Last Thursday started off perfectly normal. I woke up. Did my morning routine, shared my latest blog post to Facebook, and ate breakfast while watching Netflix. I worked a bit. Analyzed what I still needed to clean for my dad’s visit. Ate lunch. Worked some more.
And then the bloating started.
When you have a chronic illness, you learn your body very well. So while the initial bloating was mild, I knew that discomfort was only the beginning.
Discomfort gave way to pain until I threw up. For the first time.
When I’m lucky, throwing up just once will decrease or eliminate my pain, and I can continue with life as normal.
This was not a lucky time.
I spent the rest of the evening alternating from tolerable pain to severe pain. I could barely move. I certainly couldn’t concentrate to write a blog post for Friday. I threw up two more times.
My sweet husband finished all the cleaning for my dad’s visit.
I ended up going to bed around 9pm after taking both an anti-nausea pill and an anti-anxiety pill.
Friday morning I woke up feeling groggy, but otherwise fine. Too play it safe, I didn’t eat much during the day.
Alas, the bloating returned like clockwork at almost the exact same time Friday as it had started on Thursday.
But I powered through it for my dad and my husband.
This was a calculated risk. I hoped I wouldn’t need to throw up in the car. I hoped that the pain would wait until later in the evening. But I knew that I could deal with my symptoms if necessary.
Dan, my dad, and I went to a Miata event Friday night so Dan could sign the millionth Miata. While Dan took a million photos and got free car swag, I got up close and personal with the dealership toilet. The pain returned.
At least I didn’t throw up in the car.
Instead of taking my dad out to dinner, Dan cooked for the two of them while I balanced my dehydration with my severe pain. Ice cubes helped. I still threw up a second time.
I again went to bed early, heavily drugged.
Saturday morning I woke up feeling groggy, but otherwise fine. Dan made me tea. I stayed upstairs while Dan and my dad ate real (and smelly) food downstairs to avoid feeling nauseated again. I eventually made my way downstairs and tentatively ate some cereal and toast.
Saturday night we had tickets to the Braves game. This was a big deal.
If you don’t live in Georgia, or if you don’t follow the Braves, you might not realize they’re building a new stadium. This is the last season in the current stadium.
I have literally been planning this weekend since last winter when I asked my dad if he would rather attend an early game in April or a late game in September. We are surprisingly heat-adverse considering we grew up in the South. Dad said he wanted to wait until September when maybe a night game wouldn’t be too hot.
My dad is the reason I like baseball. He never won me over to football or basketball or tennis or golf, but I watched Braves games with him as a kid. I asked him a million questions during the commercials. He always patiently answered them. I never became the kind of person who memorizes stats or idolizes a single athlete, but I developed an appreciation for baseball in general and the Braves specifically.
I did not want to miss the game.
Saturday I rested as much as possible. We watched a bit of TV in the morning. I then took a three-hour nap. It wasn’t our original plan of showing my dad around downtown, but he has 20 years of practice in being flexible due to my health.
I felt a lot better after my nap. Luckily we still made the Braves game, AND I didn’t get sick!
But if I had been sick again, we would have left early. Yeah, it would have sucked, but it would have been necessary for my comfort. I am so grateful that I can at least depend on my dad and my husband to understand me ruining our plans. Not everyone has been so kind to me about my health upsetting our plans.
On Taking Calculated Risks
This is life with Crohn’s Disease. I have to weigh the consequences of practically everything I do. What will I do if I get sick? How many people will I affect? What is my back-up plan? How much pain can I tolerate? What bathrooms will be nearby? What steps can I take in advance to minimize the chance of getting sick? How long will I need to rest to recover?
Even when I am generally healthy, I do not have as much energy as other people my age.
In high school, my friends struggled to understand why I didn’t socialize on school nights. We often spent the same amount of time on homework and extracurricular activities, but I needed more sleep at night. I couldn’t just go to bed an hour or two later than usual and be fine the next day. I was already pushing my physical limits by getting 6-7 hours of sleep each night, when I really needed 8-9.
I recently read “I Won’t Apologize for Having Fun While Chronically Ill,” which put so much into perspective for me.
Whenever ill people do — well, anything — it’s taken as “proof” that we’re bluffing about our condition. Many of us are confronted by complete strangers on a regular basis when we go out in public, on everything from using parking placards to requesting ADA accommodation at events. We’re challenged more by people we know, who should really know better.
I didn’t realize how much I had internalized all the comments and looks and insinuations over the years until I read this article.
On Living a Normal Life
For the most part, I absolutely live a normal life. In the past 20+ years with Crohn’s Disease, I got through school on a “normal” timeline (and excelled academically, thankyouvermuch). I traveled extensively, even living in France for the better part of two years. Dan and I met, fell in love, and got married.
But I haven’t gone more than 3 days without having diarrhea since I was maybe 6.
In middle school and in high school, I often excused myself to the restroom to throw up. Then I returned to class as though nothing had happened.
While working two jobs in Columbus, I only called in sick to my second job if I was in severe pain or throwing up more often than once per hour. I otherwise went into work with mild pain, nausea, and/or diarrhea. I only called in sick to my main job (which I could do from home most days) if I was so sick that needed to sleep all day. Severe pain and vomiting didn’t stop me from plugging away at my laptop at home.
On Not Whining
Having Crohn’s Disease means learning to manage expectations, be flexible, and tough it out.
But I guess since I don’t whine 24/7 about having Crohn’s Disease, I’m faking? I’m exaggerating?
I am waaaaaay more graphically honest about my Crohn’s symptoms than the average person with an IBD. So many patients with Crohn’s or Colitis feel shame or embarrassment about our disease and our symptoms. But I still don’t go around mentioning every time I don’t feel exactly like an able-bodied 29-year-old. Because that would be a 24/7 job.
So when you ask me to do something, and I say I can’t because I’m not feeling well, the fact that I never previously mentioned not feeling well doesn’t suddenly mean I’m lying about it. It just means I am not physically able to do whatever you want me to do.
On Not Apologizing for My Calculated Risks
The article I linked above points out that people with chronic illnesses can’t win, no matter what we do.
If you are too exhausted or hurting too much to shower, do your hair or dress up you’ve let yourself go; if you go out with makeup and styled hair, well, you’re obviously not sick because you don’t look sick.
If you post photos on social media where you’re looking well people will think you’re not ill; if you post photos of yourself undergoing treatment, you’ll be accused of being an attention seeker.
So I just won’t play the game. I am as honest as possible about my life with Crohn’s. Make of that what you will.
I will continue to try to live a balanced life. Not everyone will ever agree with what I prioritize, but my calculated risks are mine to make.
Life could be worse. I could be a woman running for president…