Toot toot! I normally only post once a week, but I had to share. Despite that crazy old gal Life tossing all sorts of obstacles in my way this month, I managed to succeed at the word count goal I set for myself for Camp Nanowrimo.
I had no idea how many words I would need to finish my current work in progress. That’s some weird writer science that writers can decide how long their project will be and actually hit that target. I’m still in the amoeba stage as a writer so I had no idea.
I wanted to set a manageable goal to increase my chances of success (lower that bar, baby!), so instead of the suggested goal of 50,000 words, I set mine for 30,000. I didn’t manage to write every day, and I had to pull a late-night writing sprint last night to give myself a real shot, but I did it.
I’m almost finished the first draft, and I’ve gotten into a more regular writing routine. I’m excited about the shape my project is taking and I’m motivated to get this puppy done by the end of August. That’s all I hoped to achieve and I have to say it feels pretty damn amazing!
Other exciting news that happened almost at the same time – I got my 150th follower! I had set a flexible goal of seeing if I could reach 150 by the end of the summer, to be there already made my day. Thanks incurable dreamer for making that happen! You should check out her blog, she shares some amazing posts.
Thank you so much to all my followers, anyone who reads a post, and those who take the time to comment. I was so afraid to dip my toes in this pool, and it’s the best thing I’ve done for myself in years. I have already met amazing people online that I consider friends and it’s cathartic to share this journey that used to be so isolating and lonely.
Mille mercis! Danke Schon! Muchas gracias!!!
❤️ Amanda
EDIT: Don’t ever hit the disconnect on your Facebook profile in your wordpress account, even though wordpress can no longer publish posts to your profile. I lost almost half my followers by doing that, and am slowly creeping my way back up. 😩
Walking the tightrope of ms relapse prevention and symptom management while juggling life stress, heat intolerance, sensory overload, the ogre of depression and its craptastic partner-in-crime, anxiety.
We spent an incredible weekend in Vancouver, going to see the Psychedelic Furs, a band I started listening to in 1985, the year I met my husband. Nostalgia aside, they were maybe not the most exciting live band but we had a whole second show play out in front of us. It ended with a very eccentric, obnoxious man throwing his drink in his ex’s face, spraying all of us nearby. Oh, the drama.
Going to Vancouver usually stresses me out with all the traffic, the dreaded George Massey tunnel, the smells, the noise, the people everywhere. The chaotic energy of a big city is exhausting but it’s worth it to spend a night away watching live music with my husband.
This time traffic was mellow, even on a weekend at the height of summer. Everything fell into place beautifully everywhere we went so there was little stress and the monster was quiet so I felt pretty great, all things considered. Happy hour cocktails at the Cactus Club may have helped a bit, too. 🍹
Even the drive back out to the ferry, because we left the city early and went to check out the new mall, Tsawwassen Mills, was a fun, stress-free adventure. I’m not a mall rat and typically think a mall is a mall is a mall but they have done a very thoughtful job of incorporating First Nations artwork and unique elements that make walking around the ginormous space a mall experience unlike any I’ve had before.
First Nations metal wolf sculpture
Part of the joy of being an island-dweller is the hurry-up-and-wait experience of riding the ferry. I’m mostly patient and can amuse myself pretty easily but we all know how hot this summer has been in the northern hemisphere. Sitting in a truck on the end of a man-made jetty covered in concrete, full of metal cars and huge semi-trailers is a special kind of torture for every traveller.
Heat sensitivity is a common symptom of multiple sclerosis. Being the annoying mofo that it is, my body can tolerate heat or cold just fine most of the time. Until it suddenly can’t and all hell breaks loose. I think my thermostat’s broken.
So, my sweater is hanging off the sun visor shielding my body from the sun, doors and windows all open to catch the cool ocean breeze, all is well. Then the wind dies, the sun’s still beating down on me through the side window and a mushroom cloud of heat wafts up from the pavement.
Knock knock. Who’s there?
Hot, too hot.
Brain frying, can’t think
Panic starts, ears ringing.
Hello Anxiety.
Anxiety is another special gift the monster has given me in the last few years. It is closely related to depression in that they share the all-encompassing feeling of doom. The only thing that makes it controllable is knowing that it is a result of the damage in my brain, it is not real.
On the tarmac, I ended up going into the relative cool of the marketplace, to be faced with all the other overheated humans seeking relief.
Hello Sensory overload.
Tune it out. Blinders on. Focus on stationary objects.
Jewelry. Oh, pretty. Slowly inspect.
Cool down. Calm down.
Sea salt scrub. 50% off. Sure!
Hot, too many people.
Stuffy. Loud. Too much.
When I got back to the car, we had the bright idea of using the air-conditioning. Oh, sweet relief! I don’t love idling a car for any longer than necessary but when it comes to being either environmentally responsible or saving my brain and body from total meltdown, I will be unapologetically selfish. Please remember this if you’re tempted to judge someone for idling their car in the future. It can be a case of life or death for some people in this kind of heat.
People always worry about the dogs but, you know, humans.
Just after we boarded, a camper van got stuck partway on to the ferry, delaying the other cars and ultimately, our departure as they eventually had to back off the ramp. I could feel the spinny, bubbly feeling beginning again in my head that happens when my thermostat’s awry and I overheat. Then, anxiety prickled its knives that I was stuck in this hot car with no air moving for who knows how long and idling your car on the ferry isn’t an option, so no air conditioning.
Sensory overload or not, up I go just until the boat starts moving. Normally we stay in the car the whole time to avoid the crowds as I’ve always had enough after two days in Vancouver but again my thermostat was in control. I go up the stairs straight into the line-up already building for the buffet.
I quickly veer myself into the small hallway by the chief steward’s office and prop myself against a window, watching the hordes of people boarding and lining up. I try to enjoy the enthusiasm of the young Japanese tourists on a ferry for the first time. Their excitement is adorable and appreciated.
Then they swarm around me to look out the window and take pictures. Of the ugly piers.
Over my head.
Okay. Breathe.
They’re gone.
Another group.
Wait. Breathe. The ferry will be moving soon.
One window further over. Look out at the water.
See the diamonds dropped by the sun
Sparkling all over the water.
A bird, diving.
When will the boat move?
Look back at the growing noise.
Buffet line has sealed off my exit.
Swallow down the fear.
Irrational.
Line will move. Boat will move. Time will move.
Please move!!!
Breathe.
Just breathe.
I am only grappling with one tentacle of the octopus of anxiety. Many people are paralyzed in their lives, unable to function because they are crippled by the many facets of this mental monster. Yet again, there is still such a stigma about mental illness. I wanted to share a small glimpse into what the experience is like for me, just to open the discussion and share information to spread awareness.
Thanks so much for stopping by. I always appreciate any comments or insights about my posts but if you’ve taken the time to read it at all, I am honoured, and I appreciate it so much.
Last summer was the first time since adolescence that I experienced true depression. Luckily, this time I had the knowledge, wisdom and support to see it for what it was.
When I was a teenager at boarding school, I told nobody and suffered in silence until I acted out in despair and swallowed a handful of Tylenol. Nobody found out about that either. I wasn’t trying to kill myself, just trying to make the pain stop.
That phase was an exception, I consider myself blessed to be born with a generally happy disposition. As a child, the world was alive in my imagination; not only my dolls and teddy bears were alive but all living things fascinated me and talked to me. Seriously. Okay, I talked to them but I swear they talked back!
I still have the habit of talking to myself and objects around me. As a teacher, I would sometimes have parents waiting outside because they thought I was in a meeting when I was just having a grand old chat with myself. I usually have a smile on my face and I genuinely enjoy interacting with other people when I’m out in the world.
We all have days where we feel ‘blah’, the sky not so blue, the flowers not so bright. This is the necessary balance to life because if we don’t experience the lows, we can’t fully appreciate the highs. The idea of living in a utopia where nothing bad ever happens and everyone is happy all the time is appealing but unrealistic. It would be nice if we could tip the scales just a bit further in the positive direction somehow though, wouldn’t it?😉
Depression is an entirely different ogre. Depression sits in the pit of your stomach, chained to your heart, sucking all motivation and positivity from your thoughts.
Depression feels like you’re drowning in front of a crowd but no one can see you
Finding motivation and staying positive are constant challenges with any chronic illness already. The constant weight of fatigue multiplied by the pressure of depression starts to make me feel claustrophobic in my own body. Um…yeah.
I had not planned to post about depression this week, but IT’S BACK! The hard kernel of dread and doom has been festering there in my gut, as I’ve tried to control my stress, get lots of rest, eat well, exercise, meditate, communicate, blah, blah, BLAH. The cloud grows.
My question is this: why do my physical symptoms ease in the summer just for the mental monsters to come out to play? It would make more sense to get depressed in the winter when the skies are grey and the fatigue and nerve pain are at their worst. Easier to justify staying in bed with the covers pulled up to my chin then, too.
When the sun is shining, there are vegetables and plants to be tended, not to mention children(thank goodness they’re older), so guilt pokes out its claws too.
What’s there to be depressed about, for Pete’s sake? Stiff upper lip, role model, it’s okay to feel it but you still have to get on with life. All those negative inner voices that I usually scoff at, get amplified when this bugger shows up, too. Good times.
Does this happen to anyone else, this summertime depression?
Awareness
Depression is the most prevalent invisible illness in our modern world, affecting every echelon of society, yet the stigma remains. People suffer in silence and isolation and/or quietly accept the next prescription for anti-depressants, only admitting to their closest circle, if anyone, that they couldn’t handle the darkness anymore.
Depression is a common symptom of multiple sclerosis so it’s a double whammy of an invisible illness. I am fortunate to have a wonderful partner that wants to help and tries to understand what it’s like to live in my body. I feel the frustration of his helplessness that there really is nothing he can do beyond being the caring, attentive, goofy guy that he is. The best I can do is help him understand.
Analogies seem to be the most effective way to help people understand an experience they haven’t had. So, I started thinking about ways to describe depression. My depression, being usually (god, I hope so) short-lived, is the Lite version compared to what many experience day in, day out their whole lives. So I’m sure there are many better analogies out there, but these are the ones I came up with.
Depression is like:
– swallowing a cannonball that chains itself to your heart then leaks radioactive material that poisons your thoughts.
– alternately wanting to burst into tears, shriek at the sky or throw up every second even though your life is perfect.
– Voldemort sent all the Dementors inside your body where they are multiplying as they suck out your soul.
– you’ve woken in a nightmare and no matter how hard you slap yourself, you can’t wake up.
– being in a Dali painting, sliding off the surface of reality. For me, time is a huge factor because now that I’m not ‘working’, I see all the things that need doing, all the time, but my energy doesn’t measure up to my desire to get shit done. Then, depression sucks out the motivation too.
– finding that patch of quicksand I searched for as a kid, wondering why I ever wanted to know what it felt like.
– stepping in shit, knowing that you’re standing in shit, seeing the clear path to get out of the shit, and not having enough fucks to give to bother.
– being Wile E. Coyote when the anvil ends up on his chest.
How do you describe depression?
Please share your thoughts and ideas in the comments, I’m sure there are many of you that have better analogies.
Helping other people understand using examples they can relate to is a simple way to build awareness and end the stigma.
And don’t forget the very important lesson of Eeyore:
Have a wonderful week, everyone! Thanks so much for stopping by!
That’s 1440 minutes every day that each person has to make the myriad of choices, big and small, that we all face daily.
Ultimately though, the one choice that will really make a meaningful difference in this world, both for individuals and for humanity as a whole, as trite as it may sound, is LOVE.
If we can tap into that emotion every day, especially the dark days, and more importantly show it in our actions, the haters can’t win.
I was lucky enough to see Rent onstage in Vancouver twenty years ago, two years after its debut. Rent is a rock musical written by Jonathan Larson, who died suddenly at 36, the morning of its off-Broadway debut in 1996. Talk about no day but today. RIP Jonathan.
I listened to the soundtrack on my road trip last month because the Victoria Operatic Society is performing the musical this fall. My nine year old will be disappointed there are no suitable roles for her. ☺️
Rent is loosely based on the opera “La Bohème” by Puccini, which concerns starving artists in Paris in the 1840s, facing the tuberculosis epidemic. Rent places the struggling artists in New York City in the 1990s, facing the AIDS epidemic.
In 2018, the messages of both these great works are more important than ever as the world faces the trumpidemic that threatens to tear apart the United States. Is that melodramatic? Maybe. I hope so.
As a white, cisgender woman growing up and living in a middle class neighbourhood in Canada, I have been spared the horrific abuse I see hurled at the marginalized, though even as a young girl it hurt my heart to realize humans could treat each other so badly.
Now being a member of another marginalized group, the disabled, I have an inkling (the teeniest for sure) of the challenges so many people face in being accepted and valued in our society.
Diversity, tolerance, love, friendship, hope, despair, addiction, disease, discrimination, the class divide and the death of art – timeless themes that we human beings should have a better handle on by now.
Instead, a Muppet-like wannabe dictator (sorry Jim Henson) a misguided, heartless president is sowing the seeds of hatred, intolerance and bigotry through his ridiculous Twitterganda and isolationism.
The strongest weapon against his particular brand of nastiness, is LOVE. Seasons of love, people, that’s what we need.
No day but today.
Have you seen Rent? If not, I highly recommend! The actual musical is way better but they did a great job with the movie which includes most of the original Broadway cast. It’s on Netflix. 😊
I propose we start a new hashtag movement. It seems the haters and the trolls are the ones who spend time and energy spewing hatred online. Rather than wasting our (precious spoonie) energy by engaging in a useless attempt at intelligent debate, let’s drown them with a tsunami of #fightthetrumpidemic and #chooselove hashtags every time they comment.
In order to stem the tide of ignorance and hate, we have to overcome the apathy, stop talking amongst ourselves and start fighting back. Who’s with me?
Fight the trumpidemic. Choose LOVE!
Thanks so much for stopping by. Have a wonderful week!
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 