Curt has learned a lot in the five years since the day he was diagnosed with MS. In part two of this two-part post, he talks about three crucial lessons that have impacted his life since his last relapse in November 2016.
To view the first part of this two-part post, click here.
The last new MS symptom I developed made it feel like I had just ridden a horse made of sandpaper.
It was late November 2016, and I had just sat down to work after a lunch break. I don’t remember exactly what was on the menu that day, but I do remember I went overboard with the dessert: a full-sized dark chocolate bar that we had picked up on a pre-Christmas sale at a local store.
Despite largely maintaining compliance with our new diet during the 18 months since my diagnosis, I was starting to allow myself the odd cheat meal and a little extra dessert here and there (after all, Christmas was coming up!).
As I dove back into a stressful work task with an end-of-day deadline, I suddenly felt a distinct burning sensation in one small area of my inner right thigh, as if someone was holding a lighter up close to my skin. I initially brushed it off – maybe I had rubbed my skin somehow when sitting down?
But over the next half hour, the ‘lighter’ quickly turned into a full-on blaze as the painful sensation spread to both thighs. By that evening, even the lightest touch to the skin’s surface would send pain searing through my legs.
By then I knew: it was an MS relapse, and new lesions had likely formed on my spinal cord: typically the source of sensory symptoms in people with MS.
While Tina and I had taken steps to improve our diet and lifestyle after my May 2015 diagnosis, in November 2016 there were still old habits that were either hanging on or creeping back in:
- I had fallen back into the habit of occasionally treating myself to sugary iced cappuccinos from a local coffee shop.
- I had resumed charging my phone in the bedroom after initially moving it outside to avoid the temptation and sleep deprivation it was causing.
- I was skipping my morning workouts in favour of catching up on emails and social media before the work day officially began.
But most importantly, my mindset had shifted in the 18 months since my diagnosis. As I started feeling better and my symptoms started fading, my subconscious started convincing itself that is was OK to start going back to the ‘way things were’ a bit more. That it was OK to relinquish some of the control I had gained over my health.
That maybe my initial MS symptoms were an isolated thing, and I’d just gotten unlucky?
But this new relapse brought reality crashing down and quickly quashed any thoughts that I could get lazy with our new healthier lifestyle. From that moment on, my mindset shifted.
Here are three additional important lessons I’ve learned since that moment:
1. Mindset is (almost) everything
I remember sitting in a university psychology class a few years ago. The instructor was discussing how people respond differently when faced with adversity.
Many people, he said, react to negative events with an external locus of control: they immediately look for external factors to blame, such as other people, fate, or just bad luck.
Other people, the instructor continued, have an internal locus of control. When something negative happens, they immediately look to their own behaviours and think about what may have led to the event, and how to improve in the future. Deep down, they know they have the power to ‘create their own luck’.
Some examples of each locus of control (LOC):
Scenario 1: Not getting a job after a grueling interview
External LOC: “Ah, my education and work experience probably didn’t fit what they were looking for. Probably just fate. Nothing I could have done.”
Internal LOC: “Ah, I should have been more prepared for the interview. I’ll make sure I’m ready with answers to those questions next time.”
Scenario 2: Failing a big exam
External LOC: “Man, the teacher made that test too hard. No amount of studying would have helped.”
Internal LOC: “I totally missed studying that one part of the course. Next time I’m going to clarify the teacher’s expectations, and develop better study habits.”
Scenario 3: Being diagnosed with a chronic illness
External LOC: “That sucks. Must just be in my genes. All I can really do is take this medication they recommend and hope for the best.”
Internal LOC: “I’m going to research to find out the causes and factors that went into my diagnosis. I’m going to do whatever I can to improve my chances to heal.”
You can clearly see the differences between these two mindsets. You can also imagine how adopting each mindset would affect the small decisions we make in our everyday lives, from which foods to eat, to our exercise and sleep habits, to our thirst for knowledge and self-improvement.
There have been people in my life from each of these two camps, and I’ve seen first hand how continuing to blame a negative life situation or illness on external factors or on ‘fate’ can do tremendous long-term damage. But when you truly believe you are in control of your health and your life, and that ‘help is not coming’, you quickly realize it is up to you to change your mindset and habits in order to create your own luck.
After that last MS relapse in 2016, I vowed to always adopt an internal locus of control; to always take the mindset that I was going to do everything in my power to remain healthy without being dependent on others, or putting all my trust in a medication, or waiting for a miracle MS cure while refusing to give up my old unhealthy habits.
It started with getting back on track with our diet and has stretched into all facets of life, affecting the many small decisions Tina and I make every day – from whether or not to work out, to deciding to take a walk outside (even right now, when our seasonal allergies are really making life annoying), to choosing to occasionally put our phones on airplane mode to de-stress.
We’ve also chosen to use this blog to help others on their healing journeys, which in itself has had a wonderfully therapeutic effect!
Of course, there are always certain life situations and events that we have little control over and truly aren’t caused by something we have done or could have prevented. We can’t control these, but we can choose to focus on what we can control to make the best of the situation. No matter what, I always remember that I’m in control of my own thoughts; that I can always ‘choose happiness’ and think about things that are positive.
When something negative affects you, do you react with an external or internal locus of control? It is this single question that I believe has the greatest impact on whether or not a person stricken with a chronic illness is successful in their healing journey.
2. Support is essential
Shortly after my diagnosis, Tina and I joined a couple MS-focused Facebook groups where people of varying backgrounds could compare notes and share their experiences.
In scrolling through the comments, one thing that struck us immediately was the amount of complaints from people who were frustrated by the people in their lives who didn’t support them or share their mindset in their efforts to heal. Some examples:
- “I’m trying to avoid sugar but my husband has to have his chocolate chip cookies so he keeps buying them. It’s hard to avoid when it’s in the house!”
- “My neurologist says diet doesn’t affect much when it comes to MS, and he keeps pushing me to take these drugs. But I’ve read that diet can have a positive effect. I’m not sure what to do!”
- “I wish my work was more flexible; some days my fatigue gets overwhelming but I’m afraid if I call in sick I’ll be let go.”
Reading these stories, we felt sadness that these people weren’t receiving the support they needed and deserved. Simultaneously, I felt tremendously lucky to have the support I do in my healing journey. I have a workplace that is understanding if I need to take a day off here and there for an appointment, or to rest and recuperate. My neurologist, although not perfect, acknowledges that lifestyle can play a role in healing and, so far, supports my decision not to take DMTs (disease-modifying therapies). I regularly go to see a naturopath who herself has MS and has been successful at healing naturally using strategies she has shared and I have adopted.
And most importantly, I have an amazing wife who not only supports our new, healthier lifestyle (and has even given up some of her previously beloved foods, such as pizza, in the process); she has found purpose and joy in discovering and experimenting with healing foods, and sharing her recipes with others so that they can also benefit. I’ve told her repeatedly that she’s welcome to buy and enjoy ‘off limit’ foods (preferably without telling me so I’m not tempted!). But she nearly always opts instead to experiment to find healthier alternatives that satisfy the same cravings.
And luckily, I get to play the role of ‘taste tester’ for her recipes, including her Fudgy Coconut Zucchini Brownies and possibly my favourite, Avocado Parsley Dressing, which I add to everything. I can’t imagine where I’d be without her – likely eating my go-to ‘healthy’ meal during my bachelor days: plain baked chicken breast, steamed broccoli, and a boiled potato. Yum…?
I’m tremendously thankful that the people in my life all support our commitment to healthy living. They’ve made it much easier to stay on track (for example, my wonderful stepmom is familiar with our diet and always whips up a ‘Curt-friendly’ alternative at family holiday meals).
If you’re dealing with MS or another chronic health condition, I sincerely hope you’ve found support with those closest to you. If not, my advice is to seek out those who support you fully in your healing journey, and have honest discussions with your spouse, your doctor, your friends, and/or your boss about what you need to make sure you remain on track on your journey towards optimum health. Having that support can make all the difference in the world.
3. Always choose hope over fear
As I alluded to in Part 1 of this post, many terrifying questions began flooding my mind in the days immediately following my diagnosis. I hear a lot of people say that they had “their whole life planned out” before their diagnoses shattered their visions for an ideal future.
And I’ll admit, I started falling into this trap myself initially, unable to imagine anything but the worst-case scenarios:
- “What if Tina doesn’t want to stay and deal with someone with an illness?”
- “What if I can’t work in a few years because of my symptoms? Where will I get money?”
- “Will I want to have kids? What if I can’t support them?”
- “What if my symptoms eventually affect my ability to play drums? Will I have to give it up?”
- Etc.
Fortunately, this mode of thinking began to subside as I started reading and researching about the illness, understanding its potential causes, treatments, and lifestyle changes that could promote healing. Most importantly, I learned about success stories:
- Dr. Terry Wahls, who successfully recovered from secondary progressive MS after being confined to a wheelchair. She now has full mobility and bikes regularly.
- Dr. George Jelenik, who also has MS but has remained symptom-free for decades by following a diet that emphasizes low saturated fat and high ‘good’ fats among other healing foods.
- Matt Embry, a fellow Calgarian who has healed his MS by following the ‘Best Bet Diet’, developed by his father, Ashton. Matt has gone on to release a documentary on his experiences with MS, and runs MSHope.com.
Of course, I also heard stories from the opposite end of the spectrum. People whose health had quickly declined, those who developed significant disability, and yes, some who had passed away at a young age.
So in reading these stories, I had a choice – I could continue to imagine the worst-case scenarios, dreading what could happen. Or I could choose to focus on the positive stories, learn from their experiences, and believe I had the power to change my health for the better. Put simply, I could choose fear (negative thinking) or hope (positive thinking).
And, knowing how anxiety affects the body and how stress—particularly continuous anxiety and emotional stress—can worsen MS symptoms, the choice was pretty clear.
This early realization helped during my last relapse in 2016; I wasn’t incredibly worried because I knew I had started cheating with our healthy lifestyle and knew there were definite ways I could improve. From diet, to stress relief, to exercise, to strengthening interpersonal relationships, there is always something that can be tweaked to get back on a path to better health. And in addition, as every day passes more research is done on optimal treatments and lifestyle changes for those with MS.
It’s this hope, this thirst for knowledge, and this desire to ‘control what I can and forget the rest’ that have helped me greatly along my healing journey so far, and I believe can help others who are also struggling with illness.
While I’ve learned a lot over the last five years since that day in the neurologist’s office, I know that my journey is really only just beginning. Statistics show that the majority of MS patients eventually experience worsening symptoms until the disease has a major impact on their day-to-day lives.
But, like in all statistics, there are outliers.
I read stories about people like the aforementioned Dr. Wahls, who pulled herself back from being on the brink of significant disability and is now thriving. I read about some with MS who are in their seventies and eighties, symptom-free. And I read about many who are healing and flourishing naturally with healthy diet and lifestyle changes, like Matt Embry of MS Hope.
I’m determined—and Tina’s damn determined—to make sure I end up on the right side of the curve.
Do you have MS or another illness? What lessons have you learned over the course of your healing journey? We’d love to hear your feedback in the comments.
Curt is successfully optimizing health and healing illness (and helping others do the same) with the help of his wife, Tina. Read Curt & Tina’s inspiring story, “From on our heels to On Our Heals”. Feel free to send them a message.