It’s been two years since I started getting my medication for my ulcerative colitis by infusion. I get my infusions every six weeks, which isn’t quite often enough to completely get used to them. I still wake up early each infusion morning remembering I have an appointment and worrying I’ll sleep through my alarm and miss it. But in the two years I’ve been doing this, I have learned a few things along the way.
1. Bring things to do that you enjoy. Some infusions have lasted three hours, plus the time spent in the waiting room and waiting for the medication to arrive. Compared with that experience, the half-hour infusion usually flies by. But as with any doctor’s appointment, I never know how long I’ll have to spend waiting around, and I like having multiple options to distract me. I usually bring something fun to read or download a couple of episodes of a show I like onto my iPad, and I make sure I have music or podcasts to listen to. Sometimes I even bring a coloring book. I rarely ever use all of these options, but it makes me feel better knowing I have them.
2. Wear comfortable clothes. I work from home on days when I have an infusion, which means I don’t have to worry about what I’m wearing. I have this large sweatshirt/jacket from the Gap that is open in the front and has sleeves that only come down to the elbows. It’s perfect for infusions. Sometimes I bring a large scarf to wrap around me – anything that keeps me warm and cozy but also allows for easy access to my arms.
3. Drink lots of water beforehand. I can’t believe it took me two years to figure this one out. Before every infusion, a nurse would spend what felt like an eternity poking around at my arm trying to find a good vein. Sometimes it would take more than one person to try putting in an IV. Since I started making a conscious effort to drink more water before my appointment, I haven’t had that problem.
4. Bring snacks. One of my biggest concerns with the three hour infusion was whether I would be allowed to eat during it. I was so grateful that the answer was yes. Sometimes I’ll stop at a coffee shop before my appointment and buy a huge chocolate cream cheese muffin. Is it the best thing for me to be eating, especially with my ulcerative colitis? Probably not, but I figure I deserve a treat.
5. It’s OK to feel sorry for yourself. For longer than I care to admit, I felt sorry for myself during each infusion. I felt sorry for myself for having this disease and for needing to be on a medication that required me to come to the hospital and get infusions so often. Then I would feel guilty for feeling sorry for myself, when most of the people around me at the infusion center were getting chemotherapy. But I think it’s OK to feel whatever emotions you may be feeling during your infusion. Having any kind of chronic illness is difficult at times. I try to balance it out with gratitude – whether it’s for the medication that allows me to live my life or for this time to myself eating a muffin.
6. Take it easy the rest of the day. Sometimes I’m tired after my infusion, which I think is more due to the anticipation and having my appointment first thing in the morning than any side effect of the medication. I try to be nice to myself and take it easy the rest of the day.
I was surprised to realize during my first infusion that despite being at the hospital, it was nice to have a few hours to myself where I had nothing to do except sit there and let other people take care of me. So now I try to think of it as a kind of treat – an excuse to rewatch an old episode of a TV show I love, or read a magazine, or just lie there with my eyes closed. If anything goes wrong, I know the nurses are right there to help.
Getty Image by torwai
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I was diagnosed with ulcerative colitis in 2012, when I was 27 years old. I write about my experience living with a chronic illness on my blog, hopeinflamed.com.
emilyroessel