#27: Long COVID Life Update

Today I share an update on my health (all good things) and what I do to recover when I push myself too much, overdo it, and have post-exertional malaise.

Transcript

Zeest Khan (00:01)
Hello and welcome back to Long COVID MD. I'm Dr. Zeest Khan. I am recording a really casual episode today. I'm not even putting in the intro that I typically do, so you might notice that. And I hope the title of this is not alarming, nothing terrible is happening. I've just overdone it and I have a lovely interview.

ready to be edited and uploaded, but I just don't have the bandwidth or the energy envelope to tackle that. So I thought I would come here and instead of skipping a week altogether, just update you on how I'm doing. You guys have been so generous about sharing your stories through email and through Twitter and now Substack. And I wanted to, you know,

do the same because this is a two -way street and I really appreciate the community here. So I have over the last month or two kind of ramped up my efforts with this podcast and in the written form, as I've mentioned on the podcast previously, I started a sub stack

account and I did that very intentionally after looking into the best platforms or the best ways for me to try to write and use writing as a form of communication and something that could supplement the podcast. I had the idea initially because as I've also shared here, it's hard for me to do

episodes like this where I speak extemporaneously because I often lose my train of thought. So I often script my solo episodes and that itself was very, you know, it's a big task and then recording it was another task on that. So I thought, well, I could do something where I

publish the writing so I don't have to do the second layer of this task and it still is out there and potentially helping people. So that's my intention with the Substack. But as with anything in my life or a project that I start, you know, just like you probably do, I start getting excited and I start getting...

ambitious and I what I ended up doing was I ignoring a little bit the signals that my body was sending me that you're doing a little too much here you're pushing a little too hard you're pushing too hard for too long of a period of time and between the body cues and my own life experience of knowing how much I can

typically do before I start having post -exertional malaise, I was expecting a little bit of a crash. And yesterday, the day before, and certainly today, I found myself winding down my day much earlier than I had been. And...

feeling those flu -like symptoms of body aches, more fatigue, having a harder time finding words, having a harder time understanding written, you know, things in writing. Those are all the cues that I am familiar with that tell me that I have overdone it. So today, the theme of the day is

cozy, comfort, rest. I washed my hair after a very long time. I changed into some clean, soft clothes and I'm speaking to you guys here and then I'm lying down.

I don't know how post -exertional malaise or a crash feels to you. I don't know what cues your body gives you to tell you when you've reached or maybe are pushing past your limits. I'd be really interested to know, but you know, these are mine. Those are my...

symptoms and those are my body's cues.

My voice also gets weaker too. So I'm going to take a pause to have a sip of water here.

Okay, I'm gonna catch my thought again. I was talking about what it feels like when I overdo it. I'm curious to hear what it feels like when you overdo it. If you don't have the answer to that, I invite you to pay attention to what those cues might be. Whether it is a feeling in your body,

that you don't even have a word for or an adjective for, whether it's like your heart rate's going up, maybe you're one of those who tracks your heart rate very closely. I am not one of those, but I can certainly feel, know, when I, I've noticed that I get winded.

a lot more this week. I've been so winded walking up a flight of stairs and I hate it. I live in a two story home and I have now that I'm speaking out loud and thinking this through, I have been limiting the amount that I move up and down the stairs. It is an intentional thought process that

I'm like, okay, what before I head down the stairs or head up the stairs, what do I need that in the next hour that's gonna make me wanna come back downstairs? And I have child labor in the home, so I am sending them on tasks to pick things up for me from downstairs and upstairs. And if you're a parent, you realize that can be kind of annoying too, because suddenly they don't know.

where the kitchen is. Suddenly they don't know how to understand your descriptions of where things are. And partly I'm probably not making as much sense too because I can feel the brain sludge. I just feel it. I'm also someone who gets migraines. My headaches have been near debilitating. I have been getting

treatments for them, but I had a breakthrough migraine in the middle of the night last night. I'm still dealing with it today. Luckily, it's not really severe. I get Botox treatments for those, but I missed my last scheduled session because I wasn't feeling well. I'm also

looking to see if I can maybe switch providers and get Botox maybe more effectively placed somewhere else or get a second opinion. But I can do a whole other episode on headaches and long COVID if that is interesting to you. Okay, so brain sludge, fatigue, shortness of breath.

migraines.

That's how I'm feeling today. I call this a crash or a dip. I'm interested to hear how you describe this period when you're not feeling well, when you've overdone it. I have heard, gotten advice from people who suggest being very intentional with the language you use around...

the cycles that we go through, right? Because they are cycles, they're not timed regularly, but it happens. We go through a period of time when we're feeling well, or at least many of us do, and then that's followed up at some point with a period of time that we don't feel as well. If we really overdo it, we might have a period of time where we are debilitated.

So words like when I'm having a day like today that I think is a post -exertional malaise situation where I have overdone it mostly cognitively and also physically. took a, which should be typically would have been a short trip with the family this weekend, but it required some effort and that definitely has taken a toll.

but the cognitive stuff, the cognitive exertion definitely triggers my post -exertional malaise. What I'm feeling today is a dip. I often say I overdid it. That's the way I say it. The person who was giving me advice on language suggested using terms like a dip for when you've kind of overdone it like I have versus a

when you're really feeling poorly and it feels maybe qualitatively, if not quantitatively, more severe. So that you can describe it to yourself and so that you can describe and communicate with others of how bad you're feeling. Today what I'm planning to do is talk to you guys.

A goal is to hydrate. That helps me quite a bit. I have these electrolyte solutions that are hydration packets that are very similar to what the World Health Organization distributes for hydration in areas of need and they don't taste good. I don't really like it. It's just very salty, ends up being salty water, but I make sure it's what helps me is to keep it.

cold and to dilute it in a fair amount of water and you know drink that throughout the day and maybe put in a get another one and refill my water bottle and do that again. I cleared my schedule actually that worked out on its own. I had an appointment scheduled today and the person I had the appointment with had to cancel.

So that was, what's the word? Auspicious? I don't know what the synonym, the right synonym is. But that worked out well. I'm in cozy, clean clothes. That makes me feel really good. I thought about the rest of my day, my...

The afternoons are kind of busy in my household. I have two kids who come back from school

I do enjoy that time where they're eating, they unwind and decompress from their day. They both get to meet each other again because they go to different schools and catch up on their day. It's a nice time with people who I love and there's noise in the house and it's...

usually joyful noise. I don't think I'm going to participate in that today. I'm going to be upstairs. The kids can either fend for themselves or if I feel like it after this, I can pull some stuff out of the fridge and have it available to them when they come home. I'm going to rest up and we're going to order takeout for dinner

And on that note, I don't know how it is for you, but food preparation is such an undertaking. It is time consuming for me. I don't particularly enjoy cooking. And yet it is so important to my goal is simply nourishment and

healthy energy storage in my body or energy supply. And there was a long period of time where it was not at all possible. It was not in the realm of possibility for me to prepare food. And in the last few months or six months or maybe for this year, it's become more and more available to me as a task that I can use my energy on. But I...

rarely enjoy it. I don't live in an area that has, you know, healthy, accessible food, takeout food. And I've actually tried quite a bit to find like a personal chef type. And it's I can't find anyone in the area. I would I think that would be a fantastic and very, helpful investment.

But here we are. How do you prepare your food? What is the thing that you want to do in your life that is just not fun? You think it's important, you know it's important probably, but it's just hard to do.

There's a couple of other things I thought about talking about and I think I'll focus on one. The two things were talking about what treatments I'm trying recently and I'll just briefly say I'm seeing fewer physicians recently and more sort of therapists I'm seeing.

physical therapists, I'm seeing two physical therapists actually. I'm seeing a speech therapist. I'm trying to find ways to integrate movement. I've seen an optometrist for my vision that was actually really, really helpful and got plugged into an occupational therapy program to help my vision. Apparently this occupational therapist has seen several.

people with long COVID and as in driving distance of me because I can't fully describe it, but my eyes do funny things when I don't feel well. And I think it contributes to the cognitive issues. And I can talk about all of those things more in depth on future episodes. But what I will end the episode.

saying is that I don't know where you are in your symptom severity right now. I was quite literally bed bound and had difficult time getting from my bed to the bathroom. I collapsed a lot. I couldn't move much at all. And it's been years and I am making improvements and I know

by now that those improvements kind of plateau and they dip it. This journey like life is not linear for good and for bad.

But I am feeling better now than I have since 2019, since the pandemic started. And I'm grateful for that, but it is a continuing project. And here is a challenge that I am noticing now. Now that I am capable of re -engaging in a quote unquote ordinary life again, that has all the asterisks that you'll

you imagine that statement could have. But now that I'm re -engaging in this life that I was kind of pulled out of, I was living in my bedroom pretty much and now I'm in the house more.

I am noticing all those piles, those piles of work, those piles of goals that have been on hold, but have been piling up since I've been locked in that room. I am realizing the extent to which

My husband has been carrying issues with our finances, physical issues in our home.

and managing and guiding, God bless him, our children through school and staying on top of their needs, both their physical needs and emotional ones. These are really big piles. These are like parties that were ongoing and I'm walking into the door like super late. I don't know anybody in the room.

or some people look familiar and I have to reorient to all of these. That experience has at moments felt a little overwhelming. My default mode, as I may have explained in previous episodes, is like I get angry and sort of like blame myself for letting this work pile up.

But those are fleeting. What I'm trying to do is take a step back and look at all these piles.

while my life was on pause, I know people say that, use that term, the universe kept spinning and so I, now that I am re -engage or re -engaging, there's gonna be stuff. There is literally a closet in my home that is just piled with

things from our home that didn't have another place because that was the path of least resistance, a closet that has been filled up with things that could use a clean out that could use organizing. And I think about that as a metaphor for a lot of aspects of my life.

not just, you know, updating the, you know, fixing the doorbell in the house, but also reestablishing relationships that were really affected by the fallout of my disability, reengaging in those relationships in a way that is safe and sustainable for me with my ongoing...

I want to say limitations, but like my ongoing needs.

So I'm catching up and I'm trying to remind myself that this is not unanticipated. This is very natural. This should not be a surprise or if it is a surprise, it shouldn't be a surprise for very long. And the solution is not going to be found overnight. There are little messes around the home. There's a very long to -do list.

in my life and

I feel good that I can tackle some of those now.

Anyway, thank you for listening. That's it for me. My back is starting to hurt a little bit and I need to go lie down.

I hope you're feeling well today. mean, tell me how you're feeling. Tell me what you do when you overdo it. You can reach me on email. Please sign up and subscribe for my sub stack. It is absolutely free. It is of course just gotten started, but there's a few articles up there and I'm hoping that I can put more and more resources there for those of you who like writing. I am keeping the posts quite.

short. These are not long form articles. I don't have capacity for that. I don't really think you do either. And if you do, there's other people who will do that. That's not here. But I think they're interesting ideas and I'm doing my best and putting a lot of effort into them. Anywho, please go get cozy. If not now, then whenever you can.

hydrate yourselves, lie down as soon as you can, unwind, rest, and I'll see you back here next week.