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

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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

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