Keeping track: how to manage everything when your mind is no help

For me, the biggest issue that fibromyalgia brings is the brain fog and forgetfulness. I’ve always had a great memory pre-diagnosis, so not being able to remember names, dates, appointments, or other sorts of information is incredibly frustrating.

Right now I am in the process of data collection for my dissertation, which means interviewing people. That means even more tracking and planning things, on top of balancing my social life and work. There are a lot of moving parts. Here are the things I use to help keep me organized.

1.Google Calendar

A very simple tool and yet oh-so-powerful! My boyfriend Marc has a great habit of always looking at his calendar before agreeing to plans, and that is a habit I try to have as well. The key to this one is to add an event to it the moment you agree to it. If you forget to do it as soon as you agree to it, there’s a 50/50 chance you will forget all about it, and then get irate emails.

2. Paper to-do lists

I do this as part of my bullet journaling, which is a “bare bones” approach and not the artsy stuff you find if you just Google “bullet journal.” I basically write down things I need to do as soon as they occur to me, and if I don’t get to them on that day I move them over to my list the next day. This works for me because I don’t really get anxiety from having unchecked items on my to-do list, AND I also really like checking things off from said list. Handwriting everything also helps it stick in my brain, so I find I don’t have to refer to the list as often.

3. Trello Boards

I use this online planning tool mainly for papers or projects that have a group component. It does have a multiuser functionality but I have only ever used it individually. It helps me to have an outline of all the tasks needed to get a project from start to finish. It was especially valuable during my research assistantship (which in the summer 2019), where I was the first author on a paper with many co-authors, each with specific tasks and deadlines.

4. Medisafe

Not directly task-related, but as a fibromyalgia sufferer I have a lot of pills to take everyday – some are prescription drugs and others are simply supplement. This app helps me keep track of which medication I should take and when. It reminds me to take them, too, and has saved me many times when I was so absorbed in a reading or other task that I would have completely forgotten otherwise. I don’t use all of its functionalities (because I don’t have the patience to set it all up) but this is very powerful for me.

5. Learning to say no

Alright, this is a bit of a cop-out on this list, but it is a good tool to have. It is a lot easier to keep track of everything if you haven’t over-committed yourself and bitten off more than you can chew. Good work-life balance is critical in grad school anyway, but with a chronic illness it is vital. In the long run, having enough time to recover from work consistently will mean being much better at dealing with the workload. Better work consistently every day than push yourself hard for a few days and then burn out.

Hiking with Fibro

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.

    Reclaiming a lost year: words of wisdom from my committee member

    • 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.

    Continue reading “Reclaiming a lost year: words of wisdom from my committee member”