A Survivor’s Guide to Surviving Covid

Please Note: I am NOT a medical expert and the information below should not replace your personal doctor’s recommendations. It’s simply a guide to help support you through Covid.

In June, when I was still recovering from Covid, I wrote about “My Family’s Covid Experience.” What I didn’t cover at the time, was that I was still recovering and untangling what I was going through — my heart was still racing, I still had cramps in my legs, random tingles through my body and head, pain in my chest, headaches, migraines, dizziness…I even woke up one day with a numb lip convinced I had stroke. A few weeks after I wrote the article, my hair started falling out in clumps. It took months for it to grow back. Even today, 9 months later, I still struggle with light issues such as memory, pain in my chest and dizziness but I feel lucky everyday to be as healthy as I am.

In summer, as I stumbled through my own recovery, my children had a post-viral inflammatory reaction — a viral rash that lasted for several weeks cause by Covid. I put them on an anti-inflammatory diet and talked to my pediatricians regularly. Finally, after many weeks, the rash dissipated. I kept them in most of the summer to give their immune systems a break. The first time they got a cold after Covid, I crossed my fingers and hoped their immune systems were good to go (they were). My husband, who was actually the only high risk person in the family, has not shown any remnant issues from Covid to date.

The minute that the world opened up a little, we all had full check ups with blood work to assess the damage. We tested for antibodies in June, and all of us except my older son tested positive. Recently, in December, we tested again and 8 months later — only my younger son and I tested positive. My husband lost his antibodies and my older son tested negative again.

When my family had Covid 9 months ago in April, there was no quick google search to help us understand what was happening to us and our bodies during and after Covid. The standard medical go-to-sites had nothing. Truth be told, the articles that were out there were terrifying and lacked practical info for people like us who were actually going through it. What does it feel like? What should we look for? What should we be doing?

Even now the google searches are scattered and often scary. For so many who are recovering from Covid, even the ones that were hospitalized, there is no standard post-care protocol. It’s up to your GP, and hopefully you have a good one. For many, they find their way back to health on their own. That’s why since March, Facebook Support groups have become hives of people exchanging stories and symptoms. You will see real-time trends emerging that are ahead of Covid content in the media and even in the first wave, what the medical community knew at the time because theses polls and posts are not formal studies, but real-time crowd sourced information. Survivor Corps is a Covid support group that does a tremendous job of taking these trends and pushing it into the mainstream media.

In April, as I was going through this experience, I had the great fortune of having good friends who were doctors and scientists that helped me. Some who warned me of the dangers on the road — their information was in real time and it was ahead of what the media was reporting at the time. I connected with Survivors’ groups to help where I could. Since then, in these 9 months, when I am not working or with my kids, I have spent countless hours reading and researching survivor groups, talking to doctors, scientists, other survivors and mothers of children who are having long term issues. If I am honest, I have had nothing less than a massive obsession to learn everything I can about this disease that nearly killed me. I have supported friends, family and strangers through their private Covid battles. Based on all those experiences, I curated a list of Covid FAQs, — which is the basis of this survival guide…

Pre-Covid Prep

You know most of the precautions: wash hands, don’t touch your face, take your vitamins, buy a thermometer, have Tylenol handy etc etc.

Yes, these are all important but the number one most thing you need to order today and now — is an oximeter. It’s $25 and it could save your life. Why? When I had the Covid-induced pneumonia, I didn’t have “shortness of breath” — as they say. I was actually fine — still cooking for my kids and walking around — but my oxygen was dangerously low. The pneumonia is a silent killer, it can suffocate your systems without you realizing. You need the oximeter to show you how the Covid is impacting your oxygen levels. The oximeter is new thermometer for these pandemic times.

I have Covid-19, now what?

1. Rule #1 — Covid is different for everyone. Covid affects your vascular systems, it thickens our blood (which is why people get strokes). (It’s the opposite of Ebola which thins the blood). It uses our ACE2 receptors to enter our lungs, arteries, heart, kidney, and intestines. This also explains why people have such varied reactions to Coronavirus. My husband and I had the same virus but very different reactions. He has high blood pressure and is considered “high risk”, but had a relatively lighter version versus my journey with Covid resulted pneumonia followed by a week hospital stay with supplemental oxygen. If you are looking for support from a fellow survivor, your best bet is to connect to people who have similar reactions to you versus people who have had lighter or heavier reactions as they simply wouldn’t have gone through what you currently have.
2. Sleep on your stomach (Practice Proning): Your first goal for the next two weeks is to not get Covid pneumonia. This means drink hot teas, soups and sleep on your stomach. This tummy sleeping technique is called “proning” (look it up). Doctors recommend it even if you do not (yet) have pneumonia. It allows the lungs to oxygenate and in turn combat the oxygen depletion impacts of Covid.
3. Anti-Inflammatory Foods: Your body has never seen anything like Covid before, so the alarms it sets off are loud and effective, but sometimes perhaps too effective and excessive (which can cause a cytokine storm — look it up). This is why your doctor will likely recommend you take a steroid (to help calm any inflammation that is a natural reaction to viral invasion). To help your body out and compliment your doctor’s medication, consider eating anti-inflammatory foods (berries, fish, olive oil, green leafy veggies, turmeric tablets) and avoid inflammatory foods (fried food, meat, dairy, sugar and alcohol). Besides losing taste, Covid also inflames your digestive system so people often loose a lot of weight even if they are eating (I lost 20 pounds). Remind yourself that you need to keep eating — you need energy for the battle. Drink plenty of water to help your blood flow. Combine this nutrition recommendation with your preferred cocktail of vitamins — this will help now and in the recovery as well.
4. Stay Calm, Stay Positive: Sure, this is seems easy, but when you are facing a dangerous disease that has stopped the world as we know it — it is very, very hard. These are strange times, and not knowing how your body is going to react to the virus is frightening. Switch off the news, distance yourself from anything or anyone that is not positive. Download a meditation app, use visualization to help yourself through, or watch mindless, trash TV, whatever you need to stay calm and positive. You got this.
5. Doctor’s orders: In the NY area, we’ve been exposed to Covid long enough where the doctors are savvy and are quickly recognizing Covid and offering some form of relief. There is still no quick cure or pill out in the market yet, though Dexamethasone or any steroid has been shown to help with the inflammation. If your doc is giving you an antibiotic, it’s for a secondary infection but it won’t help the Covid. Doctors know so much more in this wave than before, but since your time with them is virtual video, it’s up to you to listen to your body and record critical symptoms everyday so they can continue to access your recovery.
6. Don’t wait to go to the hospital: If you feel that something is critically wrong, don’t wait to go to the ER. Check your oximeter at least 3 times a day and if you have low oxygen hovering around 90 — get to the ER immediately. Keep in mind that there will be people sicker than you and there are limited resources, so the hospital will not keep you unless they feel you need their resources to survive. If you go too early in your decline, you may get sent home but don’t let that stop you from going back if your oxygen or symptoms get worse. On the flip side, many people would rather stay at home vs sharing rooms with other Covid patients or being put on a ventilator. The damage you can cause your body by not going to the hospital at the right time can be permanent and lead to chronic issues later on or even death.

Recovery

1. Be patient with your body: It’s been a few days/weeks and you aren’t feeling better. Don’t panic, it’s common. One of the best things I heard Dr. Putrino of Mount Sinai say is that the graph of Covid is not a straight line up. It’s bumpy with lots of ups and downs. Unlearn the expectations you have of your body with a smooth recovery path. This is not the flu. Look at how you felt a week ago vs a day ago. It took me weeks at a very slow pace to get better. When you look at short time frames, it may seem like you are not making much headway, but if you are able to look at how you were feeling a week before, you may see a greater lift. I have heard many stories of people overdoing it too early— going for a bike ride or jog only to end up in bed for a few days straight in recovery. Be patient — your body just met and defeated a virus that it has never seen before. It deserves a minute.
2. It’s a mental game: This disease gets into your head — literally and figuratively. It’s important you know that you are not alone — many people are experiencing anxiety, and depression during their recovery. It took me months to write my original story and there is a reason that people with more intense experiences don’t always publish them. This disease has an emotional toll that takes a bit to recover from, some people suffer from PTSD and others don’t want to talk about it once it’s over. Many people who wish they could just catch it and be done with it aren’t aware of what they are asking for — this is not just a physical fight but it’s a mental fight as well.
3. Advocate for yourself and your family: I was part of the first wave that was observed and tested. I had to fight every step of the way to be treated seriously, to ask the uncomfortable questions, to fight for myself and my kids to be seen by doctors who would tell me that they did not know what it was. I heard “we need to wait and see” and “we are still learning” a lot. Keep in mind, we are only a 6–9 months into capturing data for this in the US — this was not in the medical books — medical professionals, experts and doctors will tell you that they are still learning. Your best bet? Get a doctor who is connected to a hospital system, is reading the research daily and has done rounds on Covid floors. To see this medically is to understand it.
4. Kids are not immune to Covid or long term implications: If you are a parent that has a tough time when your kid has had a bad flu or illness — then you don’t want your kid to experience this. One child of mine had a light Covid experience, the other had all the symptoms — the same as me — stomach issues, low grade fever, heavy chest etc. They both had post-viral reactions 4–6 weeks later — at a time where doctors were just seeing MIS-C in kids. My children being sick was scarier for me than being in the hospital. The children who don’t get MIS-C can get long haul symptoms as well — there are Facebook groups of parents bound together by the common theme that their children are still suffering from the aftermath of Covid. They say the UK identified strain of the virus is harsher on the kids — but having talked to doctors and experts in April — we were not recording, recognizing or even testing the kids in the first wave in the UK or the US — so in my opinion — this statement is a bit of a overstatement. We have simply become better at recognizing this virus in our kids and are now finally connecting the dots. The adult reactions have been more dangerous so that took medical precedence. Yes it is true, that the scale of children getting seriously ill has been much less than adults — but not less damaging. Also it’s important to keep in mind, that we are still learning the long term implications of it all.
5. What’s up with my antibodies? One second you have them and a few months later, they are gone. You wonder if it was all for nothing. Good news: There are many experts who are stating that loosing antibodies doesn’t mean you will get sick again. A secondary layer of protection or T-cell memory may give you some added protection. Antibodies are easier to test for than T-Cells. Many companies are working on developing T-Cell testing. For those who think they had Covid but never caught the antibodies when they tested or for those who lost antibodies after Covid, this test may uncover longer lasting protection.

Post-Covid

1. Disinfect Everything: There are many options beside Lysol and Clorox believe it or not. The EPA has approved many products that kill 99% of viruses including coronavirus SARS-CoV-2 (note: when buying disinfectants, please look for this and not just “kills 99% of bacteria”). After our illnes, we fogged our house to clear it out completely from our lives.
2. When will I get smell and taste back? It varies. Some people get it back quickly while others take a few months. I still don’t believe my sense of smell has come back fully and it’s been over 8 months. Some people even have an altered sense of smell — its called agnosia of smell. Talk to your doctor if this happens to you.
3. Oh, and your hair may fall out. A friend of mine was 3 weeks ahead of the Covid pneumonia journey than me, he told me his hair was falling out. Soon the survivors’ groups lit up with hairloss stories and I had it as well. I have lost hair with my pregnancies but nothing like this — I would touch my hair and it would fall out. In the support groups, people talked about hair fall issues — not just from severe cases, but even light ones. It’s called Telogen Effluvium, your body’s natural reaction to shock. The good news is that (all/most of) it will grow back eventually.
4. Who are the Long Haulers and I am one? In many cases of people who have “Long Covid’’ or are “Long Haulers”. Experts say that a “Long Hauler” is anyone who has had Covid symptoms for at least 6 weeks. It is suspected that “Long Haulers’’ are people whose immune system has fought Covid so hard that it caused “Cytokine storms” — when your body’s immune system goes into overdrive and attacks itself. Not every “Long Hauler” has serious damage. I consider myself to be a “Long Hauler”, but I feel lucky with light remnants of Covid 9 months out. The best thing you can do for yourself and your family is get an appointment at the nearest Post-Covid Care Clinic. Survivor Corps has a map of these by state. (If you are in Manhattan, Mt. Sinai has been doing great work in this space, but it takes 4–5 months to get an appointment, so book during your recovery.)
5. Support Groups: There are many support groups on Facebook for people who are looking for answers for their Covid experience, and just need a judgement free zone to ask questions. Survivor Corps is the largest one and the team there is doing tremendous work. Facebook has a ton of these groups by region, by varying degree of Covid recovery, Covid loss and Kids Long Haulers — find the right one for you and join. If you are looking for more education, Survivor Corps has a great collection of webinars with interviews with top experts who are actively researching Covid and it’s long term issues.
6. Give back: You made it! You are now on the other side. Please consider donating your time to take away the stigma and misconceptions of Covid. Participate in studies (check the support groups), use your voice to educate (share your experience with loved ones and your community), and most importantly, donate Plasma. You can donate convalescent Covid plasma up to 8 times. (Image at the top of this article is my 4th donation.) Yes, its true that the jury is out on how/if plasma is helping patients fighting Covid — but there are two areas where it is much needed and is highly effective: 1. Covid Research 2. Kids fighting MIS-C take plasma infusions that can bring them back to health within a few days. These are two great reasons to participate.

Email me at mrina.nair@gmail.com if you have more questions.

Please Note: I am NOT a medical expert and the information above should not replace your personal doctor’s recommendations. It’s simply a guide to help support you through Covid.