How I did Graduate School with Fibromyalgia

Earlier this month, I officially graduated with a Ph.D. in molecular genetics.

It is both relieving and terrifying to have graduated, finally having no set obligations. After the months of intense flares that I was able to tame not all that long ago, I have decided to take a break before moving on to another job. Alas, I still have papers to finish in the meantime, and my future to contemplate, so it will be interesting to see how this break turns out!

But now that I have finally graduated, I feel a bit more confident writing this piece, a list of 10 things that helped me do graduate school with fibromyalgia.

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When you feel trapped . . . but know you’re capable of flight

It is sort of a “Part II” of my Reflections on Graduate School, but with more practical information regarding the management of fibromyalgia, so I hope that it helps a few more of us chronic illness fighters navigate through the quagmire of graduate school. And because many of these suggestions apply in general as well, they may as well be my 10 tips for managing fibromyalgia!


1. Prioritize –  With a chronic illness, you may not be able to do everything you would like. So prioritize what needs to be done first, what is most urgent, and do that first. Work your way down the list of less important things (aka, things that can wait till tomorrow). That way, if you run out of your energy aliquot before getting them done, you do not have to push yourself to do it anyway.

2. Get help when needed (undergrads/assistants) – It can often be difficult to admit you need help, and then put forth the effort to train people under you, and supervise their work. But with the right, reliable person, this can be a lifesaver! It takes some work to switch from the “doing”  mode to the “managing/supervising/mentoring” mode, but those are extra skills you have the opportunity to learn! And it is win-win on both sides: your student learns some new stuff, maybe even feels a taste of independent science (depending on their level of experience), and you get to rest your body a bit, while still working your brain!

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How fibromyalgia helped me be a better mentor

3. Make your work area as comfortable as possible – If you spend a lot of time at your desk, it helps to create an ergonomic workstation – which, of course, is a dream on a grad student salary!  So I have a pillow on my high-back office chair (both hand-me-downs), and a heating pad against my back, to help me sit “without” pain. I also have a small box under my desk, and a blanket. The blanket is for the extra chilly-feet days. As for the box, I often put my feet up on it so I can recline, and be comfortable at my desk. I realize it is not necessarily the best posture at all times, but (perhaps unfortunately) in my mind, pain relief trumps all else – and it really feels so good to stretch my legs out comfortably on the box! I also have a TENS therapy unit at work. I am not 100% sold on TENS therapy, and it looks ridiculous to be twitching or jerking if someone walks in, but I’ll try anything when I’m desperate! A friend also let me have an ergoBeads cushion to rest my wrists while typing. I am not frequently wracked with wrist pain, but I am grateful for anything that may prevent it!

4. Seek working solutions for cognitive problems – I am perfectly aware how cognitive dysfunction can get in the way of the smartest of people. Unfortunately, brain fog has struck me at some of the most inopportune times as well. I do not have a solution for every time this happens, but I have written an article before on how to manage brain fog so you retain sufficient brain function on a day-to-day basis. I hope that provides some ideas on this point!

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As any self-respecting scientist will tell you, the solution to brain fog is of course COFFEE! (Do not believe them blindly)

5. Slow down – One way of minimizing brain fog is to slow down and take it at your own pace. I know that in graduate school we are conditioned to feel guilty for slowing down, and not all professors even tolerate it enough to let us continue. I was very lucky by that measure. I had a project that could sit in the freezer overnight (or even a few days) if needed, and a prof who did not kick me out for doing 10 AM to 6.00-7.00 PM days. I am ashamed to admit that for about a year, when I was on physical therapy, I worked part-time (<8 hours) two days a week, though I tried to make it up sometimes over the weekends whenever I could. I don’t think my boss has been too happy about it necessarily, but I have tried to be as efficient as possible during that time, and finished all my responsibilities on time. I feel like slowing down was my #1 key to even continuing in graduate school, though I frequently worried about coming off as “lazy” or “unmotivated.” But the truth is, my motivation to continue doing science is what convinced me to keep the reduced hours. The alternative was to not do it at all. I wrote more about this topic in a previous post whose title says it all I think: Slow and steady stay in the race.

title_ _Brain-body problem_ - originally published 10_1_2010 - Jorge ___
The sub-conscious can be a good motivator, but try not to let it bully you!

6. Use flexibility well – Flexibility is a double-edged sword. If you are working independently, and do not have an overbearing boss, academia offers more flexibility than any other situation I can imagine. This is great on those really bad days when you absolutely need to stay in bed. Assuming your work can wait (and I realize not all work can), the flexibility means that you can rest now, and just catch up over the weekend, if needed. However, flexibility can also lead one to keep odd hours, or no set schedule at all from one day to the next. This can be problematic as your body does not what to expect when. I feel like keeping a steady routine was really key to me getting a handle on my “new normal”, so use the flexibility graduate school affords with care.

7. Do not procrastinate – The other issue with flexibility is that it becomes really easy to procrastinate! This is usually a bad idea, in my opinion. Almost invariably, as the stress of an approaching deadline builds, I feel my FM symptoms worsen. If at that time, I also need to do a bulk of the work that I hadn’t done before, that robs me of the rest time that my body needs. Also, it is more stressful if you know you have a lot of work to finish in very little time. So if your symptoms react to stress, try not to procrastinate!

8. Sleep well before important days – Lack of sleep or poor sleep often makes everything worse for me! I hurt more, am tired more, and can think less. So if there is an important day – such an exam, meeting or interview – I try to get good sleep the night before! I have found zolpidem (Ambien) to be an excellent aid when all else (hot baths, herbal teas/supplements, etc.) fail.

Sleep
The secret to avoiding this vicious cycle is to use flexibility well and not procrastinate! And, of course, treat your body well!

9. Practice and prepare, but be OK with making mistakes – This is as true when you are teaching, as when you may be giving talks and presentations. Despite practicing a lot before my dissertation defense, I fumbled more times during my talk than I would have liked. Though in retrospect, and from the audience’s perspective, it was not such a big deal, it sort of wounded my perfectionist’s soul. And yet, each time, I picked up where I fell, shrugged off a little and moved on. When I have made mistakes while teaching classes, I have admitted it, and then turned it into a learning opportunity. I feel like fibromyalgia has taught me more about being OK with making mistakes than anything else ever – enough so I now call myself a “recovering perfectionist”!

10. Try not to schedule back-to-back classes – This one especially holds if teaching long classes, such as 3-hour-long laboratory courses, when you are on your feet and active the whole time. It is also one of those things where it just depends on the person! If it works better for you to schedule it all on the same day, and just have one miserable day a week, instead of two, then ignore this point. But if you are like me, and that one day casts a shadow over the entire week, then it may not be worth it. I have found it easier to split it up over multiple days, so I am not under too much strain on any one.


Graduate school (in an academic institution, at least) is interesting because you are part employee and part student. So I hope that my management tactics has some relevance not just in graduate school, but school in general as well as the workplace, and not just for fibromyalgia either, but other chronic illnesses as well.

Cheers to all my fellow-fighters!

Love,

Fibronacci

Slow and Steady Stay in the Race

Yesterday, I spent some time meditating and reflecting over the last couple of years of my life. It was brought on by a conscious decision to slow down my pace as the stresses mount on me towards the end of the semester causing a steady decline in my health. Though I sometimes feel guilty or silly for slowing down, I keep telling myself that it is not a crime to put your health before your work, and take a weekend off to recharge. In the long run, I think that will be the key to my finding some level of normalcy in my life. And looking back, I think it already has!

Featured image: Finding Light (9X12, oil on canvas). I could not think of a more appropriate painting that could possibly describe the journey that I write about below.

A year or so ago, when I hadn’t learned to slow down yet, I was super-miserable all the time. Every day I would force myself to rise even though I felt thoroughly unrefreshed. I ignored the stiffness in my body that screamed in pain when I overruled its need for rest and forced it into some clothes and shoes as I made my way to work. Despite the gallons of coffee, every afternoon, I was close to passing out from exhaustion. I would have to crawl my way home before I collapsed to save myself the indignity of passing out at work (which has also happened before). I was on a non-stop roller-coaster ride where I ignored my body to accomplish more things, but then I would hit a new low and not be able to rise from bed for the next few days. I worked my ass off the days I was at work and then wasn’t able to work at all for several days after. I needed at least one sick day every week on average, especially after the days I taught two classes back-to-back, 2-3 hours each. Several times, I thought of quitting everything, wondering if anything was worth it anymore.

Then at one point, I learned better. I don’t know what pushed me over the edge – maybe it was a missed opportunity to attend a conference because I couldn’t get up from bed that day – but I decided to quit that lifestyle. For good. I slowed down. I went to work later than usual, and gave myself time to “thaw” and meditate in the mornings. I cut my work hours down to 6-8 a day (instead of 10-12, at times 15, before). I switched out my chair for a slightly more comfortable one. I accepted the help of a pillow from a friend. I wasn’t shy about using a heating pad at work – which helped a LOT! I got a box and put it under my desk, ahead of my chair, so I had make-shift chair-cum-recliner to help ease the pressure on my legs. Sometimes, I use my electro-therapy machine for a quick massage at work and try not to feel awkward using it. I started taking more weekends off to recharge than I ever did before. I spent more time with my husband, learned to relax more, explore the outdoors, exercise gently and try to be happier outside of work in general. I started thinking about quitting the crazy scientist routine and finding a job I could be happy in (aka, one that is sciencey), but one that would also allow me some guilt-free time off.

This was not an easy change for me. And I would say I am still in a transition state, because I still feel guilty at times about the time I take off from work and feel the need to push myself harder than I should. BUT . . . what I have been able to do so far has already helped! While I still have ups and downs, they are not nearly as dramatic as they used to be. I feel calmer and more grounded in general than I ever did before. While I still feel an energy crash towards the end of the day, I feel the blow of the crash less harshly than before. While afternoons are still rough on me, I now use some tea and meditation to try to calm my body instead of the gallons of coffee I dumped inside me before. And I have fewer days when I feel like I am about to pass out from the exhaustion. I also need to take fewer sick-days off from work now that I work less everyday. In other words, I am starting to find a steady state for myself, that is lower than what it used to be, but it also means I have less far to fall when I do, and I fall less frequently!

From time to time, my old self still pipes up and wants me to speed up and stay rushed in order to win the race. But when I took life so fast, I failed to enjoy the sweet moments along the way. It’s like my surroundings were blurred, and I missed out on enjoying the fruits and flowers by the road-side. And then I hit a point, where I realized that if I didn’t slow down, I wouldn’t even be in the race! Fibromyalgia changed my perspective on life in general. Who cares if I win the race or not? (Why the hell are we running it anyway?) Even if I did win, I was losing so much along the way that was it even worth it? Life with fibromyalgia feels more like a marathon than a sprint. The slow and steady may or may not win the race, but at least they can continue to stay in the race. And maybe, just maybe, that’s more important anyway!

Love,

Fibronacci