December 31st, 2019
It’s hard to talk about hiking with Ankylosing Spondylitis without talking about establishing limits. I have one immediate limit (well more of a restriction): no backpacking. With back pain a near constant, varying levels of heel and knee pain, recently developed collarbone pain, not to mention body fatigue, carrying around even a light backpack for too long is often just adding fuel to the fire--the chronic pain fire, that is.
Hiking is not the only part of life that needs set limits, though. In all honesty, most aspects of life require some type of tempering from the lives us chronic illness sufferers used to lead. We may all know, or think we know, how important it is to establish limits to minimize our immediate pain and fatigue levels, and even to decrease the risk of summoning a flare.
But it’s often easier to establish limits than it is to keep to them. After all, I know that when I have a good day, I want to seize the opportunity to accomplish as much as I can before the aches and pains return. Unfortunately, that approach typically means the aches and pains return quicker and with more voracity than normal. Then there are larger choices, with more significant implications, that we need to make to ensure a better quality of life.
What Types of Restraints?
Of course, not all of the limits are choices. But for those of us who currently suffer with a more mild or moderate chronic illness, we’re responsible for making episodic, daily, or more long-term choices about what we can and can’t do (or what we should and should not do).
What I'm calling 'episodic limits' are restrictions made on an activity-by-activity basis. For example, as I've said in a previous post, I know that on a good day my mileage limit for a hike is somewhere around four. It’s questionable whether that’s a realistic limit, since I often start experiencing moderately intense hip pain and stiffness around mile three. It also depends on the terrain: any type of elevation gain may affect my ability to complete four miles without significantly intensifying the painful after-effects.
Daily limits are restrictions made on the amount one can accomplish in any given day. For me, it’s most important to set daily limits on Saturdays because that’s when I typically plan to get all of my chores and errands completed so I can have a restful and relaxing Sunday. Without a clear plan, I find myself completing most of my chores and errands, ignoring my body, and then the pain and fatigue force me into my recliner for the rest of the day and remove any chance of a relaxing Sunday!
But then there are more long-term choices we’re often forced to make. These choices are usually the most difficult because they require the biggest sacrifices and the results of those sacrifices do not materialize immediately. Examples of these choices include: where one can live and be mobile, what job one can realistically survive and thrive at, what hobbies one can engage in long-term, etc.
My Most Significant, AS-Related Long-Term Decision to Date
I had to make a long-term career choice shortly after I was diagnosed with AS. I don't advise making such significant decisions within the first year or two of diagnosis since you may still be coping with the diagnosis and trying to figure out what AS entails, or may entail. With that said, the decision I had in front of me was time-sensitive, since I was more than halfway through a PhD program.
I was diagnosed with AS during the third year of my PhD studies and that diagnosis completely changed the way I viewed the career of professor and academic. To thrive as an academic requires endless hours of research, writing, publishing, and presenting, on top of an ever-increasing teaching load.
As a teaching fellow at the University of Houston, I was fully responsible for two courses a semester, on-top of studying for exams and researching for my dissertation. In the case of this choice, it was more than just the physical stress of standing on my feet for an hour to lecture (though that’s definitely part of it). During that third year of my studies, one hour of lecturing left me fatigued for the rest of the day, never mind the swelling in my hand that limited my writing.
A career as a professor and academic, if I made it that far, was not a nine-to-five profession. As rewarding as it may have been, the job would also mean endless hours of work and stress, and stress increases pain and induces flares. I spent months thinking about the road ahead, and weighing my current struggles with the fact that the disease is only going to get worse, not better.
In the end, I decided that if I followed that path, I’d be increasing my daily stress, pain, and fatigue and decreasing the likelihood that I’d be able to do much else but work (little writing, hiking, or artwork!). Ultimately, my decision was based partially on how the immediate stress and the struggles ahead may increase the effects of my Ankylosing Spondylitis, and partially based on the scare job market for an academic in the humanities and my prospects.
I am in no way advocating that you give up on your dream job, or that you ditch your beloved hobby, thus making a diagnosis of AS a life-ending sentence. In fact, I think a diagnosis of AS is anything but a life-ending sentence, which is part of the reason for this blog in general.
I am confident that I made the right decision for me, and my decision meant finding a less-stressful career so that, when not in a flare, I could enjoy life outside of work. And instead of abandoning my career plans altogether, I transitioned from the career as an academic to a career in higher education administration (a nine-to-five type job!). My administrative job provides limited daily stress and allows me to enjoy activities that outside of work, not to mention opening the door for the creation of this blog and website!
What I do advocate is research, self-awareness, and smart (informed) decision-making. A diagnosis of AS, or any chronic disease, is an important step toward making informed decisions about your life.
-Jessica
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