Tag: Multiple sclerosis

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

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

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, 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.