“In the midst of winter, I found there was, within me, an invincible summer’ -A.C

Round 2, Day 1 Down of Lemtrada treatment

The day got off to a rocky start as I woke up at the crack of my ass (aka 4am)

After taking the dose of Prednisone, I started experiencing intense leg cramps or spasms

Aside from that, Joey was my first guest to join me today and we headed out to the clinic around 745AM

I was disappointed to find that Sharmela was off on mat leave but was sooo grateful to have the awesome Amanda in her place

Amanda was a straight shooter and her calm demeanour aided my own to chill the fuck out

There were a few glitches in the beginning with a faulty line in that just spurted some fluid and has left a grotesque and slightly painful bump on my hand

Second shot went in fine

Did the usual Solumedrol dose

Yippee more steroids

And then an hour later onto Lemtrada which is delivered intravenously over 4 hours

Lunch was a tough sell and my appetite was wonky at best

There were a few scares

Namely my high blood pressure and accelerated heart beat

And the muscle cramping in my legs was at some points unbearable

But my good nurse doped me up and got me through it

We stayed for the roughly 2 hour observation time afterwards to ensure no major reactions occur

And thankfully they didn’t

Amanda wrapped me up and left the port in for easy access (😬) tomorrow morning

But all I feel is like the warrior I am wrapped up and ready for more battle

We got home around 530PM this evening

It was a long ass day and we were both proud of ourselves for having pre made dinners to be heated up over these next few days

I’ve now eaten a bit more at dinner taken more antivirals and can honestly say I rocked the fucking shit out of this first day

I was tired, cranky and spastic and I still made it through (blood splatters, trapped IV tube blood and all)

Yay fucking me

I want to leap on trees and scale gates and scream so loud that I lose my voice because I discovered something in me

Maybe only a mystery to me

But

I know I can fucking do this

I’m going to take more drugs cause I ain’t no hero and like Samuel L Jackson urges your damn kids to do, I’m gonna take his advice and ‘go the fuck to sleep’

👊✊🏼✌️

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The mind is a terrible thing to taste..

It’s too much

It’s too hard

It hurts too much

I’m too weak

I’m not strong enough

It isn’t worth it

You’re too sensitive

You’re too moody

You think too much

You need to let things go

They think I don’t try hard enough

They think I do it to myself

They think I should just get over it

They think I always feel sorry for myself

Mostly they’re right

I don’t want to feel like this forever

I can’t keep doing this

I’m so tired of all of this

I’m too weak for this shit

I’m just so tired

I wasn’t made out for this

Maybe if I didn’t spend as much time as I do battling the thoughts in my own head

Maybe if I wasn’t so hard on myself

Maybe if I didn’t compare myself to others

Maybe if I didn’t get lost in this sea of maybes

I can’t even imagine telling the youth I work with the same things that I tell myself every single day

And if they told me they were having those very same thoughts

I’d help them tear down every last one of those deceitful thoughts

I’d tell them that sometimes their minds play tricks on them

But that they have the power to change their way of thinking

By using evidence to prove those thoughts wrong

I’d say ‘you say you’re not strong

But you survived x, y and z’

And they’d look back at me not believing a word

And then I’d say

‘You say you don’t want to feel this way forever

What are you doing to change the way you feel? ‘

They’d hang their head, and reluctantly answer that they’re not doing anything to change their feelings

I’d respond with ‘You know it won’t happen over night

Sometimes the things that will make you happiest, take time and a lot of effort to get’

They’d look back at me

And I could see in their eyes

The minute

The second

That it clicks for them

That they get it

And they know that I’m right

That they have the power to change their lives

They hold it in their hands

They’ve always had it

They’ve just got to find it

And yet

Even after all these years

And all this time

And still

I can’t

For the fucking life of me

Find it in myself

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

‘In the midst of Winter, I found there was within me, an invincible Summer’

A very insightful friend recently asked ‘Angela, but what if the treatment works?’

And it occurred to me that I’ve been focusing on the week of infusions and the aftermath of side effects and never, not once, did the possibility of positive outcomes even enter this anxious and pessimistic brain.

So for transparency sake I’ll be honest here…I’ve always thought positivity was being fake, ignoring the real shit and focusing on the fairy tale. I would always say ‘I’m not a pessimist, I’m a realist’ and while I still believe part of that is true. I’ve also become aware that now for my survival, I need to not just dip my toes in the positivity ocean but take a full-forced running leap into it. Make-believe or not. It doesn’t even matter at this point. What matters is that if I continue to focus on all the scary treatment and every possible side effect, I’m going to either not do the treatment or I’m going to suffer my way through it. My eyesight is more important than my negativity parading as realism vice versa and suffering has never been something I’ve actively looked forward to. 
So here it goes. If the treatment works, the following will be possible:
-I won’t be in pain on a daily basis

-I can watch tv with Joey and finally watch all those shows everyone is talking about!

-I can go to the movies!

-I can go to the bookstore and BUY an actual real life book!!! (Aaaaaack!!!!)

-I can return to working five days a week (which means the youth will have more of me and my pay check will be what it should be)

-I can be relied on

-I can pull my own weight around the house and not have to depend on Joey

-Joey will be less stressed out and happier

-I won’t have to rely on medication to temporarily take pain away

-I can wake up in the morning and feel good

-I won’t sleep my life away, alone in my room

-With the summer and heat approaching, I can enjoy the outdoors (maybe even symptom free)

-I can plan to travel to awesome places 

-I can make plans with my friends and NOT cancel at the last minute (this is a big one for me) 

-I can walk my dogs

And last but certainly not least, there is a 75% possibility that I will be relapse FREE for the next four years!!!

I may need to reread this on a daily basis until it becomes my mantra