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

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…

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

Somewhat Damaged

Feels like all I ever say is I’m sorry

I should just write them out like lines I used to do in school

And then tape the words over my mouth

Or throw them in the trash

For all the good they’ve ever done for me

I’m exhausted of the emails, the appointments and the alarms I can’t get out of bed for

I’m tired of trying to pretend

To fake it till I make it

To paste a smile on my face

It’s not for me anyway

I’ve never been so skilled at make believe that i could dupe myself

It’s for your comfort

And his

And hers

And it makes me feel worse

I don’t want to care what anyone thinks

I don’t want to see the judgemental looks

I don’t want to hear the accusatory tones or the false sympathies

Yet It’s all my brain can process

Everything has become so fake it smells like my grandmothers plastic couches

Or so bleak it’s like I’m trapped in a dark closet with no light bulb and no way out

I want to shut off my brain

My somewhat damaged brain

This brain of mine

What good has it ever done me?

Filled with anxious thoughts that I couldn’t get rid of

Then so much sadness it was drowning in a sea of it

Then lesions that *poof just appeared one day

And I’m supposed to find a silver lining in this?

Since I’m so skilled at apologizing…

Here goes nothing:

I’m sorry that my lining must be covered by so much shit that I can’t fucking see it

Maybe I misplaced it along the way

For what it’s worth I’m sorry that I lost it

I’m sorry that I lost that silver fucking lining that would make all of this bearable

I’m sorry that I can’t find the silver lining that would give all of this shit a deeper meaning

I’m sorry that I can see everyone else’s silver lining

I’m sorry that maybe some people are just born without the ability to see their silver lining

And I’m so fucking sorry that mine seems to be missing

Or maybe it’s somewhat damaged

And wouldn’t that be a perfect kind of irony?

(An angry playlist to go with an angry mood)

I want to dance in the rain

I don’t want to be that person above that sits impatiently waiting for the huge storm to pass

With tired eyes and a listless body

I don’t want to be the person that misses out on the feelings of being alive you only get while dancing in the rain

With a heavy heart and a restless soul

I don’t want to be the person that sits and sits wondering when the storm will end

I do want to be the person that makes the best of what the storm is offering

I do want to be the person that can revel in magic of the strongest storms

I do want to be the person that can revel in the beauty of the sun coming out after a dark storm

But what do you do when your body and your mind and your soul are all operating at different levels of abilities?

Your body wants to sleep

Your mind wants to give up

And your soul vacillates between wanting to run and wanting to steal someone else’s happiness

Some days my body can’t go on

And I have to call in sick from life

And I have to sleep

And I have to hope that rest will be what my body is needing

Some days my mind’s suffering is so strong

And I need to escape from life

And I need to sleep

And I need to hope that I either won’t wake up or that I’ll wake up whole again? For the first time?

My favourite are the days when my soul is screaming the loudest that it can’t be ignored and I have no choice in the matter

And I just live

And I just laugh

And I just love

So fully

So heartily

So fucking strongly

That I hope it will be enough to keep me going

On the days when my body and my mind are all I can listen to

And I can’t remember what the rain drops felt like cooling my skin as I danced and danced under the magical stormy sky

I want to box it up

With tape and bubble wrap

And beautiful hopefulness

I can replace my broken heart with it

I can replace my damaged mind with it

And I can live the way my soul wants me to

Never simply waiting for the storm to pass

Always dancing to the chaos of the rain drops

The only way me soul expects me to…