You have multiple sclerosis ... Now get back to work!

When I was first diagnosed with multiple sclerosis in 2021, I thought back to all the times I had experienced what I had later understood to be relapses. There was a time at work in Vermont when I completely lost my vision for no reason. Then was the time when I couldn’t put weight on my leg and struggled to walk up and down steps. The burning, shooting pain that left my arm on fire and my fingers numb. All these instances were a precursor to the place that I am at now- struggling to manage working full-time while taking care of myself and soothing this beast- MS.

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My job uses up all of my spoons

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I am a teacher in a middle school in Florida. Specifically, I teach English Language Arts to Advanced 8^th graders. It is not an easy gig for the faint of heart! Getting to my classroom requires an elevator, long hallways, and juggling about 100 things in my hands. Then, I still must make my way to the teacher’s lounge to put lunch in the fridge, followed by a trip to the bathroom (I have a 45-minute drive to work, so that is a necessity). Then, back to my classroom to get my board ready, computer and phone set up, then usually a meeting downstairs. Then, back up the stairs or elevator to the classroom to greet the students. I am usually exhausted by the time the first 30 kids of the day arrive in my room. 

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Once all that settles, I tell the students what we need for the lesson, what our agenda is, what they need to start with while I take attendance, and THEN I go around the room to check their work- otherwise they sneak onto YouTube. Then comes the lesson, where I am in front of the class, walking around, going back and forth. Once the bell rings, it is back out the door to greet the next batch of kids. If I need to go back to the restroom, there is a three-minute window between each of the 49-minute classes. If I have an emergency and need to go at any other time, I need to call for someone to assist my class. 

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This all leads me to wonder how much longer I can do this effectively. Once I get home from school, I am spent. My spoons are gone, and I am left with just forks- pain, fatigue, spasticity. I have barely enough left to do what NEEDS to be done, nonetheless what I would like to do. I can usually make dinner (thank you Instant Pot), and my boyfriend is so good at minimizing what I need to do when I get home. I cook as much as I can because I really love it, but when I can’t, he jumps right in and takes over cooking, cleaning up, and making sure I have something to drink or eat once we are resting.

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I am on vacation right now- this whole week I am off! So far, I got to spend time with my daughter who flew in from Chicago, my mom and aunt, uncle, and cousins, my nephew and his wife as well. We went to the beach and out to eat. It was incredible. Yesterday, my boyfriend and I went to the outlet stores. Today, I went for a walk with a friend of mine and later went for a bicycle ride and to the pool for a quick dip. I feel so good, so rested, so energetic right now- why can’t I feel like this AND keep working? MS only gives me so many spoons and work steals most of them. 

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So, how do I intend on keeping myself healthy and happy while working and dealing with this disease? I have asked for an ergonomic keyboard at work so that can help me with the spasticity in my arms and hands. I have worked with my neurologist to try medications that can alleviate my symptoms and ease my fatigue. I have talked to the administrators at my school and explained my concerns about my ability to remain in the workforce without assistance. They were more than glad to support any accommodations that I need to get through the day. 

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Making adaptions

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The school has offered to move my classroom to a downstairs room so I can reach it more easily, and to offer more frequent opportunities to use the restroom as needed. I also cannot walk very far without a lot of pain and loss of balance. I was using a cane for school and spoke with my general doctor. She suggested a rollator and that has been a huge help. I find myself getting through the day with less leg pain and fatigue. The only downside is that I have to navigate my classroom awkwardly. It is a maze of desks and laptop cords everywhere, so it is a bit of a challenge! 

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I also need to make a plan for what to do at home. It isn’t enough to get by at work for me. I want to be me. I want to do the things I want to do. I don’t want to be chained to MS. I am going to incorporate a schedule that I can do all the things that I love – Zumba, bike-riding, going out, swimming, walking and everything else (within reason- don’t expect me to be running a marathon)! Knowing that progression happens and fatigue can knock me out for a few days renews my determination to have some of my spoons for me when I feel okay-not just for work. 

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