Alright so ‘Let’s Talk.’

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’.

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‘I Have Loved The Stars Too Fondly To Be Fearful Of The Night.’ Sarah Williams

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

Tonight

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

Someday

I want to look back on this

Without regret

Without sadness

Without bitterness

And only feel proud

That what I endured

Didn’t break me

It didn’t shatter me into millions of sharp pieces

Instead

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

‘Oh Angela It’s A Long Time Coming.’ The Lumineers

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

The Only Way Out Is Through

It’s been something like two and a half weeks since I lost my mind
Countless days and nights that I haven’t felt like myself
That my skin hasn’t felt like my own
Two and a half weeks since I went to two different emergency rooms
Two and a half weeks since I spent the night at a crisis centre
Two and a half weeks since I first lost my appetite
Two and a half weeks since I first started having irrational and obsessive thoughts on top of multiple panic attacks per day
Two and a half weeks since I became scared to be alone
Scared in my own home
Scared of my own mind
It’s been a week and a day since I came to stay with my parents
It’s been a week and a day and I’ve only been comfortable being left alone once for a short period
It’s been a week and a half since I told my neuro psychiatrist what I was experiencing
It’s been a week and a half since I went back to my old full dose of Paxil
It’s been a week and a half of 3-4 Ativan per day
It’s been a week and a half of nausea, grogginess, headaches, crying fits and having my appetite return
It’s been a week and a day since I haven’t went to bed in my own home
Where I haven’t seen Joey either right before bed or as soon as I wake in the morning
A week and a day since I last napped with my dogs
4 days until I call my neuro psychiatrist to let him know how I’m doing
5 days until I start paying for Cognitive Behavioural Therapy
Unknown days until I return home
Unknown days until I don’t wake up afraid of a day filled with panic attacks
Unknown days until I don’t fall asleep fearing another day of panic attacks
Zero days that I haven’t wished for a different life
Zero days that I felt like I had the strength, courage and determination to get through this
Today though…is a special day
It’s the day where I wrote
Today is the day that I got my voice back


‘That Which Does Not Kill Us, Makes Us Stronger.’ Nietzsche

Mornings and late late nights are my worst

So far, I’ve made it through 7 mornings and 6 late late nights

Though it felt more like months of both

My body is tired

From ingesting little more than diabetic meal replacement drinks

And the occasional PB and J sandwich

I never thought it could get so bad

Correction

I never thought it would get this bad, again

Although it feels new to me

In many ways I’ve done this before

From calling crisis centres to emerge visits and drinking meal replacers and med changes

I guess I should say

I hoped it would never get this bad again

I know the old adage of ‘that which does not kill us, makes us stronger’

But I think I’d be fine not being tested for the millionth time on my strength

I think I’d prefer something like

‘You’ve been through the worst, it’s all sunshine and meadows ahead’

Shit

I’d even settle for something like

‘Way to go Angela!

It’s all overcast and fields of manure with the occasional sun shower ahead.

Yeah

I could settle for that

‘A person with panic disorder may experience symptoms such as severe feelings of terror, rapid breathing, and rapid heart rate. People with panic disorder may experience these attacks unexpectedly and for no apparent reason.’

One week

That feels more like a year

One week

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…

‘There Are Moments That Mark Your Life. Moments When You Realize Nothing Will Ever Be The Same. And Time Is Divided Into Two Parts – Before This and After This.’ Nicholas Kazan (Fallen)

I had an a-ha moment today in my support group. We were on the first step which is:
1. We admitted to ourselves that we are powerless over our disease. That our lives had become unmanageable.
I got to go last…which meant I got to listen to 3 MS veterans. All having been diagnosed more than 15 years ago.
One spoke of feeling comfortable in being alone on Xmas day.
Someone else spoke of being okay with their sometimes self-imposed isolation. Another spoke of being aware of their limitations, without being self-deprecating.
I sat back and listened.
One in a wheelchair.
One in a scooter.
One with cognitive symptoms.
And I felt envious.
Of them.
Me,with my mostly mobile body.
Me, with my mostly cognitive functioning brain.
I felt jealous of each of them.
I felt jealous of the comfort and grace each of them had come to possess upon accepting their illness.
I sat there and reflected over the last 6 years since diagnosis.
The ups and so so many downs.
The relapses.
The symptoms.
The steroids.
Treatments.
Injections.
Sleepless nights.
Crying fits.
Raging fits.
Anxiety.
So much fucking anxiety.
All of it, having led me to this moment.
Waiting for my turn to talk in a 12 step support group.
Their eyes looked to me.
My turn.
I looked around the table.
Less than a year ago, they were nothing more than three strangers. People I would have passed on the street, without a second glance.
Now we share this inexplicable bond.
This illness we all have.
Referred to often as the ‘snowflake’ disease, since symptoms vary so much from person to person.
These three people who now know more about my feelings and thoughts than most of the people in my more immediate circle. These strangers not so different from this lifelong outsider, after all.
I told them I thought that I had accepted having MS.
6 years ago. I heard the words coming out of my Doctor’s mouth and thought to myself ‘okay….so now I have MS.’
I thought that was enough.
I thought that meant I had accepted it.
But it wasn’t until that very minute that I realized, I would never be able to accept MS, until I had also accepted the negative impact its had on my life.
That meant accepting the change in my job status.
The permanent damage to my eyes.
The toll all of it has taken on my already fragile mental state.
Taking all of that in…and still being able to say that while I won’t succumb to it, I have come to terms with having MS in my life. That I’m OKAY with it.
I’m not there…
Not even close.
But I found hope in looking around me.
Which for someone as chronically hopeless as myself, is a fucking lifeline.