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

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?

4 days down, 1 to go 

It’s been a weird trip of a week. Surreal and sometimes out of body like..until the anxiety slams into me and I come out of it reminiscent of adrenaline shot to an overdosing junkie.

The anxiety comes and goes at odd times and it feels like it’s just there to remind me…not always in an negative way but also in a ‘look at what you’re doing’. For example, the first iv was in my left hand and was sore and pinchy from the beginning when the nurse asked I told her how it felt and she wanted to change it to the other hand, we tried but I panicked and couldn’t continue. So we stuck with the original line. 

After last nights amazing removal, we agreed to try again in the right hand. And after all the anxious thoughts and panic, it was a success and it felt 10x better than the original one with minimal pain. Had I given less power to my anxiety, I would have spent less time in both unnecessarily anxiety and pain, you reminded me not pay you little fucker more attention that what you deserve. And that is to acknowledge the fucker’s presence, and let it fade into oblivion.

The rest of the day was fine no major humps to face aside from the occasional nausea and headaches all dealt with promptly by Nurse S.

As the day ended I was informed she would be joining me on my last day at a different infusion office and it literally made my smile just life up. She has been a tremendous support and I hope she knows how she made this week infinitely more manageable on me.

Tonight was rough. I felt beat down. It wasn’t just mental fatigue but it was all encompassing body drain. It’s what I would imagine any one would feel after a world weary battle. I feel calmer than I have in days and it’s no doubt a result of the week of things going on that has left me so depleted and for once it’s a good fucking thing.

I’m on my way to sleep and to everyone who reached out real or online or through or others or fuck even sent good vibes, a million thank you’s wouldn’t be enough. But your words and your peppy talk have helped me remember to keep to fighting through. So for you, dear reader, if all you did was read my blog or comment on social media or fuck even just thought about me. My heartfelt gratitude extends to everyone single of you. 

And to Team Angela (you know who you are, even the ones who were unable to take roster spots or the ones who provided me with excellent insights that I haven’t even explored

The darkness receded today. And for right now, that’s enough.

Life goes on,

Angela ‘Strong Like Bull’ 🐃