People who have gone through chemotherapy regimens are cautioned to avoid excessive sun exposure for a time because of an increased risk of melanoma. Being pretty well passed the danger zone, I hosed myself down with heavy duty sunscreen and got in the pool with the kids last week. Well, I hosed down the front of my body. I guess I thought my back, shoulders, and the backs of my legs were covered simply by being in the vicinity of application.
Twenty minutes was about all it took to leave me lobster red.
In the painful days that followed, I couldn’t help but think that this was about as close to MS feeling as I had been in some time. I thought I would write about it to help some of you who might wonder about your friends who look great, but feel miserable. Sunburn doesn’t mean you get to sit in a wheelchair and have meals brought to you. Sunburn doesn’t excuse you from laundry, answering the phone, paying bills, or being nice to children and strangers. All the same, sunburn makes every minute one in which you must determine to stay in the moment and avoid simply screaming, “I have a sunburn! Please stop touching me! Stop asking me dumb questions that you could answer yourself! Let me check out of life until I feel better!”
I had two days where I was in a reasonable amount of pain. During those two days I had to be careful how I sat, I changed my gait slightly to accommodate, I planned meals that meant little to no time in the hot kitchen, I scurried from ACed venue to ACed venue to avoid the heat from the sun on my already inflamed skin. I was in a constant state of irritation. At the end of the second day, it occurred to me that I was experiencing something that most people could relate to and that might help explain the invisible symptoms of MS to the layperson.
MS is a bit like a second degree sunburn that never goes away. It makes you tired, cranky, short of attention, and very short on patience for nonsense. Seeing an MS sufferer in a social setting and with a good attitude means that you are witnessing the constant turning away from one’s desire to lash out and/or hide in a cave. If you know an MS patient who shows up with full make-up and a smile, you are witnessing something way more than you know. If you see the occasional crack, please give mercy.
I still have some lingering symptoms, but I feel so much better than I did that I’m as good as cured in my book. This silly sunburn gave me a bit of a pause to stop and reflect on just how far I have come, what I endured, and what hundreds of thousands of people who live among us quietly endure daily.
If you’ve ever had a sunburn, you still don’t know what it is like to have MS, but I think that in some way you can appreciate the constant, nagging undercurrent of torture that MS is for so many.
(Just wanted to add that I still cleaned out a super gross chicken coop, swept and mopped my floors, and did countless loads of laundry with my sunburn. I said that it is kinda like MS, but it’s still nowhere close.)