‘In 3 words I can sum up everything I’ve learned about life: IT GOES ON.’

The last few years have held a lot of ‘firsts’ and ‘lasts’ for me

First time staying in a hospital

First time having to do at some points daily bloodwork, then weekly

First time I heard from a doctor that I could have died

Last time working

Last time feeling like a contributing member of society

First time participating in a art show

First time staying in a crisis centre

Last time trusting a specialist

First time selling art that my own hands created

Last time living in a condo (I hope) 😬

First time moving out of Toronto

First time having a postal code not start with an ‘M’

And all the firsts associated with COVID of course

Especially from a person living with a compromised immune system

I come from a place of thinking where nothing lasts forever

Sometimes it’s for the best

And sometimes it sucks but it ends anyway

I’ve decided to not renew this FUCK MS space for writing

It feels outdated

When I started FUCK MS

It was a place to vent and rant and just share my feelings around having MS

Obviously it morphed into so much more than that

It became a place where I could write about anything and everything

And I relished that

Then I found Art

And needing a space to write felt less important to me

Because I was sharing my feelings through every piece my hands created

Using poetry and broken images somehow become a way for me to say what was in my heart and mind

I’ve copied everything from here and who knows

Maybe I’ll write a book

Or something

Maybe I’ll be back under the Damaged Goods name

With something that feels more in tune with where I currently am

Regardless

Thank you to everyone who took the time to read the things that came from my muddled brain

Thank you to everyone who took the time to drop me a line

It was a lifeline for me

And no amount of thank yous will ever be enough

This space expires in January

So maybe I’ll be back

Who knows?

If anyone wants to reach me

Shoot me an email at damagedgoodsshoppe@gmail.com

🖤

Angela

Hope and all that could have been

What is hope?

When I read the following definition,

‘The feeling that what is wanted can be had or that events will turn out for the best’

It sounds far too subjective

A feeling

Wanting

Turn out for the best

If this was a gambling game

Who would take odds

Based on nothing more than feelings

Feelings impacted by beliefs, moods, opinions

And with an outcome that could turn out to be any which way

No guarantees

I don’t know

Maybe I’m too skeptical

Too cynical

Jaded

For hope

Or maybe

Hope is too vague

Too unrealistic

Too wishy-washy

For the likes of me

As hard as defining hope is,

Even harder is picturing it

What does hope look like?

I tried conjuring images of different things

Nothing exemplified what hope stands for

It all seemed too cheesy

Blue skies

Green pastures

None of which inspire

Feelings of hope

I guess if I try hard enough

I would say hope looks something like…

Eyes closed

Jaw slack

Relaxed posture

No tension in her body or features

Like she’s found peace

Or at least

Knows it’s coming to her

Calm

Serene

Confident

In knowing

That hope is tangible

And what she has hoped for more anything

Is hers for the taking

Maybe

One day

I will be able to close my eyes

And in a moment

Feel the tension leave my body

My breaths full

And Effortless

The racing thoughts fading away

The dull heaviness of depression being lifted

I wonder who that woman will be?

When everything weighing her down

Is finally gone

And it’s just her

The her that might have been

If life hadn’t turned her into someone else….

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?

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

36 Years Old And Still Not Okay

Sick and tired

Running a low grade fever

Closer to treatment I get, the worse I feel

I feel like I’m nonstop fighting a flu

Tired of feeling this way

But honestly, I can’t even remember a time where I didn’t feel shitty

Where I didn’t feel sick

Or just generally unwell

Mentally or physically

Even pre MS diagnosis

Facebook reminds me of all the statuses I’ve posted over 10 plus years complaining over one sickness or another

Is it possible that I’ve never been really OK?

And I know what the optimists will say:

You gotta be positive

Things will get better

But I have no evidence to prove any of that as plausible

In fact all the evidence I’ve collected throughout my life points to the contrary

The evidence illustrates a life filled with sickness and struggle as a result

Try as hard as I might

And I cannot for the life of me

Think of a time when I felt…I don’t know even just OK

But that can’t be possible right?

No one can always have been and continue to feel like shit, right?

Is anyone’s luck that bad?

So is it my mood then?…

This is like a chicken and egg thing

And I can’t figure out what came first

Did my mental health change one day…

And then my physical body became sick?

And when did this all happen?

Because I’m looking back through the screen shots of my life and I can’t think of a time where I felt…I don’t know…good

But ‘good’ sounds so insignificant

I don’t understand it

And I don’t know how to fix something that I don’t understand

Then I worry that I’ll never understand

So where does that leave me?

Sick

And

Tired

At only 36 years old

And still just fucking lost

In the chaos of moving and health shit, life keeps throwing curveballs my way.

<Below is response to my employers email demanding I complete the medical documentation regardless of being on a leave (that they not ‘properly authorized’ and with treatment approaching which will hopefully change my physical health>

Hello Employer,

Thank you for your email. I am  seeing my doctor on Thursday and will request that he fill out the forms. However I would like to note that I feel that having him complete the forms when I am obviously currently unfit to work is a waste of time. As of right now he has clearly indicated that I am not medically able to work. So any medical documentation done right now will be inconsequential and disregards the purpose of my treatment which is to get better. Regardless of my personal opinion and his professional one, I will ask that he fill out the paperwork again.

As EMPLOYER have been aware of since last year, I have treatment coming up very soon and it has been insensitive and has showed a lack of compassion in demanding that I do this before my treatment has occurred. EMPLOYER has repeatedly reminded me of my contractual obligation while showing no insight to the obvious difficulty that a long time employee of EMPLOYER is undergoing, while attempting to embark on a second round of chemotherapeutic treatment for the sole purpose of improving their physical health. The forms EMPLOYER have demanded ask questions that show no clear understanding of what Multiple Sclerosis is and how it affects its sufferers. 

I had hoped that an agency I loved working for and hoped to continue to work for a long time would have showed me more compassion and empathy instead of making me feel like a burden and drain on their resources. At this time all I can say is I’m disappointed with EMPLOYER, which as far as a contract goes, I understand means nothing. I have learned my worth as a result of having several years of experience in this field and as such have a thicker skin than most, however I hope in the future EMPLOYER can show its employees more understanding and sensitivity than it has shown me, because having a chronic and incurable illness is hard enough. Once again, I will request my doctor complete the forms EMPLOYER is asking for. 

Angela Gagliardi