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chronic illness, life, Quotes

Managing expectations

Amanda, walkamyelinmyshoes

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

Health, life, writing

Happy New (school) Year!

Amanda, walkamyelinmyshoes

Back to school. Three words that can cause dread or excitement, depending on the person.

For some students, school is a happy place filled with friends, new experiences and the wonder of learning. For others, it’s an institution with rules to make them toe the line, to think and behave in a way that is unnatural to either the way they were born, the way they were raised, or both. Not to mention the social aspect that can be a major stumbling block for so many.

For some parents, the return to school is a welcome relief from either bored, whiny (not in our house, thank you) kids or from toting them to (not to mention paying for) various summer camps while they still have to work their full-time job. For others, back to school means unwelcome early mornings, too many forms and payments, stressed-out kids and the end of freedom from an overbooked schedule.

It’s not surprising that as a child, I loved going back to school since I eventually became a teacher. Having spent the majority of my life adhering to the school calendar, I always find September to be a reflective time, a time of new beginnings and renewal, hope and expectations for new goals set.

For me, it is a much more effective time to consider where I want to be a year from now, than the over-marketed dead-of-winter celebration of New Years Eve that most people I know don’t celebrate anymore. There is something about the cooling of the air after the heat of summer, new stationery (yes I’m geek 🤓), and even a few new duds (so not a shopper) that make me ready to set some manageable goals for the year/season ahead.

Everyone knows that the trick to succeeding at your goals is to not pick too many. There are a million things I could do to improve myself and my life, even though it’s already pretty fantastic. Like I said in my last post, pacing yourself is super important when you have a chronic illness. I also believe strongly in the KISS (keep it simple stupid) principle in all aspects of my life, especially because of brain fog. It’s all about priorities.

So, my simple and hopefully reachable goals for the next four months. Oh yeah, I like to do it short term because so much can change over a year and also – Christmas! 🎄☃️🎅🏻 I always start thinking about Christmas in September, because I’m a bit of a Christmas freak and I love to make crafts as gifts, much to the chagrin of my extended family. 🤣🤣🤣

Health – Being as active as possible.

1) Work my way up to 6 sun salutations at least 5 days a week. Currently, I’m at four several times a week but consistency is my problem.

2) Get my ass back to ballet class. I have to stick with the beginner class this time though. Last time, I went with the level of my (ancient) training, thinking that I would pace myself. Ha! I went too hard and burned out in a few months.

Work – Embrace my new career as a writer. I had to resist putting those two words in quotations. Getting there.

1) Write 5000 words a week until I finish this first draft, which I hope to have done long before Christmas. When I put it away to percolate for a while, I may haul out my first ‘accidental manuscript‘ and see if I can sort out the structure, now that I understand it a bit better. I’m hoping to get a lot of work done at the writing retreat I’m going to in 10 days – very excited about that! Also, sign up for NaNoWriMo in November.

2) Continue posting here, connecting with people and learning more about writing and the chronic and invisible illness community. I’m coming up on my 3 month anniversary of my first post, which is hard to believe. Best thing I’ve done in the last three years!

Personal – Pacing myself and connecting with others.

1) Continue to stay connected closely with my husband and children, regardless of how focussed we all may become on our individual projects. This goes for my extended family and friends too. I’m not great at in staying in touch with my outer circle on a regular basis but I have a wonderful, understanding support network that understands that, for which I am forever grateful.

2) Continue to reflect daily on everyone and everything I have to be thankful for. This is an easy one! 😊

So there we go, I’ve put my goals out there for all to see. If someone had told me I would be sharing myself publicly like this a year ago, I would have scoffed. They say it’s the best way to make yourself accountable, though. I’ll keep you posted!

What about you? What are your hopes, dreams, goals for the back to school new year?

Red roses against a blue sky

Thanks for stopping by! 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

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

Arts, life

Talented kidlets – NEW PAGE!

Amanda, walkamyelinmyshoes

When I need to boost my spirit, the one thing besides my family and my garden (and those damn kitten and puppy videos!) that helps, is watching the amazing talent of young people. Young people who have talent and work hard to improve it to the best of their ability. I wanted to have a page to showcase new, impressive talent and innovation in the upcoming generation. Finding positives to focus on, and highlighting the arts is so important in these bizarre, rocky political times.

Since this is my blog, I’m going to kick off my new page by showcasing the talent of our two beautiful daughters. Like me, they are crazy about musicals and were really excited for Mamma Mia 2: Here We Go Again to come out. Here is their cover of the mother-daughter song “My Love, My Life”.

You can check out the new page here to see dancers, singers and various other talented athletes. Oh, and babies. Nothing can make you smile in spite of yourself like the sound of baby laughter.

The picture below is from my early performing days. 1979, my first year with the Young Canadians of the Calgary Stampede. Funny story: I told my dad I was the puppy in the pink dress. My dad filmed the whole number of the girl in the light pink dress, neither of us clueing in to the fact that there is more than one shade of pink. Mind you, I was nine…ahem… just kidding, Dad 😉. I found these pictures on Facebook last year and there I am! Social media can be a wonderful thing.

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I hope you enjoy the new page. I will periodically add new things and switch it up a bit. I would love any suggestions of new talent to feature. Thanks so much for stopping by!

Have a wonderful week!

❤️ Amanda