Living With Long Covid – My Story

I feel like I owe you an apology, or an explanation at least. People who know me or who’ve been reading my blog for years know I don’t seem like myself lately, or even sound like the same person.

It’s a struggle to write, or focus at all some days. That’s why I haven’t been sharing daily food diaries like I used to, or able to host a low carb challenge yet this year. *yet! more on that soon (:

This last year has been a serious roller coaster. In many ways, but especially health-wise. It’s been 11 months actually. I got sick on November 17th 2020 with what was just a very mild case of covid – until day 4 when it hit my guts, then my whole system went on the fritz after that.

I was strong, lean, active and healthy when it hit me. But everything went downhill from there. I was symptomatic for months. I tried to stay active (anyway) and get back to my normal life, but the slightest bit of energy spent… would tank me for DAYS afterward.

Video: Day 24 with Covid | Video: Day 44 with Covid

* photo: January 2021

I stopped talking about it last winter because of the backlash 😳 and because I was so unwell off and on. It became absolutely overwhelming, and detrimental to my recovery.

It’s time to share my experience though, and what I’m doing to resolve it (or at least manage it) because A LOT of people are struggling with chronic conditions and various health problems.

Most pain, inflammation, fatigue & health issues can be resolved or at least managed with simple lifestyle changes. So many have achieved RELIEF and better quality of life already.

I’m one of those people, actually. I’ve done it before – twice!

The first time overcoming decades of chronic nerve & muscle pain from a back injury (fibromyalgia / sciatica), and again a few years ago with debilitating gut health issues caused by a flu virus.

Being unwell again after years of health freedom 🤸‍♀️🥰 … was incredibly discouraging. I’ve been hopeful though, given my past experiences, and try to stay focused on recovery & solutions – plus grace and gratitude.

I have “long covid” which is a version of post-viral syndrome with more complex issues. The symptoms come and go in cycles, so it’s been incredibly challenging to track & manage. Especially with extreme brain fog and fatigue. 🥴 But let’s rewind…

*post viral syndrome (“a complex condition that experts don’t fully understand”) * long covid
“It is estimated that anywhere from 15% to 80% might experience long covid after recovering, even if they weren’t very sick in the first place.” “There’s a whole slew of symptoms affecting a variety of organ systems. No organ system is spared from long covid.” –source

On day 6 of covid I had a nervous system malfunction, with all sorts of cognitive issues and neurological symptoms. I got the “hard shakes” (like Parkinson’s), experienced hours of “lost time” and an extreme cognitive disconnect (scary!), making even the simplest tasks incredibly difficult and confusing 🤦‍♀️ basic things like taking a shower or turning on the TV.

Then my heart rate shot up to 178 bpm 🫀 with a hot sweat and throbbing chest, in an obvious cardiac episode. It was bad. It was all very VERY bad, and an intensely scary experience to go through at home alone (in quarantine). I had no idea what was going on.

These “long covid” symptoms weren’t known or acknowledged here yet (then). My doctor told me to go to the emergency room, the ER nurse said stay home, I finally went anyway. They said I was fine and “probably just had anxiety” and told me to follow up with a cardiologist.

I made more calls, but nobody knew what to do. I was still presenting covid symptoms (for months), even though I was over the actual virus. My immune system seemed stuck on a loop, repeating the same symptoms over and over. No doctors were seeing “sick patients” in-office back then (understandably), and just referred me back to ER (I’d already been). It was a lot to manage in my condition, especially with the cognitive dysfunction.

It was all completely exhausting.

Apparently I exhausted my Dr’s office because they stopped returning my calls by late December. Finally in January the hospital administrator sent me a holter monitor to do from home, but then – nobody knew where the results went. Those records were lost for more than 6 months (mis-filed it turns out). It was a frustrating, nightmarish experience.

I was really sick and very concerned, but couldn’t seem to get any help – anywhere.

I was just left to manage it alone at home, on my own.

My whole system seemed to be failing. I felt certain I’d had a stroke, or several. I couldn’t THINK or focus, my vision was blurred, I was off balance and confused. It seemed my heart might give out at any time, my chest pounding and left arm throbbing, me in a hot sweat.

This is what a typical day was like, and still looks like, with frequent spikes in heart rate. This is on an easy day of working at my home office and otherwise napping on and off – absolutely no “exercise” or real physical activity:

Through it all I was calm, in a brain fog, like a zombie state. I felt confused, like I was heavily drugged, which is probably why I didn’t totally freak out.

Most days I forced myself to get up and shower and dress… the way I wanted my body to be found, in case I didn’t get back up. I just kept figuring out a way to make it through the day, one day at a time, week after week.

I couldn’t drive in my condition. I fell several times, but fortunately didn’t injure myself beyond bad bruises. Mostly I just sat still, zoned out, trying to take care of my senior dane and myself.

I made arrangements for him too, in case my heart failed or something. It was just the two of us, and we were both in pretty bad shape. He stuck it out with me, but finally passed away in April. 💔

Those first 5 months were the absolute worst. I couldn’t function. I wasn’t sure if I’d ever recover, or if I’d had a stroke, if my heart was permanently damaged… I had no idea if I’d ever be myself again, or ever be able get to go back to the life I was enjoying so much.

I did everything I could. I rested A LOT. I tracked my vitals, journaled my symptoms, paced myself, sat in the sunshine daily, ate healthy and very low carb – to not contribute to the obvious inflammatory issues. I tried different supplements, etc etc etc.

I did finally seem to start getting better over time – slowly.

I had a lot of inflammation, joint pain, water retention and abdominal distention most days – and even though I was hardly eating, I consistently gained weight month after month.

I noticed slight improvements with every month that went by though. I was even able to start hiking again some late last winter, in the spring, a little over the summer too – shorter, easier hikes at least.

Just being able to get out again really lifted my spirits!

I really thought I was over the hump at that point. I still had ongoing issues, random symptoms, extreme fatigue, frequent heart rate spikes, etc. But I’d seen several doctors by then and all of my tests and bloodwork came out FINE. I was perfectly healthy (on paper).

Fast forward to now, 11 months later, I’m still struggling. I’ve improved A LOT since last winter, but it’s VERY SLOW, and I often have relapses – and different cycles of symptoms that come and go.

Some days I feel okay. Some days I can’t THINK. Some days I crash, my body feels heavy and fatigued, and I sleep 15 hours. And then some days I feel GREAT! Almost normal even…

* I love this shirt! It was a gift from JustMadeKeto

I go through these weird cycles of feeling really good, then tank all over again. Right now I have the shakes. I go from overheated to chilled, back and forth. I have morning nausea, almost daily – and zero appetite most days.

I’m trying really hard to get it together and get back to my life. I miss it – terribly. But I’m also getting through this with grace and patience, focused on recovering – and still hopeful for a full recovery.

These last couple of weeks I’ve been struggling with focus and energy. Before that I was HIGH energy for a couple of weeks, and finally getting back to work, and back to at least an easy home workout.

Now if I try to do 10 tricep dips, it feels like I’ve already done a hundred and I’m trying to do 10 more. My body feels like I just ran a marathon or something. I’m wiped out, easily winded, and – well, it’s taken me SIX DAYS to write this note.

Someone asked me to describe what Long Covid feels like.

My reply: I feel drugged, beaten and run over.

These are the responses from others in the long covid support group:

I can relate, to all of those. It’s incredibly hard. 🥺

I did finally get to see my doctor (in person) and do a third and more extensive bloodwork panel with her recently. We ruled out anything and everything that might have been dormant in my system, or brought on by the virus, including Lyme disease, rheumatoid arthritis, you name it – given my symptoms overlap with so many other autoimmune disorders.

Everything came back perfectly fine – again.

Which was a relief of course, but still left me with no answers.

I also finally got to see a cardiologist, just this past week. Yes, after 11 full months. This was my heart rate on Monday morning (158 bpm) doing nothing at all other than brushing my teeth, getting dressed, just the usual morning stuff – not rushed, not stressed or anything.

My blood pressure, heart rate, etc always test “perfect” at appointments, btw.

This has become my norm. You can see my fingers are puffy (my rings are tight), and I get aching joints and puffy ankles too – a lot of inflammation and water retention. Plus abdominal distension, which is incredibly uncomfortable, along with ongoing miserable gut health issues.

Mostly I have a pretty good attitude and mindset about it all. But some days I’m just sick of being sick 🤪 especially after a string of really hard days. I miss being able to THINK (so much). I love those days where my mind is sharp again. ❣💯

This has been a really tough thing. Some days I feel fine and don’t have most of those symptoms, only to crash for days after that. Every time I think I’ve turned a corner, I tank all over again.

The cardiologist said that my autonomic nervous system is malfunctioning, causing this wide range of seemingly random symptoms. I’m not sure if there’s a fix for that, or if it can cause permanent damage, but I’m going in for more testing next month.

Did I mention most of my hair fell out and broke off?

Yeah… ugh. That’s a common issue with long covid as well.

I tried EVERYTHING – all the “quick fixes” like hair supplements, hot oil hair masks, you name it. I had three BIG bald spots in different areas, the worst one at my crown area.

What HAS worked is time and patience, focusing on “super foods” in my diet (avocado, salmon, blueberries, yogurt, higher protein, etc), and of course collagen.

That’s why you hear me mention “my collagen coffee” in most food diaries.

I’ve doubled up on the collagen, using it twice a day instead of once, and I’m eating very low carb collagen protein bars most days too. It’s working. 🙂

Here’s a more recent (kinda dorky) picture of me:

* I’m wearing easy magnetic lashes – which are new and fun!:)

I miss being active and positive and fun. (consistently) I miss hiking waterfalls, getting out for nature walks, dancing & rock climbing. I miss hosting our low carb community & challenge too (a lot)… motivating people to get started, inspiring people to stay on track and setting a good example with simple food diaries, easy keto meals and FUN exercise.

I felt like that last food diary post I shared with you was a total MESS.

It was just long and rambling, the photos weren’t great quality, it seemed messy and out of order with pieces & parts of the whole story – that just didn’t make a lot of good sense. But that’s me trying to write with zero focus, zero energy, zero appetite. 🤦‍♀️

That’s why I’ve been more quiet lately.

That, and I feel like what I’m eating (to get by in my condition) isn’t setting a great example of how I normally eat low carb, or very relevant to anyone else.

This is the post I’m referring to, the last one I sent you:

Low Carb Food Diary & Keto Meal Ideas
I updated the post some btw, and added videos & recipes that didn’t show up before for some reason.

I said in that post: “I’m not really eating anything that special” or whatever.

But the truth is… I’ve stayed consistently keto through all of this the past year, and I’m continuing to eat very low carb and stay in nutritional ketosis – to help keep inflammation down and get through this recovery better. So there’s that. 🙂

Hopefully that post gave you some ideas to try at least.

The bread cheese is new to me, and amazing! And I love that version/recipe of chicken salad I shared – plus the easy crispy baked chicken thighs recipe and the farm egg scramble.

Here’s what a typical day looks like for me lately though…

This is what I ate on Monday, the day I started writing this to you:

I wasn’t feeling well that morning, but had to get up and get ready for my cardiologist appointment. I had a collagen coffee first thing like I do every day, then I had a collagen protein keto bar (2 net carbs) while I was getting ready – because those help with the mid morning nausea.

Those bars hold me over well as a meal replacement, but if I’m home and a little hungrier, I’ll often have one of the bars with some almond butter and blueberries:

That makes a quick and easy breakfast – that’s also delicious!

I had to rest when I came in from the appointment, then had another (second) collagen coffee – because I’ve been doubling up on that lately to help with my gut & hair issues.

I finally got hungry later in the day but still didn’t feel well (zero energy and extremely fatigued), so I grabbed a “heat and eat” keto meal from Evolve.

That made the perfect late lunch! Plus it’s a very simple, healthy meal.

This meal ^ always settles my stomach for some reason, and helps with my digestive issues, so I usually order at least two of those every week.

I get them from the Evolve low carb meal delivery service. My discount code is LOWCARBTRAVELER if you want to check it out: EatToEvolve.us

You can see my review here with a photo tour of their meals. I just order a la carte, straight from the website menu.

Later that night I felt sick and icky again, so when I got hungry I just had a big tablespoon of natural peanut butter. I like Justin’s almond butter too (that brand is super clean, 2 ingredients).

Sometimes that’s the best I can do, or the ONLY thing that appeals when I don’t feel well. That, or an ounce or so of real cheese, or another protein bar.

I’m using the Perfect Keto bars because I tested those back when I had gut health issues a few years ago, and also this time around. It’s one of the few things I can eat even when I feel bad, and they’re one of few foods that DON’T cause a flare-up for me. So I keep those on hand, always, and use them as a meal replacement a lot. They actually satisfy me and hold me over too, which helps.

I found a secret 45% off page that isn’t showing up anywhere on their website, so I used that to stock up again and ordered 6 more boxes. You can’t beat almost half off!

I ordered another box from Evolve this week too. They added some new meals I wanted to try, like the Pork Chop with Cheesy Broccoli and the Chicken Fajitas with Guacamole – plus my daughter pretty much relies on those heat & eat meals to stay on track, so I added her favorites too.

I love that you can just order only what you want straight off the website, and just pick your favorites from the menu that week. That’s a nice feature I haven’t seen anywhere else!

I wish I was eating more fancy, or had better examples to share with you…

Like this One Skillet Keto Breakfast Hash I used to make that crossed my screen again the other day. 😍 There’s videos in the comments of that facebook post too, if you want to watch me cook it and see how I made it.

Hopefully I’ll get over this recent setback or relapse SOON and be able to cook up and share some better ideas and great new recipes with you. I look forward to that.

I actually have a lot of great meal ideas & super simple recipes to finish writing, so I’ll send those to you and post them on my blog as soon as I’m able. 😉

Thank you for your patience this past year while I navigate my way through long covid, and through solutions & recovery.

It’s such a complex issue, or whole SET of issues. My autonomic nervous system is totally out of whack, which is what controls your digestion functions among other things, like: heart rate, body temperature, and – well, a lot of things.

Here’s a good article that explains it better if you’re interested or having similar issues: Dysautonomia: Symptoms, Causes, Types

I’m not 100% sure there IS a fix, but I feel confident I can definitely find ways to make it more manageable at the very least. And I’m STILL hopeful for a full recovery. 🙂 That’s my goal! xo

Yes it’s been AWFUL, but like I said, I’m consistently improving. I’m MUCH better than I was last winter and early spring. It’s just SLOW and I have frequent relapses or flare-ups.

My immune system is SHOT from all of this, so I’m super focused on living healthy and staying well – and not getting sick with anything else while I work on getting back to a good place.

That includes daily sunshine, simple low carb foods, plenty of water, fresh air, exercise in moderation (when I can), lots of rest/recovery (pacing myself), plus focusing on HAPPINESS and my overall well-being and state of mind. 😉

I’m happy and well, all things considered, and incredibly grateful that I was already working from home, and have had the opportunity to rest and recover, and just ride this out.

I’m grateful too that I have a lot of outdoor space and sunshine here, which REALLY helps. And that I was already eating “anti inflammatory” (very low carb / keto) and know how to help my recovery along through my diet – like I did twice before.

There are people in my long covid support group that have been much sicker than me, for much longer. Some are stuck in the horrible phase I was in the first few months of this. Many have been in that debilitating state for 17-18 months already, which totally breaks my heart (it’s AWFUL).

So yes – I feel very grateful to be seeing improvements, and to have come as far as I have over the last year. Especially seeing some people not recovering well, or at all (yet). 🙁

I hope they find solutions for the tens of thousands of people (? who knows how many) struggling with this “phantom disorder” that seems to elude any testing and leaves us all frustrated and exhausted – and so unwell. It’s a terrible thing to be stuck on the sideline… of your own life. 🙁

Thank you again. I really appreciate our community here…

I look forward to getting back to work, back to writing recipes and sharing food diaries, and I’m hoping to kick off a fun series of year-end mini challenges soon too. 😉

I really appreciate your patience and understanding.

I hope things are well with you.

I hope you are WELL and happy and enjoying this season in life.

I am, regardless of the loss and heartache and illness of this past year – I am. And I’m hopeful, which is the greatest thing you can be.

In closing, if I had just ONE thing I would want you to take away from reading this or from my story, it would be this:

Your health is your greatest asset. 💝

We’re in this together…

Let me know if there’s any way I can support you on your journey, in your recovery process, or with your health & weight loss goals! xo

I’m having a better day today (finally). I’m hoping that continues for a few more days. 🙂 I love the “up” days on this crazy roller coaster, lol. Those are what get me by on the really bad days… waiting for the next easy one! 💕

Best,
Lynn Terry
aka @LowCarbTraveler

p.s. This deal I found on the bars 🔎 Perfect Keto Bars 45% Off “Build Your Own Bundle” Secret Page – I’m not sure how long that will last. It was only up for a short while last time I found it. So if you use the PK bars too, today is a good day to stock up! For everything else, here is the 20% off discount page or use code LYNN20 at checkout for 20% of.

* They have a satisfaction guarantee if you are thinking about trying them for the first time, so you’re in good hands with Perfect Keto. 😉

Here’s a screenshot of my order this week. They’re out of the Birthday Cake protein bars, which are my daughter’s favorite, but I could live on those Almond Butter Brownie bars. 🥰🍫

That was a GREAT deal on the bars. 🙂 Plus the free keto brownie mix, which I’m pretty excited about!

 

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🔎 Shop Low Carb / Keto at Netrition
Discount Code: LOWCARBTRAVELER

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