I turn 26 two weeks ago, and it was not a day I was looking forward to at all. Yeah, I know it should be a super happy day, after all I am not just luck to be alive it’s a miracle that I am alive still, after all I went threw these past few years. I don’t talk about it much actually I do a lot to hide it and I have gotten very good at it, so good that unless I tell someone I have MS or that I am currently having a hard time using my feet or my hands, they won’t be able to tell. And it’s not just people I meet that can’t tell, even my co-workers, girlfriend, and family can’t tell. Which is a bit off topic to what I’m actually writing about.
So, I was diagnosed with MS when I was 19 so I’ve had it just about six and a half years now, which has seemed much longer looking back. Living with MS sucks not much of anything sucks more and its made worst by the fact that 99 present of people have no clue what it is or what it’s like to live with it. Which is the main reason I hide it all the time cause it’s just easier not to deal with the dumb people. Yep, I’m saying dumb people because of what most people say to me when they find out. Here’s the best and most common of the dumb things people say. “You should be happy, because it could be worst you could have Cancer.” I’ve heard this so much I actually can’t be nice about the fact that this is actually a completely dumb thing to say and have actually responded with I wish I had cancer because that would be much better. Which makes a lot of people angry. I usually get the well my family member or friend has Cancer and it’s not easy you’re a jerk. But my reply is always so how many people do you know with MS, which has always shut them up though I can still see that they are mad about what I said. Oh, I did get one person that felt that I needed to be though a lesson in being nice. He replied well I meet someone with MS and I know it’s not as hard as cancer because my mom had Cancer. She had to go the doctor all the time and she fought it for years before she got any better.
I did understand that he went through a lot with his mom and I wasn’t trying to be mean but he made me a bit annoyed. The fact is there’s so few people with MS that it’s largely unknown and the people that know about it know so little that it makes it seem like a cold in comparison to any other serious illness.
So, I’ll tell some of what it’s like to live with MS mostly on how I found out I had it, I’ll tell more about my daily life next time. First it started with pain mostly headaches when I was thirteen and it was mostly every day or other day. Sometimes it would hurt for more than a week without stopping. I would have to lay in bed in pain in the dark because any light would make it hurt more. Usually it would be an hour before I feel asleep and I would wake up in the morning to an alarm that felt as if it were smashing the side of my head. And I complained and went to the doctor over and over again I spent most of my first year of high school going to the doctor and missing my first class of the day and all so they could tell me I was fat. So, I started to lie and say I’m fine no matter how much it hurt because it was pointless I had every test they could think of come back negative, and doctors just started to guess about what was causing it.
So, my high school life passed with allot of pain and by the end I was actually in great shape working out almost every day. I was no longer even a bit over weight and I was still in pain. But I was taking painkillers like there was no tomorrow. The messed-up part was I didn’t even consider going to the hospital or to a doctor even though the pain would get so bad I would fall or just black out and wake up wondering what was going on. Until I had a minor stroke which funny enough felt like another one of my headaches and the only reason I found out it was a stroke was because I started having version problems, and went to get and eye exam. Three hours later and having every eye test the doctor could do she told me I had a minor stroke. News that didn’t really surprise me with the pain I was in all the time. Bright side to the whole thing was I did actually end up getting my whole exam free, because I was the first person with actually nerve damage her interns had seen so I got every test done just so they could see the results. From there I went to the neurologist who ran test then MRI’s and more test then eventually a spinal tap.
Then finally two days after my spinal I was in the hospital unable to walk or use my right hand and I was told there’s a 99-present chance I have MS but you will know for sure when the test results come back. Not really a good way to find out your sick. But it got worst after my results came back a second doctor had to look everything over because I was so young and had no history of it in my family. And the first thing she did when she saw me was apologize. I was the youngest person she had told they had MS in her 30 years, but at this point I no longer cared I at least had an answer to what was wrong with me though it wasn’t one I wanted and it took being in the hospital unable to walk or feed myself without dropping stuff everywhere, to find.
So, that’s how I found out I have MS and I thought laying in that hospital bed knowing what’s wrong with me that my life could get better now. But that was just the first night, what happened the next night is for another post.
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