Tag: Multiple sclerosis

life

Infrared Sauna: Flu killer

Amanda, walkamyelinmyshoes

We made it the whole winter with nary a sniffle, then the first day of spring our eldest woke up with the flu. Then our youngest succumbed. It’s a nasty one too, (what flu isn’t), fever, dizziness, headache, nausea and a deep, retching cough.

Having MS, I’m pretty paranoid about getting sick. Simply because what could be a three week ordeal for a healthy person, could drag me down for months. So, I followed my Tips for staying healthy in cold and flu season. Oh, and ate LOTS of garlic! 🤭

Still, the achy, weak fatigue descended. Although, it was difficult to tell if that was the flu because it’s pretty much how I feel all the time. It was when the cough appeared, painful as a badly scraped knee, accompanied by a killer headache that I knew it got me.

So, that’s when I followed my ultimate tip, and got myself into the infrared sauna. I stayed in for thirty minutes two days in a row, and while I have a cough and a bit of a headache, I believe the heat of the sauna staved off the worst of it. It’s like having a fever to kill off the nasties, without having to go through the nastiness of a fever.

A lot of people with MS suffer from heat intolerance, and I’m one of them depending on the day. The kind of heat produced in an infrared sauna is different though, not at all like the dry heat of a traditional sauna, or the sun. I find that if I don’t do it very often, it doesn’t affect my symptoms at all.

And if it killed off those flu bugs before they took a real hold, it’s definitely worth it. Mind you, my other theory is that my immune system is so overactive, that it might not have got me as badly even without the sauna.

Other MSers, do you find that don’t get sick as often or as badly since you had MS? Probably it’s like everything with this crazy disease, different for everyone. Well, I hope none of you have been ravaged by the flu this year, and if you feel something coming on, I strongly urge you to find an infrared sauna near you.

Stay healthy, lovelies!

❤️ 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.
chronic illness, life, MS, writing

Grant, the cabbie has the cure!

Amanda, walkamyelinmyshoes

I wake up slightly hungover and more than ready to get home. Strung out after four days facing my own anxiety and the fact that some women never leave high school, I need some serious solitude. I phone a cab and wait outside in the crisp morning air, dying for coffee.

The cab pulls up and the white-haired driver gets out. Red suspenders hold up dirty brown pants and a stained blue dress shirt stretches over an enormous belly. Sparkling blue eyes magnify curiosity behind enormous glasses.

“Where are you off to this fine morning, young lady?” He peeps at me in the rear view mirror and tips his grimy white baseball cap.

“Home to Victoria. I missed my bus yesterday so I was staying with a friend.” I’m taking shallow breaths because the air in the cab is custard thick with that sickly-sweet old man smell. It doesn’t feel right to open the window. I don’t know why.

“And what do you do in Victoria, young lady?”

“Well, I’m a teacher by trade but I don’t teach anymore. Now I’m a writer.” There, I said it without air quotes. Yay me!

“And why is it that you no longer teach, may I ask?”

“I have MS. I would love to —”

“I know how to cure that. It’s one of two things.”

Jesus. “Oh yeah?”

“Absolutely. It’s either a yeast overgrowth or a magnesium deficiency.”

Haven’t heard those before.

I try to stare out the window as he pontificates nonsensically but he keeps eyeballing me through the rear view.

He tells me he sells essential oils and I want to laugh, but I can barely breathe.

The longest ten-minute cab ride finally ends. He hands me a card with the words ‘wellness advocate’ under his name before he gets out to open the trunk.

He lets me get my own suitcase as he starts telling me about his prostate. Seriously. I finally cut him off and say I need coffee. He makes sure to tell me that he’s going to get coffee too, but in the car.

I’m sitting in Starbucks with my headphones on and see him drive by, glasses peering through the window. Several minutes later, I spot him in my peripheral vision. He’s come inside and he’s trying to get my attention. Oh for the love of all that’s holy.

Thank god for technology.

**********************************************************************************

This is an excerpt from a short story I wrote after the writing retreat I went to in September. This dude just may pop up in my fiction at some point – who needs to make characters up when these kinds of people show up in your life? I wish my powers of description could do him justice, he truly was something else. His card is still on our fridge – haha!

Just to be clear:

1) There is NO CURE for multiple sclerosis.

2) Warriors find it really annoying when people suggest they know how to fix us, if we just follow their latest fad. Most of us have tried many, many different therapies and medications. MS is a complex disease that affects every person in a different way on a different day. If you have something to suggest, I’m all ears – if it’s done with sensitivity and respect.

Do you have stories of people giving you the magic cure? I’d love to hear them!

Have a wonderful week!

❤️ Amanda

life, writing

Resting is not selfish

Amanda, walkamyelinmyshoes

I apologize to my followers for the glitch last night in sending out a blog post prematurely. Oops.

Anyway, my cup is feeling a bit empty and stained these days so I’m taking time to do things, and not do anything, in order to build up a few spoons and not end up in a relapse.

Below are some current pictures of our garden. When we bought our house nine years ago, the backyard was all sloped lawn. All the rocks, dirt, and driftwood you see were hauled in singlehandedly by my husband. Whether I sit in silent contemplation or take on some simple weeding, the garden is my sanctuary.

I’m off to my other piece of paradise, Willows Beach, also known as my office. It’s my favourite place to write, and my fiction has been stagnating at the bottom of my empty cup for the last few days so I’m hoping the words will flow today as I look out at Oak Bay Harbour and Marina.

Take time to do the things that recharge your spirit, and don’t allow those niggling feelings of guilt any space at all. She says to herself, over and over and over…

Have a wonderful week!

❤️ Amanda