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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

chronic illness, life, mental health, MS, Quotes

Pain and anxiety

Amanda, walkamyelinmyshoes

I had another post scheduled for today, and then this happened…

My body has been happier for the last month or so than I remember it feeling for a few years now. My mom and I had a mostly wonderful outing to the theatre today(Saturday). We watched an incredible tribute to the phenomenal Leonard Cohen by Les Ballets Jazzs de Montreal.

Normally I print the tickets at home but for whatever reason I chose ‘pick up at box office’. We had to wait outside in the beautiful but freezing cold day (for Victoria standards – we’re wimps compared to most Canadians 😉), and by the time we got into the lobby, the MS monster was in full force.

Right or wrong, I resorted to a glass of wine which always calms the shakes and the nasty. Despite the plastic cup with a lid, I spilled all over my light purple pants. Nice. Of course, if I’d been wearing black it wouldn’t have happened. 🤣

Anyway, the following spilled out of me a few hours after I got home today. I wanted to share because I imagine it’s not an uncommon feeling. The pain’s bad enough but coupled with the anxiety of whether it’s signalling a relapse makes it almost unbearable.

I’m going to assume that when I wake in the morning, after this post is published, the monster will have retreated again and I will keep on keeping on. To all the warriors out there, I send you courage and positive vibes in the battle.

❤️ Amanda

The pain heaves my stomach and sparks my anxiety.

It’s like too much blood in my foot, pushing out against my skin.

The foot wants to fold in half too, a taco of toes.

I breathe out against the pain, hoping it’s that my shoes are too tight.

The pain gets worse lying in bed later, legs bare, unconstricted.

There’s a python in my leg, squeezing, squeezing until I can’t breathe.

I move the leg to dispel the pain but it follows me, hungry.

I reprimand the foot.

It’s the misfiring of neurons, it’s not really happening.

A futile attempt.

The pains roars louder.

I swallow the nausea, blink against the headache.

The pain runs up and down my leg, into my arm, my jaw, my shoulder, my back.

It’s everywhere.

Controlling my body and my mind, I’m lost in the misery.

Then the anxiety yells above the pain.

Is it happening?

Will I be down for the count?

Is it going to take me out for good this time?

I want to cry.

I want to hide.

I want out of this body.

I feel the grimace on my face and try to correct it with a smile.

A smile marinated in pain, a crone’s smile.

My face slackens, my mouth sliding down my chin.

The foot is sharing, pain travelling up my leg into my hip socket.

A live wire sizzling its anger from the inside.

My eyes squint, I swallow the lump of tears, blink away the moisture.

Crying won’t help, it makes the headache worse.

Lie still, lie still, breathe it away.

Shoulders tense, jaw clenched, abs contracted to hold it down.

Now the python’s in my arms too, too much blood in my whole body.

A burning tingle numbing my body and mounting my panic.

It circles my ribs.

They click together, compress my lungs.

I take a long, slow breath but my lungs won’t fill.

My tongue tingles.

I swallow the nausea again, the bile crawling up my throat.

The wrinkles deepen on my face, crevasses of pain.

The pain shoots down to my big toe, throbbing its nasty foulness.

The python circles my throat and I choke on my saliva, coughing and sputtering.

I hold my neck, coaxing the muscles to relax, the python to release its grip.

The panic screams but I have no time for that right now.

I need to breathe, to relax my body before I turn to stone.

But if I relax, the python will take over, squeezing me until I burst.

Nothing makes sense, the pain clouds reason.

No focus except stopping the python, controlling the panic.

The worry that it’s not here just for tonight.

That it wants to settle in for awhile.

Stopping my life again. Ocean, beach, waves, rocks, quote

You never know how strong you are until being strong is the only choice you have.
life

A Lesson in Grief

Amanda, walkamyelinmyshoes

Death leaves a heartache no one can heal, love leaves a memory no one can steal.

A year ago this week, my mother lost her husband. They had been married less than five years but they made the absolute most of every minute they had together. Theirs was a great love story.

Joe was a special person. Sometimes people say that to be nice after someone dies, but he was truly an incredible human being. Some people exude a particular kind of warmth and caring, which makes us lesser humans crave being in their presence. That was Joe.

As shocking and tragic as his death was, only three weeks after his 80th birthday, where a huge community of family and friends came out to honour him, I learned an important lesson from my mother about love and grief. In the midst of her heartbreak at losing the love of her life, she already had it in perspective.

Rather than wallowing in her grief and their short time together, she focussed on the fact that they’d had any time at all. Five years of a great love provides countless wonderful memories, and is more than many are lucky enough to experience. It’s better to have loved and lost, right?

RIP Joe. I feel so fortunate to have known you. We all miss you so much. I love you Mom! Hug your loved ones and don’t wait to say the important things. Life is precious and fleeting.

Have a wonderful week!

❤️ Amanda

chronic illness, Health, life, MS

Tips for staying healthy in cold and flu season

Amanda, walkamyelinmyshoes

The germs are a-coming!

As we approach colder weather and months spent mainly indoors, all the bacteria are getting ready to party, waiting for those unsuspecting souls who will help spread the news and invite those snot-making, cough-producing little buggers into your home and mine.

Having a chronic illness means that a simple cold can knock you out for weeks, if not months, instead of days. People may consider me a germaphobe now but having suffered from pseudo-exacerbations – not a real relapse but just as much fun – after getting the sniffles makes me wary of those invisible little suckers that are everywhere.

Before The End, my years working in the germ factory, aka an elementary school, honed my skills at preventing the spread of colds and viruses, beyond the obvious of washing your hands well, and frequently. So here are my top five tips for staying healthy and preventing the spread of colds and flu viruses this winter.

1) Don’t touch your face.

This may sound strange but if you start paying attention, you will notice how often you touch your nose or mouth. No matter how meticulous our own hygiene, other humans with filthy habits are everywhere, touching everything. Becoming aware of this will cut down on an enormous amount of germs that you let in without even thinking about it.

2) Change hand towels and dishcloths daily.

Excessive? I don’t think so, not when all the germs that come into the house are being wiped off hands and surfaces by those towels.

3) Don’t shake hands.

Yes, people sometimes react like I’ve offended them when I say “I’m sorry, I don’t shake hands in flu season.” That’s okay, I look at it as a public service announcement. Shaking hands is an outdated practice from a time when humans weren’t quite so crammed together. I don’t need to touch you to tell you that I’m pleased to meet you.

4) Use your sleeve or wear gloves when touching surfaces in public.

When opening doors, pushing elevator buttons, or using stair railings, wear gloves or use your sleeve. Sometimes it’s not possible to use your sleeve and you might feel strange wearing gloves inside, in which case don’t touch your face and wash your hands asap. Ultimately though, who cares really if someone thinks you’re a pretentious nut job if you wear gloves indoors – you won’t be snarfing into tissues and hacking up a lung. Seems like a better deal. Maybe we can start a new trend?

5) Wipe doorknobs and light switches weekly.

Starting in bedrooms and working your way through the public rooms, to the bathroom, the front hall and finally the front door(inside and out), give them all a good wipe every week. You don’t need to use the nasty chemical antibacterial crap either. A solution of 3/4 vinegar, 1/4 water, 20-25 drops of tea tree oil and 10-15 drops of lavender oil will do the trick nicely. There are some ‘green’ products that come in handy wipes and if that makes it easier, then go for it. I always use one to wipe down the shopping cart at the grocery store.

A few other things that help me through a potentially snotty season are:

* Oil Of Oregano – if I feel that I’m getting sick I put 5-10 drops under my tongue and wash it down with LOTS of water. It’s an acquired taste.

* Zinc – a tickle in my throat and I start downing the quick dissolve zinc tablets.

* Infrared sauna – if you haven’t tried one, I highly recommend it. I know lots of MSers can’t stand heat so it’s not an option for everyone. I only stay in for 15-20 minutes but it’s a very different, less oppressive heat than a traditional sauna and I can feel it zapping those nasty buggers while I’m in there.

I am not a health professional in any way but I have found these things have helped me avoid getting sick for the last two years. Of course, it could be that my immune system is on overdrive all the time and addicted to my myelin so other germs never have a chance. Not worth taking the chance.

One final public health announcement: If you do get sick, PLEASE STAY HOME! There is a misguided belief in our capitalistic society that it’s a badge of honour to show up at work even when you’re at death’s door. Or to send your kid to school when they’re dribbling booger snakes. Really you’re being an asshole.

Caveat: Single parents reliant on a single pay check are not assholes in this instance. This is where we need to reconnect as communities and help each other out as family, friends and neighbours. Everyone needs a support system.

Noooo! We need to get over this mentality.

I used to say to my students, there are lots of things we should share with each other, germs are not one of them.

Do you have any good tips to share for staying healthy? Let me know in the comments.

Stay healthy, my friends. Have a wonderful week!

❤️ Amanda