‘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

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‘Oh Angela It’s A Long Time Coming.’ The Lumineers

It is both heartwarming and difficult to look at these pictures of me.

I can see innocence and hope and so much zest for life in her expressive eyes. When I look in my eyes now, 35 plus years later, I see sadness that changed who I was to become.

I don’t know if that funny little girl with the big doe eyes is still around…but to her..I’m sorry…I wish I had done better

The Only Way Out Is Through

It’s been something like two and a half weeks since I lost my mind
Countless days and nights that I haven’t felt like myself
That my skin hasn’t felt like my own
Two and a half weeks since I went to two different emergency rooms
Two and a half weeks since I spent the night at a crisis centre
Two and a half weeks since I first lost my appetite
Two and a half weeks since I first started having irrational and obsessive thoughts on top of multiple panic attacks per day
Two and a half weeks since I became scared to be alone
Scared in my own home
Scared of my own mind
It’s been a week and a day since I came to stay with my parents
It’s been a week and a day and I’ve only been comfortable being left alone once for a short period
It’s been a week and a half since I told my neuro psychiatrist what I was experiencing
It’s been a week and a half since I went back to my old full dose of Paxil
It’s been a week and a half of 3-4 Ativan per day
It’s been a week and a half of nausea, grogginess, headaches, crying fits and having my appetite return
It’s been a week and a day since I haven’t went to bed in my own home
Where I haven’t seen Joey either right before bed or as soon as I wake in the morning
A week and a day since I last napped with my dogs
4 days until I call my neuro psychiatrist to let him know how I’m doing
5 days until I start paying for Cognitive Behavioural Therapy
Unknown days until I return home
Unknown days until I don’t wake up afraid of a day filled with panic attacks
Unknown days until I don’t fall asleep fearing another day of panic attacks
Zero days that I haven’t wished for a different life
Zero days that I felt like I had the strength, courage and determination to get through this
Today though…is a special day
It’s the day where I wrote
Today is the day that I got my voice back


‘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

‘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.

‘When The Soul Suffers Too Much, It Develops A Taste For Misfortune.’ -Albert Camus

On a shitty day, I’ll gamble with myself

‘ If even one good thing happens to me today, I will be okay.’

At first glance it seems the odds are stacked in my favour

Only I’m not a very good gambler

And I find myself on the losing end of that bet more often than I’d care to admit

One

Good

Thing

It doesn’t seem like much

Nor does it seem like something that would be hard to come by

But when you’ve stopped working

Your world becomes frighteningly small

Leaving you with less possibilities for something

And there’s only so many times you can count your dogs something good that happened

Without starting to feel like you’re lying to yourself

Maybe it’s the combination of illnesses that I carry

That make it harder and harder to be on the winning side of that bet

Maybe it’s luck

I don’t know

I think I’m one of those people that can lament that if it weren’t for bad luck, they’d have none at all

So I like calling it a bet or a gamble

Because when you’re calling it hope

And you lose….

It’s just so much more disheartening

‘I Regret Those Times When I’ve Chosen The Dark Side.’ -Jessica Lange

I always thought I was a ‘no regrets’ kind of person

Did the things I wanted to

Things I loved

With minimal regrets

I told myself that’s why I got tattoos

Why sometimes I could be impulsive

It now seems so childish to think you could live an entire life without regrets

It’s an impossibility

Sure maybe you took that trip you wanted

Or you told that person you loved them

But we each carry some type of regret over something we wish we could have done

Or just done differently

Sometimes it doesn’t take ones deathbed to look back over your life

Sometimes all it takes is a really restless sleepless night

And suddenly regrets pop up faster than you can search for the sleeping pills

So you’re stuck

Staring into space and reviewing 37 years of a life you’d thought you had lived regret-free

I wish I could wax poetic like Sinatra did

About admitting to having had regrets and yet having had too few to even mention

But it’s nearing 4 am and I fear I won’t be able to get some rest until I lay them out there

So here are some (in no particular order)

Regrets:

◦ Not getting my degree when I was younger

◦ Wasting time with forgettable people

◦ Not spending enough time with memorable people

◦ Not reading a book in every spare minute I had

◦ Giving up my job (this one haunts me)

◦ Selling a home that I felt instantly connected to

◦ Not telling off a former boss (or two)

◦ Some coworkers too

◦ Not speaking my mind when I knew I should have

◦ Declining certain invitations from the aforementioned memorable people

◦ Allowing some people to make me feel less than

◦ Every time I felt embarrassed for not knowing something

◦ Not showing or telling some people how much I care(d)

◦ All the time I spent wishing instead of doing

◦ Not relishing the enjoyment of watching a movie or tv show

◦ Not relishing the enjoyment of reading a book

◦ Not relishing every single peaceful moment

There are more

Of course

I’m sure I’ll add new ones to this list as well

Although I’d much rather say from this moment on, there would be none

But that would be a lie

And I’m too tired to pretend with myself

——-

I did fall asleep about two hours after writing this but it didn’t give me the relief I was craving

Instead I laid in bed crying about my job

Feeling sorry for myself

Feeling sorry for Joey

Feeling sorry that there are kids out there that I just know I can help

But that I won’t be able to

And that last one

Just fucking guts me

My tears now feel hot and painful as they roll down my face

My chest and stomach hurt

And I’m overcome with feelings of guilt, sorrow and that same fucking regrets

So it seems that exorcising your regrets isn’t the same as having none in the first place

Who knew? 😒