Tag: chronic illness

gratitude, life, writing

Blogger Recognition Award

Amanda, walkamyelinmyshoes

Happy Thanksgiving to my fellow Canadians! Continuing on the theme of things to be grateful for, I have to thank Ruth at Melanin Talks for nominating me for The Blogger Recognition Award. If you haven’t checked out her blog yet, head on over there for interesting posts from a 20-something Congolese student living in the UK.

In the four months since I started blogging, I have faced my fear that I could scoop my thoughts out of the pea soup of brain fog that invades my life most days. I have also surprised myself and been wonderfully surprised by the reaction and reception of the blogging community.

I have read so many interesting posts, found a ton of amazing blogs and I can honestly say, I have made better connections with some people online in four months than I have made in person my whole adult life. The blogging community rocks!

How it all began – I explained it all here.

Advice to new bloggers

1) Quality not quantity. Post regularly but don’t get caught up in the numbers game. As fun as it may be to watch the stats grow, keep it in perspective. Remember that all things worth doing take time to develop, and doing something well is a process. Not to mention, there is life outside of social media, a fact we need to remind ourselves of more and more.

2) Connect with other bloggers. There is an amazing, supportive community of bloggers ready to welcome you but, just like in life, it has to go both ways. If you want people to be interested in your content, you have to give some love too.

The Rules:

  • Thank the blogger who nominated you and provide a link to their blog
  • Write a post explaining how your blog got started
  • Give 2 pieces of advice to new bloggers
  • Nominate 15 other bloggers you feel deserve some recognition
  • Comment on each blog nominating them, providing the link to the post you created

I decided to pick a mixture of newer blogs, to give those people a boost, and more established blogs that might not need the recognition as much but I feel are important to share.

Writing and poetry

https://poetryforhealing.com/about/

https://daisymae874.wordpress.com/about/

https://poetryfromtheinkwell.wordpress.com/2018/10/07/a-mathematical-statement-senryu/

https://blindwilderness.wordpress.com/aboutme/

https://lilhamilton.wordpress.com/about/

Chronic illness

https://msluckyduck.com/about/

https://msgracefulnot.com/who-am-i/

https://hellofibroblog.wordpress.com/

https://msmsmystoryfightingmultiplesclerosis.com/about/

https://katieslifewithms.wordpress.com/about/

Mental health

https://recoverurself.wordpress.com/about-me/

https://theblackwallblog.wordpress.com/contact/about/

https://insane100.wordpress.com/2018/09/07/men-wont-talk-about-depression-and-its-literally-killing-them/

https://descantsoncivilisation.wordpress.com/2018/10/06/tired-of-fighting-unlock-powerful-strength-in-being-motivator-cognizant/

https://ashipofmyownmaking.wordpress.com/2018/10/08/the-frightening-decline/

Have a wonderful week!

❤️ Amanda

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

life, writing

Camp NaNoWriMo – Yay Me!

Amanda, walkamyelinmyshoes

Toot toot! I normally only post once a week, but I had to share. Despite that crazy old gal Life tossing all sorts of obstacles in my way this month, I managed to succeed at the word count goal I set for myself for Camp Nanowrimo.

I had no idea how many words I would need to finish my current work in progress. That’s some weird writer science that writers can decide how long their project will be and actually hit that target. I’m still in the amoeba stage as a writer so I had no idea.

I wanted to set a manageable goal to increase my chances of success (lower that bar, baby!), so instead of the suggested goal of 50,000 words, I set mine for 30,000. I didn’t manage to write every day, and I had to pull a late-night writing sprint last night to give myself a real shot, but I did it.

I’m almost finished the first draft, and I’ve gotten into a more regular writing routine. I’m excited about the shape my project is taking and I’m motivated to get this puppy done by the end of August. That’s all I hoped to achieve and I have to say it feels pretty damn amazing!

Other exciting news that happened almost at the same time – I got my 150th follower! I had set a flexible goal of seeing if I could reach 150 by the end of the summer, to be there already made my day. Thanks incurable dreamer for making that happen! You should check out her blog, she shares some amazing posts.

Thank you so much to all my followers, anyone who reads a post, and those who take the time to comment. I was so afraid to dip my toes in this pool, and it’s the best thing I’ve done for myself in years. I have already met amazing people online that I consider friends and it’s cathartic to share this journey that used to be so isolating and lonely.

Mille mercis! Danke Schon! Muchas gracias!!!

❤️ Amanda

EDIT: Don’t ever hit the disconnect on your Facebook profile in your wordpress account, even though wordpress can no longer publish posts to your profile. I lost almost half my followers by doing that, and am slowly creeping my way back up. 😩

 

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