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: strange symptoms
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
Not all hugs are loving: MS awareness
It starts with a stitch
A few deep breaths
Then you’re knitting my ribs together
With barbed wool
The front
Then the back
Swirling into my abs
Then my lower back
A corset of pain
The cat the cow
The cat the cow
Stretching every way for relief
Breathe
Distract
It’s just a physical thing
I hug myself hard
To try to get you to let go
Nothing helps
Just breathe
I’m writing this as I’m experiencing a common MS symptom, known as the ‘MS hug”. I’ve always been a hugger but this is not the kind of hug anybody wants to experience. When people refer to multiple sclerosis as a MonSter, it’s for good reason. It sneaks up and attacks when you’re at your weakest.
I’ve been fighting the cold from hell, downgraded from the flu thanks to the infrared sauna. I’ve also been living through a bathroom renovation which has been more stressful than I anticipated. Yeah, I’m a dumb ass. No actually, it would have been less stressful if I had managed the job myself. Okay, yes I’m a control freak and a perfectionist. But if you want something done right, you might as well do it yourself.
So – stress. The worst enemy of anybody with a chronic illness. Hence, the MS hug and an increase of all the other symptoms that make me feel like Beetlejuice in that electrified way, minus the energy.
Good times.
Just breathe.
❤️ Amanda
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
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 