‘Tears in my eyes, I told my husband my legs went numb while running on the treadmill.’: Mom diagnosed with Multiple Sclerosis shares mental and physical health journey

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Recovering From Early Losses

“A diagnosis of Multiple Sclerosis inspired me to have hope, give myself grace and accept that what I do today is enough. Before I was diagnosed with MS, I was living what I thought at the time was a life of loss, grief, and some of the most painful days I would have to endure. I lost my mother to brain cancer when I was 12, my older sister to foul play, my father to Alzheimer’s, my twin sister to Gastroparesis, and then my marriage of 16 years fell apart.

Honestly, I didn’t know if I could find the courage to go on. I thought my days of having courage and being brave were maxed out. If you know grief, you know how heavy it is. It changes you. ‘The reality is that you will grieve forever. You will not ‘get over’ the loss of a loved one; you’ll learn to live with it. You will heal and you will rebuild yourself around the loss you have suffered. You will be whole again, but you will never be the same. Nor should you be the same nor would you want to.’ ~ Elisabeth Kubler-Ross and David Kessler.

About a year and a half after the death of my twin sister, Annie, I met and married who I describe as my saving grace. My husband, Cory, came into my life and saved me from loneliness, pain, low self-esteem, depression, and anxiety. My entire life, I have always made health, nutrition, and exercise a part of my day. Running has been my way to manage my mental health and cope with the challenges I faced especially the grief. It is a huge part of who I am.

family on walk together
Courtesy of Amber Knott

I ran 6 days a week and up to 70 miles. I loved road running and mountain running, and my newfound love was trail running. Running in the mountains brought a peace that I yearned for, helped me to feel close to my family members who had passed, and made me feel like I could survive all the heartache. Climbing a mountain in the early hours of the morning with friends gave me something I can’t explain.

Pregnancy and Motherhood

Ten months after I met Cory, I found out I was pregnant. I was thrilled and scared and overwhelmed because I was 42 years old and would be 43 by the time I delivered our baby. I wanted to grow our family, and yet, coping without being able to run the way I was used to seemed impossible. I knew I wouldn’t be able to maintain the miles or the terrain I was running on before.

Although my pregnancy went really well and I was able to deliver by c-section without any additional stress on me or my daughter, mentally I was a disaster. When I can’t exercise on a regular basis, my depression and anxiety consume and overwhelm my thoughts. I was meeting with a counselor regularly and learning new skills of meditation and positive affirmations to help me cope. Despite my efforts to manage my depression, postpartum snuck up on me and dug its claws into me, leaving me alone and misunderstood.

woman taking photo with newborn in her arms
Courtesy of Amber Knott

For someone who has struggled with depression my entire life, this was a new beast. It taught me compassion and empathy for women who have suffered from postpartum depression. Childbirth is so magical, and a newborn opens up your heart to a love unlike any other.  It’s hard to understand how something so magical can leave you feeling so sad and emotional. My son explained it best when he said, ‘Mom starts talking and she starts crying.’ I hope that in the future, I will take opportunities to reach out to others after childbirth to offer support like a few people did for me.

I worked really hard to get myself outside and walk as soon as I had recovered from my surgery. And then I slowly started to work back to running. I would get up to 3 slow, painful miles and feel so discouraged and fatigued. It was more of a walk/run which for me was a mental battle. But I continued to get myself out the door or on the treadmill and kept fighting the battle. I couldn’t lose my baby weight, I had food cravings I couldn’t control, struggled with extreme fatigue, and my depression was in full effect.

woman with child in her arms
Courtesy of Amber Knott

I wrote everything off as this is what I get for having a baby at 43. I felt so bad about myself. My daughter, Annie, who is named after my late twin sister, has been a sunshine that shines through all the dark clouds that life continues to throw at me. Honestly, I don’t know how I ever lived without her. We call her our ‘healer of hearts’ because that’s exactly what being around her does for everyone who meets her. She is almost too much for our hearts some days. But I still didn’t feel like myself.  I tried everything I had ever learned when it comes to health, nutrition, and exercise.

New Symptoms

In late January of 2021, I was putting on chapstick one day and my lips on the right side of my face felt numb. I thought to myself ‘that’s weird,’ but I didn’t tell anyone at this time nor did I think much of it. My numb lips continued to move up my face.  I thought it was bizarre but kept on living each day with the thought that it would go away. When the numbness continued into my right eye, I started to feel annoyed. It was spooky and strange not to feel my face when I would put makeup on or wash my face. Nobody could tell it was numb but me. And then it went all the way up and around my scalp. I couldn’t feel anything on the ride side of my entire face and scalp.  I started walking around the house singing, ‘I can’t feel my face when I’m with you, but I love it, but I love it’ by The Weeknd. I was distracting the concerns that started building by making it a joke.

woman in hospital bed with husband next to her
Courtesy of Amber Knott

At this point, my husband told me it was time to go to InstaCare and figure out what was going on. He was starting to worry. The numbness did not worry me as much as the squeezing head pain which I now know was a migraine. The doctor told me it was most likely trigeminal neuralgia and that it could be caused by several things. We determined it was probably my anxiety that was causing it, and he gave me a steroid. However, he said, ‘If you aren’t improving by Monday, you need to go to the ER.’ He said there were more serious possibilities, but he didn’t think it was necessary to assume that just yet. Not only do I hate going to the doctor, but I also hate taking medication. I felt a lot of pride that I had never had to take a steroid in my life. Steroids are necessary, but they are also something I never wanted in my body. So it’s ironic that I found myself with a disease where relapses can only be treated with a high dose of steroids.

Monday came and nothing had changed. I was discouraged, disappointed, sad, angry, and didn’t have time to deal with a numb face.  However, I never took any of the Prednisone prescribed to me the Friday before despite several people urging me to do so. To say I am stubborn would be an understatement. I expect so much strength because weakness is not acceptable. So I fake it until it becomes necessary to take any type of medicine.

On Thursday, February 18, 2021, with tears in my eyes, I told my husband my legs went numb while running on the treadmill. My headache had become unbearable, and it felt like my head was going to explode the squeeze was so tight. He said, ‘We are going to the ER today!’ I had a meeting at work I didn’t want to miss, so I promised him I would go after work. During my meeting, I became extremely weak and nauseous. I hobbled to my desk from the conference room and called my husband. In this moment, tears were streaming down my face. I felt defeated and scared.

In the Emergency Room

When we arrived at the ER, I said, ‘I hope this doesn’t take more than a couple of hours.’ My boys would be getting out of school and expecting me to be there to pick them up. In my mind, there was no other option than for me to be there. I was their mother and share 50/50 custody with their dad, and I don’t miss any of MY time with them. Even after my c-section, I was driving to get them when I wasn’t cleared to drive yet.

They took me to a room and the nurse and doctor came in asking all the questions about my symptoms and how they had changed over the past few weeks. The ER doctor ordered an MRI because of the numbness and severe head pain. I was waiting in the room for the results and the ER doctor walked in. She looked at me and asked me where my husband was. I told her he was in the restroom. She said ‘I am going to wait for him to return before I go over this with you.’ Immediately my heart started pumping and my anxiety went through the roof.

woman taking selfie in hospital bed
Courtesy of Amber Knott

When Cory came in, I could see the worry on his face as he came and stood next to me. The doctor proceeded to tell us that the MRI showed active lesions on my brain and that she had already spoken with the neurologist at St. Mark’s Hospital and he wanted me transported by ambulance immediately for an MS workup. My heart sunk. This didn’t make any sense. I was the healthy one in my family, and I was active and health-conscious. I couldn’t escape the image of a wheelchair in my future. I was devastated and shaking but tried to remain calm because we didn’t know anything yet and the workup would be extensive testing that would give us much more information.

As I was leaving, the ER doctor, with tears in her eyes, said, ‘I am so sorry.’ Especially since the following day, February 19th, was my 44th birthday, and I would be in the hospital on IV steroids and waiting to see if my life was going to change. For me, birthdays are a big deal. My twin sister and I celebrated the entire month of February. So to spend my birthday in a hospital stricken with fear as they poked and prodded me was bitter, to say the least. There are many diseases that can look like MS. As described by my neurologist, it is like putting together a puzzle. Each piece on its own does not give you an MS diagnosis. The spinal tap fluid is the final piece that confirms a positive or negative for MS.

woman with late twin sister
Courtesy of Amber Knott

The presence of oligoclonal bands indicates inflammation of the central nervous system and defines that you have had ‘multiple’ episodes or previous flare-ups. Mine was positive. With the new MyChart access, I was able to get my results before my neurologist called me to give me the news. When I read ‘positive’ I felt paralyzed with fear. I was alone because my husband worked nights and so I lay in bed thinking of all the ways my life was about to change. A positive for oligoclonal bands in conjunction with brain lesions, numbness and tingling on one side of the body, headaches, and fatigue is what led to a definitive diagnosis of Relapsing-Remitting Multiple Sclerosis.

Running Towards Recovery

My life as a runner came to a complete halt in this moment. I only knew myself as a runner and yet with MS I immediately started with all the negative talk of the things I would no longer be able to do. I spiraled into my depression. I spent my life dedicated to health and taking care of myself. Why is this my story? I have 3 young kids including a 6-month-old baby and 2 active boys. I have the most supportive, loving, compassionate, empathetic husband, and I still could not see a new normal being anything but disastrous. I made the decision early on that I wouldn’t sit complacent in my thoughts and let MS define me. I started educating myself on all things MS to distract my brain.

woman on a walk through the mountains with daughter on back
Courtesy of Amber Knott

I joined several Facebook groups to get support. What I found was that every time I spent time in these groups I was left feeling depressed, and I wanted to give up my fight. I quickly learned that the people in those groups needed them, but they were the ones who were really struggling, and I didn’t want my mindset to go down that path. The first thing I did was buy a pair of new running shoes and I registered for the St. George Marathon. I needed to know for myself that I could run a marathon. No matter what it looked like, I was determined to start and finish the race. The week of the marathon, I had a repulsive stomach flu.

Not the way you want to start a long-distance race; fatigue on fatigue and dehydrated. It was the hardest marathon experience I have had in my 30 years of running. It was a fight from mile 6 to all the way to the finish line. It took everything I had and everything I didn’t have. I had no get-up-and-go in my legs, which started to feed my mindset. That day was about so much more than a marathon for me and my family. It was about overcoming and persevering. I could not have done it without my husband, my kids, and all the encouraging messages I received from friends and family during the race.

woman running through the forest
Courtesy of Amber Knott

It was about believing in myself, loving myself, and letting others believe in me too. My emotions were very high. It took everything I had not to break down into tears so many times throughout the race. At mile 18, there was an inspiring athlete on the side with two prosthetic legs and one arm. He looked at me and said, ‘What is your why?’ It was as if he was talking directly to me. I started to think about his question. My why for that race was to show myself and my kids that we are brave and we can accomplish hard things even when everything is working against us. And my why was for all the MS warriors who are not able to run. I am grateful that my legs got me to the finish line that day.

It didn’t feel good, and I wanted to quit so many times, but I couldn’t, knowing my family was waiting for me to cross that finish line.  And when I finished, I fell to the ground.  My boys were there with flowers for me and sat there with me on the ground until my legs were ready to work again. I share this story because it was a turning point for me as I navigated my disease. ‘Sometimes we truly begin to find ourselves when we are so broken and weak, and in that moment, a spark ignites and we dig in to find the strength to stand strong and fight on.’

Living with MS

Multiple Sclerosis looks different for everyone, and that is why it can be so challenging and feel so lonely. The one thing that is the same is that because it is an autoimmune disease, our bodies are attacking themselves. Our fight is against our own bodies. And that can feel pretty discouraging most of the time.

mother with three kids and a dog going for walk
Courtesy of Amber Knott

Depression is one of the heaviest aspects of the disease. It is the part of MS that people don’t talk about and that nobody can see. In fact, almost all the symptoms of MS are unnoticed and to the outside world, you look fine. A common statement I hear is ‘you seem like you are doing so good with all the running you’re doing.’ I always struggle to respond to this comment. There isn’t enough time or the right words in the world to fully explain what living with MS looks like. Although I might look fine, I know I am not. And sometimes I go out of my way to make sure I don’t look as miserable as I might feel.

But my story is that I am not running because I am doing fine, I am managing my symptoms because I run. And because I stay consistent with supplementation, nutrition, exercise, mediation, sleep, and practicing different ways to regulate my mental health, I can enjoy my life with young kids. But that doesn’t mean I don’t struggle to sleep every night because my MS legs keep me up. That doesn’t mean I don’t have numbness and tingling in my legs and feet every day or that I don’t have to talk myself through the fatigue. And some days there is only so much I have to give and giving myself grace for those days is vital to keeping me in the right mindset.

Weakness is shunned in America especially. One thing I have learned through grief, loss, and my diagnosis of MS is that it is okay to not be okay. I always appreciate connecting with people who are real and willing to be vulnerable about what their struggles are. It’s refreshing and provides a space for me to be me. My favorite movie is Cinderella, and every time I drop my kids off at school I remind them to, ‘have courage and be kind.’ Having courage isn’t always what we think it is. Living with MS requires courage. ‘Courage doesn’t always ROAR. Sometimes courage is the little voice at the end of the day that says I’ll try again tomorrow.’ And that’s what my intentions are as I continue to fight the fight each and every day.”

woman standing in front of mountains on hill
Courtesy of Amber Knott

This story was submitted to Love What Matters by Amber Knott. Submit your own story here, and be sure to subscribeto our free email newsletter for our best stories, and YouTube for our best videos.

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