I cannot believe its been a week since last Sunday when I was discharged from the hospital. It was not until last Thursday that I started to feel normal again. The medications I’m currently taking are working and hopefully will continue to work *fingers crossed*. The one thing I’ve learned about being in the hospital is that after you’re discharged everyone wants to talk about it. It’s totally understandable and I am grateful that so many care, I’m not complaining but, it can be exhausting. I find it a lot easier to write about it. Or it’s easier to talk to others that live with an illness because its normal to talk about multiple prescriptions, side effects, and cost without receiving that look of shock, sympathy or sadness. This past week I googled the differences between IBD and IBS since I knew it would be the most popular question, and luckily there are many articles to prepare you for “that conversation”.
During these conversations the most popular response was “Well you look really good!”, you don’t look sick, which I say thank you and don’t feel the need to tell people that I’ve barely eaten anything in the past few days. Then hearing my grandmother say, “i hope you don’t die from this” and I responded, “No I should be fine, it’s not fatal thankfully” lol Or “This disease has really taken over your life”, which I totally agree. It’s been 5 months since my diagnosis and I’ll admit I don’t recognize myself anymore. I’ve always been a quiet person, but lately I feel like I’m not “present”, can’t remember anything, brain fog, extreme fatigue . . . I feel like I have aged. Someone told me this weekend, “You’re too young to have the body of an old person”. My only response was, “it is what it is!”, I do not have control.
When I was first diagnosed I’ll never forget when someone said how a family member’s dog has colitis, is it similar? I did know a little about Canine IBD, but didn’t really appreciate being compared to a dog lol. Ugh . . . maybe I’m just too sensitive ;). I also learned early on to not start “the conversation” with “I have a disease! . . ” I’ll never forget how their eyes got wide and they slightly moved away like i was contagious, not joking . . . I had to bite my cheeks to stop myself from laughing, but I guess I might have reacted the same way, can’t be mad. In both cases their intentions were good and they genuinely care, it’s just funny. I had “the conversation” with my roommate last night, she was more distraught than I was. I ended the conversation very awkwardly by saying, “I’m gonna go to bed now” lol . . .I refuse to cry anymore over this disease.
Since my current medications are working, I plan to use public transportation for the first time in weeks to visit an old friend in DC. I’m nervous, but i know I will be fine. Can’t allow my anxiety to make me fearful of everything. And prior to my meetup, I will review my notes on “the conversation” about my IBD which is now like a memorized script.
I remain hopeful, taking one day at a time 🙂