Writing with MS: Rebuilding a Passion

Prior to my life with multiple sclerosis (MS), writing was always something I really enjoyed. Whether it was an essay in school, one of my many creative writing projects, or journaling: it was always the most expressive form of art I had.

However, after MS came into the picture, writing became more and more challenging with time and the progression of my MS. Eventually, my ability to overcome these challenges turned into an ever-growing frustration. Something I once loved was slowly becoming something I wanted nothing to do with.

How MS makes writing a challenge for me

As everyone living with MS knows, one of the favorite pastimes of MS is to find ways to make everything we do more difficult. My ability to write was no exception.

Physical

My declining fine motor skills brought an end to touch typing, making it nearly impossible to locate keys without looking. This physical limitation combined with my poor vision ruined my posture, since I was now leaning forward to better see the screen and what I was typing. Upper back and shoulder pain were becoming a seemingly unavoidable part of my life.

Cognitive

Then there were the cognitive challenges. Organizing my thoughts and putting together coherent sentences felt like trying to force a square block through a circle hole. I constantly lost my train of thought, and focus became as elusive as Big Foot.

Fatigue

And of course, there isn't a single part of my life that isn't impacted by fatigue. There have been many times where I wanted to write, but I was just way too fatigued. Sometimes mentally, sometimes physically, usually both. Just like it does with everything else, fatigue makes everything a thousand times more challenging.

A stressfully overwhelming experience

For the longest time I was able to just push through all these challenges. There were many times throughout the ups and downs of my MS that I would start trying to adapt and change the way I did things. Unfortunately, I’m a creature of habit, so nothing ever stuck… I always found myself gravitating back towards my old writing habits, even though they were becoming increasingly less effective.

Eventually, I started to feel like writing was no longer something I enjoyed. Writing was just another chore on my to-do list. Whether it was my MS or some new solution I was trying to use to work around my MS, I always felt so distracted from what I was trying to write. In fact, I was no longer associating writing with anything positive; I was automatically associating it with stress and frustration.

The breaking point

One day I was trying to get some writing done, but for whatever reason everything seemed to be extra challenging. I couldn’t seem to put my thoughts into words, my brain was all over the place, I was fatigued, I was missing more keys than I was hitting, my back was killing me, etc. I was so overwhelmed I could hardly stay focused on what I was trying to do.

I think the stress of it all had been slowly building up over recent years, and I had now reached my breaking point. In a small fit of frustration-induced rage, I just slammed my hands down on my keyboard before shoving it and everything else on my desk away from me.

“I can’t do this anymore,” I said out loud to myself.

I pushed myself back and away from my desk, turned off my computer, and went for a walk to cool down a bit. This is when I decided that I needed a break from writing.

Trying to get back in the game

For a couple of months, I didn’t let myself think about any of this. I just needed to destress and think. Once I felt ready to confront this issue again, I started working on a list of all the different things that were preventing me from enjoying writing. Next, I started working on a list of possible solutions. If I was going to rebuild my passion for writing, I needed to establish a new writing workflow and set of habits.

I spent a lot of time learning some new voice recognition software, making lots of accessibility changes to my computer, and exploring new ways of keeping my thoughts organized. I even gave my office space a bit of a makeover to create a more calming, “stress-free” writing environment. It’s amazing what a new coat of paint can do for your mind!

Remembering the importance of adaptation

While I've always been good at adapting to the change MS brings about, I now see that, when it came to writing, I was unintentionally resisting change. This resistance only made the frustration and consequent stress way worse than it had to be. Now that I'm more aware of that, I'm finding it much easier to change, and want to change, the way I do things. Not only when it comes to writing, but in all aspects of my life.

In future posts, I'll delve further into this topic and explore how you can take advantage of the many accessibility options out there. But for now, I'm focused on refining my writing habits and optimizing my workflow so I can continue to get some writing done despite MS.

What about you? Have you encountered similar challenges with MS? How did you overcome them? Share your experiences below!