Tag: chronic illness

chronic illness, MS

Lego Habits for Healing

Amanda, walkamyelinmyshoes

Not gonna lie, I feel like shit.

Headache, nausea, fatigue like someone Dyson’d out my energy, body aching like I’ve been attacked with a meat tenderizer. It’s my own Hundred Year Flu.

Okay. It’s only been a few months. The winter months, which seems to be my pattern.

The slow decline of energy in November. The push through December, distracted by my favourite holiday. The anticipation of a new year keeping hope alive, with a few good days thrown in to trick me. And then… February.

It would be easy to feel defeated. That even after all my hard work, and careful, deliberate living, I’m back in the same place. 

Except it’s not the same, just similar. 

When I think back to my first few years after diagnosis, vertigo making it hard to walk, ears ringing constantly, my brain doing acrobatics that felt like my skull was doing the wave, eyeballs swirling, swallowed by depression and anxiety, the electric shocks, the list goes on.

Now I just feel like shit. It’s an improvement. And that gives me hope.

This is when all the work I’ve done building healing habits: mindset, nervous system regulation, sleep hygiene, nutrition and movement, keeps me afloat.

Habits are like Lego pieces

Some of my favourite memories with my son are working together to build the increasingly complex Lego kits over the years. Step by step, piece by piece, we created most of the Star Wars kits available at the time. The look on his face and the sense of accomplishment as he placed the final piece still warms my mother’s heart.

Healing is not a kit, there is no final piece. It’s an ongoing process that never ends until you take your last breath. That’s true for all humans, not just those dealing with chronic illness. 

But every piece you add to your routine builds the structure of your healing journey. You have to go slowly, to make sure that piece is secure before you add a new piece. But, unlike a Lego kit, it doesn’t matter what order you add the pieces, just that you do.

Mindset is the Instruction Manual

The reason I’ve been focussing on mindset, inner dialogue and self-compassion in my Blog 2.0 posts, is that it’s really the equivalent of the Lego manual.

Yes, you can add pieces in whichever order works best for you. But if you’re telling yourself, ‘Well, I’ll try it but I don’t believe it will work’, or your deep belief is ‘they said it’s incurable so why bother’, or when you get off track your inner voice says ‘you’re useless, I knew you couldn’t do it’, then you’re essentially taking away pieces faster than you can add them.

Mindset is the manual and the foundation. So if you’re whirling in the confusion of information overload, start with building a positive mindset. It can be as simple as mindful breathing. Or saying ‘good morning beautiful’ into the mirror every morning.

Healing is possible. Your habits will get you there.

❤️ Amanda

Coffee and contemplation every morning, one of my favourite habits

chronic illness, healing, Health, mental health, MS

The 6 Words That Became My Prison

Amanda, walkamyelinmyshoes

‘I’ll never be the same again.’ I said those six words three weeks after my MS diagnosis, not knowing I was building a prison.

The moment I first said those words, I was trying to feel excited about all the growth in my garden. Instead, I was terrified and overwhelmed with all the work that growth was making for me. 

My body felt like I’d been squeezed through a pasta maker and dragged behind a pickup. I couldn’t find the energetic, motivated person I’d always thought myself to be. (I’d actually always struggled with fatigue but I had a close personal relationship with Denial.)

I repeated variations of that sentence daily for 3 years, swirling in the fog of confusion and grief a life-changing diagnosis brings.

Saying ‘I have MS’ is just a fact. But it’s the way I said it, with defeat, with finality, like it was my entire identity. That’s what kept me stuck. There’s a difference between ‘I have MS’ and ‘I AM sick.’


Your brain builds neural pathways like garden paths. The thoughts you repeat are the ones you “walk” most often. Over time, those paths become smooth and automatic. For better or for worse.

Because your brain’s job is to keep you safe, it takes your repeated thoughts as truth, so whatever you tell it often enough, it starts to believe and look for proof.

When you start choosing new, healing thoughts, you’re simply walking a new path. With practice, your brain learns to follow it naturally.

One morning I woke up thinking ‘I don’t think I can get out of bed today.’ So I didn’t. I spent 14 hours scrolling my iPad, feeling like a burden, spiraling into anxiety about the future. The next morning, before my brain could start its doom loop, I thought ‘What’s one small thing I can do?’ I watered the plants. That was it. But I wasn’t in bed all day.

When I worried that people thought I was faking because I could walk, or that I wasn’t ‘sick enough’ to be on disability, the vertigo would kick in and my ears would ring. Not exactly at that moment, it took some reflection to realize the connection, but the symptoms weren’t just random examples of my body betraying me. It was a self-fulfilling prophecy in action.

Staring at my garden one day, trying to squash the overwhelm at the weeding and pruning calling to me through the fatigue, I watched the hummingbirds flit from one buddleia to another. I envied their boundless energy and wished I could breathe it in.

Then I wondered what it would be like to be an animal and not have the overthinking, negative-biased human brain. That flipped the switch, and I thought, “What if I shift my perspective?” 

Adjusting the lens of how I looked at things, from “I’m so sick and tired of being sick and tired” to “What can I do to help myself heal?” was the game-changing move that stopped the carousel of terror and started a true healing path.

These days, when I catch myself thinking ‘I’ll never…’, I pause. Sometimes I can shift it immediately: ‘Not never. Just not today.’ Sometimes I can’t, and that’s okay too.

That garden I was standing in when I first said those six words? I learned to tend it in a different way. Some days with energy, some days from a chair, sometimes just watching the hummingbirds from the window. But I was no longer terrified of the growth, because I was part of it.

The prison was never MS. It was the story I told myself about MS. And I’m the one who holds the key.

What six words have you been saying to yourself? Write them down. Just notice them. That’s where the door starts to open.

❤️Amanda

What path are you creating with your thoughts?
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MS

How I Stopped Being Mean to Myself (And Why It Healed My Body)

Amanda, walkamyelinmyshoes

I was walking downtown with my family one day, carrying a pretty wooden box I’d found at the thrift store, when my right leg turned into cooked spaghetti and I face-planted on the sidewalk. 

My kids were young, and I guess it looked pretty goofy, or they were embarrassed, because they laughed. So I did too, as I picked myself up, examined the box for damage, and carried on. On the outside, a moment of oops.

In my head, I was Cruella de Vil, ready to skin myself for being so stupid. More concerned about my kids not being scared about their mother wiping out, and the state of the damn box than I was about myself.

That moment, laughing it off while mentally shredding myself, was standard operating procedure. I was really mean to myself. Like the stereotypical mean girl, berating and insulting myself. Like that would snap the MS out of me.

When my body was screaming for a rest, I’d call myself ‘lazy’ and keep pushing through. Then collapse for two weeks.

When I’d drop something, or my leg would pretzel and I’d fall, I’d get angry and call myself ‘stupid’ or ‘useless’.

I finally read something that asked: Would you talk to your best friend that way? Your child? Your pet?

The next time I fell, I tried it. Instead of ‘You stupid idiot,’ I attempted ‘That was graceful.’ Because, you know, humour. It felt ridiculous. Like lying to myself. But I kept trying. And slowly, so slowly, something shifted.

I realized that I deserve the same loving consideration and understanding I give to others. You do too.

Habitual negative thought ➡️ Supportive new thought

  • You’re lazy. ➡️ You deserve to rest.
  • Idiot. ➡️ Careful there, futterbingers. (Butterfingers)                                                                                                          
  • I’m so sick of being sick. ➡️ Healing takes time.
  • I can’t do anything anymore. ➡️ What’s one small thing I can do today?
  • People think I’m faking. ➡️ What other people think is none of my business. 

These are just a few examples. Pay attention to when you’re being hard on yourself, and change any negative criticism to an encouraging positive statement. Your inner critic needs to take a backseat. Preferably in another car going the other direction… or off a cliff. Because here’s what I’ve learned…

When I stopped punishing my adult self and spoke to my 5 year old self instead, my body started feeling safe enough to heal. The alarming symptoms she was sending to get my attention lessened the nicer I was to myself.

That scared, hurting little girl didn’t need a drill sergeant. She needed someone to tell her she was doing her best. That she was brave. That she deserved rest and kindness and patience.

She still does. So do you.

That pretty box? I keep it beside my bed to hold my daily gratitude post-it notes. It’s a little banged up but still functional and beautiful. Sort of like me.

Healing is not a straight line, it’s more like bumper cars. You’ll crash, back up, crash again, but you’re still moving forward. Day by day, with patience and consistency, it adds up and you will see progress.

What’s the nasty thing you catch yourself saying? What’s a simple reframe? Let me know in the comments.

❤️ Amanda

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Be kind to yourself

chronic illness, healing, MS

Finding Hope in MS: 2 Healing Tips

Amanda, walkamyelinmyshoes

Remember that feeling when you first heard ‘MS’? Like someone just handed you a puzzle with no picture, half the pieces missing and said ‘good luck!’

The overwhelm is real. Medication, or not? Can I still work? How do I tell people? Will I end up in a wheelchair? And on and on. The carousel of terror you never signed up for.

 My 23 year diagnostic odyssey ended with a neurologist saying, “Based on your MRI and history, you have MS. Take these (handing me a 10 pound stack of pharmaceutical information) and pick one.” That was the first time I understood the impulse to throat punch someone.

Here’s what I wish someone had whispered in my ear during those early, scary days. “MS isn’t the end of your story, and it’s not your identity.”

Here are 2 simple things that brought me back from the edge. Healing isn’t easy, but it is simple.

2 Game-Changing Tips

Tip #1: Why I Talk to Trees Now

In the early days, when it was hard to even get out of bed, the thought of going outside was as appealing as a quick hike up Mount Everest.

Eventually I dragged my butt out the back door and sat in a chair, staring at the garden. It felt like punishment. At first.

Watching the birds fly overhead, the leaves dance in the breeze and the flowers slowly open their faces to the sun, woke something up in me. Something that became a major ingredient in my healing journey.

The more time I spent outside, the better I felt. Something about just being there started restoring my energy.

Barefoot in the grass or on a beach, sitting under trees. On cold, rainy days, even staring at houseplants.

Sometimes sitting in my car at the beach or a park with the window open.

When all else failed, on ‘bed days’, I’d search “nature meditation“ on YouTube. Tim Janis is a great channel and doesn’t get interrupted by ads.

Trees don’t judge if you cry at them. Trust me, I’ve tested this. Those tree huggers are on to something. I wrap my arms around a tree and whisper my thoughts. Call me crazy, but the tree whispers back. And my nervous system downshifts and relaxes.

Actionable step: Aim for 5 minutes outside daily.

First thing in the morning is best and will improve your sleep. More time is obviously better, but doing it daily is the most important.

Start small so you can achieve it every single day. That’s how you make progress.

Tip #2: The Vertigo Solution I Didn’t Believe Would Work

Stress is the mortal enemy of MS. Living with MS is very stressful. It’s a vicious cycle.

MS stress amplifies everything. Things that wouldn’t have bothered you before, pluck those stress strings and have you vibrating (literally) with unwelcome negative energy.

How do you take back control? You pay attention to a process your body does automatically, adjust it and use it to your advantage.

In my last post, I talked about baby belly breathing. You’re born with the ability to breathe deeply and oxygenate your body properly. As you grow and get exposed to the inevitable stress of being human, you lose that ability.

Early on, I struggled a lot with vertigo and light-headedness. It’s like living in a fun house, minus the fun. When I learned to breathe properly and added specific breathing techniques, the vertigo loosened its hold over time and I stepped out of the fun house.

Actionable step: 4-7-8 breathing

  • One hand on your belly
  • Inhale through your nose for 4 counts, feel your belly expand
  • Hold for 7 counts
  • Exhale through your nose for 8 counts
  • Repeat for 3-5 rounds

Healing is possible

This is just the beginning of your journey. I know you want to feel better right now. Find that well of patience inside, practice consistently and be kind and compassionate with yourself. I promise you will start to see results.

Last week, I was hugging a tree in the park, releasing some difficult emotions. A woman walked by and winked at me. I walked past her a few minutes later, now she was hugging a tree with a huge smile on her face. What once felt a bit silly, now feels like wisdom.

What’s one small thing you’ll try this week? Let me know in the comments.

You’re not alone.

❤️ Amanda

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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

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