Episode Transcript
POTS Diary with Michael
[00:00:00] Jill Brook: Hello, fellow POTS patients and magnificent people who care about POTS patients. I'm Jill Brook, your horizontal host, and today we have an episode of the POTS Diaries with Michael. Thank you so much for joining us today, Michael.
[00:00:15] Michael: I am delighted to be here, so I suppose I'm the horizontal guest.
[00:00:18] Jill Brook: If you wanna be, if you need to be.
[00:00:21] Michael: Yeah,
[00:00:22] Jill Brook: whatever you need. We are very flexible here, so we are excited to get to know about you. So let's start with some super basics, like where are you, how old are you? Tell us about Michael.
[00:00:32] Michael: yeah. So I am 34. Last time I checked. I live outside the DC metro area. Yeah, I grew up in Virginia originally. Lived in DC for a bit, moved to Philadelphia, lived there for about six or so years then relocated down to the DC metro area in 2020. And yeah, that's the brief about me.
[00:00:57] Jill Brook: Okay. How would your friends or family describe your personality?
[00:01:01] Michael: I would say highly energetic and enthusiastic. And that's even as a POTSie patient still, somehow I manage to bring a little bit of energy. What little bit of energy I do have to give. I give it.
[00:01:15] Jill Brook: Will it last?
[00:01:17] Michael: No, I do the good old fashioned pacing as always, so that has been a huge adjustment because I've always been a, I'm gonna go, go, go at a thousand miles per hour.
Even both physically back in the day you know, ran a marathon once and used to be one of those people that ran on fumes all the time, which I know isn't good for my health in the long term, but could do it. Now it's running on fumes, but in a different kind of way.
[00:01:42] Jill Brook: Okay. So now I'd like to ask you to brag about yourself. What are you good at?
[00:01:47] Michael: What am I good at? That is a good question. Well, I suppose for starters, I'm good at meeting new people, I think. I think that that's a starting point. I would say, going back to your other question the idea that you meet people who just, they've never met a stranger in their life. I would say I'm that kind of person. You know, You could put me out in the most working class of environments and I would have a blast with somebody by a campfire. Or if you put me in a tux in New York City at a gala, I would have a very good time as well.
So you know, I think I'm highly, highly adaptable in that way and good at my craft work wise, you know, I'm a CPA, love, finance, and accounting in a nerdy, exciting kind of way. It doesn't sound like it's too exciting. But you know, even going way back to my college days, it's just a type of feel that this made sense to me. You know, they talk about accounting being the language of business, and it's just the language that, that always made sense to me from the first time I was exposed to it.
Even in my undergrad year, I was tutoring MBA students in accounting because I just understood so well. I think that would be something else I'd say. I used to be really good at running before this new world took over me. I'd get up at five o'clock in the morning.
Run five miles most mornings, and that was just a nice, casual recreational thing. Even if I had no energy to give again, pre POTSie I would still go out there and do it. The only difference is my pace might be 45 seconds slower per mile, but I would still do the run. I was always pretty good at that and I've taken up woodworking as a hobby.
I wouldn't say I'm quite that good at it yet, but I'm getting there. I'm getting there. It doesn't require quite the expenditure of energy that running does. So that's what I found as a way that I can engage in something outside of work but not have to elevate my heart rate too much.
[00:03:32] Jill Brook: Cool. Okay, so what's something you've made outta wood?
[00:03:35] Michael: So I guess, let me be clear on that. I'm not making really intricate, like, designs of things. I've built storage shelves. I've built like a little mud room in our garage. I redid our pantry shelves. I've made some storage boxes out of wood. Mostly it's been a lot of storage things. We have a house, we have two dogs. We have a five-year-old son. We shop at Costco. So we just really had some space to, that we could use to, to add some storage. And I started with just building some basic storage shelves. And then that just has continued and continued to, you know, hanging other shelves, making bookcases. Again, nothing particularly intricate, but you know, I, something that would probably cost a grand in the store. I can go make it for 70 bucks of materials.
[00:04:23] Jill Brook: It sounds very handy to have you in the household because it sounds like you are very good with practical things and you like doing the finances. That's amazing.
[00:04:32] Michael: Well, you know, good. My wife would say rather annoying because when I start talking about the word budget, then, you know, that's not an exciting word for her. But yeah, I try to be useful from time to time.
[00:04:43] Jill Brook: Okay. And one more thing before we move on. What's something you're passionate about?
[00:04:47] Michael: I would say increase in our social awareness around our country's racial history. And I think, you know, to really go there, quote unquote, you know, as we all know, in 2020, we had these police killings and the whole country exploded. And, I guess what I would say I'm passionate about beyond that is writing. Writing is a hobby of mine. So, you know, you can look online.
I have like a medium page where from time to time when inspiration strikes, I've written for our long COVID patients. So one of the things, actually, let me do that right now if I may.
[00:05:23] Jill Brook: Well, yeah. Cause I was gonna say you also are an advocate for long COVID.
[00:05:27] Michael: Yeah. Yeah. So that is something that I took on early on, but going back to the racial history of our country. I mean, I think during that 2020 time period when, when things sort of exploded and there was sort of a slightly elevated social awareness of what the heck is going on, right.
And it's interesting because I actually went through speech therapy as part of this process. I had to go through speech therapy. Basically learn how to have proper breath support while I talk, talk with a more normal cadence. I'm usually a very fast talker. And, you know, one of the things that we talk about is in speech therapy is we would just talk and that my speech therapist would observe how am I doing with breath I doing with pace, all those things.
When I was sharing a little bit about some of my thoughts, because it's been a fascinating journey of really deconstructing our nation's history and really learning about the things that we did not learn about when I grew up, when I was in school, K through 12, even in college, I mean, there are just, there's so many perspectives, so many black authors like, you know, James Baldwin, Audrey Lord, that's just to name a couple. Everyone knows Malcolm X, I mean, know the name.
Even some of Martin Luther King's, early, lesser known writings. I mean, there's just a lot of interesting perspectives that when you read the vantage point. Black Americans in our country, and you really learn a lot more about yourself as a white American. And it's been rather thought provoking, to say the least, and to realize that there is this whole world in our society that I never contemplated before.
But I do think it's important to become better educated about our history and confront difficult truths, we don't move forward without it. And so, I became more rather passionate about, on top of that is, is in the long COVID community, just trying to be a voice, for our patients.
On top of this Podcast, I've participated in several media stories, whether it be through written article. I did a live special with Al Jazeera and some other ones. I think this long COVID experience has forced me to kind of pick that back up because when I can go out and run five miles, I can sit down for an hour and write. And if I may, now I'm gonna take a moment just to read. This was the first thing that I wrote. This was in July of 2020. And, and I'm gonna go back to one of the, the original things, and it's interesting to revisit this, but there's a person who, as this community knows, especially long COVID suffers.
So, something struck me because what I saw a lot of early on is these patients who were utterly debilitated and, you know, this world from the POTS pre COVID world.
I knew it from my personal experience. But I saw a lot of posts about depression and people just really lost all hope. And there was this one person, she just, pastly made a post about how do you deal with the depression of it all and you know, How do you deal with it?
I still don't know the answer to that. But she made a post about basically how we're dealing with it. And here's what I said in response. After contemplating your query on how we long haulers are dealing with depression, I couldn't help but come back to a vision to which I have grasped tightly throughout this time.
I believe one day, which could be in one, two, or three years time, we, the COVID long haulers will unite and march together in solidarity as one collective body. One group we will march, and then we will stand side by side, grasping one another's hands with exquisite courtesy. We will look into one another's eyes with the indelible knowledge that we. we endured and that we became victors in an almost untenable battle with a most formidable fo. We will all breathe deeply the fresh air and allow it to permeate every ounce of our lungs and body. We will bask in the sunshine and allow it to fill us with warmth and joy. We will smile at one another with an ardent admiration, knowing that we are forever bound by this experience as beloved long haulers, and that we made it to the other side.
We will reflect on all that we suffered, the moments of despair and utter contempt during the lows and the relapses. We will remind ourselves of the moments of joy and hope throughout recovery. Sharing stories within our support groups, realizing that we were not crazy, nor were we alone. Having a good day, feeling normal for a moment, or realizing that we were better today than in previous weeks.
Even if those moments were fleeting at the time, then just like in a movie or a commercial, we will nod our heads in respect to one another, hug the person beside us with unshakable gratitude for their presence in our lives, and we will all disperse and take our next step to the new lease on life that we have been given after our courageous battle.
While walking away, we will all remember the frontline and essential workers who poured blood, sweat, and tears into this battle every day to see us through. We will all remember those brave souls who didn't make it to the other side. With every step that we take, we will remind ourselves that it is our utmost duty and privilege to honor every single person who was affected by this wretched virus.
We will live the rest of our lives, see and through forever changes eyes that allow us to view the world more graciously. We will practice gratitude with an unbreakable fervor. We will not hesitate to be kind or generous. As humanly possible, we will dare not to take a single moment of life for granted ever again.
We will relish in whatever good health and good fortune that we have in our lives. We will no longer allow others to treat us unfairly or unkind because we battle too hard and suffer too greatly to allow that ever again. We will build a world step by step, brick by brick that will be ever more glorious than the one that predated this virus.
Indeed there is hope because we are hope and we will get through this together and live in a world that is kinder, more loving and more equitable. This virus is as sinister as any we've ever seen, but I hold onto this vision that we will create a world like mankind is never known. Once we get to the other side, in an odd way, we will be forever grateful for this experience and we will be even more grateful for the existence of everyone who walks this journey with us. July 4th, 2020.
[00:12:06] Jill Brook: Wow, that's a beautiful, beautiful vision. Do you still feel that optimistic?
[00:12:11] Michael: No, and I hate to be a lack of Beacon of Hope because I would say July 4th, 2020, I thought now, March 2nd, 2023, we would be having that United March and having really good breaths. But I will say that I haven't entirely lost all hope. I think there is, from what I've seen a lot, and you would know better than I would, a lot more interest in research into these type of conditions.
Whether it's under the guise of long COVID, but it very clearly has the overlapping with ME and CFS and POTS and, you know, as high percentage of people are meeting the diagnostic criteria for POTS. And so, do I think that at some point, The science community is gonna figure something out for us?
Probably. You know what? I am optimistic about that, but am I optimistic that that's gonna be anytime soon? Ah, we'll see. At the time, you have to remember July, 2020, I got sick in March, April, May, June, July. This was month four. And many of the first wavers will remember at that time, we always had a hope that it, we were gonna get to month five and be recovered. We were gonna get to month seven and be recovered. We were gonna get to month 10 and be recovered. A year it's gonna recover. Then it just became a milestone after milestone where we would see some people recover and they say, Hey, hang on, 13 months I made it.
You know, I'm on the other side. And there was a group of us that was like, yeah, we can just get to 13 months, we'll be there. And I think it was very much with that optimism that, you know what, it might take longer than any other illness we've ever had, but we will get there. And I think there is a little bit of that that I haven't lost the hope to, but I think the reality of my situation and really I would say an acceptance of the situation has forced me to just reckon with it and say, you know what, this may very well be the best I'll ever get. And I know for me, I'm one of the lucky ones because if this is the best I'll ever get, then I can manage it. You know, I'm not running marathons anymore, but I can work, I can go grocery shopping.
I can walk the dogs. So for me personally, if this is the best I'll ever get, I can't be particularly upset about that, cuz I know there are many who are far, far worse. But yeah, I still hold onto that view. I just think what will be different about that United March that we have is that whereas I thought I would be entirely recovered and even more healthy because of the diet changes that I've made and all these things. I think it would be marching in the same way with the same spirit, but with the type of living with this condition and what is, could likely be a permanent way.
So I think that's what's changed at this point.
[00:15:09] Jill Brook: Right, right. I'm recalling a point in my life where I figured out that improving my life didn't mean trying harder to get rid of POTS. It meant trying harder to make a good life with POTS. And I wish I had figured that out earlier because I think I wasted a lot of time thinking the only good life was one where I got rid of POTS and I was kind of pleasantly surprised, oh, there's a lot of versions of a great life to live. And so abandoning that original, unrealistic one, could have come sooner for me.
[00:15:45] Michael: I think we, long haulers got the benefit from the time that you spent thinking that you might figure it out. I think we get the benefit of that wisdom that you gained that was hard earned and time consuming to learn. I think we got that wisdom a bit earlier, and again, it might've been, somebody might've seen it at month five.
I, I would say I probably didn't get to that acceptance point until probably a good year and a half or so, and I said, you know, maybe I recover one day. Maybe I don't. But I think many would probably say it might very well be one of the most important steps, physical changes aside or physical improvements aside, but mentally, maybe it's one of the most important steps to get to is to say, you know, exactly as you described it. I may not find that life without some type of limiting condition again. But, you know, there is a good life that I can find with the condition, and I think that's the effort that can really improve the mental aspect of this condition. And sadly, Again, I think it's a bit easier for people like me to get there because I still have a certain level of mobility.
I think for the people who are bound to the bed or who have to used wheelchairs to walk around, that is still a much more difficult thing to confront. So I think that while I, I totally agree with you that, you know, that is probably an important place to get to, you know, you kind of have to appreciate that I would not criticize someone if they can't get there, because I still don't know. I remember when I used to sleep for, you know, 18 hours a day, but that got better over time. I've seen people where that has not got better over time, and I just cannot imagine. I cannot imagine being that limited.
[00:17:25] Jill Brook: So what other wisdom have you picked up along the way, either you or the community? Do you think?
[00:17:31] Michael: Well, you know, I will frame it like this. There are some silver linings that have come out of it, and I don't want to be too cliche about it, but, you know, or to use your term wisdom, it really didn't need reframing. But I would say some of the silver linings of it and that we've learned is that one, how important our diet is.
I know you'll appreciate that. When you really dig into our modern day diets and all of the stuff we put into our bodies that were just never meant to go there. You know, it's one of the big improvements that I found symptom wise was when I really did clean up those inflammatory foods, sugar, non-nutritious carbs, even dairy in some cases, a lot of excess caffeine, alcohol. I mean, alcohol's a toxin to your body, right? I used to love a good drink. One of my favorite cities is New Orleans, and I mean, you know, who doesn't love going down and getting a SARE at the SARE bar in New Orleans?
But it's pure toxins that we're putting into our body. It's not helpful. As you very well know, I've significantly cleaned up my diet and tried to eat more wholesome and nutritious foods. And while that has brought about some relief symptom-wise, it's sadly not a cure-all, but it does help.
So I think in appreciation for cleaning up the diet and eliminating things that you just don't need to live is certainly a positive thing, just come out of it. The stress that this long COVID has created, basically, it's just taken off years of your life.
And I like to think that I've probably helped counteract that a little bit with the dietary changes because the lack of alcohol that has not flown through my body, for example, has probably been a huge help to my long-term health. I think that's one thing for sure.
And pacing, I think pacing has a lot of applicability in life that extends beyond managing chronic disease. I was the long distance runner. I was the. You know, 10, 12, 14 hours a day, I was get five hours of sleep, get up, rinse and repeat, you know, drink a few cups of coffee or a tea or whatever it is.
And you know, I just live life hard and I half wonder if a little bit of those conditions are part of what has led to lack of recovery in some way. I don't know. I'm not saying. 80% of the contribution. But I do wonder, you know, have you heard of the work of Gabor Mate?
[00:19:45] Jill Brook: No.
[00:19:47] Michael: Oh my gosh, please, anybody should just look. This man, he was a family physician and I mean he's wrote a few books, but he was a family physician for something like 20 years. Then, Started focusing on addiction and then he started focusing on ADHD and he started getting to the root of how our historical past and our childhood traumas and the way we push ourselves are at the core and root of a lot of the disease that we experience. And he likens that if not all, the vast majority of mental health challenges stem from some type of childhood trauma, and it doesn't have to be, you know, Heavy abuse. It could just mean that you had needs that weren't met as a child.
In the modern day parenting world, for example, in some cases people are taught that you gotta sleep train your child, right? So what does that mean? Fervor method? Let them cry it out. Well, that's Opposite to the innate nature of our being, that when the child cries, they need attachment with the parent.
So what is every other species that has ever existed do, if a child cries, they go pick it up. What does a mama cat do? Picks up the cat, dog. Any animal in this world if an infant is crying, they need that attachment. And we train ourselves to do the opposite. And it just defies nature.
And that, as an example, can be something that even though our hippocampus might not have be developed at a young age. We will internalize that feeling of abandonment and that can manifest in adulthood in various ways. So he's wrote a book called Like When the Body Says No, and I haven't read it in an entirety yet. But there's a theme in his work that basically so many things about our modern societies are antithetical to how we operate as human beings and, and you know, so going back to the idea on pacing, but I make a plug for his work cuz it's just, as a parent, his work it's just been mind blowing to think about it in those contexts. How important the attachment dynamics are for a young child and as a parent and how that shows up in interactions.
But going back to the pacing, I was saying we live life hard and fast in so many ways, but why, you know, what is that doing to us? And I think while I've had to force myself to pace and minimize stress, you know, I also think that has forced me to take a step back and say, you know, maybe I don't need to always work 15 hours a day. Maybe I don't need to get up every morning and run five miles. Maybe I don't need to constantly try to go here or there and be occupied and busy with something, because then you're forced to sit down and confront some realities. And it's something that I've worked through in therapy, for example, you know I put off therapy for a long time.
And a saying goes, you finally come to it when you're ready. You know, what else do you have when you lose your mobility to a certain degree, but to sit with yourself and be still long enough to sit with your thoughts and your feelings, and to start to tend to those and nurture those.
I always had the idea that I really wanted to get into therapy for a variety of reasons of things that have transpired over my life. That was one of the things I finally got myself into, and it's been life changing. I've been able to sit still long enough to, to sit with all that and work through that, I think has been profoundly beneficial.
So I have lost a lot in my physical abilities, but I would say emotionally and mentally, I've also gained a lot. Again, I always put the little asterisk caveat. Again, I can't apply a broad brush to everybody cuz I'm not completely, you know, bedbound. But however, I do think in my case, I've gained a lot emotionally and mentally even though I've lost physical capabilities.
And you know, there's a part of me that, and Gabor Mate talks about this sometimes when people get, you know, chronic diagnoses or terminal diagnoses, whether it's cancer or some other disease. Sometimes you will hear these stories where they say It was the best thing that ever happened to me because it forced me to slow down and change my life and really focus on and heal from things where I used to live a life that was full of coping mechanisms and running away.
And now it's forced me to confront and live life in a different way in a better way. And so I think those are a few, few of the nuggets that I think has come out of this process for the better. And, I do hope that one day I'm able to either through a combination of diet and medications or therapy or both physical and and mental or emotional, or maybe there will be some miraculous drug that's gonna heal us, or maybe I'll be one of those people where you hear about, they catch COVID a second time and it clears it out their body somehow. I don't know. I've seen that. I don't know how valid those statistics are, but I've, there's a portion of people that get it a second time around and it somehow does something in their bodies where for lack of a better way of saying it sort of clears out the bugs that are still in there messing around. So, yeah.
But I think those are some silver linings and things that have come out of it is when physical limitations are present, what else can you nurture and tend to, and yeah. So I think that's, that's an important thing.
[00:25:05] Jill Brook: That's a great attitude. Can I ask, what is the toughest part about having long COVID?
[00:25:10] Michael: You know, I would have to say with any POTS patient, it's just the, the sheer limitation of being able, I mean, like you think about it, I, and here's the weird thing. In my case, I can walk. I'm on beta blockers, but if I keep my heart rate down, I could go out and walk miles.
Seriously, it's not a problem. But God forbid I try to sprint for five seconds. I get a headache and I'm done. It makes no sense whatsoever. I think you're twofold. There's the, the physical limitation, while I'm not limited in some ways all it takes is a little bit of elevated heart rate to just make me feel miserable, which makes no sense to me.
How I could go walk the dog for three miles and not feel as bad as I do if I try to sprint for five seconds. That makes no sense to me. But that is a reality. So I gotta be careful. I'm have an excited, an excitable personality, so I gotta be super careful with that. And yeah, and despite all those silver linings I talked about, there are days where just mentally, I have no idea how to feel.
I have no idea what to think about at all. Because like, even just that example, what if I'm in a situation where I don't know, God forbid the house is on fire and I need to go bust into my child's room and save him. Can I do it? I don't know. That's a pretty extreme example, but these are the kind of concerns that I think people in this community have.
What happens if, I don't know, I'm out on the street and something happens, then I need to get away fast, or I need to run away, or I need, you know, just pick something up. I mean, yes, my adrenaline will probably kick in and maybe gimme of that temporary strength, but I know I'm gonna pay for it afterwards.
So I, I think the combination. Uncertainty, both in the physical limitations and the possibility that I might never fully recover. And the emotional aspect that that follows is probably one of the, the most challenging things for me. Up to this point now, I mean, I've had downs in life, but you know, the downs always kind of came back up in some way, and this is a situation where long COVID patients, POTS patients have these down in these limitations, and there is absolutely very little, if any evidence that those are gonna come back up one day. That we're gonna recover that strength or that endurance or those physical abilities or those symptoms, whether it's orthostatic intolerance or whatever it may .Be we have no, no strong evidence to say that it's more likely than not for example, we will recover cuz we just don't know.
[00:27:45] Jill Brook: Right. Right. So compared to when you were at your very, very worst, what percentage recovered do you think you are?
[00:27:55] Michael: I would say I have plateaued somewhere in the range of about 70 ish percent. I, I would say 70 to 75 percentage. I would say maybe there are some days that I might feel about closer to 80%. There are some days where I maybe drop a little below that 70% mark, but I, I think somewhere in the two-thirds of three fours, and I say that because I can still do a lot. There are still times where I wake up with that unrefreshed sleep, but going back to your point, when I was at my worst, it was literally sleep for 12 hours, wake up for an hour and then I'm exhausted again. So I go to go take another hour nap. Then I wake up again and maybe try to work from home for an hour or two, and then I go take another nap.
It was at the point where, I I mean, I still have chest pains to this day that nobody knows what to do with, but Yeah, I mean, there was that time where I could not breathe. So like a lot of us first wavers we were managing the shortness of breath.
Now it might not so much be lung related, right? We think it's more autonomic nervous system related and muscles around the chest being tightened and strained. But there were those days where I was sleep during the night, sleep during the day. I would wake up and I remember very distinctly just sitting and just trying to, to just catch a breath and, and sometimes it was better for me to just lie down and fall asleep because it was scary to be awake.
Those were some horrifying moments and I think many first wavers will know that, who dealt with shortness of breath, yet we're at home. Doctors have basically said, look, I don't see anything wrong with your lungs, so I don't know what to tell you, but I'm sitting there on the couch at night, let's say, watching a documentary, and I cannot catch a full breath no matter what I do.
So what I do instead is I just lie down and try to fall asleep because if I'm asleep, I can't be thinking about that concern.
And, Yeah. Yeah. And those are the days where, the interesting thing about my experience is I never had a fever, but I was always hot. Like I never had a fever and I never measured fever, but I was hot, I was short of breath.
[00:29:59] Jill Brook: You felt hot.
[00:29:59] Michael: I felt hot. Yeah, I felt hot. I felt short of breath. I had crippling fatigue and exhaustion. I had headaches that never abated. So again, going to your question, compared to my worst, my worst was slept 12 hours a night, poor quality sleep nap 2, 3, 4 times a day, have a headache all day in some fashion. Like I would rotate ibuprofen and Tylenol every four hours or whatever the protocol is, and I'd still never got rid of that headache. It took like a year and a half from my headache to go away. Like, that's a pretty crappy place to be, to live every day with some level of a headache for that extended period of time.
With that level of debilitating exhaustion, with shortness of breath, with chest pains. My knees used to crack when I walked up the steps. They were crackled like Rice Krispies being smushed. They never saw anything wrong, but that was what happened.
So yeah, so I think compared to that, I did get, do a sleep study and I have obstructive sleep apnea. I don't know if I had that before or not, but I sleep with a CPAP machine now. I just got that a couple weeks ago. I think that's helping a bit, getting a little bit better quality of sleep.
So yeah. So compared to those days, yeah, I would say a strong two-thirds to three-fourths of percent, you know recovered.
[00:31:13] Jill Brook: Can I ask, how much of your improvement do you attribute to just time healing your body versus doctors in the medical system helping you versus talking to other patients and learning from them. Cuz some people might be listening to this and saying, two thirds, okay, I would take that. Where do I go looking for my solutions to get there?
[00:31:35] Michael: No doubt. I don't take that for granted that, you know, hey, 75% recovered. I would only dream of living in that point. And I try my best not to take that for granted. I think the secret sauce is largely individualized, but I will tell you what I think to answer your question directly and concretely, I don't know if I could weigh it out in percentage terms, but I would say if I had to give the lion's share of credit to what has helped my recovery, it is the combination of cleaning up the diet. It is learning to pace. So you avoid those PEM crashes, PEM post exertional malaise crashes for anyone unfamiliar, which I'm sure in this community that they are familiar. So the diet, the elimination of putting a lot of toxins into the body, the pacing, but the movement still it's sort of the paradox of having some form of dysautonomia. You know, I think the generic diagnosis is sort of like post COVID in the setting of dysautonomia or something like that. I think the irony is that to the extent that you can move and improve your cardiovascular health, that also seems to help too.
So while you have to pace, you also gotta figure out and however, so gradually one has to do it, to continue trying to move a little bit. and always stopping before you get to a PEM crash, which for a person who has to stay horizontal, then, you know, and do horizontal exercises, that's a whole different game. I can do vertical walking, but I think that is important. And medications, I take a whole combination of medications. I'm grateful that I've had access to medical care. You know, I've been able to go around and experiment with doctors and a majority of it has been covered by my commercial employer provided insurance. But for example, things like low dose naltrexone doesn't work for everybody.
It seems to help me. I even tried the Fluvoxamine experiment. There was some preliminary evidence that patients in the hospital that were on it seemed to have improvement symptoms or a less severe illness.
I double up on antihistamines. I think that's a big changer. So doubling up on the antihistamines, the low dose naltrexone for medication. Caveat. This is not a medical recommendation of what medicines to go take, consult your doctor, all that stuff.
But I think these are things to, if you can find a doctor, want to experiment a little bit I think that is helpful. The banana bag oral solution. Here's a promo for the banana bag oral solution online. I mean, you know, getting that extra salt and the vitamin C and all this stuff that packs in it.
I keep it flowing all day. Oh, you only do like one of those a day, but, you know again, all the extra fluids. So I think the secret sauce, the proportions will probably vary for everybody. Clean diet, elimination of things that make you feel worse, like excess sugar and alcohol and you know, even caffeine in some cases, or dairy, whatever, anything that's inflammatory.
The pacing, the keeping the movement, the increase in the fluids and the sodium and the salt intake. I would also say from a mental and emotional perspective as, as I talked about, trying to tend to, and nurture and, and heal what you can. This situation has forced me to get into Therapy in particular psychoanalysis, to really go back and, and to really learn yourself.
That's what it's about. You gotta understand who you are. When you explore your triggers, you know, what triggers you and when you start excavating the origin of some of those things, there's a lot of aha moments to have. So I think some combination of those things of diet and medication and lifestyle changes, all of the typical things for POTSie.
But it, but I think it's a little dose of everything is what gets to the 75% and time. I think time has to be part of it. You cannot measure the progress like a normal flu or cold.
It's like, oh man, take me a couple of weeks to get better. And it's like, whoa. Remember that? You know, two and a half weeks ago I felt awful. Now I'm good. This is like, oh, remember that like two years ago? it's a very different metric of progress. You have to learn to contend with.
But I do think time plays a part to a certain extent. It might not get you fully recovered, but I have to believe that in some capacity, time plays a part of it. Now, again, what proportion or waiting does that go? I, I think it probably varies for everybody, but I think a combination of all those things.
Or what got me to the 75%. But there's really something else to figure out. Cause I've plateaued at that for like the last year, if not two years. It's been somewhat of a plateau, but there at least.
[00:36:13] Jill Brook: Yeah. Well, and what I'm hearing is that you have put in a ton of effort that you have certainly brought your A game to the fight on all of these fronts, and I'm afraid we only have like a minute left. But I would love to ask you a final question, which is you are kind of one of like the seasoned, experienced old pros at Long COVID, and I'm wondering what do you wish someone had told you when you were new to Long COVID?
[00:36:45] Michael: Well, learned about PEM crashes, you know, because I got into physical therapy with graded exercising at about month five and a half, and I truly believe that actually put me back more than it helped me, cuz I just went through a cycle of PEM crashes and I'll never be able to know for sure.
Right. No diagnostic check on that. But it's not lost in me that I felt like I, I was getting to a point where I was getting better and better. And I almost felt like even at that time I was a little bit better. I was maybe at 75% at times. So I think avoid PEM crashes at all costs and do everything I just recommended early on.
Drink tons of fluids, clean up the diet. Rest, rest and rest. Especially early on. Sleep as much as your lifestyle can allow you to do. Sleep it off. You don't push through this, you just sleep and you rest to the maximum amount possible until you get to a point where you can start to do some of that pace and be talked about.
Clean up that diet, drink tons of hydrating fluids, and Again, find that community. You know, I think that's the other thing we talked about. The support groups are huge, I love my long COVID community patient comrades, friends, family, brothers, sisters, everybody.
I have great admiration and love for them. But you gotta be careful because I think there probably a negativity bias online sometimes, and I don't mean that in a judgemental way, but more than likely it's not the people who have recovered who are going out there to share their great wisdom.
It's the people who are still trying to find answers. And so you gotta be careful not to drown in that either, because you can take that on and, and you gotta be conscious of that. So, yeah.
[00:38:26] Jill Brook: Great advice. Well, Michael, thank you so much for sharing your story and your advice and your insights with us. We so appreciate it and I know that everybody listening is just wishing you all the best going forward and getting that that last 30%.
[00:38:41] Michael: Well, I am so thrilled to do this. Always happy to do it. We gotta figure out a way to, to have these discussions and, and get more reach. Because I, I think, like, to your point, there's still a lot of people who are dealing with this new, and I, I think a lot of us first wavers have pulled ourselves away from those support groups and, you know, you gotta have to wonder how many people are out there still need this perspective.
And I'll make a last plug to the COVID 19 long Hauler advocacy project. Go online, check us out. I've joined that organization. As a board member, we're really trying to advocate. We've participated in legislation drafting and advocating policy change and providing support. C lap 19. Gotta make the final plug. Hopefully you can release that lot of cool things we're trying to do there and everybody else in the community there is support out there.
So let's find it and, and work through it together.
[00:39:30] Jill Brook: Excellent,
[00:39:32] Michael: All right? All right.
[00:39:34] Jill Brook: hey, listeners, I hope you enjoyed today's conversation. We'll be back again next week. Until then, thank you for listening. Remember, you're not alone, and please join us again soon.
