Since my diagnosis in 2012, I have tried to look past the negative aspects of multiple sclerosis and maintain a positive outlook. However, I realize that staying positive is not easy. I’ve even received a comment on a previous column about how the narrative of “focusing on the positive” can be harmful. I’ve also encountered similar perspectives in MS groups on social media.
I agree that having MS sucks and that we should also deal with our negative emotions. I’ve found that some aspects of this disease are worse than others. The following are my biggest challenges:
When I was going through the diagnostic process, I had many MRI scans. I wanted to cry and scream every time I had to lie in that tube of death. Having a cage secured around your head is crazy enough, but to have to lie perfectly still and endure an hour of loud banging is ridiculous. You mustn’t move or twitch, or the technician might have to repeat that section of the test. I want to meet the inventor of this machine and ask why they had to replicate the experience of being buried alive. I have had 29 MRIs so far, and the procedure hasn’t gotten any easier for me; my loathing for the machine merely grows over time.
As many know, fatigue is a common symptom of MS — and my worst enemy. Fatigue made college incredibly challenging, and getting to sleep at a decent hour and attending classes while fighting to keep my eyes open was a daily struggle.
It’s embarrassing when you work all day, and afterward, your fatigue is so severe that you have to take a nap in your car before driving home. Making plans after work wasn’t an option because I could barely make it to the car. I worked at a theme park, and my co-workers would stay after work to go on the rides. But I couldn’t. And energy drinks and caffeine pills were useless.
Before my infusions, I had to complete several cognitive tests. I’m horrible at math. One test consisted of listening to a recording of a voice repeating numbers. I was tasked with adding the numbers and then a third number to my answer. I could never get it. I would hear the first two numbers, and then I’d be lost. I didn’t understand the point of that test and felt as if it was just entertainment for my nurse.
Staying positive can be a challenge for some. I find that it helps me to keep an upbeat attitude, but others may disagree. Multiple sclerosis is painful, and I have cried on many occasions. Sometimes I feel angry and ask, “Why me?” But at the end of the day, I have to suck it up and deal with it.
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