because of my lazy circulation. I've had over a dozen jobs in my lifetime and wish I could retire. I am only 35. AS does that; makes you feel aged.
Despite my rheumatologist's reassurances that people with AS on my medications can have long lives, I feel an urgency to transcribe as much instruction and history for my son as possible, to put my affairs in order, and savor joy and love. Having AS is living on the edge of the unknown. I never know whether I'll wake up stiff and pained, or rested and excitable. Frankly, I worry that I'll wake up at all.
I debate with myself about my prescribed chemical dependencies. My medications tether me to town, ever reliant on proximity to a pharmacy to refill them. Even with a cold travel case for my injection, I can only be away for a month at a time. Which, in all fairness, is longer than I'll ever need to travel for, but I dislike the tether. And yet, I'm extremely grateful for them.
Without my medicinal tools (caffeine is included here), the spinal and joint inflammation would build up to debilitating levels. It took 15 years of arguing my case to specialists before I found a good rheumatologist who settled on a diagnosis that gave deserving weight to the mess of progressing symptoms I've had since I was 19. I've learned on this forum that many (if not most) AS patients or AS-suspected patients do not have adequate medical intervention. So I am grateful I fought as long and as hard as I did to get even to this amount of success. Despite taking three regular medications (a DMARD, a TNF blocker, and a narcotic; after a lot of tailoring on type and dosage), I only operate at 75% efficiency about 50% of the time.
This is after invasive spinal surgery and four years of physical therapy and training. At about 1p each day, fatigue overwhelms me. I still have flare-ups and inflammatory triggers. Some days are better than others. Travel, stress, overexercising, sitting in place too long, and ovulation aggravate it. I require many tools in my toolbox and may need to upgrade one or two at some point. Because treatment is not a one and done discovery. It changes as you or your disease change. What worked last year may not work next year.
So here is what I'd like to impart to others coping with AS or any of its related conditions: Wherever you are in your diagnosis, treatment, or symptom management, FORGIVE YOURSELF. You probably push yourself longer and harder than you should. You likely haven't achieved something you want to because your symptoms hold you back. You may struggle on a daily basis with an inner monologue of self-doubt, criticism, and a fantasy of comparisons to healthier individuals. Forgive yourself for not being where you think you should be. Every year you live with AS is a year earned. I love to hear from people in their 60s, 70s, and beyond with AS, because it gives me hope that I too can survive it that long.
If what I am is enough for me, it is enough for the world, too.
You are all beautiful! Thank you for your continued insights.
Do you notice worsening flares in colder weather?