Working with MS: When Fatigue Forces You To Make Hard Decisions

Hi. I’m Amilee and I have multiple sclerosis. 

I was diagnosed with MS in 2018, just a month before my 30th birthday. At first, not much changed. My vision, affected by optic neuritis, improved enough that I could still see without glasses. I kept working long hours — 30 to 50 a week, sometimes seven days straight — at the restaurant where I worked. Life felt normal still. 

Fast Forward to 2020

By late summer — around August or September — restaurants in North Carolina started reopening for sit-down customers. I left my former job and started working at another local restaurant. Aside from the additional cleaning and safety measures, not much changed. I was still working full weekends, Thursday through Saturday, and pulling doubles on Sundays.

The first time I really had an issue was in 2021. I had been working my usual weekends and a double shift, but this particular weekend, I started feeling sharp, stabbing pain in my lower right back. It was bearable at first, coming and going in waves, but by 2 a.m., I knew I needed help. My dad picked me up from my apartment and took me to the ER.

They ran some scans, gave me pain medication, and then a PA — or maybe the doctor, I’m not sure — told me it was “musculoskeletal pain.” And that’s when it clicked: This is because of MS.

I cut my schedule back to four days a week with no doubles, and for a while, that worked. But over the last six months, I’ve felt the lassitude settle deep into my body. I wake up, do one small thing, and then feel physically drained. Some days, I get up, have lunch, and then need a nap — that’s how exhausted I can feel.

At this point, I’m struggling with the decision to cut back on my hours at the restaurant. I genuinely love my job — I love serving, the fast pace, and the people I work with. But I can feel it. The weakness in my legs when I walk. The strain in my arms when I carry trays. I’ve been asking for help more often, and while my coworkers are supportive, they have their own tables to tend to. I can’t shake the feeling that I’m becoming more of a burden there. 

I’ve been thinking long and hard about this difficult decision — whether to cut back my hours — and how I can supplement my income in other ways. I know I’ll figure it out, but in the meantime, I’m going to focus on working my three days a week and making the most of my time there.

Originally posted on Medium here.

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