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

‘Let’s go to Never Land and never come back till forever ends.’

Yesterday I dreamed I was free

I could move freely

I could fly anywhere

My mind was a safe place

It was like a children’s playground

That I was free to explore

I could stand in the middle of the universe

With my arms outstretched

My head lifted to see the sky above

My eyes wide and bright

The world I saw was clearly defined but with no sharp edges

I could see kindness pouring out of strangers faces

I felt warmth

All around me

It was like having some soup on the coldest day of the year

And in that moment every thing is just right

Even if it’s only soup

And it’s only a dream

But morning comes too fast

And the sun is too bright and it hurts my eyes

And it’s too hot and my arm throbs

And nothing feels as soothing as that soup did

I woke up

And all I see are sharp edges and corners that lead to scary places

People aren’t so kind

And I’m warned not to go outside

And the only place I can stretch out and look above me

Is on my bed

And so all I can do is

Hope that when sleep takes me

My dreams are about playgrounds and hot soup on a cold day and kindness all around me

But maybe if I close my eyes really right

I can stay in that dreamland just a little while longer

Just another uninspiring sick person

This is how I look when I’ve been waiting a week for the MS CLINIC to call me back after reporting a new symptom. I’m not surprised but I’m disappointed. Of course I want to live in a world where MS doesn’t exist but im not a dreamer so what I actually want is to live in a world where people with all types of illnesses can get the help they need. Especially when they reach out. Twice. It’s hard not to feel abandoned and isolated when literally no one can offer you help. Yes I know be strong, keep fighting and all those other phrases meant to motivate…but sometimes I want to lay my sword and shield down and just be a scared vulnerable person who sometimes just needs some help. This is what it’s like having MS in Canada, the country with one of the highest rates of MS. -rant over

Fuck MS

‘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

‘I used to be somebody’- NIN

I’ve been off of work for two years

On long term disability

Every day the probability of returning to my old job felt further away

Yesterday I received an email from my employer

Officially terminating my employment

It hit me hard

You might think it’s no big deal since I’ve been off work for so long

You’d be wrong

I felt like I couldn’t breathe

I reread the email so many times

The words blended together

Floating on the screen

They didn’t make sense anymore

I worked there for 6 years

I’ve been working in this field for over 12 years

Now it’s over

Officially I guess

I’m no longer a youth worker

I don’t know what I am

My name is Angela and I used to be a youth worker

I woke up thinking about my nonna

I don’t know why…

So I’d like to share with you a little about my nonna Concetta

She wore black for like 50 years after my grandfather passed away

She used to have really long hair

I remember being a kid and watching her in wonderment comb it and then put in a bun

She never wore it down so I felt like I had gotten a peak behind the wall

She took care of me during the school week

My cousins and I would go home for lunch and she’d be always be ready for us

It’s funny to me now

But back then she never missed a lunch

She always sat with us

She didn’t eat

I don’t know when she ate her lunch

But during our lunch time as we spoke to each other in English

She sat with us

Just being with us

I remember once my cousin was telling a story and said the word ‘stupid’ to describe someone

And she backhanded him lightening fast

Because she thought he had called her stupid

I remember hiding a grin and a laugh

One time my cousins and I took our time returning after school

We approached with a big group of friends

She was waiting on the veranda

Yelling and screaming in Italian

Putting her hand in between her teeth

I can’t explain it

It’s an Italian thing

Anyway

My cousin was so embarrassed in front of his non Italian friends

That he told everyone our nonna was a witch and had just put a spell on everyone

When no one was around she would sit on the couch and play cards on her lap

But as soon as someone showed up at the door

She’d sweep the evidence under the couch cushion

I don’t know why she didn’t want to be caught playing cards

But it always bothered me

Maybe she felt she’d be judged

I don’t know

As I got older I didn’t see her as much

I didn’t speak to her as much when I did see her

Embarrassed by my broken Italian that I had once spoken well

I’d say the usual greeting and whatnot

But didn’t really talk to her like I once had

We’d go visit her and my cousins would be there

We would sit at the table and laugh and tell stories in English

Reminiscing

And she would sit there

Like old times

Just smiling

Being with us

She got sick and older and frail

I went to the hospital to visit her

It was late at night

My cousin left to get us something from Tim’s

My nonna looked scared

I got up and went by her bed

She looked up at me and I whispered

‘Ti amo tanto Nonna’

She smiled weakly

Eventually she got better

She went home

I visited again

I got a text from my cousin

Saying la nonna had died

It actually autocorrected to the nonna had died

That stood out then

Like she was the only one

She passed away at home

I went to see her one last time

I went to her room

Where she laid in her bed

She looked so small

So frail

So unlike the strong woman I’d looked up to my whole life

There was so much I wanted to say

So much I wanted to thank her for

Time had run out

But it didn’t matter

She knew

I just didn’t realize no words were needed for her to understand

She always did

Ti amo tante e per sempre

The world, tomorrow

Its not the same world that I wake up to everyday

Some days

I wake up

And the world is a cold scary place

People use you and forget you

Even the ones that are supposed to love you

Sometimes I wake up

And it’s a stressful world

Filled with risks

And people I don’t trust

Sometimes I wake up

And it’s a lonely world

With no one around

There is one world I like waking up to most of all

On those days

I wake up

And it’s a beautiful world

Filled with kind people

And compassion

The colours around me are more vivid

The music I hear is perfect

The art I create comes easily

So I go to sleep

Every night

Not knowing which world I’ll find when I awake

It’s this big gamble

On the good days

I don’t want to close my eyes

In hopes that this world can last forever

On the dark days

I can’t wait to fall asleep

And

Hope hope hope

That tomorrow the world is beautiful again

That is what a life with mental illness is like

A hope

A gamble

A fear

A despair

And then doing it all over again