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

11 months and an eternity

I have just received word from the MS one to one nurse that I have been medically cleared for Round 2 of Lemtrada!

I got this just as I was getting ready to go back for my monthly blood work after my failed attempt last week. And I survived it. ✊🏼

I will likely be doing treatment at the end of April. Its been a long hard year but I’m still here. I certainly never thought I was strong enough for something like this…but I did it, didn’t I?

And I can’t believe I’m saying this but I’m fucking ready so bring on round 2 motherfuckers!

Stay tuned,

A

It’s only MS who cares anyway?

I’m sitting here seriously flabbergasted that this is still happening

Since my last update

The union had a phone conversation with HR whom he described as being ‘defensive’

He stated that she referenced my attendance over the last two years as a ‘concern’

He told her firmly and clearly that what she was doing was against the law and that I would NOT be submitting any doctors note and if I wanted accommodations, I would ask for it

HR made some weak comment about us not being unionized yet

Which is untrue, we are unionized but have been unable to sign a collective agreement due to difficulty with our employer

He said the call ended without HR committing to anything and said something about them consulting their lawyer

In the meantime, what do you think yours truly began to experience?

Ding ding

You guessed it

A flare up (for all you non MSers, new symptoms or a worsening of symptoms lasting longer than 48 hrs)

Eye pain

Eye pain so bad that I have to keep the lights very dimly lit

And the Scandal series we’d so happily been watching has been suspended

Yup

A flare up that your beloved author has not had the displeasure of having in approximately one year

A fucking year, people

Does this mean anything dear readers??

Yuppers

It means that stress is a motherfucker

And

Stress may have been a huge contributor to this woman’s flare up

So with tense muscles and clenched jaw, I sent an email to work including HR

I stated that I may be experiencing a flare and while I await the MS clinics call to determine next steps, I would need some time off of work

And what should I get in response?

Some pithy platitudes to get better and a request for the doctors note I was supposed to get for them on February 8th

A request for a doctors note

After being reprimanded by my union

And reminded of my human rights

Obviously I did not respond and forwarded the message to the union

But I’m seething

I want to hit something hard

I want something to break and shatter

Remember that blog I wrote only yesterday?

What if the term ‘MS’ was replaced with ‘Cancer’?

Imagine this then:

Dear work,

The cancer that you have been aware I’ve been fighting since 2013. It is possible my cancer has returned. I need some time off to deal with this.’

And your employer of over 6 years replies with some bullshit sentiments and a fucking request for a doctors note to discuss your capabilities at work.

How completely and utterly insensitive

And very unlikely

Not impossible of course

But unlikely nonetheless

Common fucking sense right?

Back to regularly scheduled MS

And

Poof

That desire to degrade, downplay and harass a human being?

You know the feelings they can suppress for people who have the dreaded ‘C’ word

Well that shit is right back on the table

Because, despite that MS is Canada’s fucking disease

It is, after all still

Only Multiple Sclerosis

And that apparently doesn’t warrant compassion and you know following the fucking law

A very wise friend said to me today ‘If the term ‘MS’ was replaced with ‘Cancer’ would the reaction be the same?’

It’s baffling how in a country with the highest rates of MS in the world

Approximately 100, 000 people living with it

I know it doesn’t seem like that many people in the grand scheme of things

And maybe that’s why

So few people understand the depth of its disease

And the suffering and difficulties that people with MS encounter daily

Family doctors don’t often have a lot of knowledge around MS and are often little help as nice as their intentions can be

So we are often left to educate them

Can you even fathom that?

How scary and lonely a road it is when you’re the one who has to educate your doctor?

I won’t even begin to describe how little the average person has an understanding of Multiple Sclerosis

Your spouse, your kids, your siblings, your friends

You have to be the one to explain to them all the little nuances of a disease that you yourself don’t even fully understand

Employers have zero understanding of a disease that is listed as a ‘disability’ under the Canadian Human Rights Code

Baffling

It’s brutal to think of all the times people have reminded me that ‘your employer is just doing their job’

So like that wise friend of mine said

Imagine this whole ordeal of mine with work

Picture it in your mind

The HR person

The supervisor

The member of management

And you

And change all the times I’ve said ‘MS’ and replace them with ‘Cancer’

You have ‘Cancer’

The person at the centre of this whole debacle is fighting against ‘Cancer’

How much does the situation change?

Does your employer still question your ‘capabilities’?

Blame you for an undefined negative impact your attendance has had on the program?

Does your employer harass you?

Send you multiple emails on your sick day?

Constantly whip out your attendance stats over the last two years as ammunition?

Two years that you’ve been battling ‘Cancer’?

You’re in a fight for your life with a disease that is taking over your body

You want to go to work

And do the job you love doing

And now you have to fight against the people that sign your paycheque

The very people that question your capabilities

Can you imagine this?

But wait

You just have Multiple Sclerosis

And now

No one cares anymore

After all

You don’t ‘look’ sick