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

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Fighting the Denial of a Chronic Illness

I had initially intended my last article to be the final chapter in the Acceptance series of posts. However, recently a friend asked me a very poignant question borne of that post, which prompted this one. It is sort of an extension on my last post on “how to seek acceptance,” in answer to her question:

How do you fight the denial that creeps up even you mentally decide that acceptance in the best way forward?

In my best attempt at a response, I thought I would share my story, with more personal details than the previous one, about how I fought denial while in search of acceptance.

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The convoluted path to acceptance

If you’re a frequent reader of this blog, you probably know that I used to be a very ambitious, go-getter type of person. I worked hard, and for the most part, enjoyed working hard because I enjoyed my work! The body was just a vehicle to get me about, nothing that needed any tremendous amount of attention. The idea of “listening to the body” was fairly foreign, it sounded “whiny” to me, like a hypochondriac. And this attitude meant I landed myself in frequent flares because I would ignore my body and what it was trying to say to me.

My avoidance of what the body was trying to tell me was not without reason. I felt like if I were to listen to it, I would never do anything, because I was always tired and achy and never really wanted to do anything at all! Every morning was a struggle just to rise and dress for work (and it kind of is even now). Mind over body, I kept telling myself, however. I just needed to will myself into breaking through the chronic illness mode. But the walls proved harder than I expected. And I almost always lost that battle.

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It took me a lot of soul searching to realize that listening to my body is not being beholden solely to its desires.

I was afraid the latter would trap me into the “this is all that is possible” box, and I would not be able to see opportunities outside the box, even if they beckoned at me. I refused to accept all that my body felt or felt possible of it, but I realized that I needed to hear what it said. Then I could evaluate it in my mind, and decide on the best course of action. Mind and body needed to go hand in hand, not fight against each other. The mind still rules, but uses the body’s counsel, as it were.

And that, in a nutshell, is the essence of what “acceptance” has meant for me: Listen to the body; push it but without pushing it over the edge. The mind is still the king, the one who ultimately decides what to do, but one who uses the queen’s (body’s) guidance and counsel. It does not have to always do what the queen wants, but the mind-king must keep the queen-body in the back of his mind so as to not offend her. This idea of acceptance is distinct from “denial,” where the mind rules entirely by itself; and far from “resignation,” where the chronically ill body calls all the shots.

What convinced me to finally embrace this meaning of acceptance (and quit denying my body all of the time) were three pointed realizations, that I arrived at through many months of soul searching and internal dialogues:

1. The first thing I realized is that my old state is not coming back – and certainly not if I keep fighting myself like this!

Educating myself about FM and chronic fatigue helped me the most to come to this realization. Current understanding suggests that these are disorders of central sensitization. A maestro from hell, the brain and nerves in a fibromyalgiac have become so good at shooting off pain signals that they overreact to every perceived stimulus by doing just that. Fatigue and sleep quality are believed to linked to similar pathways, thus making us feel tired all the time (as if just fighting the pain wasn’t tiring enough!). The upshot of learning the science behind the condition was the recognition that fighting my body, and in turn having more pain because of it, is only setting me up for long term failure. The more practice the nervous system gets at sending pain signals, the better it is ever going to get at it by strengthening all those overactive pain-response pathways even more. Therefore, in relieving my body of as many perceived pain signals as possible, like allowing myself to rest as needed, I am really doing myself a favor. Perhaps, in time, it might even allow the brain a chance to “cool off” its pain response a bit.

'Slow down - you'll live longer,'
The wisdom of a snail

If you are curious to learn more about central sensitization, check out this video in the blog Sunlight in Winter, whose author does a beautiful job of spreading awareness for the science behind the syndrome in patient-understandable knowledge.

2. The knowledge of the science behind central sensitization made me realize that I needed a truce with my body. And the said truce is my only hope of getting my life back.

It may not be the life I had initially planned, but if I didn’t make some kind of peace with my disorder, I would not have any kind of life at all! Getting this through my thick skull was a huge step towards acceptance for me.

This truce was not giving in to the disease, or resigning away to the illness, but simply making a conscious decision to listen to my body more. Like most things in life, it is of course easier said than done. I have struggled with it off and on, along with my faith that this is the sensible thing to do, and I am still in the process of learning how to listen well.

As a scientist, I am quite used to observing the outside word, our experimental universes. But rarely do we use ourselves as the subjects, while also trying to be the objective observer of ourselves! I have found that it can be quite difficult at first, and really easy to slip up on even after doing it for a while. But what has probably helped me the most to detach and observe myself in as unbiased a way as possible is mindfulness meditation. I have trained myself to keep a piece of me in my head to keep a watch over myself, my thoughts and my body. Sometimes this watchkeeper may bring to my attention my negative train of thought, or at others, remind me to relax my shoulders and fix my posture.

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Mind and body must work together to find peace

Many of my blog posts emanate from me tapping into this watchkeeper to see what she has observed, and then the posts are the results of my analysis on those observations. She has given me many insights into my thoughts and feelings, especially on the more unpleasant aspects of dealing with a chronic illness. I am not a believer in wishing negative thoughts and feelings away (I know from experience they don’t go anywhere, they just fester under the surface). So I decided to work through them by writing/blogging. Aside from being cathartic, I have also come to greatly appreciate the support of others in the chronic illness community, especially those of us who are also young, and face that additional stigma of “oh-but-you’re-so-young,-how-could-you-possibly-be-sick.” Being around others with similar conditions and associated feelings, and being able to share in their challenges validated my own.

Through my blogging experience, I also realized that being surrounded by accepting people also promotes acceptance in one’s own heart. You see that a chronic illness does not have to be the end of the world, that it is possible to fight it without killing yourself (metaphorically) in the process, and that there can be a life after chronic illness. I think all of these factors played a part in my being able to fight the denial that kept creeping up from time to time.

3. As I slowly came to terms with the idea of acceptance, I realized that not everything about my new life with FM was bad.

It’s just that the benefits in my new life aren’t always the things that are thought very highly of in our fast-paced modern society. For example, I am now a much calmer person, more patient than I used to be. But that permanently changed how my boss views me, because in academia if you’re not a highly ambitious overachiever, you might as well be nothing. But in my personal life, or even my professional life (as a teacher and a mentor), I realize the patience that I have gained has served me well. I feel, overall, more balanced in many ways than before, when I lived a lopsided workaholic world all the time. I have been able to reconnect with my husband, and feel a measure of mental peace that I never knew could be possible.

This recognition, that it’s not been all bad since FM struck, was a major leap forward towards accepting my my chronic condition.

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Seeing the forest through the trees . . .

These three major realizations, mostly arrived at through internal deliberations, were my stepping stones to a point where I could stop kidding myself that the chronic illness doesn’t exist, or that I can somehow “wish it away.” Once I had these down, the activities I described in my last post helped me work through my thoughts and feelings (many of the ones I have talked about here), which helped me inch closer every day towards embracing acceptance.

Acceptance of a chronic illness, however, is a very private matter, and can mean something different to each sufferer. So I, by no means, wish to suggest that this is a fool-proof how-to guide that should work for everyone. This is just my story. It is my hope that reading this story might trigger thoughts in someone else in a similar boat, so that they can make their own journey, taking their own private paths, towards their own personal goal of acceptance. In there, lies my satisfaction as a chronic illness blogger.

Gentle hugs,

Fibronacci

 

MORE IN THE ACCEPTANCE SERIES:
Part I: A Lesson in Perspective and Acceptance
Part II: What is “Acceptance”?
Part III: How Acceptance can lead to Happiness
Part IV (A): Seeking a State of Acceptance 
Part IV (B): Fighting the Denial of a Chronic Illness

 

READ MORE ON ACCEPTANCE AND HAPPINESS:
On Acceptance and Healing
What does it mean to be chronically ill and happy?