Quality Of Life

What defines quality of life?

Society would tell us

It’s a combination of good health, secure economic and housing status, family and friends and recreational activities

Reading over the aforementioned characteristics

It doesn’t seem like achieving a decent quality of life would be difficult

But all of that changes when you have a chronic illness

Especially one like MS

It doesn’t usually happen over night or in the blink of an eye

But over time

An MSer’s quality of life deteriorates or at the very least changes dramatically

Comparing myself to those qualities of a good

I can’t help but think I’m a little doomed

I don’t have good health

My economic security is interconnected to my chronic illness and changed greatly in the last few years

I’m lucky that I’m secure in my housing

My recreational activities have become limited

Friends and family especially during these trying times

Are not very accessible

And in the spirit of

transparency

I was never a very dependable friend

So these days

I can’t say I expect much from people

Anyway both family and friends come with their own sets of challenges

I recently had to take Gabapentin for a sensory pain I was having

The pain reduced probably by more than half

But my quality of life suffered

I felt lethargic and down

I didn’t complete any art for several days

I was pretty much restricted to my couch

So I was faced with the dilemma in making a choice between quality of life and pain management

I kept thinking

What’s the point of living if it consists of being like a zombie?

Granted I’d be a zombie in less pain

But a zombie nonetheless

I guess

In the end

I’d rather experience pain

And live

And doesn’t that just perfectly sum up my life?

‘And here you are living despite it all’ Rupi Kaur

There is something infinitely terrifying about needing any type of replacement for your blood

When the doctors first told me my choices were steroids or a hemoglobin infusion, I felt panicked

Immediately stories of tainted blood flooded my brain

I became very aware of my own mortality

Catastrophic possibilities of bleeding in my brain

Or bleeding to death

Were all I could think of

I also thought of everything I would be leaving behind

Joey

My parents

My sister

My nieces and nephews

I thought of all the things I might never get to see

Maybe I’ll miss Lisa getting hitched

Or my nieces having boyfriends

I’ll just miss out

On life

I thought about Joey

And how it might be easier for him without me

But then I thought of him moving on with someone new

Someone not sick

It was soul crushing

He’s mine

I thought

We’re supposed to grow old together

To retire in a hot place

And I broke down

I ugly cried

Hard

I’m not ready

It’s not my time yet

Then I thought of 6 months ago

About how many times I said I would rather be dead than dealing with my panic disorder

Maybe I jinxed it

Maybe I brought it on myself

Maybe I put a challenge out to the universe

But see

The thing is

You can’t be held responsible for things you say under duress

I wasn’t myself

I didn’t mean it

I was scared

So many factors

But I did wish it

So many fucking times

And I did mean it

It was so painful

I remember thinking death has to be better than this

Anything that makes it stop

You know?

That was 6 months ago

Today

I’m an artist who has shows planned

Today

I am a wife who wants to live out her future with her beloved

Today I am a daughter and daughter in law who wants to spend time with her family

Today I am a sister and sister in law who wants to share more laughs together

Today I am an aunt who can’t wait to see her nieces and nephews grow up and become who they were meant to be

Today

I want to live

Through the pain

Through the sadness

Through the blood tests

Through the infections and fevers

Today

I am going to fight

Because I want to

‘What else should I be? All apologies’ Nirvana

I wanted one week

Where I could pretend to be like everyone else

Where I could pretend to be the wife you deserve

Where I could pretend to be the person I always wanted to be

Instead I got a day here or there

I was too greedy when I wanted a week

I should have known better

I should have asked for a moment

Maybe two

But a week of unadulterated happiness

Just wasn’t meant for me

And so you had to suffer too

Because once upon a time you were unlucky enough to fall in love with me

This is what your life will be like

What it has been like

Hospital visits

Stomach aches

Crisis centres

Tears

Panic

And so many sorry’s that just get stuck in my throat

Making me choke

On nothing but apologies and regret

Sorry’s that your ears will never hear

Because to utter them might make you wonder the same thing I always do

‘Why the hell is he still here’?

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


This Isn’t An Ode To Panic Disorder…

I’ve hated you since I started experiencing panic attacks

No

Even before that

I hated you when I saw what you did to my father

How merciless you were

I hated how vulnerable you made him

I hated how scared you made me feel

When I started having my own panic attacks

I wasn’t unsure or surprised by your arrival

I was just upset

I was angry that I couldn’t fend you off

Especially after having seen first hand the damage you caused

I was frustrated

And you grew stronger

I had my very first panic attack waiting to board a plane

That sense of helplessness and feeling of being trapped

Allowed you to flourish

And you grew stronger

I got more frustrated

I became depressed

At what I perceived as my failure

Failure of what?

Outrun you of course

Break the pattern

And you grew stronger

Throughout the years and the numerous times you showed up

You stole bits and pieces from me

From my identity

From the experiences I stopped myself from having

I can’t count how many things I’ve missed out on because I was just too damn scared of you

And you grew stronger

I didn’t know that it was me who fed you

I didn’t know it was me that built you up

I vacillated between fighting you and being so terrified of you that I hid behind medications and isolation

I’m bone tired of fighting

I’m drained of the energy it takes to be afraid

I’ve been living with you my entire life in one form of another

You haven’t killed me

Yet

I was hurt because of you

The people around me were hurt because of you

But it was I, who allowed that to happen

Not you

You were never strong

It was always me that was strong

Always fighting against you

And

Hiding when self preservation took over

I used so much energy trying to not let you win

That I didn’t realize

I could end this epic battle

By waving a white flag

I spent so much time hating you

When I should have been understanding you

Because you were struggling like me

You were the outcome of the bad day, bad week, bad month that I’d had

You were what my body needed to expel to move on

I was too consumed by the symptoms you gave me

The shortness of breath, the stomach cramps, the heart palpitations, the depersonalization

To see that those symptoms came up because I dreaded your arrival

I’m sorry that I didn’t see you for what you really are

You’re me

And we’re in this together

So

If my body and mind feel like they need to have a panic attack…

Well I guess it’s ok

We will get through this

It’ll be uncomfortable

But it will pass

Just like it always has

And I promise to try not to be so hard on you

If you promise to do the same

Who knows?

Maybe one day

I’ll even write a poem about how grateful I am for your existence

I’d tell you not to hold your breath

But we both know I’d be lying

So I’ll just say this

I get it, Panic Disorder

I really do

I’m only sorry that it’s taken me so long

Dear Anxiety,

You’re a thief

Always taking

Never giving

You’re deceitful

And dishonest

You’re a master manipulator

And you thrive on the fear you create

You’re a jealous thief

Stealing away happiness

And love

Even robbing old memories

Making them turn sour

You’re a callous thief

Full of pain you can’t wait to inflict on others

Desperate to infiltrate every last happy place

You’re a cruel thief

Taking away the innocence of childhoods

And destroying what should be carefree teenage years

Annihilating adulthood with haphazardly thrown bombs

You’re a cowardly thief

Preying on people in their weakest moments

Victimizing the same people over and over again

Taunting them repeatedly

You are words that haunt

You are living nightmares that plague

You’ve stolen so much

That all we can do is pull at our hair and cry in frustration

Shouting that turns into whispered pleas

To just leave us alone

Wondering what we need to do

What more we need to sacrifice

To satisfy you

Spending entire lives

Serving life sentences

Paying penance for what we can’t control

All because of you

You’re nothing but a thief…

‘…In A World Of Ordinary Mortals, You Are A Wonder Woman.’ Queen Hippolyta (Wonder Woman’s Mom)

Struggling to get through today

Hour by hour

Minute by minute

Each second more excruciating than the last

Skin crawling

Head pounding

Eyes straining

This is the part in the movie where the poor guy reaches for his drug of choice

Where the sad woman guzzles her beloved bottle

It’s the climax in a novel

Where emotions soar to dizzying heights

Where nothing can possibly survive at such intensity

Like a car reaching peak speed

Like an addict reaching the height of their high

The moment is suspended in time

When the audience knows a turning point is coming

Watching for the pivotal scene in which the hero sheds his old skin

Where the heroine finally emerges

That’s what happens in movies and books

In real time nothing is ever quite so profound

The moment goes on and on

Stretching uncomfortably long

The hero remains sheathed in weary skin

The heroine hides in her shadows

There’s no audience waiting with bated breath

Rooting for the breakthrough moment

Instead

There’s only a woman looking at herself through a mirror

Waiting

Watching

Begging for a glimpse of the heroine to change the narrative of this story

From another unhappy ending

To one in which she finally gains her superpowers

Project Take Down Paxil 👊

I feel like I should apologize for being MIA lately

But I’m not really sorry

Because it’s for a good reason

It’s for me

Last Wednesday I dropped my Paxil dosage from 40mg to 30mg

I won’t pretend I was totally cool with it

I had a lot of reservations

But I also really wanted to do it

There were some shitty days obviously

Two days when my anxiety spiked to an uncomfortable level and I needed to take more Ativan

Several days where I had dizzy spells that came and went

But I survived

I can tell the following things helped:

Writing affirmations daily

Trying to stay busy

Doing a lot of introspection over the root of my anxiety

Now today I went down to 20mg

Last nite I was really starting to psych myself out of doing this

I kept thinking ‘woah 20 is a big drop from 40’

Then J. reminded me that I was going from 40mg to 20mg

I’ve been on 30mg and am stable there

Now I’m dropping 10mg again

Which I successfully did last week

I needed to hear that

It helped ease my fear

I made him write it out so I could print it

I’ve already reread it a few times

Along with some other affirmations

I need to keep reminding myself that I’ve already dropped 10mg and while unpleasant

I survived it

I’m still safe

I’m still here

And most of all

If I did it once

I CAN most certainly do it again

Changing the narrative helps

Taking the unknown and making it something familiar

Removes the fear

For anyone else out there struggling with anxiety

If I’ve got this

You’ve got this

Hard and uncomfortable as it is

We have what makes people into warriors

I’m going to remember all of the difficult things I’ve been through in my life

I’m scrappy

I am a fighter

Think of everything you’ve survived

I hope you keep fighting

Because I will too

That’s what warriors do

What I wish you knew

Once upon a time I saw a medium

Who told me that someone very close to me has been living their entire life with one foot in the grave

I thought to myself then as I still do now

That it was the most perfect way to describe this person

As a loved one of this person

It’s frustrating and maddening that they can’t shake it off

And see the love around them

Now as a person who can relate all too well

It’s frustrating for a different reason

The people around don’t understand

They don’t understand why that one foot stays firmly planted in the grave

They don’t see how hard it is to keep the other foot out of that fucking grave

They don’t get the difficulty making it through one day is, one function, one more appointment

I wish they knew…

It’s like constantly treading water to keep my head above it

My limbs feel exhausted

My brain keeps wondering when it’s an acceptable time to admit defeat and give up

My heart feels hollow

There’s a bone weary tiredness that permeates throughout every cell in my body and into my brain

I can go to sleep sometimes and sleep for hours

Wake up and feel like it’s never enough

Or I can lie in bed staring at the ceiling

Thinking that if I wished hard enough

I could make this all go away

I’m 36 years old

I can’t even remember a time before this

That’s fucked up

I mean

Surely I know there was one

I just can’t for the life of me picture myself in it

The present is like living in a post apocalyptic world

Where everything is bleak, tarnished and there is no hope

I can say for certain

This is not an enjoyable place to be

Living this way is not only exhausting

It’s also like having a flu you can’t shake off

No matter how many medications you’ve tried and doctors you’ve seen

Yet, even with the desire to feel better

The flu rages on

When you can’t remember a before

And you can’t see a future

The world becomes very narrow

It becomes the perfect setting for a dystopian society in a novel

Of which, one may want to read about

But no one wants to actually live in

It feels like I’ve become the main character in this novel

Searching for a way out

Up against opponents like doctors, employers, insurers

Trying to find allies

Unsure of who you can really trust

Like every good story

There’s a time constraint

I start to fear that I’m running out of time

I’ve read so many books where someone who needs help

Gets saved by a hero

In some form

I know that my story is different

There is no one coming to save the day

It’s just me

Still trying to find some way to fully live in this world

With both my feet firmly planted on the ground beneath me

Radical Self Acceptance

(This was from my MS support group I chaired last week)

Fighting reality only creates suffering. While pain is inevitable in life, suffering is optional. “And suffering is what happens when we refuse to accept the pain in our lives,”

Close your eyes and think about being diagnosed with MS

Think about the difficulties you encountered

Think about the hurt, pain and suffering you’ve experienced because of it

Think about all the medications and treatments you’ve tried

Think about how many times you’ve gotten your hope up for some miracle cure only to be let down

Think about all the time you’ve been angry, depressed or lost because of having MS

Now open your eyes.

Look around

You still have MS

So does everyone else in this room

Nothing has changed

simply because you deny it exists.

It is still there, waiting for you to deal with it.

“When you open yourself up to accepting the present moment precisely as it is, with no judgments, you are free to look at all of those puzzle pieces of the present moment and start to piece them together. “

What if instead of having all of that, you simply decided to radically accept your reality that is having MS?

Acceptance isn’t giving up

It isn’t resigning yourself to the illness

It is simply accepting that whatever is happening is happening

Acceptance is about letting go of the person you thought you were and the life you thought you had and making the most of the one you actually have

Some helpful strategies to practice radical self acceptance:

Acknowledge and learn how to cope with negative thoughts and feelings

Rewrite your story

Find activities that you enjoy

Spend time with the people you love and that make you happy

Note:

I’m not even close to being there yet…but I want to be