Vickie Hadge, as told to Kara Mayer Robinson
I was diagnosed with multiple sclerosis in 2017.
Right before I was diagnosed, I had a hunch I had MS, so I started searching for information and finding out what I could do to live well with it as long as possible. I found a lot of opinions, books, and websites. I decided to follow the Overcoming MS program, which is a 7-step program that includes diet, lifestyle, and medication.
My Daily Routine
My mornings can be slow to start. My left leg is the most affected by my MS, and it can be stiff or uncooperative early in the day.
I typically roll out of bed around 6 a.m. I savor my half-caffeine coffee while reading the news and catching up with family and friends on social media, and then meditate. Then I try to go for a walk — weather and MS symptoms permitting. Sometimes I need to do a few yoga poses first to get out the tightness.
The state of our world has created new challenges for me. There’s a lot we’re dealing with: a global pandemic, climate change resulting in devastating weather patterns and wildfires, political unrest and uncertainty, and systemic racism that has reached a tipping point. All of these have changed my life and affected my MS.
For example, I used to have a regular workout routine at the gym. Now with the restrictions, conditioning is harder. I’m dealing with more stress and more boredom, so I go to the kitchen more often and my weight has crept up. Stress has also affected my sleep. The combination of stress, lack of sleep, eating more, and less effective workouts has made my MS symptoms worse. I have more muscle spasms, more tightness, more tingles and burning in my foot, more fatigue, and more brain issues, or “cog fog.”
It sounds like I’m a mess, but I’m managing pretty well. I’ve had to adapt, like many people have. I’m learning to love — well, at least like — online workouts. I recognize that stress is taking a toll, so I’m trying to do more meditation and exercise. I’m still not sleeping as best I can, so I’m working with my naturopathic doctor to try different supplements.
I also talk with my therapist. She helps me find perspective and gives me tools to use when I talk with my friends and family about MS, my symptoms, and how they can help me.
On a good day, I may rest for a bit after work, then exercise and make dinner. I try to do some kind of cardio or strength training in the early evenings. I head to bed between 9 and 10 o’clock and get in a bit of reading before lights out.
My fatigue is unpredictable, and it sometimes sneaks up on me throughout the day. If it’s a high-fatigue day, I’m pretty much done by 4 p.m. I work from home, so I shut down my computer and curl up on the couch for a quiet evening. It can be upsetting when I’ve made plans. Sometimes I get a bit cranky when I need to cancel because of that whole FOMO (fear of missing out) thing. Those are the days I get most frustrated with having persistent illness.
The Value of Support Groups
When I was diagnosed, one of the first things I did was to look for support groups. I started with the waiting room of my doctor’s office. First, I found resources for local groups. Then I looked online and found the National MS Society, the Multiple Sclerosis Foundation, and the Multiple Sclerosis Association of America.
I went to several support groups in my area to check them out. I met some amazing people and started some great friendships. I eventually connected with an old friend that also has MS and we started our own group to focus on living well with MS. I’ve also found online communities that can be incredibly helpful, in blogs, Facebook groups, YouTube channels, and Instagram accounts where other people with MS gather and share experiences.
The Keys to Living Well With MS
In hindsight, one of the gifts of finding out I had MS is that I’m healthier than I’ve ever been. Changing my diet and lifestyle wasn’t easy at first, but it’s helped me live well with my MS. Now I’m more aware of how my choices can make my symptoms flare.
I’ve also built a network that helps me navigate this sometimes-rocky road with unknown twists and turns. Knowing I have people to turn to that can help me along the way is key to being able to live well.