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

chronic illness, life, mental health, MS

Happy New Year: sponsored by gnomes, ogres and a wise ass

Here we are at the beginning of another year. 2018 was supposed to be a stellar year for me because of my birthday magic – I turned 48 on 8/8/18. Bought my 8 lottery tickets and everything but alas, no millions here. Overall, it was a great year, though.

I have so much to celebrate and be grateful for, the most important of all being the health, happiness and success of my three children. They continually boggle my mind with their kindness, insight and focus on developing their individual talents. Pride in one’s children is the best gift of all.

I took a Hiatus for the Holidays, hoping the creative genies would reappear but instead those nasty black gnomes of depression showed up again. Not until Boxing Day at least, so I enjoyed a wonderful Christmas with my family. But they showed up with a vengeance, planting their little fish hooks all over me and pulling me down into their abyss.

Depression is a vicious predator. It doesn’t just affect the person suffering but emanates throughout a household. You can ‘fake it til you make it’ as much as you wish but everyone feels the cloud. Then, of course, you can add depression’s nasty cousin, guilt, to the mix as well.

Even knowing intellectually that the depression is either hormonal (perimenopause is a freaking blast, isn’t it? If I tear up at one more stupid commercial…😭🙄) or MS-related, thereby completely out of my control, doesn’t alleviate the guilt.

However, brooding on either isn’t going to help anything. So, I’m allowing myself the space to feel whatever I’m going to feel and trying to keep to myself as much as possible, without being a total hermit. I do one thing a day to feel productive, and call it good.

Depression, grief, mental health

One day, one minute at a time


The black gnomes of depression

pierce me all over

Their fish hooks tug me down

Snarling and giggling gleefully

with the ogres of fatigue

Pulling from the depths

with their leaden anchors

They all swirl together toward

The dark pit in the centre

Nauseating boiling ice

Numbing everything

But despair and guilt

Waking me in the night

Marrying the pain

The soles of my feet peeled like carrots

The tops shrieking, spasming

The ankles stabbing

Praying for sleep

Praying for release

Praying for me


I’m still struggling but I’m thinking of the parable of the mule in the well that I read the other day. Hmmm…should I be worried that I’m relating to a jackass? 😜 This article from Patch does a much better job of telling it than I can right now.

Shake it off and step up : THE WISE OLD MULE – An Inspiring Parable That Can Improve Your Life!

Shake it off and step upThe Mule in the Well parable – Shake it off and step up


I hope 2019 has gotten off to great start for you. If not, take those small steps up out of the darkness every day. It may not feel like it, but things will get better if you keep fighting the fight.

I send you all my best wishes for a happy, healthy and pain-free new year.

❤️ Amanda

Other mental health posts I’ve written:

Not so sunshiny days- Depression and awareness

Anxiety : Depression’s partner-in-crime

Pain and anxiety