life, MS

Pacing: Whoa, Nelly or Go, Nelly?

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

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!

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

Health, MS, Partners/Caregivers

5 Tips: How to converse with a ‘foggy’

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

life, Poetry

Endings

Endings, beginnings, life

Endings

Why are endings so hard?

We should be masters

Everything ends.

Baby

First the womb

Then the breast

Or bottle, depending

Diapers

Soother

Stroller

Midnight snuggles

Elementary

Innocent imagination

Friendship without agenda

Playing with toys

Middle

Budding breasts

First period

First boyfriend

Hormone fights

This is the end of the beginning.

High school

Independence

Attitude

Virginity???

First view of future

Twenties

High school without boundaries

Knowing everything without knowing you know nothing

Veil lifting

First job

First love

First orgasm – don’t lie

Marriage

Wedding- so much planning, over so fast

Honeymoon

First house

Children

Births – miraculous torture

First steps

First words

Preschool

School years

Empty nest

Sad freedom

First view of legacy

Nostalgia

It all went so fast

Retirement

Adventure, at first

Money, an issue

Health, sneaks up

Full circle

Decisions

Confusion

Hand over

The end.

Beginnings are endings. Endings are beginnings.

Endings, beginnings, life

❤️ Amanda