One May Have Good Eyes Yet See Nothing

I started to write an update as it’s been two weeks since my last infusion day…

But everything seemed so trivial when I saw it typed in front of me

There’s so much that I want to say and yet it doesn’t feel like it would amount to much

So I’ll make this brief and say the only thing I’ve really been wanting to say:

I’ve been watching TV like all day every day

The bingeing kind of TV watching

The kind I’ve been unable to do in so long

And I was scared to say this aloud or type it out

But fuck it it’s my blog after all

My eyes don’t hurt

I’ll say it again for the people at the back

MY FUCKING EYES DON’T HURT!

I can’t remember a time when they didn’t hurt

It’s been that long

How crazy is it that I can barely remember the before MS version of me

I’m not foolish enough to think this is permanent

But for now I’ll relish in this moment

Temporary and short lived or not

And if it all comes back in the blink of my eye…

Write. Write until it stops hurting.’

-Anais Nin

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I’m like the Tonya Harding of the non figure skating world

More specifically

I am the Tonya Harding of the sick persons world

Like Tonya, I’m not the easiest to like

Like Tonya, I don’t evoke feelings of sympathy

Like Tonya, I’ve had to work at everything I’ve ever wanted

Unlike Tonya, I know the war is with myself

No one else ever should a chance

I know that there is no outside force that can be changed which will miraculously make my own life any easier

Nor will it make me the perfect poster child for a winning MS campaign

Or the face of the next Bell Let’s Talk day

I’ve accepted that things will likely always be a little harder for me

It’s my cross to bear

I’ve learned not everyone has one

And yes they are indeed lucky for that

Would I change it if I could?

Without hesitation

Do I think that there is anything within my control that would make said things easier for me?

Not a chance

The cross I have to bear

It’s a big one

It’s heavy and solid all the way through

And I drop it often

I can’t ever lose it though

Because I know it’s mine for this lifetime

So I pick it back up

And march on with it

It never feels lighter or easier

But I get more comfortable with it

I still stumble, and I struggle

But I have learned something

That cross will always be mine

And so I bear that damn cross

That has my name so deeply carved in it

That it could only ever be mine

No doubt or question

Sometimes I think I was born with that fucking cross

It was always mine

It claimed me

Before I had a chance to even breathe

Hi my name is Angela and it’s been one week since my last infusion…

It’s been up and down

Steroids really fuck with my entire system

Most of the physical side effects have dissipated

Left over is irritability

More so than usual that is

I don’t know how last time around I spent an entire month in isolation

I’m seriously going mad inside

I’ve watched shows, played around with my hair, cleaned, planted some herbs on my terrace and slept

And thought

A lot

I’ve been thinking about what’s next with work, how the kids are doing, if this treatment will work, the upcoming Paxil withdrawal, how they really do get the caramel in the caramilk bar

And the list goes on and on and on

I’m not gonna lie

The Paxil thing has been at the forefront

I have been totally obsessing over it

I’m terrified

But that’s another blog entry altogether

Right now

I’m trying to make it to two weeks post treatment

And then I will rejoin the world

If it’ll still have me of course

Which has always been debatable

At best

Like me

Temperamental

At best

Why bother trying to write something when someone else has already written it so much more succinctly than I could ever imagine.

I don’t have any words other than this article is everything I’ve thought myself, too many times to count…

https://themighty.com/2018/04/chronic-illness-struggles/?utm_source=engagement_bar&utm_campaign=post_feed.story_card_full.mobile_fixed_engagement_bar&utm_medium=link

Nobody told me

Nobody told me ten years ago

In the middle of a crisis of my mind

That the miracle pill I was being prescribed

That the pill which was so hard getting used to

Would be worse to get off of

Would be compared to heroin to withdraw from

I’m on 40 mg of Paxil and have pretty much been on that dosage for the last ten years

I’m pretty sure that for the last 5plus years that my continuing to take it, does little else but keep me from getting sick

A year ago a psychiatrist recommended I wean off of it and try something else

I panicked

I never went back

I know it’s the right thing to do of course

I know my anxiety won out

Despite that I’ve been able to get a really firm handle on managing my anxiety disorder

Certain situations make the anxious thoughts and sensations come back with a vengeance

The flu

Being intoxicated

Certain medications and side effects

And the thought of weaning off Paxil

Not because I’m a firm believer in the drug

But because I am so fucking scared of losing myself again

It was so awful once upon a time to be afraid of my mind

To be afraid to be alone with my thoughts

To not trust myself

And yeah the Paxil isn’t improving my mood

But I feel like me

Granted a heavier sweatier me

But that’s a small price to pay for peace of mind

Literally

But I went back to the aforementioned doctor yesterday

And explained why he never saw me again and my fear of the withdrawal process

When voicing these concerns, he recommended contacting a Compounding pharmacy

The compounding pharmacy can create capsules that would allow me to reduce Paxil in smaller increments

Say for example by the rule of 10% drop, so 4 mg at a time

Maybe for a week or two

The process will take longer but the goal is to minimize the negative side effects associated with Paxil withdrawal

I contacted some compounding pharmacies and they can do that

For a cost of course

But peace of mind you know…

I am supposed to call the doctor and let him know what I have found and decided

But instead I obsessed and allowed my anxious thoughts to run wild

With all the what if’s and worse case scenarios

So here I am now 24 hours after seeing the doctor

I’ve had to take an addition Ativan to blanket my anxiety

I’ve made no concrete decision

And as long as I continue to avoid the decision

My anxiety will remain at bay

And I know that’s not an answer

Just another avoidance

And I’ll tell myself it’s for the best

And my anxiety-addled brain will believe me

Until…

‘But black roses and Hail Mary’s can’t bring back what’s taken from me’

It’s with a heavy heart that I write this blog tonight

My doctor has assessed me and has determined that I’m not medically fit to work right now

So, I’m taking a leave

I’m not sure for how long

Starting now

Part of me thinks I can never return to a place that made me doubt myself so many times

Questioning my value

Questioning my worth

I don’t care what anyone says

It was personal

It still is

And I can’t pretend that doesn’t hurt

Part of me is terrified at the prospect of starting over

Again

I’ve never had to look for a job carrying the weight of an MS diagnosis on my back

I don’t know how I feel carrying that burden into a new environment

I’m scared to go from one unsupportive employer to another

Let’s be real shall we?

Who wants to hire someone who is likely to take a lot of sick days?

Even if said person is fucking stellar…

On the days they are there

From a production point of view

It just doesn’t make sense

In their terms

I will always be a liability

And not an asset

So where do I go?

Even with certification I don’t have enough letters behind my name to start up a private practice

I’ve never really learned to do anything else

But you know talk to youth

What will I do if I can’t do that?

I’m not so egocentric as to think there won’t be others who are more skilled at engaging youth than I

And I will be replaced

As if I was never even there

Maybe just a cautionary tale for new staff

I’ll just be another adult who abandoned the kids I currently work with

All that work building trust

Gone just like me

They’ll look back on their time with me with bitterness and a reminder to never let someone get too close

And I’ll carry that guilt with me

And let me tell you kid

I fucking get it

I trusted too

I placed faith in my employer

And I’ll look back on this time with bitterness and a reminder to never let anyone see your weaknesses

After all this and I can still relate to those kids so damn much

For them, I’m sorry

I don’t know what’s next

And that is probably why my heart is beating out of my chest and my stomach is warring against itself

What will I do while I’m home?

Will I get worse with nothing to occupy my needy brain?

Will I sit around in my pjs and anxiously pick at the thoughts reverberating in my brain?

It’s okay

And I think to myself over and over again,

Not every story gets a happy ending

Not even when I’m writing it

And especially not when it’s my story

And it’s okay

It’s gonna be okay…

Worlds Worst Employee

Chronic absenteeism

Those words keep repeating in my head

Sick days

Can’t get out of bed days

Anxious days

On and on

I can’t even use Multiple Sclerosis as an excuse

It started way before that

Somewhere in between my first real job in the industry and getting married

There were so many bad days

I wish I could say I know why it all happened

I didn’t know then and I don’t know now

It’s embarrassing when a supervisor calls you into their office to talk about your frequent absences and not the quality of your work

I can’t remember what I disclosed then

I was naive and thought people in positions of power cared

Especially in a field such as mine

But chronic absenteeism isn’t forgivable even in the best circumstances

I found that out quickly

I had a boss once who understood me

I can’t say enough about her

She didn’t judge me or make me feel less than

But then she was replaced

And when she moved on, she left a note for the next person in charge advising them to overlook the absences because in her words I was ‘worth it’

It got worse after I was diagnosed with MS

The chronic absenteeism, that is

I had a few supervisors that tried to understand

Or maybe they just overlooked it because they too thought I was ‘worth it’

That’s my wish

But I don’t know and can’t speculate on the why

There were some uncomfortable conversations where I hung my head with guilt and embarrassment weeping from my pores and tried to explain my life

In words that didn’t sound like excuses

Even though I’m sure that’s how they sounded

I know they did

Because my own ears heard it that way as well

Here I am now

10 years post finding out struggling with mental illness isn’t a valid reason for missing work

5 years post learning that adding MS to that equation doesn’t add up to stellar employee record

Decades after my father stopped working for similar reasons

Now at 36 years old I’ve built up a track record that includes words like ‘chronic absenteeism’ coupled with sentences like ‘when she’s there, man she’s good’

Where does that leave me?

With an ultimatum of having my doctor evaluate me and my frequent absences and ask for a modified work schedule which would likely lead to my relocation to another program (if possible)

Or quitting/going on long term disability like my father did so many years before me

Tackling the latter; quitting would leave me in a precarious financial situation

Going on long term disability would mean I’m off of work at 36 years old with a brain that doesn’t do well left to its own devices

Trust me, I’ve seen what it did to my father

The alternative is going to my doctor with forms and chronic absenteeism on my tongue

And that would leave me in a state of limbo

Where my fate is left in the hands of an employer that I have lost all faith in

For them to decide if they can accommodate me

Really for them to decide if I’m worth accommodating

Or to find another program to stick me in

Like a dirty little secret

Where the powers that be will dump me onto the unsuspecting supervisor

I wonder what their track record included for them to have gotten stuck with the likes of me;

The Worlds Worst Employee