My life changed on a dime in 1986 when the neurologist told me I had something called multiple sclerosis (MS). I had no idea what that was.
I knew my legs and arms were numb. Walking was difficult because I couldn’t feel my right foot. I was young and a bit cocky, but this was disconcerting.
What strange-sounding disease was invading my body?
Those were dark days for those with an MS diagnosis. It was before the internet. Social media didn’t exist. FDA-approved MS medications were years away.
I felt frightened and alone. I knew no one else living with the disease. What was going to happen to me? Could I still live the full life I always dreamed about? How would my boyfriend respond to this life-altering news?
There were so many questions and not a single answer.
When we’re faced with adversity, we have two choices: We can either do nothing and feel sorry for ourselves or find ways to live a joyful life within our abilities. I chose the latter. Like Dorothy clicking her heels, I had what I needed all along — the ability to not only survive but thrive.
In honor of MS Awareness Month, I wanted to share some things I never thought I’d need to do, or think about, until after I was diagnosed. I hope they’ll empower, educate, and inspire you to find your own list.
Today, I’ve learned how to look after myself in a way I never did before my diagnosis. I’m thankful for the work I did to create my new self-care plan because my life is no longer scary, but rich and full. Life is still delicious.
Fatigue is my nemesis. It never fails to visit daily. There’s no ignoring the obvious signals of weakness, numbness, and the inability to think clearly.
I wake up in the morning feeling semi-refreshed (because even with 8 hours of sleep I never feel fully refreshed) but by noon I’m a zombie. Doctors used to prescribe medications to curb the fatigue, but those never helped.
Instead, I learned to pay attention to my body’s signals, setting boundaries with others by communicating my non-negotiable need to nap. I rarely feel fully rested after a nap but at least it allows me a few more hours to finish the day with less fatigue.
Before I was diagnosed, I worked 12-hour days and enjoyed an active social life. I never thought about how much energy it took to get through a day. After I was diagnosed, I realized my productive hours were more limited.
My best hours are between 7 a.m. and 2 p.m. After that, I begin to drag. I smartened up by scheduling my mornings wisely, performing chores, work responsibilities, socializing, exercise, doctor appointments, or anything that needs attention in the earlier hours of the day.
My advice is to listen to your body and learn when your best energy hours are.
The importance of cultivating strong bonds can’t be overstated when you live with MS. We need people who are unconditionally in our corner on both good days and bad. No one should go it alone. We need the emotional and physical support of others to make our life complete.
Make it a priority to stay in touch with those you care about most, and who care about you as well.
The term self-care is overused these days, but the MS community should never take it lightly.
Exercising, eating a healthy diet, getting enough sleep, and having a positive mindset are all ways to keep yourself as healthy as possible, for as long as possible. There’s nothing selfish about investing in yourself as your first priority.
It’s crucial to find knowledgeable healthcare professionals you feel you can rely on. You must feel confident with their knowledge, their patience, and their ability to relate to your needs.
You should feel that your circle of doctors is your team! If a physician isn’t compassionate or not a good listener or simply not available when needed, you should find one who is better suited for you. You are deserving of the best care possible.
Learn to focus on the things you can be thankful for, rather than negativity. Being grateful maintains your self-esteem and lowers your anxiety. It reminds you of all the blessings that exist in your life. Keeping a gratitude journal is a useful tool to accomplish this important goal.
In short, MSers need to adapt and keep fighting for the quality of life we deserve. When life throws a curveball, you only have one choice: Learn to hit a curve.
Cathy Chester is an award-winning health advocate and freelance writer whose flourishing blog focuses on staying positive despite a diagnosis of MS. Diagnosed with RRMS in 1986 (before any approved medications or the internet), Cathy knows how frightening this unpredictable disease can be.
Today she helps others manage their MS journey by using her unique skills as a writer, patient, and certified health advocate. Her work has been featured in the National Multiple Sclerosis Society’s Momentum magazine, NARCOMS NOW, the Multiple Sclerosis Association of America, and many online publications, including Katie Couric’s newsletter about living with MS, Reader’s Digest, Woman’s Day, The Mighty, BlogHer, SheSpeaks, Erma Bombeck Writers’ Workshop, and The Huffington Post. Cathy lives in New Jersey with her loving husband and son, plus two adorable cats.