My Life with Transverse Myelitis
I’d like to share just a snapshot of my life before Transverse Myelitis (a disease that affects approximately 1400 people per year in the U.S.) and what it looks like since this disease attacked my body.
Just about a year ago, I was feeling the best I had felt in a number of years. I had been on a weight loss journey for a couple of years and lost 70 lbs. I had begun a wonderful exercise routine of walking/jogging 2 miles almost every day. Life was good.
I was working full time as a Human Resource Assistant at a job I felt God created just for me 15 years ago. I felt like my contribution to this company was good, and making a difference. I worked with great people who became my 2nd family. I was involved in my church, and served as the leader of a healing prayer team that ministered to people each week. I attended a weekly Women’s Bible study. I felt blessed and loved serving in my area of giftedness. I also enjoyed times of bike riding, hiking and simply being with my two granddaughters, ages 7 and 12.
My husband had started working for a new company a couple years prior, and his job took him out of state, and out of town. He came home weekends, and we enjoyed our weekends together exploring, walking on the beach, eating out, and just spending time with each other and our friends. We live in a nice older home. I enjoyed decorating the inside, and working in my flower and vegetable garden outside. I loved bird watching, and just being out in nature. I loved to read and listen to music.
Two years ago, my life was turned upside down by a disease called Transverse Myelitis, something I knew nothing about. My onset was gradual over a few weeks’ time. These years have been the most difficult years in my life. My body has been taken over by this autoimmune neurological disease, and it has changed my life in significant ways. It’s been hard!
I now struggle to walk even short distances, and I now park in the handicapped parking spot at the grocery store. This task zaps my energy for the day. I had to leave a job I loved and a company had been with for 15 years. I miss my work, and my work family. Now, it’s work to just get out of bed and take care of my daily grooming needs before noon each day. I struggle to do housework. Gardening and yard work are not possible. I now watch the birds from inside, and my family has taken over the outside tasks I used to love. Heat is my enemy as it causes my symptoms to increase. I now listen to our church services online, because being in large groups of people is difficult and exacerbates my symptoms. I miss attending services with my family, and worshipping with my church family. It’s been hard being on the receiving end of meals being brought in, and help being given to me.
Any stress, good or bad, causes my symptoms to flair.
I still love the times that I spend with my granddaughters. It’s been so hard to tell them that I’m tired and can’t do the things I used to do with them. They try to understand, and still bring me so much joy.
My day is usually spent sitting with my legs and feet elevated. If my feet are in shoes or hanging down for more than ½ hour, they begin to burn and the feeling of pins and needles is painful. I ice my neck several times a day due to the tightness and muscle spasms I experience. Small tasks such as making my bed or sweeping the floor will exhaust me for hours. My body is constantly buzzing on the inside. My hands tremor and burn, and I find it difficult to write or type. I only wear loose fitting clothing because anything touching, especially on my left side does not feel good at all. Heaviness, weakness and fatigue are part of my every day experience. It’s hard to describe to someone what fatigue is like, but I say it’s not sleepiness; instead it’s not being able to will yourself to move, no matter how much you want to. I feel like I am carrying cement blocks on my arms and legs at all times.
I now take many medications to make it through my day. Meds for the internal buzzing, meds for the muscle spasms, meds to restore my energy, meds for depression, meds for anxiety, meds to sleep, increased meds over the past year for high blood pressure, and meds for the acid reflux due to all the meds I’m taking.
My concentration is not good, and I find it difficult to read and comprehend what I’ve read.
I love music, and used to like it loud. Now I find only soft music works, or my symptoms will increase.
This disease has taken a toll on me, physically, emotionally and spiritually.
I have been doing physical therapy in my home each day and have been blessed by a wonderful husband, family and friends who encourage, bless, and help me so much!
I continue to believe that I will get more recovery as I persevere, and trust God for His help and healing.
Vickie Boersema, Zeeland Michigan, 56 years old. One of the organizers of the Michigan Walk-Run-N-Roll Awareness Campaign.
