Tag: reflection

life, mental health

Learning to Be

Amanda, walkamyelinmyshoes

The world has stopped. The unthinkable has happened and we’re in crisis mode, trying to get our heads around this ‘new normal’.

I’ve been here before.

No, not exactly like this, obviously. But almost five years ago, my world stopped when I finally admitted I couldn’t teach anymore. I’ve been adapting to my new normal ever since. It’s been a bumpy ride, but there have been many surprising blessings as well.

Learning to be. This is a big one. We are so inundated with messages telling us we need to be doing something all the time. There’s a culture of busy-ness, where the more you’re doing is like a badge of honour. When you have a chronic illness, that’s not really an option because the fatigue, among other things, is so killer that You. Just. Can’t.

So you spend a lot of time at home, sitting around, isolated, without a whole lot of options for entertainment. Sound familiar? I’m sure it’s a new experience for most healthy people, and it can be uncomfortable just sitting in your own skin sometimes. Or maybe that’s just the MS. 🤔

But just being, instead of always doing can be a wonderful opportunity to get real with yourself and figure out what’s really important. We’ve been conditioned to believe we need to be working, be productive, be entertained, be adventurous, be travelling , be consuming, be socializing.

We’ve forgotten that sometimes it’s important to just BE.

When you stop doing and sit quietly with yourself, your mind has space to process. This is why meditation has become so popular. But you don’t even have to be that organized about it. I’m not knocking meditation in any way, I’m just suggesting that you pay attention to whether you take any time during your day to stop doing and just BE.

Staring at nature is my go-to for times when I need to stop and be for awhile, even if it’s just out the window, or the nature channel on TV. I guess that’s technically doing something but the mental health benefits outweigh any slicing of that proverbial hair.

We’ve been running on the societal treadmill for so long that doing nothing, just BEING is a difficult thing for many people right now. I get it. Like with anything though, a shift in perspective can change this strange situation we’re finding ourselves in, into an opportunity to examine our values and decide if we really want to go back to the “old normal”.

As much as I miss teaching, I am grateful every single day for my many blessings. Learning to be comfortable with just being and not doing all the time has helped me enormously in accepting my new normal. I hope it helps you too.

Just be.

Hummingbird in flight feeding
Look what you can see when you stop doing for a few minutes. Just be.
Photo credit: Amanda L. Callin

❤️ 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.

life

Endings and beginnings

Amanda, walkamyelinmyshoes

He’s off. Settled. Installed at university – across the country.

I’m always a proud Mama, and never more so than when my son was accepted into one of the top universities in Canada. The fact that it’s four provinces (4029km/2504miles) away, is something I have been digesting, with a smile on my face, for months.

I’ve just returned from a four day trip to get him organized and set up in residence. It was one of the most wonderful, but more emotionally challenging experiences I’ve had in motherhood.

He’s doing exactly what he should be doing, moving into the next phase of his life with the skills, values and independence I’ve worked to instill in all my children.

But hugging him goodbye and having to leave him there, no matter that I know he’ll do great and be just fine, was almost as hard as when I had to leave him in the OR for surgery on his broken leg when he was six.

I sucked it up (mostly – poor Uber dude) until I hit my hotel room. It was only in writing out all the fantastic details of the day in my journal that I got a handle on the Snuffluffagus tears. Writing is therapy.

I flew out so early the next morning, I was hardly conscious. I was one of the last to board the plane, psyched to have an aisle seat near the front. The middle seat was empty and I thought I had it made, despite the huge manspreader in the window seat. (wtf is up with that???)

Then a young mother boarded with her 9 month old baby boy, and smiled at me apologetically. I jumped up to let them in, remembering well my many trips with young kids and the obvious looks of horror from fellow passengers, then realized the father was there too. I offered to move but they said he was in the middle seat at the back of the plane. Yeah – not happening.

I was happy to help her out and thrilled to hold the little monkey. He was such a happy guy, with a shock of blond hair, huge blue eyes and a ready smile.

Then a three year old boy walked up the aisle and spotted the baby. He stood and gazed at him with such fascination for ages, it was adorable.

Do you see the pattern here? Okay, Universe!!!

I didn’t let myself say the usual, ‘it goes by so fast’, ‘appreciate every moment, even the most frustrating ‘, ‘you never get this time back’.

I didn’t want to be that person.

It’s all true though, but you can’t really understand it until you live it. Like everything in life.

I lost it a bit a couple of times on the way home, but walking up to the house was really weird. He’s not just out, he’s away.

So sniffling away in my bedroom, I pulled out my phone, and there was a text from my boy.

I thought you should know, I had tomatoes for lunch.

😂😂😂 Thank god for technology.

And perspective – he’s only away at school, he hasn’t moved out! Home for a visit in two months!

This is not the end of anything, it’s the beginning of everything.

❤️ Amanda

chronic illness, life, Poetry

Voodoo Doll: MS Awareness

Amanda, walkamyelinmyshoes

Huge stakes pierce my heels

Burning red hot fire

Millions of minuscule knives

Flay the insides of my feet

A giant vegetable peeler slices off

The bottoms

*

I’m sorry to those I squashed

Those I looked down upon

From any temporary high ground

I believed I held

I am your voodoo doll

And you will have your revenge

Over and over

*

The burning piercing spreads

To hands, up legs, then forearms

Who needs to work on abs

When they stay contracted constantly

Holding in the moans

And the nausea from the pain?

*

I’m sorry to those I squashed

Those I looked down upon

From any temporary high ground

I believed I held

I am your voodoo doll

And you will have your revenge

Over and over

I don’t really believe that my chronic illness is a matter of revenge, but it’s an easy trap to fall into when I’m trying to pretend all is well but the pain is overwhelming. I think of myself as a kind person but I know in my past immature, insecure life I wasn’t always the best person I could be. However, we can only go forward and try to do better.

Kindness is the answer.

❤️ Amanda

chronic illness, life, mental health

Milestones and Reflections

Amanda, walkamyelinmyshoes

At the beginning of June, I celebrated the first year of my blog. It was a huge step for uber-private me last year but the response once I finally faced my fear and hit publish was unreal. I can’t believe I have over 500 followers. More importantly, I can’t believe the support I’ve received and the friends I’ve made in this wonderful community. I’m so grateful. Thank you all. 💕

On this day four years ago, I received my MS diagnosis in the morning before going back to school for the last afternoon with my class. I didn’t know it would be the last afternoon I would spend as a teacher at the time.

It’s been an interesting journey, to say the least. The physical symptoms, especially the fatigue, stopped me teaching but the mental gymnastics associated with being chronically ill really stopped me in my tracks.

Fear, grief, anxiety, depression, guilt. Oh, the guilt! Learning to say ‘I can’t’ – especially to my children, forcing myself to stop when I ‘should’ get a little more done, unable to enjoy the good days because I ‘should’ be working.

I’ve learned to mostly maintain perspective when the anxiety and depression hit because I know it’s temporary, no matter how black. The fear hits pretty strongly when my body does it’s weird party tricks. (numbness, tingling, burning, buzzing, dizziness, tinnitus, spasms, trembling, pain and the fatigue that courses through my veins. #msawareness)

But life is scary for everybody in one way or another. Perspective.

The guilt has been the nastiest of the negatives. It comes up over and over and I’ve struggled to gain the same perspective, especially on the good days. I’d love so much to be back in the classroom that when the uglies lessen a bit, I forget how bad they are and feel I should at least try to go back to work. When they inevitably reappear, I remember why I can’t do the job I love so much.

Four years on, I’m done with the guilt on my good days. I won’t compromise the health I’ve regained since I stopped working by forcing myself to go back to work. And I won’t waste the bonus time I do get feeling guilty anymore, dammit! So there, MS. 🤗 From now on, I’m doing ‘jazz hands’ any time the guilt creeps in – haha!

This day marks a milestone for each of our younger children as well. After knocking our socks off at her Variety Show on Monday singing ‘Defying Gravity’ – (check out my instagram or facebook for the video), our youngest is finishing her last day at elementary school. It’s truly the end of an era, as we started there an unbelievable 15 years ago when our eldest was in kindergarten.

Our son is finishing his last day of high school, heading across the country to study Economics at Western University in September. Needless to say, we are incredibly proud of his achievements so far and excited for him, but there will be a big hole that will take getting used to. It’s all as it should be and we can’t wait to see where he goes with his life. This kid is motivated!

Finally, our eldest got her first car so now we have our own taxi 😉 she’s embarking on a whole new level of independence and financial responsibility. We have no doubt she’ll manage her shiny new car with her usual attention and responsibility, and have lots of great adventures in the years to come.

❤️ Amanda