It’s never too late

A year and a half ago I only had an appreciation for Art other people created.

I always had creative urges within me.

To do something with hair, make up, my room, my body…To just see art around me.

And then when I needed it most

The ability to create art came to me

I was 37 years old

This wasn’t the way I thought my life would turn out.

I thought I’d be an old cool social worker working with disadvantaged youth…

then life happened…

Maybe through art I’ll find a way to become okay with that.

Maybe this is all part of the story of my life…

Quality Of Life

What defines quality of life?

Society would tell us

It’s a combination of good health, secure economic and housing status, family and friends and recreational activities

Reading over the aforementioned characteristics

It doesn’t seem like achieving a decent quality of life would be difficult

But all of that changes when you have a chronic illness

Especially one like MS

It doesn’t usually happen over night or in the blink of an eye

But over time

An MSer’s quality of life deteriorates or at the very least changes dramatically

Comparing myself to those qualities of a good

I can’t help but think I’m a little doomed

I don’t have good health

My economic security is interconnected to my chronic illness and changed greatly in the last few years

I’m lucky that I’m secure in my housing

My recreational activities have become limited

Friends and family especially during these trying times

Are not very accessible

And in the spirit of

transparency

I was never a very dependable friend

So these days

I can’t say I expect much from people

Anyway both family and friends come with their own sets of challenges

I recently had to take Gabapentin for a sensory pain I was having

The pain reduced probably by more than half

But my quality of life suffered

I felt lethargic and down

I didn’t complete any art for several days

I was pretty much restricted to my couch

So I was faced with the dilemma in making a choice between quality of life and pain management

I kept thinking

What’s the point of living if it consists of being like a zombie?

Granted I’d be a zombie in less pain

But a zombie nonetheless

I guess

In the end

I’d rather experience pain

And live

And doesn’t that just perfectly sum up my life?

Some days are just like that…

I guess this has become like a journal for me

I write here and I don’t care who reads it

Or who doesn’t

It’s cathartic

In ways that I can’t even express

So Dear Diary,

I had a bad day

Maybe a bad few days

After increasing my dose with the gabapentin

It had a really sedating effect on me

I take a lot of other meds so it seems with the increase

I was just being knocked out

So I’m back on the one pill

Still in pain

So I’m not sure where that leaves me

I called the clinic to inquire about a lesser dose

So we’ll see

I also had my monthly labwork

It’s for both Lemtrada

And for my low platelets

The nurse came to the condo again

It didn’t go well

A vein blew

If you have a blown vein, it means that the vein has ruptured and is leaking blood. It happens when a nurse or other healthcare professional attempts to insert a needle into a vein, and things don’t go quite right.

Healthline.com

I’m in a lot of pain

My left hand

My right arm

Today life is hard

Tonight I just want to close my eyes

And hope that when I dream

There is no pain

No fear

No regret

‘Life is a a journey I don’t have a map for’

MS symptoms are weird and scary and often come at the worst times

My initial symptom was optic neuritis which is an inflamed optic nerve and caused pain and blurriness

Along the road

I guess I’ve been fortunate that my mobility hasn’t really been affected

I don’t know if sciatic pain is associated with MS but that’s affected my mobility the most

Fatigue has been a constant

It’s not your regular tired after a long day at work

It’s more like a body draining exhaustion

Like you ran a really long marathon

But all you did was shower

And no amount of rest makes you feel less tired

I get a lot of headaches which no one has been able to explain the root of

But they happen often and last for long periods of time

I also have a lot of neck pain which radiates upwards into my skull

I’ve had numbness come and go throughout the years

Sometimes it just happens

One time I was going down the stairs at my old house

And my feet just stopped working

It’s like they weren’t even there

I fell down the stairs

That was a surreal feeling

The heat has long been a problem for me

Like the perfect weather for a relapse

And if you throw some stress into the mix

It becomes the perfect storm

I’ve had some burning mouth symptoms and itchiness that have both come and gone

More recently

I’ve had some pain on one side of my face that I was unsure of

But no real direction was provided to me

And a new one is this weird burning in my upper arm area

It is so severe that I made my partner examine me for any outward injuries

Of course there were none

It doesn’t feel like a sore muscle

It literally feels like I had burned myself with a hot pain and every time something rubs against it

It just exacerbates the burning pain along my arm

MS is often a lonely isolating struggle

Your family doctor doesn’t really know much about it

And the neurologist doesn’t really care about your day to day symptoms

So where do you turn?

It’s really easy to feel lost in the disease

It’s like someone has blinded folded me and dropped me off in the middle of nowhere

I don’t have any travel companions or anyone to help navigate

Now I’m somewhere in the middle of this weird nowhere land with MS

And I would just like a fucking map

That’s all

Pity party of one

I’m sick of my body being so broken

The nurse just left

I’m laying down with an ice pack on my hand

She got the vein in my hand but push inreally deep

The veins were rolling

The blood was oozing out so slowly

I could feel myself becoming nauseous

I felt weaker as she took an extra vial bc she wasn’t sure there had been enough blood before

I don’t get it

It’s not a lot blood

But I feel drained

Completely

I’ve been doing this for so long

I hate how it’s not easier

My hand hurts

No

The inside of my hand hurts

The vein

That I shouldn’t be able to feel

I hate how wrong that feels

I hate that I felt the need to apologize to her because of my shitty veins

I hate that it feels so unfair

I hate how things seemed to have piled up after the MS diagnosis

I hate that I still have to this for at least another 3 years

I hate that I did the Lemtrada treatment

I hate that I got ITP as a result

Most of all

I hate that I’m crying about it now

Me, the virus and a whole lot of free time…

It’s been awhile since I last wrote

There’s been a lot to process and adjust to

I was advised pretty early on to stay home

Which I’ve done

I’ve been home for 43 days

Every day I’ve struggled with anxiety and/or depression

It’s been one thing or another

As someone with mild agoraphobia I find it pretty ironic that being cooped up has me feeling anxious

Now all I want to do is go out and see people

I’ve had a few meltdowns

I feel afraid that if I do catch this virus, I’ll be one of the people that doesn’t make it through

I’m afraid that if it comes down to it

And we’ve run out of ventilators

I’ll be cast aside for a healthy persons survival

I’ve often thought and regretted having done my Lemtrada treatment

Which has made me extra vulnerable at this time

I keep thinking that if I hadn’t done it

Then maybe I wouldn’t have to be so cautious

I wouldn’t have the added worry of the blood disorder that I got as a side effect

There’s a whole lot of what ifs and coulda beens

It’s the lack of control that is particularly anxiety provoking

Which I’m sure is the case for many people

Who are not anxiety sufferers

I’ve been thinking a lot about the kids and youth who aren’t in school

I feel sorry that they’re stuck at home and I worry about the impact this will have on their mental health even when this is over

I keep thinking that the repercussions of this will be felt for many years to come

Economically, socially, emotionally…

And well

We’ve been pretty lucky thus far

We’ve been spoiled

Living in a society and part of the world where we don’t have to worry as much as others

So I’m not really sure I have a handle on how to adapt to this weird new ‘normal’

I’m not sure anyone does

I know that I can only take it day by day

Minute by minute

I can only focus on the right now

I can’t worry about tomorrow because it’s not here yet

I am grateful for being able to make art

I am grateful to have my partner being my contact with the outside world (for groceries and meds and etc)

I am happy that my family is still healthy and safe

And more than anything

I am so fucking grateful that Covid-19 didn’t happen last year amidst losing my mind and all that 😬

Stay safe everyone

‘The woods are lovely, dark and deep…’

I don’t know if humans are really equipped to face their own mortality

It’s just such a foreign concept

It’s the opposite of what we know

We breathe without thinking

It’s automatic

To think of our own deaths

Seems just wrong

With MS I don’t really have to think about it

It’s a lot of things

But it’s not fatal

When I was diagnosed with ITP (rare blood disorder) this past summer

It seemed surreal

I could die if I got cut

If I fell

The slightest thing would mean I could bleed to death

I remember when I was still unsure what was going on

Feeling certain that I was gonna die

It was scary and unknown

Clearly

I survived

But every time I find a bruise…

Every time I get my bloodwork done

I’m faced with that same thought

Have my platelets have dropped dangerously low?

It’s sort of become a scary new reality

And not entirely unknown

However this whole COVID-19 is different

I knew I was at a heightened risk

I’m immuno compromised

I have two autoimmune diseases and a rare blood disorder

Plus the treatment I underwent for my MS weakened my immune system

Seems like the odds are stacked against me

So I’ve been practicing self isolation since March 15

I won’t lie

I’ve been scared

I keep hearing about the people dying have preexisting heath conditions

As if that makes it more palatable

Like it makes it ok

I got an email from my super amazing hematologist

She reaffirmed what I already sorta knew

I’m at an increased risk for infection

Because of the MS related treatment and ITP

Now I’m scared all over again

I’m doing the best I can

Not leaving home

Taking care of myself and my sanity

But I can’t help but feel afraid

What if this time I don’t escape death?

What if this time it catches up to me?

What if

What if

What if

I know I can’t live my life based on what ifs

But I can’t pretend they don’t exist either

So I’m caught in this weird limbo

Between focusing on what’s happening right now

This tv show

This art piece

This blog

And

The world of what ifs

What if I catch this virus?

What if death catches me?

I’m not ready to face death

I’m not ready to face the mere thought of death

‘I have promises to keep,

And miles to go before I sleep,

And miles to go before I sleep.’

‘…how blue the sky appears…blue enough to bruise a heart.’ Sanober Khan

Every time I scan my body for a bruise or petechiae

For the rest of my life

I’ll revert back to this past summer

And the disdain

I felt for my body

For betraying me

Yet again

I thought we’d come to an agreement after I lost my fucking mind in January 2019

I thought we were cool

Ready to coexist

Always together

Anxiety

Panic

Depression

MS

All of it

We were going to get through it all

But those damn blood bruises

A warning sign that my body wasn’t holding up its end of the bargain

Now even though I’m in some sort of remission

I scan my body

Hoping to not see those blotches on my skin

But when I do

Like this evening

I’m suddenly back to Florida in August

Angry

Afraid

Alone

With a body that was turning on me

A body that didn’t feel like mine anymore

I can’t help but miss the days when a stumble was just a misstep

And a bruise

Was just a fucking bruise

‘The Happiest Place On Earth.’

Today is Joey’s birthday

Last year at this time

I was living with my parents

My mental state was super fragile

We had cake for his birthday at my parents house

I remember trying hard that day

To put a smile on my face

To be brave

To not be selfish

For Joey

Because he deserved so much more than what he got

Because I always felt like we could have been so great

If not for all the obstacles

My challenges that have disrupted our life together

But today

One year later

We are celebrating his birthday at Disney in Florida

Joey gets to be happy

I feel good

Maybe sometimes magic happens

Maybe the universe and planets align

Maybe I worked my ass off to get to this point

Whatever

It doesn’t even matter

Bukowski wrote: ‘What matters most is how well you walk through the fire’

And I did

I walked through the fire

And survived

Sure I have the scars to prove it

But who doesn’t?

I’ll be in Disney this afternoon

Indulging my inner kid

She deserves to have some fun

Even if it’s a moment

I’m going to close my eyes really tight and try my best to savour the moments

I deserve it

So does Joey

PS. Happy birthday Joey 🖤

‘To be calm is the highest achievement of self’

Today is my anniversary

Notice I didn’t write ‘ours’?

Because this one

Well it’s entirely mine

Today marks exactly one year since I would rather have died than continue to live in the state of panic I was in

It might seem dramatic

I don’t know if I can explain the pain I was in

I remember my mom talking about how I was then

And she winced recollecting the sound of my crying

It was without a doubt the worst time of my life

That’s saying something

Since I’ve been through so much

Its strange to some people

That I would pick Multiple Sclerosis and the unknown

I would pick ITP and the biweekly bloodwork

I would choose those things in a heartbeat

I would choose those things if it meant never having to go through a mental health breakdown

Today

As I write this I’m in a much better place

Both literally and figuratively

I’m not freaking out at Humber’s unequipped emergency department

Pleading

No

Begging for someone to help me

Today

I will not focus on what I couldn’t do then

No

Today,

I’m at my home

That I share with my husband of 12 years

My two dogs

Vinnie and Benny.

I woke up this morning

I brushed my teeth and washed my face

I had coffee and breakfast

I rearranged some furniture

I did some art

Now I’m writing this blog

It’s all so unexceptional

And I am so fucking grateful