Category: chronic illness

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.

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

chronic illness, MS

Not all hugs are loving: MS awareness

Amanda, walkamyelinmyshoes

It starts with a stitch

A few deep breaths

Then you’re knitting my ribs together

With barbed wool

The front

Then the back

Swirling into my abs

Then my lower back

A corset of pain

The cat the cow

The cat the cow

Stretching every way for relief

Breathe

Distract

It’s just a physical thing

I hug myself hard

To try to get you to let go

Nothing helps

Just breathe

I’m writing this as I’m experiencing a common MS symptom, known as the ‘MS hug”. I’ve always been a hugger but this is not the kind of hug anybody wants to experience. When people refer to multiple sclerosis as a MonSter, it’s for good reason. It sneaks up and attacks when you’re at your weakest. I’ve been fighting the cold from hell, downgraded from the flu thanks to the infrared sauna.

So – stress. The worst enemy of anybody with a chronic illness. Hence, the MS hug and an increase of all the other symptoms that make me feel like Beetlejuice in that electrified way, minus the energy.

Good times.

Just breathe.

❤️ Amanda

Book recommendations, chronic illness, reading

Book Review: Cull by Tanvir Bush

Amanda, walkamyelinmyshoes

I’m always on the lookout for new authors that inspire me. This book appeared in my Bookbub offerings in February, and I was immediately interested, for obvious reasons. The title and the cover speak volumes. (see pic below)

It’s disturbing to hear so many stories about disabled people being further victimized by the attitudes and prejudices of the healthy. When the government jumps on board to legislate discrimination in the guise of rooting out the lazy, lying abusers of the system, the results are truly frightening.

Are there people that abuse the welfare system? Absolutely. Should all people who are already dealing with the challenges of chronic disability live in fear that they will be accused of ‘milking the system’? I won’t answer that, but we know that it happens all too often.

When I first had to give up teaching and go on disability, one person said how lucky I was and that I should go surfing. Um…okay? It’s ignorance, a blissful ignorance of not knowing what it feels like when your body betrays you and all the things you have taken for granted, are taken away. I wish everyone such ignorance.

For those living that reality, further victimization through government policies is very much part of the whole journey. I am fortunate in Canada to have been supported through the process but I hear horror stories from people in the States and the UK about fighting for benefits and not having enough money or proper insurance to afford medication or adequate healthcare.

We know the effects of stress on the human body, and on chronic illness in particular. I can’t imagine living in that kind of fear day in and day out. Tanvir Bush has taken this situation, and in a brilliant satire, given the power back to ‘the crips’. Her protagonist is blind, as is she, and she has the most amazing guide dog, Chris.

Her writing is exceptional, the way she describes the world from the dog’s point of view is brilliant, and overall this book highlights so many important facets of a world that is disturbingly similar to ours. You want to read this book! Amazon links below.

⭐️⭐️⭐️⭐️⭐️

Website for Tanvir Bush and The Holey Vision Blog

Amazon.ca

Amazon.com

Amazon.co.uk

Amazon.com.au

❤️ Amanda

Book recommendations, chronic illness, mental health

Depressed? Read this book!

Amanda, walkamyelinmyshoes

Not much to report here, except that the gnomes and ogres are still having their dance party. I’ve just tried to stay busy doing jobs around the house when the energy permits, getting outside every day, reading a ton and binge-watching Outlander in anticipation of season 4 coming out on Netflix.

I started reading a book I started in the summer, and I had to share it. If you need some perspective, and some good laughs, I highly recommend Furiously Happy by Jenny Lawson. She is also known as The Bloggess and has a thing about taxidermy, as well as an interesting perspective of the world from living with mental illness her whole life.

With chapter titles like “Koalas are Full of Chlamydia” and “Voodoo Vagina”, this is not a self-help book. Yet somehow, it’s very helpful in its own bizarre way. Here are some nuggets from the sections I’ve been reading:

“My psychiatrist told me that when things get rough I should consider my battle with mental illness as if I were “exorcising a demon” and I was like, “Well, no wonder I’m failing so miserably. I’m shit at exercising.”

“Like my grandmother always said, “Your opinions are valid and important. Unless it’s some stupid bullshit you’re being shitty about, in which case you can go fuck yourself.”

“Did you know that kangaroos have three vaginas? Because they totally do and that’s probably why they’re always hitting each other. They probably have PMS every damn day of the week. But on the plus side, kangaroos have plenty of places to smuggle things, with so many holes in their bodies. In fact, they’re so full of holes it’s sort of shocking that all the kangaroo doesn’t just leak out.”

Okay, so she’s random. Maybe that’s what I’m responding to, along with her complete honesty about living with mental illness. I have tremendous empathy for people who live with mental illness throughout their lives. This is new for me, depression was not something I had experienced until two years ago, and so far it has come and gone within several weeks – fingers crossed this time. Living with this feeling day in and day out over years, takes a special kind of fortitude.

It is only in sharing our experiences and being honest that we will break the stigma of mental illness. It is the most rampant of all the invisible illnesses, and it’s time that it was taken as seriously as physical ailments. There should be no shame in admitting that you’re struggling, and it’s important to reach out and ask for help if you’re not coping. You are not alone.

Do you have any books about depression, anxiety or other mental illness that you recommend? I’d love any suggestions in the comments. Links for the book below for your convenience.

Have a wonderful week!

❤️ Amanda

Jenny Lawson

Furiously Happy: A Funny Book about Horrible Things

Amazon.ca: Furiously Happy

Amazon.com: Furiously Happy

Amazon.co.uk: Furiously Happy