My MS Journey: Chapter 8-When MS Finally Spoke Up
There comes a point in living with a chronic illness where you can no longer negotiate with it. It stops whispering and starts demanding your attention. For me that point came almost a year after my daughter was born.
6/27/20263 min read
My Body Started Talking
For a long time MS had been a background presence in my life, something I was aware of and managed but that hadn't truly interrupted my daily routine in a significant way. That changed gradually, and then all at once. I started noticing that my balance was off in ways I couldn't ignore. My hip would constantly shift to the left, pulling my walk in that direction, and if I wasn't actively paying attention to how I was moving I would almost run into things. Something as simple as walking through a room required a level of focus it never had before.
The fatigue hit just as hard. Not the kind of tired that a good night's sleep fixes, this was a deep, heavy exhaustion that settled into my body and didn't let go. I had to start making deliberate choices about how I spent my energy each day because I simply didn't have an unlimited supply of it anymore. With two small children in the house who needed me present and engaged, I had to pick and choose carefully what I did and when I did it. Long periods of walking were no longer something I could push through. I needed breaks, and I needed them often. That was a hard adjustment for someone who had always just moved through life without thinking twice about it.
Learning to Accept Help
I want to be transparent about something because I think a lot of people relate to this. I do not like asking for help, it goes against my nature. My first instinct is always to handle things on my own, to push through, to figure it out without leaning on anyone else. But this season of my life taught me that there is wisdom in knowing when you need your village and actually letting them show up for you.
And show up they did. My husband was there in ways that mattered deeply, and the grandparents on both sides stepped in without hesitation. But the person who played the biggest role during this time was my mother. She took on the responsibility of watching both of my children while my husband and I worked, and she did it all the way until they were two years old. That gift cannot be overstated. Knowing that my children were with someone who loved them completely, who was teaching them things, giving them one on one attention and pouring into them every single day, that eliminated a fear I had carried since before they were born. I never had to wonder if my kids were okay. I knew they were. And I truly believe that the foundation my mother helped build during those early years played a significant role in why both of my children have done so well in school. That kind of intentional early care leaves a mark on a child in the best possible way.
Five Days of Steroids
When I explained my symptoms to my neurologist he recommended a five day steroid infusion to help bring the flare under control. The good news was that I didn't have to go into a facility every day to receive it, a nurse would come to my home and set everything up so I could administer it myself once a day. That convenience meant a lot given everything else I was managing at the time.
The bad news was that the medicine made me feel significantly worse before it made me feel better. The infusion drained my body in a way that was hard to describe to someone who hasn't experienced it. The closest comparison I can offer is that it felt like having the flu, that deep full body heaviness where even the smallest tasks feel monumental. That lasted for about a week or so before I started to turn a corner and gradually feel myself coming back to how I had been before the flare up.
You have to take the good with the bad. That has always been my approach and this was no different.
Taking MS More Seriously
This flare up was a turning point for me mentally. Up until this point I had managed my MS but I hadn't truly reckoned with it in a deep way. This season changed that. I knew I had to start taking my health more seriously — not from a place of fear but from a place of responsibility. I went online and started reading about MS in a more intentional way, specifically looking for information about the things I could actually control. Diet, stress management, rest, lifestyle choices, all of the factors that I had some power over. I couldn't control having MS but I could control how I responded to it and how I cared for my body in spite of it.
That shift in mindset was the beginning of something important. It was the beginning of me choosing to live well on purpose.
In Chapter 9 I'll share how that decision to take control shaped the next season of my life and what living with purpose while managing MS has really looked like.
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