Category: MS

chronic illness, mental health, MS

Big feelings after MS diagnosis: What I’ve learned in the decade since

Amanda, walkamyelinmyshoes

First, relief. An answer to the strange symptoms that quickly consumed my life. See, I’m not making it up. It’s not all in my head. Except, uh, it was.

In no time, relief morphed into terror at the possibility of a very bleak future.

Three days after diagnosis, I found myself in the grocery store, choking on sobs as I reached for the Honey Nut Cheerios. How to make friends and influence people.

Everything felt impossible. Like I was walking through mud. Breathing took all my energy. My brain was on strike. The neurologist handed me a two foot tall stack of pharmaceutical pamphlets textbooks and said, “Pick one.” Not. Helpful.

I was on my own. So I figured it out. S-l-o-w-l-y. Let me help you get there faster.

My Post-Diagnosis Survival Kit (also handy for general life, especially these days)

1) First lifeline: Stepping outside for 5 minutes, and staring at the sky.

There’s something about the wide expanse of the sky that calms the swirling thoughts and grounds you in the reality that the planet’s still orbiting the sun and life keeps moving forward. 

Even when it feels like your life has crashed down around you.

2) Game-changer discovery: A simple breath technique that works. Baby belly breathing and extended exhales.

First let out a big exhale. This tells your body you’re not in imminent danger and immediately calms down the nervous system.

One hand on your belly. Inhale through your nose for 4 counts, feeling your belly expand.

Exhale through your nose or mouth for 6 counts, feeling your belly deflate.

Five minutes of deep belly breathing and your thoughts stop swirling. Your body shifts into a lower gear.

3) Five minute rule: This became my rule for healing that changed everything. You can do anything for 5 minutes, even on the hardest days. Walking, cleaning, cooking, crying… anything.

Once you prove it to yourself through consistency, it automatically makes you want to do more. That’s how change happens.

Small Shifts, Big Changes

Healing isn’t about giant leaps. And you can’t just heal your physical body. It’s an ‘all hands on deck’ situation of body, mind and spirit. It requires patience, self-compassion and consistency.

But healing is possible. Even if MS is incurable.

The mindset shift: From fixing everything to just doing one tiny thing.

Some days you have to congratulate yourself for moving from the bed to the couch. Or brushing your teeth. Or choosing an apple instead of the cheesies calling your name.

It all counts, and it adds up. 

What I’d Tell My Newly-Diagnosed Self

Your overwhelm is temporary.

You don’t need to figure it all out today.

MS doesn’t get to write your whole story.

You’re already braver than you know.

Your One Next Step

Three micro-actions:

  – Step outside for 5 minutes

  – Try five baby belly breaths, in for 4, out for 6

  – Say one kind thing to yourself

Start with just one.

Remember: You’re not alone in this.

I see you. You got this!

❤️ Amanda

Get Your free MS mindset reset Guide
chronic illness, gratitude, Health, life, mental health, MS

From Chaos to Calm: Your 3-Minute Reset After MS Diagnosis (or anytime)

Amanda, walkamyelinmyshoes

Everything just changed. Your mind is spinning.

You want relief. You want answers. You want to feel better now.

After the relief of finally getting my diagnosis, an answer to my 23-year medical mystery tour, the overwhelm took over. My first neurologist handed me the stack of medication information and told me to pick one. Yeah, I fired him.

I didn’t know where to start. So I did what most of us do. I looked for answers everywhere else.

There’s so much information out there. Diets. Protocols. Supplements. Exercise routines. Many people claim to have the one “best” way to handle your life-changing diagnosis.

But here’s what I learned. You’re the only one who can decide what your healing journey looks like. And when you’re caught in a storm of information and emotion, you can’t hear your own wisdom. You need to find ground first.

MS can make you feel powerless. But creating calm, even for three minutes, is something you can do right now.

Here’s your reset:

Set a 3-minute timer.

Place one hand on your heart, the other on your belly.

Take slow breaths into your belly, the way a baby breathes. The way humans breathe naturally before stress teaches us to hold our breath in our chest.

Close your eyes or look at the sky.

Notice one thing you’re grateful for or hopeful about.

That’s it. Do this once today. Nothing more.

This isn’t about fixing everything. It’s about giving your nervous system permission to settle. Because healing can’t happen in chaos.

Do you have a quick reset to share? Let me know in the comments.

I see you. You’ve got this.

❤️ Amanda

Mindset shift: Chaos to calm.
Take 3 minutes to breathe and stare at the sky.
Get Your free MS mindset reset Guide

chronic illness, Health, life, mental health, MS

Exercise, the DIY DMT

Amanda, walkamyelinmyshoes

It’s been a long six and a half years since my MS diagnosis, seven since the relapse that made teaching impossible, but I’ve healed more than I thought possible back in 2015.

I attribute my healing to various things, namely a healthy, stress-free lifestyle, low-dose Naltrexone (LDN), a healthy, mostly vegan diet, circadian fasting (more on that later), time in nature and in my garden, and a great dose of luck that this monster isn’t as aggressive for me as it is for some people.

The biggest factor in the last year though, has been exercise. I thought they were lying. When you barely have enough energy to breathe, how can you possibly exercise? Or, when you do have the energy, you go as hard as the ‘old you’ could manage, then end up in bed for days, useless as braces on a duck.

Much nicer with no braces.
Photo by Skyler Ewing on Pexels.com

So I decided I needed to be methodical about it, and make a commitment to myself to spend half an hour a day using it before I lose it. Never mind MS, age starts gnawing away at the natural strength you used to take for granted and it’s a slippery slope. If I can binge watch Survivor at the end of the day, surely I can carve out half an hour for exercise.

Remember the movie About A Boy? Hugh Grant’s character was a rich layabout who organized his days in thirty minute increments. It became wisdom to me when I was first on disability, and now at least one of those thirty minute chunks is devoted to exercise.

If the weather permits, my exercise is walking outside because it also checks off another important part of my morning routine which is at least 30 minutes of sunlight (or a reasonable facsimile thereof-gray skies are still beautiful). I’m all about efficiency!

Otherwise, I either ride the recumbent bike or do yoga or pilates on YouTube. There are some amazing channels out there, I’ll link a few favourites at the bottom. The trick is, pick the beginner videos. You have nothing to prove except a commitment to consistency.

I know, I know, you used to be able to handle intermediate or advanced, but remember the braces on a duck? While incongruous, it speaks nothing to the true pain you can cause yourself by trying to do too much too fast. Maybe we should picture a tortoise with a headband instead. Since I’ve been limiting myself to gentle but CONSISTENT exercise, I have finally been able to maintain an exercise routine and start to see and feel the benefits.

the tortoise→ MS Warrior

the hand → MS

The tortoise might be caught but he never stops moving!

My newer, all-time favourite paid exercise program, that I do two or three times a week because it always leaves me with a smile on my face, is BodyGroove. With catch phrases like “you can’t do it wrong” and “do whatever feels good for your body”, they have turned exercise into a fun way to connect with your body and dance like it’s 1988.

For each song, they introduce three different rhythms that are simple enough for you to interpret however you want but sooo good for your cognitive health. Check out these articles for all the benefits dance provides.

https://www.news-medical.net/health/Is-Dancing-Good-for-the-Brain.aspx https://www.sciencedirect.com/science/article/abs/pii/S014976341830664X

I’m not affiliated in anyway, I just think it’s a great program for anyone chronically ill, as they have all sorts of people demonstrating and showing how much you can do even sitting down. You don’t need any experience but I grew up dancing in a fairly serious way so I love that I can reconnect with that previous iteration of myself, even on days when the MonSter makes my movements sluggish and difficult.

On my darkest days, stuck in my bed, I dance in my head like I used to as a child. With strength, freedom and passion. Now, even on my mediocre days, I can push myself to do it because “you can’t do it wrong”. You need to move your body, so why not groove your body?

It was my oft-mentioned, well-respected naturopath, Dr Pamela Hutchinson that gave me the idea for the title of this post. Dr Pam believes that exercise should be considered a DMT(disease-modifying therapy), and my neurologist agrees that exercise is the single most important thing you can do to fight MS.

They’re not lying. Move your body, but gently. If you can’t commit to half an hour, commit to five minutes and build up from there. The important thing is to get or keep moving so we don’t lose any more of the mobility and strength that we still have. Fight the fight. You got this!

Top 5 exercises for the chronic illness warrior

  1. Walk – in nature or at least outside
  2. Yoga – Jessica Richburg https://youtu.be/zA5oxYvIx0c – Yoga with Kassandra https://youtu.be/6hZIzMpHl-c – Yoga with Adrienne https://youtu.be/v7AYKMP6rOE
  3. Pilates – Move with Nicole https://youtu.be/NyP_waVgL1w
  4. Recumbent bike – with a nature meditation video https://youtu.be/tck7E11SdR8
  5. Body Groove https://www.bodygroove.com

Amanda ❤️

MS

Raw

Amanda, walkamyelinmyshoes

I need to know

Do other MSers feel it too?

A sudden rawness

Burning

Tingling

In the tongue

Lips

Palms of hands

Soles of feet

Eyelids

MS?

Is it the myelin being destroyed

By my own cells?

Most uncomfortable

Anxiety-inducing

Go away now.

chronic illness, life, MS

Some people – Practice kindness

Amanda, walkamyelinmyshoes

I had a really wonderful then upsetting experience yesterday. I was in the ‘accessible’ lineup at the grocery store – simply because it was the shortest line, I’m still totally mobile. I left my cart to get another item and when I came back the cashier had put up her ‘closed’ sign but said I was fine because I was there before she closed.

As she was checking me through, very attentively asking me about the weight of the bags, saying how she was always careful because you never knew if someone had had shoulder surgery or something and how would you know?

Wonderful awareness for invisible illness, which is rare, but in the meantime, an older (72-ish) gentleman in a motorized wheelchair was waiting at the end of the belt trying to get her attention. When I signaled her, he asked if she was closed for a single bag of chips. She explained that she had no choice, she had to close and not take any more customers.

The man was understandably shocked that as a visibly disabled person she couldn’t bend the rules to make his day just a tad easier. To be fair, she was a lovely young woman who was following the rules – too young to really understand the implications of rigid rule-following.

I offered to check the chips through on my account, had her scan them and passed them back to the man. He insisted that I take the money from his bag and seemed a bit offended when I offered to pay. Finally I begged him to let this be the nice thing I did for the day and he laughed and let it go.

Then he got stuck. In the accessible aisle.

I offered to maneuver the chair but he said it was too heavy. It just took time for him to figure it out with his fisted hand that he could hardly control as he was wedged between the two counters.

He looked up at me and said, “This is just what it is to have MS.”

After a gulp, I responded, “I have MS too. I’m not where you are but I get it.”

He looked at me with tears in his eyes, went back to un-wedging himself and when he was free said, “Thank you very much. I really appreciate it.”

A wonderful exchange. Simple human caring and courtesy.

As I finished checking out, I saw that the same gentleman was slowly making his way out of the grocery store. A woman about my age was behind him with her cart, maintaining a respectful distance as he tried to make his body makes its way out of the store.

Just as he was almost through, a man with a single item, again about my age (ie.not a teenager or early twenties, ie. SHOULD KNOW BETTER) came up behind and yelled, ‘BEEP! BEEP! BEEP!’

WTF? Are you kidding me??

The asshole is lucky I couldn’t catch up with him or he’d be needing an ice pack.