Same Book, New Chapter

It’s been two years since I started this new chapter in my life titled: “You have Multiple Sclerosis.”

Initially, I noticed my left hand went simultaneously numb and tingly. Then, it crept up my left arm. Then, down my left leg, and then eventually, the entire left side of my body was numb.

My insomnia turned into fatigue that couldn’t be recovered from, no matter how much I slept. I drank coffee, lots of it - surely it would dependably energize me like it always had in the past. It didn’t.

I got massages to alleviate the “pinched nerve” I was sure I was dealing with. They didn’t.

Finally, I turned to friends and family and told them what was happening. I was sure they would agree with me that I had been overdoing life and just needed to relax. They didn’t. They told me I should be seen at the ER.

Hearing those words

So, reluctantly off to the ER, I went, sure that they would laugh me away, telling me I was worried for nothing. They didn’t. Instead, I spent 14 hours undergoing medical tests in an emergent fashion. Bloodwork. Stroke tests. CT scans. Finally, an MRI with contrast. As I lay there alone, more scared and anxious than I’d ever been in my life, the ER doctor finally came into my room and laid out the cold, hard findings of my tests. “We think you have Multiple Sclerosis. We found several lesions in your brain, and you need to see a neurologist as soon as possible.” I heard her but didn’t understand how these could be MY results. I took an Uber home alone from the ER around 3 AM. I held it together for the ride, probably in shock. It was a silent, 45-minute car ride with a stranger. The second I got in the door, I fell apart. I eventually cried myself to sleep that night. The next morning, when I woke up, the day prior felt like a bad dream until the doctor’s words hit me again.

Then my neurologist gave me more news

Within days, I was at a neurologist's office in downtown Chicago. No small feat - my Mom pulled off a miracle. We presented him with the imaging and findings. He sent me for more imaging - this time for my spine. We waited for his call. I was hopeful the initial findings were wrong. They weren’t. On a video call, he confirmed that my life was forever changed. “You also have active lesions in your spine. A handful. You need treatment right away.” Devastation, again. I made an appointment to go in and discuss the next steps.

There, the neurologist wanted to show me the images of my brain and spine. I refused. I was terrified and didn’t want a visual of the monster living inside me. (I’ve still never seen the images). I thought of my kids - how could I have MS and still be there for them? What would MS do to my abilities? The thoughts didn’t align well. I pictured myself in a wheelchair at school drop-off. I pictured myself blind and unable to drive. My youngest was six years old. This couldn’t be happening. He and his sister and brother needed me. I asked the neurologist a lot of questions. We talked about disease-modifying therapies (DMTs). I went home with a stack of pamphlets and information to read.

I had to learn about it and accept it to live with it

Everything I knew about my prior self was done. Chapter closed with no warning. But yet, in my mind, it couldn’t be. I tried to live in denial, “I refuse this diagnosis”, I thought. Then, MS showed me in my daily struggles exactly how it wouldn’t be ignored, reinforcing that it was the captain of this ship now. I had to not only learn to accept it, I had to learn how to live with it. MS, my new bossy roommate.

My onset symptoms subsided, and my permanent symptoms settled in. Reminders that MS lives here.

I feel there’s a common misconception that DMTs eliminate the symptoms felt by MS patients. They do not. They are used to slow down disease progression, which is the best position an MS patient can hope for in this incurable disease. When you prevent or delay new lesions, you’re also preventing new nerve damage that leaves behind permanent symptoms in its wake.

We have to learn how to avoid known triggers to prevent inflammation so our symptoms don’t impact our abilities to a greater degree.

This is what I've learned about my MS so far

It’s hard to make plans - how I’ll feel from one minute to the next can be very unpredictable. It’s better to not, than to disappoint people.

I can’t be outside in the heat - it triggers a central nervous system response of fight or flight, and sometimes panic if I don’t correct the situation quickly enough, because it only gets worse if I don’t. My whole life is planned around weather forecasts now. I used to love the sun and heat.

I wake up everyday with numb hands and feet. It’s harder to get ready for the day now.

Stress and/or heat make my right hand and foot go completely numb, and sometimes also my left toes. It also brings on major fatigue. Viruses do this too. All in response to central nervous system inflammation.

Large crowds and noise scramble my brain and make things confusing and sometimes frustrating.

I’ve gotten lost and confused driving in my own neighborhood. I have to use a GPS to go anywhere now.

But the fatigue may be the worst. Trying to get the same to-do list done today as I would have two years ago is almost impossible without breaks. I used to take so much pride in how much I could get done. I thrived on a completed list.

Remembering to give myself grace

There is an upside of this diagnosis in that MS has changed my perspective on life for the better. Yes, it’s in the list of the most terrible things that have ever happened to me, but I’m not blind, or in a wheelchair. I’m hopeful I never will be. So far, none of my symptoms include pain. I can still live independently and provide for my family. I can still contribute at work, at home, and with friends and family. I still have my humor and can laugh some things off.

I often think of the mantra, “new perspective, new goals”. I try to give myself grace (not easy!!). The laundry, the housekeeping, and grocery shopping will all eventually get done, bit by bit. I reserve my best energy for only the most important tasks of each day now and the rest of it gets pushed to a future to-do date. We play outside before it gets hot. We find fun stuff to do inside when it’s too hot. We take breaks. We laugh and joke around. Tickle fights are mandatory. We’re enjoying the little things. There’s nothing bad about that.

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