Rest well Gordie


It was just a matter of time

I knew

You warned us

Gave us a last memory

To hold onto

You gathered us round and we watched like children

A magical night 

Performing your last goodbye

I was grateful for the chance to whisper my thanks

And yet all the same

The loss is just too heavy

And somehow life…

It still goes on 

In the only way it can

With your words

With your music

To get us through

Another night

Waking to see what the morning has brought us


Already I know 

Tomorrow won’t be any better

Because 

It will never bring another you

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The coldest it’s been

A cold snap ends

And the warmth comes creeping back

Into your limbs and bones

Warming you up from the inside and out

Until you can’t remember how cold it ever was

That’s what depression is like

It takes over and it’s the coldest you’ve ever been

And it seems never ending

It’s so all consuming

And you can’t even think about all the other people who are just as cold

It’s painful and numbing all at once

It hurts your cheeks to smile

And your tears are too frozen to even start their descent

Then suddenly and without warning 

It changes

The numbness fades to tingling 

Like a reminder that the body is still alive 

Cautiously you move forward

Not knowing when the cold might return

When

Not if

Because it always comes back

You know it will 

Greyer and colder than you remembered 

It doesn’t matter if the thaw lasts for a few days or a few months

It’s like you forget just how fucking cold it can be

Until you wake up again and it’s minus 40 and you’re under 6ft of snow

Everything is hollow and heavy at once 

And it’s no wonder

That you can’t remember what the sun feels like on your skin 

Or the last time you laughed

Because your heart isn’t just frozen 

It’s empty instead

Truth Be Told

https://www.facebook.com/TruthBeToldMS/
A lovely new friend of mine started a podcast about life with MS. You don’t have to have MS to appreciate Marie’s story and her awesome sense of humour (or how her Scottish accent peaks through sometimes 😬). Marie was diagnosed in the 80s, long before I was but the feelings we share after diagnosis are the same. Have a listen and step into her shoes for a moment. 

‘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

Alive to the universe. Dead to the world

It’s my birthday today.                          I never do well with these.                   I dont know why.                               Too much expectation?                       On myself of course                          Not the day.                                  There’s nothing anyone around me is doing wrong.                                   It’s me

36 years old.                                      And at every age along the way           I thought to myself                                By this age,                                               I should have…                              Should have done more.            Should have had more.              Should have been more

I’m not sure where this feeling of never enough began.                            I only know it persists.               Despite my best intentions.   Approaching every birthday I think to myself                                            This will be different.                       This will be the birthday that I’m happy and content to just be.     Where I will simply look forward to the future.                                        With no expectations.                    Only hope to guide me on

Every year                                    During the last week of September.    I find myself slipping.               Slipping into a bad mood.                   A dark place.                                            I try to break the cycle.                         I force myself to see sunny skies.  And happy clouds.                             But instead                                          All I see are gloomy skies and threatening clouds.                          And I know my birthday is coming up again.                                 Reminding me that I’m alive to the universe                                            Even if I’m dead to the world 

People wonder why I make it such a big deal.                                                    I wish they could see the battle inside.                                                      Because it is a big deal.              Where I fight against the darkness trying to take over.                      Where I rail against the face looking back at me in the mirror                    To stop being so fucking sad.               I close my eyes tightly.                      And wish it hard as I can.                  To just be happy for once               This birthday                                    This time.                                             This year.                                              It’ll be different.                                   I’ll be different
And                                                    Every year                                   Leading up to this day.                     The days feel harder.                       The nights feel lonelier.                    The world seems colder.                 And when it’s time to close my eyes.   And wish wish wish.                         My wish is the same as always.  Despite years of never coming true.  Fuck it.                                                     I wish for it anyway.                         This could be the one time the wish is heard and granted.                            I close my eyes.                            Tightly                                                Tune out the noise around me.           I hold my breath.                              And I let it out slowly.                       And I wish.                                        Once again.                                              I wish to just be happy.                  Even                                                      Just a little 

Sipping on chemical cocktails

I’m what the psychiatric world calls ‘medication compliant’

That means I take the drug cocktails prescribed by disinterested doctors like a good girl 

Open, swallow, repeat

It started with just one pill to take the anxiety I was feeling away

Then it doubled and tripled

And to get better I had to get so sick

Nauseous and numb 

Hospitals and late nights 

Feeling like an outsider in the psychiatric wing

Listening to the screams and cries of people 

While I sat frozen in fear and silence

Then they added another pill to the mix

You know…

To deal with the depression the anxiety had dropped me into

All the doctors with their notepads and padded wallets from pushing pharmaceuticals

Pharmaceuticals where reading the side effects were like reading the symptoms of the disease it’s meant to treat

Open, swallow, repeat

And then there’s a magical white pill that absolves me of everything including the intensity of feelings

In the fog of it all, are the self righteous people who preach medication isn’t the answer

To questions they know nothing about

Like

Why can’t my brain just fucking stop?

Why can’t I just be fucking happy?

I wouldn’t wish even a minute of a panic attack on even them

I wouldn’t want even them burdened with the weight of depression 

I worry about zombie apocalypses and World War Three

Not for the risk to humanity 

But of how I’ll get my medication 

How will I beat the zombies and the army when I’m going through withdrawal? 

When I start panicking

When I start falling

Open, swallow, repeat

Never miss a dose

Like a good patient 

What would my brain be like without all the medications? 

I picture it like a flickering light bulb in a bad storm

Thunder, lightening

Flicker, flicker 

Over and over again

Like a mouse running on a wheel

Never going anywhere

Running towards nothing

Open and swallow and repeat

Until…

The

End

Numbers 

Almost 5 months post Round 1 of Lemtrada  

Four monthly blood tests

Four times I’ve panicked about going for blood work 

Four times where I did it without a panic attack or fainting 

Four times I’ve gotten good results 

Four urine tests where I didn’t pee on myself

Four urine tests with good results

One time where I saw my neurologist who said it was way too early to determine if the treatment was successful

Twice He wouldn’t tell me how many lesions I have active or not

Twice I was told my vision was better

Countless number of times I’ve been a heaping crying mess 

Eight months until Round two 

Twice I’ve thought aloud that I shouldn’t have done the treatment 

Two consecutive weeks at work where I felt strong and unbreakable 

Two consecutive weeks where I didn’t take a sick day

Countless times I’ve thought ‘I just can’t do this’

One week that was really fucking hard

Numerous times during said week where I doubted how long I could continue ‘this’

One time I had to cancel travel plans

One day I called in sick 

Countless times I’ve laughed, smiled and been happy to be at work or around people I like

Three times I was awake most of the night

Too many times that food had lost its flavour

One breakdown since being advised to refrain from being tattooed until further notice 

Innumerable days I’ve gotten up, dressed and left the house

Zero

times

I’ve

given

up

I don’t know whether I’m the boxer or the bag

The doctor asks if I feel that I have people in my life who look out for me

I am stumped by his question

I’m not sure what the right answer is

I hate feeling stumped 

I don’t know what answer he is looking for 

Do I go with what I think he wants to hear?

Sure, I have people in my life that watch my back

Do I go with honesty even if it makes me look miserable?

No, I know people care about me, but at the end of the day, I’m in this alone 

Are we supposed to feel that our loved ones will be so proactive as to protect us? 

It makes me wonder do people out there actually feel like someone is looking out for them?

Like some sort of guardian angel…

Do people think that their loved ones are so selfless as to be on guard for them?

Are we that selfish to think that people are so proactive in their love for us that they uphold some sort of duty?

Do I sound like a despondent depressed person?

Is he going to think I need way more help than cognitive fucking therapy?

I mull his question over in my head

I swirl different answers around on my tongue

Trying them on for what feels right 

I come to an answer I think I can live with

That I won’t kick myself for

It’s on my lips

And I can’t say it without a break in my voice

I try once

Twice

Shit

That makes me sound so…

Weak

I decide I don’t want to answer this

It doesn’t mean anything

It doesn’t say anything about me

About my mental health and wellness

Who comes up with these fucking questions anyway?

What box does this check off on his assessment of me

But

If I tell him that I don’t want to answer

It’ll make me sound more freakin insane than I think I actually am

So fuck it

I can own up to my shit

I’m good at that

And you know what, I don’t need anyone to look out for me

I’ve always carried the strongest shield 

The thickest armour 

So what if I’m usually the one pointing the gun on the other end?