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.

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!

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!

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.

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!



Reality Bites

I have done my best to take things easy lately. I used to stress about squeezing in extra work to make up for the time I am missing while at aquatic therapy, but I relaxed on that since I found the therapy itself was eating a lot out of my energy pie, and I was asking for trouble by pushing myself any harder. So I continued to take my weekends off.

In all fairness, this routine has helped me attain a level of normalcy that I am happy with; but it does leave me with very little time to actually do any work! A lot of the experiments I run requires a certain chunk of time devoted to it, and I cannot always abandon them in the middle of it. So really, I only have three 6-8 hour days to do all my work in. As a result, I feel the pressure to make the most of those three days and be as efficient and “perfect” as possible in what I do.

And there’s the problem!

Featured Image: Darkness with a Hint of Light (18X24, oil on canvas) – sort of fits with the theme of the post and my current mood.

Last week, my symptoms flared in two of those three days, right after I had started to work on something. After months of not being able to do much, since teaching during the semester eats out massive chunks of my time and energy, I did not want to slow my already slow ass down any further. So I tried my best to push the pain out of my mind and continue working. This did not work so hot, so I tried to rush my work so I could go home and die lay down.

That was NOT a good idea.

In my rush and inability to think or focus beyond the pain, I had messed up. Granted, it wasn’t a massive mess-up but it made me look stupid, like I didn’t know what I was doing, and my boss made a big (enough) deal about it. Any other day, I would have brushed it off. But that day, I could not. I was both angry and upset, first at others for making it a bigger deal than it needed to have been, and then at myself for not knowing any better. I mean, what was I thinking??? I should have just waited until after the flare, and sucked it up about being slow, but I had to rush! And I had to mess up!

It seems unfair because nobody sees how hard I try – when I swallow my pain to get something done, I do that in private – but when I fall face-down, it’s always in public and everybody sees. It’s not that I want other people to acknowledge my struggles necessarily, I would just like fate to cut me some slack! Especially because I don’t work as much as I used to, I try really hard to do right whatever I do get done. But now I had messed up in really stupid ways and felt like a complete loser. Given how much pain I had withstood only to fail, I considered giving it all up in that instance, doubting the worth of anything at all that I do. I was ready to dig myself a grave (obviously figuratively, since I didn’t have the strength to do it literally), crawl into it and stay there forever. It hurt because I expected the universe to co-operate for once, when I really was trying so hard, but of course that wasn’t to be. And I should have expected that. But I didn’t. And I was mad about that too.

I did learn a few lessons out of this miserable week though: (1) I will never make the mistake that I did which started the downward spiral in my mood. (2) I will make doubly-sure to not rush myself, especially when I cannot focus in the midst of a flare. (3) I realized that I am obviously not at nearly as much peace with my current condition as I thought I was. I don’t seem to have quite accepted it enough, as yet, that I am not the person I used to be and that I will never be able to do what I once used to do.

At least that last point gives me something to actively work on! And there’s a reason to crawl out of my figurative grave I guess. At a time like this, I need to keep reminding myself of all the good things that fibromyalgia has brought to my life. Maybe this will propel into getting off my butt and write it already!!