This replica One Ring I’ve been carrying around for a better part of this year is symbolic of two things: the first is my undying love for the works of Tolkien, and the second is the different kind of burden I’ve been carrying. The fact that this is genuinely symbolic for me is, in itself, emblematic of my geekiness, but that’s beside the point.
Those of you who follow me on Twitter will know what this post is about, while those of you who have been following my blog since last year will be feeling a sense of déjà vu. I’m frustrated to report that these two periods of absence are related. Let me start at the beginning.
Following my confirmation in late February, I was preparing to present a colloquium (a short talk on a topic unrelated to my own research) to the School of Chemistry at the University of Melbourne. I also picked up a social media management job at the Royal Australian Chemical Institute, the role of president at a newly established cross-institution Young Chemists’ Group, increased my ballet dancing to two classes a week and adopted a cat. This seems like a lot to have had on my plate at once, but after recovering from my intense bout of glandular fever last year, I felt superhuman. My energy levels were through the roof, and I was determined to make up for those months spent juggling illness and PhD studies last year.
Perhaps it’s no surprise that I started slipping. At first, I started spending my weekends mostly asleep. I’d sleep 12-14 hours a night and often have up to a 3-hour nap during the day. I’d complain to my mother, a former nurse, about how I felt sick without having “any real symptoms.” I often felt disoriented during the day, and began struggling with word recollection — I even had trouble remembering names of people I’d encounter several times a week. I stopped dismissing these as side-effects of simple tiredness when, during a ballet class, I had to sway off the dance floor and lie down to avoid fainting. I went to see a doctor. Blood tests came back negative. He said to come back if I started feeling worse.
It became obvious to everyone that I was ill. I couldn’t go to the university on consecutive days: one day I would work, then sleep for two. I started feeling more lethargic, more confused, more dizzy. I stopped attending ballet, relinquished my presidency and had to return the cat to his foster carer. I missed meetings and appointments. I saw two other doctors. More blood tests and a chest X-ray came back negative. By this point, it was late April. My “diagnosis of exclusion,” as the third doctor put it, was chronic fatigue syndrome (CFS). It’s common for it to follow from a viral infection like glandular fever, he said, but uncommon for it to skip a couple of months like mine did. My symptoms fit all the diagnostic criteria.
My extremely supportive supervisor and I decided that the best course of action for me would be to take sick leave from June to August, inclusive. I was prepared to live on my savings, but to my delight, the scholarship department approved paid sick leave for almost the entire duration. I’d like to use this space to thank the University of Melbourne for its support of the sufferer of a still poorly-understood condition.
Recovery has been frustratingly slow, not the least because there is no medication or readily available treatment. I’m not a patient person by nature, but this illness has forced patience upon me. CFS, in my experience, isn’t something you can fight; it fights back. You try to push through it, to expand your limits, and you suffer the payback — if not immediately, then the following day. Really, this illness feels almost like it was crafted to make me do the absolute opposite of what I instinctively want to do. It’s the anti-me.
This is accurate also because my experience of CFS is primarily neurological. I still maintain that I have never felt exhaustion like I did during my bout of glandular fever last year, and yet, I am now less equipped to deal with the lethargy that I do feel. I often feel defeated by my illness. I need someone to tear me out of bed in the morning, or I will sleep until I’m good and ready. I’m often irrationally emotional and disoriented. My writing might feel different to read because of my difficulty to concentrate and access my mental faculties; my word recollection is still impaired, alongside my general memory. I struggle to keep on top of plans for more than a day in advance.
I’ve caught myself wishing that instead of CFS, I had an “actual physical illness.” I would wish that there was a pill I could take, or a treatment I could attend. And then I’d just feel guilty, because I can’t imagine how many people would wish what they had was as relatively benign as CFS. I’d feel guilty, because my father, a stage 4 bowel cancer survivor (in remission for over four years), would pity me and tell me that he understands how chronic illness feels. He also seems to believe that I will be better and stronger for this experience.
I have not yet had and aren’t convinced I will have some sort of illness-related epiphany. I do acknowledge that thanks to CFS, for the first time since basically the beginning of high school, I’ve been able to focus solely on what I and my body need. I’ve been able to remember how much I love spending time outside, instead of simply using that space beyond my front door as a gateway from where I am to where I need to go. I remember that research is attractive to me because I love doing things with my hands, from knitting to gardening. I get to enjoy the numerous wonderful doggies that people in my area take out on walks in the afternoon and I am occasionally privileged enough to get to pet. Currently, I don’t view these things as an equal exchange for my suffering, but my perspective may change with time. I don’t know if I’ll now magically become a better-adjusted person with a more balanced view of work and life. I’m skeptical, but I guess we’ll see.
Without doubt, I’m doing much better than I was at the beginning of my sick leave. I’m starting to feel more like myself, and my endurance of physical and mental exertion is increasing. I’m optimistic that within a couple more months, I’ll be back to normal. My supervisor continues to be supportive and has approved my plan to return to my studies part-time until the end of the year. I am wary of stories that recount people with CFS relapsing as they return to their normal lives after the worst is over, so I’ll have to remain diligent about not over-exerting myself.
It’s been a rocky start to my PhD studies for sure. I’m glad I’m not particularly superstitious, because if I were, I might have already walked away. Even so, I fear there may be a limit to the hardship I’ll endure. Here is to hoping my limits aren’t tested.
Thank you for reading this post. I’d like to offer a special thanks to all of my wonderful Tweeps who have supported me this year. If you or someone you know are suffering from CFS, please feel free to contact me to exchange stories. I found sharing experiences extremely helpful, since finding medical support was such an uphill struggle. As always, I can be contacted in the comments, by e-mail at firstname.lastname@example.org, and on Twitter as @Lady_Beaker.