Disclaimer:

I write because it feels good. I write because I have stuff to say. I write because I like seeing my words laid out in front of me. I write with myself in mind as the audience. I don’t write for compliments or pity. I don’t write to see how many likes or follows I get. I write the way some people need a cigarette to relieve the tension. It needs to come out. And it will. One way or another. This just happens to be the more positive way for it to do so.

I’m in a mood

The kind where I’m starting to doubt whether or not the treatment was even worth any of it

I’m approximately 2 months and a week post Round 2 of Lemtrada

I’m really tired

I don’t think I’ve made it past 10pm more than a few times

I’m nauseous more often than not

My eyes hurt

Back and leg pain

The laundry list could go on

I’m tired of feeling shitty

I’m tired of complaining

I’m frustrated

I’m irritated

And I’m sad

The me in my head

Isn’t this person

She’s out there living life

Not holed up in her condo

Hiding from the oppressive heat

Writing and feeling sorry for herself

That makes me so angry and disgusted with myself

Like I don’t even know this person anymore

I want to shed this old skin

This body

This mind

It clearly has been dysfunctional from the very beginning

Hell even upon being born

I couldn’t go home with my mom

I had to wait in an incubator

As if to prepare me for the outside world

That too

Clearly didn’t work

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“We looked for the easiest way out: a separate reality.” ― Paulo Coelho, Veronika Decides to Die

My hair is falling out

My eyes hurt

And I’m trying to remind myself why I did this fucking treatment

This weekend passed by in fits of long naps

When I’ve been awake, I feel tired and irritated

This is the stuff no one tells you about chronic illness and the shit you do to your body to ‘get better’

I’m almost two months post Round 2

I did my blood work

With much greater ease

The first month of the next five years

There’s so many thoughts rumbling around in my head

And even trying to make sense of them in writing isn’t doing the trick

I went to the optometrist and while my vision hasn’t gotten worse she was concerned over my eye pressure and appearance of optic nerve

She said it didn’t have anything to do with my optic neuritis episodes

Glaucoma?

Being sent to ophthalmologist for more tests

I went to the group again on Friday

The topic was the difficulty in decision making

Funny since I’m struggling with this long term disability decision

I came home feeling understood

Something that’s always evaded me

It was a wonderful feeling

That I’m trying to hold onto

But it’s just out of my grip

Like the Banksy art on my arm

I’m reaching for it but it’s just passed my reach

What is it about a death that makes you evaluate and question everything?

I think it must be the finality of it and the possibility that each of us might pass away before we’ve done/said/felt something we have determined to be important.

And if we fuck it up

That’s it

There’s no take backs

No do overs

There’s this one chance at life

Yet, to fuck up is inherently human

We make mistakes

Sometimes we learn from them

And sometimes we keep making them over and over again

And yet to say at the end of your life (however long that might be)

That you have lived and will die with no regrets

Is kind of a beautiful thing

A lie undoubtedly

But indeed a beautiful thing

Much in the same way that fairy tales are beautiful

Or heavenly tales of the after life

Each of those beautiful in the way that can never be true

Real life stuff isn’t beautiful in such an edited way

It’s messy

And it doesn’t play out in such a fantastical way

There’s not a before

Not a once upon a time

Not a singular event that changes us

And then an after

Not in such a seamless order anyway

There’s lots of before moments

Lots of events that are detrimental to who we are

Lots of events that are completely insignificant in the greater scheme of things

But there’s not one final culminating scene in which the fairy tale closes

We don’t know when it will end

We don’t know when our life is over

And so we live it the only ways we know how

We segment this great big life into days and weeks and months

Not knowing when we will run out of them

We go on this way

Until we simply have no days left

And the story ends

Sometimes abruptly and with a bang

Sometimes quietly and with a whisper

And each of us never knows how the story ends

Up until that final moment

What will be replaying behind our eyelids as we take that last breath?

Will it be relishing our own versions of the happily ever after we lived?

Sprinkled with some regrets but overjoyed with all the things we did do

Or will it be filled with visions of a life that we never really lived?

Weighed down with regrets that could have been chances if not for the fact we didn’t take them

Once upon a time I knew how I wanted my story to end

But my head got stuck somewhere along the way

And I’ve become stilted by some life altering events

And now I can’t reimagine a happily ever after

That includes me

Let alone

One that stars me

The Cowardly Lion’s Great Lie

The cowardly lion

Wanted nothing more than courage that he didn’t believe he possessed

He joined a rag tag group of travellers

Searching for a magical cure for his allusive cowardice

Together he and his fellow travellers

Fought through witches and flying monkeys and haunted forests

Hoping and fighting to find the one thing he wanted more than anything

In the end, the lion learns that he always had courage

He just needed to find it within himself

Like the scarecrow and his brain

The tin man and his heart

It was always right there within themselves

The story ends and they all happily walk down the yellow brick road of life

Each of them happy and content they’ve found the things they’ve so long desired

The audience smile and titter amongst one another

That this is a story from real life

One just needs to believe in themselves

But I wonder what would have happened

If the cowardly lion learned he would never find his courage?

This mysterious thing was never to be attained

The courage he yearned for would continue to evade him

Mocking him cruelly

The lion that should be so brave and strong

Is nothing but a great big disappointing coward

Just like when we disappointedly learn that the wizard is nothing more than a regular human pretending to be something he will never be

The lion will be forced to continue to wear his warrior costume

The whole world watching

All the while the lion knowing he is nothing but a fraud

The scared cowardly lion just waiting for the entire world to find out what he’s always known

That he can dress it up

And make it look real believable on the outside

But if there’s nothing inside him

The facade will all fall apart

And he’ll always be remembered as that scared cowardly lion

Who couldn’t, no matter how much he wanted, live up to what he was meant to be

To what he always wanted to be

The courageous lion that doesn’t exist

‘Courage, above all things, is the first quality of a warrior.’

All I can see is the empty space where my ‘motivational’ affirmations once hung

All the words I thought I’d need to get me through this dreaded Paxil withdrawal

Now discarded and out of my face so I don’t see the glaring reminder of another failed attempt

But it’s likely I didn’t stand a chance even before I started

I hadn’t had a full blown panic attack in a long time

Until today, that is

All week I felt it coming

Making me irritable and antsy

But I proceeded forward with my Project Paxil Taper

Each day I told myself I didn’t feel worse

I didn’t feel anxious

It was fine

I was fine

But I was lying to myself

I don’t know if it was the anticipatory anxiety that got me or the effects of decreasing Paxil

I don’t think I’ll ever know

I reached out to professionals

Asking for help and support in this withdrawal process

But again and again I was met with lack of resources and ambivalent sympathy

Today it was too much

I closed the blinds in the condo

Tried to distract myself with audiobooks and tv and music and extra long hot showers

And all the while I could feel it’s suffocating grip on me getting stronger and stronger

Making it harder to think and breathe

I laid in bed and tried to utilize the skills I’ve been taught

But none of them worked

My stomach hurt

I felt nauseous

I could feel the grip getting stronger as I grew weaker

Clammy and sweaty and cold

My headache hurt like it did all week long

And then when I couldn’t hold it off anymore

It overpowered me (like it had done so many goddamn times before)

And just like that

I felt helpless all over again

Like the fucking victim I never wanted to be

I took more Ativan to help it go away faster

Joey was home and tried to quell the rising panic

And the crying

All the fucking crying

But nothing works

My crying louder and harder to breathe

The only thought clear in my brain

Is how this is never going to stop

I will always be at war with myself

My natural instinct is fucked up and no matter how many times I’ve tried it just doesn’t change

It doesn’t matter how tired or how many good days, weeks or months I have

When I’m at my weakest

It rears it’s ugly head

And I’m powerless to defeat it

So all this bullshit warrior can do is cry

Not in sadness

But with pain that comes from deep within me

Because I know

That at the end of the day

Not even 4mg at a time

Not even with support

Not even with CBT and all the other therapies

That I still can’t beat this

It won’t matter if I cover my body in quotes and reminders

It won’t matter how much I want this change

How determined I am

All that matters is that I’m still so afraid of my own goddamn mind

I’m afraid of the panic it can conjure all by itself

The derealization, the depersonalization, the heart racing, nausea, can’t breathe feelings that come at me full force

And I just can’t see, no matter how hard I try (and trust me I so badly want to see it)

A time in which those feelings are not a part of the landscape of my life

And that is the most terrifyingly hopeless thought I have ever had

My doctor said to me on Monday he could see a happy ending after all of this is said and done

I won’t lie, I carried that home with me and placed it under my pillow and wished on it every night since

But not everyone gets the happy ending that they want

Maybe this really is as good as its ever gonna get…

The task is in deciding if that will ever be enough

One May Have Good Eyes Yet See Nothing

I started to write an update as it’s been two weeks since my last infusion day…

But everything seemed so trivial when I saw it typed in front of me

There’s so much that I want to say and yet it doesn’t feel like it would amount to much

So I’ll make this brief and say the only thing I’ve really been wanting to say:

I’ve been watching TV like all day every day

The bingeing kind of TV watching

The kind I’ve been unable to do in so long

And I was scared to say this aloud or type it out

But fuck it it’s my blog after all

My eyes don’t hurt

I’ll say it again for the people at the back

MY FUCKING EYES DON’T HURT!

I can’t remember a time when they didn’t hurt

It’s been that long

How crazy is it that I can barely remember the before MS version of me

I’m not foolish enough to think this is permanent

But for now I’ll relish in this moment

Temporary and short lived or not

And if it all comes back in the blink of my eye…

Write. Write until it stops hurting.’

-Anais Nin

I’m like the Tonya Harding of the non figure skating world

More specifically

I am the Tonya Harding of the sick persons world

Like Tonya, I’m not the easiest to like

Like Tonya, I don’t evoke feelings of sympathy

Like Tonya, I’ve had to work at everything I’ve ever wanted

Unlike Tonya, I know the war is with myself

No one else ever should a chance

I know that there is no outside force that can be changed which will miraculously make my own life any easier

Nor will it make me the perfect poster child for a winning MS campaign

Or the face of the next Bell Let’s Talk day

I’ve accepted that things will likely always be a little harder for me

It’s my cross to bear

I’ve learned not everyone has one

And yes they are indeed lucky for that

Would I change it if I could?

Without hesitation

Do I think that there is anything within my control that would make said things easier for me?

Not a chance

The cross I have to bear

It’s a big one

It’s heavy and solid all the way through

And I drop it often

I can’t ever lose it though

Because I know it’s mine for this lifetime

So I pick it back up

And march on with it

It never feels lighter or easier

But I get more comfortable with it

I still stumble, and I struggle

But I have learned something

That cross will always be mine

And so I bear that damn cross

That has my name so deeply carved in it

That it could only ever be mine

No doubt or question

Sometimes I think I was born with that fucking cross

It was always mine

It claimed me

Before I had a chance to even breathe