Symptoms, spreadsheets, and connecting dots

December 30, 2020

When did I start feeling crappy? Was it two days ago? Last week? When’s the last time I was glutened? When did I last need to use a cane or crutches to get around my apartment? When did I adjust that medication? These things would be hard enough to remember under the best of circumstances, but add in brain fog and days on end without with the structure of a full time job and suddenly it feels impossible to remember with any accuracy. Thankfully, I have my spreadsheet.

It feels like I started the spreadsheet recently, but actually it was September 2013. (Wow, 7 years already!) I had been researching how to treat my various health conditions, and tracking symptoms and medications was recommended so strongly in multiple books that I finally gave in and did it. There are many apps that can be used, but I like my spreadsheet. Everything is in there, I don’t have to worry about an app being discontinued, it’s easy to search for any words or phrases I want, and I can use my laptop’s keyboard to type everything out (that’s much easier for me than tapping on a phone.) When I have random thoughts about things I want to add to the spreadsheet, I record them in the to-do list app on my phone, then later put them in the spreadsheet. Every morning I check my email and look at Facebook. While I’m at my computer, I update the spreadsheet. Easy. Occasionally I’ll pop in some information later in the day, too.

I started with a lot of categories which, to be honest, I never consistently used. There are some blank days, too. Interestingly, as of now (December 2020) there hasn’t been a blank day since March 2019. During the pandemic it’s easier to stay on top of this, but clearly my tracking improved long before that. Still, while blank days are less helpful, I try to remember that making notes sometimes is much better than making notes never.

So what do I record? As much as I can, here’s what I like to track:

  • The length of time I use my ASV machine each night. (An ASV is a form of CPAP machine, used to treat my sleep apnea.) Every morning when I wake up, the machine tells me how long it’s been on. This is also a fairly accurate record of how long I slept.
  • Any delays to taking my medication on a given day. Maybe I forgot. Maybe I ate a meal late and so I had to alter when I took a medication. This doesn’t usually matter, but sometimes I feel off and it helps to be able to look back and see if this was the reason. I’ll also note if I took it early for any reason, but this is rare.
  • My period, and how heavy it is that day. (I also note this in my calendar, for easy access during medical appointments.)
  • Any changes to medications or supplements. I note names of medications and supplements, doses, and times of day that I take them.
  • Any unusual symptoms, or changes in the degree of my symptoms. I’ll note if my right knee hurts one day, and what makes it worse. I’ll note if my fatigue suddenly hits me hard. I always note gastrointestinal symptoms.
  • Any other changes that I want to track. For example, I use a blue light every morning. These are commonly used to treat seasonal affective disorder (and it’s definitely helped mine!) but I use it primarily to adjust my sleep cycle. At my last appointment with my sleep specialist, I mentioned my recent difficulty going to bed at a reasonable hour each night. He suggested that I adjust when I use my blue light in the mornings, moving it earlier by a few minutes each day until I reach the target time. This is a huge struggle for me, as it means I need to get out of bed earlier. That’s not something I’m good at. So now I am writing down what time I use the blue each morning to be sure that I’m more or less on track. It’s taking me ages to move the light, but I look at my notes each morning to get encouragement that I’m moving in the right direction. I can also use it to see if the change in time (and hence a change in my sleep schedule) is impacting how I feel in other ways. Once I reach my goal, I will stop tracking this, but those notes will remain in the spreadsheet for those days. There are many things I track temporarily like this.
  • Unusual activities and overall symptoms levels. I’ll note if today felt like an especially productive day, if I was out at friend’s house all day without getting tired (pre-pandemic, of course), if I took an unusually long walk and how it made me feel, if a short walk made me tired or caused pain, if I stayed up too late the night before and how I feel as a result. I will also note outside factors, like if it’s a dark and dreary day, I will note that because it impacts my energy levels (remember the seasonal affective disorder I mentioned before? Yeah, weather is a big one) or if it’s hot out and I had to spend time outdoors then I’ll note it because that increases my inflammation levels.

As you can see, there are certain things that I track regularly, and others that I track temporarily. Some things are obvious (a change in medication) and some less so (the weather.) The key is, over time I have been figuring out what tends to impact my health and those are the things I note. This has been incredibly helpful.

Recently I was fatigued. It hit me suddenly, which was odd, but I figured maybe I’d been doing too much. I blamed my adrenal insufficiency, which was a reasonable assumption. After a few days I knew that wasn’t the issue, but didn’t know what was happening. Eventually I realized I’d been glutened. My symptom tracking showed me that the gluten explained my previously unexplainable knee swelling and the intense brain fog.

And then there was the time that I suddenly realized that I was having less brain fog. My thinking had been clearer for several days than it had been in a long time. I looked at my symptom tracking and noticed that, based on the timing, this was probably due to stopping some supplements. I had stopped taking those vitamins because they contained corn derivatives in the fillers, and I had recently decided to get more aggressive about cutting corn out of my diet, since I knew I reacted badly to it in larger quantities. It had been immediately obvious that cutting out those smaller bits of corn was helping my digestive issues, but it was only thanks to my tracking that I realized its impact on my cognition.

I could give you dozens of examples of my symptom tracking spreadsheet helping me over the years. It’s not perfect, but for me it works. Ideally I would like to track a lot more information, but I have found that when I try to do more, I get overwhelmed and end up doing nothing at all. Something is better than nothing, so for now, I will continue to do this.

This works well for me, but I know it’s not the right approach for everyone. Please share what works for you, too, because it may give others some useful ideas. Do you track your symptoms? If so, what do you track and what program do you use? What would you recommend to others? I hope that everyone who wants to track their symptoms can find an approach that works well for them.

Scaling old stigmas

December 19, 2020

CW: This post talks about weight loss and weight gain.

Weight is a fraught topic in today’s society. There, I’ve said it. We all know it, so why hide from it? In rebellion and for self-protection, I have refused to have a scale for many years. I kept track of my weight just enough to know if I needed to adjust my medications. This was easy to do when doctors weighed me at each appointment (though I don’t know why, since of of them ignored it, even when there was a sudden change.) But then Covid-19 came, and I stopped seeing doctors on a regular basis. Now I’m struggling with whether or not to buy a scale.

Image by Vidmir Raic from Pixabay

I grew up in a house of mixed messages. My parents criticized those who judged people based on their weight, yet they judged people based on their weight. I’m not sure if they were even aware they were doing it. I am aware that carry that judgement with me. “Fat” was used as an insult, and I feel judged for being overweight now.

In my teens I was diagnosed as anorexic. I had lost a lot of weight. One day I looked in the mirror and saw how thin I was. In horror, I ran to my mother for help. I told the doctors that I wasn’t trying to lose weight, but they still said that I was anorexic because I sometimes skipped a meal here or there. I did not skip meals every day, maybe a few each week. They ignored the fact that I had frequent diarrhea, cramping, and other gastrointestinal symptoms. They insisted that I eat more. By drinking high calorie shakes and eating more meals every day, I managed to gain enough weight to no longer be in danger. Then the issue was completely dropped.

Whenever I spoke about my struggle to gain weight, people told me how lucky I was. I was constantly sick, lacking nutrients, and feeling weak, and that made me lucky? No one understood the struggle. Today I need to lose weight, and that is considered socially acceptable. But why? This makes no sense.

I am a victim of society’s messaging as much as anyone else. I try hard to resist it, but that is much easier said than done. I see the thin women in tv shows and think that if only I lost weight, I would be prettier. Then I consciously remind myself that it doesn’t work that way. Still, I’m not happy about the bulge around my middle. Or the expansion of my butt and boobs, the jiggle of my underarms, my growing chin.

Like I said, one way I deal with all of this is to not weigh myself. In recent years, my weight plan has been simple: if I have gained weight and my knees and/or back are hurting more, then I need to lose weight. If my knees and back are ok, then I need to accept it. That works as long as we’re talking about a few pounds here and there. But last year, suddenly, it wasn’t just a few pounds.

I am short, so for me, 5 pounds is a big weight gain. Imagine my shock when I gained 15 pounds in just a few months! I was exercising as much (or maybe even a bit more) as before and my diet hadn’t changed. I had recently started a new medication, though. Tracking my weight was one way to determine the proper dose of that medication. We began lowering the dose, and the weight gain stopped, but it didn’t reverse. Then the pandemic started, and follow-up care was difficult. As things eased up over the summer, I was able to begin lowering the dose again. It has to be done slowly, so I lowered it a tiny bit and then waited a month. Sure enough, I seemed to be losing weight, but was it an illusion? My pants fit a bit better, but since I was wearing only stretch pants, it was hard to judge. My jeans no longer fit after last year’s big weight gain. I had planned to buy some in my new size before this winter, but that was before the pandemic started. Obviously I am not going to stores to try on clothes, so the stretchy pants will have to do. So did I really lose any weight? If I did, I think it has stopped, but it would help to know before we adjust my medication further.

The answer is obvious: buy a scale. I am not risking virus exposure to get weighed at a doctor’s office. My worry is that if I have a scale in my home, I might become fixated on the numbers. I could make a rule: weigh myself once a week and not look at it in between. But once a week seems like a lot. Maybe once a month would be better? I suspect, though, that I would be tempted to sneak a peek in between. It would be so easy to take a quick look, and to use this scale as a rare empirical measurement of my health. The problem, of course, is that weight is only one data point. Even if I lost 20 pounds (which would put me back into the “normal” range, and based on past experience, would be a good weight for me) that doesn’t mean I would be “healthy”. I would need to be careful not to try to use my scale to measure whether my health is improving. I would have to remember that health and weight are not the same thing.

On top of that, what if I begin to engage in unhealthy behaviors in order to lose weight? There are two ways to lose weight in a healthy way: exercise more or eat less. I might try to exercise more. With my joint problems and adrenal fatigue, this would likely create all sorts of problems. Yet if I’m out on a walk, it might be tempting to walk for “just a few more minutes.” And I should, right? After all, my doctors tell me to. But I know my body and I know what it needs, and what I’m doing right now works, so I shouldn’t mess with that. Still, I know myself, and I’m likely to try and push for “just a little bit more.”

As for eating less, to be honest, I don’t want to mess with food. First I had years of being sick. Then I had years of being sick and being told I had to eat more. Then I had years of being sick told it was IBS (it wasn’t.) Then I went on restrictive diets and, miracle of miracles, the gastrointestinal symptoms finally stopped! But then eating became difficult, especially when I wasn’t at home. I could not longer grab something at any random restaurant. Eating out with friends involved me researching restaurants in order to find one that had 3 items on the menu that I could eat. Food was no longer fun. I struggle to eat in ways that are healthy not only physically but mentally and emotionally. So no, I do not want to add attempts to eat less to all of that.

And that brings me back to my initial problem: needing to track my weight without paying too much attention to my weight.

Let’s face it, I’ll probably get a scale. I don’t know if I will be able to get a Covid-19 vaccine and, even if I can, it’s going to be a long time before things normalize to the point where I am regularly getting weighed at doctors’ offices. Meanwhile, I am taking my own pulse with an app on my phone, checking my hair loss and complexion in the bathroom mirror, keeping a daily symptom log, and generally doing all I can for my health. The truth is, I need to know if my weight is changing, and I can’t trust myself to eyeball it or guess based on how my pants fit. The key is that I need to learn how to not judge myself for whatever number appears there. That’s easier said than done, but I’m going to work at it.

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