After receiving my first Xolair injection about a month ago, I’ve been feeling pretty off. Actually, let’s be honest here. I’ve been feeling awful. The day of the injection, I developed a headache, followed shortly by an earache and body pain, then proceeded by a crazy amount of nausea. I’m pretty used to living with a certain level of discomfort but these symptoms have basically left me bed bound, only leaving the house once between the time of the injection and the beginning of graduation week. We ended up speaking with my immunologist and she advised me to discontinue the shot. At my next appointment, we will try and figure out a new plan of action.
Despite feeling pretty under the weather, I was determined to make it to my sister’s graduation events. It’s a once in a lifetime thing and I wanted to be there to celebrate her hard work and accomplishments. Even before the Xolair fiasco, my mom had been suggesting that we rent a wheelchair for me to use during the festivities. I really didn’t want to. Honestly, I was embarrassed to be seeing all my teachers, friends, and people from my grad class in such a state. But, with the sharp decline in my health, I had no choice but to oblige. It was either I go using a wheelchair or don’t go at all. So, we rented a light weight wheelchair from shoppers for the week.
Prom day with the wheelchair went off without a hitch! The park was definitely not the most accessible place I’ve ever been. There was a huge hill going down into the park and, had I been on my own, I couldn’t have managed to get down it without rolling down uncontrollably. It took both my parents holding onto the handles of the chair to prevent me from ploughing over everyone. Once down the hill, things were a bit easier since there was a paved pathway throughout the park. My good friend Hannah was brave enough to attempt to bring me off-roading to where they were taking some of the pictures. It was a rough ride but, needless to say, we both got lots of laughs out of it and Hannah got a good work out! On our way out of the park, things were a bit tough; mainly because of the crazy steep hill and because of the fact someone had parked in front of the ramp from the sidewalk into the parking lot. Not cool.
I really enjoyed getting to catch up with everyone from high school. We’re a very tight-knit community and people are so caring and supportive of myself and my situation. It was definitely the moral boost I needed after a tough month. However, I had to pay the price for that excursion. The next day, I woke up in excruciating pain. Thankfully, after trying several over-the-counter pain relievers, my family doctor called in a pain medication for me to help make it through the week. With that on board, I was able to make it to the graduation ceremony that Saturday. It was special to get to see my sister getting her diploma after so many years of hard week. After the ceremony, we went outside the front of the school to take some family photos and so my sister could take some photos with her friends. I decided to use the wheelchair again because all that walking would’ve been too hard on my body.
Using a wheelchair for the first time in public definitely made me reflect on two things I’ve learned over the past (almost) two years of living with chronic illness. The first is that you should never let the fear of what other people may think stop you from doing things. If you do, you’re the only one being punished, you’re the one missing out. I only have so many good days that punctuate the strings of bad ones and I need to live them to the fullest. If I need a handicap parking pass or a cane or a wheelchair to do it, so be it. Sure, I did notice a lot of people staring and got quite a few looks that can only be described as “the cancer eyes” (the look people give when they find out someone has cancer) but I also got lots of friendly smiles, great conversations, and people who treated me like me, not just some sick girl in a chair. I almost let the fear of using a wheelchair stop me from going but I’m glad I didn’t.
The other thing I’ve learned is that, when dealing with a limited energy source, it’s important to pace yourself and prioritize. Participating in grad week was something important to me. Was I able to participate in everything? No I wasn’t but I compromised. Rather than go to prom photos and the grand march, I just went to the photos because I knew it would take me longer to recover if I went to both than if I just went to one. Rather than go to the mass at the church before graduation and the graduation itself, I just went to the graduation ceremony. It can be hard not to beat myself up over this because, two years ago, I would have easily been able to do it all. In fact, I did do it all and more since it was my own high school graduation! However, I’m opting to celebrate the small victory of being able to participate in some rather than be mad I couldn’t participate in all.