Living with Long Covid 4

How It All Began

This is how it all began. A somewhat pivotal point in my life that will undoubtedly forever alter things.

So after many years of not posting anything on my tech blog, I’ve decided to share my story here in the hopes that it could raise some much needed awareness of the disease.

Let me preface this by saying that I’m a middle-aged active male, no prior illnesses, not a smoker nor drinker but do have seasonal allergies (ragweed, dust, cats/dogs). No prior surgeries or comorbities.

I contracted Covid back in early January ’21. The working theory, my wife, being an elementary school teacher, might have inadvertently brought it home one day. The acute phase was borderline severe in my case. I was completely bedridden for two weeks and had all the terrible Covid symptoms; fever, cough, headaches, extreme fatigue, lost sense of taste/smell, difficultly breathing and pneumonia. Luckily I was not hospitalized, although for a few nights things were really touch ‘n go and worried I’d not make it through the night. Things  eventually started to look up and I went back to work after two weeks. Seemingly, things felt almost right again. I slowly recovered from pneumonia and started to feel slightly better towards the end of February.

Covid damages your lungs.

Soon after, about the March time frame, I developed some sort of facial rash around my nose – an unmistakable redness accompanied with severe burning and pain on the affected area. I continue to feel it in and around my nostrils to this day. It feels like an inflamed burning sensation but without congestion. At times, I also feel severe burning around my lips, and for awhile my bottom lip was disproportionality large and inflamed. I’ve seen three dermatologists concerning my skin. Two said it was seborrheic dermatitis while one is unsure, so no real consensus. Creams do nothing but make things worse and I was assured that it was not Lupus. But I’m not convinced as I truly suspect autoimmune is at play here. I was only given antihistamines but the pain was (and still is) intolerable and has never really gone away. Skin ailments are really painful.

Covid damages your skin.

Weirdly, after regaining my sense of smell (which had come back albeit muted), there was a brief time I continuously smelled smoked – I literally thought something was on fire in the house. Other times, I’d smell an almost decomposing-rotting-meat-Iike smell, I can’t explain it. Odd and off-putting feeling.

Covid damages your nose.

Around that time, I also noticed hoarseness in my voice and energy levels were definitely not like they once were. I also experienced severe itching all over my body and thought, at least at the time, that Covid somehow triggered a new allergy. I later found out that my liver enzymes were out-of-whack and an abdominal ultrasound revealed multiple cysts which likely explained the itching. But during this time, I had only small bouts of neuropathic pain compared to the stories of other “long haulers” I’ve read about, which made me realize how extremely lucky I was (or at least I thought so).

Covid damages your liver.

Fast forward to early May when I got the first (and only) dose of the Pfizer vaccine. I hoped that it would solve all my lingering pains – it didn’t. Right after the shot, I felt sick all over again (as I did back in January) but after 24-36 hours of flu-like symptoms, I started experiencing this weird “pins and needles” feeling (paresthesia) on my left vaccinated arm, then soon after in my chest, then on my back. I freaked out and completely panicked. I thought I was having a heart attack, called 911 and was rushed to the ER (this would sadly be the first of several visits to the ER). They did a ECG and took some blood.

About after two months, the tingling subsided but was now swapped out with a “nerve burning” or “prickled heat” feeling around the same areas. The pain was really, really bad at times. So bad, that I could barely sleep most nights and needed multiple ice packs to distract from the pain. It now manifests as daily, painful, transient rashes that usually subside after a couple of hours – although the pain remains constant. I went back to the dermatologist and lo and behold, I now have another skin disorder; dermatographia. My skin easily reds, pricks and “sleep wrinkles” last for hours. But more so, the pain is truly unbearable.

Over the course of the ’21 summer, many long hauler symptoms I thought I was saved from, have now all appeared – in full force. Extreme fatigue, weakness in the legs, difficulty constructing sentences at times, zero energy, odd chest burning feeling after little activity, labored breathing, palpitations, pressure headaches, broken digestion, sore throat, serious dysphagia (difficulty swallowing), popping and blocked ears and not to mentioned, all the aforementioned skin problems feel much worse. On top of this, some cognitive issues crept up – forgetfulness of words and the struggle at times to construct a full sentence. This unfortunately kicked off a new round of doctor appointments with specialists which ultimately yielded very few answers.

Covid damages your nervous system.

Towards the end of ’21, things continued to deteriorate. I struggle with the simplest form of physical activity – climbing up stairs suddenly felt like hiking up a mountain. A heart MRI revealed signs of peri-myocarditis and POTS (Postural Orthostatic Tachycardia Syndrome), which explains the constant elevated heart rate (high 90’s/100 bpm) and incessant pounding heart. I’m now on heart medication.

Covid damages your heart.

I now live the following daily existence; brain fog, burning skin, eye inflammation, extreme sinus irritation and chronic sore throat, severe dysphagia, burning and coated tongue, silent acid reflux, chest pains, extreme throat dryness, random palpitations, muscle spasms, idiopathic urticaria, headaches behind the eye, flushing, intolerance to heat and cold, tinnitus, shortness of breath, GI issues, blood pooling, limb and muscle numbness and weakness, insomnia, depression and general dysautonomia (an umbrella term for problems with the nervous system). More doctor visits and more blank stares.

Covid damages your whole body.

The most traumatic pain of all I think is dealing with doctors that readily dismiss the symptomatology or are quick to misdiagnose my symptoms as psychosomatic simply because they cannot be explained using conventional lab tests. I find myself pleading, almost begging doctors to find something wrong with me. At least then, I’d have some form of treatment. It’s discouraging and heart wrenching.

Covid damages your spirit.

Usually, I feel really bad by noon and spend the rest of the day wallowing in sorrow, doing almost anything and nothing to distract from the chronic pain. I wake up with tons of eyelid crust in the morning (sorry TMI I know), perhaps due to some new undiagnosed problem or likely due to the fact that I’m constantly in tears. Luckily I have my wife so I’m not truly alone but it’s taking its toll – on me, on her and on everyone close to me. Life’s now a constant, daily, battle.

Covid damages lives.

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4 thoughts on “Living with Long Covid

  • Sabrina

    Thank you for sharing this with us. I hope you will recover in near futur. In the meantime, I wish you the strenght to fight this battre. Take care!

  • Darryl

    Hi Bobby,

    I found your blog through setting up some webcams is fanghacks to watch our chickens — superb instructions there. I then found those dang things glitched out a lot, even the Wyze version, but Wyze also must think they’re pretty cheap and just sends you a replacement and sort of supports RTSP so overtime have migrated to those.

    Anyway, just wanted to say thanks and hope research and treatment continues in the right direction to help your ailments. My young nephew has one of those one in a million autoimmune disorders, and it’s tough. There are good times, though, and those are awesome. I’m sure others who are suffering, amongst all the other noise around COVID, will find your words and experience helpful.

    All the best.

    • bobby Post author

      Thanks for your kind words. My heart goes out to your nephew and the many others who suffer through various autoimmune and chronic conditions. I now understand the tremendous toll such diseases take on oneself and on the surrounding loved ones. I appreciate your warm sentiments, just know that it means a lot.