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mslifeisbestlife

Spinal Tapped – Life as a 20something with MS


Self-analysis is so weird. I was looking through my posts here, and I noticed that the ones I have saved as drafts are the ones where I’m being more serious. I think I kind of have a fear of being honest/serious/emotional/a real person online that I don’t have (as much) in real life. I guess because in real life you can’t edit yourself all the time, and if you did you’d be so stressed (more stressed than I am already) so it’s not really worth it. For me at least.

My mom recently mentioned that she thinks the word I use most in my texts to her is “stress.” I don’t really like that. I went through high school with all this drive and this “exuberance is beauty” mentality and I think now my mentality is more “stressed.” How are you? I’m stressed. Can’t talk right now, stressing about X.

Since this will be the first post of the new year (as long as the world doesn’t end), I thought I’d make it very honest.

And I’ve also noticed that something I don’t talk a lot about is disease. Ironic, right? That’s the whole point of this blog. I never blogged before because I thought it was kind of conceited of me to think that people might want to read about just my life. And when I got diagnosed I thought hey, now I have something that’s actually worth sharing. Maybe I can help someone else who’s going through the same thing. Maybe I can meet someone (still hasn’t happened yet) who’s going through the same thing.

But then the blog became a lot about my life and not a lot about being sick. I guess because I don’t really think of myself as sick? It’s hard to think of myself as being a sick person. A person with a disease. And yet when I’m planning a trip (like to see friends in New York and Boston this month), I have to consider when can I go? It’s easiest if I go on leg injection days because I can do those myself. And I have to bring my injection kit and my sharps container and all my medications (even the just-in-case ones). And I have to ask people if they’re squeamish and I have to find a place to do the injection where I won’t bother anyone.

And I can’t really ever be carefree. I think it’s already really indulgent and weird of every generation to see their college years as years where nothing is real (“you’re not an alcoholic until graduation” is a common saying) and you can do whatever you want, but that didn’t stop me from wanting that for myself.

Sometimes I just don’t want to sleep. Sometimes I just want to stay up late for no reason and watch the hours go by and read books or write or talk to whoever happens to be awake or wander around my house or stare at the ceiling and wish I had imaginary friends. And suddenly I have to be very conscious of that tendency in myself, and tell myself to go to sleep. Because losing sleep puts me more at risk for symptoms. But I don’t really see it as losing sleep, I see it as gaining hours just for me. Maybe by being sick, then, I’ve lost a little of myself?

The last time I wrote something I really liked, I ended it by saying that it was a story without a conclusion or a moral. It was just a story of real life, and not all real life stories have punch lines or final thoughts. Usually they’re just continuing on.

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