Fourth try’s a charm.
Thank you to my homegirl Terri for being a blood retrieval Goddess 🙌🏼🙌🏼
Fourth try’s a charm.
Thank you to my homegirl Terri for being a blood retrieval Goddess 🙌🏼🙌🏼
It’s hard to actually see your own recovery
Unlike your relapse
Which you can replay without hesitation in your mind
Recovery is different
It’s like one day you’re a total fucking basket case
And then you blink your eyes and you’re you again
Maybe if you’re like me
You started to experience brief moments of you again
So you hoped and wished that it meant you were finally coming back
And then one day
Visiting your own condo
You instinctually know
Something is different
Something has changed
The me that was gone
The me that I was so sure I’d lost
That me came back
Looking at her in the mirror
It’s so hard to imagine how badly things had gotten
How far away she seemed
How trapped in her own mind she’d become
Here she is
Standing before me
Looking back at me
She’s far from perfect
Not even close to almost
And yet I’ve never been happier to see my own reflection staring back at me
I arranged to have one of the Bayshore nurses come to my parents house to do my monthly bloodwork
Since I skipped last month
I was nervous before the day started
But I went with it
The nurse got here
I did the same old pee in the plastic cup song and dance
And then sat in a recliner to get it over with
I told her I usually have it taken from my hand
And that I have anxiety related to it
She was kind and all that
I didn’t have my rubber ball to pump to get the vein ready and blood flowing
But I tried other methods
She got the vein on the first try
I breathed a sigh of a relief
After the initial painful puncture
No blood came out
She tried a few times to get it flowing
She tried a different vein on the same hand
I pumped my hand manically
She got the vein
I asked her to try my other hand
I was pretty shaky, sweaty and anxious at this point
She inserted the needle
No fucking blood
I literally have the needle in your vein and nothing is coming out
We gave up
She recommended I try to go to my regular lab and see my usual homegirl
But of course
Because of my panic and near agoraphobia
I had been trying to avoid that
With her empty vials
And unfulfilled lab requisition
I was left with my urine sample sitting on my mother’s coffee table in her living room
There wasn’t any point in sending it in without the blood
Three track marks and I’m sure ugly bruises to follow
I pulled my knees up and just started sobbing
I broke my no-crying-for-three-days record
Feeling sorry for myself
Everything is always so damn hard
Nothing seems to come easy
After all of that
I didn’t have a panic attack
Even pre crisis
A day like today would have likely made me have a panic attack
Through the punctures, the pain, the discomfort, the crumbled hope and the anxiety
I didn’t have a panic attack
That’s my silver lining on this shit-tastic day
Its been three weeks since I slept in my own bed
It’s been one month since I went to the first emerge
It’s been four weeks and two days since I spent a night in a crisis centre
It’s been four weeks and one day since I went to the emerge in Collingwood
It’s been three weeks and two days since I sat in my neuro psychiatrists office crying and begging for help
It’s been three weeks less a day that I went back on 40 mg of Paxil
It’s been three weeks of good days, bad days and horrible days
Its been one day since I saw my neuro psychiatrist again and he upped my dosage to 50mg of Paxil to get me through this ‘crisis’
It’s been one day since he told me there was a significant gap in the mental health system which is why my wait for OHIP covered CBT is taking so long
Its been one day since he gave me the info of a private clinic
Its been thirteen hours since I started my new dose
It’s been thirteen hours with my stomach in knots
It’s been thirteen hours of fears, what if’s and so much more hope than I ever thought I had
One day at a time never felt quite so long
I know I’m not patient
But I’ll keep waiting if it means I get even a small fraction of a happy ending
I’ll keep waiting if it means that the last month hasn’t been in vain
I’ll wait as long as I can keep finding shards of light in the darkness
I’ll wait even it’s just a flicker
I can’t help but worry
I can’t help but wonder how long the world will wait for me…
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’.
Three weeks ago
I felt scared
I felt panicked
I felt unsure
I felt lost
I felt alone
I felt weak
I felt crazy
Three weeks later
I feel strong
I feel empowered
I feel courageous
I feel a little invincible
I feel like a conquistador
I feel proud
I feel brave
I want to bottle this feeling
Memorize this moment
So that I can take it out when I need a reminder
Of who I am
Of what I’ve overcome
I want to look back on this
And only feel proud
That what I endured
Didn’t break me
It didn’t shatter me into millions of sharp pieces
A fire within me was ignited
Inflamed by my struggles
Emboldened by my heartache
It burns so bright and so fiercely
That I wonder if the stars above will take notice
Unsure if I’m beckoning them
Or trying to outshine them
We’re the same though
The stars and I
We’re both exploding from our depths
And illuminating what would have been total darkness
It is both heartwarming and difficult to look at these pictures of me.
I can see innocence and hope and so much zest for life in her expressive eyes. When I look in my eyes now, 35 plus years later, I see sadness that changed who I was to become.
I don’t know if that funny little girl with the big doe eyes is still around…but to her..I’m sorry…I wish I had done better