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.
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
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.
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
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. 
The journey to diagnosis: Why so long?
I want to talk about the journey to ms diagnosis. For some, the trip is brutally short. Bam! They wake up and their whole left side is paralyzed, or they’re blind in one eye. Terrifying. No question that any person would head to the hospital, or at least the doctor and they would be taken seriously.
Usually, a trip to the ER would mean an MRI, possible lumbar puncture (sooo glad I avoided that!) and subsequent diagnosis of multiple sclerosis. Some get picky and call it CIS (clinically isolated syndrome) until the monster rears its ugly head again, hence the multiple in multiple sclerosis.
I suspect many people in this position start connecting the dots of other strange symptoms they’ve had for years, once the inciting incident of the diagnosis journey appears, with the exception of those diagnosed very young, of course. I can’t really speak to that though, because that was not my journey.
What about those who present with weird virus-y symptoms?
The first episode of fatigue, brain fog and vertigo when I was 22, had me sleeping in the back of my orange Westfalia on the streets of Puebla, Mexico, alone, peeing in the sink for three days. I figured it was a strange Mexican virus – thankfully not from Montezuma!
The second incident two years later, in Lagos, Portugal, I was stuck in a tent in a cinderblock wall campground, with stereos blaring on every side, peeing (sometimes unsuccessfully) in bottles, in front of my boyfriend. I knew then he was a keeper! 😊💕 Okay, bladder issues are certainly an ms symptom but enough about urine!
I had one more relapse the following year, during my final teaching practicum. The monster’s timing is exquisite. The doctors that I saw during these times, in the early 1990s, checked for parasites and infections because of the travelling link but when they found nothing, they shrugged and pushed me out the door.
Then, the monster slept. With the exception of some ear-splitting tinnitus when we lived in New Zealand which was ascribed to stress (believable as we were living on a student’s income halfway around the world with a newborn), I had no relapses for about 13 years.
After the birth of our third child and subsequently returning to work part-time, I started having these weird ‘blips’, that I again thought was a virus. Pretty soon, I realized it was hitting me every six months or so, knocking me out for longer each time.
There was no paralysis. No blindness. No alarming symptoms that justified an emergency room visit. Just an exhaustion that felt like the power of gravity had increased ten thousandfold, a weird bubbly feeling in my head and an all over body ache that made me feel like I’d been poisoned.
I saw so many doctors during this time, and every single one of them listened to my symptoms, frowned, shrugged and told me to stop working so hard. Or maybe I was depressed. Or it was just a virus. Or it was idiopathic. That last word, meaning ‘they just can’t figure it the hell out’ was said by a very tall, male doctor looming over me in his office, forcing me to crane my neck to look up at him. The subtext of his message was ‘get over it, lady’.
Two problems
I have two problems with this. First, the number one symptom of ms is fatigue, which was my number one symptom. Also, I live in Canada which has one of the highest rates of ms in the world (MS Society of Canada estimates 1 in 340 people), yet NOT ONE of the 15-20 doctors I saw ever mentioned it.
I don’t think this is solely an issue related to the difficulty of diagnosing multiple sclerosis because it is such a misunderstood, unpredictable, individual disease. It’s a women’s health issue generally. I have heard so many stories about women’s health concerns being dismissed or downplayed or worse, drugged by overworked, distracted doctors.
Why is this? Do doctors really think women have nothing better to do than come to their office to ‘whine’ about something that’s ‘all in their head’? I’ve gotten equally dismissive treatment from both men and women doctors, so it’s not a patriarchal problem. It’s as though those that enter the hallowed halls of physician-dom are doomed to condescend to women, believing they’re choosing to spend their lives pretending to feel like shit, just to get attention.
I never watched the Golden Girls, but this clip explains it brilliantly.
You go, Bea! I would like to go back and have it out with some of the doctors who made me feel ashamed and ridiculous for pursuing answers when I knew something was wrong.
Conclusion
I am sharing my personal diagnosis story today because awareness is still so lacking about this ugly disease, despite how common it is. When I was undiagnosed, I searched all over the internet for people sharing stories like mine and found very, very few. Also, I think women need to support each other in managing their health, and that starts with conversation.
If you or anyone you know is experiencing strange symptoms, don’t ignore them. Advocate for yourself, you know your body better than anyone else can. Don’t let doctors blow you off and don’t stop searching until you get the answers you need.
Doctors hate it when you use ‘Dr. Google’, and you do have to be really, really careful. But until we sort out a healthcare system where doctors aren’t working on an assembly line, it seems to be the most knowledgeable, and least condescending doctor around. No offence to any of the doctors out there with integrity, I just haven’t met any of you.
Do you have a crazy diagnosis story? Please share, I’d love to hear from you.
❤️ Amanda
By the way, it was a naturopath that finally listened to my story and first mentioned the words multiple sclerosis. I was finally diagnosed 23 years after my first relapse.
Walk a Myelin My Shoes 