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.

Victory! Officially advanced to candidacy

I’ve been quiet on the blog front lately because I was working on passing my oral comprehensive exam (that is, my prospectus defense). Big presentations are stressful in their own right, and of course stress ends up triggering some fibromyalgia symptoms. For me, it was the fatigue and brain fog, the exact symptoms you don’t want for a presentation. Thankfully I had prepared enough that I went on auto pilot and delivered a good presentation.

I feel very lucky to have mentors who have helped me tailor my dissertation research to something I can manage given my physical limits. I went through a dark period where I felt I could not complete my PhD so it is gratifying to have come this far!

My emergency fibro kit

This is a collection of things that I keep together so that I can easily bring it with me anywhere I go. It’s very small which makes it a lot more portable, but obviously does not include bigger items like my cane (which I usually still have in my bag just in case I need it).

The contents of my kit are:

  • Compression gloves [for when my hands start hurting, or when I get too cold in the office but still need to type]
  • Elbow compression sleeve [because working at a desk with a painful elbow is terrible]
  • CBD balm, lavender scented [the lavender helps with stress; at this point I’m unsure if the CBD balm helps with pain]
  • CBD vape, lavender [lavender again helps with stress; vaping CBD does seem to help with my fatigue levels]
  • Medication spares [sometimes I forget to take my medication in the morning. Having spares means I don’t have to go without for the day.]

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.

    Catching up by making the most of insomnia

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    My desk. I may be slightly unicorn obsessed.

    This was my desk at 5:45 a.m. I’ve been up since 3 a.m. You can add “insomnia” to the list of side effects I started yesterday.

    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.

    One thing a day: an interview and then nothing

    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. 

    Continue reading “One thing a day: an interview and then nothing”