“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

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It only looks hopeless when you can’t see an alternative

No matter how hard you try

Even trying on a different perspective for size

Still the hopelessness persists

This is what scares me

I remember during the height of my worst moments with anxiety

Thinking to myself that the rest of my life would be filled with days of panic attacks and days where I waited for the panic to attack

It would never end

That thought still haunts me

Part of the crux of my anxiety is the feeling of being trapped

Not necessarily in the physical sense of the word

But even where situations feel like I cannot control the outcome

Where I cannot extricate myself

Like a panic attack itself

Or being drunk

Or high

Apparently my depression isn’t much different

The darkest cloud hovers when I cannot see a way out of an empty thought, moment or situation

What starts as a fleeting worry morphs

And I begin to think in terms of ‘always’ and ‘forever’

It’s frightening because it feels like even the sanest part of your brain cannot conjure up a tidbit of hope to tide you over

Not even a little breadcrumb for you to follow towards hope

Life is funny that way

It gives you this stadium of life

And throws these curveballs at you

But it doesn’t provide you with the bat, the helmet or protective gear

Sometimes I scratch my head and wonder how some people win

I question the authenticity

Maybe they cheated

And everyone knows

That the games been rigged in their favour

And I’m just not in on the secret

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

Maybe, just maybe…

I’ve started Project Taper Paxil on Sunday

I worked myself into a frenzy anticipating what might happen

I took an extra Ativan to get some peace

I saw my doctor yesterday and he reminded me that I could have put off starting Project Taper Paxil for another week

But I didn’t

Evidence to support the theory that I’m stronger than I think

The doctor mused that it’s been a tough year for me

I guess it has, hasn’t it?

I can pretty much unequivocally say this is not where I thought I would be at this point of my life

At 36 years old

I had hoped for something very different

And that’s even with several revisions

But what do you do when that path leads you to a dead end?

If you’re like me,

You might spend too much time retracing your footsteps over and over again

Trying to figure out how you got it so damn wrong

Did you miss a turn?

Did something lead you astray?

Or were you just unlucky enough to end up on that path to nowhere?

If you’re like me,

You don’t have answers to any of those questions

But you just can’t fathom starting all over again

Finding a new path to walk

Wishing that this new path will be the right one

Hoping that it won’t become another dead end

But

Maybe this time you won’t care about the destination

But

Maybe this time you’ll be content with the journey

And

Maybe this time it will be exactly what you needed all along

And

Maybe, just maybe

You’ll be happy

At last

‘I’m afraid to be alone with my own mind’ -Sylvia Plath

Here goes…Everything

The compounding pharmacy has made the Paxil capsules for me

I picked them up yesterday

I will be decreasing by 4mg every two weeks

My dose was 40mg

Last night I felt really anxious

I keep thinking about how shitty I felt going on Paxil

I keep thinking about not being in control

I keep thinking about panic attacks

I’m trying to think about the benefits

Maybe I can lose the weight that Paxil helped me gain

Maybe I can stop sweating in the middle of an emergency cold alert day

And yet somehow

Those benefits just don’t stick in my brain

My brain that has been sponsored by Paxil for over 10 years

It’s not that I’m connected to Paxil

It’s not that I think Paxil has helped me

It’s solely the fear that is controlling me right now

The same fear that always controls me

That no amount of therapy or meds has ever really been able to free me from

I want to do things in life

That I do because I want to do them

And not because fear has made me choose them as safer options

And not because fear has made me avoid other things

Fear

In some ways I think this has always been my biggest challenge

Probably from a young age

Seeing my dad experience panic attacks

Seeing him not feel like he was in control

Therefore not feeling safe in someways

As I’ve gotten older

That control has gotten more important for me

And I need to hold it firmly in my hands

I need to hold it because if I don’t

The world will fall apart?

I need to hold t because if I don’t

I will fall apart?

I need to hold it because if I don’t

I won’t feel safe?

Sometimes I curse the level of self awareness I have

Sometimes it does nothing more than get me stuck in a thought

When instead I should be in motion

I know what is right for me

I know what I want to do

I just need whatever part of me that is holding onto that fear to catch the fuck up

But today

The warrior woke up first

And warriors aren’t afraid

I still don’t know what’s on the other side

But I took the leap

I’ve started the tapering

Let’s hope the scaredy cat version of me is not the one that wins

Let’s hope that this warrior side of me has grown strong enough to finally

Finally take back what is rightfully mine

My life

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

If only they gave out awards for worst sick person…

I am the worlds worst sick person

Specifically when I’m nauseous or feel like I’m about to throw up

My anxiety spikes

I feel like I’m going to die or go crazy simultaneously

Before you rush to sympathize and reassure me that I’m not, read on

I demand Joey stay beside while I ward off the evil nauseous feelings

But not move the bed in any way

I want him to keep his hand on me in someway so I know I’m not alone

But not too firmly

Lest his touch spur the nausea

I want him to talk

But not about anything to do with food

Which for a chef is like asking a new parent to not talk about their baby

And not too loudly either

The sound waves might make me hurl

Last night, I took Gravol and Ativan

And put an ice pack on my head

The lights off

And I asked Joey to tell me a story of when he confessed his ‘like’ for me

It’s a funny story

And always makes me smile

This time didn’t disappoint either

As soon as he gets to the part where he recalls telling me all those years ago that he’s ‘been digging me as more than just a friend’

I crack up

I was still nauseous

But it was better

He reminded me of how I planted a kiss on him

And he sprinted around the neighbourhood on such a high

Than he told me how because I was vacillating between telling him I liked him and not wanting to change our friendship, he was a nervous wreck

I remember that too

I was worried that we were too different

My dark to his light

I didn’t know then how much it would matter that he was my opposite

It seems simple now

The biggest fear was that we would lose a great friendship

I didn’t know then what I could possibly be gaining

The dude that puts my socks on when I can’t

When I’m nauseous the dude who tells me it’ll pass

Gets me ice packs

Regales me with stories from the past

Tries his hardest to not move the bed (which if you know him, you know is nearly impossible)

So yeah I may just be the world worst sick person

But who fucking cares if the one person I want by my side, can withstand the bumpy (read: nauseous) ride with me?