Tag: fibro

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

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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

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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.

Spinning my wheels with new medication

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Following a difficult summer for me, I talked to my doctor about possible medication changes. She agreed and prescribed a slightly higher dosage of one I am already taking. I have written about how difficult the switch to this particular medication was for me, but once the switch was complete I definitely felt improvement. It is this medication that I will be increasing.

Except, of course, that nothing is that easy. My doctor, who sees me monthly, has decided to prescribe this to me. But my insurance, which is a big entity that doesn’t know me beyond the data points they have collected, is refusing to cover the increase in dosage. Without insurance this medication would be $521 for a month’s supply, so there is no way I can swing it. Fibromyalgia is not life-threatening, and there is no increase in my health that would make it worth it to sacrifice almost an entire paycheck to medication.

So now I wait. It has been over a week at this point. My wonderful doctor is advocating for me and trying to get the insurance to cover it. I don’t know what I would do if I didn’t have a robust care team. At the same time, my existing prescription runs out next week, and if this isn’t sorted out by then I’ll go through some unpleasant side effects due to withdrawals, making re-starting the medication harder on my body as well.

But such is the US medical system. Somehow a private company has a say in whether I get the care my doctor prescribed. The rationale they give is that this medication is not usually given at this frequency/dosage, but that just assumes all human bodies react the same way to illness and drugs. And while that may be true in certain circumstances, fibromyalgia definitely affects people in different ways. My body reacts to these drugs in different ways.

As an anthropologist, this also highlights to me the dangers of relying on just data points to make decisions about people. On paper, my doctor prescribing this dosage for me is outside the parameters of what “should” be done, and so it makes sense to decline the request. You plug in my diagnosis and you plug in the guidelines for the medication, and you arrive at a neat conclusion based on nothing more than that. But that does not take my individual experience into account, my year of trying another drug that did nothing to help my symptoms, my body’s strange and unexpected reactions to new drugs, the knowledge I have painfully gained that any change in dosage needs to be done gradually. This prescription is of an unusual dosage because my body behaves unusually. If I could exist as anything more than depersonalized data points to some distant corporation, maybe I wouldn’t be spinning my wheels, wondering when I will be able to try something to help my new symptoms.

I’ve had some advice on ways to speed up the process or get around the hefty price. That’s not the point though. I am already exhausted living my life, I don’t have the energy to call around asking for someone to please take pity on me so I can get the care my doctor says I need.

Mental health, grad school, and fibromyalgia

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It is no secret that grad school takes a toll on grad students. Study after study show that students in graduate program have an increase in mental health issues, depression, anxiety, and feelings of isolation. A big culprit in all of these is how we, as students, are constantly pushed into having to do “more.” More research, more publishing, more service – and more writing. “You should be writing” is ubiquitous when it comes to academic memes.

Picture from Shit Academics Say

Having a chronic illness also comes with a toll on mental health. The biggest for me has been to remember what I was like before fibromyalgia showed up. I used to be able to go on runs, to have all-day reading marathons, to write out a seven-page reading response in a couple of hours before heading out to be social. No more. Everything has to be meticulously planned with rest days and contingency plans.

Therefore, this summer has been very rough on me. Having advanced to PhD candidacy (basically, all I have to do now is write my dissertation) I feel the need to work as hard as I can to collect more data. Unfortunately this has coincided with a worsening of my fibromyalgia condition. I have been in and out of flares of various intensities, my focus basically shot, managing to do the bare minimum for my work responsibilities but feeling like I am getting nowhere. This is also why I put this blog on the back burner. As much as I enjoy sharing my experiences, I have to prioritize my job, my research, and my social life.

Of course, once I write out all that I’ve managed to do this summer, I’m doing fine. Meeting with my PhD committee this week has also confirmed that I am doing fine. I am on the right track. However, my brain is still telling me I should be doing more. This constant tension between what I think I should be doing and the knowledge of my limitations is a huge downer. Focusing on the positives only works so far – at the end of the day I still have a lot of limitations to work around, and that is exhausting. But I keep on keeping on. This semester I have a plan to get more writing done, as well as a couple of conferences to network and share my research. I am cautiously optimistic that I can navigate the ups and downs of fibro and stick to my timeline of defending my dissertation in the Spring of 2021!

Victory! Officially advanced to candidacy

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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!

Choosing to disclose

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Toward the beginning of this blogging journey, I wrote a post about nailing an interview for an internship (and how that was the only thing I could stand to do that day). I am now around halfway through the internship, and throughout this time I have struggled over whether to disclose that I have fibromyalgia.

There are many considerations over whether to do it or not. They are, in no particular order:

  • I am only at this internship for 16 weeks, and only work there 10h/week
  • I can’t think of what accommodations they could give me to make my work easier
  • I don’t want to come across as though I am attention-seeking or seeking sympathy or special treatment
  • I am already exhausted thinking about having to explain to them what fibromyalgia is and how it affects me and my working abilities

On the other hand, telling them might provide some context as to why sometimes at the end of the day I am almost unable to hold a conversation (because my brain is foggy) and why I take many very short walking breaks (because I am in pain from sitting too long in the chairs they have).

I am leaning toward not disclosing in this situation, but I have similar thoughts when trying to figure out whether it is appropriate to disclose my disability in other situations. Do I need to mention it on job applications? What about academic conferences? Sometimes I need to walk with a cane because my hips are agony, and sometimes I am fine — do I disclose and then use accommodations I don’t need, and then am I stuck in having to “perform” a disability I don’t have? Do I not disclose and potentially needlessly suffer?

It was a straightforward decision with members of my PhD committee and with my work supervisors. I am around this group of people long-term so it makes sense to let them know how fibromyalgia affects my work, and to request workable accommodations from my job. But more the shorter-term things, I usually don’t have the emotional energy to advocate for myself. It doesn’t feel like a good trade-off if it’s only for a short while.

Thinking of my future self as sick

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At this point, I am very good at understanding where my energy levels are at and at not overdoing work… in the present. I am not so good at remembering that in the future, I will still be sick. And that’s a problem because a lot of academic work involves looking far into the future.

For instance, call for abstracts for conferences go out months in advance. I need to attend conferences, so I submit something, but months later when it is time for the conference, I could be in the middle of a flare.

Or, a call for book reviewers goes out, and I indicate my interest, and by the time I receive the book and have to write the review, I have three other things going on (since I still work, and am still a PhD student) and, you’ve guessed it, a fibro flare.

This is where I am currently. In March I have two conferences and a research trip, and a book review to get out before then. I also have to work on the brunt of my PhD proposal before March, because I need to schedule my defense before the end of March (!) and I will be traveling so much.

I’m not sure how so many things suddenly piled up in this one month, and I think it is because while I can see myself, in the present, as chronically ill, I can’t do that for the future. I can try to manage my workload, but fibromyalgia is always going to throw a wrench in the plans. I haven’t quite figured out how to do this. I can’t really RSVP to a conference with a “depending on whether I am flaring” condition.

Surgery and fibromyalgia

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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

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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

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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.]