Learning to Live With Chronic Illness: My Ongoing UC Story
*Warning this chapter talks about my medical experience with my illness. *
Logically, I know something to be true or false. But with anxiety and emotions sometimes Logic doesn't matter. I am frustrated, and I want to cry, scream, curl up into a ball, and maybe I want to punch something. Emotions are messy and strange.
Logically speaking, I can't control my health. My body decided to attack itself, and to fight that I take medication. Medication that makes me prone to more illness. It isn't something that I can just fix.
Was this always the way? No. It could have been started at any point in my life, I can't actually give a definite answer to when my Ulcerative Colitis started. Or if I was simply born with it. I just know when I was diagnosed.
May 2022.
What preceded in my life around the time of my diagnosis was not a good time. Physically and emotionally.
It has been three years since I was diagnosed with UC. There have been good days and there have been bad. There are struggles and challenges, that with time I will overcome them.
The last week has involved some self-evaluations in many aspects, thinking about how I've been going about life and work.
I've been chasing a previous version of myself. Pushing my limits, and not respecting or creating boundaries for the new self. Trying to bulldoze myself back to who I physically once was. There is a chance I can get some of my old limits back. Maybe not have to see doctors so much. But how I've been going about it, won't get me there. If anything, it is more likely to hurl me back into a flare up.
From looking up UC, I know that I haven't had it the worst. The same illness will effect different people in different ways. Also side effects and symptoms can vary within the same person, from flare-up to flare-up, or day to day.
I am not 100% sure when my initial flare-up actually started. Because first of all I was a broke full-time college student, who worked just under full-time. So, I was sadly quite good at ignoring the needs of my physical and mental health.
That is a problem that I still struggle with to this day.
Am I better at it than I was originally? Yes. But I still need to work on it.
Back in 2022 I worked in a retail environment in the fashions department of a "Superstore" and I was sometimes the only person left to work in the department. Because the rest of the staff would constantly get called to the front to help either run registers, or to help cashiers bag. I could not help with that, as I am deathly allergic to onion so can not run a register or bag groceries due to the risk of an allergic reaction. There were times I didn't even realize who I was working with, because they'd get called up for so much of their shift.
I'd be left to put away stock, or if there wasn't stock I would putter around straightening, and folding clothes, picking up the random things abandoned in the department. Maybe going through dusting, or something of the nature. Essentially making sure the fashions department was clean, and any items that don't belong were moved to be returned to their proper location.
There are days were I am honestly astonished I was able to get any work done thinking back. It wasn't quite constant, but I would be in the middle of doing something and then have to sprint to the bathroom, and then proceed to have painful diarrhea and blood come out. And then when I wasn't sprinting to the bathroom there would be times when a sharp pain would hit and I would double over in pain, tears coming to my eyes.
There were days that I slept less than 4 hours, because I'd wake from pain or have to run to the bathroom. And the heat. My stomach radiated heat. I would dampen a washcloth, paper towel or a hand towel and lay it on my stomach to help with how warm I was.
Looking back it is no surprise that the worse the pain got, and more I was running to the bathroom and sleeping less and less that I started also having panic attacks more. Add on that I was more or less surviving off of popsicles. They were just about the only I could manage to eat. Everything else just made my mouth dry up, or made me want to gag. I tried just about everything, because I knew I needed to eat. I tried eating favorite foods, new foods, fast foods.
I can't tell you how much money I wasted, trying to eat just to end up taking one or two bites and then throwing it away. Sometimes I'd be trying to eat and then have to sprint to the bathroom and then I'd lose my appetite.
The blessing in disguise was getting fired from my job at the time. It majorly sucked. I officially graduated from college and lost my job in the same weekend.
But because of that, I had no excuse not to go to the doctor. They got me in immediately, and I had to get blood work done for the first time. I had to do stool tests.
And the results were... They were not good.
There were tests that were registering so high that the result was just "greater" than the highest number it went to. The inflammation levels in my body were extreme. The following week, after all tests had come back, I saw a G.I. specialist, and forever burned into my memory is a moment from that appointment.
The doctor was looking over my results, and then would look at me, the genuine surprise on his face and the words that came out of his mouth "You look really good considering your blood work." The next day I went in for a colonoscopy and an endoscopy.
That was a little over three years ago. I've gone through a couple jobs, moved in with my mother, and tried several medications in these last three years.
My struggles with my health might not be to that point once more, but they could. If I don't listen to my body. And follow through on the boundaries I create.
Some of you reading this might be wondering what has brought on this self-reflection, self-evaluation?
A choice was made for me, regarding work and its relationship with my health. My manager at my current, and soon to be former, job took me off the schedule so that I could "Focus on my health."
The thing to know about Ulcerative colitis, is that it has no cure. With correct combination of diet, and medications, and physical activity it can be in "Remission". But it will never go away, not truly. It is an immune disease. For some reason my body decided to attack itself, and now I can't eat a salad without the risk of having to sprint for the bathroom.
The medication that I take, to help me be not running for the bathroom or in pain constantly, is an immune suppressant.
Either one of these means I have a compromised immune system. One of the warnings when one starts the types of medication that I am on is risk of infection.
Before I could start my current medication I had to get blood work done that tested for things I'd never even heard of. The tech who drew my blood asked me why I needed to get these tests done, and also said she'd never had to draw blood for some of the tests. So I have to yearly get tested for diseases that most people will never have to worry about, but if I get exposed I'm at high risk.
If a co-worker gets a cold, I'm more likely to catch it than most of my co-workers. Customers come in sick? Guess what there's a chance I'll catch it and my co-worker wont. There is always a level of chance of getting sick when around someone who is sick for anyone. It just so happens that my chances of getting sick are higher.
So that means I am sick pretty often, especially since I am a cashier. I handle money, touch every item that a customer touched, have people stand with just the register or counter between us, breathing in my direction.
If I am sick, I call in to work, especially if I'm puking. Or if my cold has progressed and I can't breath well, or have a constant head ache. In part because I don't want to get others sick. And because I know if I don't take the day and let my body rest, it will get worse or be prolonged. I know this from experience.
Maybe I could go into work, but then I'll be sick longer. Versus if I call in, I take that day to rest, and let my body heal, I'm out one or two days. Instead of battling a cold for two weeks and it turning into pneumonia.
I shouldn't have to explain that if I'm puking, I'm not working part. That should be self-explanatory.
Or knowing the limits of my body, and saying I can only work two to three days, and then turning around and saying "yes, I'll come in" when someone else calls off. Without taking a few minutes to think it through. If I had just paused and taken a minute, instead of just trying to be helpful and a people pleaser, I would have thought about how my body would react. Most of the time it reacts negatively.
This last week has helped me to realize that I've been trying to bulldoze my way through life. And it obviously isn't working. I haven't been giving myself the respect I deserve. I haven't been following through on some of the boundaries.
I recognize that something isn't working with how I'm trying to live. So I owe it to myself, to try and live without risking my health, and my peace of mind.
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