Guest post by: Christine Rutherford
They tell you that you have MS, but no one tells you how it feels to live with it.
At age 44, this is my reality:
I can stand for 15 minutes before I need to sit down.
I can walk one block before I need to rest.
My MS becomes debilitating about once a week.
Fatigue. Anxiety. Mobility issues. Cognitive impairment. Mental health challenges. A merry-go-round of grueling obstacles that never seem to stop. Twenty years after being diagnosed with MS, I’m still learning not only how to deal with the physical symptoms, but the mental ones as well.
An uphill battle
Two decades into my MS journey, my physical ailments have shown no mercy. To this day, my fatigue regularly impairs what I can do. On an average day, I find myself having to rest about twice a day to get through a couple more hours. On a bad day, even if I lay down for most of the day, I won’t feel any relief.
When I’m fatigued, my walking becomes substantially shakier. Trying to push through it only makes things progressively worse until I get to the point where I know I will trip. The truth is, I have fewer good days than bad days, and I experience leg spasms daily. When I’m walking around the house, I need to use tables and walls as reference. If I leave the house, I won’t leave without my cane, my walker, or my scooter.
But what upsets me even more than my challenges with fatigue are the problems I’ve faced with my cognition.
I spent my entire career teaching as a vice-principal at a junior high school. As an educator, I always identified with being an intelligent person, with a strong sense of self stemming from being able to articulate and find answers for people. Since my MS has progressed, I have dealt with brain fog, difficulty focusing on conversations, and trouble finding my words. When my cognition is challenged, I start questioning my self-worth and anxiety takes over my world.
The unspoken truth about mental health
Seven and a half years ago, my condition hit an all-time low. As my mobility worsened, walking became a strenuous task, one in which I suddenly required a cane full-time. My state became so debilitating that I was forced to leave my job. I spent the next three months desperately trying to find myself, figuring out what I would do with the rest of my life. That’s when the panic attacks started.
I was lost. Trapped inside my own body. Unable to express how I was feeling. Suddenly, I always had to have someone with me. I remember sitting in a dark room with no TV or music on, my 58-year old mother holding my hand. I couldn’t even speak. Doctors kept giving me different medication, anti-depressants, anxiety medication – I felt so helpless that I kept taking what they gave me. I just wanted to get out of it.
After what seemed like forever, I was sent to a psychiatrist. Three months later, an MRI revealed that I had three new active frontal lobe lesions, which were causing the anxiety. Once they found that out and properly treated me with steroids, my life got drastically better.
Since then, I’ve realized that taking care of my mental health is a full-time job. I need to be rigid in so many aspects of my life and commit to the routine I set up for myself. Taking a pill or having a nap is only a temporary fix. It’s about restructuring my life in ways that are doable for me and doing the work that keeps me mentally and physically healthy.
Years later, I now have my routine down to a fine art.
The first hour of my day is sacred. I meditate. I journal both through writing and art. I have my light therapy machine on. Anything to get me out of my head.
Beyond my morning routine, I also take a yoga class once a week to keep me balanced and more mobile than I usually would be. I stick to a rigorous sleep routine, where I go to sleep and wake up at the same time. All of this has made a world of a difference.
Paying it forward
I now lead two support groups – one for those living with MS in Edmonton, and the other for teachers who have disabilities. I also paint and post my artwork with quotes for people to see the light in my world.
Over time I learned that knowledge isn’t something I should keep to myself, but something I should share with others. At my core, I feel like it’s my life’s purpose. I take an abundance of courses to support my healing and my mental health, and I like to share the information I learn with people in my support group. I know that we can have a much better world, and MS community, if people share what they know. For this reason, a year and a half ago, I began a blog called An Undefined Life where I write about living well with a chronic illness.
When you live with MS, it’s easy to feel like you have no one to talk to. I’ve experienced firsthand how easily isolation can consume you. I want to give my support group a sounding board to reduce that isolation and open up about their mental health. I want them to know they can find happiness in their own lives and feel confident enough to go after it. Just because they have MS, it doesn’t mean that they don’t have a number of skills and can’t contribute to their own or other people’s lives.
At the end of the day, all you can do is take what you’ve learned and share the lessons with the people around you. Learning is a gift, and the only way to pay it forward is by teaching others and hoping that your lessons will support the next person who is seeking a helping hand.
Like Christine, Canadians everywhere are performing Acts of Greatness in the fight against MS. Help fund acts of greatness that can change today for those living with or affected by this debilitating disease. Together, through actions big and small, we can change the future. Join the movement at www.actsofgreatness.ca.