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

The saga continues…

So I guess I should start with where I had previously left off

I was really depressed after all that stuff at the meeting. Half of me wanted to quit and half of me wanted to just cry.

I received an email from my employer asking if to confirm the details of the meeting and the deadline to provide the doctors letter. You know so we can all work together 😒

I thought on it.

And then I got angry.

I emailed back on January 31

I asked for clarity on some thing I did not fully understand.

I asked for ‘clarity around the issue of a pattern of my absences. I asked what exactly does that mean? I feel like anyone with a chronic and incurable illness would indeed have a pattern of absences?’

I asked if an email was circulated when my coworkers called in absent or if it was just in my case. I asked them if the book I gave them in 2013 for employees on how to support employees with MS was reviewed in their attempts to make me feel ‘supported’?

I explained that felt unsupported and attacked at the meeting ‘when I was repeatedly questioned about my honesty and my capability, of which I have never shied away from answering.’ I explained that I felt I was being asked to reduce my work hours or face the consequences of calling in sick.

I let them know I would be speaking to my union to ensure that my rights continue to be protected.

And after all that???

Crickets

Since January 31

With the February 15 deadline looming for providing the doctors note

Since then, I’ve spoken to a lawyer from the Volunteer Legal Advocacy Program, through the MS Society.

This is a summary of that conversation:

•My employer is aware of my diagnosis of MS, which is listed as a disability under the Human Right’s Code.

•My employer asking me to commit to a five day work schedule without taking sick days is impossible from an MS standpoint and therefore ‘unfair’.

•My employer has a duty to accommodate to the point of undue hardship. They have shown that in the past they were able to do so by me taking unpaid sick days, working from home and putting a relief roster in place.

•He stated that his suggestion was that I do NOT provide a doctor’s note, however, if I wanted to, it should say something along the lines of: I do have a diagnosis of MS, and am capable of working 5 days a week, however due to the unpredictable nature of the disease, I may need to take sick days. I do not require a modified work schedule, as there will be times when I can work a full schedule, and also periods of time where I cannot.

•He also stated that if there is any recourse/reprisal any of this I can file a human right’s complaint based ion discrimination.

•He also said that what they are doing is unreasonable due to the circumstances of my disability, of which they have been aware since 2013.

You’d think one would feel relieved after that information…

I didn’t

I felt even more upset

That an employer would be so underhanded and clearly willing to skirt the law in an attempt to what? Get rid of me?

Sitting here even know

I’m shaking my head in bewilderment

The union is involved now although still somewhat minimally

I went to see my family doctor, for which my employer had to arrange coverage for my position and have me take a sick day and pay someone else for said coverage. 🙄

Like I said…bewilderment

My doctor wrote the note as he too felt that he could not be expected to write a note like what my employer was hoping for. His note is essentially what the lawyer has advised me on getting.

I’m home now

I still haven’t received an email

The union and lawyer have both said I should not submit the note

The union said if I haven’t received clarity by early next week, they would contact my employer

The lawyer asked what would happen if the deadline passed and a note was not provided?

I still don’t know

The union said there SHOULDN’T be any repercussions

That does little to assuage this anxious brain

Still I rise,

Angela

MS and the life I had

One day I would like to write about happy things

Rainbows and unicorns aren’t in my forecast though

I was called into a meeting by my employer to discuss my attendance and how it may be impacting the program

I felt a sense of dread

Who doesn’t when they get emails like those?

The meeting included my supervisor, her supervisor and HR who joined via phone bc she was sick. The irony wasn’t lost on me

Pleasantries exchanged

I felt the mood shift

HR stated that the school board had expressed concern over the attendance and how it is negatively impacting the class

I literally felt my haunches go up

Do I take days off? Yes

Have I noticed an impact on my youth?

No

And to be perfectly honest

If I had noticed such an impact

I’d of done something

Bc despite how HR made me feel by repetitively asking me to be honest with them

I have been

To a fault

I notify my supervisor and coworkers immediately

I tell them the truth

I don’t feel well

I’m tired

I have a sinus infection

Blah blah

HR says they want to support me

But can’t if I’m not being honest

I felt my head shake in puzzlement

She spoke words like systemic and pattern of absences

And I felt like I was on trial for something far greater

She asked me to commit to five days a week of attendance

I may have guffawed

I have MS I thought to myself

I recently underwent treatment to kill off my immune system

How the fuck do you expect me to commit to that?

Can anyone? Even a non-chronically ill person?

She said then I should speak to my family doctor to discuss my capabilities

Of which I’ve never been uncertain of

She made me uncertain

She said to get a letter

Absolving me of my absenteeism or giving me a stamp of healthy approval

I laughed when she said a month was too long to get an appointment with my doctor

She doubles as HR and a medical receptionist

In my bewildered state

I asked how the program had been negatively impacted

She said the relationship building was affected

I felt cold

I’m not certain of much

But my ability to engage the youth in the program

I’ve got that

The call with HR ended

I was left in a room with supervisor and management

I felt so fucking small

They asked if I had questions

I asked about the relationship building

They said it wasn’t about my relationship with the kids

But rather the one between the school board and agency

You know

The shit I don’t care about

I nodded absently

They said it wasn’t personal

They said my ability to engage with clients was top notch bar none

They said there is no question about how good I am with the youth

I hate this part

I cried

Stupidly

Embarrassingly

It hurt from the inside

And I couldn’t stop it

I cried because I felt like I was being held responsible

For something that I have no control over

I didn’t want to have MS

I didn’t want to be anxious and depressed

And generally broken

I cried because I would never want to do anything that would leave any negative impact on any of the youth I work with

Indirectly or not

On a side note

I’ve never had to take a break and stop writing once I’ve begun a post

It’s usually like a stream of consciousness

Flowing from brain to fingers

I’ve stopped once already in writing this last blog

Because the usually cathartic release I get from writing

Hasn’t been found in writing this time

It feels too raw

I need some time

‘We don’t even ask for happiness, just a little less pain’

Today

I feel defeated

It was time to go for my monthly blood test

And so I did

Without any problems

I waved bye to my favourite lab technician

She remembered to get the butterfly to take blood from my hand

She rarely leaves bruises

She remembers I need to lie down during the process

I forgot her name and called her by the wrong name

I hope she knows that her kindness has made a difference to me

Even though I still can’t remember her fucking name for the life of me

I walked out the doors and into the car where Joey was waiting

I sipped water

Like I always need to do

But always seem to forget to grab a bottle from home

You probably wouldn’t understand

It’s an anxiety thing

He asked how it went

Looking at the cotton ball taped hand

Proof that I’d succeeded

And then I felt the dam break inside of me

I started crying

Not hysterical

Not sobbing

Just an overwhelming feeling of discouragement and sadness came over me

Resulting in tears down my face

I kept thinking

Maybe I said it aloud too

I don’t remember

I can’t do this for another five years

I just can’t

The needle

The waiting

The results

Will this month be the one where I learn I have some type of cancer?

Will next months test reveal that I have something wrong with my kidneys?

Internal bleeding?

Everyone reassured me the monthly blood tests would get easier

But I’m like 8 months in

And I dread everything about this day and the week afterwards

Before you rush to point it out

Yes of course I’m proud that I’ve been able to do it

Yes of course I know that it could be worse

Yes of course I know that I signed up for this

Yes yes yes

Of course

There’s nothing you can say that I don’t already know

That I don’t repeat to myself a million times a day

That I don’t mutter under my breath whenever these fears creep in

That just doesn’t make me feel any better

And yet

Here I am

8 months in

I’m still alive

But that voice in my head

Just keeps talking

Keeps taunting me

Keeps haunting me

Keeps reminding me

This is your life now

The blood tests, the results page, the friendly lab techs whose names I don’t remember, the urine containers that I struggle to pee in, the anxiety

And the fear

That what if

In the end

None of it was worth it…?

An update: The good, the bad and the ugly

I’m about 7 months post Round 1 of Lemtrada treatment. At this point I can unequivocally state the following:

• I haven’t had a relapse (evidence-No worsening symptoms, no new symptoms)

• My lymphocytes have slowly been replenishing themselves (evidence-I am at 1.0 as of last month around this time)

• I haven’t had any infections or severe side effects (evidence-no emerge visits)

• I have greatly improved my ability to work (evidence-I am working a FULL work week which I haven’t been able to do in years)

• The side effects from the treatment have significantly improved (evidence- fatigue is still a problem and appetite is wonky but I no longer feel like I’m going to…you know die 😬)

• Overall I have more energy than I have had in years (evidence- some days I can actually do stuff after work, at work I can actually keep up with the youths)

• My life hasn’t returned to ‘normal’ (evidence-I’ve been advised to not get tattooed until…) 

• There is a lot of uncertainty (evidence- will I have a relapse? Will the treatment be successful? Will I get one of the ‘bad’ side effects from treatment?)

• I still fucking hate getting blood work done (evidence-I still need to lie down every month while the lab tech draws my blood 😳)


❤️ Angela

And she lived…

So as some of you may know MS has caused ongoing vision problems for me

I’ve had optic neuritis several times

Each time it has stolen a piece of my vision 

Only to return it scarred and less functional

I used to be an avid reader

‘Used to’ 

It makes me sad to even write that

I would devour books so quickly and effortlessly

I took that ability for granted

I never thought there might be a time when I wouldn’t be able to

I can still read

But it causes pain and irritation in my eyes 

So I started listening to audiobooks

But it’s different now

For some reason the books of before

Don’t hold my attention through listening 

So I listen to fluff

I listen to romance audiobooks 

With happily ever after endings

The old me would have snorted and scoffed with derision at this shit

But anyway

That’s what I listen to these days 

A few days ago I started listening to an audiobook that had tons of positive reviews 

People wrote that it was sad and beautiful and romantic and they cried

So I gave it a go

The story progressed nicely

The hero and heroine met and fell in love

The heroines sister was ill and eventually passed away

I thought to myself ‘that was pretty sad’ and was glad I’d moved past the sad part in the story 

And then

There was an incident in which the hero ended up in the hospital 

And his nurse said he’d likely have to start a round of Solumedrol 

Shit

I thought

I know what that is

It’s a steroid for inflammation

Don’t let this go there

I kept listening 

The heroine had heard of that drug before as well since her sister had battled Huntington’s disease 

The hero and heroine looked at each other and the heroine asked, with tear filled eyes if the hero was sick

The hero, with great trepidation and a heavy sigh (that only someone with a burden knows too well) states that yes he has a disease

Shit

I thought

Don’t let it be what I’m thinking 

He says he has Relapse Remitting Multiple Sclerosis

Pause

For me anyway

I don’t know what the heroine said

I don’t know what the hero said

I stopped the audiobook

I guffawed

Seriously

I fucking guffawed

I got out of bed

I turned on the lights

I got annoyed

So fucking annoyed 

Why did this guy have to get MS

MY kind of MS

What kind of fuckery is this?

Who fucking gets MS in a romance book?

I felt cheated

I passed the sad part of the book

I wanted the happy ending

I needed the happy part where everyone is happy and safe and healthy and the hero and heroine get their happily ever after

I did not want to relate to the fucking hero’s sad shit

Full stop

I got annoyed and irritated when I found out I had MS

When I learned that it was MS causing the blurred vision 

Then after learning about MS and the possible course of the disease

I felt fucking cheated

This was not supposed to go this way

I conquered anxiety

I manage my depression EVERY damn day

This was supposed to be MY time

Even though I wasn’t reading romance books then 

I’d read enough books at that time to know

That every great heroine has to overcome a battle

And I did

With great difficulty

With a lot of pain

I was ready for the happy ending

I expected it

Where was my happy ending?

I don’t mean the drivel with the love eternal and the wedding bells, 2.5 kids, house and a white picket fence

I mean the part where I get to live out the rest of my life in peaceful contentment

Feeling like a heroine 

Cause I’d slayed my beasts

And then it came to me

This is why I’m so pissed off with MS

So angry so much of the time

Because I don’t know how this story ends

I don’t know that the heroine is happy in the ending

I don’t know how she’ll live out the rest of her life

It’s like living in a perpetual cliffhanger 

I don’t know how MY story ends 

I know how I WANT it to end

But MS came and put a big huge ‘WHAT IF’ across the page 

I don’t want to worry about the what if’s 

I don’t want to lose sleep over the what if’s 

It’s too many blank pages 

Some might say that’s the same for everyone

But that’s bullshit 

We know the most people will not lose their vision

Most people won’t be wheelchair bound 

(My two biggest fears)

I want to hit play on the audiobook 

And accept that the hero does have MS

But I want to hear that the hero wins

I need to hear that the hero 

gets his happily ever after

But what if he doesn’t?

What if I don’t?

So I’ve left it on pause

To be continued

It’s a picture of time frozen in place after which the hero and his love are together and he happens to have MS

And I’ll leave it there

An epic and everlasting ‘to be continued’

Nothing bad has happened yet

And everything is a possibility

That’s my happy ending

The line begins to blur


I had a weird moment the other day

I went swimming and obviously had to take off my glasses
I couldn’t see shit

I got so frustrated

I went into the water and put on goggles

And

The world came into focus 

Crystal clear and vivid

I glided under the water 

It felt like I was dreaming 

I could see like I could before MS fucked everything up

And I know it was just the inside of a swimming pool

But

It was so fucking perfect

All bright colours

And defined lines

I put my arms out in front of me 

I watched them 

Thinking how something so insignificant like my fucking outstretched arms

Could be so beautiful

I came out of the water several times

And dove under again

Testing the waters

Literally

Every time I went under

The world slipped back into focus

I’m sure there’s some scientific reasoning behind this

But I don’t really care 

Because for those brief moments

I didn’t struggle to see what was around me

I wasn’t being reminded of my disability

It was flawless

I was flawless

And then I got out of the water

And reality crashed like waves

The world was darker

Unfocused 

Everything was dimmed

Fucking irony