When you’re sick for a long period of time, you become very in tune with your body. I’ve learned how to listen to its cues and I can often tell what kind of day I’m going to have or when certain symptoms are escalating and I can then plan my day accordingly. However, I’ve also learned that sometimes it’s okay to hear my body out and then choose not to listen to it.
Right now I’m at a point in my illness where I don’t get many great days. I have days that are less symptomatic, sure. But every day I’m experiencing pain, severe nausea, migraines, and fatigue. I spend most of my time in bed, sleeping all night and much of the day. I am often pretty uncomfortable when I am up and moving around.
That said, when I get the opportunity to do something fun, sometimes I have to tell my body that I don’t care what it thinks, I’m just going to do it. For instance, my dad got 2 free tickets to the UVA basketball game this weekend and my little sister, who is a huge fan, couldn’t go. Obviously, I love UVA basketball, but events like that aren’t easy for me to attend. This is something that my dad and I used to love to do together and I haven’t been to a game since I was in school there two years ago, so I decided to fight my body and take advantage of the opportunity.
I’ve been in a flare up all week because it was an antibiotic treatment week and those always take a lot out of me. Because I’m low energy and high needs, preparation for me to go on an outing like this takes a lot more time and planning than it does for most people. I showered the night before because I always have to nap after showers—they exhaust me and always leave me with a migraine. When I woke up on Saturday morning (for the first time) I did a bag of IV fluids and did my morning meds a few hours earlier than normal because they make me sick to my stomach. I took three different nausea meds by 8:00am and made the final decision that I was going to go with Dad to the game. I stayed in bed finishing my tube feeds and trying to rest and control my pain/nausea until about 11am—the game was at 2pm.
As I said, for me, this game is a huge outing. So, I had to take enough nausea medication to last me at least 6 hours, pain medication, migraine meds, and all of the other supplies that go along with my tube and port. I also take sunglasses and a mask for the car because of my light sensitivity, a heating pad, lidocaine patches on my back and my stomach, and lots of germ-x! I’m nearly 21 years old, but packing me up for a day trip is comparable to packing up a baby’s diaper bag, just swap diapers and toys for medical paraphernalia.
I love getting out and doing things that I loved doing before I got sick, but as you can see, it is quite a process now. Going to this game will likely land me in bed for days recovering from using so much energy and being so over stimulated, but being there reminded me how much love I have for UVA and getting out and having quality time with my dad that wasn’t a road trip to a doctors appointment was such a gift. I’m blessed to have a family that works hard to help me be able to have fun outings like this every now and then.
Some days, chronic illnesses just don’t get to win.