The Everyday Thoughts and Worries of Someone With Crohn's Disease
It’s between 6:00 and 7:00 a.m. when I first wake up. I fell asleep around 4:00. Everyone else in the house is still asleep. I get up and maneuver myself, my TPN (I’ll explain this later) and my pump to the bathroom. I’ll do this 10 more times by 11:00 a.m.
Most of my mornings start like this. It’s exhausting. I have Crohn’s disease. I’m 29 years old, I live in Winnipeg, MB and I know where all of the best easily accessible, clean, single, public washrooms are in this city. I was diagnosed with Crohn’s disease when I was 10; let me tell you, it’s been a long road for me, but that’s not what this is about. I won’t be talking about the road I’ve traveled but would more so like to talk about the one that I could.
To set the stage I need to explain a bit about my current lifestyle. I receive almost all of my nutrition requirements intravenously. I have a Cooks catheter (central line) placed in my upper right chest. This is what I use to receive all of the lovely lifesaving fluids I need. It takes 10 hours to run TPN and another four to infuse a liter of saline. You may be wondering at this point if I eat. Yes, I do. Eating is complicated. I spend hours of the day hooked up to a pump and IV solution either in the bathroom or sitting alone in my living room mindlessly reading stuff online while something plays on the TV in the background. So, I have a lot of time to think. There is always a huge degree of uncertainty that people with a chronic illness need to face. Because of this I believe it complicates our futures and our thoughts. I know some of the items I’m going to list are concerns for everybody. But I think for people with a chronic illness or disability they’re a little bit more profound. They add extra stress to lives that are already filled with so much of it. Here are my honest thoughts that I have because of my illness…
Should I move today?
I have things that need to get done. Cleaning, laundry, the dogs need to be let out and fed, dishes need to be done and the last load of laundry still needs to be put away. I need to drop off papers or go for a doctor appointment. There are house renovations that could be started or finished. But really, should I move today? I’m exhausted and I’ve been nauseous since 4:00 a.m. If I lay in bed all day I’ll accomplish nothing, I’ll waste an entire day and then I’ll hate myself for that. The day I wrote this I spent two full days in bed.
What if I lose my income?
Currently I’m in an OK situation. We are a two income household. I know I’m not capable of taking care of myself without my source of income. I live in Canada so there is a support system. It’s not much. I have some savings and investments but nothing I could use anytime soon. If we were to lose my income things would be tight. We would have to really cut back. At that point we would just be getting by. No saving for the future. A future that I have no idea what is going to happen in.
What happens when I’m older?
I still have the ability to drive and get around. Some days I may not feel up to it, but the next day I might. I see seniors waiting at bus stops in the cold loaded down with bags of groceries and I can’t help but think that when I’m older I won’t be able to do that. This terrifies me. It terrifies me to get old, to be alone and to be sick. I feel like on my worst days I can still force myself to get out of bed and run to the store, to do something small. I feel like when I’m a senior things will be really difficult.
What do I tell someone when they ask, “What do you do?”
This has been a tough one for me. I’m young, I’m independent, I’ve lived away from my family for 10 years. The real answer to this question is: I watch Netflix, I play video games, I nap with my dogs, I Google stuff, some days I sit in silence for hours. Hell, some days I don’t even get out of bed. I skip showers. I wear the same clothes multiple days in a row. I can go hours without human interaction! (Thus why I talk to my dogs as if they understand every word I’m saying.) The answer I actually give: I’m in advertising. Alluding to a time that I worked over two years ago. Why do I do this? Because I look as if nothing is wrong with me and I, for some reason, feel like I need to justify that I don’t work to someone whom I may not even know.
Do I stay or do I go?
This is a constant struggle. I want company and to be around people but when the moment comes to get ready and go out, all ambition leaves my body. Minutes pass. I should be getting ready, but I don’t move. It’s getting late. I start thinking of reasons why I can’t go, shouldn’t go. Anxiety levels rise. I’m definitely going to be late now, which has become all too common. Guess I’ll just cancel.
I think these really are the main thoughts that plague my mind the most. Some days the future is all I think about. We just never know where we will be or what sort of supports we will have. But just know with each and every day I become more OK with the unpredictability of having a chronic illness. We learn to bend, adapt, accept new challenges and go with the flow. So whatever my answers to these questions end up being from day to day, it will work out. I will make it work out.
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Thinkstock photo via liza5450.