‘Feel the hollowness inside of your heart And it’s all, right where it belongs.’ Nine Inch Nails

I wrote this :

http://FUCKMS.CA/2018/03/21/A-TYPICAL-SICK-DAY-IN-THE-LIFE-OF-A-YOUTH-WORKER/

A year ago today.

My heart hurts

Looking around at my life

I still can’t quite accept that this is actually mine

Then I get mad at myself

Because that’s probably why I can’t move forward

I miss who I could have been

I miss who I should have been

I miss who I almost was…

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‘The Jealous Are Troublesome To Others, But Torment To Themselves.’ William Penn

When your world feels small and your life seems shitty, and you see the people around you…people you love or like a whole lot…living their lives, happy and maybe not perfect but pretty damn good

How do you cope with that twitch of jealousy in your heart?

The one you don’t want to experience

And the one that it pains you to admit to

How do you feel happy for them…

And still long for your own

Without that green-eyed monster taking up permanent residence in your heart?

-Asking for a friend 😳

‘Everybody Is A Book Of Blood; Wherever We’re Opened, We’re Red.’ Clive Barker

Today sucked

Hard

I arranged to have one of the Bayshore nurses come to my parents house to do my monthly bloodwork

Since I skipped last month

I was nervous before the day started

But I went with it

The nurse got here

I did the same old pee in the plastic cup song and dance

And then sat in a recliner to get it over with

I told her I usually have it taken from my hand

And that I have anxiety related to it

She was kind and all that

I didn’t have my rubber ball to pump to get the vein ready and blood flowing

But I tried other methods

She got the vein on the first try

I breathed a sigh of a relief

After the initial painful puncture

And then…

No blood

No blood came out

She tried a few times to get it flowing

Nada

She tried a different vein on the same hand

I pumped my hand manically

She got the vein

And still

No blood

I asked her to try my other hand

I was pretty shaky, sweaty and anxious at this point

She inserted the needle

And

No fucking blood

She said

I literally have the needle in your vein and nothing is coming out

We gave up

She recommended I try to go to my regular lab and see my usual homegirl

But of course

Because of my panic and near agoraphobia

I had been trying to avoid that

She left

With her empty vials

Apologies

Used needles

And unfulfilled lab requisition

I was left with my urine sample sitting on my mother’s coffee table in her living room

There wasn’t any point in sending it in without the blood

Three track marks and I’m sure ugly bruises to follow

I pulled my knees up and just started sobbing

I broke my no-crying-for-three-days record

Feeling sorry for myself

Everything is always so damn hard

Nothing seems to come easy

And yet

After all of that

I didn’t have a panic attack

Even pre crisis

A day like today would have likely made me have a panic attack

But today

Through the punctures, the pain, the discomfort, the crumbled hope and the anxiety

I didn’t have a panic attack

That’s my silver lining on this shit-tastic day

‘That Which Does Not Kill Us, Makes Us Stronger.’ Nietzsche

Mornings and late late nights are my worst

So far, I’ve made it through 7 mornings and 6 late late nights

Though it felt more like months of both

My body is tired

From ingesting little more than diabetic meal replacement drinks

And the occasional PB and J sandwich

I never thought it could get so bad

Correction

I never thought it would get this bad, again

Although it feels new to me

In many ways I’ve done this before

From calling crisis centres to emerge visits and drinking meal replacers and med changes

I guess I should say

I hoped it would never get this bad again

I know the old adage of ‘that which does not kill us, makes us stronger’

But I think I’d be fine not being tested for the millionth time on my strength

I think I’d prefer something like

‘You’ve been through the worst, it’s all sunshine and meadows ahead’

Shit

I’d even settle for something like

‘Way to go Angela!

It’s all overcast and fields of manure with the occasional sun shower ahead.

Yeah

I could settle for that

‘A person with panic disorder may experience symptoms such as severe feelings of terror, rapid breathing, and rapid heart rate. People with panic disorder may experience these attacks unexpectedly and for no apparent reason.’

One week

That feels more like a year

One week

That will go down as the worst in my life

I’ve lost count of how many nights I’ve woken Joey during the night in a sheer panic

Two emergency rooms

Two emerge doctors whose kindness I won’t soon forget

A private inpatient facility

A crisis line

Two triage nurses

Anyone who would listen

Even the ones that didn’t

Two psychiatric nurses

One psychiatrist who cared more about ‘stepping on the toes’ of my neuro psychiatrists than helping me through a crisis

One night at a crisis centre

One night where I never thought I could ever end up

One staff member who was my lifeline

One 37 year old who needed her mom to get through the night

One nine hour wait in an emergency waiting room

One road trip to Collingwood

Another half hour wait in an emergency waiting room

Countless nurses and doctors who looked right through me

As long as I didn’t kill myself

No skin off their backs

One prescription for Diazepam to get me through another scary night

Several messages and emails left for my neuro psychiatrist and to my family doctor and to anyone else I could think of

Two more days until I get to see my neuro psychiatrist

Thousands of hugs and kisses and words of encouragement from Joey and my mom

Countless messages of support from my friends, family and Facebook peers

One persevering warrior

Who is trying her absolute fucking best

To not give up

One day and night

Where the first and last thoughts aren’t about panic attacks

Would be nice too…

‘There Are Moments That Mark Your Life. Moments When You Realize Nothing Will Ever Be The Same. And Time Is Divided Into Two Parts – Before This and After This.’ Nicholas Kazan (Fallen)

I had an a-ha moment today in my support group. We were on the first step which is:
1. We admitted to ourselves that we are powerless over our disease. That our lives had become unmanageable.
I got to go last…which meant I got to listen to 3 MS veterans. All having been diagnosed more than 15 years ago.
One spoke of feeling comfortable in being alone on Xmas day.
Someone else spoke of being okay with their sometimes self-imposed isolation. Another spoke of being aware of their limitations, without being self-deprecating.
I sat back and listened.
One in a wheelchair.
One in a scooter.
One with cognitive symptoms.
And I felt envious.
Of them.
Me,with my mostly mobile body.
Me, with my mostly cognitive functioning brain.
I felt jealous of each of them.
I felt jealous of the comfort and grace each of them had come to possess upon accepting their illness.
I sat there and reflected over the last 6 years since diagnosis.
The ups and so so many downs.
The relapses.
The symptoms.
The steroids.
Treatments.
Injections.
Sleepless nights.
Crying fits.
Raging fits.
Anxiety.
So much fucking anxiety.
All of it, having led me to this moment.
Waiting for my turn to talk in a 12 step support group.
Their eyes looked to me.
My turn.
I looked around the table.
Less than a year ago, they were nothing more than three strangers. People I would have passed on the street, without a second glance.
Now we share this inexplicable bond.
This illness we all have.
Referred to often as the ‘snowflake’ disease, since symptoms vary so much from person to person.
These three people who now know more about my feelings and thoughts than most of the people in my more immediate circle. These strangers not so different from this lifelong outsider, after all.
I told them I thought that I had accepted having MS.
6 years ago. I heard the words coming out of my Doctor’s mouth and thought to myself ‘okay….so now I have MS.’
I thought that was enough.
I thought that meant I had accepted it.
But it wasn’t until that very minute that I realized, I would never be able to accept MS, until I had also accepted the negative impact its had on my life.
That meant accepting the change in my job status.
The permanent damage to my eyes.
The toll all of it has taken on my already fragile mental state.
Taking all of that in…and still being able to say that while I won’t succumb to it, I have come to terms with having MS in my life. That I’m OKAY with it.
I’m not there…
Not even close.
But I found hope in looking around me.
Which for someone as chronically hopeless as myself, is a fucking lifeline.