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 like spooky things like Halloween in Salem
And even though I don’t really consider myself a ‘believer’, I like going to psychics and mediums
While in Salem for Halloween and on a boat cruise, I had a free reading done
I sat down and after shaking hands and making introductions
He motioned to a pin on my jacket of a broken heart stitched together
He said it represented me well
I’d been broken hearted
Not by love in the traditional sense
But by the world
I laughed a little nervously and my curiosity was piqued
It was a short reading and I can’t stop thinking about something he said during it
He told me that I always felt like I didn’t fit in
He said that maybe that was okay though
Because some people aren’t meant to fit in
Some people are meant to make a difference
He said that in my work I was trying to make a difference for people
That I’m a healer and a powerful empath
I can’t stop tracing those words in my mind
I continue to think about it and where that leaves me
Which is apparently on long term disability (after finally being accepted a month ago)
In that time period, I feel like I should be doing something
Only I don’t know what
This isn’t new though
I’ve never been someone who had a clear path or knew what they wanted to do from a young age
I went to several different schools and tried on different hats
The only one that fit reasonably well was the last one I wore
Working with youth
I knew even though
That it wasn’t the perfect fit
The school restrictions, the politics, the employer
But it was so close
And then in the blink of an eye
Like things in my life so often do
It didn’t feel right anymore
My direction was blurred
Just like my vision
I only knew I couldn’t go on like that
And it had nothing to do with the youth
It had everything to do with how others made me feel like I wasn’t doing good enough
My pride was so deeply wounded
That I can feel it
Like rubbing salt on fresh wounds
Just thinking about my job, those kids, that work, those people, that job
And I feel it all over again
Every single burn
All the pain
Pride is funny like that
It’s with you during some of your happiest moments and accomplishments
It can carry you through some of the toughest times
And then bury you just as easily
I was thinking how these last few weeks (months?) have consisted of me trying not to feel sorry for myself
Yet I have been failing terribly at that
Then I got a call from a former client
Who had been out of touch for a long while and had me very worried for his well-being and safety
He’s doing great and is being taken care of for the first time in a long while
Which he deserves
He sounded so…healthy
You’re probably thinking ‘how can she tell that via phone?’
After spending inordinate amounts of time with my clients
I know them like the backs of my hands
I know their painful stories as much as I can recollect my own
I cherish their achievements probably more than I do my own
And I can tell when they’ve changed
So seldom do we hear about change for the better
But this is one of those stories
Gone was that drugged-out-to-escape-reality voice
Absent was that voice that carried so much self deprecation and sadness
I heard notes of pride, happiness and the thrill of looking forward to a promising future
All the things we hope that s young person can feel
I hung up with him, feeling lighter than I have in a long while
It got me to thinking why these last few months, out of all my 36 years, have been so difficult
So full of me trying and failing to not feel sorry for myself
Full of heartache and sadness
I stumbled into realizing that I feel lost
Feeling lost looks a lot like not knowing what your place is in the world, in your family, in your career and etc
The opposite of lost is of course ‘found’
Which is defined as:
‘to discover, especially where a thing or person is, either unexpectedly or by searching’
So that brings me to this…
Do you believe we all have a purpose?
And what is purpose anyway?
It is defined as:
‘the reason for which something is done or created or for which something exists.’
So my question really is, what are the reasons each of us are here?
I don’t think of this in terms of fantastic elements like destiny or fate
More so as each of us has the power within ourselves to reach our full potential
Which in turn then meets a ‘need’
This therein becomes our purpose
However, we often fall short of reaching our full potential
Which could be a result of a myriad of reasons (none of which are pertinent right now)
Over the last several months I have learned that I am a person who needs to have a purpose
In order to feel happy
It’s just the way it is
I can’t exist in life in any less of a way
Maybe it would make my life easier if I could
In fact, I’m sure of it
But nobody ever said it would be easy, right?
I’m pretty sure that me reaching my full potential has to do with helping others
Through sharing my experiences
The method isn’t important at this moment
I guess what is important right now
Is that I need to figure out what will allow me to feel like I’m fulfilling my purpose in life
While accepting that I do obviously have some limitations
Because at the end of the day
I just need to feel like all of this
All of the pain, sadness, difficulties
All of it
Wasn’t for nothing
Struggling to get through today
Hour by hour
Minute by minute
Each second more excruciating than the last
This is the part in the movie where the poor guy reaches for his drug of choice
Where the sad woman guzzles her beloved bottle
It’s the climax in a novel
Where emotions soar to dizzying heights
Where nothing can possibly survive at such intensity
Like a car reaching peak speed
Like an addict reaching the height of their high
The moment is suspended in time
When the audience knows a turning point is coming
Watching for the pivotal scene in which the hero sheds his old skin
Where the heroine finally emerges
That’s what happens in movies and books
In real time nothing is ever quite so profound
The moment goes on and on
Stretching uncomfortably long
The hero remains sheathed in weary skin
The heroine hides in her shadows
There’s no audience waiting with bated breath
Rooting for the breakthrough moment
There’s only a woman looking at herself through a mirror
Begging for a glimpse of the heroine to change the narrative of this story
From another unhappy ending
To one in which she finally gains her superpowers
I feel like I should apologize for being MIA lately
But I’m not really sorry
Because it’s for a good reason
It’s for me
Last Wednesday I dropped my Paxil dosage from 40mg to 30mg
I won’t pretend I was totally cool with it
I had a lot of reservations
But I also really wanted to do it
There were some shitty days obviously
Two days when my anxiety spiked to an uncomfortable level and I needed to take more Ativan
Several days where I had dizzy spells that came and went
But I survived
I can tell the following things helped:
Writing affirmations daily
Trying to stay busy
Doing a lot of introspection over the root of my anxiety
Now today I went down to 20mg
Last nite I was really starting to psych myself out of doing this
I kept thinking ‘woah 20 is a big drop from 40’
Then J. reminded me that I was going from 40mg to 20mg
I’ve been on 30mg and am stable there
Now I’m dropping 10mg again
Which I successfully did last week
I needed to hear that
It helped ease my fear
I made him write it out so I could print it
I’ve already reread it a few times
Along with some other affirmations
I need to keep reminding myself that I’ve already dropped 10mg and while unpleasant
I survived it
I’m still safe
I’m still here
And most of all
If I did it once
I CAN most certainly do it again
Changing the narrative helps
Taking the unknown and making it something familiar
Removes the fear
For anyone else out there struggling with anxiety
If I’ve got this
You’ve got this
Hard and uncomfortable as it is
We have what makes people into warriors
I’m going to remember all of the difficult things I’ve been through in my life
I am a fighter
Think of everything you’ve survived
I hope you keep fighting
Because I will too
That’s what warriors do
After much deliberation
And talking with my doctor and psychiatrist
I’ve decided to try getting off the Paxil again
Although the first time didn’t go so well
I both want and need to do this
I’ve made a list of reasons why I need to do it
I won’t bore you with the details
I’m gonna try again
I’ll be tapering by 10mg a week
With the possibility of taking up to 4-5 Ativan a day if necessary
While part of me thinks this would be easy if I take all the Ativan
I know that it’ll be one more thing to wean myself from
So for now
They will stay be on my side
There if I need them
I’m trying a few other things
Like trying to be active and busier with other things
Physically and mentally
I’m also trying to go into this with a different mindset
I’m trying to remind myself this time around that I’ve faced many many challenges in my life
And I’ve survived
I hope one day this will be another thing I can add to my list of things that I survived
Wish me luck 🤞
The compounding pharmacy has made the Paxil capsules for me
I picked them up yesterday
I will be decreasing by 4mg every two weeks
My dose was 40mg
Last night I felt really anxious
I keep thinking about how shitty I felt going on Paxil
I keep thinking about not being in control
I keep thinking about panic attacks
I’m trying to think about the benefits
Maybe I can lose the weight that Paxil helped me gain
Maybe I can stop sweating in the middle of an emergency cold alert day
And yet somehow
Those benefits just don’t stick in my brain
My brain that has been sponsored by Paxil for over 10 years
It’s not that I’m connected to Paxil
It’s not that I think Paxil has helped me
It’s solely the fear that is controlling me right now
The same fear that always controls me
That no amount of therapy or meds has ever really been able to free me from
I want to do things in life
That I do because I want to do them
And not because fear has made me choose them as safer options
And not because fear has made me avoid other things
In some ways I think this has always been my biggest challenge
Probably from a young age
Seeing my dad experience panic attacks
Seeing him not feel like he was in control
Therefore not feeling safe in someways
As I’ve gotten older
That control has gotten more important for me
And I need to hold it firmly in my hands
I need to hold it because if I don’t
The world will fall apart?
I need to hold t because if I don’t
I will fall apart?
I need to hold it because if I don’t
I won’t feel safe?
Sometimes I curse the level of self awareness I have
Sometimes it does nothing more than get me stuck in a thought
When instead I should be in motion
I know what is right for me
I know what I want to do
I just need whatever part of me that is holding onto that fear to catch the fuck up
The warrior woke up first
And warriors aren’t afraid
I still don’t know what’s on the other side
But I took the leap
I’ve started the tapering
Let’s hope the scaredy cat version of me is not the one that wins
Let’s hope that this warrior side of me has grown strong enough to finally
Finally take back what is rightfully mine