Happy birthday to my better half

You have a light within you

That’s brilliant and warm

Just enough to make it cozy

Your light makes people want to be near you

To bask and enjoy its warmth

It makes me wish for things that aren’t meant for people like me

I used to wish you could take my darkness away and change me

But now I understand so much better

You can’t carry my darkness

It’s mine for a reason

But somehow

I can still see your brilliant light through my darkness

And that is enough for me

And that means more to me than you can ever know

Happy birthday to the guy that makes my life brighter ❤️

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‘We don’t even ask for happiness, just a little less pain’

Today

I feel defeated

It was time to go for my monthly blood test

And so I did

Without any problems

I waved bye to my favourite lab technician

She remembered to get the butterfly to take blood from my hand

She rarely leaves bruises

She remembers I need to lie down during the process

I forgot her name and called her by the wrong name

I hope she knows that her kindness has made a difference to me

Even though I still can’t remember her fucking name for the life of me

I walked out the doors and into the car where Joey was waiting

I sipped water

Like I always need to do

But always seem to forget to grab a bottle from home

You probably wouldn’t understand

It’s an anxiety thing

He asked how it went

Looking at the cotton ball taped hand

Proof that I’d succeeded

And then I felt the dam break inside of me

I started crying

Not hysterical

Not sobbing

Just an overwhelming feeling of discouragement and sadness came over me

Resulting in tears down my face

I kept thinking

Maybe I said it aloud too

I don’t remember

I can’t do this for another five years

I just can’t

The needle

The waiting

The results

Will this month be the one where I learn I have some type of cancer?

Will next months test reveal that I have something wrong with my kidneys?

Internal bleeding?

Everyone reassured me the monthly blood tests would get easier

But I’m like 8 months in

And I dread everything about this day and the week afterwards

Before you rush to point it out

Yes of course I’m proud that I’ve been able to do it

Yes of course I know that it could be worse

Yes of course I know that I signed up for this

Yes yes yes

Of course

There’s nothing you can say that I don’t already know

That I don’t repeat to myself a million times a day

That I don’t mutter under my breath whenever these fears creep in

That just doesn’t make me feel any better

And yet

Here I am

8 months in

I’m still alive

But that voice in my head

Just keeps talking

Keeps taunting me

Keeps haunting me

Keeps reminding me

This is your life now

The blood tests, the results page, the friendly lab techs whose names I don’t remember, the urine containers that I struggle to pee in, the anxiety

And the fear

That what if

In the end

None of it was worth it…?

The power of anger can rage inside until it tears you apart

It’s been an anger fuelled few weeks

It’s not one thing that I can pinpoint

But rather an avalanche of bullshit

I can’t really tell which event triggered the catastrophic movement

I only know that at this point it seems like the load is unbearable and can’t possibly withstand anymore weight

I can feel anger building within me

I can feel the moment where my blood begins to boil

Feel the way it warms my body

Feel the adrenaline racing through my body

Gearing up for a fight

I’ve always likened anger to a pop bottle that continues to build its fury when shaken

And we all know what it happens when the next poor fool opens the bottle

But

What happens the avalanche doesn’t stop?

The fight doesn’t happen?

The pop bottle never gets opened?

The toxicity just stays in the body

It permeates every cell

It ferments

It changes you

It alters who you are

How you see the world

How others relate to you

And this is the fucked up part;

It doesn’t kill you

Instead,

It just slowly ruins you

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I think I used to have a purpose

Some days I feel so empty

That I’m sure if I looked down I’d have a giant hole in my chest that I could see right through

Some days I feel so sensitive

That it hurts when people simply look at me

Some days I feel so anxious

That my skin somehow doesn’t feel like it fits over my bones

Some days I feel so sad

That watching someone smile makes my heart squeeze and contract

Some days I feel so strong

That I could conquer the world with only my voice

Some days I feel so magnetic

That I can see the moment someone feels the warmth of my attention

Some days my heart feels so full

That I think even the smallest thing can make it burst into a watercolour bouquet

Some days I’m so numb

That I’m pretty sure not even a gun shot would hurt me let alone kill me

Some days I feel so little

That I’m sure my insides must be hollow and barren

Some days I feel so detached

That my movements mimic a robot performing a sterile routine

Some days I just so feel so much like myself

That I feel like I could suffocate and choke on the predictability of it all

And I just don’t understand why

those are the

worst days

of all

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The only cure for the struggle is to hustle

Not everyone’s hustle is about making money and becoming famous

Some people hustle to survive

To simply exist

In this world

Another day

Another hour

Another minute

Another second

I don’t think there’s anything disingenuous about that sort of hustle

It’s the purest form of self-preservation

I’m a hustler by nature

I work harder with an enemy breathing down my neck

The enemy that both taunts and urges me on

It gives me the power I need

To slay the dragon

To quiet the demons

Always stuck in the same battle

Bearing both the burden that it brings

The crushing weight of it

And the need for self-preservation

Then there is the hustle that’s only for people

With dollar signs in their eyes

You know the ones

Who only do it to make more money

To buy expensive things

To fit into a society

Filled with people

That never cared about them anyway

Every day

Every hour

Every minute

Every second

They end up wearing the dollar bills like flashy suits of armour

And still no one takes notice

Yet somehow we’re both stumbling around

Trying to find a place in a world that still doesn’t feel like either of ours

Both always being our own worst enemy

Launching grenades

Dodging grenades

And never knowing which one will kill you

Because their grenades are fast and powerful

But yours

Always hit their target

And the target is always you

An update: The good, the bad and the ugly

I’m about 7 months post Round 1 of Lemtrada treatment. At this point I can unequivocally state the following:

• I haven’t had a relapse (evidence-No worsening symptoms, no new symptoms)

• My lymphocytes have slowly been replenishing themselves (evidence-I am at 1.0 as of last month around this time)

• I haven’t had any infections or severe side effects (evidence-no emerge visits)

• I have greatly improved my ability to work (evidence-I am working a FULL work week which I haven’t been able to do in years)

• The side effects from the treatment have significantly improved (evidence- fatigue is still a problem and appetite is wonky but I no longer feel like I’m going to…you know die 😬)

• Overall I have more energy than I have had in years (evidence- some days I can actually do stuff after work, at work I can actually keep up with the youths)

• My life hasn’t returned to ‘normal’ (evidence-I’ve been advised to not get tattooed until…) 

• There is a lot of uncertainty (evidence- will I have a relapse? Will the treatment be successful? Will I get one of the ‘bad’ side effects from treatment?)

• I still fucking hate getting blood work done (evidence-I still need to lie down every month while the lab tech draws my blood 😳)


❤️ Angela

What looks like defeat on any given day

de·feat·ed

dəˈfēdəd/

adjective: defeated

having been beaten in a battle or other contest.
“the defeated army”
demoralized and overcome by adversity

    Is it possible to only feel defeated?

    If so 

    Maybe this is it

    I think this is what defeat must feel like 

    I feel tired from simply existing

    My eyes feel strained and they too feel tired

    Even though 

    I’ve been spent more time asleep  today than I’ve spent awake

    It took me hours to prep myself to leave the house

    Lifting my feet to take a step felt like Herculean effort 

    My voice; raspy from under use, is reluctant to leave my throat 

    The excitement I normally feel at this time of year is muted and is buried under several blankets

    I think it’s there somewhere

    But I can’t quite get it to surface 

    That makes me frustrated

    Because I can’t change any of this

    Not really 

    Yeah sure

    I can change my outlook and shout ‘FUCK MS’ at the top of my lungs

    Maybe even alter my mood from time to time 

    But this fucking disease will still be here

    Even with all of the positive vibes I put out into the universe

    It can’t change the science behind MS

    The lesions on my brain will be there no matter how chipper I act

    The myelin will still be damaged no matter how sunny my disposition becomes 

    My fucked up immune system won’t suddenly correct itself even if I smile really big

    And yet

    Somehow 

    I know I haven’t been defeated

    Yet

    I’m still here

    Still tap tap tapping away at my phone

    Writing shit to lighten the load in my brain and on my shoulders

    Maybe it’s only an illusion 

    The long battle I didn’t sign up for

    The battle I didn’t know I’d need to fight every damn day

    Even on the days when I have nothing left to give

    I still show up

    For the illusive battle that feels like it ended

    I don’t know whether I won or lost

    Because I’m stuck wondering why I’m fighting so hard in a battle that just doesn’t feel like mine

    And yet I remember the feeling of defeat so real I can almost touch it 

    With visions of battle and defeat and fighting 

    I crawl back into bed wrapping myself in a warm blanket

    Thinking to myself

    Sometimes a whisper is more powerful than a scream

    So when I close my eyes, I’ll whisper ‘fuck ms’ and hope that the universe is listening 

    Tens years and a lifeline 

    Ten years that we’ve been married 

    It’s been so much longer though hasn’t it?

    Sixteen years together

    It feels like both a lifetime and not enough time 

    I didn’t know then the difference you’d make in my life

    Though I should have 

    Looking back I should have noticed the way the air felt different

    Thicker and somehow more crisp

    How did I miss the way time both stopped and started going by so fast 

    I should have known my life wouldn’t be the same

    I should have known then that only you could make an outsider like me feel unconditionally loved 

    Only you

    I didn’t know because I didn’t think unconditional love was real outside of maybe a parents love for their baby

    Though I should have known better when I met you

    Nothing was the same after that

    Looking back over these years

    We’ve been through so much

    How did we survive it all?

    So many ups and so many downs

    The only constant has been you 

    Exclusively you

    You’ve seen me at my very worst too many times to count 

    And yet you’re still here

    Always just you

    I must have done something so very right to deserve you

    Whatever it was

    I know it wasn’t enough

    I’ll spend my whole life

    Thanking the universe for giving me you

    Only ever you 

    ‘And I’d choose you; in a hundred lifetimes, in a hundred worlds, in any version of reality, I’d find you and I’d choose you.’

    ‘ I love you without knowing how, or when, or from where. I love you simply, without problems or pride: I love you in this way because I do not know any other way of loving but this, in which there is no I or you, so intimate that your hand upon my chest is my hand, so intimate that when I fall asleep your eyes close.’