Tag: fatigue

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

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

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, 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