This is the start of a new line I’ll be introducing into my Etsy shop. Https://www.etsy.com/shop/damagedgoodsshoppe
This is the start of a new line I’ll be introducing into my Etsy shop. Https://www.etsy.com/shop/damagedgoodsshoppe
While I’m glad to see so many friends and family supporting Bell’s ‘Let’s Talk’ campaign to raise awareness for mental health, I think it’s long overdue time to get real about fact that while awareness is helpful in de-stigmatizing mental illness. It does not fix a very broken healthcare system. Yes, I know the rhetoric. Canada is so great, free healthcare and all that. But <and this is just my opinion> it’s great when you are for the most part a ‘healthy’ person. For the rest of us, navigating the healthcare system with a chronic illness like Multiple Sclerosis is, at the best of times, tricky and underwhelming. However, when you throw mental illness into the mix, it becomes glaringly apparent just how lacklustre our services really are. Firstly, when a person is in crisis, you do what you’ve been taught your entire life to do…which is to seek help. You go to the emerge. Where you are triaged based on need.
Which I understand as the most serious cases being seen first.
So in my last experience, I waited and waited and waited. In active crisis. Which for me, meant I felt panicked and somewhat hysterical.
And they put me to wait in a loud, bright, bustling waiting area for over 5 hours until I approached a nurse and through sobs told her I needed help. She moved me to a stretcher in a quieter hallway. I waited and waited and waited.
After a few more hours, I was seen by a crisis psychiatric nurse and a psychiatrist. I was ultimately sent home (with no follow up) because the psychiatrist didn’t want to ‘step on’ the toes of my illustrious neuro psychiatrist.
Clearly, my crisis had not ended. I ended up seeking help twice more <once through a crisis centre and once more at a different emerge>.
So let’s stop here for a minute.
What could be changed to keep in line with the current fad of progressive mental health Canada seems keen to have?
1. Upon first triage, when I explained that I was experiencing panic attacks and was terrified there are a few different ways that could have been handled:
Option A. A triage system that recognizes mental health. My vitals could still have been taken and when it was apparent that my panic attack was the primary reason for my visit, I could have been triaged to a mental health waiting area. This might look like something on a different floor, with room for privacy and staffed by both nurses and psychiatric nurses. I could have had the psychiatric nurse assess me and then had a psychiatrist who does the rounds discuss with the nurse what the best course of treatment would be. I would not have a psychiatrist who cared more about her career connections than my crisis.
Option B. Upon triage, after taking my vitals and confirming that it was in fact most likely a panic attack that was my primary reason for visiting. I could have been provided with crisis line information and/or a referral to a mobile crisis team or something similar. In my own work experience, I have used a mobile crisis team to come to a school I was at with a young man who needed psychiatric assistance. Often with anxiety disorders, talking to someone who has the tools to walk you through a crisis, is all you need at that moment.
Option C. Would require intensive training for all frontline staff including triage nurses to emergency room nurses to emergency room doctors and so on. I would imagine this option would be highly unlikely. However, it would be helpful for such staff to be experienced in noticing the signs and symptoms of various mental illnesses and being knowledgeable with basic tools such as belly breathing. Furthermore at the point of triage, redirecting patients who have a flu or a cold to walk-in clinics would help possibly reducing the amount of people using the emergency room.
Secondly, family doctors generally are not equipped with the resources to handle crisis situations. And in my case, my doctor has something like 1700 patients. So if in my crisis, I had called to get an appointment to at least know there might be relief in sight, it is unlikely that I could get an appointment within the next two weeks. So this appears to be dead end and not a valid or helpful direction.
Thirdly, the saga with my neuro psychiatrist. You remember him right? The one no one would touch me because of?
I was called for a referral that the psychiatric nurse had put in for a short term psychiatrist.
When I spoke to intake, she said they could not see me because of my neuro psychiatrist.
I asked perplexed ‘even if I’m telling you I don’t want to go back and see him?’ You can guess the answer there.
So my neuro psychiatrist. I left voicemails and emails and was lucky that I had an already scheduled appointment with him the week after my emergency room visit. I saw him for less than half an hour, I gave him notes that I took on my ordeal which I’m sure he never read.
He apologized to hear what I had gone through and recommended that the next time I tried to get off Paxil, he would do it inpatient at Sunnybrook.
I think I guffawed and said I’d never try to get off of it again.
He prescribed my original dose of Paxil and some additional Ativan to get me through, told me to call to update in two weeks and sent me on my way.
Oh and my next appointment is in three months time.
While he is a very highly regarded doctor and widely known within the MS community, is he the best person to be treating me? My anxiety and depression were triggered long before my MS appeared. It appears to me that seeing another psychiatrist is near impossible not to mention that all psychiatrists are OHIP covered, so the wait time for a new one would likely be close to a year. In October, my neuro psychiatrist put in a referral for me to do CBT at a hospital close by. The wait time for that is equally lengthy. So I found a private clinic that offers CBT that is not covered by OHIP and am going to see them next week. It’s expensive and not covered by my group benefits.
During this time, I also had my family doctor complete an application for a private inpatient facility that deals with mental illness and would cost approximately 20K for 56 days.There was a wait time, and thankfully during this time, my Paxil increase has kicked in and I am no longer in crisis so I have deferred admission. I do not want to go to a place that costs that amount of money. I am trying to figure this out on my own before they call me to give me a final offer me for admission.
I don’t know where that leaves me.
I don’t know where any of this leaves me.
I don’t know what my future looks like.
Much like half the Canadians who also live with mental illness.
We are left to navigate this scary and overwhelming path on our own.
So maybe it’s time Bell changes it’s campaign from ‘Let’s Talk’ to ‘Let’s Talk About How We Can Do Better’.
Dear David (from Gerstein Crisis Centre)
It’s taken me four days to finally be able to compose this letter.
Not because I didn’t care to but because I became too emotional whenever I thought about your kindness towards me during my short stay at Gerstein.
You were the first person during my ordeal who did not see someone who was ‘weak’ and ‘needy’ but instead you saw someone who was tired of fighting so hard.
Someone who just needed a safe place to land.
You gave me that.
From the very minute I stood in front of the office doors as a crying hot mess, until we had talked long enough for me to enter a sleep-like.
You threw me a lifeline.
You made me feel heard and understood, and there are not simply enough words in the English language to convey my complete gratitude towards you for that.
So from one panic attack sufferer to another…
In words I know you’ll understand best.
I’ll just say:
I’d lay down in the snow with you, until your panic attack passes. 😊
PS if anyone knows him or how to get in touch with him let me know
That feels more like a year
That will go down as the worst in my life
I’ve lost count of how many nights I’ve woken Joey during the night in a sheer panic
Two emergency rooms
Two emerge doctors whose kindness I won’t soon forget
A private inpatient facility
A crisis line
Two triage nurses
Anyone who would listen
Even the ones that didn’t
Two psychiatric nurses
One psychiatrist who cared more about ‘stepping on the toes’ of my neuro psychiatrists than helping me through a crisis
One night at a crisis centre
One night where I never thought I could ever end up
One staff member who was my lifeline
One 37 year old who needed her mom to get through the night
One nine hour wait in an emergency waiting room
One road trip to Collingwood
Another half hour wait in an emergency waiting room
Countless nurses and doctors who looked right through me
As long as I didn’t kill myself
No skin off their backs
One prescription for Diazepam to get me through another scary night
Several messages and emails left for my neuro psychiatrist and to my family doctor and to anyone else I could think of
Two more days until I get to see my neuro psychiatrist
Thousands of hugs and kisses and words of encouragement from Joey and my mom
Countless messages of support from my friends, family and Facebook peers
One persevering warrior
Who is trying her absolute fucking best
To not give up
One day and night
Where the first and last thoughts aren’t about panic attacks
Would be nice too…
So I did something today
That I hadn’t been able to previously accomplish
I finished an audiobook
No big deal there
That happens very frequently
I should clarify
I finished an audiobook where the main male character has Multiple Sclerosis
I know it might not seem monumental to you
There was no forewarning about his diagnosis in the description of the book
Because in all likelihood
I wouldn’t have given it a listen
I hate to admit that in the past I’d been unable to continue to listen when I got to the point in the story where a character was revealed to have MS
In that instance
I stopped cold turkey
Right then and there
This time around
I had two hours left in an eight hour book
It wouldn’t have been strange for me to not finish listening
There have been many times
Where the romance audiobook character said the word ‘gosh’ too many times
And with only minutes left
I just couldn’t do it and ended that listen lightening fast
Anyway this time
I got to the part where it is revealed the character has MS
I paused the audiobook for a minute
I called Joey to come into the room
Explained the situation
Made him listen to the line
I did something unlike myself
I kept listening
There may have been some tears
The female characters
Not my own
A little my own
The story kept going
It didn’t end there
With him in a hospital
Talking medical shit with a doctor
The story continued for two hours
Two hours where I continued to listen
I could have stopped
Found something else
And yet I listened to the whole story
Sometimes with tears
I kept going
I listened until the very last second
I listened until the credits rolled and the audio went silent
I can’t think of anything more fucking poignant
I think I could write a story about my life
With a tongue-in-cheek name like ‘The Measuring Spoon of Life’
It would be about a little girl who would carefully measure her happiness by how many nights a week her favourite cousins could sleep over
She would use teaspoons and tablespoons to represent her happiness
When she was a teenager, she learned to measure happiness in dimes and grams
She would use scales and dime bags to symbolize her happiness
As she grew into a young adult, her happiness amounted to how many days in a row she got to spend with her love
For that she used cell phone pictures depicting laughter and text messages filled with flirting
Then when she hit her late 20s, she would measure her happiness by how long she could remain in public without having a panic attack
She would use mood journals and diaries to interpret her happiness
Later in her mid 30s, her happiness was measured by milligrams, and how many Ativan’s she’d had to take
Pill bottles and prescriptions were the perfect illustrations of how much happiness she’d been prescribed
Throughout the story the landscape changed
The young girl grew into a teenager and then an adult
But her objective in life remained the same
The pursuit of happiness
She learned very early on
That happiness only came in small doses
And because of that, it should be treasured dearly
She would think to herself
Maybe it’s so people don’t overdose on happiness
It’s far too sacred to be given an abundance of
In the story of the young girl, she learned early on
That happiness is not going to stick around forever
So she learned to cherish the nights with cousins, the recklessness found in the dimes and grams of youth, the lucky days spent with lovers, the little successes during rough patches
Like all great stories
It comes with a life lesson
Using the girl who measured happiness with spoons as an example
The story warns that if she had so much as blinked her eyes
She might have missed one of the small measured capsules that happiness would hide in
But that little girl was smart
And she knew that one day she might need a dose of her treasured happiness
She knew it would help her
To get through all the hard times that were waiting up ahead
The story ends with that little girl as an old woman now
Suffering through pain of illness, loss and disease
She looks so old and sad
She opens up a memory box
And empties it all onto the bed beside her
Out comes the spoons, the scales, the pictures, the journals, the diaries, the prescriptions
The old woman looks at her life laid in front of her
Instruments of measured happiness
And she’s so grateful
That she held onto all of those small doses of happiness
She thinks to herself
How much she needed to see it, to feel it all over again
She smiles for the first time in a long while
She can’t even count how many times
Those small doses of happiness that she’d held onto
Saved her life
Maybe a thousand times already
And once more
The thing with chronic illness is that it takes away your sense of hope
See, despite what ‘people’ tell you
There is a very real possibility that it won’t get better
In fact, with a disease like MS, there is the distinct possibility that it can always get worse
So, somehow you’re ‘supposed’ to remind yourself on those bad days
That it might be bad now
But it could always be worse
As if that notion is the balm to ease this ache
Sometimes, I grit my teeth and force myself to smile and nod along
Play the gracious and zen like ‘sick person’
Yes yes I’m nauseous pretty much 24/7, my body feels like an 80 year olds and my eyes hurt
But sure to ease anyone’s unease with my illness
I can put on a little dance
And play the part
For like a minute
Then the act starts to crumble
And like Cinderella fleeing the ball before her carriage turns into a pumpkin
I crawl back into bed and think to myself
That’s not who I am
I can’t make myself be someone else
No matter how hard you might want me to
No matter how hard I might want to
I’ve been there and done that
In the end
I’m always still just me
But I think I’d rather be that uninspiring sick person
Than this caricature of me that makes the rest of the world more comfortable
After all, those caricatures always get tossed out in the end