Burned out and needing to reprioritize

November 16, 2020

I noticed it after the election, though in hindsight it started long before. I tried to ignore it, but I should have known that was a mistake. Still, it gave me the wake-up call I’ve been needing.

For a while I was feeling better than I had in ages. The crisp fall air was delightful, and with the cooler air I had less inflammation. I enjoyed better sleep with the fresh autumn air coming through my open bedroom windows. I was taking 2 walks every day, and one of them was longer than my previous once-a-day walks had been. I was doing pretty well, and thought it would continue at least through the fall and winter.

Then on that beautiful Saturday, we got the election results. It was like I had been holding my breath for months, and I could finally exhale. What a relief! I was having a socially distanced visit with a friend, our first time seeing each other since this had all begun. We had met up in a suburb between where we each live, and had taken a walk. We got the news after the walk, as we stood across the street from each other, chatting. First there was stunned disbelief, then jumping up and down (her), texting everyone I could think of (me) and dancing in the street, literally (both of us.) I was excited all day long.

But here’s the thing about adrenal fatigue: any type of stress on the body can’t be handled. Bad stress causes problems, but good stress also causes problems. I explain it like this: winning the lottery would probably have the same physical impact as the death of a loved one.

So, after many months of the pandemic, a lot of isolation (I live alone and have no one I can be in a bubble with, so I haven’t had any non-medical human contact, even a hug, in 8 months), fear over the election, and then election-related celebration, my body couldn’t take any more. The good thing is that I didn’t have the kind of fatigue “crash” that I have had in the past. Maybe the medication is helping or maybe it was something else, but I’m grateful for that. Still, I felt it, but I pushed myself anyway to keep doing things. I did stuff around my home. I brought my car in for work. Each day, I felt it coming on more and more. Then on Wednesday I had a sore throat and a slight cough. Uh oh.

I’ll interrupt myself here to say that I know fatigue, sore throat, and cough are Covid-19 symptoms, but I was 99.9% sure it wasn’t Covid-19. These are the exact symptoms I get whenever I have adrenal fatigue issues. The cough wasn’t regular – it was one cough every hour or two, a small one, and it had nothing to do with chest congestion. The sore throat has more to do, I think, with my thyroid getting inflamed. So while Covid crossed my mind, it was hours after I’d already assumed this was my usual adrenal stuff. These are the warning signs, the “I better rest NOW or else I’ll get really sick” signs. That’s what I was paying attention to.

So by Thursday I knew I had to rest, and I did. I felt sort of gross and forced myself to shower, which took far more energy than I’d have liked. Aside from that, I rested all day. I ate leftovers. I watched lots of YouTube knitting videos. I crocheted and knit, read a book, watched tv, barely left the couch. It was just what I needed.

On Friday I was still a bit tired, so I spent another day watching YouTube videos, this time about decluttering (something I have been working on.) I felt inspired, so I put away a few things, and made notes about other things I would do when I had more energy. That little bit of activity felt good, so I figured I would be ok the next day. Usually I only need to rest for a couple of days if I listen to the warning signs. (If I ignore the warning signs, I end up sick for about a week and a half, so it’s worth paying attention.)

But then Saturday rolled around. I was still a bit fatigued. No problem, I could put off the world for another day. I watched fewer videos, but still rested. I thought about taking a walk. After several days of rain the sun was out, but the idea of expending that much energy was too much, so I stayed in. Watching videos and reading a book felt like such a luxurious treat! I cleaned up around my apartment a bit, finally clearing the crap off my coffee table for the first time in ages and putting away the clutter that had accumulated in a corner of my living room. This felt good.

Then it was Sunday, and I knew I was ok and should go back to “normal.” The thing is, I didn’t want to do normal. Normal for me felt like a job. And for the first time, I realized that normal had become a job! I was spending so much time on volunteer work and some small bits of paid work, and feeling the rest of the time like I needed to check off items on my personal to-do list, that I wasn’t taking time to relax. Watching a knitting video felt like a luxury I had to squeeze in, and spending time on that instead of on something that was supposedly “productive” was stressful. WTF? I’m disabled. I’m unable to work. So what am I doing? I’m pushing myself to work as much as possible anyway. Hmm. Not good.

Granted, I’m not “working” that many hours. I don’t have many “good” hours in a day, and I have to spend a lot of time cooking, cleaning, exercising, doing physical therapy, etc. Still, I am trying to do too much with my remaining hours. That’s why I have multiple posts I have been wanting to write for this blog for weeks, but haven’t been able to find the time to write any of them. I am writing this now only because I haven’t quite returned to my “normal” routine yet. Even so, my list for today has way too many items on it: a video call with my mom, a video call with someone who wants to pay me for some work that I don’t have time for but don’t want to turn down, taking care of some financial stuff, working on a book that I want to write, doing laundry, decluttering around the house a bit, watering the plants, writing this post, taking a walk, doing my physical therapy… that’s already way more than I have the time or energy for. Plus, I should really shower and leave time and energy for meals. I am trying to do too much, and it’s leaving me burned out.

Taking four days away from the world has done me so much good. It gave me the physical rest that I have so badly needed. It gave me emotional rest. But it also gave me insight. What I am doing is not working, and something has to change. I have always had a lot of drive. When I was in graduate school, working towards a PhD, at one point I worked as a teaching assistant and also the manager of my apartment building, while also volunteering as vice chair for the university’s Americans with Disabilities compliance board. Sure, I was young and still had energy, but YIKES! That was a lot! I’m not good at doing things part way.

On top of that, there’s the problem that while my body doesn’t function the way I want it to, my brain does, and my brain wants to do lots of things. I have a lot of interests, and I keep adding more and more, but not taking things away. During the pandemic I have added one new hobby, one new volunteer job, and one new paid job (the paid job is short-term and very little time, but still takes mental energy.) The thing is, I didn’t remove any of my old activities. Sure, I am no longer driving to doctors or doing any in-person socializing. I am not dating or going to family dinners. But while those things took up time, they also gave my life balance. Now I am lacking that balance. I am all work and little play, and that’s not sustainable.

I knew this before. I’ve been aware of it for at least a month or two, but I wasn’t sure what to do about it. I didn’t want to give anything up, so I kept going. I was managing ok, after all, so that meant I could continue, right? Obviously not. Because typically after this kind of fatigue, I take a few days to rest and then jump right back into things. I never feel this kind of mental and emotional resistance. Things couldn’t be more clear: it’s time to reprioritize. I am not sure what that will look like, but I know it needs to happen.

This is not the first time this has happened, and I’m sure it won’t be the last. I know this is something that many of us struggle with. So as I take some time to figure out how to better balance my life, I hope that you will do the same. It’s so much better to reprioritize before we get burned out, after all. But since it’s too late for that this time, I’m going to listen to my body and do it now.


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?


Worried about getting medical care

June 19, 2020

I have been very fortunate: so far, I have been able to stay isolated. I leave my apartment for occasional walks, wearing a mask and keeping my distance from people. The only indoor space I have entered is the main building of my apartment complex where I have gone a few times to pick up packages; even then, I have been able to keep my distance from people. I have even been able to have short visits with my parents. We stay outdoors, at least 10 feet apart, wearing masks. It’s not ideal, but I’m very grateful for those visits. I have been very lucky, but how long can that last?

2020-06-02 17.42.29

From the start I knew I would likely break isolation for medical treatment. I didn’t know when or why, but I figured that would be the reason and it looks like I might be right. Frankly, it’s a bit shocking that I have been able to go for 3 months without in-person medical treatment. I am feeling the effects, of course. My muscles are spasming, I haven’t gotten my period in more than 4 months, my knees are so inflamed that my knee braces no longer fit (those marks on my knee are definitely not ok!), and I am pretty sure that I have increased inflammation throughout my body. It’s not good.

On top of that, I am due for a lot of followup blood tests, one doctor wants me to get xrays, and I can not get the new orthodics that I have needed for months and which insurance will finally cover as of last week. Some of the blood tests I should get are routine. Some are following up on issues which are probably fine. But one is to follow up on something potentially serious. I should have gotten the tests done last month, but we have been waiting.

My doctors are weighing risks versus rewards, and they are not in agreement. One thinks I should get blood tests while another thinks that I should wait. One thought I should wait for physical therapy but now has changed their mind. Of course, each doctor has different considerations. My need for physical therapy wasn’t as big last month as it is now. Some blood tests are more necessary than others. Some doctors are more conservative than others. Some are more aware of my risk factors than others.

I am not as high-risk for Covid-19 complications and some folks. Still, I am more at risk than many, and I do not want to put myself at risk if I can avoid it. Then again, my symptoms will only continue to get worse and it is not as if it is a matter of waiting just one more month. It could be a year or more before I can safely see any of my medical practitioners, so waiting might not be the best approach.

Logically, I know that now might be a good time to get treatment. After all, the numbers are expected to go up soon. Still, it doesn’t feel safe. We don’t know much more about this illness than we did in March. We don’t have any additional safety measures, either, except for wearing masks.

So I am scared, unsure, and worried that I will make the wrong decision. There is no “right” decision, though. I don’t have a crystal ball. Sooner or later I will need to get medical care and I will either become ill or I won’t but until then, the best I can do is make a guess.

I am beyond frustrated that people in my area, and especially politicians, are not taking this situation more seriously. I am watching them engage in risky behavior that could contribute to the spread of this virus for the sake of a meal at a restaurant or a haircut, while people like me are delaying important medical care. And even as I type this, I am in so much pain that could be alleviated with physical therapy. It is so unfair.

Like I said, I know that I am lucky. Many people have not had the option of delaying medical care. Some of them have been able to get care without incident, while others were not as fortunate. I look forward to the day when we can all access care without fear (or at least with much less fear) of contracting this virus.

What has your experience been like accessing medical care during this time? And where are you located? I know that the situation is very different in different countries (and even in different regions within my own country.) Please comment and share, because I’m curious to know what others are doing. Best of luck to you all!


Finding my new (figurative) voice

May 21, 2020

I haven’t written here for a while, and I have been trying to figure out why I feel less motivated. Is it the pandemic? Is it that I have run out of things to rant about after nearly 9 years (wow!) of this blog? I have finally had to admit to myself that it’s neither; it’s my book.

Many years ago, I decided to write a book about living with chronic illness. I plodded along slowly for several years, finally picking up the pace about a year ago. More recently, I have been spending a lot of time working on it. But lack of time isn’t why I haven’t been writing here.

In addition to the time I have spent on the book itself, I have also spent a lot of time talking and writing about the book. I am in writing groups with other authors, I talk to family and friends about it, I talk to interested strangers about it, I post about it on social media, I write about it to the followers on my email list. But the effort of talking and writing about the book isn’t what is stopping me from writing here, either.

Finally I figured it out: it’s my voice. You see, I chose to write the book under my real name. I am sharing a lot more there than I am used to sharing publicly. At the same time, I am sharing less than what I have shared on this site. I am finding a new balance, and in the process, I am holding back on some things. The question I ask myself isn’t, “Should I talk about this in an email or on the blog?” Instead, it’s, “Should I talk about this under my real name or use my pseudonym?” For years I leaned towards the latter but more recently I have been leaning towards the former. And as I share more with my other audience under my real name, I struggle with not sharing those same stories here. After all, how can I maintain my anonymity here if I share the same story under my real name?

Don’t worry, though, I am not abandoning this blog! Instead, I am simply finding a new balance. As with many things in life, this is not a one-time task but an ongoing process. At the beginning of the book, I had to find that balance and I did. Now am finding it again, and the pandemic only complicates things. When I eventually publish the book, I am sure I will need to find that balance again. This is just how things go. But I am sure that I will be find my ranting mojo before too long.

Meanwhile, I would love to know, have any of you ever written books about chronic illness? If so, did you write under your real name or a pseudonym? Did you enjoy it? Was it well-received? Please tell me all about it in the comments! Feel free to share the link to your book so that others can find it, too.

As for the link to my book, well, first of all the book isn’t done yet, so there’s no link. But also, there’s that whole anonymity thing again. If I share the link to a book that’s under my own name, then I won’t be so anonymous anymore, will I? And while I may one day be comfortable sharing all of the stories about myself that are on this blog (I’m mostly comfortable with that now, in fact), there are some stories here about family, friends, dates, and others that are not mine to share. I always checked with them before writing those stories, but they agreed to be mentioned on a blog that was anonymous, and it wouldn’t be right to change that now. So this blog will remain anonymous. Still, my hope is that when my book is one day published, you will find it anyhow. And that it will bring you joy and comfort.


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