Down For the Count

I’m entering night three of a bout of unnamed illness, and currently typing from an awkward reclined position because being upright for more than a few minutes is a non-starter.

It’s not vertigo, more like motion sickness, where nodding or turning my head can trigger a hot flash and wave of nausea, and stairs wipe me out completely. The nausea comes in waves, and if you’re new here you should know I had a hysterectomy a few years ago so please don’t congratulate me on my morning sickness. I don’t have a fever, but I very rarely get fevers, so that’s not unusual. The unusual thing is my loss of appetite, which I generally still possess even when I have a major flare of Crohn’s. Today my husband insisted I eat real food since I had insisted on continuing my daily coffee, and fine, but just bread and cashew butter.

I never lose my appetite. In fact, when in the throws of a flare, I often plan a future meal for when the pain has passed. Food is a thrice-daily celebration of life, and if I’m not hungry something has gone terribly wrong. But this time it’s not a flare (thank God) because I don’t have the right kind of pain for that.

The other unusual parts of this plague include sleeping more than I have ever slept in my life, including during the first trimester exhaustion period. I tried to answer a couple emails and fell asleep for three hours, and that was my third nap today after a full night of sleep. I have a headache that never ceases, but because of my Crohn’s I can’t take anything other than Tylenol because the good meds cause ulcers and bleeding in your gut. Before I was diagnosed Excedrin worked well for my migraines, so now I self medicate with Tylenol and caffeine, a key ingredient in Excedrin (hence my insistence on continuing my coffee intake). It takes the edge off, but the headache remains.

You know when you fall down and, even though you can get back up in the moment, the next day you’re sore all over? Perhaps this is just a clumsy person thing, but I know this feeling well. I have felt like maybe I was in a fight or fell down a flight of stairs and every day is the morning after that incident. My muscles hurt, my joints hurt, and also every injury I’ve ever had is suddenly back. I’ve had tendonitis off and on for months and it’s raging. The ankle I sprained in 2018 hurts, and get this — my shin splints from 2012 hurt. So either I’m running marathons and forgetting, or my whole body is in revolt.

I know what you’re thinking, but my initial rapid COVID-19 test was negative, though I am isolating as best I can just in case. Everyone got sick a couple weeks ago except me, and I was starting to think my doctors had overhyped my immunosuppression and I could have been out in the world rubbing my face on strangers this whole pandemic, but here is a mystery illness to put me in my place, eh? Also, if my immune system is not suppressed that means the meds that control my autoimmune disorder are no longer working and I’m at risk of irreversible gut damage and ending up in the ER, so really there are no good options when it comes to that.

The choices are, at present, a nasty virus, or just regular autoimmune stuff I’ve managed to avoid for over a decade. A couple years ago I started following some folks in the chronic illness community and I’ve gotten to see the spectrum of symptoms and limitations these people deal with on a daily basis. Some are bedridden, some will take two days in bed to recover from a short walk on the beach, and some are Olympians. This has nothing to do with effort or drive, it’s more about the vast array of diseases and symptoms that can go with all the autoimmune disorders and other chronic illnesses identified today. I haven’t decided if what I’m experiencing is totally due to my underlying illness, but it’s an unfortunate possibility. Unfortunate because there is no cure for an autoimmune disease and it won’t just pass in a couple weeks like a virus, but fortunate because I could be around my kids and husband knowing that what I have is not contagious.

One reason I suspect I might have caught a virus was the lack of slow decline. For me, there is usually a slide that starts slow and then spirals into a flare. This was more like riding along (slowly, but efficiently) on a bicycle and having a car fling open their door at the last minute, smashing into my body and sending me flying. Tuesday night I was suddenly overheated and sweaty and nauseous and weak all at once. I worried about food poisoning and an obstruction and COVID and everything an anxious and sick person worries about, but have since narrowed it down a tad.

Serious Question: is it just me, or do you think your house is pretty clean and then get face-to-face with your toilet and think, “well I’m going to have to clean this immediately. I can’t possibly throw up in something so filthy.” Yes, I’m seeing a therapist, thank you very much.

My husband is working from home and has been handling the kids in all their wildness, including our three year old who is also sick and can’t go to day care. Luckily, she has a head cold and not whatever demons are haunting my body, but I tried to care for her yesterday so if I’m contagious she is next. She has a lot of emotions, but is also getting special treatment from her doting father and sleeping in our bed at night while I have made the guest room my den of pain. The boys are concerned about all the attention Mary is getting so they have brought up a list of physical complaints to campaign for sick days off school, but to no avail. We take temps regularly to make sure they aren’t sick so we don’t spread germs to their classmates.

In the time of COVID-19 any symptom is scary because however bad I feel, it could kill my neighbor if I don’t do my best to contain it. I’m supposed to take another COVID-19 test tonight or tomorrow, but without a fever I wouldn’t bank on it being positive (I also don’t have a cough or any congestion and I can taste and smell). I took the initial test so we’d know if we needed to pull the kids out of school on the off chance they were also infected, but it could just be that I’ve managed to limp along with moderate symptoms, the worst of which are controlled by my medication, and now all the auxiliary symptoms I’ve managed to skirt since I first got sick are hitting me all at once. People are out there managing chronic migraines! If you’ve had a migraine, can you imagine having them all the time?? I can imagine few things worse. Patients wake up with joints twice the size as when they fell asleep and know that any movement will be severely limited for the time being. Imagine trying to plan and build a life when such uncertainty about how you will feel in an hour exists?

Wear your masks and get vaccinated. The vulnerable among us need our help to protect them.