We expect to fall sick sometimes over a season, or a year. During the years we are raising children, our expectations become certain. Multiple colds, a stomach bug or three, an unknown rash, or a flu, even, are all expected territory. You…and your children…get sick, you suffer, you may even go to the hospital, but you. get. better.

Long Haul Covid is a journey I have embarked on unwittingly and without my family’s permission. Amy Watson, one of my principle support group’s leaders, was inspired when she named us Long Haul Covid Fighters and coined the term “Long Hauler.” So much road already traveled and, throughout those months, the unrelenting symptoms of fatigue, malaise, sore throat, and conjunctivitis just persist with many rising and falling waves, like the storming beaches of a small island, barely taking turns: nerve pain, fever & elevated temperature, body aches/chills, inflammation, histamine intolerance, orthostatic intolerance, brain fog, vasodilation/constriction dysfunction causing discomfort and noticeable changes to my hands & feet, high blood pressure, swelling, low blood pressure, fainting. Dozens more. Secondary infections, strange vitamin deficiencies, fungal overgrowths, and allergic reactions to things you never knew people could be allergic. If that is not enough, Long Haulers have to beware of the “relapse.” Even though I have not had one “well” day in seven months, if my dysautonomia triggers are aggravated, I could, and frequently do land myself in a full or partial relapse which means almost all my symptoms get worse and in full relapse I am as good as bedridden for days or weeks. Partial is not as bad and does not last as long, but it happens much easier and all the time for stupid things. Getting a chill in the mid-70’s evening because I have no normal ability to feel temperature. Sitting on the floor to sort papers a little too long. Sitting at the dining room table after my body gave the warning dizziness. Ovulating.

There have been so many points when the length of time endured and the returning, overwhelming illness both seemed unbearable. 3 weeks, 5 weeks, 9 weeks, 100 days, 4 months, 6 months, 200 days…so I know that now, at 7 months after my start of symptoms, an eternity, might seem like the 3 weeks mark when I look back at it from a year or 18 months. In the spring I kept saying, “Two more weeks…two more weeks and I’ll feel better.” I do not remember when I gave that up and looked ahead to the summer. “The end of the summer is a long way away, I should feel better by then…” Sometime in the summer I knew I was indeed going to make it to chronic, over 6 months, and my expectations would need to be adjusted to something more on the year timeline.

I found myself mid-journey in early autumn in the middle of a world grieving. My world is a daily memorial to those who did not survive Covid-19. I grieve, I pray, I contemplate the lives lost and the lives left. I see a need and I’m the one virtually standing there with ears and a heart. I listen and I help if there is anything my words or listening ears or even actions can do. Long Haulers grieve with each other and struggle to find our way through the morass that is our pain and fatigue filled daily lives and the outside world that hurts our hearts because we all tried to protect family, friends, and community members from the torture we have endured only to see much of the world dismiss our very experience and walk into super-spreader events with sneers and hubris. Our families want to participate in normal get-togethers too, backyard barbecues, beach parties, lunch dates, and not to mention in person school, but we are still so sick from March. I have a true respect for this demon virus and no desire to risk my life again, this time intentionally, and also I’m too sick still to participate in much. If I think about whether I am up to eating dinner at the dinner table each night, on the good days, and often do not follow my self-care instincts, but my mom instincts instead, then going to an event of any kind is not even a possibility.

Long Haulers and Covid survivors with damage or lingering symptoms have the same lives as everyone else and yet we seem to live those lives in a completely different world. This year we faced the same events while in pain and fevered, while our children tell us how their heads or internal organs or chests HURT. With those eyes. Worse than those eyes are the weeks when some of us tried to protect our children and spouses. Weeks we could hear pain, grief, worry, or breakdown, but could not go to our babies.

Too sick in bed, too contagious. I used to pride myself in my power of delegation. Well. There is not much I have left to delegate now. I HATED needing to delegate my comfort and hugs last spring. I am glad to have this ability back, but it was a low point when my 12 year old daughter was giving my 11 year old son as much comfort as she could, and I could not, after the death of his pet, and so much normalcy too.

In March, when the reality of the pandemic hit hope, just in the figurative sense, we even thought we might get a nasty virus. Worse case, we knew we could die from it. Nothing…prepared us, me, for what actually happened. The acute virus was both much, much worse and, also, only the beginning of the nightmarish, multifaceted illness in the same league as scary viruses and illnesses from our history. Again and again the symptoms long haulers commonly suffer are normal for a similar list of systemic disorders including leukemia, diabetes, organ damage, rheumatoid arthritis, lupus, Lyme disease, dysautonomia, multiple sclerosis…and serious viruses like HIV and STDs. Sometimes they list will say “infection” or “viruses” as a possible cause, but often only specific viruses are listed. If researchers pay attention, and do the research necessary, these lists should one day also include Covid-19. That’s where Covid Long Haulers have found ourselves these last 7 months, fighting dozens of symptoms on par with HIV and cancer. All while the world seems to explode like a ripped beanbag chair outside our snow globes.

Nothing was expected back in March, if you recall. We canceled the after-school activities we lead or participated in before we strictly had to. fortuitously, a couple days before my youngest came home from school with unrecognizable Covid symptoms on the last day of school and 9 days before I came down with Covid symptoms. We had multiple events, activities, meetings, and practices planned for the first week that California started to shut down, equating to time NOT spent with around 100 families. In person school shut down rather quickly.

We try to teach our kids a team mentality and to face life changes with flexibility. When life turns upside down, you have to work together as a family, do what needs to be done and change with it. We were trying to be flexible and go with the flow of the events.

What we did not expect, at all, was that our youngest child would actually come into lock-down sick with Covid. We did not know about any community spread in our small town, although now I know there was plenty in neighboring towns where everyone we know does most of their shopping. We still do not know the extent of the Covid spread because lock-down DID happen. It was very fortunate that we shut down as many activities as we did. My son, 8 years old at the time, did come home sick, though, we just had no idea it was Covid. His strange and noticeable symptoms did not start until Monday, March 16th, but on Friday, March 13th he came home merely a little under the weather. I did the mom thing of times past and pushed him into going to one tennis practice and my kids’ one last sleepover. He had no symptoms besides acting tired and not his normal healthy self. I knew as a mom he was not well, but obviously did not guess Covid. Yes, I cringe at the very thought, though when I figured out he had Covid weeks later and checked, everyone seemed to be healthy. I did not even guess it the whole next week when he was sick on a mattress in my room and not when I got sick at the end of the week starting with fatigue, chills, body aches, and extreme shortness of breath, a few days after an bout of diarrhea.

When my son got very sick with what we thought was an allergic reaction because there was no information yet about Covid rashes and he has bad allergies that cause him to vomit. He had a chickenpox-like rash all over his torso and one on his arm, except it was not chicken pox because it did not itch or scab. It did hurt. Vomiting started several days after the rash and lasted two days and lethargy and nausea started. Two plus months of severe headaches and nausea followed that up with a bit of a break and then a return and increase in symptoms for the 6th and 7th months. None of that I could have guessed though from that first week, though it was bad enough. I did not even associate my illness with my son’s for several weeks, not until after dermatology information came out describing his exact Covid rash.

Just before lock-down, my husband and I were worried and careful because I have bad allergies that can give me breathing issues. We were worried I would catch Covid-19 and possibly die if I had compounded breathing problems. The “Coronavirus” was THE unknown. We did not know what to expect. So we did everything to prepare to avoid catching Covid and to prepare in case we got sick. We are a family that combines the forces of multiple forms of scouting, a PhD scientist/engineer dad, and a mom who grew up doing anthropology fieldwork with two linguistic anthropologist parents for entire summers. We prepared…all except for hoarding and toilet paper was the one thing that was totally unavailable before lock-down, so that was one thing we had less of in the house than usual. We did fortify though, we had cold medicine, our regular medicine, and disinfectant. We had soup, electrolytes, flour, yeast, and sugar (we are a baking family). I went to Costco and we prepared to plant a victory garden.

We survived Covid, it felt frighteningly close though, and we survived not going to get supplies in person for seven months, so far. Nothing we did then could have prepared us for the overwhelming nature of Post Viral Covid.

My job has been full. Even the part managing my health, my healthcare, and work…work on getting better. I have other smaller responsibilities, but this has been my focus since I got sick. Only I had no idea it would be like THIS. In some ways I have made progress in others I have failed. I mean, I’m not better, I’m worse and none of my doctors have answers. I am managing some symptoms, though, and not every infection, rash, or symptom is still plaguing me. I’m not at the end of my medical scavenger hunt, but…I AM NOT AT THE END OF MY MEDICAL…investigation! I had to regain confidence and use my will to navigate the Post Covid game of Medical Group Chutes and Ladders. My doctors are all compassionate now and want me to get to a specialist who can help. I feel like I earned my spot now and I will have to earn any further advancement. I am proud of myself because it is not easy to meet a new doctor while sick with no proof besides a paper trail and your own convincing, but sometimes missing words. With my honest plea for help I bring facts, my facts, Long Hauler facts, and Post Covid Dysautonomia facts and the authority I borrow from the awesome doctors at Mount Sinai Post Covid Care. I give doctors what they need to not dismiss me, including a confident if weary presentation. I hold them by the hand until they know who I am and what I need from them on the surface and inside as well.

We are still fighting, inside and out, visibly symptomatic and not. I fought for every minute of medical care, for every hour of halfway normal activities with my family. This fall I miss the traditional activities too. It’s plain bitter to miss back to actual school, trick-or-treating, the pumpkin patch, Thanksgiving, and our every year service projects we are missing this year for the first time in 8 or 10 years. Overlaid all of that for Long Haulers, and their families to a degree, is constant or frequent illness. We are fatigued and even more, we are tired of the forever returning relapses shutting us down and making us start over. We are tired of new, fightening symptoms always starting. Most of all, we are bone weary of the outside world’s frightening aptitude for jumping back into danger like we have not tried to shout a warning with our hoarse voices and the frequent disparagement we get for trying.

I acknowledge the season and my own desires and regrets, and yet I can only keep surviving. Sometimes that is curling up under the blankets unable to read, write, or even think fluid thoughts and sometimes that means putting on jeans, mascara, boots, internal armor, and external confidence, while getting a presentation ready like I am presenting at a specialized conference session for one medical specialist with far more education than I have, but not the information or personal experience.