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!


The rules are always changing

July 20, 2020

I remember when I first made the connection between the weather and my gastrointestinal symptoms and fatigue. I was lying on my dorm room bed, nauseated and exhausted, and it suddenly hit me: this wasn’t the first time I had felt this way on a hot day. I paid attention and sure enough, a pattern formed.

Of course, the weather wasn’t my only trigger and it would more than a dozen years before I finally put together some of the pieces of my health mystery. Still, this was an excellent start.

Screenshot_20200720-121807

Over the years, as my overall health worsened, my reactions to hot and humid weather got worse, too. I began to avoid spending any more time outside in the summer than absolutely necessary. I love being outside in the cold air of the fall and winter, but sadly, most folks do not unless they are doing winter sports, which I can not do. When my friends hang out outside in the summer, I can not join them. This has been incredibly hard.

Last year I noticed some improvement. My overall health has improved a lot, and my new medication last summer probably had a bigger impact than I had realized. I didn’t think too much of it until this summer. Somehow, I could be outside without immediately feeling terrible. Fantastic! Or so I thought.

One hot day, I waited until the evening to take a walk. It was still warm and humid, but not as much, and I was feeling ok. I walked farther than I had planned. It was wonderful! Then, almost halfway through my walk, that particular feeling that I know so well hit me and I knew I would need a bathroom, and fast. I turned around and headed home as fast as I could. Thankfully the symptoms weren’t too bad (on my admittedly skewed scale.) Still, that wasn’t fun.

Another day I was sitting outside, enjoying the fact that I could simply be outside. It was around 82F and the dew point was around 60. Normally I couldn’t have been out in that weather, so this was a real treat! Until it wasn’t. Until that feeling hit me again. I got to my bathroom as fast as I could and felt horrible the rest of the day.

I knew the old rules. I knew that within moments of being in the heat and humidity I would feel bad, but if I got into air conditioning quickly enough, I could avoid feeling horrible for the rest of the day. But these new rules are confusing. My body seems fine… until it suddenly isn’t, and by then it’s too late to avoid the symptoms. How long can I be outside now? 1 minute? 5 minutes? 10 minutes? And what are the new temperature and dew point cutoffs? What does my body now deem acceptable? I still check my weather app carefully, but I no longer know what will trigger my symptoms and what won’t.

The changing rules are one of the trickier challenges of living with chronic illness. This is nothing new. The rules have changed many times over the years, and every time it’s a pain in the ass to figure out the new rules. There’s no guidebook – it’s all trial and error. I don’t like it, but I have no choice.

Going outside is more important than usual this year. Typically when I get tired of my apartment, I go to the library or I walk around a store. I find visit friends. None of that is possible this year. On the other hand, at least when I feel sick, I don’t have to worry about missing out on plans outside of the house, because there aren’t any.

I am counting down to autumn, when I won’t have to worry about the temperature any more. Until then, I will be sitting at home, trying to figure out which days I can go outside without paying for it later. And feeling very grateful for my apartment’s air conditioning.


What even is acceptable risk anymore?

June 24, 2020

This will probably make no sense to those in other countries, where folks are taking coronavirus seriously and are staying isolated in order to reduce cases. Here, many people are trying to resume their “normal” lives as much as possible even though we never go through the first wave, and now we’re seeing cases rising again.

So now as one meme put it, I feel like I’m being gaslit all the time. On the one hand, I see people going to the grocery store, going to the beach, and doing all kinds of things, and it makes me feel like I should be able to take on a little more risk. But then I remember just how nasty COVID-19 is. Even if the risk is small, getting this thing could be disastrous, and it’s just not worth taking a chance.

Prime example: dogs. Recently I pet a couple of neighbors’ dogs and it made me super happy. Each time I was near my apartment, the owner stayed at least 6′ away, and I washed my hands carefully immediately afterwards. I think that was ok. I feel pretty sure, anyway. But now someone wants me to watch their dog for a few days and I’m so torn. My friends mostly say it’s fine. My doctor says it’s fine. But I’m worried. Because even if the odds of me getting sick are slim, is it worth taking that tiny chance? I just don’t know!

And that last sentence is the key: I don’t know. Because no one knows. We don’t know how risky anything really is. There’s so much unknown about this virus. While it has turned our lives upside down, it’s still new, and we know very little about it.

I hate playing these guessing games. The safe thing is to say no, and I could do that easily. The problem is, I haven’t gotten within 6′ (or really, 10′) of anyone in more than 3 months. I haven’t hugged my parents. I haven’t gone on a date. I haven’t seen friends. Nothing. Having a dog visit would be wonderful company. It would be good for my mental health, but only if I can relax. If having that little cutie here would stress me out, then it’s not worth it.

So while I continue to debate, I would love to hear your thoughts. What do you all think I should do? Watch the dog? Turn them down? Take the dog but provide my own dog toys? (I would still have to touch the food and treat containers, the leash, etc. And I can’t wash the dog – he’s too big for me to bathe him.) What would you do?


When the solution becomes the problem

March 31, 2020

How do you handle fear? It’s one of the most basic human emotions, and something that we all experience from time to time. Right now, I would guess that more of the world than usual is feeling it on a regular basis.

I don’t know if there’s a “right” way to handle fear, I only know my way: planning, control, and facts. When I’m scared about a new medical test or a current flare or even something not health-related, I deal with it by focusing on the facts, and making plans for what might happen. That allows me to feel in control, which in turn reduces the fear. It’s not perfect, but mostly it works.

Right now, that’s not possible. We have few facts; this is a disease that didn’t exist in humans just a few months ago. The facts that we think we know, keep changing. It also depends on which experts we ask.

Making plans makes things worse. One downside to being a planner is that I’m great at looking 10 steps ahead. I read a lot, so I understand a lot about the world, not just in terms of the pandemic but in general. On top of that, I’m smart. I’m also a logical thinking, very left-brained. Put all of that together, and I have some very clear ideas about where the world might be headed. I have multiple scenarios in mind, based on what actions are/aren’t taken and what so-called facts turn out to be true or false. None of them are good, though some are worse than others. Unfortunately, so far my predictions (made 2 weeks ago) have been accurate.

Not only is making plans very difficult, but there’s another wrinkle: they don’t help. There is absolutely nothing I can do to make the situation in the world any better. There is nothing I can do to make it so that I can sooner see my family or my friends, go out socially, date, have sex. Nothing.

The best I can do is make plans to keep myself alive and healthy. So far I am doing that through day-to-day actions. There are no long-term plans to be made. I just have to keep doing what I’m doing: staying in my apartment, carefully cleaning the groceries that my neighbor brings to me, leaving my mail to sit in the corner of my home for a week (I’m cautious and also not that interested in the mail.) My “plans” involve planning meals, ordering extras of my prescriptions in advance, choosing ebooks to download, and texting friends to stay in touch. Those are not long term things.

Looking at “facts” is not only unhelpful, it’s incredibly stressful. It makes me feel a lot worse. Ditto for making plans. I never tell anyone my predictions because I don’t want to upset anyone, but they aren’t great. I hope I’m wrong, I really do. But in the meantime, having those thoughts in my head only makes things worse. Even as I type this, I am being careful not to think about anything in detail.

So what’s the answer? For me, it’s focusing on the day-to-day. As a planner, that has always been incredible difficult. I thrive on thinking about the future, not only to handle fear, but also to increase excitement about fun things to come, to work out solutions to problems, and more. Avoiding thinking about the future is taking a real effort.

I like reading the news, but right now that’s stressful. Still, I don’t want to avoid the world, and there are other things happening. So I am reading the headlines every day, and trying to only read articles that are not pandemic-related. I am not succeeding 100%, but the reduction has still helped immensely.

When family and friends talk about the pandemic, it’s hard not to get drawn in. I have always been political, so it’s hard not to get sucked into conversations about the way our politicians are handling things. But since I hugely disagree with almost everything they are doing, yet have no ability to change it, this upsets me again. Whenever these topics come up, I try to change the subject. Again, I do not succeed 100% of the time, but any reduction is helpful. I am trying.

Focusing on the day-to-day can be especially hard when so little else is happening. When I talk to someone and ask, “What’s new?” they don’t have much to say. I am trying to focus instead on question like, “What have your kids been doing to stay busy?” “What are you reading right now?” “What shows or movies have you been watching?” It helps a lot to have something else to talk about, and it gives me ideas of shows and movies to watch. For my part, I tell them about the books I’m currently reading, the bird that’s building a nest outside my window, or anything else I can think of on a neutral topic. I ask about their families and tell them about mine.

This is hard. There is nothing about this situation that is easy for anyone. I am alone, and not being around other people is hard. Others are with families that are crowding them and they need time alone. Yet others are in unhealthy home environments are need to leave but can’t. We are scared. Kids aren’t learning. People are losing their jobs or becoming overworked. There’s a lot of stress out there. So yes, it’s damn hard.

That’s why I am focused so much on taking it one day at a time. It doesn’t fix anything in the long term, but it makes this manageable for me in the short term. For now, that needs to be enough.

And one more thing: when I need to, I have a good cry. Because that’s ok, too.


%d bloggers like this: