What the hell is MS? Part 1

Just part of my experience with Multiple Sclerosis!

*I want to put a disclaimer before anybody reads this to say, I am not a medical professional and I am simply sharing my own experience with Multiple Sclerosis. Please consult a doctor for any medical questions you have. Here is a link to the MS Society’s definition of the type of MS I have: https://www.nationalmssociety.org/understanding-ms/what-is-ms/types-of-ms/relapse-remitting-ms *

So what is it like to have MS? For me, I can go about my day feeling completely symptom-free, until all of a sudden–I got hit with this awful feeling. Is it food poisoning? No, it feels like my chest is tight and it’s hard to take in deep breaths. No matter what position I stand or sit in seems to make it worse. It’s what I imagine getting squeezed by a boa constrictor would feel like. It’s called an MS Hug. Why the fuck did they name it to sound kind of cute/sweet? I don’t know. To anyone reading this that has menstruated before, it’s like when you have really bad cramps and try to get into a position that hurts the least amount possible. But seriously, nothing feels good. It’s just suffering until it decides to be over.

The only other time I’ve had one of these was last July–it felt similar but lasted much longer than this one is seeming to last (it’s only been about an hour so far). Something like this is not classified as a true MS relapse if it does not last for longer than 24 hours. The reason I was diagnosed in the first place was because I experienced my first true MS relapse last April. It was a bit of a slow burn–I felt like my vision was getting sort of blurry. It just so happened that I had gotten a new prescription for my glasses, so I was just assuming I was getting used to that–until I started having double vision that completely debilitated me. I was hardly able to walk outside or eat without throwing up. I am forever thankful to my old roommate’s friend Jeremy (a nurse). She got him on the phone with me and he urged me to go to the ER after I described my symptoms to him (don’t worry, I wasn’t driving). As soon as we pulled up to the hospital, I got out of the car and threw up all over the ground. I knew that I made the right decision.

I remember being surprised that I didn’t have to wait too long before getting seen. I also remember there was a teenage girl there who had a horse step on her foot (“she didn’t mean it!”) and I wished that whatever the hell I was going through had as simple of a solution as that. I explained my symptoms to the nurses and I was given a CT scan first. After the scan, a nurse asked me if anyone in my family had MS. My stomach kind of dropped a bit at that question–isn’t that what my brother’s friend got diagnosed with several years ago? Wouldn’t that diagnosis basically be a death sentence? Surely that’s not what this is. I answered truthfully and said no. The nurse informed me that they would be needing to do some MRIs on me to get a better idea if that is what I have. “MRIs? As in plural?” I thought to myself. You’d think I would be more scared of that, but I was in the fucking hospital and if the nurse thought I needed an MRI, then I would do it without question.

I don’t recall the exact order of events after that, other than having the double vision go on for 6 more days–I got my daily hour-long steroid drip (which made me feel extremely emotional “I just love you SO MUCH, MOM!” *cries), 3 square meals a day of my choosing (the hospital had decent food!), and the hourly blood check. I was poked to all hell by the end of my stay. I was officially diagnosed after getting the first MRI due to all of the lesions the neurologists found in my spinal cord and brain. I spoke with several different doctors during my stay, all of whom told me that it’s so good I’m getting diagnosed now compared to even 5-10 years ago. There are many more options for managing MS symptoms than there used to be. Apparently the Pacific Northwest is also a good location to be since a lot of people here have it. Part of MS is having a Vitamin D deficiency (I’m surprised my brother doesn’t have it too, he’s even whiter than I am! Sorry, distasteful joke), and it’s also more common in women around my age.

All jokes aside, it felt validating to finally get a diagnosis. There were definite symptoms at least 5-ish years ago. I had a couple of different incidents of experiencing numbness from the waist down (basically both of my legs, all the way down to my feet). I went to the doctor for that, and they gave me an x-ray and told me I had a mild degenerative lumbar spine. They assigned me some PT and the numbness eventually went away. Since that, I occasionally experienced my hands and fingers being numb. I thought “yeah, I should probably get that checked out”, but it didn’t really hinder my life, so… I didn’t.

Anyway, if you made it this far, thank you for reading. I just wanted to share my experience with this disease. I know that these kinds of things are not easy to comprehend if you don’t have them (and also, even if you do have them). Perhaps I’ll write a more detailed Part 2 later. In the meantime, here are some photos from around the time of my diagnosis:

This Tokyo Edition Traveler’s Notebook was released during my hospital stay. I was so excited to get my hands on it after getting out! This photo was taken at the Tokyo Edition TN Meetup at Oblation Papers & Press in Portland, OR. :)

Opal welcomed me home from the hospital by running up to me and purring and rubbing her face on me. I’m holding the first pen that I inked up after my hospital stay—the Sailor Pro Gear Slim Purple Cosmos. Finally being able to see normally and journal again helped me to feel more like myself.

Fun fact about this picture—I had JUST gotten that Spirited Away tattoo that day (about a week before going to the hospital), and it was still in the healing process when I was hospitalized! Also, it’s April and I hanging out at a cafe in Portland together.