Living With MS: What I Wish I Had Been Told When I Was Diagnosed

If you’re newly diagnosed with Multiple Sclerosis, I’m happy to give you my number with the understanding that you may never call me because:

A) I’m a stranger

B) You’ll probably spend the next 6 months scouring the internet and come across a plethora of amazing and downright dangerous suggestions that you’ll try before calling me or anyone else for that matter.

I completely understand. When you have a disease that doesn’t have a cure, you tend to subsidize western medicine with non-traditional options as you search for answers. Now don’t get me wrong. I’ll happily pop the “MS Cure All Pill” once science creates it. I’m also open to revamping my stem cells and/or fixing or replacing whatever freaky gene caused me to get this disease in the first place. But until science catches up, I’m trying whatever else is available.

This approach requires reading many articles, researching new findings, discovering new tools and equipment, and embracing holistic approaches to health while seeking out recent, never-before-heard scientific advancements. This happens because when you’re diagnosed with Multiple Sclerosis, besides taking one of the more than a dozen available disease-modifying drugs, no one tells you what to do. There’s no standard MS protocol to follow. Science has no idea which diet works, which exercise is best, or which drug is better. Thus you fall down the Internet rabbit hole while looking for things to try.

Since I’ve had Multiple Sclerosis for almost a decade, I thought I’d write out what I wish the Neurologist had told me on that warm September day back in 2009. If I could go back to the moment I was diagnosed, this is the pamphlet of information I would give myself and refer back to daily during the first year.

A chronic condition is just that – chronic – so you can either spend a ton of time trying to do the impossible and eradicate it OR learn to live well with it. You will definitely find someone online who claims to have gotten rid of MS through diet or visualization or yoga or medical marijuana or a specific medicine or prayer or training for a triathlon, or listening to beta waves during REM sleep. But most patients simply learn how to live well with terrible diseases by planning for terrible days while taking advantage of their good days. Of course, good days occur more frequently once you find the best forms of diet, exercise, stress release, and medication for your particular body, mind, and spirit.

But a chronic condition is just that – a condition – which is a state of health that changes. So even if you do everything right, you will experience a terrible day due to your diagnosis.  Likewise, if you don’t take care of yourself, you can skate for a while, but it will catch up with you because you’re also aging as you’re skating. Therefore a commitment to general health and wellness is your best underlying defense.

It’s not your fault, so cut yourself a break.  You can’t control your genetic makeup or the environments your parents or loved ones placed you in growing up. The only thing you can control at this point is your lifestyle choices. Therefore when it comes to any chronic condition, the famous adage, “Genetics loads the gun but environment pulls the trigger,” is accurate but perhaps lacking the third element…

“When it comes to health although genetics loads the gun and your environment pulls the trigger, I believe that lifestyle keeps the safety on.” 

Embrace a general, anti-inflammatory lifestyle.  Many medical professionals believe that all diseases start with inflammation. So rather than jumping into strict gluten-free, paleo, raw, vegan, or keto diets, keep it simple and start by committing to a general anti-inflammatory diet that will decrease internal irritation. Dr. Andrew Weil offers a great diet, to begin with.

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Move as much as possible. Because MS can negatively affect your gait, balance, and mobility, for as long as you can, move, move, move! If I could go back in time, I’d take a daily walk no matter the weather, weekly hikes, and basically choose walking instead of driving as often as possible, just because I could.

Find the best way to release stress. For some, that means yoga and meditation. For others, it involves kickboxing or banging out frustrations on a drum set. Others require a creative outlet to clear their mind and feel sane. Figure out what you need and do it often.

Give yourself time to slowly grow and change. Begin by eating more vegetables in general before you decide to only eat raw foods and throw out your microwave.  The same with supplements, organic foods, and healthcare. In a perfect world, I would only eat organic, but if I did that, I wouldn’t be able to afford co-pays to see certain providers, buy the excellent walking stick I love from Canada, or try out the $200 foot-drop brace I found online.

Be a curious scientist about your health, not a judgmental inner critic. Keep a journal and take “data,” focusing on one change at a time. Start by noting how you feel physically, mentally, and emotionally when trying something new or different.  Changes take time to affect the body, so give your body time to adjust before trying something else and clouding the data.

Remember, this is a marathon, not a sprint. Non-runners need at least 4 months to go from their couch to the finish line. Being newly diagnosed with a chronic condition (that you’ll have your entire life) is like training to run yearly marathons. You’ll need to run regularly while figuring out the best way to eat, hydrate, stretch, rest, and rehabilitate any injuries while responding to other illnesses, stress, and age-related changes. Twenty-year-old runners are different from 63-year-old runners. Disease processes across one’s lifespan require just as much adaptation and ingenuity.

Don’t go overboard trying out alternative therapies. In retrospect, I wish I would’ve spent 75% of my time focused on basic, traditional approaches to wellness and 25% of my time exploring alternative suggestions. It would’ve created a better foundation to support alternative therapy today and saved me a lot of time, energy, and money.

Find the right healthcare professionals. Doctors and therapists are supposed to tell you the truth but sometimes their delivery and word choice plant a negative seed that can grow wild weeds in your head.

Personally, I hope for the best yet plan for the worst. It’s easier to do that when professionals are as curious and optimistic as I am. I find someone else if I leave their office feeling discouraged and deflated. Medicine doesn’t know what causes or cures MS, so it’s pretty arrogant to think it knows exactly what will or won’t work for me. I’m happy to embrace a balanced approach to health as long as they can encourage me and my ideas. They know medicine, but I know myself.

Be gentle and compassionate with yourself as you figure this all out. It’s taken me a decade to find the right professionals that I see as needed (Sarah Jamieson, Tania Danner, Hannah Vo-Dinh, Virginia Harte, Aaron Exum, and Dr. Deb Morrone), yoga (meditation, pranayama, and gentle, prop-heavy, trauma-informed classes that increase capacity), equipment (Step Smart brace, active hands, Theragun, and a frequency-specific microcurrent machine) western medicine (Ocrevus infusions and neuron-kinetic therapy), exercise (elliptical and rowing machines), alternative therapies (red light therapy and percussive therapy), nutrition (WW Purple program), stress release (writing and talking with friends with chronic conditions) and cutting edge information (autonomic nervous system work, neuro-movement therapy).

I’m still trying to figure out how much to do and how often to do it. I’ve learned what I need, understanding that it’ll change, and I’ll have to tweak everything again (so there’s no sense getting worked up about doing the necessary work). In other words, just shut up and do it!

Everyone has a cross to bear. Life throws everyone a curveball or two (or ten). Some have money and marriage problems. Others have health issues, addiction, or mental illness. Some live in cults, suffer from abuse, get bounced around the foster care system, or are homeless. People are incarcerated for crimes they didn’t commit or fall victim to institutionalized racism. Many are disowned by their families, while others are downright suffocated by theirs. The cross on my back happens to be a health one, but it’s no heavier or lighter than the burdens that others carry around each day.

Lastly, you’re allowed to grieve the loss of your health. I was once told that surrender means simply grieving the loss of something. Thus before I could surrender to the process of re-creating my health, I would first need to mourn the loss of the healthy life I had expected to enjoy. That doesn’t mean giving up as much as it is about letting go of whatever I had imagined. I often wonder what would’ve happened had I simply taken the time to lament my diagnosis instead of jumping straight into “let’s fix this” mode?

Bottom Line:  Don’t try to cure yourself of a disease that the smartest neuroscientists can’t figure out. Don’t put pressure on a sick body to heal itself without the help of modern medicine. Feel free to use eastern and western approaches to your medical care but don’t demonize doctors and drugs. A yoga practitioner or a naturopath didn’t diagnose you. A medical doctor using a high-tech MRI machine did, so don’t rule them out when figuring out your long-term medical options.

Be positive and give yourself one full year to live as healthy as possible as a newly diagnosed, unhealthy person.

Once you figure out what works, never stop doing the work required. (And if you ever want to talk, feel free to call me.)

This post was edited for clarification on August 7, 2018, March 3, 2020, and again on June 29, 2022.

2 Comments Add yours

  1. Gerard says:

    Dear Linda,
    I discovered your site through a generic search on “diet and MS” in connection with a Shiatsu Diploma assessment paper I am currently doing.
    Without being patronizing or “soppy”, may I just say how much your writing speaks of tenacity, courage , intelligence and humour? The account of your persistent questing is both exemplary and very moving. You are an inspiration to all cross-carriers, everywhere.

    In respect of grief and grieving, have you ever checked out the Grief Recovery Institute? They have identified more than forty other causes of grief besides end of life.

    The Northern Irish expression, “Keep ‘er lit”, is an exhortation to continue your quest and I send you Reiki energy and every good wish for that worthy outcome.
    With Universal Loving-kindness
    Gerard Muldoon
    Belfast
    Northern Ireland

    Like

    1. LindaBP says:

      Thank you so much for your kind words and a wonderful resource that I look forward to checking out. I will try to “Keep ‘er lit” or as we say in America, “Keep on keeping on”. 🙂 You do the same.
      Fondly,
      Linda

      Like

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