I Have Fibromyalgia and Sometimes it Makes Me Miserable
Having a chronic illness is awful, especially if it’s mostly invisible, and you feel awkward telling people about it. Sometimes it's much easier to tell people "hey I can't make it out to your thing I have a different thing..." or "Can we reschedule, something came up suddenly." Most people take that at face value, which I appreciate...despite how vague it is.
At the moment I'm tired of being vague, I'd rather be honest.
The photos throughout this post are a collaboration between myself and Empyreal Images. (Their work is beautiful please go check it out.)
The goal of this series was to show the despair, isolation, and emotional rollercoaster that tags onto struggles with chronic illness, whether they be physical or mental.
My struggle is a bit of both, and it goes back quite a ways.
I was 19 the first time I contracted mono. It came seemingly out of nowhere the June after my first year of college. It was the worst timing imaginable.
For months I been planning on going to China, Mongolia, and South Korea on a school trip. I had already spent $2,500 on the transportation costs and Chinese Visa…all non-refundable, of course. I even thought that going would still be feasible even if I was afflicted with Epstein-Barr (the doctor even told me that it was ok, but then again, he was an idiot) – that was until my tongue turned black and I couldn’t stop vomiting and had to go to the ER.
That was only the beginning.
I spent my days staring at the ceiling fan, hallucinating. A month went by, two months, three months…summer was a long day strung together. I was also in Florida for the duration, so all I remember was heat, watching Mary Poppins over and over again, and then the one time I drank an entire bottle of vermouth because I was so tired of feeling anything.
Naturally that last experiment didn’t turn out in my favor.
And then in a blink it was August I had to go back to school in Virginia. Back to being an NCAA athlete and classes and humans my own age, despite still being incredibly unwell.
The first day back I met with my coach, who, seeing how weak I was, suggested that I come to practice anyways and “see how I did.”
I did not do well. Fortunately he felt a uncharacteristic degree of mercy that day, and he told me to take my time getting back into it. More months crawled by. I spent a significant amount of time in bed. I wasn’t able to play until December, and even then things were…difficult. The problem was, I was on scholarship, and I couldn’t just quit playing.
“We could red shirt you for the year,” He offered. Red shirting meant a player would sit out for a year so that they would have an additional year of eligibility, which meant that instead of graduation in four years like I had planned, I would graduate in five…just so I could have another year of playing tennis.
Considering how much I hated it (read that story here), that was akin to death.
“I’ll be ready by spring.” I answered quickly.
Once I was strong enough to live my life in subnormality, as in I didn’t feel like sleeping all the time (just most of it). I started training again. Unfortunately my body didn’t embrace this choice. After Christmas break, in quick succession I caught strep throat, bronchitis, and then developed a sinus infection that would last well into the spring semester.
Still, I played through it. I played through everything. No one was going to make me stay for a fifth year.
The Pattern Continues
No matter what I did, I never became fully healthy. I would sleep 12-13 hours every night (if I had the opportunity between classes, tournaments, and training) and wake up feeling exhausted. Every illness that went around school, I caught. I also developed chronic cystitis, and couldn’t control my bladder every time the team went for a run. I took to wearing sweatpants year round.
Fun times, really.
I caught mono the second time the last semester of my Senior year. The athletic trainer, Aaron, had told me that there was no way that I had caught it twice, and begrudgingly sent me off to the doctor to have blood work done (Aaron was an asshole).
It's also important to note that we had a match the next day with another team in our conference, and I was the #1 player. A lot was expected of me.
On the way to Spartansburg, VA, the bus stopped to get gas and my coach pulled me aside.
“So I have to tell you something.”
I nodded, expectantly.
“I got a call before we left, you tested positive for mono. I didn’t want to tell you before we left because the girls really need you today. How are you feeling, do you think you can play?”
I just looked at him, feeling nothing.
“I guess you can decide when we get there.”
Fortunately I graduated that spring and never had to pick up a racket again. Yet, my body was an absolute mess, as was my mind.
Changes, but Not the Right Kind
After quitting tennis, I tried to instill patterns of health and wellness. I took up Yoga, spent a summer in Charleston, SC doing nothing more strenuous than occasional temp work just trying to heal. I was always tired…and somedays I would have random shooting pains in my joints that would leave me sobbing. I was also terribly depressed. My boyfriend at the time didn’t know what he could do for me, but he really tried…looking back now, I know that he couldn’t have done much.
If I had known what I had then, maybe I’d still be with him now. Maybe then I would have realized why I was so unhappy, and that it had little to do with him. Oh well.
As the months went by the cystitis was only getting worse. Also, period cramps left me debilitated for days on end. I didn’t have health insurance so seeing a doctor, or even a therapist, wasn’t a possibility.
I ate Advil like candy.
In September of 2011 I moved to Boston for grad school, and by that point I had become accustomed to the rollercoaster my body would take me on. Happy days were few and far between, misery days were frequent.
Yet, even knowing all this I still hadn’t learned to actually take care of myself…and immediately fell back into overworking. On days where I wasn’t in class, I was working counter staff at one of the busiest bakeries in Boston.
I was lonely, miserable, and constantly in pain.
Years went by like this, although I eventually managed to get rid of the loneliness, thanks to the dozens of supremely wonderful humans who have just been there for me.
The Diagnosis I Never Wanted
Due to the controversial miracle that is Obamacare, just this past January (after 6 years of just dealing with how my body and mind felt) I finally got health insurance. As a result of this, I was able to see a gynecologist and find a PCP I trusted. Turns out that I had endometriosis, which had a lot to do with the cystitis, and both could be treated and cured.
Furthermore, I also had Fibromyalgia – treatable, but not curable.
For those who don’t know, Fibromyalgia is a chronic disorder characterized by widespread musculoskeletal pain, fatigue, and tenderness in certain areas. No one is quite certain about what causes it, although many theories point to these elements:
- Stressful or traumatic events
- Repetitive Injuries
- Infections (e.g. Epstein-Barr or Lyme Disease)
No one is quite certain, and a lot of the science around it is speculative.
What ultimately happens is that my brain isn’t producing quite enough serotonin to keep my standard pain blockers happy. As many of you know, serotonin is also the happy neurotransmitter, and shortages also lead to high levels of anxiety and severe bouts of depression.
More than anything, it just makes me tired.
How to Deal
There is no cure for Fibro…my PCP recommended that I see a therapist, which I’ve been doing. It’s also important that I make sure to get enough vitamin D (because I’m more prone to depressive episodes – hooray seasonal affective disorder) and vitamin B12 (because my nerves are, well, angry).
So a lot of my life is designed around managing my illness. I am fortunate enough to have a life now where I can create my own schedule – picking up photography was apparently one of the wisest things I could have done for myself. Yet, there are many days where I just can’t do the whole adult life thing. I'd rather stay in bed.
One of the biggest problems with Fibro is the brain fog. Some days, my ability to recall and sort information is severely stunted, so I’ve taken to keeping meticulous notes about everything. People’s names, books I’ve read, what I eat for snacks…the point is to keep track of things that may be needed later on (also some foods trigger Fibro flare ups, so now I actually am tracking everything I eat…it’s annoying but necessary).
Cold, rainy (or snowy) days are the worst. Even people in perfect health can be down in the dumps when the sun doesn’t come out for a few days, so for me it’s not a pleasant experience. Everything just aches and I can’t get warm (even when the heat is cranked) and I usually want to go to bed around 8pm, even if I haven’t even been awake for twelve hours.
Figuring out what my body wants and needs is a daily adventure, and many things I just don’t question anymore. I don’t schedule meetings before 9:30 AM (I’m usually up at 6:30 or 7:00, but it takes me a while to start functioning normally), and I don’t often go out after 9:00PM (I can fall asleep anywhere and frequently do, my body shuts down without my permission).
So that gives me about 12 hours of daytime, which I try to use to my advantage. I run my own business, which allows me to create my own schedule, but if I don’t work…I can’t pay rent or buy groceries. Too many bad days in a row causes problems. Or it used to.
A few weeks ago I learned something that has changed my life, and it helps me to stay afloat even on my worst days. I’m going to direct pull from Tim Ferriss’s blog, because paraphrasing would ruin the experience:
“Most “superheroes” are nothing of the sort. They’re weird, neurotic creatures who do big things DESPITE lots of self-defeating habits and self-talk.
“Personally, I suck at efficiency (doing things quickly). Here’s my coping mechanism and 8-step process for maximizing efficacy (doing the right things):
1) Wake up at least 1 hour before you have to be at a computer screen. E-mail is the mind killer.
2) Make a cup of tea (I like pu-erh) and sit down with a pen/pencil and paper.
3) Write down the 3-5 things — and no more — that are making you most anxious or uncomfortable. They’re often things that have been punted from one day’s to-do list to the next, to the next, to the next, and so on. Most important usually = most uncomfortable, with some chance of rejection or conflict.
4) For each item, ask yourself:
– “If this were the only thing I accomplished today, would I be satisfied with my day?”
– “Will moving this forward make all the other to-do’s unimportant or easier to knock off later?”
5) Look only at the items you’ve answered “yes” to for at least one of these questions.
6) Block out at 2-3 hours to focus on ONE of them for today. Let the rest of the urgent but less important stuff slide. It will still be there tomorrow.
7) TO BE CLEAR: Block out at 2-3 HOURS to focus on ONE of them for today. This is ONE BLOCK OF TIME. Cobbling together 10 minutes here and there to add up to 120 minutes does not work.
8) If you get distracted or start procrastinating, don’t freak out and downward spiral; just gently come back to your ONE to-do.
One thing per day, that’s it. And somehow day by day, I get by. Because when I have good days, I can do a lot more than one thing, and I feel pretty good about myself as a result of it.
Not quite like a superhero, but a little more like a human, certainly.
© 2015 Joey Phoenix, Inc.