One May Have Good Eyes Yet See Nothing

I started to write an update as it’s been two weeks since my last infusion day…

But everything seemed so trivial when I saw it typed in front of me

There’s so much that I want to say and yet it doesn’t feel like it would amount to much

So I’ll make this brief and say the only thing I’ve really been wanting to say:

I’ve been watching TV like all day every day

The bingeing kind of TV watching

The kind I’ve been unable to do in so long

And I was scared to say this aloud or type it out

But fuck it it’s my blog after all

My eyes don’t hurt

I’ll say it again for the people at the back

MY FUCKING EYES DON’T HURT!

I can’t remember a time when they didn’t hurt

It’s been that long

How crazy is it that I can barely remember the before MS version of me

I’m not foolish enough to think this is permanent

But for now I’ll relish in this moment

Temporary and short lived or not

And if it all comes back in the blink of my eye…

Write. Write until it stops hurting.’

-Anais Nin

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Hi my name is Angela and it’s been one week since my last infusion…

It’s been up and down

Steroids really fuck with my entire system

Most of the physical side effects have dissipated

Left over is irritability

More so than usual that is

I don’t know how last time around I spent an entire month in isolation

I’m seriously going mad inside

I’ve watched shows, played around with my hair, cleaned, planted some herbs on my terrace and slept

And thought

A lot

I’ve been thinking about what’s next with work, how the kids are doing, if this treatment will work, the upcoming Paxil withdrawal, how they really do get the caramel in the caramilk bar

And the list goes on and on and on

I’m not gonna lie

The Paxil thing has been at the forefront

I have been totally obsessing over it

I’m terrified

But that’s another blog entry altogether

Right now

I’m trying to make it to two weeks post treatment

And then I will rejoin the world

If it’ll still have me of course

Which has always been debatable

At best

Like me

Temperamental

At best

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?

🙌🏼✊🏼✌️🤞

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. ❄️❄️❄️

No pain

Been in bed for a few hours and feeling drained to the bone but I wanted to jot some notes down.

Today was day 3 of Round 2 and the end of the treatment cycle. Hoping I will be among the many who haven’t needed a third cycle.

Today was comparatively easier than the last two days and had my awesome zen and calm sister by my side today who was a super caretaker.

I had one major spike with blood pressure where it went up to 160something over 111. But managed to make its way back into safer territory.

I was nicely drugged up for most of the morning into the early afternoon and felt little more than the Sahara desert of dry mouth and throat.

While doing my infusion I met a fellow MSer who was getting Tysabri treatment (which I was ineligible for due to previous exposure to a virus). This Misfit of a warrior has been battling MS since she was 17 and has been through her hurdle of using a walker and I’m sure much more but has since done well with Tysabri. Wishing her and everyone else on this weird fucked up ride of MS, nothing but strength, courage and good vibes.

My nurse Christine today was excellent as were the other two and I even got to see Nurse Amanda who rocks!

I hope this made some sense as I’m pretty doped up at the moment. 🤤

I won’t even begin to describe how many pics had to be taken of me throwing up the round 2 day 3 hands. I just couldn’t get it right! You’re welcome world!

But I just wanted to say I fucking did it! I did it! I can’t believe I did it and yet here I am with the bruises and soreness to prove it.

All of you in real life and in the cyber world have made my journey somehow a little easier, a little less lonely and have given me a whole lot of support. Much love and respect to you all.

Although there is a slight possibility that this may be the drugs speaking or just allowing me to be more honest, either way take it while you can. 😂

Day 3 has made for an achey, tired and woozy little warrior.

Who is off to bed in hopes of deep blissed out sleep and with whispers of hope on her tongue for a better tomorrow.

🙌🏼✊🏼🤞✌️

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 🙌🏼✊🏼🤞