Last updated: September 2023
Sometimes, I explain managing my MS like working a second job. Only, I do it at the same time as my everyday job. I often plan, replan, and restructure my schedule to make room for my MS needs. I find that dealing with my symptoms takes much longer than I would have liked. And for this job, I feel like I am the one paying instead of getting paid.
A disruption of business
I used to work in the service industry, where stress and overwhelm were part of everyday life. There was always a table to attend to, a bowl that needed refilling, or a new table to set. Most tasks took time, but we always had routines to follow to make everything run smoothly. Because of this, whenever something unexpected happened, such as a tray of food getting knocked to the floor or a payment terminal failing, it derailed work and took ages to fix.
A disruption of business is what MS feels like to me. Even on a good day, symptom management can force me to change my plans completely. It can be frustrating and tiring. In an already packed schedule, finding a spot for dealing with MS can be tricky.
We can't control our symptoms
As most of us know, it's usually not as simple as saying, "Meh, I will handle it later" when symptoms worsen. A sudden bout of fatigue, spasticity, or cog fog often catches us off-guard and sometimes needs immediate attention. Running that errand, finishing that task, or socializing with those friends can feel impossible when having to rest and focus on self-care.
But this is just the way life works, right? You don't need a chronic illness to find your plans derailed. But carving out time for symptom management feels like all work, and no play. I'm just waiting to get back to "normal" so I can go ahead and do the things I should have otherwise already finished.
Always playing catch-up
I sometimes feel behind in life because I've said no, rescheduled, and postponed many things because of my MS. Working hard should pay off. But what's the ROI on dealing with MS? It can get tiresome to feel like going forward means playing catchup. One step forward, one unsteady step back. In the midst of feeling behind, I question what that means. Falling behind suggests a certain pace we must keep to be where we should be. It's easy to believe that our future selves could freely move forward if MS weren't part of our lives. But there is no guarantee that would be the case.
Asking myself the 'what-ifs?'
Now, I know MS looks different for everyone. Not everyone needs to deal with their symptoms daily, or even regularly. But in my experience so far, many of us feel frustrated about having to dedicate time and thought to dealing with our symptoms. If you're anything like me, you have, on more than one occasion, thought, "Where would my life be if MS never happened? What would I do with my day if MS wasn't in the picture?" And although it's not an unreasonable thought, it's an unfair one.
There are always things we'd rather dedicate our time to. Even before I was diagnosed with MS, I found myself looking for more time to do the things I thought would matter to me more. So even if we're playing catchup from dealing with MS, or any other time-consuming thing, we could all benefit from a healthy dose of perspective. We do what we have to to get by. Would we do something else if we could? Probably! But that's not the case right now.
Re-shaping my perspective
I'd be lying to you if I said I could think this rationally in my day-to-day life. I still feel like I could have "more life" if I didn't have to deal with my MS symptoms. That said, I'm not convinced I would use that time as effectively as I imagine today. I'm playing catchup, but I'm not sure what I'm trying to catch up with. My old self? The person I wish I could be without my MS? My friends? I'm not sure. There will always be a list of things I would do if MS weren't in the picture. It's OK to wish for those things - as long as they don't become the standard we need to live up to in order to feel like we're no longer playing catch-up.
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