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…

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‘…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

‘Deep in the heart of my soul, I’ll feel so glad to go.’ The Smiths

Disclaimer: I write this blog as a form of release. It’s cathartic. Please don’t tell me my feelings are wrong. This isn’t the place for that.

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What if this is as good as it gets

I keep replaying that in my mind

My heart doesn’t want it to be true

It lies to me

It tells me that it’s gotta get better than this

It weaves stories of a made up future that doesn’t include pain and sadness

And most certainly doesn’t include a disease as fucked up as Multiple Sclerosis

It knows just what to lure me with

It doesn’t bother with lies about riches and fame and fortune

My heart shows me a future that is serene

Days filled with thoughts that don’t make you feel like you’re going crazy

Nights slept through instead of worrying obsessively about what will happen next

It shows me a calm that I have never known in this world

It shows me a future that I instinctually know will never be mine

My mind is always there to remind me of what I already know

The heart doesn’t listen

Like they say

The heart wants what it wants

And so that traitor continues to beat

Thump thump thump

Sometimes the pounding is so loud and it reverberates through my entire body

Callously letting me know

That it’s still there

My mind always racing

To catch up to the beats of my heart

Ensuring it’s repetitive voice isn’t lost

So I continue

Another day filled with my heart and mind at war

Another day spent fighting and trying to drown out the noise

That nobody but me can ever hear

Still I wonder if it’s easier

To fight battles that exist outside the walls of your own skin and bones

So now I imagine a future

Without the lies of harmony and calm

With an enemy on the outside

My heart and mind finally calling a truce

And letting me Rest In Peace

The Pincushion Queen

I’m filling out a self exploration journal

It asks me questions that make me think

I mostly like it

Until it stumps me

It wants to know three thoughts that made me smile

I sifted through the ashes of the day that was coming to an end

Searching for the remnants of a smile

Surely there had to be something

Instead I walked through empty hallways in my mind

Like an old home

Abandoned

There were cobwebs where laughter should have been

There were dusty corners where smiles should have hidden

I felt frantic in my search

It had to be there

Hidden under the tarps

I needed to find the right moments to erase the sadness in my heart

From room to room

Floor to floor

I searched

For something to hold onto

I looked around at a strange home that I’d never been to

But like all empty dilapidated homes

The previous owners had taken the memories with them

Maybe tomorrow

I’ll get lost in my old home

I’ll find all the smiles and laughs

That have gone missing throughout the years

Maybe tomorrow

I’ll write it all in my journal

Hoping it’ll fill up the emptiness in my mind

Wishing that my heart will be so filled to the brim

That the sadness won’t have any place to slither in

And I can tape the pages of my journal

All around my broken bits

Covering the seams to keep all the happiness locked inside