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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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 

    ‘New beginnings are often disguised as painful endings’

    I crawl into bed

    Close my eyes 

    And the first thought that comes to mind 

    Is that I am happy tonight 

    My heart that usually feels so heavy yet so empty feels like bursting with vibrancy 

    My eyes often so tired and strained feel the satisfaction you get after a rigorous workout

    My body equal parts listless and pained feels like it’s tingling with anticipation 

    My mind cavernous and sometimes chaotic is eager for what might come next

    I want to capture this exact feeling in this moment

    In the only way I know how

    Immortalizing it with words and reflecting it back into the world 

    Maybe someone might just be looking back

    In this moment I want to just let go and feel sure that the world will catch me 

    So secure and safe I feel tonight unlike nights where my muscles tense with fears of what was once and what’s beyond

    I want to wake up and bask in the leftovers and soak up the remnants of this moment 

    I’ll close my eyes

    And wake up in the morning 

    And without opening my eyes, I will just know that this morning is different

    With the beginning of a new day carrying only hope and possibilities 

    And not another fucking curse

    And she lived…

    So as some of you may know MS has caused ongoing vision problems for me

    I’ve had optic neuritis several times

    Each time it has stolen a piece of my vision 

    Only to return it scarred and less functional

    I used to be an avid reader

    ‘Used to’ 

    It makes me sad to even write that

    I would devour books so quickly and effortlessly

    I took that ability for granted

    I never thought there might be a time when I wouldn’t be able to

    I can still read

    But it causes pain and irritation in my eyes 

    So I started listening to audiobooks

    But it’s different now

    For some reason the books of before

    Don’t hold my attention through listening 

    So I listen to fluff

    I listen to romance audiobooks 

    With happily ever after endings

    The old me would have snorted and scoffed with derision at this shit

    But anyway

    That’s what I listen to these days 

    A few days ago I started listening to an audiobook that had tons of positive reviews 

    People wrote that it was sad and beautiful and romantic and they cried

    So I gave it a go

    The story progressed nicely

    The hero and heroine met and fell in love

    The heroines sister was ill and eventually passed away

    I thought to myself ‘that was pretty sad’ and was glad I’d moved past the sad part in the story 

    And then

    There was an incident in which the hero ended up in the hospital 

    And his nurse said he’d likely have to start a round of Solumedrol 

    Shit

    I thought

    I know what that is

    It’s a steroid for inflammation

    Don’t let this go there

    I kept listening 

    The heroine had heard of that drug before as well since her sister had battled Huntington’s disease 

    The hero and heroine looked at each other and the heroine asked, with tear filled eyes if the hero was sick

    The hero, with great trepidation and a heavy sigh (that only someone with a burden knows too well) states that yes he has a disease

    Shit

    I thought

    Don’t let it be what I’m thinking 

    He says he has Relapse Remitting Multiple Sclerosis

    Pause

    For me anyway

    I don’t know what the heroine said

    I don’t know what the hero said

    I stopped the audiobook

    I guffawed

    Seriously

    I fucking guffawed

    I got out of bed

    I turned on the lights

    I got annoyed

    So fucking annoyed 

    Why did this guy have to get MS

    MY kind of MS

    What kind of fuckery is this?

    Who fucking gets MS in a romance book?

    I felt cheated

    I passed the sad part of the book

    I wanted the happy ending

    I needed the happy part where everyone is happy and safe and healthy and the hero and heroine get their happily ever after

    I did not want to relate to the fucking hero’s sad shit

    Full stop

    I got annoyed and irritated when I found out I had MS

    When I learned that it was MS causing the blurred vision 

    Then after learning about MS and the possible course of the disease

    I felt fucking cheated

    This was not supposed to go this way

    I conquered anxiety

    I manage my depression EVERY damn day

    This was supposed to be MY time

    Even though I wasn’t reading romance books then 

    I’d read enough books at that time to know

    That every great heroine has to overcome a battle

    And I did

    With great difficulty

    With a lot of pain

    I was ready for the happy ending

    I expected it

    Where was my happy ending?

    I don’t mean the drivel with the love eternal and the wedding bells, 2.5 kids, house and a white picket fence

    I mean the part where I get to live out the rest of my life in peaceful contentment

    Feeling like a heroine 

    Cause I’d slayed my beasts

    And then it came to me

    This is why I’m so pissed off with MS

    So angry so much of the time

    Because I don’t know how this story ends

    I don’t know that the heroine is happy in the ending

    I don’t know how she’ll live out the rest of her life

    It’s like living in a perpetual cliffhanger 

    I don’t know how MY story ends 

    I know how I WANT it to end

    But MS came and put a big huge ‘WHAT IF’ across the page 

    I don’t want to worry about the what if’s 

    I don’t want to lose sleep over the what if’s 

    It’s too many blank pages 

    Some might say that’s the same for everyone

    But that’s bullshit 

    We know the most people will not lose their vision

    Most people won’t be wheelchair bound 

    (My two biggest fears)

    I want to hit play on the audiobook 

    And accept that the hero does have MS

    But I want to hear that the hero wins

    I need to hear that the hero 

    gets his happily ever after

    But what if he doesn’t?

    What if I don’t?

    So I’ve left it on pause

    To be continued

    It’s a picture of time frozen in place after which the hero and his love are together and he happens to have MS

    And I’ll leave it there

    An epic and everlasting ‘to be continued’

    Nothing bad has happened yet

    And everything is a possibility

    That’s my happy ending

    Distress lines

    I’m sitting here on my bed on hold with a distress line

    The irony is not lost on me

    I’ve called one of these before

    A long time ago

    I was scared then

    And I didn’t know what to do

    My anxiety was so bad

    I couldn’t leave the house

    And my panic attacks were so debilitating 

    I was so afraid of what was happening in my brain

    And the loss of control I felt

    It’s different now

    I’m not scared 

    And that makes it even worse 

    Somehow 

    I know what happens after the panic subsides

    And the anxiety becomes manageable

    Bearable

    But these other feelings and thoughts remain

    Like bitter reminders 

    And the inexplicable sadness is suffocating

    The quiet is haunting

    The pain is excruciating 

    And I do what we all do

    I reach out


    For someone to help me

    To make it better

    To stop the sadness so I can breathe

    To shatter the quiet

    To minimize the pain 

    It’s been something like 10 plus years since the last time I called a distress line 

    The only similarity between these two times, is the lack of hope I felt

    Hope for better

    Hope for different 

    Hope for a sense of peace

    There’s no hope in my heart

    There’s none in my mind

    There’s only the automated message reminding me that there are so many other souls out there tonight who can’t find any hope to hold on to either

    Somehow that makes me feel a little less sad 

    And the irony isn’t lost on me 

    The mighty dragon

    When I first started experiencing panic attacks, I read a book on panic disorder and anxiety and how to cope with it. 

    It spoke about it in euphemisms of dragons and how the more you fuelled the dragon, the stronger and more powerful it became. 

    All these years later and that has stuck out so clearly in my muddled brain. 

    When you’re the one with that anxiety problems, that’s exactly how you envision it: this powerful, fire-breathing and larger than life creature…at least that’s how I have always envisioned it. 

    What makes it so all-consuming, is that it’s a product of your own fucked up brain, and that means it can play upon all your biggest fears and insecurities because it’s the very one that invented them.

    I’ve learned time and time again that if I could just stop feeding the dragon, if I could accept the fears and not fight so hard against them, it would be uncomfortable but it would eventually dissolve into a puddle of memories. 

    It sounds simplistic. Stop fighting it. Accept it. 

    Let it run its course. 

    But that’s the ironic twist of it all…anxiety is all about the minds constant racing, conjuring up all the possibilities. 

    A therapist once told me that anxious people have an certain part of the brains that are lit up, unlike other people. 

    That people who are anxious are usually very intelligent and that’s what makes them analyze and ponder over every single fucking possibility. 

    So of course it would make some brutal sort of sense that turning off our brains would be the one thing that absolves our pain. 

    It’s like drowning but telling people that they will survive, the waves will cease..if only they stop struggling

    I wish that if I could accept it one time, it would be enough to erase all my future suffering.

    I can’t say it aloud but maybe if I write it out, like a silent incantation…it can come true.

    I’ll accept it, if it could just promise me back that it would be enough.

    I’ll drown

    Just promise to save me before the waves wash me away