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: relapse
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
Pain and anxiety
I had another post scheduled for today, and then this happened…
My body has been happier for the last month or so than I remember it feeling for a few years now. My mom and I had a mostly wonderful outing to the theatre today(Saturday). We watched an incredible tribute to the phenomenal Leonard Cohen by Les Ballets Jazzs de Montreal.
Normally I print the tickets at home but for whatever reason I chose ‘pick up at box office’. We had to wait outside in the beautiful but freezing cold day (for Victoria standards – we’re wimps compared to most Canadians 😉), and by the time we got into the lobby, the MS monster was in full force.
Right or wrong, I resorted to a glass of wine which always calms the shakes and the nasty. Despite the plastic cup with a lid, I spilled all over my light purple pants. Nice. Of course, if I’d been wearing black it wouldn’t have happened. 🤣
Anyway, the following spilled out of me a few hours after I got home today. I wanted to share because I imagine it’s not an uncommon feeling. The pain’s bad enough but coupled with the anxiety of whether it’s signalling a relapse makes it almost unbearable.
I’m going to assume that when I wake in the morning, after this post is published, the monster will have retreated again and I will keep on keeping on. To all the warriors out there, I send you courage and positive vibes in the battle.
❤️ Amanda
The pain heaves my stomach and sparks my anxiety.
It’s like too much blood in my foot, pushing out against my skin.
The foot wants to fold in half too, a taco of toes.
I breathe out against the pain, hoping it’s that my shoes are too tight.
The pain gets worse lying in bed later, legs bare, unconstricted.
There’s a python in my leg, squeezing, squeezing until I can’t breathe.
I move the leg to dispel the pain but it follows me, hungry.
I reprimand the foot.
It’s the misfiring of neurons, it’s not really happening.
A futile attempt.
The pains roars louder.
I swallow the nausea, blink against the headache.
The pain runs up and down my leg, into my arm, my jaw, my shoulder, my back.
It’s everywhere.
Controlling my body and my mind, I’m lost in the misery.
Then the anxiety yells above the pain.
Is it happening?
Will I be down for the count?
Is it going to take me out for good this time?
I want to cry.
I want to hide.
I want out of this body.
I feel the grimace on my face and try to correct it with a smile.
A smile marinated in pain, a crone’s smile.
My face slackens, my mouth sliding down my chin.
The foot is sharing, pain travelling up my leg into my hip socket.
A live wire sizzling its anger from the inside.
My eyes squint, I swallow the lump of tears, blink away the moisture.
Crying won’t help, it makes the headache worse.
Lie still, lie still, breathe it away.
Shoulders tense, jaw clenched, abs contracted to hold it down.
Now the python’s in my arms too, too much blood in my whole body.
A burning tingle numbing my body and mounting my panic.
It circles my ribs.
They click together, compress my lungs.
I take a long, slow breath but my lungs won’t fill.
My tongue tingles.
I swallow the nausea again, the bile crawling up my throat.
The wrinkles deepen on my face, crevasses of pain.
The pain shoots down to my big toe, throbbing its nasty foulness.
The python circles my throat and I choke on my saliva, coughing and sputtering.
I hold my neck, coaxing the muscles to relax, the python to release its grip.
The panic screams but I have no time for that right now.
I need to breathe, to relax my body before I turn to stone.
But if I relax, the python will take over, squeezing me until I burst.
Nothing makes sense, the pain clouds reason.
No focus except stopping the python, controlling the panic.
The worry that it’s not here just for tonight.
That it wants to settle in for awhile.
Stopping my life again. 
Walk a Myelin My Shoes 