Regaining My Sense of Self

When you Google MS, you get: “A disease in which the immune system eats away at the protective covering of nerves” — Not exactly something that brings up a ton of positive thoughts. I’ve spent a lot of time reading about the disease, but none of this reading was helping me cope with this new thing that was part of me. The entire hospital ordeal also caused me to lose a lot of my confidence.

I went 9 days without a real shower or the chance to wash my hair. I have so much respect for my nurses for everything, but the sponge baths atleast helped me stay a little sane.

When the doctors made their morning rounds, I had a hard time trying to do their little tests, like touching one of their fingers then my nose and repeat when they moved their hand. My arms were unsteady. I couldn’t even lift my right one because of the IV and the weakness one of the lesions caused on that side.

I couldn’t brush my teeth. Rob and my Mom did it for me.

If my mouth was open, trying to talk or even eat, I started drooling. I needed an adult bib. My left side was still very numb. My tongue felt heavy. I could eat (with help), but it was a very slow process.

My speech was slurred.

I could barely write my name. Though writing my signature was no problem. There was a lot of paperwork.

My eyes were slow to respond. It was difficult focusing on anything and looking people in the eye initially. I also couldn’t stand bright lights. It was easier for me to look down.

I broke out with pimples all over my face (thanks steroids). For well over a month, I couldn’t even really look at myself in the mirror. I hated my appearance. I hated how I felt. I took a selfie 4 days into my hospital stay and it’s so terrible but it’s the only real visual representation I have of that self-hatred.

I learned so much about what I was and was not capable of. But all these moments and more are what really started chipping away at me feeling ‘good’ about myself. I couldn’t really move half my body. I couldn’t really take care of myself. You know what I did before Rob drove me to the hospital? I took off my eye makeup, because I started crying and it was running down my face. That was the last time for weeks that I was able to fully do something for myself, by myself . You know what happened a couple hours while in the ER? I got sick all over myself and had to be helped into a hospital gown. Gowns became my attire till I moved to the rehabilitation unit. As I said in my first post, there is nothing attractive about a hospital gown. Point is, I have never felt so vulnerable. Some words what were on my mind: Damaged. Disgusting. Demoralized. Helpless. Things I had never thought about myself were now all I could think about.

It took a full week after being in the hospital to wake up feeling like myself. Those who know me know I don’t drink the following: coffee, tea, milk, or water (I’m hydrated, don’t @ me). If I needed an energy boost, I’d have a red bull maybe once a month . I normally woke up at 110%. My naturally energy was pretty high. When I woke up after a week, I felt like me. I was ready to accomplish everything. I wasn’t ready to jump out of bed, I still couldn’t walk at this point, but after a week or going in and out of sleep and not being able to really think, I finally felt relatively normal. My head wasn’t so clouded. I felt a bit hopeful.

A week after that, I listened to my Daily Mix 1 on Spotify as I ate breakfast. It was the first time in two weeks that I had even listened to any music. I later read how music therapy can have positive effects. I started listening to playlists every morning. I even started jamming out and singing along while sitting in bed. I started enjoying something that I used to love/do all the time. I almost forgot that I’d been surrounded by ugly off-white walls for a while.

The beginning was the hardest. Over time, even while in the hospital, as I slowly started to regain the ability to function without complete support, I realized I no longer felt so vulnerable. Sure, the first time I was able to brush my teeth, my shirt was covered in toothpaste, but I did it. The first time I ate breakfast by myself, I felt like a rockstar. Feeling proud about the little things I was doing were so much better than thinking about all the things I couldn’t do. Or even worse, thinking about things I had accomplished years ago in my life (like getting my master’s degree) and coming up with a reason why they were a waste of time because of this disease.

1/526 images I have of my brain

So, this is your brain on MS — or well, my brain. Those brighter white spots are just some of the lesions I have. You can’t see them by looking at me. But I just have to accept that they’re a part of me now.

Right now, I’ve regained feeling in my face and in all my fingers. However, I sometimes can’t fully feel my toes. I no longer have bruising on my stomach from the daily blood thinner shots I got back when I was in the hospital, that was actually the only mildly painful experience I had at that point. Now, I’m experiencing a brand new painful sensation known as pruritus, which is basically this intense wave of an extremely unpleasant itch I feel on my back. It gets worse at night and is making it very hard for me to get a good nights sleep. Today, I’m walking so much better and more than I could before, though on some days my balance is off and I feel like I’m going to trip over my own feet. On those days I keep a collapsible cane in my purse, just in case. These are just some of the issues I now deal with.

After all the tears and doubt, I'm determined to be ok. I’ve spent my entire life adapting to change from all my moves, so while this is something extremely different, I’ve got this. I’m starting to regain my personal strength and confidence from old sources. And even from some new ones. I have an incredible amount of support, that’s helped me make it this far. I’ve reevaluated my entire life in the 77 days it’s been since my first attack. I have a new perspective on how I plan on living it moving forward. For starters, rather than spend my time overthinking and stressing myself out to the max, I deal with things day-by-day and try my best to not beat myself up over something out of my control that I can’t change.

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