My chronic illness friends use the term “real people sick” to refer to illnesses that could affect anyone — regardless of health status — such as a cold, flu, or stomach bug. Often it’s in moments of realization that the illness we experience daily can be so much worse comparatively, like when the whole office is complaining about the terrible cold going around, and we think “wow, I feel like this on a good day!” Usually, though, it comes up as an explanation for why our chronic conditions are flaring: “I got real people sick this week, and now my usual symptoms are freaking out!”
Well, I got real people sick this week, and bad.
It started out seeming like my usual off days. Then I got my COVID-19 booster shot, so when I had horrible body aches and a mild fever I figured it was just a vaccine side-effect. But then my daughter also developed a fever and GI issues. I’m pretty good at pushing through when I don’t feel well, so I spent the first bad days taking care of her. She’s a baby, I was worried about her, and I felt that she needed to be the priority. But as my health quickly crashed, I kept picturing that flight attendant speech about oxygen masks — I had neglected to put mine on, and I was slowly suffocating. I found myself unable to feed her, rock her, or even really stand up. I couldn’t eat. I could barely drink, sipping water slowly to be able to keep it in. I tried to just take it easy. I just need to sleep it off, get my body’s natural healing back on track…
off to urgent care
But after days of losing calories, fluids, electrolytes, and sanity, I needed extra help. And so I ended up in urgent care. Thanks to COVID, no one was allowed to come in with me. I was scared, dizzy, and so very weak. I sat in my chair and cried big sloppy tears when they told my mom to go wait in the car. In my decades of experience being sick, visits to hospitals don’t tend to go well without her, my strongest advocate. Not only did I feel too sick and tired to make it through the ordeal alone, I didn’t know if I’d have the mental clarity to advocate about my chronic conditions if they came up, or the emotional stamina to handle any triggering of past medical traumas. But, I had no choice. So I did the best thing I could think of, and asked for what tools I could get.
I had someone wheel me to the waiting room and, as it was far away from the office, asked how I would reach someone if I needed help. They parked me next to the landline and said if I called from that phone, someone would come help me. I waited for ten minutes in the room with other patients — grateful for my antimicrobial and breathable Mighty Well mask — until I started to feel it coming: the agonizing pain that signals an oncoming onslaught of, well, exploding from both ends. I’ve learned that not everyone experiences this pain, but perhaps the decades of intestinal inflammation with no diagnosis or treatment left them scarred and prone to bleeding and pain. For whatever reason, the pain I experience is excruciating, leaving me laying on the floor in a pool of sweat.
So there I was, in my worst nightmare. In a room of strangers, sweat collecting on my brow as I desperately tried to not make visible the storm raging inside of me. I calmly picked up the phone and tried to call as I’d been directed. Busy signal. I tried again. And again. And as my panic picked up, I knew I was never going to reach them. I finally used my phone to call the hospital switchboard to get directed to the urgent care front desk. After more than ten minutes on hold, I finally reached someone and croaked out something like “I’m going to be sick and the phone they gave me to reach someone isn’t working. Please send someone to help me!” They assured me someone would be right over. Ten more minutes later, when no one had come, a blessedly kind stranger came over and asked if I needed him to go get someone. The door we’d come in through was locked from the inside (…why?) so he had to go out the other door and back around through the main entrance of the clinic, but eventually he returned with a nurse.
She jovially asked me if she could help with something. I did everything in my power not to shout at her that I desperately needed a bathroom. “How come you couldn’t just go by yourself?” she asked. I stared in disbelief. I’m sitting in a wheelchair… She seemed to read my thoughts and asked “Why are you in a wheelchair?” Again, why are we asking this? I’m in urgent care. Do I really need to explain why I can’t stand? All I want is to get to a bathroom…
She finally got me to a bathroom and told me to get up and go. I stood up and, of course, fell right back down onto the ground. She looked surprised and said “wow, you really are quite dizzy, huh?” Oh boy.
a turn for the better
When I came out of the bathroom, she seemed much more empathetic. She even told me to skip the waiting room and got me a room with a bed so that I could wait laying down. I can’t tell you what a difference that bed made, both for my POTS symptoms and my general feeling of being cared for.
It was a long wait from there, but I didn’t mind the hours as much as that first half hour. I was next to a bathroom, with a call button for nurses if needed, and could lay down and let my body regulate its blood pressure. I was also free from the anxiety of being indoors with questionably-masked sick people during a pandemic.
When the doctor finally came in, he was wonderful. He agreed that I probably had a virus of some sort, since my daughter was also sick, and that what I needed most was IV fluids. He also suggested I get tested for bacterial infections just in case, but that it would take a few hours.
He also made it clear that I needed to eat, and gave me some anti-nausea meds to make that possible. I double checked that I was allowed to take off my mask to eat my crackers and he said “of course!” Unfortunately, this message was not relayed to the nurse who panicked when she came in and saw me maskless. She yelled at me for not following the rules. I tried to explain that the doctor had told me to take it off, but in my state, I was not particularly calm.
After a small bag of IV saline and some crackers, I felt like a new person. I could walk again, eat, and think straight. I remembered everything I’ve heard from my nurse and doctor friends this year, about how scary their jobs are right now and how many people yell at them simply because stress levels are so high. I thought about the burnout rates and how the nurses left are stretched extra thin. I made sure to thank my nurses on the way out, even the ones I had found challenging in the moment. They were just doing the best they could in a tough situation, and I can’t ask for anything more.
on the mend
I went home able to shower and feed my baby, and tried to figure out how to follow my doctor’s orders from there. He had instructed me to find an adult rehydration solution to drink or, if nothing else, Gatorade. Well, since the pandemic began, apparently rehydration solutions are near impossible to find, and Gatorade has tons of dyes and chemicals that trigger my chronic illnesses. I could get Pedialyte but, as the doctor put it, “it’s silly expensive for the quantities you’ll need.” Once again, being real people sick and chronically ill was getting dizzyingly complicated. Did I risk dehydration again or risk a flare up?
The next day, as I nervously sipped some green gatorade, I tried to shake the feelings of inadequacy that often follow when I can’t pitch in for my family because I’m sick. I just couldn’t figure out why, after so many days, I was still so sick from a stupid stomach bug. Even my three month old was getting better. And then, the test results came in.
Have you heard about the salmonella outbreak affecting 37 states, caused by contaminated onions? Well, I had joined those infected. My daughter and I had confirmed salmonella. Somehow I felt vindicated. Anyone would struggle to stay on their feet with salmonella. Even an extremely healthy, competent, and helpful person would need to take time for themselves.
But I want it on the record, for anyone reading this and, perhaps mostly, for myself: self care is just as valid for chronic illness as it is for any other condition. We deserve time and healing whether or not we have salmonella. And if it takes two weeks to recover, rather than the typical 6-10 days Up To Date says is normal? Our bodies need what they need, and our self-love and acceptance are the best things we can offer.