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.

8 tips for surviving academic conferences with fibromyalgia

In November, I attended two academic conferences. The first was the meeting of the Association for the Study of the Worldwide African Diaspora (in Williamsburg, Virginia), and the second was the annual meeting of the American Anthropological Association (in Vancouver, British Columbia). Here is what worked for me to navigate the situation.

1.Look at the schedule ahead of time

This is something you should do anyway, but especially if you have a chronic illness. Be strategic in how you will expend your energy, because it is a limited resource. Identify sessions and workshops you absolutely do not want to miss, and then identify some that you would like to go to if your energy and pain levels allow. If there is an afternoon session you really want to go to, take it easy in the morning, so that you don’t burn out early.

2.Plan around your own presentation

If you are presenting something at the conference (paper, poster, or other performance), chances are it’s going to be the most intellectually demanding part of the conference. You have to be “on,” paying attention to your topic, to what your co-presenters are saying, and you will be engaging in intellectual discussions. I personally think this is the best part of the conference but it also takes a lot of energy out of me. I never make concrete plans on the day I am presenting. I identify a few sessions I want to go to, but do not commit to a workshop or formal meeting for that day.

3.Early panels or late receptions – but not both

Conferences are usually jam-packed with activities. For example, the earliest AAA panel starts at 8 a.m., and receptions for various groups within the organization run until 11 p.m. or later. As someone with a chronic illness, I can do one or the other — but not both. Trying to do both means that I am in too much pain and brain fog the next day to do much of anything. So again, look through the schedule and at your presentation time, and decide which is better for you to attend — the early stuff or the late stuff.

4.Build in rest times throughout the day

When you are around other people in your field who are just as passionate as you are, it is tempting to try and see everything. Figuring out dedicated rest times ahead of time can remind you to slow down and stretch your energy. For example, you can identify a coffee place close to the conference venue to just sit down with a beverage and relax. Or you could take advantage of a dedicated quiet room, if the conference happens to have one. At the Society for Applied Anthropology meeting in Portland, Oregon earlier this year, I was lucky to have a room at the conference venue itself, so I could simply go back to my room for a quick nap if I needed it. That was by far the best conference experience for me.

5.Be strategic in your networking and note-taking

Sometimes you go to a talk and really want to further connect with the speaker/author, but your brain is fried and you don’t think you could put together a coherent sentence. Jotting down the person’s name and why their work is relevant allows you to look them up later when you are in a better mental space. While running very low on energy, I ended up just jotting down the time and the room I was in, as well as a few key words for the presentation’s title. This allows me to cross-reference with the conference program later, and helps me stay in the moment so I can listen and absorb the information.

6.Use your mobility aids if you need them

This one feels like a no brainer, but it needs to be said. I struggle with using my cane at conferences because I don’t want to deal with potential questions and stigma. Or I worry that I will not look “professional.” However, there was always a point in time where I wish I had my cane with me, where my pain got to the point where walking was difficult. So just do it, regardless of what internalized ableism tells you. Your comfort and ability to enjoy the conference is more important. I have a button that says “I have fibromyalgia” that I do wear if I have my cane, so that people don’t just keep asking. The choice to disclose is of course yours, and thinking about what you want to say in advance if someone asks you about your use of a mobility aid is helpful.

7.Be mindful of how travel affects you

Even if you have a pretty good idea of what your limitations are and how you can best stretch your energy, the stress of traveling to the conference can throw a wrench in the system. As graduate students, we often have to find the cheapest flights to conferences, and that can mean many layovers, departures in the middle of the night, and the most undesirable seats. Allowing yourself time to recover from your travel before hitting the conference will help.

8.And of course, listen to your body

If you feel you need to rest, rest. That may mean changing your plans or canceling on some activities, but in the long run that is what your body needs. This is where looking ahead at the schedule helps, since you can have an idea of what you can cut out and what you really want to attend.

Surgery and fibromyalgia

There are many problems with having a chronic pain condition. The first one is that it’s hard to differentiate between regular pain and fibro pain. The second is that usual guidelines for things like recovery times are not written with you in mind.

On January 24 I had my first ever surgery to remove all four of my wisdom teeth. I was finally in a place where I could afford to see the dentist, and had known my wisdom teeth needed to come out for a while. I sought out a practice that was done for valuing patient comfort, and even though I was told my surgery would not be straightforward given the growth and position of my wisdom teeth, the dentist assured me that he was absolutely confident he could get it done and everything would be fine.

They told me patients usually can get back to work after three days, and let me tell you right now that if you have fibromyalgia, “usually” doesn’t apply to you. After a year of living with this diagnosis I was pretty confident that I would need more than just three days to recover. I talked to my doctor who confirmed that I should count on at least a week.

It was frustrating to have to try and plan my busy grad school life around a one week recovery, and I could only manage four days and then a day of working from home. What was more frustrating, though, were the myriad well-intentioned people who assured me that I would be back to normal within a few days. Drawing upon their own experiences, they knew that they hadn’t been out of commission for that long, so I shouldn’t be either. It was meant to be reassuring but it also made me angry. Assuming that my disabled body reacts the same way as your abled body just ends up putting a lot of pressure on me . Will you think I’m lazy, lying or not trying hard enough if I end up needing more time to recover?

The week following my surgery was very uncomfortable, sometimes spiking up into the agonizing… and I could not tell whether that was normal or not. Were people who had four teeth cut out of their gums (including sutures) supposed to be in this kind of pain, or was this fibromyalgia making the pain worse, or was the pain a symptom of something going terribly wrong? Did I have a dry socket necessitating a trip to the dentist for relief, or was this normal remodeling of the mouth, or was it just my body going haywire at the trauma and sending me into a severe flare?

It turned out that my healing was spectacular, to the point where the dentist appeared a little impressed at how good the incision sites looked. I told him I had been “in some bad pain” for a few days and he gently dismissed it as normal since the mouth was recovering. I don’t think he quite understood the kind of pain I was talking about, and I didn’t really see the point in explaining.

It has been 11 days since the surgery and I am still recovering. As I predicted, I did end up flaring on the Tuesday following the surgery, and still had to power through it to get myself to work on Wednesday and Thursday (Friday was a work from home day, thankfully). I am recovering from both the surgery, since my lower jaw and teeth still hurt from time to time, as well as a flare, and because I took some time off for the surgery I have work to catch up on.

The bottom line is this: if you have fibromyalgia, any kind of trauma to your body (and surgery IS a trauma) is going to be harder on you than on abled-bodied persons. You probably won’t have the luxury to take off all the time that you need. It is going to suck. Plan accordingly.

CBD self-medicating: what worked for me

I am not a doctor. Please do your own research before deciding if CBD is right for you, and talk to your doctor.

I became aware of CBD for chronic pain through an acquaintance who was kind enough to give me a small bottle of CBD tincture to try. This started me on a journey to figure out whether CBD works for me, and also to figure out the most effective way of ingesting it.

This post goes over the products I’ve tried and which ones I liked. To cut to the chase: My favorite CBD products are the vape pens from Select CBD.

(if you are new to CBD, I encourage reading this informative post on the CBD subreddit)

I tried the following products:

I review these products under the cut.

Continue reading “CBD self-medicating: what worked for me”

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.