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.
First off, I am annoyed. I am unable to function well enough today to focus on anything, and so the pile of books I need to for my pre-dissertation work remains untouched. I also have many articles logged away in my citation manager, and it feels awful to KNOW I need to work but my mind just feels frayed, like there is a lack of connection between my two brain hemisphere. The most I could do today was finish up and submit an assignment for an online class.
It’s been almost a year since my diagnosis, and while medication and my own supplementing coupled with lifestyle changes have helped some, my doctor thinks I should be able to make better progress (and I agree! Being debilitatingly tired most of the time is not fun, especially when going through a rigorous academic program).
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.
The pressure of the frames on my ears and my skull is too much, and so they are sitting on the desk in front of me. I am squinting hard at the computer screen to make out the words I am typing, as my eyesight is… not good. I need those glasses. Yet putting them on causes me so much pain that any tenuous thought I could otherwise grab on to just escapes me.
Hello, my name is Rachel and I have fibromyalgia. On good days it just feels like I didn’t sleep enough and maybe overdid it slightly at the gym. On bad days I can’t even think and the pain makes it impossible to move. Despite all this, I am determined to finish my Ph.D. in anthropology at Arizona State University while still maintaining a good life balance with my friends and significant other, Marc.
I will be using this blog to chronicle what it’s like as an academic with fibromyalgia. While academia is the primary focus of my life currently, fibromyalgia of course affects all aspects of my life, so this will be mirrored here as well.