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