‘When the sun goes down, the stars come out’

It’s a common misconception that what leads people to take their own lives

Is the way they feel at the present time

But it’s not

It’s not even the unbearable sadness

Or the deep emptiness

It’s not the sluggish way they go through life

Instead

It’s the belief that it won’t get any better

That it will never get any better

That it will always be that way

That sad

That empty

That sluggish

It’s the fear that life will never be good again

That you will always be stuck in that halfway world of depression

Where you’re not really dead

But certainly not alive either

The absence of hope for a better life

Causes people to make drastic desperate decisions

It clouds their judgement

Of the possibilities and the what if’s

It is that moment in time of clouded judgement

That becomes the leading factor in making a decision

That will end one life

And leave so many others upended

There is something very natural about the desire to look forward

And most people have the ability to do so

To look towards something

To see the light at the end of the tunnel

But there are people in this world

Walking beside us

Talking with us

Laughing with us

Who are stuck at the middle point of a tunnel

Which for them

Has no end in sight

I’m not saying that I’m one of them

I’m not saying I can’t see the end of the tunnel

I’m just saying

It just gets real fucking dim sometimes

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‘If you surrender to the wind, you can ride it.’

A little over 10 years and 2 months ago

My biggest struggle was anxiety

Not your mothers dinner party anxiety

Or your coworkers deadline anxiety

But crippling fear that I was going completely and utterly fucking crazy

By this time I already had a taste with 9 years of anxiety which was more like a smattering of isolated incidents

The worst part was developing IBS during that time

Rewind 9 years earlier

My first conscious memory of anxiety was when I was 18

I had just gotten a tattoo in Montreal

I was in a park with my friend

And this overwhelming sensation came over me

I knew what it was of course

Having seen my father battle anxiety my whole life

I didn’t know then

That this would be far from the last time I would feel so fucked up

Fast forward to being 27 years old

About to get married in Montreal ironically enough

So excited

So happy

And dreading the feelings that anxiety was stirring up in me

Interestingly my father had what was then known as a ‘nervous breakdown’ on his honeymoon in his late 20s

Fast forward 35 years to my life

I became unable to work

I had to quit my job

I couldn’t even leave my house

I think I went to the hospital a few times

Not that they helped me at all

Aside from giving me very strong antipsychotic meds that knocked me on my ass for 3 days

Fast forward 10 years and 2 months

And for the most part I’ve got a good handle on my anxiety

I’ve accepted it

In doing so it doesn’t rule my life

It’s no longer the first thing I think about in the morning

Nor is it the last thing I think about at night

Except

This last week it has been

I’m getting ready to go on vacation

Planes, resorts, restaurants, buffets

Panic attacks, claustrophobia, IBS, bacterial infection re: Lemtrada

So every night I go to bed

And I toss and turn

Choking on a lump in my throat that isn’t there

Worrying about things that might never happen

Afraid that the crippling anxiety from all those years ago

Will come back with a vengeance

So different from depression

Which is like a comforting embrace that is suffocating you without you even knowing

Anxiety is where your skin crawls

Your muscles so tense they pulsate

Your brain so wired it can’t shut down to allow the body to rest

All of this

Because I wanted to go on a fucking sun filled vacation

And now all I keep thinking is that the sun better be so fucking bright it hurts my eyes

And the ocean better be so warm that I’ll feel like I’m in my bath at home

And the wind better be so soothing that it will make all memories of this pain and discomfort

Feel like they are from someone else’s life

And I can pretend

For a week

That I’m free

‘Life is a game. Money is how we keep score.’

Multiple Sclerosis and Mental Health difficulties equals lots of sick days taken at different jobs over the years
It equals less money coming home
Because you run out of sick days when you can’t see out of one eye
Because you run out of sick days when you’re too depressed to get up
Because you don’t have an endless supply of sick time
Because you have to take unpaid sick days

And then
Money equals stress
No one prepares you for this
The strain
Strain on employment
Strain on mental health
Strain on physical health
Strain on marriage
Strain on social life
Strain on life in general
Nobody gives you a magic wad of endless cash to alleviate the stress and the havoc that all of this plays on your financial freedom

And then there’s this
I’ve never been someone who cares about what people think of me
But this is something that troubles me
I hate knowing that there are people out there who think
I’m lazy
I’ve got a shitty work ethic
I’m not ambitious
I don’t care about responsibilities and obligations

And then I think
I think maybe if I didn’t have anxiety
I think maybe if I wasn’t depressed
I think maybe if I didn’t have Multiple Sclerosis
I think maybe if I wasn’t fucked up
I think maybe if I just wasn’t me
I think that maybe then
Maybe then
I could have been so much more
Maybe then I could have been the person I wanted to be
Maybe then I would be a Social Worker
Maybe then I’d be a Counsellor
Maybe then I’d be respected by all my work peers
Maybe then I’d not have to worry about money
Maybe then I’d feel proud of myself
Maybe then I could go on vacation
Maybe then I wouldn’t feel like such a burden
Maybe then I wouldn’t feel guilty all of the fucking time

Maybe maybe maybe
So caught up in the maybes of my life
There are just so many
The could have beens of my future
The endless possibilities
The jobs I won’t get
The places I won’t go
The person I won’t ever become

And now
I’m stuck with this
Dreamt up
Imaginary
Wished for
Version of myself
That 
Haunts
Me

‘We don’t even ask for happiness, just a little less pain’

Today

I feel defeated

It was time to go for my monthly blood test

And so I did

Without any problems

I waved bye to my favourite lab technician

She remembered to get the butterfly to take blood from my hand

She rarely leaves bruises

She remembers I need to lie down during the process

I forgot her name and called her by the wrong name

I hope she knows that her kindness has made a difference to me

Even though I still can’t remember her fucking name for the life of me

I walked out the doors and into the car where Joey was waiting

I sipped water

Like I always need to do

But always seem to forget to grab a bottle from home

You probably wouldn’t understand

It’s an anxiety thing

He asked how it went

Looking at the cotton ball taped hand

Proof that I’d succeeded

And then I felt the dam break inside of me

I started crying

Not hysterical

Not sobbing

Just an overwhelming feeling of discouragement and sadness came over me

Resulting in tears down my face

I kept thinking

Maybe I said it aloud too

I don’t remember

I can’t do this for another five years

I just can’t

The needle

The waiting

The results

Will this month be the one where I learn I have some type of cancer?

Will next months test reveal that I have something wrong with my kidneys?

Internal bleeding?

Everyone reassured me the monthly blood tests would get easier

But I’m like 8 months in

And I dread everything about this day and the week afterwards

Before you rush to point it out

Yes of course I’m proud that I’ve been able to do it

Yes of course I know that it could be worse

Yes of course I know that I signed up for this

Yes yes yes

Of course

There’s nothing you can say that I don’t already know

That I don’t repeat to myself a million times a day

That I don’t mutter under my breath whenever these fears creep in

That just doesn’t make me feel any better

And yet

Here I am

8 months in

I’m still alive

But that voice in my head

Just keeps talking

Keeps taunting me

Keeps haunting me

Keeps reminding me

This is your life now

The blood tests, the results page, the friendly lab techs whose names I don’t remember, the urine containers that I struggle to pee in, the anxiety

And the fear

That what if

In the end

None of it was worth it…?

Still I rise

Ever had that feeling where mid week, usually on a Wednesday, you start to lose steam? You feel your body slowing day and taking longer to respond. Your mind is getting sluggish. And you feel like you just need a really good rest to rejuvenate yourself? That’s what 7.5 months post Round 1 of Lemtrada feels like. My most recent blood test shows that my Lymphocytes are at 1.2, with a normal count being considered 1.0 to 3.0. This is the highest that my levels have been at since treatment. To recap Lymphocytes are white blood cells that help protect you from infection and are referred to as comprising your secondary immune system. So essentially this treatment kills your Lymphocytes in order to rebuild your immune system from a scratch like a reboot for your system in hopes that the cells which trigger MS relapses won’t be present in this new fancy immune system.

The good:

  • My monthly blood tests have all come back clear
  • No infections or serious side effects
  • My vision has NOT gotten worse
  • No taking daily injections

The bad:

  • While my extreme fatigue had faded off around month 3-4, it seems to have come back with a vengeance and I often feel really beat by about 1pm during the day
  • I still fucking hate blood tests
  • Only 4.5 months before Round 2 😱
  • Work has not been as supportive as I would have hoped

The ugly:Although my vision hasn’t gotten worse, a few days ago I experienced numbness in my hand and then in my foot (it has since returned to normal)

  • The MS One to One Program that comes with the Lemtrada treatment at a $180k price tag, has been disappointing. The nurses are supposed to check in with you and send you reminders for blood work. Neither of which have been happening. Not a big deal in the grand scheme of things. But after doing the treatment, understanding the high cost and reading about other people’s positive experiences with the program. It’s left me feeling pretty isolated and on my own. Which I guess isn’t that different from how the average person with MS feels when trying to navigate the healthcare system (along with everything else)

Trying to remember the following:Appreciate the small victories

  • I’m better today than I was a year ago
  • Just breathe

On that note…I still got this<<<<<<<

The power of anger can rage inside until it tears you apart

It’s been an anger fuelled few weeks

It’s not one thing that I can pinpoint

But rather an avalanche of bullshit

I can’t really tell which event triggered the catastrophic movement

I only know that at this point it seems like the load is unbearable and can’t possibly withstand anymore weight

I can feel anger building within me

I can feel the moment where my blood begins to boil

Feel the way it warms my body

Feel the adrenaline racing through my body

Gearing up for a fight

I’ve always likened anger to a pop bottle that continues to build its fury when shaken

And we all know what it happens when the next poor fool opens the bottle

But

What happens the avalanche doesn’t stop?

The fight doesn’t happen?

The pop bottle never gets opened?

The toxicity just stays in the body

It permeates every cell

It ferments

It changes you

It alters who you are

How you see the world

How others relate to you

And this is the fucked up part;

It doesn’t kill you

Instead,

It just slowly ruins you

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