How Not to Track Symptoms, and Why, and When to Do It Anyway

and why I hate the question "How are you feeling?"

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I've frequently been sick, in mundane and weird ways, my whole life — but it didn’t get super extra weird and scary until 2005. I’ll go into all that soon, but now I want to talk about a period about 6-7 years into it, when I was living in Brooklyn with a toddler who went to daycare, and how I started to learn about tracking symptoms and why not to and when to anyway.

As my kid was starting group daycare, I had another neurodegenerative flare of what what had been diagnosed as multiple sclerosis but over that period was changed to diagnosis of neuromyelitis optica (NMO). (I’ll get into it some other time, but you will google it and it is a lot, and I will tell you now that I had unusually mild-to-moderate flares, but it still rocked my world.

When kids start daycare or school, their immune systems start school as well — learning about a lot of viruses and bacteria as the kids sick. So they get sick a lot.

And thus they can get other family members sick as well. Often, the older kids and adults have immune systems that already learned about those bugs in their own early years, so they don’t get sick or get a mild course of it. But in online information about common childhood illnesses, it often explains something like this:

Fifth disease is a viral disease that often results in a red rash on the arms, legs, and cheeks. For this reason, it’s also known as “slapped cheek disease.”

It’s fairly common and mild in most children. It can be more severe for pregnant women or anyone with a compromised immune system — Healthline

So, when my kid got fifth disease and coxsackie and strep throat, I got fifth disease and coxsackie and strep throat.

That was on top of getting and recovering from an NMO flare, which meant, in summary, I felt like shit a lot. It felt like mono — months of deep fatigue and feeling like shit — plus digestive woes and pain from steroids and antibiotics, and and and and…

I was working from home at a thankfully-not-super-demanding job (for which I am incredibly grateful, and which I know is rare and not unrelated to race and class privilege).

But it felt like I was spending most of my time and energy being sick, and the job was feeling like too much, even as flexible as it was.

“How are you feeling?”

It was also realizing just how much I hate the question How are you feeling.

Every time a person asked me that question, I had to feel how I was feeling.

It didn’t matter if they really just wanted me to say “fine” or “better” or “not great.” I still found myself doing a scan of myself and my woes and my concerns and my fears. That wasn’t necessarily something I wanted to do at any given moment, especially not dozens of times a day.

I will say here that that high quantity of people asking me that dozens of times a day thing had also a great deal to do with those months of high-dose steroids… I couldn’t sleep much, and would be up at 3 am sending long emails to many, many people with the details of my health challenges and quests for answers. Also, when I was trying to get on the rituximab (brand name Rituxin, price tag $7,000/infusion once or twice a year), I was rejected several times by insurance and was getting lots of people to call on my behalf, so people knew that there was a lot going on.

But who was the #1 source of the “how are you feeling” question?

Me!

Every day brought a different combination of physical, cognitive and emotional symptoms. I felt like I spent the early part of the day trying to get a sense of what the hell I was experiencing that day, and the latter half trying to manage it.

And what I was doing was right in line with the advice of learning how to cope with chronic conditions - symptoms tracking.

In some cases, I could do something about the symptoms, like take pain medication. But also, I knew that rebound pain is a thing, so I was also constantly evaluating and re-evaluating if/when/what I should be doing for pain treatment.

A fair amount of what I was feeling was a consequence of the treatment I was talking — especially the steroids — to try to prevent further flares and permanent consequences, so it’s not like I was going to be able to just drop the treatment to address those symptoms, anyway.

The situation was further complicated by random factors — like a basic over-the-counter allergy medication I put myself on, after reading that it was being considered as perhaps protective in NMO, but which turned out to be making my fatigue much worse.

And in some cases, I needed to do something:

It was not at all clear if and when I would have another flare of NMO, and if I got symptoms that seemed like it may be happening, I needed to get MRIs and go on IV steroids as soon as possible. So it was not overblowing it to be keeping an eye on things.

But it was a lot.

Focusing on symptoms means focusing on symptoms

A few years into this, I started asking my providers about what it would take to get approved for long-term disability benefits, as my employer had an unusually good plan where I could get something like 70% of my salary.

That’s when I learned that pernicious, intangible, “hard to measure” symptoms like pain and fatigue, are not often accepted as “enough” to get approved, and I wouldn’t have much of a shot at it.

Also, my providers started asking me if I was depressed.

I said, “yes, I am depressed about feeling like shit all the time, and I can’t keep working, and I want to get on disability benefits."

And then they gave me the quick assessment they do to score depression, and I ranked severely depressed.

I agreed to try medication. I went on Wellbutrin and immediately had more energy. And like clockwork, 7 weeks later, I woke up saying “I feel like myself, like I haven’t felt in years.”

Change and not

Some of my symptoms got much better, and some of them didn’t.

I had a baseline of not feeling awful about everything I was feeling, and found that I was no longer was spending much of the day figuring out how I was feeling, and figuring out how I felt about it and what I wanted to do about it.

This isn’t meant to oversimplify or pass judgement on the complicated topics of disability benefits for invisible or episodic disability, or to be a booster for antidepressants for all situations of people feeling like shit at all times.

In my case, I went off the Wellbutrin in a year or so, and retained the knowledge I’d gained about myself and my situation from having been on it - and then found myself super depressed again about a year ago, and went back on. I’m planning on dose titrating in the spring to see what it’s like being off it.)

Here’s what I learned: Most of my symptoms didn’t matter.

It’s not that they don’t have an incredible impact on my day-to-day functioning. It’s not that they aren’t absolutely unpleasant and contributing to misery and grief in my life.

But they are going to be there, for the most part, whether I focus on them or not. And focusing on them meant I was focusing on them. And to what end?

Here’s what I learned to do instead:

  • I found out what the red flags were. What were the signs that I needed to go to urgent care, the emergency room, or make appointment with my primary provider? What distinguished symptoms that could be a new flare of NMO from the aftermath of previous flares? How sick of what types of sick could I be before getting checked out for sinus infection or UTI?

  • I resisted asking myself how I was feeling and substituted routines instead. Instead of laying in bed assessing myself when I woke up, I would get up and have tea. I would take the first steps of my day, delaying that assessment as long as possible. And I came to find that sometimes that assessment just didn’t happen.

  • I tried not to overthink things when I wanted to address a symptom, and just accept my decisions about what to do. For example: If I started feeling escalating pain, I would take treatment for it, without belaboring whether it was the right timing or truly necessary, as I knew that the best time to take pain meds is early in a pain cycle. And if it felt like a non-escalating, non-debilitating pain, I would listen to guided visualization audio that was specifically about pain, or just try to go ahead with my day, because I also know that rebound pain from taking pain meds is also real. Most importantly, I would do my very best to not judge myself for the decision I’d made, and not be in my head making and remaking that decision over and over.

  • I got one provider to have one master list of my drugs and look at all the interactions. This didn’t mean that side effects were eliminated, but it meant my provider was able to follow the thread and help me investigate what may be contributing to what symptoms, and what drugs I needed to be on and what I could get off of.

  • I would make a note rather than dive in. I learned to just jot down some symptom I’d notice and have concerns about, and stop myself from spiraling into tons of research online or analysis about what to do. I had one list when I was being an organized version of me, and lots of little notes here and there when I wasn’t. But the key seems to be to get it out of me and down on paper or digitally, as briefly as possible, and then move on. I’d look at the notes before going to a provider appointment.

  • I found other ways to deal with my anxiety. I’ll write much more on this, but I see how anxiety is a drive in me that wants to have a home. So it will land on symptoms, or my relationships, or the world (lots to go on there…). I dove into my 12-step program work — it has been the.most.effective.thing for anxiety I have every tried, it is free, there are tons of meetings that I can go or not go to… And I taught myself to dive below my symptom tracking — to connect to the deeper fears about loss of functioning, grief, etc.

And perhaps most importantly, time passed and I was starting to accept that I was going to always feel some kind of thing.

It definitely helped that I never had another NMO flare, and over time I became less scared that it could happen at any moment. And my kid’s immune system had learned a whole lot and the pace of her getting new illnesses had slowed down some.

But also, I was letting go of feeling like I was going to go back to an earlier time in my life, when I was often sick but it wasn’t as central in my life, and when I didn’t have things like permanently numb feet or so many medications.

I was learning that I could live as I was, without trying to fundamentally change what couldn’t be changed.

This winter, I’m at another point where it makes sense to track symptoms again:

  • I am trying different approaches as far as my food and nutrition strategies.

  • I am changing some of my meds and supplements.

  • I have an awesome air filter that makes delicious background noise all night and I’m sleeping more hours because of it (!)

  • I have a really pernicious neck problem (that also brings migraines, queasiness, an more) that appeared in the last year and has gotten much worse, and I need to determine if it’s from an underlying problem that could be a fundamental driver of my fatigue, pain and vulnerability to infections.

But I have no patience for asking myself “how I am feeling all day” long about all this. Here is what I’m doing (I’m sure there’s other measures I am doing that’s more automatic at this point, but I’ll let you know if/when I notice them.)

  • I have one note in Evernote (which syncs from laptop to phone) where I keep observations and questions for my providers.

  • I’m going to do an inventory of myself, head to toe and inside out, as a baseline for where I’m at in January 2020.

  • I made a list of tests and providers that may be able to help with the most vexing problems I’m having and chose the top 3 things to pursue.

  • I went on disability leave from the Park Slope Food Coop even though I love my work shift there.

  • I’m typing even when it hurts, because my body is going to hurt when I use it and when I don’t use it, and I want to write this book.

And then I’m going to do my best to let it all go and go ahead with life as it is.

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