chronic illness, life, mental health

Milestones and Reflections

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. Not to mention that my husband and his mother also went to the same school!

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 in our family 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.

So it’s the end of June and the beginning of summer vacation. The garden’s in great shape, the kids all have exciting plans for the summer, and we have lots of camping planned in our new tent trailer. It’s going to be a great summer!

❤️ Amanda

chronic illness, MS

Not all hugs are loving: MS awareness

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. I’ve also been living through a bathroom renovation which has been more stressful than I anticipated. Yeah, I’m a dumb ass. No actually, it would have been less stressful if I had managed the job myself. Okay, yes I’m a control freak and a perfectionist. But if you want something done right, you might as well do it yourself.

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

As an aspiring author, 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

awards, nominations, challenges, chronic illness, Health, life, MS, writing

50 Word Thursday #3: Relapse

I’m trying something different this week, in an effort to kickstart my fiction brain. I’m joining the 50 Word Thursday challenge hosted by Tales From the Mind of Kristian and Teresa at The Haunted Wordsmith. Thanks to both of you for hosting this, it was a great simple challenge to stretch my writing muscles. If you haven’t checked out their blogs, head on over for some great stories and writing challenges.

The rules
1) Completed piece must be in multiples of 50 words – maximum of 250 words. Anything is acceptable – poetry, story, anecdote.
2) There will be a photo and a random phrase that I will take from the current book I am reading – you can use either or both
3) Please pingback and tag 50 word Thursday, so I can do a summary on the Thursday morning. You can either put your piece in the comments on this post or do a post of your own.

‘Although it was a simple thing to be doing, something strange was happening.’

– Paulo Coelho – The Valkyries

Relapse

She stepped into the dark alley for a minute, leaning against the cool shade of the building. She closed her swirling eyes and exhaled heavily, then inhaled a slow, shaky breath. Her legs sagged then collapsed under her, the high-pitched screaming making her moan and stuff her fingers in her ears. Dropping her head on her chest, she squeezed her eyes shut to hold back the tears as the nausea roiled in her empty stomach. The vibrations started from deep within, travelling up her spine then out into her limbs until her teeth chattered. How would she get home?

100 words

❤️ Amanda

Book recommendations, chronic illness, mental health

Depressed? Read this book!

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