Smita Shares
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For Long COVID/Long Haulers

Note: I updated this in November 2022, so 2 years after I had the mildest case of COVID which resulted in living through long haulers hell – made infinitely worse by getting the vaccine (J&J in April 2020; I fully support people getting vaxxed but it personally next level messed me up) – for almost 10 months and feeling grateful to be able to say that I am now over a year into feeling 100% most days; there are some days where I will feel a symptom re-emerge (like a sensation in my right temple that can’t even be called a headache but is unpleasant nonetheless) and I am still dealing with changes to my hair in spite of my hair being 75% better than the absolute worst of things (www.covidhairloss.com)

On that note, into the blog on my long haulers experience. If you’ve seen some of my other blogs on the topic, you’ll see that the beginning of this is copied and pasted from my “If You Get COVID” blog, because it is simply too much for me to have to try to change simply for the sake of making each blog different; I’m not trying to impress people but help them. Accordingly, feel free to just skip past this part if you’ve already seen it before.

If you are seeing this in passing, please be sure to bookmark or copy and paste this link to a note on your phone: https://www.smitashares.com/forlongcovid

Just like my last 2 blogs, “Avoid Getting COVID” & “If You Get COVID” this, too, is purely anecdotal based on my own experience with COVID and that of others. Please consult with your physician before doing ANYTHING as it relates to any aspect of your health and especially your care as it relates to COVID. Also, as I did in my previous COVID-related blogs (& will be repeated in every blog as it relates to this topic), I am also going to ask in advance that – if you derive any benefit/value from this info – that you please consider making a donation (any amount helps) towards my fundraising efforts in this GoFundMe; it was no small thing to feel how I had been feeling and put all of this together (6 different blogs) in the wake of such an impossibly trying time, and, more than anything else, I am sharing personal health information – & that, too, as a South Asian where the crux of our existence is “what will other people think” – that most would never share in a public manner for the benefit of others.

& yet I am choosing TO SHARE because – had my only communication been with the healthcare practitioner from the private testing center who called to inform me that I tested positive – the only information I would have received would have been, “take Tylenol for a fever” and nothing else (including no mention of the possible aftermath of COVID known as #longcovid or #longhaulers)

I had NO IDEA that so many people – irrespective of how mild or severe their case of COVID was – experienced an entire slew of long-term effects following their acute/active COVID experience until about 2 weeks after I thought I was done with COVID; the badness in the aftermath hit me like a freight train which resulted in me ending up on Le Google and, for the first time, even learning about “Long COVID/Long Haulers.”

On that note, let us dive right in!

What is “Long Haulers?”

“Novel coronavirus (COVID-19) symptoms can last weeks or months for some people. These patients, given the name long haulers, have in theory recovered from the worst impacts of COVID-19 and have tested negative. However, they still have symptoms. There seems to be no consistent reason for this to happen.”

Re: symptoms (copying and pasting from my “Avoid Getting COVID” blog so if you have read this before skip ahead until you see BLUE)…

Up to 30% (my neurologist – that’s a spoiler alert right there and I’m 41 years old if you’re wondering – said up to 80% :-() suffer lingering/long-term/(presently unknown but possibly) experiencing lingering/even permanent impacts of COVID as it can ravage the entire body’s organs and systems and result in MCAS (Mast Cell Activation Syndrome); whether COVID causes MCAS or just looks like it for a bunch of people who endure COVID is beyond my level of knowledge but see here for more). Or just join any of the COVID groups at the bottom of this blog and scroll through the posts (or just Google “Long Haulers” or “Long COVID” or COVID long-term effects), and you will see that there is not a single (seemingly random to you at present) symptom that is NOT listed.

Here are just some off the top of my head that people experienced/are experiencing anywhere from 2 weeks to THREE YEARS after COVID (people 100% had this in December 2019 if not months earlier; my cardiologist said he believes it was here as early as August): tachycardia (racing heart), shortness of breath/ongoing low oxygen, fatigue, brain fog, cognitive issues (comparable to dementia), impaired vision/taste/smell/proprioception/hearing, (new-to-them) mental health issues (anxiety, depression, & more), physical impairment/debilitation (loss of balance, joint issues), hair loss/hair texture changes, skin changes, loss of teeth (straight up falling out of people’s mouths), nervous system issues, ERECTILE DYSFUNCTION (I love Dr. Fauci but home doctor really needed to mention this when telling people they needed to wear masks; link from Cleveland Clinic), fertility issues, strokes, heart attacks, pulmonary embolisms, blood clots in the brain/lungs, stroke, heart attack, and SO. MUCH. MORE.

Real talk, I love the COVID support groups provided me so much value/emo support and I truly wish I knew about them earlier, but being in them also (hyper-empathy plus imagining every worst outcome possible) became depressing as all get out, so I had to unfollow and only go to them when I need information or am in the mind space where I can (in a healthy way and not to my own detriment) scroll and offer my own insight/experiences.

Back to the aforementioned list of badness… The molecular structure of COVID’s spike protein can – as a result of the “cytokine storm” and the body’s excessive immune response – end up causing damage to the brain, heart, lungs, organs at large which include your gut, muscles, bones, blood vessels, and more. Will everyone experience this impact? No, but, this is IN. MY. OPINION. the truthiest truth… Most folks who test positive for COVID and were symptomatic during or after now have a pre-existing condition, and the medical world will not be able to make correlative/causative statements about the long-term impact for a long time (for example, blood clots in the brain were found in people who died of COVID after AUTOPSY). In other words, let’s say the child/teenager/< 30s person – or anyone of any age including yours truly – who had COVID experiences ANYTHING in the future related to their health, will never know what, if any, impact COVID had.

Honestly, I have had to block that thought out of my mind in order to not spiral (& trust me, I had my spiral moments when it seems like how I felt would be my forever state) into depression and paralysis. &, now, because I am feeling anywhere from 95% like my pre-COVID self (while honoring how deeply so many are still suffering), I’m just telling myself that all is okay/will be okay even though I will never really know how COVID changed the course of my life as it relates to my health while I continue to throw fragranced glitter paint on a pile of poo and try to derive “higher purpose” in my own suffering by doing this share (sharing in hope for the good of others is the way I reconcile most of my life’s most trying times).

Now for my personal post-COVID experience… (For my story re: how I got it & what actual COVID was like for me, please see this #videoshare)

Once I thought I had successfully nipped COVID in the bud, I resumed my normal life as I knew it (MISTAKE or so I believe in hindsight). I believe THAT everyone who gets COVID – no matter how mild their experience with it and even if they test negative – must act AS IF they still have COVID for at least the next 90 days. I know that is a depressing/daunting thought, but if you visit any of the Facebook groups I will mention below or just Google “Long COVID” or “Long Haulers,” you will see countless stories of people who felt COVID was a big old nothing and suffered BADLY in the aftermath.

I fell swoop stopped taking the supplements (my mom, however, did not) and resumed working out aggressively (bad idea as doing so causes inflammation) thought I was back to GOOD again. In about 2 weeks, all the badness began… The worst of it was a headache that felt like someone was slowly squeezing a helmet around my head, feeling like I had worms crawling in my temples, pressure behind my eyes, debilitating brain fog, severe cognitive issues (including memory loss, not being able to find words/do things I commonly do, difficulty articulating/writing) – note: these last two made me weep on more than one occasion thinking life as I knew it was over (not my best life moments but I’m sharing my truth) –  vision issues (difficulty looking at screens and bright lights, trouble driving), neuropathy (tingling in my arms/legs & my left arm kept falling asleep when I would sleep), sundowners effect (this is something that people with Alzheimer’s & dementia experience where they get exponentially worse once the sun, literally, “goes down”), hearing issues (determined by our TV always being on one set volume that never changes and not being able to hear it and not being able to hear when my mom was talking to me), tachycardia (racing heart), hair loss and hair texture changes (my hair, albeit so much better now, turned completely lifeless and is about 1/4th of its original density), and low body temperature (I normally run a consistent 98.6 and tend to feel hot when most people feel cold, but, all of a sudden, my temperature starting running between 96.2 and 97.5 and I was freezing all the time).

I want to pause for a moment to – as mentioned above and in other blogs – reiterate that it is a big (feels scary and uncomfortable) deal to share my personal health information with the whole of the world like this as I do not love the energy of sharing this or feeling like people will see me as “sick” or unwell), but I am doing it because I do not wish for anyone – not even my worst enemy (&, real talk, I have a lot) – to experience this.

Sorry, I digressed…

Because I am trying to get 6 blogs done so that I can go live on my Facebook page, I am not going to go into the detail of every doctor’s visit. It is just all too much, so let’s just say that I went to every specialist (ophthalmologist, cardiologist, pulmonologist, integrative medicine doctor), got nearly every blood work/scan known to mankind (including a chest x-ray and a CT scan for my cough that still persists 3 months later and that I had for one month pre-COVID), and – to my relief but also dismay – nothing was determined as being actually wrong with me other than “long COVID/long haulers” which is this painfully nebulous and tremendously frustrating thing, because…

With all due respect to the entire field of medicine (which my brother and 1000 people I know belong; hello, I’m South Asian), with COVID being so new, I would say the greater majority of practitioners (this is not me dissing on them as it makes perfect sense) don’t know enough about the aftermath of COVID and, accordingly, how to deal with it. The most that was determined was that “my body was still healing,” that I was experiencing “inflammation,” and that this could last anywhere from 6-9 months or FOREVER. For reals, one doctor said that there – if someone was not seeing improvement after 6 months – it was likely they would continue to experience some after effect of COVID for the rest of their lives (I nearly died hearing this).

That being said, the neurologist who I was not able to see until 1.5 months after I first experienced the worst of the brain fog and cognitive/sensory issues said that I would not be in that category as I was already so much better but then I went and got vaccinated because some people were saying it helped “clear long haulers symptoms” and others made it seem like you had to do it (even if infected) because the supply was limited so you wanted to get it if you could.” Note: After being vaccinated in April 2020, the worst of my long haulers symptoms came back immediately but in a TENFOLD more terrible way; my entire body was retraumatized and so much so that I gained 15 lbs in the 2 months following the vaccine.

  • To reiterate, you must (per my belief; holler at your doctor for real advice) – to the best of your ability (fully understanding that everyone’s circumstances do not allow for such) – act like you have COVID for at least 90 days following COVID. So that means everything continuing doing everything you were doing (re: supplements, movement, hydration, anti-inflammatory nutrition, relaxation, rest, mental health, and more) during acute COVID. & I say this because I did NOT do this… Including stopping all of the supplements, I stopped my light daily walks that I was doing while I had COVID, I did not focus as much on my hydration (I don’t know what it is about COVID, but it seems to suck the body DRY), I resumed my normal eating which often included inflammatory foods (gluten, sugar, dairy, fried food, & processed foods), and I resumed hardcore workouts which was a HUGE mistake. While I cannot say definitively, I truly believe that doing these things exacerbated the badness that I experienced in the wake of COVID.
    • This will include NOT resuming full physical activity if you were very active pre-COVID. Go to those groups I will mention below and search on the topics “exercise/gym/workout” and you will find countless folks who resumed running/aggressive workouts/lifting and had debilitating setbacks. Yes, if you are someone who regularly works out, this can be very depressing, but ease your way back into things very slowly as you might – as many people have experienced – be put flat on your back if you go all out trying to resume your “normal” no matter how “back to good/like yourself” you feel.
  • Note: There are folks (like me) who resumed their bare minimum normal. Like simply being an upright and functioning human who could do household/work/life tasks with no issues, and just doing that alone caused me to feel terrible. It is almost as if post-COVID (for many, not all) requires us to do the absolute least which, of course, is maddening and simply not possible for many (& especially those who have to care for others or must return to work outside of their homes to pay their bills; real talk: as much as being at home with my mom is the bane of my existence, it is also the reason I have been have been able to focus on my recovery).
    • Be prepared for very few people – including your nearest and dearest – to fully understand what you are going through. My mom really struggled with it because I could seem “normal” and fully functional one day and then be completely out of it and expressing how much I was struggling the next; in fact, she called COVID my “new crutch” (that being said, she called depression following a major trauma my “crutch” and believed it was just me being “lazy”).
      • On that note, if you are someone’s nearest and dearest, please fully understand that nothing about healing post-COVID resembles a linear trajectory that you may be familiar with, for example, when someone recovers from the flu as there are folks who go months feeling fine and then experience completely new and disconcerting things that they can only attribute to having had COVID.

Now what I’m about to share is going to perhaps seem insane… I am taking/doing EVERYTHING that I mentioned in my “Avoid Getting COVID” and “If You Get COVID” – re: hydration, nutrition, movement, mental health, relaxation, rest – plus additional supplements on top of the already plentiful supplements. It might all be overkill – shoot, it might not even be good for me (I really have no idea!) – but I FEEL SO MUCH BETTER, so here’s my forever disclaimer: this is all my anecdotal experience only and not a directive of any sort. I cannot say for sure how anything I am sharing will work with/react to your body (your physiology based on your pre-existing conditions, genetics, and medications/supplements you already take), so please always consult with your healthcare provider before embarking on anything re: your health & wellness. Please also do not worry if you cannot get all of the things that you mentioned; it is perfectly reasonable (it is actually the most reasonable thing to do) to start with a few things and see how you feel after those and then fold in more thing; I, however, did not do that because of the severity of how I was feeling. It is also perfectly reasonable to get nothing that I recommend in the way of supplements and just nourish your body the way our ancestors healed from things (liquids, rest, & good nutrition)

On that note, I honestly do not have it in me at present to go back to those 2 blogs (Avoid Getting COVID” and “If You Get COVID“) and copy and paste each thing that I mentioned (I will try later, but staring at a screen for this long physically pains me) so please just review them thoroughly. Note: If you plan on getting anything I recommend, I would ask that you please kindly use the links (ideally from a desktop) that I shared; to be forthcoming, I earn a few pennies on each sale, but – as I was basically incapacitated and unable to earn an income for over 10 months – every little bit helps so getting everything while on your computer would be ideal. I will, however, mention the things that I added to those I had already mentioned and believe are so important:

August 2022 Update: Nothing helped me more than eliminating meat, dairy, & eggs from my diet and going WFPB (whole foods plant based). See this blog. What I wrote below is from when I first started experiencing long haulers symptoms but it took me almost 10 months of suffering before – like a light switch – turning it all of with this change in what I was eating. 

  • Benadryl – Disclaimer: This is NOT a longterm solution and can only give you some temporary relief and understanding of what may be going on in your body. That being said, I wish I had taken this after I first began experiencing brain fog and a severe headache both of which were debilitating. However, once I read more about the histamine response (due to Mast Cell Activation), I decided to take Benadryl at night and, I kid you not, but my headache reduced by at almost 80%. I continued this for 3 nights, felt infinitely better and then began an anti-histamine diet (I have not stuck to this 100% – food was my WEAKNESS – but any time I have come off of this, I have suffered). I did not continue the Benadryl beyond this time period and it would be best to consult with your healthcare practitioner to talk about longer term solutions to combat the (very likely) histamine response going on in your body. If you do start Benadryl, be aware that it can cause drowsiness and you may consider taking a half tablet to start with; I held the tablet under my tongue which is likely why I felt a speedier response as it went directly into my bloodstream versus going through first-pass metabolism.
    • GenCare – 600 tablets, $9.99
    • Non-drowsy daytime options:
  • For Neuropathy (my left limbs kept falling asleep and I was getting terrible tingling sensations in my hands); this product nipped that in the bud right away: Dr. Clark Niacin 25 mg (once a day dosing)
  • DETOX: Your body has lived through some things… Likely an abundance of stress, medicines, supplements, and just a whole lot of total body badness, so I strongly recommend doing some kind of gentle detox. My personal favorite is a non-stimulant gentle (won’t make you feel like you’ll poop your pants) cleanse called Activate ($30, but you’ll get $10 off your first order total); I just love this one so much and have tried so many Amazon brands that I have not loved, so I’m not going to recommend any but I’m sure you can find one.
    • Similarly, your liver has been through some things taking all of the above. As with the above, after trying many Amazon brands, my personal favorite is Liver Health ($22.99, $10 off your first order total). That being said, I have no head-to-head studies and nothing other than my anecdotal experience to offer you, so please consider other brands as well.
  • Thorne Undecylenic Acid for GI & Gut Flora Support (Formula SF722, 250 capsules, $36.50) – I’m so sorry but you’ll just have to Google this re: benefits (I believe this helps – along with everything else for your gut health – because COVID can live in your gut for up to 6 months); I don’t remember who recommended it one of the forums and, once I added it, I felt a distinct difference. Ease your way into taking this product versus taking the recommended dosage all at once.
  • Omega 3 Supplement. Key point: Omega 3’s help with inflammation and your body is INFLAMED.
  • ** Awesome VITAMIN HOLDER to organize the above! – $11.99 and definitely helped me, after I learned I was experiencing “Long COVID,” take things religiously **

Lastly, Zencrack – I have mentioned this in my previous COVID blogs and I truly believe that this wellness gadget has helped me so much in these last 3 months and, more than anything else, in keeping my mental health on point because the experience of Long COVID is so difficult and depressing to endure. It is like nothing like anything else (health-wise) that any of us have ever experienced. As for the gadget, I describe it as equal parts meditation, therapy, and hypnosis and it uses binaural waves/brainwave entrainment to make deep impressions on your subconscious. Every aspect of my life has been impacted (my health & wellness, ability to focus/organize, mood, resiliency, and more). Get a 45-day trial ($45 value) to the audio sessions here (the headset is separate and, in my opinion, a huge part of the immersive experience), and you can find all of the science and my brain “before and afters” here and please feel free to contact me on Facebook for more info or feel free to email me at zencrackwellness(at)gmail[dot]com.

While I had COVID, I listened to sessions on immunity, wellness, stress, headaches, and more because I needed to get/keep my head right to keep wanting to try to get better because I felt defeated most of the time; accordingly, I listened to quite a few about having a positive attitude and sessions on headaches/focus/memory, and what was most remarkable was (before discovering Benadryl) was that, I had a splitting headache one day, did a session, and it WENT AWAY.

For 2 other blogs related to post-COVID recovery: COVID Brain Fog & COVID Hair Loss

All that being said and I know it is a LOT, please, again, do not get yourself frenzied obsessing about any/all of this or wrongly believing that not taking/doing any one thing will be the thing that prevents you from recovering. I cannot guarantee recovery from COVID – not for myself and certainly not for anyone else – so everything I have shared was based on my own recovery experience (I am feeling 80-90% than I was before and have even experienced 100% days along with real setback days when I do too much or think I can tolerate eating as I used to).

Lastly…

A REQUEST: If you have derived any benefit from the above, I am kindly asking you to please consider making a small donation to my fundraising efforts here (I am recovering financially from being a domestic violence survivor in a brief 3-month dating relationship in which I was held hostage and suffocated and then spent $60,000 in the legal battle and aftermath while also being laid off 5 times in 3 years). Again, as a “cosmic/energetic/spirtual/good karma” thank you for me taking the time/making the effort to do the #videoshare and all of these blogs which – while I am still recovering from COVID – took everything out of me to do. Any amount – no matter how small – helps and you can donate to the GoFundMe directly or, in order for me to avoid paying fees, via Paypal (pay as friend to paypal.me/smitamoon), Venmo (@SmitaC), Cash app ($smitamoon), or Facebook. 

A few final things:

  1. If you are not the kind of person to doom scroll or obsess but want to see the experiences of those who are newly diagnosed or living through #longcovid/#longhaulers, then check out the following Facebook groups (sharing in order of my favorites): Coronavirus Experience and Recovery, Survivor Corps, Long Hauler Advocacy Project
  2. Other blogs I wrote: www.avoidgettingcovid.com, www.ifyougetcovid.com, www.covidbrainfog.com, www.covidhairloss.com 
  3. In addition to making a donation if you are able, please kindly consider sharing my #videoshare on Facebook or these blogs for the benefit of others. The more people we spare from getting COVID or suffering the worst should they get it/after getting it, the better it is for all of us, because – as I truly believe – “what happens to one of us happens to all of us.”

Thanks for taking the time to read and be and stay well,

 

 

 

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* Disclosure: Smita Shares is a participant in the Amazon Services LLC Associates Program, an affiliate advertising program designed to provide a means for sites to earn advertising fees by advertising and linking to Amazon properties.  Amazon, in turn, offers a small commission on products sold through their affiliate links. Each of your purchases via our Amazon affiliation links supports my being able to share the things I love (& genuinely personally use and recommend to friends and family) at no additional cost to you. 

What about sponsored content? 
I do not write sponsored posts.  I want to bring you real, unbiased information.  However, if a post is sponsored by a company, I will disclose this clearly in the beginning of the post. 

As for my social media pages where I use Amazon & other affiliate links for product recommendations, I will include a link to this post, or put “(affiliate link)”, or #ad in the post. 

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