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

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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

A bruise by any other name

A bruise is like a badge

You’re not just handed one

You earn your bruises just like a badge

A bruise means you showed up

It signifies that you actually ‘did’ something for a change

That bruise carries with it the same honour as a trophy raised above your head

It says ‘hey world this might not mean anything to you but to me it means everything

Your bruise is one of a collection of bruises and scars

They are proof

In the flesh

That you’re real

That your battle is real

It’s evidence that you are still here

Inhabiting this world

This universe that you’re a part of

Left it’s mark on you

And you are treasuring it

Like the beautiful reminder that it is

Watching the marks build up

With a sense of awe

At what you’ve accomplished

In this life

Stretched out in front of you

Like a winners banquet

These bruises of mine

Look like victory

Hi my name is Angela and it’s been one week since my last infusion…

It’s been up and down

Steroids really fuck with my entire system

Most of the physical side effects have dissipated

Left over is irritability

More so than usual that is

I don’t know how last time around I spent an entire month in isolation

I’m seriously going mad inside

I’ve watched shows, played around with my hair, cleaned, planted some herbs on my terrace and slept

And thought

A lot

I’ve been thinking about what’s next with work, how the kids are doing, if this treatment will work, the upcoming Paxil withdrawal, how they really do get the caramel in the caramilk bar

And the list goes on and on and on

I’m not gonna lie

The Paxil thing has been at the forefront

I have been totally obsessing over it

I’m terrified

But that’s another blog entry altogether

Right now

I’m trying to make it to two weeks post treatment

And then I will rejoin the world

If it’ll still have me of course

Which has always been debatable

At best

Like me

Temperamental

At best

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?

36 Years Old And Still Not Okay

Sick and tired

Running a low grade fever

Closer to treatment I get, the worse I feel

I feel like I’m nonstop fighting a flu

Tired of feeling this way

But honestly, I can’t even remember a time where I didn’t feel shitty

Where I didn’t feel sick

Or just generally unwell

Mentally or physically

Even pre MS diagnosis

Facebook reminds me of all the statuses I’ve posted over 10 plus years complaining over one sickness or another

Is it possible that I’ve never been really OK?

And I know what the optimists will say:

You gotta be positive

Things will get better

But I have no evidence to prove any of that as plausible

In fact all the evidence I’ve collected throughout my life points to the contrary

The evidence illustrates a life filled with sickness and struggle as a result

Try as hard as I might

And I cannot for the life of me

Think of a time when I felt…I don’t know even just OK

But that can’t be possible right?

No one can always have been and continue to feel like shit, right?

Is anyone’s luck that bad?

So is it my mood then?…

This is like a chicken and egg thing

And I can’t figure out what came first

Did my mental health change one day…

And then my physical body became sick?

And when did this all happen?

Because I’m looking back through the screen shots of my life and I can’t think of a time where I felt…I don’t know…good

But ‘good’ sounds so insignificant

I don’t understand it

And I don’t know how to fix something that I don’t understand

Then I worry that I’ll never understand

So where does that leave me?

Sick

And

Tired

At only 36 years old

And still just fucking lost

Road map

I was 18 years old

I had just gotten my very first tattoo

In Montreal with my good friend

I got a tiny little fist

It took maybe 15 mins

And then we walked to a park

And I had my very first panic attack

This picture was taken when I walked away not really explaining myself to my friend

I don’t remember ever experiencing a feeling quite like that

Yet I instinctively knew that it was a ‘panic attack’

I grew up seeing my father have them

Almost daily

The knowledge didn’t help not comfort me

Somehow I made it through that first episode

I can’t really say how

And all these years later

And that tattoo

Of that little fist clenched in a show of power

Is still bumpy to the touch

Like a warning of the struggle up ahead

But I’d rather think of it as a tangible road map of what I’ve been through

And survived