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.
Tag: writing
Endings and beginnings
He’s off. Settled. Installed at university – across the country.
I’m always a proud Mama, and never more so than when my son was accepted into one of the top universities in Canada. The fact that it’s four provinces (4029km/2504miles) away, is something I have been digesting, with a smile on my face, for months.
I’ve just returned from a four day trip to get him organized and set up in residence. It was one of the most wonderful, but more emotionally challenging experiences I’ve had in motherhood.
He’s doing exactly what he should be doing, moving into the next phase of his life with the skills, values and independence I’ve worked to instill in all my children.
But hugging him goodbye and having to leave him there, no matter that I know he’ll do great and be just fine, was almost as hard as when I had to leave him in the OR for surgery on his broken leg when he was six.
I sucked it up (mostly – poor Uber dude) until I hit my hotel room. It was only in writing out all the fantastic details of the day in my journal that I got a handle on the Snuffluffagus tears. Writing is therapy.
I flew out so early the next morning, I was hardly conscious. I was one of the last to board the plane, psyched to have an aisle seat near the front. The middle seat was empty and I thought I had it made, despite the huge manspreader in the window seat. (wtf is up with that???)
Then a young mother boarded with her 9 month old baby boy, and smiled at me apologetically. I jumped up to let them in, remembering well my many trips with young kids and the obvious looks of horror from fellow passengers, then realized the father was there too. I offered to move but they said he was in the middle seat at the back of the plane. Yeah – not happening.
I was happy to help her out and thrilled to hold the little monkey. He was such a happy guy, with a shock of blond hair, huge blue eyes and a ready smile.
Then a three year old boy walked up the aisle and spotted the baby. He stood and gazed at him with such fascination for ages, it was adorable.
Do you see the pattern here? Okay, Universe!!!
I didn’t let myself say the usual, ‘it goes by so fast’, ‘appreciate every moment, even the most frustrating ‘, ‘you never get this time back’.
I didn’t want to be that person.
It’s all true though, but you can’t really understand it until you live it. Like everything in life.
I lost it a bit a couple of times on the way home, but walking up to the house was really weird. He’s not just out, he’s away.
So sniffling away in my bedroom, I pulled out my phone, and there was a text from my boy.
I thought you should know, I had tomatoes for lunch.
😂😂😂 Thank god for technology.
And perspective – he’s only away at school, he hasn’t moved out! Home for a visit in two months!
This is not the end of anything, it’s the beginning of everything.
❤️ Amanda
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
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.
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 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.
❤️ Amanda
Book Review: Cull by Tanvir Bush
I’m always on the lookout for new authors that inspire me. This book appeared in my Bookbub offerings in February, and I was immediately interested, for obvious reasons. The title and the cover speak volumes. (see pic below)
It’s disturbing to hear so many stories about disabled people being further victimized by the attitudes and prejudices of the healthy. When the government jumps on board to legislate discrimination in the guise of rooting out the lazy, lying abusers of the system, the results are truly frightening.
Are there people that abuse the welfare system? Absolutely. Should all people who are already dealing with the challenges of chronic disability live in fear that they will be accused of ‘milking the system’? I won’t answer that, but we know that it happens all too often.
When I first had to give up teaching and go on disability, one person said how lucky I was and that I should go surfing. Um…okay? It’s ignorance, a blissful ignorance of not knowing what it feels like when your body betrays you and all the things you have taken for granted, are taken away. I wish everyone such ignorance.
For those living that reality, further victimization through government policies is very much part of the whole journey. I am fortunate in Canada to have been supported through the process but I hear horror stories from people in the States and the UK about fighting for benefits and not having enough money or proper insurance to afford medication or adequate healthcare.
We know the effects of stress on the human body, and on chronic illness in particular. I can’t imagine living in that kind of fear day in and day out. Tanvir Bush has taken this situation, and in a brilliant satire, given the power back to ‘the crips’. Her protagonist is blind, as is she, and she has the most amazing guide dog, Chris.
Her writing is exceptional, the way she describes the world from the dog’s point of view is brilliant, and overall this book highlights so many important facets of a world that is disturbingly similar to ours. You want to read this book! Amazon links below.
⭐️⭐️⭐️⭐️⭐️
Website for Tanvir Bush and The Holey Vision Blog
❤️ Amanda
Walk a Myelin My Shoes 