Radical Self Acceptance

(This was from my MS support group I chaired last week)

Fighting reality only creates suffering. While pain is inevitable in life, suffering is optional. “And suffering is what happens when we refuse to accept the pain in our lives,”

Close your eyes and think about being diagnosed with MS

Think about the difficulties you encountered

Think about the hurt, pain and suffering you’ve experienced because of it

Think about all the medications and treatments you’ve tried

Think about how many times you’ve gotten your hope up for some miracle cure only to be let down

Think about all the time you’ve been angry, depressed or lost because of having MS

Now open your eyes.

Look around

You still have MS

So does everyone else in this room

Nothing has changed

simply because you deny it exists.

It is still there, waiting for you to deal with it.

“When you open yourself up to accepting the present moment precisely as it is, with no judgments, you are free to look at all of those puzzle pieces of the present moment and start to piece them together. “

What if instead of having all of that, you simply decided to radically accept your reality that is having MS?

Acceptance isn’t giving up

It isn’t resigning yourself to the illness

It is simply accepting that whatever is happening is happening

Acceptance is about letting go of the person you thought you were and the life you thought you had and making the most of the one you actually have

Some helpful strategies to practice radical self acceptance:

Acknowledge and learn how to cope with negative thoughts and feelings

Rewrite your story

Find activities that you enjoy

Spend time with the people you love and that make you happy

Note:

I’m not even close to being there yet…but I want to be

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‘And sometimes, against all odds, against all logic, we still hope.’

Do you ever think to yourself ‘I just need to catch one break, and then I’ll be okay’’?

The odds seem favourable

Out of the 365 days of the year

How hard could it be to find one good day that will make up for all the rest?

It doesn’t even need to be an entire day

Even one good thing during one day would make everything seem manageable

One day to make the other 364 days worth it

The problem isn’t in the numbers

The problem is that one thing always seems to be just out of reach

It’s illusive

Yet

Still

Somehow

There’s hope

Hoping every night before sleep

That tomorrow will be different

Hopeful that it will be the one day out of the 365 that will make all of this worth it

And so every night before you close your eyes

You take that piece of hope

You immerse yourself in it

You wrap your wish in hope

Tie it neatly with a big bow

And you wish so hard that when you wake

The new day won’t be anything like the last 13,140 days

and counting

Long Term Disability 😒

I’m tired and don’t feel like disguising what I have to say in a poem

For those of you that know it’s been a long week

Few weeks

Months

Entire 2018 really

Maybe more

I don’t know

I heard from my employer

I don’t even feel like cutting and pasting with my smart comments interjected

I’m standing at a precipice in my life

That I never thought I would be wavering on at 36 years old

Yet here I am anyway

Long term disability has been brought into the mix

I’ve been on Sick Benefits since April as my employer doesn’t have short term benefits

I now have to decide what’s the best decision moving forward

The key points are:

-My shitty attendance

-The unpredictability of MS

-The realization that my mental health has probably caused more lapses in employment than anything else

-Will anything change?

I’m under no illusions that having the best of intentions doesn’t equal being employee of the year

Nor does being an above average employee on the days you do show up

I get it

From an employers perspective

I’m more hassle than what I’m with

It’s always the same

Angela is amazing at her job

When she’s here

I’m tired of hearing that

Like I think my soul seriously can’t handle hearing that another time

Or feeling like I need to defend myself

Defend the ‘chronic absenteeism’

So long term disability is an option I’ve never wanted to pursue

For the following reasons:

-I fear falling into a depression being home

-I’m too young to be off of work

-I still want to work

-There are still so many kids I never had the opportunity to work with (even typing that had me ugly crying)

-I will feel embarrassment and shame at being off of work (that was difficult to admit but there it is)

-If I’m not a youth worker, what am I?

Some of the reasons may seem trite to you but it is what it is.

On the other side of the spectrum…

Reality of returning to my current employer:

-I will be under hard scrutiny

-I have no faith in an organization that has none in me

-The way I’ve been treated (though perhaps legal) has been insensitive, ignorant and disrespectful, nothing will change that

-They are holding the power of where they will place me and will continue to send me to the doctor for more medical documents until they get what they want

-As soon as I get a ‘pattern of absenteeism’ they’ll can me

-The stress of this will have a negative impact on me

The reality of finding a new job:

-Things will be great for awhile

-Once the honeymoon period is over and they notice my absences, it will start all over

-This isn’t about being negative this is about accepting my reality, and there will be absences. Lots probably.

-During a 6 month probationary period I can be canned easily

I’m curious as to how other people have come to the decision to stop working. Or hear from anyone who is off of work and their experiences with it. In other words, any feedback would be appreciated.

Maybe, just maybe…

I’ve started Project Taper Paxil on Sunday

I worked myself into a frenzy anticipating what might happen

I took an extra Ativan to get some peace

I saw my doctor yesterday and he reminded me that I could have put off starting Project Taper Paxil for another week

But I didn’t

Evidence to support the theory that I’m stronger than I think

The doctor mused that it’s been a tough year for me

I guess it has, hasn’t it?

I can pretty much unequivocally say this is not where I thought I would be at this point of my life

At 36 years old

I had hoped for something very different

And that’s even with several revisions

But what do you do when that path leads you to a dead end?

If you’re like me,

You might spend too much time retracing your footsteps over and over again

Trying to figure out how you got it so damn wrong

Did you miss a turn?

Did something lead you astray?

Or were you just unlucky enough to end up on that path to nowhere?

If you’re like me,

You don’t have answers to any of those questions

But you just can’t fathom starting all over again

Finding a new path to walk

Wishing that this new path will be the right one

Hoping that it won’t become another dead end

But

Maybe this time you won’t care about the destination

But

Maybe this time you’ll be content with the journey

And

Maybe this time it will be exactly what you needed all along

And

Maybe, just maybe

You’ll be happy

At last

‘I’m afraid to be alone with my own mind’ -Sylvia Plath

Here goes…Everything

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

Fear

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

But today

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

My life

A bruise by any other name

A bruise is like a badge

You’re not just handed one

You earn your bruises just like a badge

A bruise means you showed up

It signifies that you actually ‘did’ something for a change

That bruise carries with it the same honour as a trophy raised above your head

It says ‘hey world this might not mean anything to you but to me it means everything

Your bruise is one of a collection of bruises and scars

They are proof

In the flesh

That you’re real

That your battle is real

It’s evidence that you are still here

Inhabiting this world

This universe that you’re a part of

Left it’s mark on you

And you are treasuring it

Like the beautiful reminder that it is

Watching the marks build up

With a sense of awe

At what you’ve accomplished

In this life

Stretched out in front of you

Like a winners banquet

These bruises of mine

Look like victory

Hi my name is Angela and it’s been one week since my last infusion…

It’s been up and down

Steroids really fuck with my entire system

Most of the physical side effects have dissipated

Left over is irritability

More so than usual that is

I don’t know how last time around I spent an entire month in isolation

I’m seriously going mad inside

I’ve watched shows, played around with my hair, cleaned, planted some herbs on my terrace and slept

And thought

A lot

I’ve been thinking about what’s next with work, how the kids are doing, if this treatment will work, the upcoming Paxil withdrawal, how they really do get the caramel in the caramilk bar

And the list goes on and on and on

I’m not gonna lie

The Paxil thing has been at the forefront

I have been totally obsessing over it

I’m terrified

But that’s another blog entry altogether

Right now

I’m trying to make it to two weeks post treatment

And then I will rejoin the world

If it’ll still have me of course

Which has always been debatable

At best

Like me

Temperamental

At best