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  • Nishat

Living With Long COVID: The Beginning

Updated: Jun 7, 2023



 


So, we’re all familiar with the ever so lovely Ms. Rona right? And frankly, we can’t wait to see her go. Especially me and the thousands of others that have gotten it, gotten over it, AND ARE STILL SUFFERING BECAUSE OF IT. Heh? Oh you heard (or read, lol) me right. I know there’s so much education out there about how to prevent contracting it and what to do if you’ve got it but I don’t see a whole lot about what happens after. To be fair, not a lot of people experience too many complications afterwards aside from the long term loss of smell and taste like my husband who has bounced back and recovered completely. I, however, am one of the not so lucky ones to experience what’s now being called “Long COVID” in which those who are experiencing this are called long haulers. Confused? Surprised? Yeah, I was too.


There’s slowly some education and research coming out about this new phenomenon but what is it exactly? No one knows for sure. My not so medical and totally unprofessional explanation is basically this: long COVID is Ms. Rona’s way of letting you know that you may have won the first battle, but it’s not over yet. The terms “long COVID” and “long hauler” were coined by other patients who are going through it and some have been suffering since last January. Also, you technically aren’t considered a long hauler until you’ve been experiencing symptoms for 3+ months. So, what exactly are the symptoms? Unsurprisingly, it varies from patient to patient. On a good day I’m dealing with overwhelming fatigue, sensitivity to light and screens, joint/muscle pain, weakness, brain fog, headaches, and a very low amount of energy. And that’s not even everything; just the most consistent symptoms. On a bad day...let’s just say everything’s super amplified and I’m essentially flat on my back with my own misery for company. I also get random episodes of my heart rate elevating rapidly which really is just the cherry on top of the COVID milkshake. So yeah, I got past the initial COVID infection and am no longer contagious or “sick” but I’m still stuck in limbo and I hate it here.




 

The symptoms quite plainly suck, but what sucks more is that healthcare providers don’t believe long haulers. Once I was past the 14 day self quarantine and had my initial symptoms resolve; I still felt like absolute crap and so I went to urgent care. A trip made only to have the provider tell me this was all “normal”, I have to “push through it” and that I should see a primary care physician for anything further. Well, going there was my first mistake. My second was listening to that crummy provider and actually trying to push myself to get back to work. This resulted in me turning off my work laptop 20 minutes in because my head was now throbbing, my eyes were unfocused, and I could barely keep myself upright. After dragging myself around to turn off all the lights in the house, I unwillingly slept for several hours and realized that this was indeed not normal. A little research and comparing of doctors later, I finally made an appointment with my current physician but was only able to secure an appointment a week out. In the meantime, I was literally losing my mind trying to do some research. If no one’s told you though, let me be the one to say that this is DEFINITELY the wrong thing to do because I only felt crazier and worse about myself.


With the limited research available, I ended up second guessing myself every second of the day that I was awake. Was I really experiencing all this stuff? Or was it all in my head? Could someone really push through all of this? Is this really normal? Google couldn’t answer my questions. But luckily, my husband came across an article that had a link to a COVID support group for long haulers and that was when everything changed. Once I was approved to join the group by the administrators, I quite literally almost started crying. Here were thousands of people voicing the same symptoms, concerns, and struggles as me. I no longer felt so crazy and I wasn’t alone. Some people have it worse than others in the group and recovery certainly isn’t linear. I was reading posts by people who had gotten COVID way earlier in 2020 and were STILL suffering 10-12 months after. It was like a double edged sword in a way; I found the support I so desperately needed but I also was getting worried and anxious about how long recovery could potentially be. Regardless, validation was oh so sweet and I basked in it.


 

I was pretty apprehensive when I was going in to see my doctor because I had already received the brush off by urgent care like so many other long COVID patients. In a very surprising and refreshing twist - she believed me. I was floored. And I felt something I hadn’t felt in a long time; relief. Not only did my doctor believe me, she said I wasn’t the first to come to her with these issues and she was dedicated to helping us all. The issue with this whole long COVID business is that the symptoms are so similar to other conditions and could be caused by so many different things. Diagnosing is difficult and so is treatment because of that. We ran all kinds of tests but of course, they all came back clear. So the only thing I could do was rest, see some specialists for further work-ups, and not exacerbate myself like I did before by attempting to go back to work when I clearly wasn’t ready to.


Now the absolute worst part of long COVID (aside from the symptoms, duh) is that a majority of the symptoms are internal. On the outside, I look perfectly fine (or so I think) aside from the bags under my eyes from COVIDsomnia and maybe some new chunkiness going on. I don’t “look sick” or really any different. You can sometimes notice little things like when I start to become breathless from over-exhaustion, stammering when I can’t remember a basic word, or when I sometimes lose control of my fine motor skills. But really, if you know me you know that I’m pretty good at putting up a front (thank you past trauma!) so unless I’m explicitly saying what I’m going through; 9 times out of 10 you wouldn’t know. And that’s frustrating as heck.


Don’t get me wrong, I’ll take looking like my normal self and being alive over the unfortunate fate that hundreds of thousands of people were slated all over the world and I’m grateful for it. But I can’t help but wonder, is my health and my life ever going to be normal again? Or will everything be a constant struggle forever? Although I see success stories of people who have finally recovered fully, is it really possible for me to ever be the same?


- Nish



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