‘Expectation is the root of all heartache.’ Shakespeare

I’m starting a program tomorrow at my local hospital

It’s teaches coping skills for people with anxiety and depression

It is half days on Tuesdays and Fridays for 12 weeks, with a minimum of 5 Thursdays

It is a group format, run by a Social Worker, Registered Nurse and Occupational Therapist and overseen by a Psychiatrist

I’ll have a primary worker and access to the Psychiatrist during the program

At first, I was really intrigued and almost hopeful

Until I went for the info session

It was a few weeks ago

It was run by the OT who was jet lagged and seemed like she hadn’t a clue in the world of what she was talking about

I felt some of my balloon of almost hope deflate

I then went for an assessment last week with the RN, who sat impassively while I cried as she asked questions from her computer

I felt foolish and disappointed when I found out she would become my primary worker

I was accepted into the program and given a start date

Tuesday March 26

Tomorrow

I’ve promised myself that I will give it an honest open-minded try

After all, everyone has bad days and all that

And it would be reckless to throw away an OHIP covered 12 week program off of two measly meetings

Right?

Tomorrow, I’ll be there at 8:45 AM to start my first day

So maybe my balloon of almost hope won’t inflate

But maybe my ballon won’t pop either

And maybe

For right now, that’s good enough

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‘Armed With Skill And It’s Frustration. And Grace, Too…’ The Hip

It might look a lot like weakness to the outside world

Maybe even to inner circles

But there is nothing weak about the daily struggles that it takes to survive through a mental illness

I repeat

There is nothing weak about it

There is nothing weak about me

Yeah I get it

Maybe you see someone who is fragile

Someone who is broken

Maybe you see someone who is crazy

Fuck

I don’t know who or what you see

I know what I see

Every single time I pass my reflection in a mirror or window

I see a fighter

Someone who has spent their entire life fighting

Fighting to live

Fighting to find happiness

Fighting to find peace

What an oxymoron

I read somewhere once that,

Fighting for peace,

Is like fucking for virginity

I get it

But its the truth

I fight tooth and nail

I dig in my heels

I scratch

I claw

Anything

To make my way back from the war that is constantly waging in my own brain

If you’ve never been there

You’re blessed

Truly lucky

That you’ll never understand how totally terrifying it is to not feel safe with just you and your own thoughts

You’re lucky that you don’t have to wonder when it will all come crashing down around you

Again…

I’ll never be grateful for having mental illness

I won’t lie and pander about how its taught me so much about myself

About the world

Trust me

There are things I’d never wanted to learn

Like what Paxil withdrawal can do to your once functioning brain

Like how food can cease being appealing to a die-hard ‘foodie’l

Like what the inside of a single room at a crisis centre looks like

I could have happily gone through two lifetimes not caring to know any of those things

It hasn’t made me wiser

Or kinder

So I can’t find it in myself to express gratitude towards something that has stolen so much from my life

From my family

From my father

From me

What I can unequivocally state

Without any doubt in my mind

Is that anyone surviving with a mental illness

Must want to be alive a whole hell of a lot

To be persist

To continue

To just keep going

To anyone who doubts it

You have no fucking clue

The strength and determination it takes to do it all over again

Tomorrow

‘Putting up with means withdrawing from panic in panic; adding panic to panic, hoping that panic will go away quickly and not come back; it means avoiding people and places that bring on panic so that one’s horizon becomes narrower and narrower unit it is finally bounded by the front gate…It means continued illness.’ Dr. Claire Weekes

I’m feeling frustrated today

I consider myself a pretty smart person

Also someone who is more self aware than the average person

I’m well versed in all things anxiety and panic related

I feel like I graduated with a masters in this shit

I can recite all the therapy talk

More so

I actually believe in what I’m saying

I am perfectly aware that nothing worse than the panic attack itself, will happen to me

And yet

Every morning I wake up, heart pounding, mind racing

In fear of the next panic attack

Those same panic attacks I’ve been having for over two decades

Those same panic attacks in which what I’m most afraid of, does not come true

In fact

It never comes true

So what the fuck is the problem?

I think my own fear is greater than my knowledge

So I give in

Day after day

Even with the meds I obediently take

I watch life pass me by

Feeling less and less like it’s even my life that I’m missing out on

That’s how far out of reach things like dinner out or going to my sisters house seem

I can’t seem to stop from being hard on myself

I feel like yelling at myself:

AFTER ALL OF THIS, WHAT THE FUCK DO YOU STILL NOT GET?!

HOW MUCH MORE TIME WILL YOU WASTE BEFORE YOU FINALLY MOVE ON?!’

I’m sitting here shaking my head

Because, after everything

And I still don’t have the answers to any of that

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’.

Day 2 of 3 Quote challenge

Amidst the chaos of moving I almost forgot to post my quote for Day 2.

I’m not gonna nominate any more people cause I’m a rebel like that (read lazy).

This quote is hauntingly beautiful isn’t it? It’s no big surprise that I see myself as ‘broken’ and Hemingway helps me see it as not just a negative thing. Of course being broken isn’t ideal and I would have loved a different life but this quote makes me see the beauty in it. With all the cracks in my armour, the light flows in and it allows me to be the sensitive and empathetic person that I am. There may be parts of me that are damaged but there’s beauty in there too and that’s from the light shining in.