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.

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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.


The help I didn’t know I needed

January 29, 2020

The last week and a half have been really rough. But I’m trying to learn from it.

First there was a minor injury. I’m still not sure how it happened, I just know the pain was intense and different than what I typically experience. That lead to a visit to the doctor followed by an MRI later that day. I was out of the house, in pain, rushing around, for 8 hours. Not surprisingly, between that rough day and the pain, that lead to increased adrenal fatigue.

Here’s where I made my mistake: I didn’t take an extra dose of my adrenal medication on that day when I was in the most intense pain. I didn’t take it on the day of the doctor visit and MRI, either. Nor did I take it in the days following. I kept thinking that if I got some rest, I would be ok. I was wrong. Finally, I took that extra dose two days ago and I am finally feeling like my old self again. I’m still in a lot of pain, but at least the fatigue isn’t dragging me down to the point where I can barely function. I am once again able to answer emails, run small errands, and write this blog post.

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So now it’s time to learn from my mistake. You see, I thought about taking that pill last week, but I dismissed the idea. The fatigue gave me brain fog, and I couldn’t think clearly enough to realize that it was what I needed most. I told myself that I would be ok with some rest even though I should have known from past experience that it wouldn’t suffice.

Meanwhile, I saw my mother twice that week. The second time she commented on how much better I looked. I know I didn’t look that good, so I must have looked truly horrible the first time. Friends who don’t usually check on me were texting daily to ask how I was feeling. Other people knew I was struggling, even if I didn’t see it myself.

So this morning I sent a text message to a few select people: my parents, several friends who are my chosen family, and a couple of other close friends. These are the people I feel are most likely to know when I’m suffering from adrenal fatigue. It started with, “Hey folks, I want to ask a favor.” I went on to explain my mistake in not taking my adrenal medication sooner and why it happened: fatigue leading to brain fog which affects my judgement. Then I continued, “So the favor is simply, when I say that I am struggling with adrenal fatigue, please remind me to consider taking some extra of the medication.”

Ideally, I would make myself a note and leave it someplace that I would see it, but the truth is, when I feel this bad, I won’t see the note. Or I will see it and ignore it. I spent two days doing little except watch tv. I could barely get dressed. In that state, I can’t trust myself to be the only one to look out for me. That is why I ended the message with, “At the end of the day, of course this is my responsibility. But since you are the folks I am most likely to talk to about ongoing symptoms, I wanted to reach out because sometimes I need a bit of help. Thanks for being awesome and supportive in general!”

I think this is something we can, and possibly should, all do. It is especially important for those of us who live alone, or who live with others who are not supportive. Find one or more people in your life who you can trust, and simply ask them to remind you to do a couple of specific things when they see you struggling. Maybe you want to give them a short list, and ask them to send it to you. Maybe, like me, you only want to ask them to remind you of one thing. This isn’t the kind of thing you will ask of everyone you know, but of just a select few who know you well, who support you, and whom you trust.

Part of self-care is asking for help. Today, I took that step. What about you?


My new gym routine

January 1, 2020

If you have been reading this blog for any length of time, you probably find this title strange. But it’s true, I have a new gym routine!

About 10 years ago, I got into my first gym routine. I had quit my job, and decided to take good care of my body during my time off. I found an inexpensive gym near me where 2 or 3 times each week I would lift weights as my physical therapist had taught me and do some pedaling on the recumbent bicycle. It went well until I got a job.

I tried to keep it up. I went to the gym a few times on lunch breaks, but it was too rushed. I went in the evening a few times, but I was so tired. Mornings weren’t an option; it was hard enough to get to work on time. I went less and less often before finally giving up.

I didn’t know it at the time, but my body was suffering. Untreated Celiac disease, improperly treated hypothyroidism, and the start or worsening of adrenal fatigue were taking their toll. Eventually I left my job and went on disability benefits. So many days, it was hard to walk to my car. The gym was out of the question.

This time around it’s totally different. My approach is, something is better than nothing. This won’t be true for everyone, of course. For a lot of people, even tiny bits of exercise will make them worse. I’m pretty sure I was at the point for a while. Still, I am remembering 15 years ago when I was having a tough time, and a friend encouraged me to lower the bar and do a lot less. Instead of taking a long walk, or even aiming for a shorter distance, I set a time limit. My goal was a 10 minute walk every few days. That’s it. Five minutes down the street and then turn around. I could walk as slowly as I wanted and needed to. This was a great start, and I found myself walking faster, going farther, in those 10 minutes. I no longer saw snails passing me by. Eventually I increased the time to 15 minutes, then 20. Of course, that was a long time ago, and my abilities are quite different. Still, I remember slowly building up from something so tiny.

For a long time now my medical practitioners have been encouraging me to exercise more, especially because they know that there is a gym in my apartment complex. Each time I tried, though, it went badly. Some days I was ok, but others I was exhausted and felt horrible for the rest of the day and sometimes even the following day. Since I never knew how I would feel, going to the gym felt too risky, so I often skipped it. If I had plans in the afternoon, I wouldn’t go in the morning. It was a big hassle. I had to change my clothes, get over there, lift a bunch of weights, ride the bike, get home, and shower. It was a lot!

This time is different. I figured something was better than nothing. Last year an occupational therapist wanted me to do a specific set of weights. Under her supervision it went well, but when my sessions ended and I had to keep it up on my own, I couldn’t, for all there reasons I just gave. I would have a setback after working out, then by the time I went to the gym again weeks (or more) later, I had to start over at a lower weight again. It was incredibly frustrating.

Then I started to think, since that one exercise is what I most want to do at the gym, what if I do only that exercise? No others. I wouldn’t exhaust myself because I wouldn’t do other weights or any cardio. I wouldn’t have to change my clothes; I wouldn’t be exercising my lower body so jeans and snowboots would be ok, and I wouldn’t be sweating. This also meant that I wouldn’t have to take a shower afterwards. I could even do my exercise on my way home from someplace.

For the past two months, I have been going to the gym twice a week. If I need to move a day because I don’t feel well, that’s fine. There’s no pressure. I simply want to keep going. I am only there for 5 minutes, if that. Yes, I feel self-conscious sometimes when folks see me walk in, and then see me leave mere minutes later. But you know what? It’s better than not showing up at all!

I was supposed to go to the gym today, but I strained a muscle in my neck and I am worried about injuring myself. There’s no guilt. No concern. I will go when my neck feels better. If I miss an entire week, that’s not the end of the world. I will not let it derail me. I hope I can get there tomorrow, though, because I enjoy the feeling of accomplishment, even though it is too soon to notice a big difference in my strength.

I am not doing a lot compared to my peers. This is small stuff. But you know what? I can’t get to the big stuff (ok, the slightly bigger stuff) without starting small. Some people can, but I can’t. That’s ok. And even if I never do more than what I am doing right now, at least I’m doing something. This is manageable, which means I’m actually doing it. This is my longest gym-going streak in the past 10 years and I plan to keep it up. Wish me luck!

Meanwhile, could this approach apply to something in your life? Maybe it’s exercise, a dietary change, cleaning your home, making new friends, or something else. Is there some way that the “something is better than nothing” approach could help you, too?


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