Fourth try’s a charm.
Thank you to my homegirl Terri for being a blood retrieval Goddess 🙌🏼🙌🏼
Fourth try’s a charm.
Thank you to my homegirl Terri for being a blood retrieval Goddess 🙌🏼🙌🏼
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
No blood came out
She tried a few times to get it flowing
She tried a different vein on the same hand
I pumped my hand manically
She got the vein
I asked her to try my other hand
I was pretty shaky, sweaty and anxious at this point
She inserted the needle
No fucking blood
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
With her empty vials
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
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
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
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
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’
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.
I could settle for that
That feels more like a year
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…
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.
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.
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.
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.
I watched Birdbox the other night
It’s a post apocalyptic film that is more unsettling than scary
The characters apparently ‘see’ something that is so troubling, distressing or terrifying that it makes them kill themselves instantaneously
The only way to prevent this
Is to be blindfolded effectively eliminating the chance to ‘see’ anything and that in and of itself is probably the scariest aspect of the film
The characters flee to a safe place which happens to be a home for the blind
Although in the book
This sanctuary is comprised of people who have voluntarily blinded themselves
Which I must say
Is a far creepier ending than the somewhat optimistic one the movie left us with
This movie left me with a lot of thoughts
Two of my fears just happen to be the end of the world and going blind
The former because of a weird experience I had with magic mushrooms when I was something like 16 years old
And the latter
Well that’s pretty self explanatory
What the movie gets so right though
Is capturing the fear of the unknown
Seeing the monsters always takes out some of the scare factor
Leaving them hidden
Allows us, as the watcher to assume the worst
Creating our own separate and distinct versions of the scariest creatures possible
And then this got me thinking about Multiple Sclerosis
Because these days, what doesn’t?
That very reason
The unknown is why people with MS tend to have high rates of anxiety and depression
When we are left to conjure up visions of our futures
We think of worst case scenarios
Each of us coming up with what would be the most horrific outcomes possible
Based on our individualized dreams, aspirations, loves, passions and etc
So how do we move forward?
When there is no way to accurately predict the future
Or even an adequate idea of what you want your future to look like
Even with scientific facts and doctors and MRIs
Several years ago, after a particularly bad period in my life filled with panic attacks
I attended a cognitive behavioural therapy group for panic and anxiety sufferers
One of the techniques they taught us to cope with our panic/anxiety
Was the use of exposures
Another was challenging negative self talk
At the time, I was struggling with my panic attacks occurring when I felt trapped
So I did my exposures in locked closets and on long subway rides through tunnels
I challenged all of the ‘I am going crazy’ and ‘I am a failure’ negative self talk
And replaced it with things like ‘I’m experiencing a panic attack, not going crazy’ and ‘having a panic attack does NOT make me a failure.’
The 14 week program was probably the biggest reason why my anxiety for the next several years was manageable
Until Multiple Sclerosis came along with its lesions and inflamed optic nerves and steroids
And literally upended my entire world
But what if I could use similar techniques to cope with MS?
Like my anxiety, it’s not going away and is a part of who I am
What if I imagined the worst case scenarios of MS? Like really felt and experienced what it would be like
What if I challenged all of the painful thoughts that float in my head so many more times a day than I care to count?
Would it make this more bearable?
What if I accepted the unknown future and made a promise to myself that I could still bitch and hate and moan about it but ultimately roll with it and move on?
What if I accepted that I can’t finish my Bachelor of Social Work?
What if I accepted that I probably won’t be able to work full time?
What if I accepted that I will likely continue to struggle with my vision and the pain it brings?
What if I accepted that I will never have the life that I thought I would? That I hoped I would?
Would I then be able to finally end the chapter on all of that?
That chapter which has been left on a permanent ‘to be continued’
Which feels more like a permanent hostage situation
So what if I could erase that last line
And start a new fucking book
With all of my ‘defects’
With all of my broken pieces
With all of my changed dreams
Could I burn that old book filled with my past and all of my hopes for a future that isn’t really mine anymore?
Could I do it and just start over?
Not knowing what the ending will look like
Not knowing what will fill the table of contents
Knowing that a piece of me will burn with it
I have a tattoo I got years ago which reads ‘Tabula Rasa’ which translates into ‘Blank Slate’
I got that because I liked the idea of being able to start over
At any given time in our lives
To stop the story
And start something new
I think it’s been somewhat of a motto for me
When I didn’t like school or work
I called it
And started anew
So maybe that’s where I’ll start this new year with
My tabula rasa
My slightly broken
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
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