Category: life

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.

img_1048

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

Health, life, MS

Not so sunshiny days- Depression and awareness

Amanda, walkamyelinmyshoes

Depression

Last summer was the first time since adolescence that I experienced true depression. Luckily, this time I had the knowledge, wisdom and support to see it for what it was.

When I was a teenager at boarding school, I told nobody and suffered in silence until I acted out in despair and swallowed a handful of Tylenol. Nobody found out about that either. I wasn’t trying to kill myself, just trying to make the pain stop.

That phase was an exception, I consider myself blessed to be born with a generally happy disposition. As a child, the world was alive in my imagination; not only my dolls and teddy bears were alive but all living things fascinated me and talked to me. Seriously. Okay, I talked to them but I swear they talked back!

I still have the habit of talking to myself and objects around me. As a teacher, I would sometimes have parents waiting outside because they thought I was in a meeting when I was just having a grand old chat with myself. I usually have a smile on my face and I genuinely enjoy interacting with other people when I’m out in the world.

We all have days where we feel ‘blah’, the sky not so blue, the flowers not so bright. This is the necessary balance to life because if we don’t experience the lows, we can’t fully appreciate the highs. The idea of living in a utopia where nothing bad ever happens and everyone is happy all the time is appealing but unrealistic. It would be nice if we could tip the scales just a bit further in the positive direction somehow though, wouldn’t it?😉

Depression is an entirely different ogre. Depression sits in the pit of your stomach, chained to your heart, sucking all motivation and positivity from your thoughts.

Depression feels like you’re drowning in front of a crowd but no one can see you

Finding motivation and staying positive are constant challenges with any chronic illness already. The constant weight of fatigue multiplied by the pressure of depression starts to make me feel claustrophobic in my own body. Um…yeah.

I had not planned to post about depression this week, but IT’S BACK! The hard kernel of dread and doom has been festering there in my gut, as I’ve tried to control my stress, get lots of rest, eat well, exercise, meditate, communicate, blah, blah, BLAH. The cloud grows.

My question is this: why do my physical symptoms ease in the summer just for the mental monsters to come out to play? It would make more sense to get depressed in the winter when the skies are grey and the fatigue and nerve pain are at their worst. Easier to justify staying in bed with the covers pulled up to my chin then, too.

When the sun is shining, there are vegetables and plants to be tended, not to mention children(thank goodness they’re older), so guilt pokes out its claws too.

What’s there to be depressed about, for Pete’s sake? Stiff upper lip, role model, it’s okay to feel it but you still have to get on with life. All those negative inner voices that I usually scoff at, get amplified when this bugger shows up, too. Good times.

Does this happen to anyone else, this summertime depression?

Awareness

Depression is the most prevalent invisible illness in our modern world, affecting every echelon of society, yet the stigma remains. People suffer in silence and isolation and/or quietly accept the next prescription for anti-depressants, only admitting to their closest circle, if anyone, that they couldn’t handle the darkness anymore.

Depression is a common symptom of multiple sclerosis so it’s a double whammy of an invisible illness. I am fortunate to have a wonderful partner that wants to help and tries to understand what it’s like to live in my body. I feel the frustration of his helplessness that there really is nothing he can do beyond being the caring, attentive, goofy guy that he is. The best I can do is help him understand.

Analogies seem to be the most effective way to help people understand an experience they haven’t had. So, I started thinking about ways to describe depression. My depression, being usually (god, I hope so) short-lived, is the Lite version compared to what many experience day in, day out their whole lives. So I’m sure there are many better analogies out there, but these are the ones I came up with.

Depression is like:

– swallowing a cannonball that chains itself to your heart then leaks radioactive material that poisons your thoughts.

– alternately wanting to burst into tears, shriek at the sky or throw up every second even though your life is perfect.

– Voldemort sent all the Dementors inside your body where they are multiplying as they suck out your soul.

– you’ve woken in a nightmare and no matter how hard you slap yourself, you can’t wake up.

– being in a Dali painting, sliding off the surface of reality. For me, time is a huge factor because now that I’m not ‘working’, I see all the things that need doing, all the time, but my energy doesn’t measure up to my desire to get shit done. Then, depression sucks out the motivation too.

img_0914

– finding that patch of quicksand I searched for as a kid, wondering why I ever wanted to know what it felt like.

– stepping in shit, knowing that you’re standing in shit, seeing the clear path to get out of the shit, and not having enough fucks to give to bother.

– being Wile E. Coyote when the anvil ends up on his chest.

How do you describe depression?

Please share your thoughts and ideas in the comments, I’m sure there are many of you that have better analogies.

Helping other people understand using examples they can relate to is a simple way to build awareness and end the stigma.

And don’t forget the very important lesson of Eeyore:

Have a wonderful week, everyone! Thanks so much for stopping by!

❤️ Amanda

life, Quotes

No day but today – Fight the trumpidemic!

Amanda, walkamyelinmyshoes

525,600 minutes in a year.

That’s 1440 minutes every day that each person has to make the myriad of choices, big and small, that we all face daily.

Ultimately though, the one choice that will really make a meaningful difference in this world, both for individuals and for humanity as a whole, as trite as it may sound, is LOVE.

If we can tap into that emotion every day, especially the dark days, and more importantly show it in our actions, the haters can’t win.

I was lucky enough to see Rent onstage in Vancouver twenty years ago, two years after its debut. Rent is a rock musical written by Jonathan Larson, who died suddenly at 36, the morning of its off-Broadway debut in 1996. Talk about no day but today. RIP Jonathan.

I listened to the soundtrack on my road trip last month because the Victoria Operatic Society is performing the musical this fall. My nine year old will be disappointed there are no suitable roles for her. ☺️

Rent is loosely based on the opera “La Bohème” by Puccini, which concerns starving artists in Paris in the 1840s, facing the tuberculosis epidemic. Rent places the struggling artists in New York City in the 1990s, facing the AIDS epidemic.

In 2018, the messages of both these great works are more important than ever as the world faces the trumpidemic that threatens to tear apart the United States. Is that melodramatic? Maybe. I hope so.

As a white, cisgender woman growing up and living in a middle class neighbourhood in Canada, I have been spared the horrific abuse I see hurled at the marginalized, though even as a young girl it hurt my heart to realize humans could treat each other so badly.

Now being a member of another marginalized group, the disabled, I have an inkling (the teeniest for sure) of the challenges so many people face in being accepted and valued in our society.

Diversity, tolerance, love, friendship, hope, despair, addiction, disease, discrimination, the class divide and the death of art – timeless themes that we human beings should have a better handle on by now.

Instead, a Muppet-like wannabe dictator (sorry Jim Henson) a misguided, heartless president is sowing the seeds of hatred, intolerance and bigotry through his ridiculous Twitterganda and isolationism.

The strongest weapon against his particular brand of nastiness, is LOVE. Seasons of love, people, that’s what we need.

No day but today.

Have you seen Rent? If not, I highly recommend! The actual musical is way better but they did a great job with the movie which includes most of the original Broadway cast. It’s on Netflix. 😊

I propose we start a new hashtag movement. It seems the haters and the trolls are the ones who spend time and energy spewing hatred online. Rather than wasting our (precious spoonie) energy by engaging in a useless attempt at intelligent debate, let’s drown them with a tsunami of #fightthetrumpidemic and #chooselove hashtags every time they comment.

In order to stem the tide of ignorance and hate, we have to overcome the apathy, stop talking amongst ourselves and start fighting back. Who’s with me?

Heart shaped clearing in the clouds framing the words.
Fight the trumpidemic. Choose LOVE!

Thanks so much for stopping by. Have a wonderful week!

❤️ Amanda

life, Poetry

The End – 20 years before retirement

Amanda, walkamyelinmyshoes

On June 28, 2018, I walked out of ‘my’ classroom for the last time. I haven’t been teaching for the last three years thanks to the monster, but it was still my position and my room to come back to, if I was able. No more.

I went back to pick up this clown (I know, weird.) that I used to have in my childhood bedroom. I used him to teach about perseverance and hanging on when things get difficult so it seemed appropriate to bring him home and hang him in the garden. I had forgotten that I had about ten other boxes of teaching resources that I had created and stored away, as well as various toys and games.

Besides retrieving some stationary supplies and containers that I had bought myself, I also came across a file of photos and special thank you cards I had received over the years. Before I thought to have a look at them and focus on the good, I had to let myself wallow in the sadness for awhile. I tried distracting myself with feel-good videos on Facebook, but the words and emotions had to come out.

The End

The words won’t come

It hurts too much

Distract

Distract

This time the pain’s not physical.

The road stretches in front

Up hills and

Down

But you’re never prepared

For the S curve.

Suddenly

Life changes direction

Floundering

Stumbling

This pain is not physical.

What if?

How come?

Did I?

And the ever popular

Why me?

A career takes a long time to build

So many layers of learning

Acquired only through years of experience

Successes

Failures

But always growth.

Over

The end

No fanfare

No goodbye

Sorting through once important things

Leaving it all behind for others

Hopefully not for the garbage

This pain is not physical.

This pain is suffocating.

Heavy. As I’ve gotten older, my eyes have started doing this terrible swelling thing whenever I cry. I look like the poor kid from ‘Mask’ today. But, perspective has returned.

I can’t change the direction my life has taken, all I can do is make the most of where I’m going. I may not have had as many years as I would have liked to become the teacher I wanted to be, but I have so many wonderful memories. The feeling of knowing that you have touched young lives and started off their educational journey on a positive note, is priceless.

Eager students, brilliant colleagues, appreciative parents and the wonder and simplicity of kid art. These are the things I choose to focus on, instead of what might have been. Life only goes in one direction. I’m on a new path and I’m going to continue striving to do the best I can and be the best person I can be. In that way, nothing has changed.

Cherubic faces and cherished colleagues
Parents taking the time to acknowledge means so much
And even more from the kids! Love their phonetic spelling. 🙂

Toot toot! Such a thoughtful gift from a parent.

The list above was part of a time capsule project in celebration of the centennial of our school. I love how many of them spoke about extra play time after recess. Kids learn through play, and they know it.

I want to end this post on a lighter note with some of the cute and often mind-blowingly wise answers they gave to the question:

“What advice would you give to future generations?”

– Follow what the teacher tells you to do. Have a really good life, be smart, grow up to be really proud about yourself.

– Don’t worry.

– I would give homeless people a home, I would make everything in the world free, I would make as much water as there could be, and I would make sure the world never ends.

– If somebody didn’t know they were being a little mean, I would like to tell them not to be mean.

– Take care of yourself.

– To be a good learner.

– That recess is an hour long and the time to eat their lunch is longer so they don’t have to rush, and that they get lots of playtime. Pets in the school, a bunch of flowers for the field and lollipops for life.

– Keep safe. Grow more trees.

– If they didn’t know how to fly a kite I would teach them.

– Don’t play with matches.

– Go west, that’s the best way to go. (🤣 Boy, I loved that kid! You can just imagine…)

– Know how to play video games.

– Give them advice on how to be a good spy.

– Listen to their teacher and love their family.

– Have fun and learn lots.

– Work hard.

– Love is the most important thing.

I’d say they pretty much have it covered. 😊

On a final note, I am so grateful for the support I have received from people in my personal life as well as many unmet fellow Spoonies in this new chapter. There is an awful lot of ugliness in the world and unfortunately that is often the focus in the news. There is also a lot of love, empathy and compassion flowing quietly underneath. Thank you so much to the kind souls who have reached out in support and understanding, it helps so much. Love is, truly, the most important thing.

Thanks so much for stopping by. Have a wonderful week!

❤️ Amanda

When the going gets tough, hang on tight. Try again tomorrow. 💕
life

Wild West Coast

Amanda, walkamyelinmyshoes
View of the beach emerging from the private trail from our campsite.
View of the beach emerging from the private trail from our campsite. Photo: M. Cockayne

I am so incredibly fortunate to live on Vancouver Island. As I said in my last post, I was off camping last week at Pachena Bay Campground which is on the west coast near Bamfield, BC. The drive is an adventure in itself, two and half hours on dusty, bumpy logging roads from Port Alberni. Every teeth-chattering, slow-going minute is worth it once you arrive, though.

As it turned out, the first day was the nicest weather we had so it wasn’t exactly the tropical vacation we hoped for. When you’re camping in a coastal temperate rainforest, you take your chances. Instead of sweltering in the heat wave the rest of the island and most of North America it seems, was suffering, we were in our layers of fleece, toques and rain jackets.  Like most MSers, I’d rather a bit of fog, wind and misty rain than having the carnival of symptoms start when my body temperature rises.

Fog descends into the trees, creeping in from off the ocean.
Change in the weather, the fog rolls in.
Fog obscuring the tops of trees at the edge of a sandy beach with driftwood.
Fog is a regular occurrence but often blows off later in the afternoon or early evening.

When the tide is out, the enormous beach triples in size, impossible to capture in a photo. One day, we walked far out along the beach exploring tide pools towards the beginning of The West Coast Trail. We were going to walk a bit of the trail until we got to some of the ladders, which we have done in the past. Almost there, I looked down and saw this:

Fresh bear tracks on a wet sand beach on the west coast of Vancouver Island.
Would you turn around or take your chances? Photo: M.Cockayne

Fresh bear tracks leading down a wet beach on the west coast of Vancouver IslandThe beautiful patterns in the sand with the fresh bear tracks leading away made the moment magical. And sped up our pace on the way back! Photo: M. Cockayne

We knew we were in bear and cougar country but seeing fresh evidence that we were right on the heels of Baloo? Yes, we turned around and headed back towards the main beach. ☺️ (Photo credits to Miranda Cockayne as my dinosaur of an iPhone died.)

Four days and nights of living in the forest, sharing secrets and too many laughs with one of my longest (not oldest, see what I did there? 😉) and dearest friends, building fires on the beach, watching the ospreys and eagles diving into the ocean, unplugging from the world (for the most part, they have wifi at the main office now), and plugging into the inspiration I always feel when I remove myself from the manmade and reconnect with the natural world.

Old growth cedar trees, ferns, bridge, west coast trail

It’s even worth the week of recovery from not sleeping and just being out of my usual routine. No matter how careful I am about eating well and hydrating, I never sleep well when camping or away from my own bed, actually. Are other MSers and chronically ill people the same? Does a change in your routine inevitably exacerbate your symptoms?

One thing I will make sure we do next year, is go on a Kiixin Tour.

“Kiix̣in is the site of a 19th-century village and fortress that exhibits evidence of occupation dating to 1000 B.C.E. Today, it remains a sacred site to the present-day Huu-ay-aht First Nations.”

Thank you to the Huu-ay-aht First Nations for sharing your amazing piece of paradise!

Have a wonderful week everyone!

❤️ Amanda