[Image shows 3 spoons laying on a laptop keyboard. Overlaid is a clipart of torn white notebook paper with a red paper clip. On the paper reads in black text “Why I Am Not Going to Let My Pain Stop Me Anymore”. Then a clipart of the standard pain scale used my medical practitioners. At the bottom of the banner in red text is the URL for theecrohniegrace blog]
At the beginning of college I got the opportunity to join their soccer team. It would be the first major thing I had done since my ostomy surgery.It was mostly just a recreational team that they were putting together, the majority were men in their 20s or 30s, I was the only girl who showed up. Already discouraged by that the first day, on top of that, practice was terrible. After a couple practice runs, my body was searing in pain, and it also started raining, and not just like a sprinkle, but like “Flash Flood Warning” down pour.
When I got home I was so sore, and so uncomfortable with the idea of being the only female on the team, as well as the coach informed me he was unsure I would be allowed to play with my ostomy since it would put me at risk that he wanted a doctor’s note saying I was okay to play. Jumping through all those hoops while in pain seemed like too much. So I didn’t go back. The coach texted me and invited me to come down to Applebee’s with everyone even to watch soccer games and hang out, but food was a no go for me and still I felt awkward and out of place.
Soon I started missing out on other things, events at school, opportunities to hang out with friends, or when I would hang out I would bail early or sit out if they were doing something that required a ton of walking because I would get in pain and become dizzy.
The first time it occurred to me that I didn’t have to choose between having fun and being in pain was when I was out with my friends and her baby. After walking around the mall for a few hours, my heart rate was 130, my knees and hips were throbbing in beat with my heart beat, and I was so exhausted cause I had opted to not start my feeds til halfway through the day because sometimes I’m just a bad patient and a stubborn teenager who to quote Marlin from Finding Nemo, “You think you can do these things Nemo and you just can’t!”
So as we pulled in to Toys R Us, I got up the courage to say, “You guys go ahead I will wait here. I’m not feeling too good.” And I honestly thought they would leave it at that, but what she said was even better.
“There’s no reason for you to miss out, come on, we’ll get you a wheelchair.”
And just like that I was able to continue to hang out with my friends, I started using a cane more after that to take pressure off of my left hip when I walked so it wouldn’t pop out of place as much. I started realizing I can still do things, even if it means taking a cane or using a wheelchair, and that it was far better than sitting at home in pain all the time.
This summer I have done so much already. And yes, it is exhausting and today is my physical rest day where I am gonna sit, write, and rest. Maybe finish How I Met Your Mother for the umpteenth time. Maybe play a board game with my brother or boyfriend. Maybe paint or crochet, or sit on the porch and work on my mini porch garden (chronic illness friendly garden). Even on rest days, the possibilities of what I can do are endless. Yes, I am in pain, but I have so much I want to do, and I am not gonna let that stop me.
Disclaimer: It’s also okay if your pain does stop you. They do not call chronic pain disabling for no reason. It makes you not abled, dis abled. And that is okay. You do what you want and need to feel the best you can. Pushing yourself is not always a good idea, so do not always think well “She’s pushing herself so I need to as well.” Do what is best for your body.
[Image shows me sitting on the couch. I have short red hair that bangs sweep across my face, black and green glasses, my eyeliner is done, my NJ tube, and some lipstick on. I’m wearing a wire wrapped crystal necklace and a bright blue shirt with the Cincinnati Children’s hospital name and logo.]
Have a great day!