My Experience as a Teenager
I don’t have much of a story, because I’m a teenager and I was just recently diagnosed with MS a few months ago. I don’t know too much about it and came here in hopes to make at least a little sense of the situation.
I'm lucky, I guess
I’m lucky to be diagnosed at such a revolutionary time in the medical industry, (that's what the doctors keep saying, and they know more than I do, so, sure, I guess) and I’m lucky to have such a caring mom, with a relatively good insurance plan. I was treated almost immediately and I would like to say, effectively.
My mom says in 10 years time they’ll probably have a cure. I’m not so sure about that, but if it makes her feel better, then so be it. I like to think of myself as a positive person, but I know better than to get my hopes up. My moms under a lot of stress, though. I sincerely hope that the thought soothes her.
My body shouldn't have to turn on me to make my family care
You can tell it isn’t that bad for me yet because the hardest part for me so far is the attention. I’ve never enjoyed any attention ever, and I had to beg my mom to not ask for prayers and such on Facebook. I’m almost bitter now, all these family members suddenly acknowledging me because of this disease. I appreciate them, anyway. I’m sure I’m just being a brat.
But it’s valid, right? They’ve mistreated my mom her whole life, and ignored me for more than half of mine. I’m allowed to be angry, right? My body shouldn’t have to turn on me to get anyone to care, especially my own family.
Anyway, enough about my silly family issues. I think this is a lot harder on everyone around me than it is me, and I don’t know how to deal with it. I don’t know how to reassure them. I think I’m going to be okay no matter what happens, and when I say that, I wished they would believe me. Truthfully, I know just as much as they do, but I wish they would give me a little more credit.
So thankful for friends who make me laugh
My two best friends and I joke a lot, about my MS, and I’m glad. They laugh about how I limped through the mall with them a day or two before I went to the hospital, insisting that my legs and right side were just napping, albeit for about a week straight. They understand that they won’t be able to understand the physical or mental aspect of it, and I am so thankful to have them as friends. I don’t understand it, my MS or what I did to deserve them.
The night I went to the hospital, I started realizing how bad it was when I got up to get my phone, and I could barely walk. Then when I sat back down, I slid onto the floor and it took forever, a couch, a coffee table, and my quickly deteriorating strength to get back up. That's when the fear kicked in. My mom wasn’t home, my phone can’t text or call, and the only other person in the house was my grandmother with Alzheimer's
Begging her to help me
But I really had to go pee, so I got up and cried as I all but walked to the bathroom. I forced myself out of the bathroom after doing my business, urging myself to not sit on the bathroom floor and wallow. As I “stood” in the doorway, I realized there was no way I was going to make it down the hall. My grandma was sitting in the living room, I was right in her line of vision, leaning against the wall with my left arm, my only usable limb at this point, and I sobbed as I half-stood there, begging her to help me.
I have a quiet voice and she’s deaf in one ear, so that process probably could’ve gone smoother.
But, eventually, barely able to walk herself, she came down the hall and helped me the way into the living room. She sat with me on the couch, and I couldn’t explain to her what was happening, because I was crying so much. We waited for my mom to get home. In the best way possible, I think I’m thankful that my grandma doesn’t remember it at all.
My body has aged multiple years in just a few months
Then after a little over a week of being pumped with steroids in the hospital, I went home. Not home home, my mom and I just had recently moved into my grandma’s house to care for her, because her mental state has been quickly deteriorating. I don’t know how this is relevant, but my mom was and is going through a divorce too, and I can’t find the motivation to continue online school. I will, eventually, but I failed last semester, and this semester isn’t looking good either.
My body has aged multiple years over these past few months, it feels. I’m still in the healing stages, I guess we all are, but I wonder how much better I can get. My constant question, is will I feel normal? I know I won’t be 100% again, but will it always be this obvious to myself that it’s nowhere near the same?
The anxiety is almost unbearable
Also, a regular thought of mine: I’m right-handed. My entire right side has been affected. I hope to be ambidextrous!
When someone says their leg or hands feel numb, or if their arm has fallen asleep, my stomach drops. I almost feel sick. I feel scared for them, worried, but I know they’ll feel fine in a few minutes or so. It’s still the initial, “What if?”
I think it’s too much to ask people to stop saying that, but the anxiety the few words give me now is almost unbearable. I’ll tough through it, though.
My sense of worth
I used to not rely on anything. No painkillers when I would have cramps, no Benadryl for my many sleepless nights. And I surely didn’t rely on others, I’ve always been the one to be relied on. That’s how I preferred it. Making people feel better makes me feel better, it gives me a sense of worth.
Now it’s all pills, pills, “Do you need anything?”, “Here, let me get that for you,” and more pills. I know I’m not weak, I know everyone has their low points, if they were forced into it or not, (thanks a lot, immune system,) but I can’t help but feel like I am.
My newfound dependence is frustrating
I try not to focus on my newfound dependence, and how much it frustrates me. I’m grateful. Extremely appreciative of everyone here to help me, and I’m privileged for it. I know it’s a great thing and I can’t thank them enough— literally, everyone told me to stop saying thank you.
People keep praising me for being positive, for smiling through it all, for being so “it is what it is.” But what else can I do except smile and shrug? I’ve lucked out. Sure, MS sucks major, and from what I’ve read it only gets worse, but, yeah, ok. I can’t find it in myself to express my negative emotions about MS in people’s faces.
MS told my body to wake up
After my first attack, actually, I think I’ve been mentally better. 2018 was the worst year of my life. I fell into a horrible depressive episode, and dropped out of school in the middle of freshman year, and cut off all my friends. I was completely numb and I didn’t know how bad it was until now.
Maybe it’s a bit cheesy but I like to think this MS thing was my body telling me to wake up, in probably one of the worst ways possible. And no, I’m not gonna act like everything is sunshine and lollipops. I still struggle with motivation tremendously, I still have little to no passion, etc. etc. A bunch of negatives I’d rather not focus on.
Seeing the beauty in things again
But now, I’m mending friendships and relationships, and putting myself back out there, and working myself back up to trying my best in school. I ordered my own birth certificate to get my permit, and I’m starting to see the beauty in things again.
While in the hospital, I spent most my time oggling cute girls, boys and beautiful art and nature on my phone, appreciating the aesthetic of life. The change was almost immediate, though I did definitely sink back down after about a week. I think it was probably the high dose of steroids.
Oh, also, after my second MRI and they saw that the lesions in my brain have gotten “impressively” larger, they had me take 24 tabs of oral steroids a day. Needless to say I hallucinated on the first dose. I went from about 2 pills a day to 24. They recommended me to break it up even more than I already have and shrink the dose.
My adventures with IVs
And of course, we had the brain tumor scare. And my veins are really small, so getting IVs in is never fun. I get stabbed four times on average. The bruises afterward are just distasteful.
Overall, my body is a lot more sensitive. I used to be able to endure about most anything. Now, not so much. But I only almost fainted once on one of my adventures with the IVs, when a particularly amateur nurse kept pricking me, I barely reacted at all during my spinal tap, and I do really well in MRIs. I like to be proud of that because there’s really not much else.
It’s 5 AM and they recommend I get good sleep always, so I guess I should go. I’m just gonna post this, good luck.
Does your employer provide workplace accommodations due to your MS?