I was officially diagnosed with fibromyalgia on November 27, 2017. It was the culmination of a long semester full of frustration and self-loathing. In many ways getting the diagnosis was just the start of the journey, since now that I knew what I had, I had to figure out how to manage it. I feel that I am finally making headway on that, over a year later.
This picture was taken on the day of my diagnosis at the doctor’s office while waiting for the rheumatologist to come in. I was wearing a full face of make up and a professional-looking dress. I look at that picture and I try to find evidence of how incredibly exhausted I felt. Of course there’s really nothing there, because fibromyalgia is an invisible illness. There was really nothing wrong with me except an unrelenting fatigue, a fatigue that no amount of sleep would conquer, a fatigue that usually put me out of commission by mid-morning every day. My mind was foggy and I could hardly comprehend the work that was in front of me. The field work I had to do sapped all the energy out of me and my brain felt like it was filled with thick cotton. But there was nothing wrong with me, so I pushed and pushed and pushed through until something had to give.
On Saturday, I went hiking, and I survived. It was a nice morning hike of about 4.5 miles.
I’ve always loved hiking and the outdoors, but finding time and energy to venture there definitely takes a back seat to finishing all necessary graduate school activities, making sure everything is taken care of for work, and of course the unrelenting Arizona heat when you DO end up having some free time in the summer. And that’s before you have to factor in the limitations imposed by fibromyalgia.
Despite worrying that I would not be able to finish the hike or that the exercise would trigger a flare, it was a wonderful experience, helped by the following:
Travel as light as you can. My wonderful boyfriend Marc suggested we take only one bag with water and snacks for the both of us, and it made a big difference not to have to carry extra weight. Especially when going uphill.
Get a good night’s rest prior. Make the odds in your favor by having a quiet evening and an early night before heading out to hike. Since having a good night’s sleep is hit or miss with fibromyalgia, consider rescheduling your hike if it’s a day where you just couldn’t get enough sleep.
Take as many breaks as you need. I was worried that Marc would get frustrated if I stopped too often, but taking breaks to catch my breath and gently stretched allowed me to go further than I thought I would be able to.
Listen to your body. If after catching your breath you feel you are starting to get worn out, turn back! Pushing through an upcoming bout of fibro-related tiredness is one of the best way to trigger a flare. Although, that said…
There is some pain you’ll just have to push through. This may be an unpopular piece of advice but hear me out. There is some underlying fibro pain that just is going to be there regardless. When we started hiking my knees started aching within half a mile, and for some reason my wrists (???) started aching too. However they were the kind of dull, fibro-just-hates-me pains, so I decided to push through and enjoy my hike anyway. And I did.
Enjoy the achievement. 4.5 miles is not that long for me compared to what I used to be able to do, but I managed it; I told fibro to go eff itself and had a wonderful time with Marc, enjoying the beauty of the Arizona desert. And it felt GOOD.
Take the rest of the day off. I had grand plans of doing grad school work in the afternoon but my brain just wasn’t into it. Running errands (groceries) for the week was almost more than I could handle. It’s best to think of hiking as something that will take your whole day or even your whole weekend, that way, you don’t end up panicking because you’ve fallen behind for school or work.
I want to go for another hike soon, and perhaps go longer. This particular hike was a little challenging because there was quite a bit of climbing up and down and scrambling over rocks, but it makes the achievement even better! With fibromyalgia, it’s important to make all the little victories count.
Grad school is HARD. For years, you are constantly asked to prove to the people around you that you are worth being there. Give yourself some credit to be doing this difficult thing even with a chronic illness.
Being forced to take an alternative route to achieve the same research could lead discovering new methods or at least refining existing ones. There is a place for you in academia.
Find your support group. Find people who can share wisdom and who can use yours. It’s even better if they’re not just grad school friends. It’s good to take a step back and see the bigger picture away from academia.
These were the biggest takeaways from a wonderful committee member following a meeting. Story below the cut.
When I was diagnosed, I had been with Marc for about 6 months. Our relationship had gotten to a kind of weird funk because of fibro, to the point where he told me that I seemed like I just did not want to have conversations with him anymore (not true, of course — I just did not have the energy to hold in-depth conversations, being barely able to comprehend simple questions like “how was your day?”). Getting a diagnosis was both a relief and terrifying. I had an explanation for what was going on with me, but something was actually wrong with me.
Marc’s reaction was fantastic – he asked me how he could best support me and make my life easier. Reactions from my closer friends – the ones who knew that I was struggling with a slew of symptoms that got no relief – ranged from being grateful that I finally had an answer to wondering what exactly fibromyalgia is.
The reaction from my professors was overwhelmingly positive too. All of them told me to take time to process my new diagnosis and to take care of myself. Even though I had medical documentation that I could offer as proof, I had established a good enough relationship with them that they took me at face value and didn’t question the authenticity of my diagnosis.
The real issues don’t stem from telling people your diagnosis — they rear up in the aftermath, when you are trying to adjust to life with fibromyalgia.
When the main symptom of your condition is just “pain,” doing things like getting up and on to work feels impossible on bad days. Today is a bad day for me. The only way I am getting any relief from the pain in my legs is my reclining under my weighted blanket, and I am unsteady on my feet.
I am incredibly lucky to have a supportive work environment and supervisors who allow me to work from home when needed. I filed the necessary paperwork to receive ADA (Americans with Disabilities Act) accommodations, which include a set number of hours where I am allowed to work from home, but sometimes I need to call in for my regularly scheduled office time.
Having a supportive work environment makes all the difference. I have shown them that I will get my work done even when I am not feeling well, but I also work in a place which values taking care of yourself and not burning out due to work. I am scared that once my contract is over, I will not have such understanding supervisors.
I can do work. I can do good work. But if my worth is measured in how well I can conform to sitting in an office for set hours, as the majority of work situations are set up, I just cannot perform. I take the moments of clarity when they come, and I can meet all deadlines, but I must do it my way.
However, I only feel regular-sleep-deprived tired instead of fibro-fog tired, so I am using the opportunity to catch up on work I did not do this weekend with the help of my Chibi Star Trek cup filled with delicious Mauritian tea.
It’s not an ideal state of mind to delve into citizenship theory, but it’s better than nothing. I’ve learned to take the moments of clarity where I can find them.
On the morning of Wednesday October 24th, I had a meeting for an internship at a museum. I had contacted the person responsible, exchanged some emails as to what sort of internship I wanted, and was told that they were excited to meet with me to talk about a mutually beneficial arrangement.
So far so good, except this week has been particularly difficult in terms of fibro fog *.
The previous night, I had to cancel a date with Marc because I was so overwhelmingly fatigued that I could barely form sentences. I had gone to sleep early, had a fitful night, woke up with a splitting headache, and faced the prospect of an interview for a position I was genuinely excited about.
That’s one of the (many) frustrating things about fibromyalgia. It robs you of the ability to fully get excited about something, to deeply delve in what you are passionate about.