A Day In the Life of a Chronic Illness Flare
For the past few years, my life has turned quite upside down as I’ve struggled with my health and finding the proper diagnoses. I’ve had several surgeries for severe endometriosis in the past year and, unfortunately, it seems to be kicking my butt still. I also began to develop extreme digestive issues, gaining the diagnosis of gastroparesis.
Pain is a daily part of my life. Each day is a struggle as I try to figure out how to make myself comfortable with the least amount of flares.
Today is Wednesday, January 22, 2020.
My alarm usually blares the “Parks and Rec” theme around 6:15 am. Like every other morning, I snoozed until about 6:30 am because I spent most of the night tossing and turning, trying to sleep without much luck. I remember moving out to the couch at some point which never helps but hey, let’s try one more time…
Getting out of bed for the first time is rough. I’m weak, incredibly stiff and everything hurts. I managed to let one dog outside to go potty before I got the sudden urge that I need to go, too. Running to the bathroom, hoping that 1) no one else is in there, and 2) I make it time before some sort of accident occurs. Lucky me, the bathroom is open. Not so lucky me, I manage to do nothing but pass gas. Looks like another day of no poop. Great.
6:45 am: While packing the kids’ lunches, a wave a nausea and cramping hits. Thank goodness the sink is nearby because my head is now in it attempting to throw up. I say attempt because it’s more of a constant drooling and spitting while dry heaving because for some odd reason, my body refuses to vomit. I did however manage to get some to come out of my nose. Lovely.
It’s now 9 am and I’ve managed to get both kids off to school in one piece and have spent the last hour spitting up into my basin and wishing the misery would end. Another wave of nausea. Painful cramps and bloating. I can’t seem to take two steps away from my basin without feeling sick.
I normally have PT twice a week, following hip surgery in November, but today is not happening. Instead, I decide to curl up in bed with my dogs, two heating pads and watch Netflix hoping to feel better soon (currently on my watch list is “Cheer”).
10 am: I haven’t been able to swallow my medications in over a week, but I try one of my dissolving anti-nausea meds. I can feel it dissolving and immediately my mouth begins to water and the retching begins. How’s that for irony.
It’s noon. No lunch for me. Solids are still making me awfully sick, so I’ve been trying to stay away. Not that I’m having much luck with liquids either. I haven’t thrown up since I attempted the anti-nausea pills, so maybe it was able to help a little. I’m still spitting like crazy, but that’s relatively normal.
I start getting notifications that some of my lab work from yesterday has come back. Of course everything is wonky, but I’m not sure if it’s wonky enough to cause concern. I’m sure I’ll just get another call telling me everything is just fine.
Since I missed PT, I still want to try to work on my exercises. It’s been incredibly difficult lately because I’ve been having so much pain all over and particularly in my joints. I manage to do a few reps of each exercise before my legs give out, and I have to use the counter for support until I can pull a chair close to me to have a seat while I wait for strength to return.
1 pm: More nausea. I take a sip of water because I feel so dry and thirsty, even though I haven’t been having luck with plain water lately. Cue the “went down the wrong pipe” choke and cough, which then turns into a heaving fit of spit, water and tears. I don’t know if you’ve ever almost choked before, but it is literally terrifying to me.
The awful, stabbing cramps in my pelvic area (thanks, endo!) kick in as well, because why not? Doubled over at the sink, clutching my tummy with one hand and gripping the counter with the other.
Early release today for the kiddos and time to pick up one of them. Since my boyfriend isn’t home today to pick her up for me, picking her up will be a game of a Russian roulette with my stomach. Will I get the sudden urge to poop my pants? Or puke all over myself? Stay tuned and you’ll find out!
I had to refill my collection of plastic bags I keep in my car (along with an extra change of clothes and baby wipes because my stomach hates me) because the watery mouth and sick feeling still hasn’t really left. I’d rather not puke all over myself if I can avoid it. But hey, there have been plenty of times when I haven’t be able to avoid it. Not a good time.
(P.S I survived the trip with minor spit ups! Hooray!)
4 pm: Feeling hungry but terrified to eat. Hoping it goes away soon.
5:30 pm: Managed to eat a small piece of chicken kiev. I took small bites and chewed super thoroughly to help with the swallowing problem, but I still struggled a bit.
6:15 pm: Stomach cramps and uncontrollable drooling begins. Sitting in bed clutching my basin once again. Now I’m kicking myself for deciding to eat a bit today.
8:30pm: Feeling exhausted. Everyone else is in bed already, but I know that going to sleep this early will be absolutely pointless. I can never get comfortable and this flare isn’t letting up.
It’s now 11:37 pm and I’m still awake. I’ve resorted to pacing around the house, sitting down for a bit and watching TV/playing my game/doing absolutely nothing. I’m bloated and feel like a stuffed turkey from the small amount of dinner I had hours ago.
I’d like to say that I’ll be in bed soon, but I’m feeling like this is going to be a long night.
All in all, today was a pretty typical day for me. Even though I’ve been miserable all day, it wasn’t the worst day I’ve had. I was able to spend some time with my boyfriend, which is few and far between since he’s working nights, and I was able to get quite a bit of writing done.
Some days are a bit easier than this. Most days are a lot worse. Chronic illness is so difficult to understand, because often we don’t look sick on the outside. Or we are so used to hiding our pain we now no longer know how to remove the mask.
I wanted to write this piece because, currently, I’m having difficult managing my symptoms so finding a job hasn’t been working out so well lately. Leaving me at home with myself and my thoughts, but also leaving myself open to critiques of people who may not understand.
On the outside, staying home all day every day looks like a vacation and time to relax and have fun. I have been judged for it. So please understand if we stay home because we are having a flareup, struggling with symptoms or having a bad mental health health day… It is not a vacation.
Looking forward to a better tomorrow.
Getty image by AndreyPopov