‘I’m afraid to be alone with my own mind’ -Sylvia Plath

Here goes…Everything

The compounding pharmacy has made the Paxil capsules for me

I picked them up yesterday

I will be decreasing by 4mg every two weeks

My dose was 40mg

Last night I felt really anxious

I keep thinking about how shitty I felt going on Paxil

I keep thinking about not being in control

I keep thinking about panic attacks

I’m trying to think about the benefits

Maybe I can lose the weight that Paxil helped me gain

Maybe I can stop sweating in the middle of an emergency cold alert day

And yet somehow

Those benefits just don’t stick in my brain

My brain that has been sponsored by Paxil for over 10 years

It’s not that I’m connected to Paxil

It’s not that I think Paxil has helped me

It’s solely the fear that is controlling me right now

The same fear that always controls me

That no amount of therapy or meds has ever really been able to free me from

I want to do things in life

That I do because I want to do them

And not because fear has made me choose them as safer options

And not because fear has made me avoid other things

Fear

In some ways I think this has always been my biggest challenge

Probably from a young age

Seeing my dad experience panic attacks

Seeing him not feel like he was in control

Therefore not feeling safe in someways

As I’ve gotten older

That control has gotten more important for me

And I need to hold it firmly in my hands

I need to hold it because if I don’t

The world will fall apart?

I need to hold t because if I don’t

I will fall apart?

I need to hold it because if I don’t

I won’t feel safe?

Sometimes I curse the level of self awareness I have

Sometimes it does nothing more than get me stuck in a thought

When instead I should be in motion

I know what is right for me

I know what I want to do

I just need whatever part of me that is holding onto that fear to catch the fuck up

But today

The warrior woke up first

And warriors aren’t afraid

I still don’t know what’s on the other side

But I took the leap

I’ve started the tapering

Let’s hope the scaredy cat version of me is not the one that wins

Let’s hope that this warrior side of me has grown strong enough to finally

Finally take back what is rightfully mine

My life

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I’m like the Tonya Harding of the non figure skating world

More specifically

I am the Tonya Harding of the sick persons world

Like Tonya, I’m not the easiest to like

Like Tonya, I don’t evoke feelings of sympathy

Like Tonya, I’ve had to work at everything I’ve ever wanted

Unlike Tonya, I know the war is with myself

No one else ever should a chance

I know that there is no outside force that can be changed which will miraculously make my own life any easier

Nor will it make me the perfect poster child for a winning MS campaign

Or the face of the next Bell Let’s Talk day

I’ve accepted that things will likely always be a little harder for me

It’s my cross to bear

I’ve learned not everyone has one

And yes they are indeed lucky for that

Would I change it if I could?

Without hesitation

Do I think that there is anything within my control that would make said things easier for me?

Not a chance

The cross I have to bear

It’s a big one

It’s heavy and solid all the way through

And I drop it often

I can’t ever lose it though

Because I know it’s mine for this lifetime

So I pick it back up

And march on with it

It never feels lighter or easier

But I get more comfortable with it

I still stumble, and I struggle

But I have learned something

That cross will always be mine

And so I bear that damn cross

That has my name so deeply carved in it

That it could only ever be mine

No doubt or question

Sometimes I think I was born with that fucking cross

It was always mine

It claimed me

Before I had a chance to even breathe

If only they gave out awards for worst sick person…

I am the worlds worst sick person

Specifically when I’m nauseous or feel like I’m about to throw up

My anxiety spikes

I feel like I’m going to die or go crazy simultaneously

Before you rush to sympathize and reassure me that I’m not, read on

I demand Joey stay beside while I ward off the evil nauseous feelings

But not move the bed in any way

I want him to keep his hand on me in someway so I know I’m not alone

But not too firmly

Lest his touch spur the nausea

I want him to talk

But not about anything to do with food

Which for a chef is like asking a new parent to not talk about their baby

And not too loudly either

The sound waves might make me hurl

Last night, I took Gravol and Ativan

And put an ice pack on my head

The lights off

And I asked Joey to tell me a story of when he confessed his ‘like’ for me

It’s a funny story

And always makes me smile

This time didn’t disappoint either

As soon as he gets to the part where he recalls telling me all those years ago that he’s ‘been digging me as more than just a friend’

I crack up

I was still nauseous

But it was better

He reminded me of how I planted a kiss on him

And he sprinted around the neighbourhood on such a high

Than he told me how because I was vacillating between telling him I liked him and not wanting to change our friendship, he was a nervous wreck

I remember that too

I was worried that we were too different

My dark to his light

I didn’t know then how much it would matter that he was my opposite

It seems simple now

The biggest fear was that we would lose a great friendship

I didn’t know then what I could possibly be gaining

The dude that puts my socks on when I can’t

When I’m nauseous the dude who tells me it’ll pass

Gets me ice packs

Regales me with stories from the past

Tries his hardest to not move the bed (which if you know him, you know is nearly impossible)

So yeah I may just be the world worst sick person

But who fucking cares if the one person I want by my side, can withstand the bumpy (read: nauseous) ride with me?

On the 5th, 6th and probably 7th day, She rested

It’s a rare time when I don’t lay in bed tossing and turning thinking things over

Like why my first grade teacher said I was too quiet

Or why I have a phobia of blood

But this week has been different

I fall into these really deep sleeps where I wake up feeling like my body is being regenerated

No single thought is tossed around in my brain for an unnecessary amount of time

It’s kind of an awesome feeling

It makes me feel refreshed

I’ve had some negative side effects mostly from the steroids

And steroids?!

God damn!!

I swear the way they can make the most mundane food taste gourmet is amazing 😍

And there is NO hunger like a steroid hunger 🐷

But mostly manageable through medications

I keep trying to remind myself that it’s totally okay if all I did today was shower or sleep

Then my mind tries to tell me that it’s not normal to sleep all day

But when the hell has my mind ever been right anyway?

And when have I ever cared about things being normal?

🙌🏼✊🏼✌️🤞

‘Piglet noticed that even though he had a very small heart, it could carry a rather large amount of Gratitude.’

While I can’t say for certain one way or another where the storm of powerful emotions is coming from

Is it the high dose steroids, the cocktail combo of everything else and now the drastic withdrawal?

A culmination of the last several months, much of which was unpleasant at best?

I guess it doesn’t even matter

What does matter, is that like Piglet, I’ve noticed that my heart can carry an enormous amount of gratitude

And I don’t think gratitude is meant to kept bottled up. It’s like having a present and never giving it to the intended recipient.

I want to lay out some honest gratitudes in a way that doesn’t trivialize then into mere platitudes So bear with me while I navigate these murky waters

In can be hard for people drowning to see the good, the things to be grateful for

But I’m going to try

I am grateful for:

  • My partner in crime. Through thick and thin. Sick and sicker. Depressed and anxious. I know I could live without you if I had to, but what a sad sad life it would be.
  • My mom, mother in law and sister for each taking time out of their days to spend a day at the infusion clinic. Mainly being my go getters and entertainment and in Connie’s case, my calm. You each played such an important role in this infusion week. I am forever grateful.
  • My friends, my family especially my dad who wrote a sweet note for me every day on Facebook and even called me Bella 😭
  • I am so warmed and surprised by how many people reached out through a text, a visit, a phone call, a message or a line on some social media platform. Going through any hard time is always made easier when there are people who for whatever reason show their support in whatever way they want and can.
  • I am grateful for each of my three nurses who took wonderful care of me even knowing they’d likely not see me again. They were kind, understanding and never brushed off any of my feelings or symptoms.
  • I am honoured to have spent my time with all my fellow fighters and warriors (of the MS variety or not). I wish there was a collective magic pot where we could each leave a small amount of whatever it is that makes us fight so that when one of us is running on empty, they can dip into the reserves. So much of our fight is done behind closed doors, in beds and in darkened rooms, and I hope that more of us can find the courage to join this crazy fight together.
  • Finally I am sooo happy to have a family doctor who could send a script to my pharmacy for some good sleeping pills, and you dear readers should be happy too. Because no sleep and high dose steroid withdrawals makes for an extra less than amiable Angela.

And who in their right mind would want that?

🙌🏼✌️✊🏼🤞

A look on the (very) (red) bright side

Why bother sitting in the sun for hours when you could just straightline 1000s of mgs of steroids to get that same sun burned look. 🤦🏻‍♀️😡😤It’s funny how the steroids are to help our bodies deal with the Lemtrada infusion but also seem to deliver the most obvious side effects. I’m now laying my head on an ice pack in a air conditioned room with a fan on. So essentially it’s the equivalent of hot humid Toronto day.Send cold provisions. ❄️❄️❄️

Day 2 got me like…

Super sleepy. Another great nurse, shout out to Matthew for dealing with me all day. Today the moms came with and not only kept me company but of course every other patient who came in for their much shorter infusions.

No major problems. Some leg pain, nausea and head ache. No appetite and extremely dry mouth and throat (weed smokers you know nothing until you’ve done this treatment).

PS I slept like a blissed out baby last night and am hoping the same drug cocktail would do the trick

PPS I heard from my employer, and I refuse to respond. She wrote some nonsense about not having had the chance to draft a confirmation of medical leave letter (that I took 3 weeks ago, but I’m bad at my job right). And wanting me to give them their phone like I’m gonna be doing that during this time. Pfftt 😤

Day 2 of Round 2 is done ✔️

1 more day to go 🙌🏼✊🏼🤞