In January 2016, Health.com interviewed me for an article, "6 People Explain What It’s Really Like to Live With MS." A small portion of it was included in the article, and I'm posting the full interview here. Reflecting on my responses from almost a year ago, I'd say my answers still ring true for me today.
Can you describe your first symptoms? Were you ever misdiagnosed before learning it was MS?
The symptoms that led to my MS diagnosis were extreme fatigue and numbness. The first time I realized something was off was when I leaned forward at my desk and couldn’t feel the keyboard pushing against my belly. The tingly numbness progressively expanded within a few days to include all of my body from the bra-line down to my toes. I could walk, but I tripped more and fell a few times. I assumed all would be fine, and I even ran a 12K race with fatigue and a numb body.
I also realized after the fact that the fatigue I had been experiencing for years wasn't normal. I just thought each time I was exhausted that I was fighting a cold, stressed, or working hard and needed to rest. I also realize now that constipation was an early MS symptom for me.
I wasn’t ever misdiagnosed prior to learning it was MS. The results from MRIs of my spine and a spinal tap made it clear that I had MS and led to a diagnosis within a month of my first known symptoms. The number of lesions that were old and not currently active in my spinal cord made it obvious to my neurologist that I’d had MS for years.
When did you first receive your diagnosis? What was it like to hear?
My first known exacerbation involved three days at the overcrowded emergency room at Harborview Medical Center, a trauma center in Seattle, where I was told that the chance of me having MS was low. After a spinal tap, MRIs in the middle of the night, eye tests, and a round of steroid infusions, I was released with instructions to see a neurologist.
My diagnosis occurred at a scheduled neurologist appointment the morning of my son’s graduation. It was a complete shock to me, because I’d thought of myself as very healthy. I’d assumed the numbness I’d had would turn out to be explained by something simple and curable like sciatica. I knew nothing about MS, so my first reaction was to ask the doctor if she was sure (yes) and then if MS is fatal (no). The neurologist acted as though it was no big deal to tell me I had MS, gave me information on four disease modifying medications to review to decide which one to take, suggested I sign up for Bike MS, and gave me the book, “MS and Your Feelings: Handling the Ups and Downs of Multiple Sclerosis, ” by Allison Shadday. She also told me to look online at the National MS Society webpage to answer any questions I had. I was dumbfounded.
During my son’s graduation later that day, seeing elderly people with walkers and moving slowly held an entirely new perspective for me. I was scared for what my future held, and I just wanted to hold it together to celebrate my son’s big day.
The next day I began searching the web and library for any information I could find about MS. I called the NMSS and joined the local self-help group.
What is the biggest day-to-day challenge you experience?
My biggest challenge is definitely fatigue. I diligently monitor my energy level, and I take it seriously when it dips to the point of feeling like regular living is like trying to walk through water. I monitor what makes me feel energized and what taxes me, and I budget my activities and energy to maximize my productivity and happiness.
How about some of your happiest, most positive realizations or memories since being diagnosed?
The biggest shift in thinking I had that helped me transition from feeling betrayed by my body to feeling compassion for myself was to recognize that my body isn’t my enemy. My body is great at a lot of things, and my immune system sucks at distinguishing between foreign invaders and the insulation on my nerves.
Lots of people talk about having MS as struggling with MS, fighting MS, or battling MS. And that may work great for them, but it never resonated with me. Constantly fighting seemed exhausting to me when I was already experiencing extreme fatigue. And fighting myself made me feel powerless. Thinking of my body as a buddy that is doing the best she can made me feel like I had some control. It made me feel like I could help my body continue to do as much as possible for as long as possible.
In the past eight years I learned to worry less about what can go wrong, and I look forward to what can go right even if things don’t go my way. Specific things I’ve done since being diagnosed that brought me joy were doing yoga, learning to trapeze, singing karaoke, visiting France, walking a marathon, changing my career, and starting a blog, “Keep Doing What You’re Doing,” at http://stacieprada.blogspot.
What are the biggest life changes you've made to accommodate for the disease?
I’ve started making myself a priority in my life. I learned that diminishing my health and putting work or other people’s needs ahead of my own contributed to my MS disease progression. I learned that pushing myself when I’m tired or ignoring symptoms has a cost that I’m not willing to pay with my mobility or future health. I now make time to enjoy my life today and balance it with planning for my future. And when I can’t do everything I want to do, I accept it without guilt as a low price to pay for my future quality of life.
What are the biggest misconceptions about living with MS?
I think people want to believe that what works well for one person will work for every person and that if one person can do it than everyone can. We’re all different, and MS affects us all differently. While we can share our experiences and learn from each other, it’s all trial and error in figuring out how our bodies can best cope and thrive with MS. I’ve also learned that what worked for me last year may not work for me today. It’s constant adaptation.
What is your mantra for staying positive and strong while living with MS?
When I feel low my mantra is, “I will feel good again, I will feel good again, I will feel good again.” I also tell myself, “I don’t know what I need to learn or think about differently to live with this, but it’ll happen.” It helps me to stay open to lessons, believing they’re around us all the time. I trust that when I’m ready to learn the lesson I need, the opportunity will be there for me.
I also remind myself that things can always be worse and that my life is good. I try to change what I can, accommodate what I can’t by making changes in my life, and look at challenges with a different perspective to feel better.
What advice would you give to someone newly diagnosed
It’s more of an approach than a sound bite since each person is different, is in a different place in their lives, and reacts to an MS diagnosis differently. That said, I like them to know that they don’t need to figure out forever right now. If symptoms came and went prior to diagnosis, then they’ll likely continue to come and go. It will get better, and their life may even get great.
I actually wrote a blog post specifically on this topic, Pay It Forward: Talking To People Newly Diagnosed With MS. From the responses I provided to the interview questions, Health.com wrote the following:
"It’s all trial and error in figuring out how our bodies can best cope." — Stacie Prada, 45, county treasurer
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