‘How lucky I am to have something that makes saying goodbye so hard?’ Winnie the Pooh

Some days the light is so bright that all I can do is immerse myself in it

The pain I usually feel is overwhelmed by the natural beauty the light bestows

Upon me

And all I can do is worship at its sight

Like a pilgrimage to a holy site

I sit in bask in what can only be described as incandescent

The way it heats my face and my body is a reminder of how alive I am in this moment

When I turn away

I am reminded how fleeting beauty can be

And how this moment may not last forever

And there might be a time when I can no longer see the beauty right in front of me

But memories fade and I want proof that this moment existed

I take a picture and write a poem

And hope that something gets imprinted onto my heart

So that I may be able to conjure up these feelings on the days when I just can’t find the light no matter how hard I try

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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

‘I don’t know who I am or maybe I do know who I am and I just don’t want to be her anymore.’ -G.F

Feeling a little lost

I know

Nothing new

Since stopping the Paxil project

I feel like I have little purpose

I’m still off of work

Which basically means

I’m sitting on my ass doing a whole lot of nothing

My return to my role in the Section program is still unclear

Work has had my medical documentation for over a month but I haven’t heard anything on that end

Not a ‘get well soon’

Or ‘are you still alive?’

All that aside the million dollar question is what will happen if and when I return

I don’t know if they think I’m capable of returning to my position

They have the authority to move me into a different position

That’s weird isn’t it?

I’ve been made aware that it’s within their legal rights

But I no longer have a say where I work

Somewhere along the way

I no longer have control over a huge part of my life (my career)

I don’t know if it’s MS that I owe that to

Or my ongoing struggles with mental illness

Or an amalgamation of all the above

Each taking a little piece of my ability to be a ‘good’ employee

Of course there’s an option to leave this job and look elsewhere

But I would only be kidding myself

If I were to say that it would be different in another job

I mean

At first it would be

I do well in interviews

Maybe they’d hire me

Things would go well

I’d exceed their expectations

And then

The sick time would start accruing

And instead of them looking at me like I’m some slacker

I’ll explain my illnesses

And then

They’ll understand

For months or maybe even a year

But eventually

The rhetoric remains the same

Angela is an excellent worker…when she’s here’

Call me pessimistic

But I think it would make a memorable epitaph on my grave

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

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