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

13 thoughts on “Working with a Chronic Illness: Flexibility vs. Structure and Routine

  1. I know and fully understand the struggles of working with an illness especially one that causes pain. It takes a lot of time to get use to the hours and to find a job that is willing to work with various hours. I have battled Multiple Sclerosis for 16 years and deal with a lot of pain. It is sometimes very frustrating. I know things will work out for the best for you. You did a great job graduating! That was one huge step to be proud of! I started my blog a month and a half ago and it has been great. I have been able to connect with so many great people that understand my battles. I look forward to reading more of your posts. Take care and continue to stay strong!

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    1. Hi Alyssa! Thank you so much for your kind and encouraging words. I cannot imagine how painful and frustrating it must be to work for so long in so much pain. I hope you have been able to find a good pace for yourself that agrees with your body. I feel like almost as soon as I got used to my pace in grad school, it was time to graduate. And now, the very thought of a full time job is a bit scary to me. I am sure it will all work out fine in the end though. 😃

      Thank you so much for connecting with me here. It’s great to among friends who understand the struggle. I look forward to checking out more of your blog as well, and soon!

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      1. It definitely isn’t easy finding a pace that works with your body. Working full time while dealing with pain is a struggle but we all make things work. Sometimes it is hard not to give in to the pain but I try so hard to ignore it and move forward.
        I know it is scary starting a full time job while you are in pain. But you finished grad school which is such a huge accomplishment! You will succeed with this. I believe in you as you should too! I am so happy to be able to connect with you. I hope that the things I post will be somewhat helpful to you. I look forward to reading more of your posts and remaining in contact with you. If I can do anything for you please just reach out to me!!! Take care and have a great long weekend!!!

        Liked by 1 person

        1. You are too kind, thank you so much!! 😊 Your words of encouragement and support mean much to me. I know, intellectually, that you are right, of course, and I say the same things to myself too. But I just need to slowly build my own self-confidence back up. I’m sure I’ll get there. 🙂 Thank you once again! I am so glad to have found a friend in you. ❤

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          1. You will without a shadow of a doubt find your way! It is important that you set your own pace and try to not push yourself too hard! I am so glad I have found a sweet friend in you as well. I hope that somehow I will be able to help you through this step in your life! I know and understand how difficult things can be but I know you will succeed and do wonderful!!

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            1. You are likely helping more people than you realize, just by sharing your experiences and extending gentle support – and that includes me! ❤ Many, MANY thanks, Alyssa! 🙂

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  2. I like the way you’ve described your pacing and allowing your body to ‘thaw’ in the morning. Thank you for sharing my post too!
    I’m also keeping my fingers crossed for that balanced between flexibility and routine, which can be so hard (but not impossible) to find. x
    Caz

    Liked by 2 people

    1. Hi Caz, you are most welcome. Thank YOU for writing such nice thoughtful blog posts! 😃 I am glad you could relate to my morning “thaw”! Mornings are especially rough on me, so the thaw-time has really helped to manage both pain and energy. I hope we are both able to find the sweet spot between flexibility and routine that continues to help with that in the long term. 😃

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  3. Your awareness and ability to put that thought into words is really enjoyable to read. I only wish, for your sake, that it was about something you were over-the-moon pleased about, instead of dealing with chronic illness. I have to say before CFS I was able to work full time but to be honest (due to fibro) I couldn’t go 15 minutes over without my body negatively reacting. It seemed my body could give me an exact amount but no more. So my advice is to get to know your exact amount and try to find something fitting. Hopefully you will be pleasantly surprised. Wishing you great success in whatever it is you decide to do🌸

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    1. I am so glad you enjoyed reading this, and truly appreciate your advice. I will admit that I also wish my life wasn’t dictated by a chronic illness. But now that it is, I am also convinced to make the best of it! 🙂 I feel like I had found a decent pace during graduate school, and it’s going to be a new challenge finding that with whatever job I take next. But I know I will get there – perhaps after many a tramadol, but I will get there!! 😉

      Hope you are doing well these days. I am sorry I took so long to reply to your comment, it’s been especially rough the past few days. Take care, my friend! ❤

      Liked by 1 person

  4. I love the happiness/flame metaphor– that’s really beautiful. I’ve also had some amazing, truly happy moments occur at times when I’ve been in the most pain. It’s something other people don’t always seem to get– that our pain isn’t “caused’ by our moods, or vice versa. Sometimes there’s absolutely no correlation– sometimes the happiness flame can be turned up to a full roar even when our bodies are engulfed by pain.

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    1. I agree! I remember when my neurologist kept trying to tell me I was depressed is why I had body aches when the nerve conduction tests and MRIs all came out negative. I tried telling her I have been depressed before, I know what that’s like, and this isn’t it. But I always wondered about it anyway, you know . . . like whether somebody my mind/mood was causing it. So in moment like these, when I am in a lot of pain but also able to find joy, I feel vindicated! I know I was right in pushing for a real diagnosis instead of taking her word when I knew it was wrong.

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