A quick snapshot of chronic illness struggles.
**Not for squeamish readers
I’m sitting alone in my living room, finishing up the TV show I started while eating dinner. It’s been a fairly productive day, but I’m hoping to end by doing the dishes and working on a painting that was commissioned in October. I feel nervous about starting something so late, but eager to get going on it, since my art orders are so backed up. I stand up to go to the kitchen, and feel the all-too-familiar sensation of hot acid careening through my digestive tract. I hope desperately that I’m wrong, but make my way into the bathroom rather than the kitchen.
Flash forward to twenty minutes of horrible pain, nausea, and just trying to stay conscious as yellow liquid fights and burns its way out of my body. After a few bouts, I decide it’s safe to leave the bathroom. I’m not convinced it’s all over, but I at least have a few minutes.
I feel like a hollow shell. The sadness, pain, anger, and fear that I felt just minutes ago have been replaced by dull apathy and exhaustion. Somehow, mixed in, is also a pang of hope. In order to officially diagnose MCAS, you need to do a series of labs -- some urine, some blood. They are inconclusive, however, unless you are able to compare results from a good day to a very bad day. This seems fairly straight-forward, but in the several months I’ve tried to collect such a sample, I’ve run into some issues…
First of all, I am not all that functional when having a bad flare of MCAS. I live down the street from a hospital, so it shouldn’t be that hard to hop in the car and drive the 5 minutes. But what if I can’t stand up? Or leave the bathroom? Or I’m not conscious enough to drive and no one’s with me? Even when I am physically/mentally able, I am often so exhausted or feeling the sense of hopelessness that often accompanies these events that I can’t motivate myself to do it. The next roadblock is that I am usually not home when I get sick. This may seem odd, but traveling is a huge trigger, as are the foods I tend to eat while traveling. As the labs have been ordered at my specific hospital, I can’t just show up at a random clinic out of state and expect them to know which tests to run. Similarly, when I have been home, I typically get sick after the lab closes for the night. My only option then is to go to the ER.
Tonight, the ER had a 3 hour waiting list. No thank you.
So, the blood tests weren’t going to happen, and some of my hope was extinguished. I could still do the urine test, though, since my primary had hooked me up with a collection jug months ago. I cling to the jug like a silver lining and get ready to pee. FYI -- this is a 24 hour urine test, meaning I need to collect every drop of pee for the next 24 hours. I drink a LOT of water, so at this point I’m just hoping the half gallon jug is big enough.
It has pretty minimal instructions, but they say to pee into the provided “hat” and to never pee directly into the jug. I’m not sure what any of that means, but I’m sure I was never given a hat, so I decided to open the jug and see of there’s a funnel or anything inside. As I try to open the small cap, something squirts out and burns my hand. I shout (with a few choice expletives), drop the jug, and run it under cold water. I take a closer look at the bottle and see a hazard sticker showing that there’s an acid contained in the jug that, on a scale from 0 (safe) to 4 (deadly), is a 3 (very dangerous). For dermal contact, I’m supposed to flush with copious water and then seek medical attention. Oh boy. At this point, I notice where it says to not open the cap, so I just try to put it back on. I’m sprayed with more acid and manage to get the cap stuck half on, half off. (Note -- I found out that the acid used as urine preservative is actually nothing to worry about too much unless ingested, but my diseases cause my skin to be thin and quite sensitive)
After reading the materials thoroughly, calling my parents, and burning myself yet a third time, I finally decided that I was clearly missing some hardware and it wasn’t going to happen. I sat back on the toilet and urinated straight into the bowl, feeling a comical amount of resentment at not peeing into a jug.
By this point, it’s well after 10:00pm. I’m exhausted, hollow, and still have some pain/nausea. I give up on getting anything done and decide to just rest in bed. So much for getting work done tonight.
This is why I’m behind in my work and my art. This is why the housework never gets fully done. There’s always something. If it’s not this, it’s the soup I spilled all over the floor when my hand spasmed, or my joints being in so much pain that I needed to lay down. Sometimes I wish my coworkers, customers, and family could see these moments. I wish they could understand why it is that I’m always behind. I’m sure they just think I’m slow and/or unfocused. Or lazy. Yet in reality I’m trying so very hard, it’s just nearly impossible to have a fully day of productivity without something going crazily wrong. I remember snowshoeing with my dad several years ago. We brought along someone who wasn’t in snowshoeing shape and had to go at a slower pace than us. I remember that the challenge wasn’t so much that she had to push to keep up with us, but the fact that every time we took a break, she was still fighting to catch up. She had to march tirelessly for hours, while we got breaks whenever we needed. That is how I feel in these moments -- the rest of the world gets to take breaks. They get to stop and heal or relax whenever needed. I, on the other hand, spend my breaks trying to catch up, to just maintain a basic level of health.
But, this is my reality. And self-compassion is the best medicine I can take. A friend of mine once remarked that she always takes care of herself and rests after getting a cold or flu; she wished that she could just take better care of herself on a daily basis, to avoid being sick in the first place. I’m guessing that if I had let myself rest today, rather than pushing to get work done from home, things may have turned out better. But I didn’t. I was motivated to feel productive, and I don’t need to feel ashamed or disappointed in how I’ve let myself feel. What I need is the acceptance to allow myself time and space to heal, without worrying about the “shoulds” in my head.