What I’ve Learned While Managing My MS Symptoms

When I was diagnosed with MS in May of 2017, it was a relief to have a diagnosis for all the symptoms that I had been experiencing over the last 20 years! It was confirmation that all of these things were, indeed, not in my head! That relief quickly faded a month later when HR informed me that they could not provide the reasonable accommodations that my neurologist and therapist so thoughtfully helped me put together in order to keep my job. It wasn’t until the following year (a few flare-ups & DMTs) that I finally accepted that. I mean, how DO you provide reasonable accommodations for someone who literally never knows when they’re not going to be able to come to work or for how long?

I've always tried to make the best out of it all

As determined as I was to make lemonade out of those lemons, the constant lack of funds and inability to work eventually led me to be homeless with a 2 year old. I remember sitting in that homeless shelter one day just thinking, “If I never would have found out about this elusive illness that people are calling MS, I never would have known, I would have pushed through, and I wouldn’t be here now.” I didn’t know then that couldn’t be further from the truth.

That relief has turned into a different beast

I eventually found an apartment but still felt as helpless as I was when I was homeless at times. This thing called “MS” that initially provided validation and relief, was now like a splinter that I just couldn’t get rid of.
With radical acceptance, I began the Social Security dance. Over the next 4 years, that radical acceptance began to morph, once again into self pity, depression, anger, and anxiety regarding all the things that I could no longer do. My heart felt like a never ending sinking ship with each denial letter I received from Social Security. “There must be some job I could do on a consistent basis and be self sufficient,” the Judge insisted! And that is the exact moment that it hit me! That word! Consistent.

Change is inevitable

While I do prefer consistency, the fact was, for the last 24 years nothing in my life had been consistent with or without a diagnosis.

Pre-diagnosis: I learned new and different ways to get things done even when I had no idea the root cause of my symptoms.
Post-diagnosis: I learned new, different, and more efficient ways to get things done while learning to manage my symptoms due to my diagnosis.

One thing I’ve learned while managing my MS symptoms is that change truly is inevitable. It’s the nature of life. Yes, many of the changes in my life were due to an MS diagnosis. Barring MS, life still would have changed in some way. I still experience all the emotions that come with limitations.

What MS has taught me so far

Managing my MS has taught me self compassion, especially in those moments. I’ve learned to appreciate those small things that I probably would have taken for granted otherwise. Like just being able to get out of the bed, on my own, walk outside, and enjoy the sunshine. I may have to do it differently now. But knowing why certainly helps me plan ways to still enjoy that. Most of all, managing my MS symptoms has taught me to cherish and bask in those good moments, no matter how fleeting; because I know that life, much like MS symptoms, can change at any moment.