chronic illness, life, mental health, MS, Quotes

Pain and anxiety

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, Health, life, MS

Tips for staying healthy in cold and flu season

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

chronic illness, life, MS, writing

Grant, the cabbie has the cure!

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

chronic illness, life, writing

It’s October!!!

Callie’s grateful for her new sleeping platform in the garden.

The month of Canadian Thanksgiving. So, because there are too many things going on right now for me to focus and write an earth-changing blog post😉, I am going to list some of the things I am grateful for:

Our youngest child’s 10th birthday tomorrow. She’ll be getting her ears pierced, just like I did on my tenth birthday, as did her sister.

Her role as a Party Child in The Nutcracker with the Royal Winnipeg Ballet!

Our oldest daughter thriving in the music program at college.

Our son blowing our minds with his knowledge and dedication to learning all about trading – at 16.

Beautiful new raised beds letting me experiment finally with square foot gardening.

Finally making some progress towards our bathroom renovation. It has been years since we could use our bathtub – long story.

Finishing my first draft!!! With thanks to C.S. Lakin at Live Write Thrive for providing the free resources that helped make it possible.

Finding this story workbook tutorial by Stephanie Morrill at GoTeenWriters.com (yes, I’m in denial – don’t bust me!) that makes me feel like I have a direction for a second draft in time for Nanowrimo.

The monster being more or less quiet – or maybe I’m just getting used to it. At the very least, I’m not letting the MS control me like it used to.

There is so much to be thankful for! Mostly, I am grateful to my family and friends and all the amazing people I’ve connected with since I started this blog in June.

I’m just going to leave this lovely lady right here, in the spirit of the season. Check out the dude on her stomach!!

Spider on a web

Have a wonderful week!

❤️ Amanda

chronic illness, life, Quotes

Managing expectations

A tree grows out of a large piece of driftwood.

This quote, adapted from Alexander Pope, struck me as quite negative when I first saw it. Then I realized that it does not refer to those with no dreams or goals, but rather to those who are able to recognize that life doesn’t owe them anything, and that there is beauty and power in the moments when life switches direction or ends as you know it.

There is no roadmap to life. No guidebook, no manual, no training but the experience of living it. Holding tightly to expectations of how life will turn out is a recipe for bitter unhappiness. After almost five decades (say what?? 😱) of experience I have learned that flexibility, the ability to roll with the inevitable punches, is key to managing stress and finding happiness in our busy world.

When you have a chronic illness, there is a new layer to managing expectations. A large part of the learning curve is pacing yourself. You go from being able to handle a full-time job, all the responsibilities of being a parent and/or spouse, running a household, socializing, volunteering and anything else you feel like doing, to measuring out your spoons every day.

And that’s okay. There are many ways to live a life. The challenges and suffering in our lives are what build character, so even in the darkest moments we can try to be thankful for this crazy, magical life we’ve been given. Being present in your life, not dwelling on how you thought things would turn out, or worrying about what the future will bring, in short having no expectations but instead a huge amount of appreciation for the blessings of existence itself, leads to a beautiful life.

Easy? No, of course not. Worth it? Definitely.

Please watch the video below to hear an amazing perspective from a woman who was sick and dying her whole short life. RIP Claire Wineland. 💕💕💕

I’m off to my writing retreat this week. I’m really excited but freaking out a little bit. Okay, a lot. Update when I get back.

Have a wonderful week!

❤️ Amanda