The Kiss
I remember the kiss. I remember feeling worry. I remember bending down and putting my hand on his forehead. I furrowed my brow and said softly and kindly, “My poor baby!” And, then I leaned down a few more inches and delivered a wet kiss on the oh-so-familiar mouth. It was allergies. My temperature check had validated his self diagnosis. There was no fever. It wasn’t immediate of course; the effect of the kiss was unknown for three days. Then it came as these things usually do - at 3:00 in the morning. The pitch black trip to the bathroom was accompanied by body aches, a headache and slightly nauseous stomach. By the time I sat down on the commode, only one thought was in my head, “Ugh! I feel like I am getting the Flu!” I am not unique. Hundreds of millions of people in the world already got COVID-19 at least once. Some know who gave it to them and when - like me. Others - like my husband - have no idea how they contracted it. He was so careful. Locked in our house, going out only for essentials and always with masks, hand sanitizer and social distancing. After all, there was still no vaccination or treatment, so caution was our only medicine. But, diseases always find a way. Millions lost their lives to this particular disease. Millions more recovered with impacts to their lives ranging from no knowledge of ever having the virus in their bodies to weeks of discomfort that required medical intervention or hospital stays. The Overreaction Then there were those of us whose bodies overreacted. After two weeks of my body feasting at the Covid-19 buffet of symptoms - and I think I had them all - things seemed to ease up. I still had the fatigue, but the rest of the symptoms seemed to be lessening if not in frequency at least in severity. My oxygen level was back up consistently in the high 90s, and I started to realistically contemplate heading back to work. Still feeling a bit tired and weak, I knew I would have to ease back into my full-time job. But, I also knew how amazing my employer would be at allowing me to come back at my own pace. So, two weeks after contracting the virus, I went back to work during the afternoons only and mostly to attend meetings and “get back up to speed” on what had happened while I had been out. This seemed like the best plan, as I was still sleeping 12-14 hours every day, and I wasn’t awake enough until the afternoon to be able to function in a work capacity. I also anticipated this schedule being for a short time - surely not longer than a week or two - and then I would be back up to full time with project deadlines to meet. This well thought out and seemingly reasonable plan fell apart on day one. Maybe I underestimated the energy it would take to get dressed and be “presentable” for Zoom meetings. Maybe I underestimated how little talking I did in my day-to-day life during my illness. Or, maybe I just underestimated how real a thing “brain fog” was and how much it was actually affecting me. Whatever the cause, I sat through my meetings that day with my camera off, my head on the desk and barely listening to what was being said. I continued for the next three days in a similar state of affairs. In the couple of meetings where I put Herculean effort into participating, I had to mute myself constantly between statements because of severe coughing attacks. Other symptoms started appearing, such as severe back pain, crushing headaches, strange digestive issues, and a lack of energy that was hard to explain to people. And, let’s pause here. I have been incredibly frustrated at the description of Long COVID-19 symptoms that all of us can almost recite by heart. As a list of symptoms, they sound like a mild flu that you just need to push through until they let up. But, when those symptoms last weeks - and in my case more than six months - the severity of those symptoms needs to be better understood. So, let me try to give you more context, so you really understand what each of these symptoms does to someone experiencing them:
These nine symptoms defined my daily existence for many months. But, probably the one that made returning to any sort of life (job, family, or leaving the house, for that matter) impossible was the fatigue. What does “fatigue” mean to you? For me, when someone says they are fatigued, I think, “Oh, they are in need of a nice nap.” NOPE! Not at all what it meant for me and so many others dealing with Long COVID. There were three different kinds of “fatigue” that I was dealing with all at once:
The Vaccine As you I am sure you can guess by now, I was an enthusiastic supporter of the vaccine. This was not always the case. I always planned to get it - eventually. But, I had spent some of my career at a pharmaceutical company, and I believed vaccines took a while to develop and test their safety. Of course, mRNA changed all that. But feeling like I had the luxury of deciding when it would be best for me to get it, I had decided I would “probably not be in the first group” of people rolling up their sleeves. Then I contracted COVID and developed Long COVID, and my perspective completely changed. I strongly encouraged my husband to hunt down and sign us up for the shot the day we became eligible. Of course the millions of people that had already received the vaccine before us also comforted me in how amazing this new vaccine development technology was. But, my number one priority was not getting COVID-19 ever again! So, I happily used my small energy reserves one day to have my husband drive me an hour in order to get my first jab. Friends and family were excited for me. They thought the shot might have the happy side effect of ending my Long COVID. Or, at the very least, since I was still struggling with COVID symptoms, then I would probably not get any side effects from the shot as others had reported. Well, COVID is nothing if not a disease with a sadistic sense of humor. By the next morning, I felt the effects. I woke up feeling as I had when I first got COVID. In addition to my LONG COVID symptoms, I also had muscle aches, a low grade fever and nausea. But, my oxygen level remained high, so I hunkered down for the next 2-3 days hoping these new symptoms would pass and not just be added to my long list of “long hauler” symptoms. And, sure enough, three days later I was back to my “new normal” of only nine Long COVID symptoms to deal with each day. Of course, as we all know, there was a second shot to contend with three weeks later. However, by this time in the country’s vaccination process, it was widely accepted that you would only react to one of the two shots, if at all. Since I had reacted so badly to the first shot, I optimistically looked forward to the second shot and being fully vaccinated. Again, we made the hour-long trek for the second shot and marveled at how much the process of getting folks vaccinated had improved in those few weeks. I once again appreciated and wondered where they found such nice, friendly and gentle medical professionals to administer the shots. Both my experiences had been downright enjoyable, despite there being a sharp needle involved. But, this time the reaction was much faster. Within a couple of hours of getting home, I started to feel it. I quickly ran to bed, and tried to ward off the impending symptoms with sleep. It only worked for a few hours. My night’s sleep was ravaged with pain radiating from my head to my toes. I couldn't get comfortable in bed, and I was too weak to get out of bed. In the morning, I lay crying in my husband’s arms that I was sure I was going to die. As the pain in my head brought images of my skull splitting in half, I said my goodbyes to him and gave him instructions on how to raise and care for our children. I was sure I was having a brain aneurysm, and there was nothing left to be done. Perhaps months of COVID had made me believe I was too weak to handle the effects of the vaccine. Perhaps months of COVID made me a bit depressed and ready to throw in the towel. Or perhaps, I was just being over dramatic. But, if you are reading this, you obviously know I survived the second shot. Unfortunately, any progress my body had started to make in eradicating Long COVID suffered a severe blow from the second shot, and I quickly returned to the same health level I had been at weeks prior. I was starting from scratch in trying to overcome Long COVID. But, I was fully vaccinated. It was totally worth it. The Perseverance Long illnesses are tricky. As a society, we are accustomed to ourselves and those around us getting ill. But, modern medicine has spoiled us by making us expect effective treatments of illnesses and, if not quick, then the inevitable return to our former selves. If you get the flu, you have an expectation of feeling lousy for a few days and then being able to return to life. The list of ailments that we, our friends and loved ones face over a lifetime are long. From simple colds to broken bones to strep throat, to chronic conditions such as asthma, we expect these conditions to be minor inconveniences we deal with as we move through our lives. We either fully recover from them or we receive treatments that allow us to keep living the way we want to live (or at least pretty close to the activity level we desire). Long illnesses or major medical crises (such as cancer) can be most upsetting for two reasons: 1) you and those around you have no idea how long you will “feel sick;” 2) and more importantly, your survival is unknown. Because we are able to trust our medical experts so often with such a wide array illnesses throughout our life, this two-tiered ignorance about an illness is terrifying. Fortunately, many people live very long and full lives before - if they ever - experience one of these medical conditions that the doctors are of little assistance in either telling them when they will feel better or if they will survive their particular disease. For those that do live through one of these types of conditions, it does change your outlook. And that’s where I started with Long COVID. A survivor of open heart surgery 15 years earlier due to a heart defect I was born with, I already had experience of rehabbing for 10 months to get back to full health after that surgery. In fact, if I’m honest, I had spent my entire life with the limitations that a heart condition brought every day. While Long COVID might have given me different - and definitely more severe - limitations, it was surely not something that was completely new to me. Born in the 1960s, having a heart condition was practically a death sentence. If it didn’t kill you, then there was certainly no way they were going to fix it. I grew up as a close witness and participant to the advancements made in heart health. From virtually no surgeries being performed on hearts like mine when I was born, to watching existing and new treatments be developed to help me as I grew from child to adult. But, always, there was a push to WAIT. Wait to see what new medicines would be developed. Wait to see what new less invasive and more successful procedures would be created. Wait and see if and when the optimal time was for me to seek full repair of my heart. I watched as the doctors learned. When you enter Long COVID from a place where you spent the first two decades of your life having constant discussions about your health with doctors saying things like, “ We are just hoping we can get her to the age of ten,” and arguing with them about why they should let you be on the softball team or the tennis team at school, you have a different perspective than most. You have been a perpetual patient. And, despite the full heart repair a decade and a half ago, I never stopped being that person. Unlike the early days of being a “heart patient,” I never feared I would die of Long COVID. Not that I am belittling the reality that it had killed so many already. No, I had survived the actual virus. So, I was far more concerned with whether this was going to be the way I had to live for the rest of my life. And, for me, that possibility was not probably as tragic sounding as it may have been to others. I had, after all, lived my entire life with limitations. These would just be much more extreme limitations. And, after all, I had mentally adjusted my quality of life expectations on numerous occasions in the past. Perhaps this mental agility I had developed over the decades was my savior in my battle against Long COVID. As it is, I only spent about four days of the six long months I was sick feeling depressed. And only a couple of those days were severe enough that I burdened my husband with tears and talked of “not being able to do it.” For the rest of the time, I did what life-long patients do. I did what I was told by my health care providers.
But, of course, as a woman with five decades of navigating the healthcare world, I went even beyond their advice. I found a Long COVID rehab program at a local hospital that my doctor had not heard of. Once she was aware, she sent over a referral. To be accepted into the program, you had to have Long COVID for a minimum of three months. I started the program days after my 3-month anniversary of symptoms. When the rehab therapists were at a loss as to what to do about the intensity and frequency of my heart palpitations, I enlisted my cardiologist. He immediately put a holster on me to wear for a month and opened up a channel of communication with my Long COVID therapists. I was free with information about how I was doing day-to-day. I educated them about who I had been before Long COVID, so they would know a “baseline” we were working toward. I worked to keep the therapists, my main doctor and my cardiologist all talking to each other. I did all of this while battling “COVID brain.” I enlisted my husband in helping me communicate coherently. I wrote lists of things I had done and things I still needed to do. I did not trust my brain to remember things, so I would ask if I was repeating something or remembering something incorrectly. I took my therapists’ advice. I did the “homework” they assigned me when we were trying to get my body and brain to do “just a little more.” Even some of the “silly” assignments like sitting outside a little while each day so my skin could get exposure to the sun. I played endless card games to help with memory. I did calf raises as my tea steeped in the kitchen. And I also tried to squeeze in a few minutes each day to practice looking at a dot taped to the wall, looking away and then back to try to train my brain not to get dizzy from that small eye movement. I never missed an appointment. I tried every piece of advice. For three months, my only job was to be a patient. My only job was to service my body, which needed my help. For many people I know, their body is just something that is there. They don’t give it much thought. And, if something goes wrong, they get aggravated and/or frustrated that it’s “weak.” For someone like me, I have never looked at my body that way. From a very young age, I viewed my heart as my equal. As almost a friend and partner. If I pushed myself too much in gym class and it was struggling to keep up, I would literally and verbally apologize to it. As I got older and we got stronger - together - and were playing a tennis match, I would cheer it on. I would say under my breath, “Come on! We got this! We are gonna win this one!” So, in many ways, COVID was not a big leap for me. I would get up everyday. Check in with my body and say, “So, what are we gonna be able to do today.” And, if the answer was, “a little more” than the day or the week before, then I felt like my body was keeping up its side of the partnership. I’ve had family and friends comment many times on how well I was doing mentally when I had Long COVID. They were shocked how upbeat I stayed and how accepting I was of the situation. But, when it came to defeating Long COVID, it simply came down to the fact that it never had a chance. Even if it had lingered longer, I don’t think it would have broke me. I was built for this. My body and I were built to go the distance. The Routine Now, I’m not trying to sound like a superhero. I do not expect the Avengers to come knocking. Nor am I trying to sound superior to those who struggled with both COVID and Long COVID for much longer or with much harsher symptoms. I am very aware that in a lot of ways I was very lucky, both in the mildness of my symptoms and my ability to put my life on hold and completely concentrate on getting better. Unlike so many who are struggling, I had a combination of factors that made my battle with Long COVID only last six months:
We often say it takes a Village. And that is definitely what I had. Now, exactly 10 months after that fateful kiss when I contracted COVID, I only have two lingering symptoms to remind me of it all. While it seems I have completely recovered all my smells and tastes, I have learned through some surprising ways that my nose still doesn’t know it all. Specifically, I am unable to smell a fart - whether it’s my own or someone else’s. In my opinion, a small silver lining the universe let me have after my months of suffering. The other smell that seems to elude me is that of marijuana. I learned this surprising fact when visiting a place where it was legal, and my husband made a comment about smelling it on some young folks that had walked by us. While not as positive as my first missing smell, it is more curious and slightly amusing than impactful on my life. But, distance can also change your perspective. As proud as I am that I made it through the ordeal that was COVID for me, it has brought a fear of COVID that I did not have before I got sick. Not that I didn’t have a healthy respect for it before. There was no vaccine at the time, so we locked down in our house, only going out for necessities. We wore masks, hand sanitized constantly and remained six feet apart from those outside our home. But, my fear now has a fully-in-focus context. I obviously don’t want to get sick like that again. And, part of me wonders if I could persevere again if I did? So, once again, I find myself in that mode of waiting that I had during my childhood. Watching as the medical community learns and develops things to address this virus. Waiting for them to find answers to questions like:
So, as the medical community continues to work night and day to try to answer those questions and many more about COVID, while simultaneously caring for today’s patients, I keep a watchful eye and wait. In the meantime, I work hard to ensure that I will not be a burden to that community again. I am a diligent mask wearer when around others. I still sanitize my hands when leaving anywhere that is not my home. I get a COVID test weekly, because I would never forgive myself if I had it and gave it to someone else unknowingly. And, I have received - and will continue to receive as doctors advise - the booster vaccine shot. My life is also quite different from B.C. (Before COVID). I never returned to my job. I am keeping a slower paced life filled with exercise to keep my body strong, school to re-awaken that COVID brain, volunteering to give back to the village that was there for me, and lots of time with friends and family to soak in what I’ve always known is most precious in life. COVID has left a world in transition, and my post-COVID life is no different. For now, at least, the exhaustion left from the overreaction requires some peace. And I figure with the battle that my body just won, peace is the least I can give it.
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AuthorA former corporate online marketing and communications professional, in 2021 Long Covid redirected me. I am revisiting my passion for writing. You are the unfortunate witness to that journey. Categories
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April 2024
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