MS

Raw

I need to know

Do other MSers feel it too?

A sudden rawness

Burning

Tingling

In the tongue

Lips

Palms of hands

Soles of feet

Eyelids

MS?

Is it the myelin being destroyed

By my own cells?

Most uncomfortable

Anxiety-inducing

Go away now.

chronic illness, life, Poetry

Voodoo Doll: MS Awareness

Huge stakes pierce my heels

Burning red hot fire

Millions of minuscule knives

Flay the insides of my feet

A giant vegetable peeler slices off

The bottoms

*

I’m sorry to those I squashed

Those I looked down upon

From any temporary high ground

I believed I held

I am your voodoo doll

And you will have your revenge

Over and over

*

The burning piercing spreads

To hands, up legs, then forearms

Who needs to work on abs

When they stay contracted constantly

Holding in the moans

And the nausea from the pain?

*

I’m sorry to those I squashed

Those I looked down upon

From any temporary high ground

I believed I held

I am your voodoo doll

And you will have your revenge

Over and over


I don’t really believe that my chronic illness is a matter of revenge, but it’s an easy trap to fall into when I’m trying to pretend all is well but the pain is overwhelming. I think of myself as a kind person but I know in my past immature, insecure life I wasn’t always the best person I could be. However, we can only go forward and try to do better.

Kindness is the answer.

❤️ Amanda

chronic illness, life, mental health

Milestones and Reflections

At the beginning of June, I celebrated the first year of my blog. It was a huge step for uber-private me last year but the response once I finally faced my fear and hit publish was unreal. I can’t believe I have over 500 followers. More importantly, I can’t believe the support I’ve received and the friends I’ve made in this wonderful community. I’m so grateful. Thank you all. 💕

On this day four years ago, I received my MS diagnosis in the morning before going back to school for the last afternoon with my class. I didn’t know it would be the last afternoon I would spend as a teacher at the time.

It’s been an interesting journey, to say the least. The physical symptoms, especially the fatigue, stopped me teaching but the mental gymnastics associated with being chronically ill really stopped me in my tracks.

Fear, grief, anxiety, depression, guilt. Oh, the guilt! Learning to say ‘I can’t’ – especially to my children, forcing myself to stop when I ‘should’ get a little more done, unable to enjoy the good days because I ‘should’ be working.

I’ve learned to mostly maintain perspective when the anxiety and depression hit because I know it’s temporary, no matter how black. The fear hits pretty strongly when my body does it’s weird party tricks. (numbness, tingling, burning, buzzing, dizziness, tinnitus, spasms, trembling, pain and the fatigue that courses through my veins. #msawareness)

But life is scary for everybody in one way or another. Perspective.

The guilt has been the nastiest of the negatives. It comes up over and over and I’ve struggled to gain the same perspective, especially on the good days. I’d love so much to be back in the classroom that when the uglies lessen a bit, I forget how bad they are and feel I should at least try to go back to work. When they inevitably reappear, I remember why I can’t do the job I love so much.

Four years on, I’m done with the guilt on my good days. I won’t compromise the health I’ve regained since I stopped working by forcing myself to go back to work. And I won’t waste the bonus time I do get feeling guilty anymore, dammit! So there, MS. 🤗 From now on, I’m doing ‘jazz hands’ any time the guilt creeps in – haha!

This day marks a milestone for each of our younger children as well. After knocking our socks off at her Variety Show on Monday singing ‘Defying Gravity’ – (check out my instagram or facebook for the video), our youngest is finishing her last day at elementary school. It’s truly the end of an era, as we started there an unbelievable 15 years ago when our eldest was in kindergarten. Not to mention that my husband and his mother also went to the same school!

Our son is finishing his last day of high school, heading across the country to study Economics at Western University in September. Needless to say, we are incredibly proud of his achievements so far and excited for him, but there will be a big hole in our family that will take getting used to. It’s all as it should be and we can’t wait to see where he goes with his life. This kid is motivated!

Finally, our eldest got her first car so now we have our own taxi 😉 she’s embarking on a whole new level of independence and financial responsibility. We have no doubt she’ll manage her shiny new car with her usual attention and responsibility, and have lots of great adventures in the years to come.

So it’s the end of June and the beginning of summer vacation. The garden’s in great shape, the kids all have exciting plans for the summer, and we have lots of camping planned in our new tent trailer. It’s going to be a great summer!

❤️ Amanda

life

Walking on the moon – Gabriola Island

Instead of camping in the very wet rainforest on the west coast of Vancouver Island, I took my second camping trip of 2019 on beautiful Gabriola Island, one of the Gulf Islands between Vancouver Island and the mainland. The landscape was incredible, sandstone rock formations and erosions all over the beaches and a beautiful, dry forest to tent in.

I didn’t bring our new trailer because it hadn’t been safety inspected yet so I wasn’t going to drive it up-island to Nanaimo where I met my camping partner-in-crime and we caught the short ferry to Gabriola. Good news – the trailer checked out beautifully, all she needs is a new set of tires! We’ll get that done next week before our upcoming trip to Saltspring, another Gulf Island.

It really did feel like walking on the moon in some places.

Do you see the face in this photo? 😑

Unbelievable sunsets!

Of course, a wonderful visit with one of my dearest friends was the biggest highlight. I’m not sharing details about that though – the less said the better. I’ll just say we earned our camping battle scars. 🤕🤣 😏

I’ve decided to stop being a sugar cookie (you should listen to this if you haven’t yet) and push myself beyond the very careful parameters I’ve been living in since my diagnosis, out of anxiety of causing a flare or exacerbating symptoms. I’ve been reluctant to make plans, to put too many things on the schedule, always feeling the monster lurking in the background, waiting to attack.

Truth is? Since I’ve been pushing myself to get my butt out of bed in the morning despite the pain and fatigue, I’ve felt better and better. Once I get going, I’m distracted from the awful ache and I get focussed on getting things done. I tell myself to get out in the garden just for half an hour every day, to do some light weeding and pruning, seeding or harvesting. Almost always I end up out there for at least a couple of hours, getting steps in, bending, stretching, reaching and using this body of mine. It may be a tad defective, but it still works! Use it or lose it, right?

I may have overdone things by going on three rides at the fair with our youngest – the monster didn’t like that and symptoms have creeped in again. Whatever. So worth it.

Like Nike says – just do it.

❤️ Amanda

awards, nominations, challenges, chronic illness, Health, life, MS, writing

50 Word Thursday #3: Relapse

I’m trying something different this week, in an effort to kickstart my fiction brain. I’m joining the 50 Word Thursday challenge hosted by Tales From the Mind of Kristian and Teresa at The Haunted Wordsmith. Thanks to both of you for hosting this, it was a great simple challenge to stretch my writing muscles. If you haven’t checked out their blogs, head on over for some great stories and writing challenges.

The rules
1) Completed piece must be in multiples of 50 words – maximum of 250 words. Anything is acceptable – poetry, story, anecdote.
2) There will be a photo and a random phrase that I will take from the current book I am reading – you can use either or both
3) Please pingback and tag 50 word Thursday, so I can do a summary on the Thursday morning. You can either put your piece in the comments on this post or do a post of your own.

‘Although it was a simple thing to be doing, something strange was happening.’

– Paulo Coelho – The Valkyries

Relapse

She stepped into the dark alley for a minute, leaning against the cool shade of the building. She closed her swirling eyes and exhaled heavily, then inhaled a slow, shaky breath. Her legs sagged then collapsed under her, the high-pitched screaming making her moan and stuff her fingers in her ears. Dropping her head on her chest, she squeezed her eyes shut to hold back the tears as the nausea roiled in her empty stomach. The vibrations started from deep within, travelling up her spine then out into her limbs until her teeth chattered. How would she get home?

100 words

❤️ Amanda