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.
We made it the whole winter with nary a sniffle, then the first day of spring our eldest woke up with the flu. Then our youngest succumbed. It’s a nasty one too, (what flu isn’t), fever, dizziness, headache, nausea and a deep, retching cough.
Having MS, I’m pretty paranoid about getting sick. Simply because what could be a three week ordeal for a healthy person, could drag me down for months. So, I followed my Tips for staying healthy in cold and flu season. Oh, and ate LOTS of garlic! 🤭
Still, the achy, weak fatigue descended. Although, it was difficult to tell if that was the flu because it’s pretty much how I feel all the time. It was when the cough appeared, painful as a badly scraped knee, accompanied by a killer headache that I knew it got me.
So, that’s when I followed my ultimate tip, and got myself into the infrared sauna. I stayed in for thirty minutes two days in a row, and while I have a cough and a bit of a headache, I believe the heat of the sauna staved off the worst of it. It’s like having a fever to kill off the nasties, without having to go through the nastiness of a fever.
A lot of people with MS suffer from heat intolerance, and I’m one of them depending on the day. The kind of heat produced in an infrared sauna is different though, not at all like the dry heat of a traditional sauna, or the sun. I find that if I don’t do it very often, it doesn’t affect my symptoms at all.
And if it killed off those flu bugs before they took a real hold, it’s definitely worth it. Mind you, my other theory is that my immune system is so overactive, that it might not have got me as badly even without the sauna.
Other MSers, do you find that don’t get sick as often or as badly since you had MS? Probably it’s like everything with this crazy disease, different for everyone. Well, I hope none of you have been ravaged by the flu this year, and if you feel something coming on, I strongly urge you to find an infrared sauna near you.
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.
You never know how strong you are until being strong is the only choice you have.
Callie’s grateful for her new sleeping platform in the garden.
The month of Canadian Thanksgiving. So, because there are too many things going on right now for me to focus and write an earth-changing blog post😉, I am going to list some of the things I am grateful for:
Our youngest child’s 10th birthday tomorrow. She’ll be getting her ears pierced, just like I did on my tenth birthday, as did her sister.
Her role as a Party Child in The Nutcracker with the Royal Winnipeg Ballet!
Our oldest daughter thriving in the music program at college.
Our son blowing our minds with his knowledge and dedication to learning all about trading – at 16.
Finally making some progress towards our bathroom renovation. It has been years since we could use our bathtub – long story.
Finishing my first draft!!! With thanks to C.S. Lakin at Live Write Thrive for providing the free resources that helped make it possible.
Finding this story workbook tutorial by Stephanie Morrill at GoTeenWriters.com (yes, I’m in denial – don’t bust me!) that makes me feel like I have a direction for a second draft in time for Nanowrimo.
The monster being more or less quiet – or maybe I’m just getting used to it. At the very least, I’m not letting the MS control me like it used to.
There is so much to be thankful for! Mostly, I am grateful to my family and friends and all the amazing people I’ve connected with since I started this blog in June.
I’m just going to leave this lovely lady right here, in the spirit of the season. Check out the dude on her stomach!!
Any writer is a reader first, and I’ve always been an avid reader. However, when it comes to which books I read, like most things with the monster there are two parts of my life: before relapse and after relapse. Having RRMS, I’ve obviously had many relapses. I’m talking about the life-changing, brain-frying relapse that hit me in December 2015, before I had a diagnosis. That story is here. I’ll call that relapse Ralph.
Before Ralph, I was voraciously devouring the classics and literary fiction that make up my husband’s extensive book collection. He once dared me to read Clarissa by Samuel Richardson, a wee book of 1536 pages entirely written in letter format. Epistolary is the technical word, apparently. Sounds like a virtual urinal 😜. Clarissa ended up being one of my favourite books of all time. Don Quixote by Cervantes is another that seemed daunting but I loved so much I will make myself read it again one day.
Despite having a degree in French Language and Literature, I always hated writing and avoided university courses that had an essay component as much as possible. Give me a factual test any day, don’t ask me to articulate my thoughts in writing. I was wracked with paralyzing self-doubt that I could ever adequately express the thoughts bouncing around my skull. Or that the thoughts were even worth expressing.
When I was on maternity leave with our third child in 2010, I started my Masters and one of the first courses was statistics. I hear the collective groan, but I surprised myself by really enjoying it. Writing the initial essay was the first time my thoughts stopped bouncing and ordered themselves into words, then paragraphs, then into the very first A+ in my life. More importantly, the professor complimented me on how clearly and succinctly I had reasoned my arguments. Amazing what a difference a few words, and twenty years of experience, can make in a person’s self-perception.
Fast-forward to 2015. I hadn’t yet met Ralph, but I had been relapsing every six months consistently for five years, luckily always bouncing back completely. One of my favourite memories of my career is lunchtime in the staff room with certain colleagues. You know, the ones who speak their minds and the subject matter sometimes gets a bit bawdy but is always hilarious? Many lunch hours sharing stories and loud laughter with people I still consider dear friends, even if we hardly see each other.
Anyway, I shared some (not all, I was a grade one teacher, for Pete’s sake) of the more adventurous, sordid tales of my adolescence in the 80s, as well as the story of how I met my husband, which was also in the 80s as it happens. I had several people tell me, sometimes after staring at me wondering how I’m still alive, or with hearts in their eyes as I recounted my personal love story, that it sounded like a movie or I should write a book. I thought little of it, until that summer when… wait for it… I had a dream.
Sounds stupid, I know. The first time I dreamed the title and the first line, I woke up and thought, weird, and moved on. Then I had the exact same dream the very next night. Always a believer in signs, I opened up a blank document and typed that first line. For the next six weeks, the story wrote itself, around 80,00 words, my imagination filling in the many places my memory couldn’t locate. It was an unreal, life-changing experience.
That project sat on my iPad until the following September, when the residual effects of Ralph’s visit forced me to face the fact that I could no longer teach. Reading has always been a loyal companion but I found that not only did the cog fog make reading really difficult, even holding a physical book took too much energy. Thank goodness for digital books and Bookbub!
All my brain could handle at that point were romance novels, and I had to face my own snobbery to the whole genre that had me, with the exception of a brief Danielle Steel phase when I was 18, too embarrassed to even go to that section in the library. There is a reason that romance represents such a large proportion of all books sold. People, okay mostly women, love a love story. For obvious reasons.
Spending so much time reading, I started noticing the formulaic nature of a lot of the books, not to mention some atrocious quality issues and that lead me to beta reading. I joined some groups on FB, read some interesting manuscripts, and finally felt brave enough to share parts of my manuscript with a few people, including one full exchange. I valued the feedback and wrote several more drafts but I really suck at rewriting. “Killing my darlings”? Yeah, I suck.
What sucked even more, was that even though I was proud of having written it, when I asked myself “What is this book actually about?” You know, that rather important question you should ask yourself BEFORE you write 80,000 words? I had no idea, really, and ‘it’s the story of how I met my husband’ is just, well, blah. While I will always love reading that story, and maybe someday I will rework it so it actually follows proper novel structure, for now it hibernates.
I’ve started a few other projects since then, but I usually get to chapter 7 or 8 and it fizzles out, or my brain decides to start a different story. My latest project has made it to chapter 11 because I finally decided to try outlining, and found some awesome books and resources from C.S. Lakin at Live, Write, Thrive. Thanks, Suzanne!
The other tip I have been making myself stick to is to Just. Keep. Writing. I’m a terrible perfectionist and will reread the same chapter 16 times, trying to fix it but unsure how. So, I’m not letting myself look back more than a few paragraphs each day until I finish the first draft.
To keep up the forward momentum I signed up for Camp NaNoWriMo for the first time starting July 1st, with a word goal of 30,000. It is really helpful to have a virtual writing group that is all working towards a similar goal. So far, I have written over 9,300 words and am enjoying getting into a more regular writing routine.
Launching this blog last month was a huge step in getting over the phobia of sharing my writing. I started this way back in November 2016, but didn’t have the nerve to actually share it until June 2018. Imagine my surprise when I finally launched and the Bad Writing Police didn’t show up at my door to confiscate my iPad. People were more supportive and encouraging than I could have imagined. Not to mention that I picked up almost 100 followers from that first post! Mind. Blown.
I thought I would be tapping away and sharing in solitude, happy if even one person from my personal life bothered to read my ramblings. And frankly, even if nobody followed I would keep going. That’s a lie. Knowing my words might have meaning to even just one other person is huge.
In light of my commitment to myself to #facethefear, in September I’m going to a writing retreat. I am equal parts excited and terrified. Sharing my writing with people face to face? Ack! I’ll let you know how that goes, it should be a great adventure.
Any other writers out there? I’d love to hear your stories. If you have a phobia about writing, I strongly encourage you to give it a try. Whether you choose to make up stories or write down some of your own, there is something magical that happens when you silence that inner critic and let your words flow; it allows you access to a part of yourself that perhaps has been hiding for too long. You don’t have to share it, just write it. You may surprise yourself.
Wow, this was a long post. Thanks so much if you stuck with me to the end!
Have a great week everyone!
❤️ Amanda
** A book series I recommend for romance, vicarious travelling and delicious food descriptions, is Laura Bradbury‘s ‘Grape’ series. Laura understands the Spoonie life better than anybody. She had a liver transplant last year for a rare, life-threatening autoimmune disease, and is making the most of her new lease on life. She recently released My Grape Paris which brought me right back to the six months I lived in Paris around the same time. They have villas to rent in France, too!
Walk a Myelin My Shoes 