The Biggest Lesson from My Multiple Sclerosis Diagnosis: Why Wait to Start Living a Better Life?

My history

Rewind back to 2013. I had been running a nonprofit I started four years prior. We put on monthly fundraisers from start-to-finish. On paper and in pictures it looked like a life of gratifying events and a ton of fun–at times it was. But deep down, I was stressed and unhappy. I put an insane amount of pressure on myself and felt huge pressure from outside sources as well. Since I created this nonprofit, I felt full responsibility for its success or failure.

I absolutely loved the concept that I created, the nonprofits and people we helped, the people I worked with, and the respect I gained. But it’s lonely at the top of an organization. I was wearing every possible hat (many I was not skilled at) and I felt terribly overwhelmed. The stress of paying our employees, including myself and hoping I would have enough money to pay my bills without the help of my parents month after month, took so much out of me.

The stress, worry, and anxiety overtook the positives. To sum it up, I was in an unhealthy job situation, which was way more than a job–it was my life. And during most of these years, I was in an unhealthy personal relationship as well.

This perfect storm took an incredible toll on me. The stress manifested physically in the form of constant neck pain. I didn’t make any changes, I simply attributed the discomfort to my work and lifestyle that after all, I created.

Eventually symptoms I couldn’t ignore arose and I sought a specialist about tingling numbness in my spine, feet, and left hand. He genuinely thought it was due to stress and suggested acupuncture. I went and my symptoms went away. “Great, I’m all good!” I went back to the same lifestyle. 

A false start to my lifestyle change

In 2014, my husband and I were surprised to find out we were pregnant a couple weeks before our wedding. This was my perfect excuse to make a big lifestyle change. I decided to wrap up my professional work to focus on my pregnancy and eventually be a stay-at-home mom. I always dreamt of being a young mother. My son was born in September 2014. Quick recap–emergency c-section, I thought I could do motherhood all on my own, identity crisis, isolation, situational postpartum depression. This was definitely the hardest, loneliest, and most exhausting time of my life–cue more stress.

Without realizing, I was experiencing long-term toxic stress. A year after giving birth, my feet went numb again. Then came the electrical current down my spine every time I moved my head down. I let this go on for weeks. I came up with every excuse as to why this was happening. Finally, I made some appointments. I was now a mother and had to take care of myself.

My diagnosis

The first true chain of events with my diagnosis came in October 2015. I had a positive ANA test. “Huh? I have no idea what that is.” More follow ups were needed. I start down the path with a rheumatologist. I attempted to cancel my scheduled neurologist appointment. I had such little bandwidth at this point and I just I didn’t want to deal with any of this. Thankfully, my husband didn’t let me cancel.

The next month, the call I’d been both eagerly anticipating and fearfully dreading came from the neurologist. I was enjoying a casual dinner with my husband and son at one of my favorite spots (Casa de Luz for all of you Austinites) and missed the call. The neurologist then called my husband’s phone. She was certain I had Multiple Sclerosis (MS). I was shocked and upset, but had this weird sense of hope. I was familiar with MS and knew there were treatments and hopefully a cure not too far out.

Honestly, I felt a relief. I now had a real reason to slow down, to take the pressure off, to stop saying yes to everyone else.

When I walked into my neurologist’s office a few weeks prior, my symptoms were a dead giveaway to her, especially the electrical current that went down my spine. She immediately ordered “MS Protocol” for my MRI, although I didn’t notice.

January 2016, my lumbar puncture confirmed my MS diagnosis. At this point, I wasn’t surprised at all – it all just felt like a pain in the ass. After certain MRIs, I couldn’t breastfeed my son and in order to start medication, I had to quit breastfeeding completely (which I wasn’t ready for).

The diagnosis was interfering with my life, but with time and perspective, I now see it as a blessing.

My life now

By now we know the real and dangerous effect stress has the mind, body, and spirit. And the way I was living pre-diagnosis would have inevitably led to a breaking point. The longer it took to break, the harder the crash would be.

My diagnosis came when I was 28. Even then I knew I wasn’t too far gone; it wasn’t too late to change the direction of my life. It was a diagnosis I could handle and manage, and if it had to happen, timing was actually ideal.

That perfect storm I mentioned before, I created it–no one else. This awareness was key. Knowing I was responsible for it helped me understand I also had the power to change it.

Over the past two years since my symptoms got their name, reorienting my life to live more free from stress is exactly what I’ve been doing.

Bear with me – it’s a journey, and I’m not perfect. I’m certainly not a peaceful monk who is entirely free from stress, anxiety, and frustration; but I feel 100% confident in my life and the choices that I make. Life guarantees no promises, but while I am here, I want to live a healthy and happy existence. My new and improved lifestyle includes:

  • Therapy
  • Body work such as massage, acupuncture, chiropractor
  • Eating healthy, organic, 100% plant based, and mostly an anti-inflammatory diet
  • Removing chemicals from my household, skin care, and hair care routines
  • Exercise
  • Clearing my plate of responsibilities that no longer serve me
  • Saying “no” often, and canceling plans last minute if need be
  • Getting enough sleep at night and napping during the day
  • Not stressing about small things that don’t matter
  • Boundaries with work
  • Working on passion projects
  • Alone time – yes, time away from my child and husband
  • Time away from my phone and social media
  • Little to no alcohol
  • Quality over quantity in terms of people and possessions
  • Reading
  • Walking
  • Cooking/baking
  • Surrounding myself with amazing people who make me happy
  • Being kind to myself
  • Hiring help as needed (I have a housekeeper three times a week–no shame and I know how lucky I am)
  • Removing myself from unnecessary drama and stress almost immediately
  • Saying goodbye to toxic people
  • Supplements, including vitamin d and b12 (I first did genetic testing and blood work)
  • Spending quality time with my husband

And I always try to remember that my self-care routine does not make me a selfish, rude person.

I also started MS treatment in the end of 2016. I had gone almost a year since my diagnosis without being on medicine – I wasn’t ready to give up breastfeeding. I also hated the idea of taking medicine.

Then, in August 2016, I had another wake up call. My son and I both got sick with a nasty virus. I didn’t sleep for days and then I went tingly and numb from my waist down. Every time I would step out of bed, throughout the night or in the morning, I would pray that my feet would feel “normal” again. The feeling, or lack thereof in the lower half of my body, was on my mind ALL. DAY. LONG. I was scared that this would be my new normal. I couldn’t participate in my usual activities and thus dropped out of a volunteer role I had taken on. It affected my work and every – I mean every – aspect of my life. I was worried about big things in my life like if I would ever truly enjoy sex with my husband again in our lifetime. My body did not feel like my own. It was daily torture.

After treatment started and stopped (due to nasty side effects), and started again, my flare up subsided after six months. My feeling came back for the most part. I still experience light tingling and numbness in the bottom of my feet; my legs tingle if I walk quickly, run, or do certain exercise; and my legs throb at the end of a long day. I constantly manage my neck pain, but it’s so much better. And I am often tired…but I am also a mom, so who knows?

My current life choices are my medicine, and I have not had a flare up or any active change on my MRIs since that time. This is a very good sign. I’m always learning more, opening my mind to new ideas, and implementing changes in my life so that I can stay on this path.

The biggest lesson

I truly feel grateful. My situation could be a lot worse. Holly Butcher wrote a moving letter before her death, at the way-too-young age of 27. Everything she wrote speaks to me loud and clear.

“Be ruthless for your own well-being.” Yes, I have Multiple Sclerosis. Even with that diagnosis, I feel healthier, happier, and lighter than I did five years ago. I am ruthless. And what a blessing it is. Why wait for a diagnosis to start living a better life? Start now.

Post Author
Alex Winkelman
Alex founded Hello My Tribe not because she was an expert on motherhood, but because she was a mom who desperately needed support and community. During those tough first months of motherhood, Alex spent day after day reading and learning about motherhood. She learned: 1. She wasn’t alone in her feelings about motherhood. 2. Everything we could have ever dreamt of existed for the baby, but there was a lack of resources for the woman/mother 3. There are many maternal health issues in our country that need attention and need to be addressed. Hello My Tribe was built upon these needs. Previous to launching Hello My Tribe in 2016, Alex was a professional and volunteer fundraiser, raising millions of dollars for non-profit organizations. Alex lives in Austin, TX with her son and two rescue dogs.