Category: MS

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, mental health, MS, writing

Coming to terms with that bugger anxiety

Amanda, walkamyelinmyshoes

First, let me tell you that I shared more pictures of stunning Cortes Island, BC, and beautiful Hollyhock Resort where I spent four days at a writing retreat, at the bottom of this post. So, if you’re not in the mood for reading about the oh-so-fun topic of anxiety, with a side dish of introversion and MS sensory overload, scroll on down.

Ocean, beach, west coast, hollyhock resort, cortes Island, BC, blue sky, white clouds, forest, treesView with a room

Retreats are meant to be times of reflection and self-learning, right? Yeah. Nailed it. I realized that I have been in denial about having anxiety my whole life. This is not something I can blame on the monster of MS. Maybe it’s more acute now since the brain-frying relapse, but it’s how I have always been.

I have always felt inherently unlikable. Fuck. There I said it. Not to be confused with the more pathetic, whiny ‘nobody likes me’. I have a very small but very powerful group of people who like me just fine.

It’s in the unfamiliar, unscripted moments where I do every thing I know how to be friendly, open, interested and engaged (it uses a spoon just thinking about it) and most often the vibe I get is… meh. Or, I’ll talk to you until someone more interesting comes along. Or, I’ll talk to you now like we’re connecting but later I won’t even remember that I talked to you.

The questions then become: Do other people feel this way? Is this just my anxiety? Paranoia? Or am I, in fact, unlikable?

Don’t answer that.

I got called a snob as a teenager because I was so ‘shy’. Truth was, I was this weird thing called an introvert but that wasn’t a recognized thing at the time, it was called being a snob, or anti-social. That’s partly why I started self-medicating early on with drugs and alcohol. Well, and it was the 80s – age of excess.

I have learned as an adult to manage that instinctive desire to hide and forced myself to put myself out there. Knowing everyone is just as self-absorbed as I am helps – I’ll call this Exhibit A, for reasons you’ll see later. But I still find it exhausting, as all hard-core introverts do.

Then, there’s the dwindling number of spoons from being out of my routine, and the sensory issues that make my body react to the chatter of mealtime in the cafeteria like that guy in the old Operation game, except for instead of my nose – that would be unfortunate – my whole body lights up inside. It all adds up to being a tad overwhelming.

So, my body goes into self-protection mode which means withdrawing and being seen as, guess what – anti-social. I don’t want to be the person that uses my disease as an excuse but at the same time it puts limits on me over which I have no control. How to explain that to a group of strangers? Answer: Exhibit A, no one cares because everyone has their own issues.

I have a history of feeling like everyone else understands something about the world and I never got the memo. I don’t mean the existential shit, I think I have as good of a grasp on that as anyone at my age. I mean the social, human stuff. It goes back to always feeling the outsider, feeling less than, needing to excuse myself for taking up space in the world.

I thought I had a better handle on it by now.

I found myself in that classroom, with all these amazing women discussing all sorts of interesting topics and the thought of speaking up had my body vibrating and tingling in all the wrong ways. Damn nervous system.

When I did manage to pluck up the courage to say something, most often I felt like a complete idiot. Red-faced, tear off my sweater before I spontaneously combust embarrassment. Even though – Exhibit A! Note to self: nobody gives a flying fart.

What the whole experience made me realize is that I have had undiagnosed anxiety my whole life that I have, and continue to manage with drugs* and alcohol. In a much healthier way now than in my teens obviously. Promise. Usually anyway. Major lifestyle changes and the coping strategies you can only learn through experience, not to mention an amazing family, all help too.

But it’s always there. Even in the most beautiful places.

Beach, Cortes Island, BC, west coast, dark clouds, obscured sun, driftwoodBeach, driftwood, clouds, blue sky, ocean, west coast, Cortes Island, BC

Hollyhock resort, Cortes Island, BC, west coast, Canada geeseGarden, flowers, alstroemeria, west coast, hollyhock resortGarden, dahlia, flowers, west coast, hollyhock resortGarden, flowers, dahlias, west coast, hollyhock resort

That tingly, vibrating thing I mentioned above? That has completely invaded my body in a most annoying way as I’ve written this post, along with the tears coursing down my face. Anxiety fucking sucks. MS sucks. But, do I regret putting myself out there and trying something new? Never.

Do I regret putting this post out there, at the risk that someone answers ‘that’ question? That remains to be seen. 😉 If even one person can relate to just one part of what I’ve spilled here, it’s worth it.

Whenever I feel like things get too overwhelming, and I need to force myself into the present, I think ‘just put one foot in front of the other‘. Did you hear the song from the Santa Claus Is Coming To Town movie when you read that, or is it just me – the Christmas and musical geek? 🤓😊 Putting on my headphones and listening to music always helps too. Spotify is my new favourite app.

I would, of course, welcome any comments, answers, illuminations, wisdom, advice, input. More pictures below.

Have a wonderful week!

❤️ Amanda

Here are some articles you might find useful if, like me, you sometimes feel you were dropped here from another planet. My results from the anxiety assessment were surprising, and yet not.

15 Signs That You’re An Introvert With High-Functioning Anxiety

Anxiety in MS: Frequently Overlooked and Undetected

MS and Anxiety – free anxiety assessment

Marijuana And Meditation May Both Reduce Anxiety. Which Is Better?

*Cannabis aka marijuana aka weed aka pot aka ganja, etc is known as a tribal medicine for multiple sclerosis. Meaning MS was one of the first diseases to be recognized as gaining relief from its use. All I can say is I’m grateful that I’ve lived to see the day that it is legal and the medical community is finally starting to recognize the powerful benefits of this natural remedy. But that’s another post.

Garden, flowers, vegetables, west coast, hollyhock resort
The garden at Hollyhock is stunning and provides many fresh ingredients for the delicious meals.

Garden, vegetables, west coast, hollyhock resortGarden, vegetables, peppers, west coast, hollyhock resortGarden, flowers, alstroemeria, west coast, hollyhock resortGarden, vegetables, irrigation, hollyhock resort

life, MS

Pacing: Whoa, Nelly or Go, Nelly?

Amanda, walkamyelinmyshoes

Last week, I posted about resting and the importance of taking the time for self-care without feeling guilty. It’s a common problem in our go-go-go world, where there are always errands to run, household chores to get through, work to do, exercise hopefully, eating right, not to mention connecting with family and friends.

It’s not surprising that the mindfulness movement is gaining traction. People are burning themselves out and have forgotten how to be still. How to just BE.

I am so fortunate to have the support and the space to rest when I need to and to have lots of time, now that I’m not working, to spend time reflecting and contemplating my navel. Not really, I promise.

When your body aches from fatigue, it’s pretty tempting to sit around as much as possible. The mental stress aside, spending too much time sedentary is really hard on your body, especially if you have MS. Obviously I’m not talking about people that are in a relapse or are paralyzed from the monster.

Being as active as possible is now the recommendation of doctors, which applies to all humans, not just warriors and spoonies. It works for me. It takes me a long time to get moving in the morning, but when I spend too much time in bed, the weight of the fatigue and the various pains become overwhelming. Forcing myself to get up and accomplish just one task, distracts me and often I am able to accomplish much more than I expected.

That’s where the real problem comes in. I start going, and I have a hard time stopping. My body protests but my brain, and the stupid determination that has mostly served me well, says ‘Just. One. More. Thing.’

All good, we all need to push ourselves, that’s the human spirit. Not so good when your body ends up going on strike and you spend the next three weeks in bed. Yeah, I think that’s called a need for BALANCE.

The hummingbird has long been a personal symbol. I remember the first time I saw one as a child in Alberta, where they are quite rare as I recall. It was magical, this tiny bird with wings that moved at an incomprehensible speed.

I found out as an adult that my Oma loved hummingbirds too. Since she died, I have had numerous experiences with a hummingbird flying directly in front of me and hovering for a minute or more, often at times of personal change or turmoil.

I think the reason it speaks to me, is that the wings represent the speed of my brain. Not that I haven’t learned to quiet my thoughts and have moments of peace, but when I get going on a task my brain is always ten steps ahead of what’s humanly possible. Then, because of the damn monster, my body konks out long before my brain is satisfied.

The hummingbird’s body always stays calm, though. That’s the essence of the hummingbird I try to focus on now. The balance between the busy and the calm. Push yourself, but don’t push too hard. Expect great things from yourself but be gentle with yourself too. Pacing yourself, that’s the golden ticket.

Have a wonderful week!

❤️ Amanda

Health, MS, Partners/Caregivers

5 Tips: How to converse with a ‘foggy’

Amanda, walkamyelinmyshoes

Brain fog causes issues with processing and comprehension. Here are some things to remember to help conversations flow more easily when you’re speaking to someone with brain fog.

Memory issues

1. Don’t change the subject.

It’s a very wavery tightrope to collect your thoughts and articulate them clearly when your brain is drowning in cotton. When you change the subject mid-conversation, often we can’t retrieve the original thought that just might have been world-altering.

2. Don’t ask questions until we’re finished speaking.

Again, any interruption throws the train off the tracks so even if you think being an attentive listener means asking questions, hold back. It can be a ridiculous feeling of success to process and articulate a complete thought when your brain doesn’t want to cooperate so please allow the time and space for that to happen, without interrupting.

3. Don’t talk to us when we’re trying to complete another task.

Multi-tasking is the gold standard for success these days, everyone is SO BUSY! Brain fog allows a person to only complete the simplest of tasks, one at a time. Please don’t try to chat if they are trying to cook or even tie their shoes. Every task takes so much mental (and physical) energy, it is impossible to split the focus.

4. Speak clearly and slowly, don’t mumble.

It takes as much effort to listen and process the message receiving information when Charlotte has spun her web so thoroughly in your noggin. Again, allow time and space for processing and for Pete’s sake, speak loudly and clearly. But not like we’re morons. Thanks.

5. Accept a grunt as a polite response.

Sometimes carrying on a conversation is more than we can handle. Don’t take it personally. It’s sort of like when toddlers ‘hit the wall’ – “Complete meltdown approaching, back away, BACK AWAY!”

Brain fog affects many people living with chronic illness. For many, it never goes away, it just changes in its severity. I hope these tips help your next conversation with a foggy to proceed without too many hiccups.

Do you have any tips to add? What is the most difficult aspect of conversing when you’re suffering from brain fog?

Thanks for stopping by! Have a great week!

May the spoons be ever in your favour

❤️ Amanda

Health, life, MS

Anxiety : Depression’s partner-in-crime

Amanda, walkamyelinmyshoes

Walking the tightrope of ms relapse prevention and symptom management while juggling life stress, heat intolerance, sensory overload, the ogre of depression and its craptastic partner-in-crime, anxiety.

We spent an incredible weekend in Vancouver, going to see the Psychedelic Furs, a band I started listening to in 1985, the year I met my husband. Nostalgia aside, they were maybe not the most exciting live band but we had a whole second show play out in front of us. It ended with a very eccentric, obnoxious man throwing his drink in his ex’s face, spraying all of us nearby. Oh, the drama.

Going to Vancouver usually stresses me out with all the traffic, the dreaded George Massey tunnel, the smells, the noise, the people everywhere. The chaotic energy of a big city is exhausting but it’s worth it to spend a night away watching live music with my husband.

This time traffic was mellow, even on a weekend at the height of summer. Everything fell into place beautifully everywhere we went so there was little stress and the monster was quiet so I felt pretty great, all things considered. Happy hour cocktails at the Cactus Club may have helped a bit, too. 🍹

Even the drive back out to the ferry, because we left the city early and went to check out the new mall, Tsawwassen Mills, was a fun, stress-free adventure. I’m not a mall rat and typically think a mall is a mall is a mall but they have done a very thoughtful job of incorporating First Nations artwork and unique elements that make walking around the ginormous space a mall experience unlike any I’ve had before.

First Nations metal wolf sculpture

Part of the joy of being an island-dweller is the hurry-up-and-wait experience of riding the ferry. I’m mostly patient and can amuse myself pretty easily but we all know how hot this summer has been in the northern hemisphere. Sitting in a truck on the end of a man-made jetty covered in concrete, full of metal cars and huge semi-trailers is a special kind of torture for every traveller.

Heat sensitivity is a common symptom of multiple sclerosis. Being the annoying mofo that it is, my body can tolerate heat or cold just fine most of the time. Until it suddenly can’t and all hell breaks loose. I think my thermostat’s broken.

So, my sweater is hanging off the sun visor shielding my body from the sun, doors and windows all open to catch the cool ocean breeze, all is well. Then the wind dies, the sun’s still beating down on me through the side window and a mushroom cloud of heat wafts up from the pavement.

Knock knock. Who’s there?

Hot, too hot.

Brain frying, can’t think

Panic starts, ears ringing.

Hello Anxiety.

Anxiety is another special gift the monster has given me in the last few years. It is closely related to depression in that they share the all-encompassing feeling of doom. The only thing that makes it controllable is knowing that it is a result of the damage in my brain, it is not real.

On the tarmac, I ended up going into the relative cool of the marketplace, to be faced with all the other overheated humans seeking relief.

Hello Sensory overload.

Tune it out. Blinders on. Focus on stationary objects.

Jewelry. Oh, pretty. Slowly inspect.

Cool down. Calm down.

Sea salt scrub. 50% off. Sure!

Hot, too many people.

Stuffy. Loud. Too much.

When I got back to the car, we had the bright idea of using the air-conditioning. Oh, sweet relief! I don’t love idling a car for any longer than necessary but when it comes to being either environmentally responsible or saving my brain and body from total meltdown, I will be unapologetically selfish. Please remember this if you’re tempted to judge someone for idling their car in the future. It can be a case of life or death for some people in this kind of heat.

People always worry about the dogs but, you know, humans.

Just after we boarded, a camper van got stuck partway on to the ferry, delaying the other cars and ultimately, our departure as they eventually had to back off the ramp. I could feel the spinny, bubbly feeling beginning again in my head that happens when my thermostat’s awry and I overheat. Then, anxiety prickled its knives that I was stuck in this hot car with no air moving for who knows how long and idling your car on the ferry isn’t an option, so no air conditioning.

Sensory overload or not, up I go just until the boat starts moving. Normally we stay in the car the whole time to avoid the crowds as I’ve always had enough after two days in Vancouver but again my thermostat was in control. I go up the stairs straight into the line-up already building for the buffet.

I quickly veer myself into the small hallway by the chief steward’s office and prop myself against a window, watching the hordes of people boarding and lining up. I try to enjoy the enthusiasm of the young Japanese tourists on a ferry for the first time. Their excitement is adorable and appreciated.

Then they swarm around me to look out the window and take pictures. Of the ugly piers.

Over my head.

Okay. Breathe.

They’re gone.

Another group.

Wait. Breathe. The ferry will be moving soon.

One window further over. Look out at the water.

See the diamonds dropped by the sun

Sparkling all over the water.

A bird, diving.

When will the boat move?

Look back at the growing noise.

Buffet line has sealed off my exit.

Swallow down the fear.

Irrational.

Line will move. Boat will move. Time will move.

Please move!!!

Breathe.

Just breathe.

I am only grappling with one tentacle of the octopus of anxiety. Many people are paralyzed in their lives, unable to function because they are crippled by the many facets of this mental monster. Yet again, there is still such a stigma about mental illness. I wanted to share a small glimpse into what the experience is like for me, just to open the discussion and share information to spread awareness.

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Thanks so much for stopping by. I always appreciate any comments or insights about my posts but if you’ve taken the time to read it at all, I am honoured, and I appreciate it so much.

Have a wonderful week!

❤️ Amanda