‘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

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‘Only In The Darkness Can You See The Stars.’ Martin Luther King Jr

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…

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’.

‘At Times, Our Own Light Goes Out And Is Rekindled By A Spark From Another Person.’ Albert Schweitzer

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.

state.

You threw me a lifeline.

You listened.

You talked.

You joked.

You laughed.

You related.

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. 😊

Forever grateful,

Angela

PS if anyone knows him or how to get in touch with him let me know

‘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

‘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.

‘If I Could Start Again. I Would Keep Myself. I Would Find A Way.’ Trent Reznor aka GOD

I watched Birdbox the other night

With difficulty

Anyway

It’s a post apocalyptic film that is more unsettling than scary

The characters apparently ‘see’ something that is so troubling, distressing or terrifying that it makes them kill themselves instantaneously

The only way to prevent this

Is to be blindfolded effectively eliminating the chance to ‘see’ anything and that in and of itself is probably the scariest aspect of the film

Spoiler alert

The characters flee to a safe place which happens to be a home for the blind

Although in the book

This sanctuary is comprised of people who have voluntarily blinded themselves

Which I must say

Is a far creepier ending than the somewhat optimistic one the movie left us with

Regardless

This movie left me with a lot of thoughts

Two of my fears just happen to be the end of the world and going blind

😬

The former because of a weird experience I had with magic mushrooms when I was something like 16 years old

And the latter

Well that’s pretty self explanatory

What the movie gets so right though

Is capturing the fear of the unknown

Seeing the monsters always takes out some of the scare factor

Leaving them hidden

Allows us, as the watcher to assume the worst

Creating our own separate and distinct versions of the scariest creatures possible

And then this got me thinking about Multiple Sclerosis

Because these days, what doesn’t?

That very reason

The unknown is why people with MS tend to have high rates of anxiety and depression

When we are left to conjure up visions of our futures

We think of worst case scenarios

Each of us coming up with what would be the most horrific outcomes possible

Based on our individualized dreams, aspirations, loves, passions and etc

So how do we move forward?

When there is no way to accurately predict the future

Or even an adequate idea of what you want your future to look like

Even with scientific facts and doctors and MRIs

Several years ago, after a particularly bad period in my life filled with panic attacks

I attended a cognitive behavioural therapy group for panic and anxiety sufferers

One of the techniques they taught us to cope with our panic/anxiety

Was the use of exposures

Another was challenging negative self talk

At the time, I was struggling with my panic attacks occurring when I felt trapped

So I did my exposures in locked closets and on long subway rides through tunnels

I challenged all of the ‘I am going crazy’ and ‘I am a failure’ negative self talk

And replaced it with things like ‘I’m experiencing a panic attack, not going crazy’ and ‘having a panic attack does NOT make me a failure.’

The 14 week program was probably the biggest reason why my anxiety for the next several years was manageable

Until Multiple Sclerosis came along with its lesions and inflamed optic nerves and steroids

And literally upended my entire world

But what if I could use similar techniques to cope with MS?

Like my anxiety, it’s not going away and is a part of who I am

What if I imagined the worst case scenarios of MS? Like really felt and experienced what it would be like

And survived?

What if I challenged all of the painful thoughts that float in my head so many more times a day than I care to count?

Would it make this more bearable?

What if I accepted the unknown future and made a promise to myself that I could still bitch and hate and moan about it but ultimately roll with it and move on?

What if I accepted that I can’t finish my Bachelor of Social Work?

What if I accepted that I probably won’t be able to work full time?

What if I accepted that I will likely continue to struggle with my vision and the pain it brings?

What if I accepted that I will never have the life that I thought I would? That I hoped I would?

Would I then be able to finally end the chapter on all of that?

That chapter which has been left on a permanent ‘to be continued’

Which feels more like a permanent hostage situation

So what if I could erase that last line

And start a new fucking book

With all of my ‘defects’

With all of my broken pieces

With all of my changed dreams

Could I burn that old book filled with my past and all of my hopes for a future that isn’t really mine anymore?

Could I do it and just start over?

Not knowing what the ending will look like

Not knowing what will fill the table of contents

Knowing that a piece of me will burn with it

I have a tattoo I got years ago which reads ‘Tabula Rasa’ which translates into ‘Blank Slate’

I got that because I liked the idea of being able to start over

At any given time in our lives

To stop the story

And start something new

I think it’s been somewhat of a motto for me

When I didn’t like school or work

I called it

And started anew

So maybe that’s where I’ll start this new year with

My tabula rasa

My slightly broken

Slightly defected

Slightly damaged

Perfectly

Blank slate