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.


Staying busy while stuck in isolation

September 14, 2020

One thing about life with disabling chronic illnesses is that I was better prepared than most for life at home. After all, so often I am stuck at home due to my health, or I need to do stay home in order to rest up so that I can go out later on. A lot of my hobbies and interests are sedentary ones, thanks to my health, so the transition was easy in that regard. The social part is difficult, of course, but staying busy is easy. In fact, I don’t even have time to get everything done!

Meanwhile, most people I know who weren’t working full time from home and didn’t have young children at home were at a loss as to how to stay busy. As things opened up, many of them found adventures outdoors. I am still staying home, though. I would not go anyplace indoors or around other people. I do not feel that is safe in my area. As for outdoor adventures, I have no one to go on an adventure with. I live alone, and there is no one I am comfortable being in contact with right now, unfortunately. A picnic alone might be safe, but it’s lonely. A walk in the woods where people are around isn’t safe, and walking with no one around at all doesn’t feel smart. I would love to see the ocean, but I can’t drive that far right now, and I can not get into a car with someone else. So I am spending a lot of time at home.

People keep asking me how I am managing to stay busy. Here are a few of the things I have been doing. Please share yours in the comments, to help anyone who’s bored to get some new ideas.

  • House stuff. Cooking, cleaning, laundry, and all of that less-than-exciting stuff still has to be done, even during a pandemic.
  • Physical therapy. I am doing more than ever because my body is not doing well with all of this sitting in my apartment. It’s not like I was super active before, but even walking around a grocery store is exercise that I’m no longer getting.
  • Medical appointments. My body doesn’t stop having problems just because there’s a virus ravaging the world. I am having almost all of my appointments virtually, which has saved me a lot of energy and time, but I am still having them.
  • New hobbies. At the start of the pandemic, I figured I better start something new to make up a bit for all I was losing. I had wanted to try the ukelele for years, so I bought one. I have already learned a bunch of songs through free YouTube tutorials. I practice most days and it’s a lot of fun.
  • Old hobbies. For many years I have loved to read, crochet, and knit. Those are perfect pandemic hobbies. I did them daily before, and I continue to do them daily. I watch tv in the evenings, too. Before I watched tv any evening that I didn’t go out. Now, I watch tv every evening that I don’t have a Zoom call. *sigh* Oh, and this blog counts, too. Hobbies aren’t only things that are done daily, and writing here every few weeks is a great activity.
  • Volunteering. I did some volunteering before and I still do it. Because of my disabilities, I only volunteered for work that could be done primarily from home. That made the transition easy. I have taken on extra tasks, too.
  • Errands. Yup, those things still need to happen. I find shopping for groceries online to take a lot longer than going in person used to take. Dropping off paperwork at an office can still be done, even if I don’t go inside. Shopping for things online that I would typically get in person is a chore that takes ages, but it still needs to happen.
  • Social media. Some days social media is a drain that wastes my time, but many days it adds value to my life. I manage several Facebook groups and pages in addition to having my own personal feed. It’s a great way to keep up with family and friends.
  • Email, texts, and video chats. I often joke that I have a better social life now than I did before, but it’s sort of true. Meeting online isn’t the same as meeting in person, but it’s a hell of a lot easier. Since it takes so much less energy, and I don’t have the physical pain that comes with driving, I am able to have multiple social video chats in one day! I certainly couldn’t meet up with that many people in person in a single day. Plus, many people I am talking to aren’t local, and we are now realizing that we should have been doing these video chats for years. Hopefully we’ll keep them up. Email and texts take ages to answer. I’m glad for the opportunity to keep up with folks, but I do miss the ease and speed of phone calls.
  • Cleaning out…. things. Between cleaning out all of my way-too-many-what-was-I-thinking? email accounts and cleaning out physical stuff, there’s plenty to do. I’m enjoying the rewards of empty inboxes (yay for inbox zero! Even if it only lasts an hour….) and more space in my apartment.
  • YouTube videos. I have been watching lots of YouTube videos. There are opportunities to see things that wouldn’t typically be available, in addition to all of the previous kinds of content. I have been enjoying interviews with Broadway actors who were/are in isolation, cute dog videos (oh, how I miss dogs!), crochet tutorials, and so much more. I particularly like this channel for things that are disability-related.

All of that, plus random other things that I’m sure I’ve forgotten, are keeping me plenty busy. A few other things you could try would be taking online courses at a local college or through sites like Udemy.com or Lynda.com (hint: many libraries offer free memberships). You could also learn crafts online with YouTube videos or by taking classes, which are offered in many places. Try reading new books, listening to audiobooks, or trying new podcasts. Watch movies you’d always wanted to watch. Learn a language. Research your family genealogy. Redecorate your home in small, manageable ways.

I have noticed that many people are worried about taking up a new hobby or project, thinking they won’t have time to keep it up when things return to “normal.” Why start something that they will just have to give up later? But I don’t think that’s the right attitude. Instead, why not start something you can enjoy while you’re in this difficult state? Then later one, when life returns to “normal” or some other state, you can decide what to keep. You may just find that you enjoy your new hobby more than something you did before, and you will let go of the former. Or you might rotate them. There are no set rules here; you get to make it up as you go along!

So that’s what’s been keeping me busy, along with a few extra ideas for you. Please share your ideas in the comment! After all, these ideas will be useful for anyone who is in isolation during the pandemic, as well as anyone who is stuck at home due to disability and/or illness in the future.


What isolation is teaching me about my health

August 20, 2020

While a lot of folks are venturing out into the world again, I am mostly staying in my apartment. During the hot days of summer I generally stay indoors anyway, since the humidity and heat trigger my symptoms. This year, with no other indoor places as an alternative, I am at home. And I am surprised at the impact it is having (and not having) on my health.

It became clear over the years that too much activity would lead to more fatigue, more pain, more gastrointestinal symptoms, and more random symptoms, but I could never be sure what constituted “too much” activity. I knew that resting helped, but how much rest was needed? More than that, I never knew if an increase in symptoms was from “too much” activity or from something else.

Then there was the food angle. If I had diarrhea, for example, was it from something I ate, “too much” activity, the weather, or something else? Even if I ate my own food, when I was out of the house I would wonder if I could have gotten gluten cross-contamination somehow. What if I ate food made by someone else? Would that be safe?

With so many variables eliminated, it is fascinating to see what remains. Aside from a couple of carefully chosen convenience foods (mmm, gluten-free frozen pizza!) I have eaten an item made by someone else only once in the past 5+ months: a birthday cake. My mother made it, and I trust her to make sure it is gluten-free, corn-free, and free of any cross-contamination. I have not eaten at a restaurant or even gotten takeout. My avoidance of takeout is partly from Covid concerns, partly from convenience (there aren’t many places near me with food I can eat anyway), and largely because I am enjoying the safety of eating my own food. Yes, I’m tired of constantly cooking and constantly washing dishes, but I love the confidence that my food is safe.

Of course, it’s not all easy peasy. Twice I was about to eat frozen vegetables when I realized they weren’t my usual brand (the downside of having someone else do my grocery shopping.) I checked the bag and each time, there was a risk of cross-contamination. Yikes! I am so thankful that I caught them both in time.

For the most part I have felt pretty good. That tells me a lot about the impact of activity level on my health. I was especially aware of this through mid-June. I had almost no pain aside from the predictable pain that came from not attending physical therapy. Then the weather shifted. I am so incredibly thankful to live in an apartment with central air conditioning. None of my previous apartments had it, and when I moved several years ago, I made it a priority. I am especially grateful for that now that I am in isolation. In previous summers, when my window units weren’t sufficient, I would sit at the library, exercise by walking around a craft store, or spend several days at my parents’ house, enjoying their company and their air conditioning. With none of those as acceptable options now, I am stuck at home. Still, even with the door closed and the air conditioning on, the weather seems to be impacting me. And when I do venture out to check the mail or take a short walk, I feel it even more.

I am glad that, as I wrote last month, I am less heat intolerant now than I used to be. Still, “less than before” still doesn’t mean I can handle it well. For two weeks I barely left my apartment. It wasn’t good for me physically or emotionally, but the alternative seemed worse. Even while staying indoors I had increased fatigue (perhaps from the lack of outdoor movement? but probably not), increased joint pain (ditto? but probably not), increased inflammation, and increased gastrointestinal symptoms. The inflammation is bad. My knees are so swollen that my knee braces barely fit. My physical therapist (the one person I get within 10 feet of) put her hands on my neck and shoulders and instantly said that she felt the inflammation. This is not good.

Two weeks ago I received test results: I am hypothyroid. Again. I have had to adjust my medication many times over the years, sometimes in the summer and sometimes in the winter. However, this time I can rule out a lot of factors that could be impacting my thyroid. After all, not a lot else is going on!

Yesterday I felt lousy. I had diarrhea followed by fatigue. It was easy to cancel my “plans” for the rest of the day, which consisted of writing a blog post here, taking a walk, doing my physical therapy, and doing some organizing around the apartment. Instead, I watched tv and crocheted. It was relaxing and it helped. Normally I might have thought I had done “too much” that day, or wondered about something that I ate outside of my home. Instead, I could narrow the culprit down to two things: the weather and what I ate. I had eaten ice cream after lunch, which is usually fine, but I’ve had a lot of dairy lately and maybe it was just too much. And right before lunch I had felt hot on my way home from my walk. The humidity was bothering me, which is never a good sign. And then I ate immediately after I got home because I had a therapy appointment online that I needed to be ready for. Oops. I’m pretty sure those two things combined were the problem. It was good to at least have a reasonable guess as to the cause of the problem, and then to be able to easily rest afterwards.

The other day I met up with a friend. We took a walk, sat and chatted, walked some more, and went home. We kept our distance and wore masks. We were safe. But part way through the visit I felt ill, and I know 100% it was from the heat. On a cooler day I had met up with my parents. We didn’t walk as much and just sat. I felt fine afterwards, just tired. I’m not used to even small amounts of socializing any more. The difference was definitely the weather.

So what’s my point? My point is that I am getting a better understanding of how the many different variables of a “typical” day impact my life. I can figure out what makes me feel ill, and what doesn’t have an impact or even makes me feel better. The goal for me will be to use this information when, one day, I am able to go out and do things again. I will need to find a balance. Avoiding symptoms 100% is obviously not possible; if I can’t do it now, then I’ll probably never be able to do it. I also don’t want to cut off the rest of my life in order to sit at home and hide from my symptoms. Still, my hope is that I will get a better sense of where the balance lays, so that I will be able to focus more on the things that are worth the increased pain and other symptoms, and avoid the ones that aren’t.

I have also learned how big of a difference telehealth makes for me, and will advocate for its continuation. Several of my doctors have already said that they plan to continue with it, so I will need my insurance to cover it. Not having to drive for an hour to sit in a waiting room before finally seeing my doctor for a 15 minute conversation that involves no physical examination is waste of everyone’s resources, and I will be glad to see that end. I want to reserve my appointment-related energy for the appointments where attending in person actually matters.

With isolation far from over, I know that I will learn many more lessons. These are an excellent start, though, and I am glad that there will be at least one positive thing to come out of all of this for me.

What about you? How has your health been during isolation? Are you learning anything new or clarifying previous assumptions? Please share!


Why I think more folks with chronic illness should blog

July 26, 2020

Several days ago this blog had an anniversary: 9 years! It’s hard to believe that I have been writing about chronic illness issues for 9 years and people have been reading it. In those 9 years I have written 769 posts. WOW! And in those 9 years I have learned a lot about the benefits of blogging about chronic illnesses.

I have learned that this is an excellent outlet. On this site I have written about my fears and learned that I was not the only one with those fears. I have written about my pain, fatigue, and other symptoms and have learned that I was not the only one dealing with those symptoms. I have written about medical trauma, embarrassment, harassment, and more. Again, I learned that others experienced those same things. I have also written about supportive friends, caring family, great doctors, and others, and found joy in others’ stories of similar experiences. This has not only helped with the loneliness and isolation that I, like so many others with chronic illness, experience, but it was also extremely validating.

I didn’t know many people with chronic illnesses when I started this blog. Slowly, I got to know my regular commenters. I now get excited when I see a comment from Lorna, Cordelia’s Mom, Tamara, Karen J, and others who I feel I have come to know in some small way. Making connections is hard, especially for those in a community where so many are not able to connect due to the very issue that makes them search out connection in the first place. Blogging gave me a way to reach out to people around the world and have people reach back, all without leaving our homes.

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So often we are left on our own to figure things out. Doctors aren’t helpful, or the help we need is outside their area of expertise. I have written about so many things that I struggled with and I received a lot of good advice from folks who have actual lived experience. You gave me tips on transporting a wheelchair, getting a bidet to help with my sore butt after too much wiping (thankfully that’s no longer an issue now that my food problems have been sorted out!), dealing with inconsiderate strangers, and more. Blogging has brought me so much useful information. Thank you for that!

Most surprising to me were the therapeutic benefits of blogging. Living with chronic illness is hard. I was able to vent when I needed to vent, without judgment or burdening a friend. I said things that I probably wouldn’t have told another person. I was used to hiding so much, and suddenly I had an outlet. It was like a public diary at times. Making this blog anonymous gave me a freedom that I had never experienced and I was able to open up. At first I just opened up a little, but to my shock, those most difficult, most private posts were the ones that people most appreciated. I got so many comments from folks saying that they wished more people would discuss those topics. That encouraged me to write about them a bit more. And then more.

This blog gave me the chance to practice that openness. As I became more comfortable writing about my symptoms, fears, and diagnoses on this anonymous blog, I began to slowly talk about those things in person also. Bit by bit it became easier, and now I am a fairly outspoken advocate. I highly doubt that would have happened without this blog.

Blogging isn’t for everyone. I have more recently done some work under my real name. Under my real name I write, speak on podcasts, and have even done a few videos. They are all so different, and I can see why each is both loved and hated by various people. I’m a talker, and I prefer talking in general, but when it comes to my chronic illnesses, I definitely prefer writing. That just works for me. I also prefer reading blogs instead of listening to podcasts or watching videos. But each has its benefits.

Maybe something else works for you. Despite the title of this post, I don’t think that blogging is necessarily best for everyone. But I do think that many folks with chronic illnesses can benefit by having some sort of blog, social media channel, YouTube vlog, or other way of sharing.

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And beyond each person’s individual benefit, I believe that the community as a whole benefits when we write and talk about our chronic illnesses. Our community is marginalized. We feel isolated. Too many people pretend that chronic illness doesn’t exist or isn’t important. Government programs do not support us, laws do not protect us. We face discrimination and worse. Communicating with each other and with the world will help. It will help the individuals who are also feeling marginalized and it will help society in general.

So if you have ever considered starting a blog, a podcast, a YouTube channel, or anything else, why not start today? You can start for free with very little time commitment. If you’re not sure where to begin, please reach out to me (msrants@gmail.com) and I’ll be glad to help you!

Thank you for 9 wonderful years. I look forward to continuing to write and communicate with you!


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