Category: life

life

Christmas: pressures and perspective

Amanda, walkamyelinmyshoes

So, I was ‘voluntold’ yesterday by my youngest that ‘we’ were providing the vegan gingerbread house kit for her and a friend for the class contest on Friday. Ummm… okay? 🤣

I love that she knows I love to bake so assumed I’d be happy to do it. Happier that it doesn’t occur to her that I’m carefully pacing myself at the moment so I can make it through the holidays without the MonSter rearing it’s ugly head too far. One of the perks of an invisible illness when it comes to your kids, at least when you can…

But it’s always smart to remind yourself, chronic illness or not, that it’s not worth pushing beyond your limits. Everyone owes it to themselves to take time for self-care, to take things off their plate when necessary and to ask for help sometimes.

The whole season should be about being cozy and spending low-key personal time with your people. Let go of the consumer, commercial side of it and focus on what matters. You can only do what you can do, and good enough is good enough. Otherwise, you…

The best thing I’ve started doing since I finally got decent running shoes is getting my butt out the door every weekday for a 20 minute walk. Sometimes it’s a few minutes more, but never too much because in the past I would get back into ballet or yoga and go too hard, setting myself back several steps. So now I’m the tortoise not the hare, and I find I look forward to my walk each day and it sets me up well for the day ahead. There are days when 20 minutes doesn’t get me too far…

But I’ve only missed one day, when the wind was too much for my sensory issues, and then the last couple of days when I needed to brave the crowds to finish the Christmas shopping. Now I will get out there every day if possible because I know it’s the single best thing I can do to make it through our busiest Christmas season ever, and enjoy it.

Finally, chronic illness or not…

Depending on how things go, I may post one more time about the vegan gingerbread house. If it’s a total fail, maybe not, so…

Wishing you all a restful, joyous holiday and a healthy, peaceful New Year.

❤️ Amanda

family, life

Mom fail

Amanda, walkamyelinmyshoes

I’ve literally been counting the minutes.

As much as I love the texts telling me how well things are going, and the fact that the bathroom stays MUCH cleaner, I have really, really missed my boy since I left him in Ontario for university.

So that wonderful creation called reading break has arrived, and all day I’ve been giggling and wheee-ing (not weeing!😉) to myself that I get to see him tonight.

His room is clean. I’ve bought his favourite groceries and left some treats on his bed.

So, all I had to do was wait in anticipation to pick him up from the airport at 11:16pm.

Around 5pm, I get all excited that he must be on the plane and on his way.

At 5:15pm, I get a text: “Where are you?”

😳🤯😱🤬🤪

Um, yeah. Nice welcome home. Poor kid had to cool his heels for 45 minutes until we got to the airport.

Note to self: Double check arrival/departure times ON THE DAY. This is not the first time something like this has happened. #brainfog

Good thing we all have a good sense of humour.

Now it’s time to enjoy having all my kids under one roof again. This is one happy Mama!!!

❤️ Amanda

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, 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.