Five Years after MS Diagnosis: Then and Now

Five years after my multiple sclerosis diagnosis, I am looking back. From my quest for diagnosis, doom, gloom and uncertainties to five years later when I am totally rocking it.

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Intro: My Multiple Sclerosis Diagnosis

It All Started with a Blue Moon

Five years ago, we enjoyed watching a blue moon, which is simply the second full moon in a calendar month. The blue moon was a good way to describe my feelings of anxiety and worry about my diagnosis of multiple sclerosis.

Then: What will happen? Will it kill me?

Back then, I was feeling blue about the whole thing. Just before a European vacation, I found out that my recent MRI was showing lots of demyelination in my brain. Since I had no idea what that even meant, I did way too much obsessive googling and convinced myself that I was doomed.

When we returned home, I saw a neurologist. After a few visits and tons of tests, she diagnosed me with relapsing-remitting multiple sclerosis. In hindsight, I had my first relapses during my twenties, but didn’t get my MS diagnosis until 30 years later.

I teeter-tottered between “woe is me” and “I lived with this for the last 30 years and it still hasn’t killed me, so it is really slow moving and I am fine”. Still, I was worried.

Now: Sixty full moons later, I’ve got this.

After my diagnosis, I knew what was going on, and even more important, I now knew what to do about it. No, I can’t fix my MS, but I can live an amazing life, even with MS. Now that I know how the heat affects me and shuts down my nervous system, I can plan for it.

However frustrating it is, I know when I should take more time, use more cooling devices, or accept that I need a recovery period after exercise. Knowing what is going on has made all the difference.

Exercise After an MS Diagnosis

In the past, the medical community thought that exercise would make MS symptoms worse or trigger relapses. Nowadays, the benefits of exercise for MS-warriors are well established.

Back then: I was weak and a “Fall Risk”

Fortunately, I had a great neurologist who, among other things, referred me to a physical therapist. She did lots of testing to see what I could and could not do, and classified me as a “fall risk”

Kind of depressing but after testing me, she tailored an exercise program to me. From standing in the corner with my eyes closed to yoga and swimming, I had something to work on. Not a victim and weakling anymore, I slowly grew stronger and fitter.

Now: I am stronger, fitter and an #MShooper

Once I had my diagnosis, I looked for on line support and found the MS Fitness Challenge Gym on Facebook. A very positive community of members who battle multiple sclerosis through fitness, nutrition and mindset. I joined the 100,000 push ups challenge to help raise money for the MS Fitness Challenge gym.

In addition I restarted yoga (even was part of a study about yoga and MS) and I discovered hooping as a way towards fitness.

Life after an MS Diagnosis

Over the last five years, I have definitely grown into living with MS. Of course there are still hard times, but overall I am living a full and happy life with multiple sclerosis.

Then: “Why me?” and “It’s not fair!”

When you get diagnosed with a chronic illness, it is natural to go through the usual phases of mourning. Mourning for all the things you will most likely never be able to do anymore, longing for the fit and healthy person you used to be.

Although I had some bouts of self-pity, I continually got better at with my illness and my mobility issues. I learned to rely on walking poles when traveling with MS. On our first trip after my multiple sclerosis diagnosis (to Hawai’i), I took a surf lesson, hiked Diamond Head and accepted my mobility limitations at the Manoa Falls hike.

Life was calming down, I had a great medical care team and strategies and medications that worked for me. Well, and then the pandemic hit.

In between: The COVID-19 plague…

Since I take an immune system suppressant, Covid-19 was scary and unpredictable. Back to anxiety and worries. For quite a while, we had four of our offspring living at home. Which was actually nice since they could do the grocery shopping.

And luckily I like baking, so I started a Corona sourdough (Pandemic Popovers, anyone?) and we used birding as a perfect way to socially distance. We even were able to travel to Burlington VT at the end of summer 2020.

I was so happy when I got my first vaccination and felt more protected and less exposed. Life got to a new normal. Traveling around in our New England bubble was almost as much fun as flying to Europe.

Now: “I am an MS-warrior and live a full life traveling the world”

Slowly I got my bearings back and figured out what exercise program works for me. Thanks to my Fitbit and MS Fitness Challenge Gym friends, I push myself to taking more steps than I ordinarily would. Friendly competition is a great motivator!

In addition, being part of an on line hooping community has made me fitter and stronger. When I hoop, people don’t see my multiple sclerosis. Suddenly I don’t look handicapped anymore, instead I am an accomplished hooper. Every morning I wake up by blasting Dropkick Murphy’s Celtic Rock and hooping to get my endorphins going.

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Still struggling to get my yoga in as often as I should, but when I do, Yoga with Adriene is always there for me with free yoga practice.

Recently, we even started traveling farther away again. Just returned from a trip to Florida and planning to visit my family in The Netherlands this upcoming summer.

Five Years after my MS Diagnosis: Conclusion

Five years ago I was scared and worried. Now I am strong and confident. Knowledge and good support have made all the difference. If you are at the beginning of your journey with an MS diagnosis, know that you will be ok.

If you are a seasoned MS-warrior, let me know how the journey has been for you. Would love to hear about your experience in the comments. Till then, carpe diem!

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