Working with a Chronic Illness: Flexibility vs. Structure and Routine

In my last post about how I did graduate school with fibromyalgia, I touched on a point about being careful with how flexible a “job” grad school can be, which has its plusses, but can also be a double-edged sword.

This was not the first time that I thought long and hard about what kind of a job would be better when leading a life with a chronic illness: one that is very flexible, or one that has a more structured routine.

There are lots of “pros” to a flexible job, like that of an academic professor or a lab director. You don’t have to be up too early, can rest in the middle of the day, and take time off for flares as needed. But there are “cons” too: you end up working odd hours, and the body often doesn’t know what to expect when. Not absolutely having to do something now, also means it is easier to put it off for later – and the ephemeral “later” may turn out to be a worse time than “now.” This has the potential to cause much stress, which can be a trigger for a fibro flare.

With a more structured job, days are better-planned, and there is a chance to settle into a reasonable routine, and perhaps reduce the frequency of flares with better pacing. But when flares do occur, it is harder to take time off. The other downside is that constant working during the day, and the pressure to stick to the routine, can get tough on the body, especially if you’re prone to fatigue.

On that note, I read two very poignant articles. The first is a great piece on the importance of routine, on a blog I always enjoy visiting, Invisibly Me. Our blogger is fairly convincing in how routines can be helpful when dealing with a chronic illness, and gives some great tips on how to boost your routine as well.

And the second is the story of a recent Ph.D. grad, on the blog ErrantScience: Clutter, who moved on to a “regular” (aka, normal 9-5) job and gave a deft comparison of the two. Her conclusion: the grass is always greener on the other side! Somehow, despite all arguments and my own better judgement, I think I will always agree with that!

As for me, during my Ph.D., I recognized that maintaining some amount of routine was critical for pacing. That routine involved allowing my body to “thaw” in the mornings (not rushing it before it was ready), working mainly during my best hours (10 AM to 7 PM), and using the evenings for rest (i.e., not bringing work home). I tried to keep a routine for painting and blogging as well, but that sort of fell by the wayside. Overall, I felt the routine helped me progress towards the Ph.D., while also not working myself too far beyond what my body could handle.

And now that I am done with graduate school, and have no set responsibilities, I feel like I am getting a whole lot of nothing done! I was planning on keeping up with my blog and painting better, studying for some technical licenses, finishing up my leftover papers from grad school – and of all that, I am only making very slow progress on that last one (and probably only because there’s a deadline looming for it). I suppose after working long and hard for so many years, I shouldn’t begrudge myself the rest and relaxation. It truly has been lovely to lay down in the afternoon (a time when I often experience an energy slump) and just read for pleasure! But I dislike the way I am being unproductive in all other ways. So clearly, some level of “work structure” is important so I don’t rest away the entire day.

However, I am also the kind of person who feels stifled by too much routine. I feel a bit like the fish in a bowl, bound by structure, doomed to swim round and round. I like a bit of spontaneity, freshness, and interest in my days – and too much routine is just not interesting to me. Not to mention, if I wake up feeling particularly crummy, I like to be able to go in to work late or take the day off, and have the freedom to make up that time in other ways. Losing that kind of autonomy might push me to work through escalating pain, instead of “calling in” and admitting I am sick (I could hear the voice at the other end goingAGAIN?!?!?!“). All in all, I just don’t see pattern working out so well.

98_Going Round and Round
Going Round and Round
(11X14, oil on canvas)

And yet, I do like the feeling of getting work done in a timely manner (which requires some level of structure). Also, my body does usually fare better when it knows what to expect, rather than when it gets pushed in every which direction. Pacing, by its nature, requires a routine, and it has been proven to make life productive and less painful for many a chronic illness warrior.

I guess the bottom-line is that both flexibility and routine are important when dealing with a chronic, unpredictable condition like fibromyalgia. Ideally, I envision a job with a reasonable amount of autonomy, so there is the flexibility to call my hours. But with a job like that, there needs to be sufficient self-discipline to be able to set a routine for myself, so I can get all the work done, but on a pace I can handle and with allocated rest times that I don’t ignore.

I realize that it may be a tall order to find a job like that, where there is a mix of the best of both worlds. Until I get there though, that grass will always be greener on the other side!

Love,

Fibronacci