The Ugly Side Of Recovery

I’m one year and 3 months post round 2 of Lemtrada (the immunosuppressive treatment I underwent for MS).

This was probably the biggest and scariest thing I’ve done in my life

There was caution and risk involved

But I did it anyway

Because my desire to be healthy outweighed my fear

That doesn’t happen often with me

Countless times, I’ve allowed my fear to be in control

To sit in the drivers seat

To call the shots

For whatever reason

That time

I just didn’t

One of the possible side effects of Lemtrada treatment is:

‘Immune thrombocytopenic purpura (ITP), a condition of reduced platelet counts in your blood that can cause severe bleeding that may cause life‑threatening problems. Call your healthcare provider right away if you have any of the following symptoms: easy bruising; bleeding from a cut that is hard to stop; coughing up blood; heavier menstrual periods than normal; bleeding from your gums or nose that is new or takes longer than usual to stop; small, scattered spots on your skin that are red, pink, or purple’

I think it’s something like 2% of Lemtrada patients can end up with it

Well I recently went away and while on vacation I noticed huge unexplained bruises.

Then came bloody stool

Some red spots

And a whole lot of anxiety and fatigue

Needless to say

My trip was a bit of a bust

Upon return I reached out to my Lemtrada nurse to explain what I was experiencing and she told me to get my bloodwork done

I did

And my platelets were 53

Normal platelet count is between 150-200

I really had to restrain myself from googling the fuck out of this

I sent my nurse a copy of the lab work

And bright and early this morning she called me

Seeing her name on my phone

I knew it wasn’t going to be a friendly call

She urged me to go to emerge at St. Mike’s ASAP

She was amazing at calming my already sensitized nerves down

So I got my people ready and we went

At emerge and after having to explain Lemtrada repeatedly, I had more bloodwork done and a rectal exam (that was fun)

After lots of waiting

Worst case scenarios playing in my head

And my constant companion of anxiety

My results were back

Platelets up to 87!

Not in the clear but an obvious improvement

With cautions about new bruising or headaches

To return to the emerge immediately

A little bit of good old fashioned fear: you could experience bleeding in your brain

Another blood test on the horizon

And an appointment with a hematologist

I’m headed home

Of course I’m scared

Because yet again

There is uncertainty

For example, what caused this all of a sudden?

What if it comes back?

What if I fall or cut myself?

What if I die?

Uncertainty and anxiety are like yin yang

They feed off each other

And it’s so fucking easy to slip into my old patterns

Fear, panic, sadness, wallowing

Then what?

It doesn’t change my potential outcome

But it does make this whole process that much harder

And why on earth would I ever want to make things harder for myself?

I refuse to allow this to make me a victim

Nope

Today I will do something that I don’t often do

Something my sister said to me

I will deal with this with a grace I don’t often possess

With strength and determination that I’ve not often felt

Gratitude that I often neglect

And I’ll just keep going

Because anything less isn’t an option

Not today anyway

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‘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.

‘There Is More Evil In The Least Sin Than In The Greatest Affliction.’ T. Brooks

Some days my damaged eyes feel as weary as my burdened soul

Some days it feels like I carry the world on shoulders that are tensed with anxious thinking

Some days the world feels as chaotic and unpredictable as the disease discarding lesions on my brain

Some days I feel so jittery that my nerves feel like they’re fraying and uncovering more than just damaged myelin

Some nights I lay awake not able to sleep even though my days are consumed by an overwhelming fatigue

Some nights it feels like electricity is coursing through my limbs and extremities

Some nights I feel like not waking up in the morning still wouldn’t be enough to get rid of all that’s wrong

Sometimes there are moments when I think that even a lifetime isn’t enough time

Time to shed all the broken and irreparable pieces of me

Time to start over

Time to begin again

Or maybe a lifetime is all it takes

To be gifted a new body and mind

And leave all that affliction behind

In the past

Where it belongs

Buried and covered

In someone else’s grave

The Odds

I find myself thinking in terms of:

When I get better

For example

When I get better, I’ll change my Paxil

Or

When I get better, I won’t feel so down

Or

When I get better, I’ll finish my degree

The list goes on and on

Sometimes it’s things exciting like travel

More often than not

It’s simple things

Like

When I get better, I’ll go for walks with Joey and my dogs

Ultimately

It always ends with me waiting for a time when I’ll feel better

Always waiting for a time that may never come

Then I think to myself

What if this is as good as it gets?

I mean

Really

And what if it is?

Does that mean I throw in the towel?

Give up

Admit defeat

And then what?

So I started thinking tonight…

And bear with me

This is wild

….

What if I just stop waiting?

…..

Dun dun dun

What if I stop waiting for a future that might never come?

What if I just start living like this is as good as its ever gonna get?

There is something so incredibly freeing about that

It’s difficult when the people around you encourage you to think of how much better things can get

As well intentioned as it is

It just doesn’t help

I’m so fucking sick and tired of waiting

I’m so tired of hoping

Fuck waiting and hoping and wishing

Maybe it’s time that I just start living

For today

I mean…Yeah maybe things will get better

But I just don’t want to waste my time waiting for something that is only possible (What is possible )

I like the odds of probable (What is probable)

It is probable (because there is evidence to support it) that tomorrow I will wake up

And feel as shitty as I do right now

But instead of going back to bed and waiting for a better day

I’ll just keep going

I’ll step out into the world and I’ll still feel shitty

But at least I will have fucking done something

And maybe for this to stick

I’ll have to keep reminding myself every day

That my life deserves a fighting chance

Doesn’t it?

That in order to really live

I need to remove both feet from inside of the grave

Any other way

And it’s just not probable

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

‘False Hope Is Just A Game Of Russian Roulette, I’d Rather You Just Open Fire.’ – K. Piper

I had a brief moment the other day

Where I felt like I was going to get answers and help

The solutions to persistent eye pain and nausea seemed just within my reach

I fell asleep last night feeling relieved and excited

About finally getting some help

I was almost giddy

If you can imagine that…

I woke up and got ready with my stomach in knots

I felt nervous and apprehensive

Unsure what to expect

See and herein lies the problem with hope

It hurts when it gets snuffed out like a candle

It hurts more than the very reason you needed hope

The ophthalmologist didn’t hesitate to shut down a plausible explanation for my symptoms

Without suggestion as to where to go from this point

I left the clinic

Dejected

I came home

Closed the lights

Crawled into bed

Remembering why hope is a nothing more than a dangerous game of Russian roulette

And I’ve never liked the odds

A typical fight between a couple where one has MS

Person with MS (now referred to as ‘MS’ says to their partner who does not have MS (now referred to as N/A) ‘You seem unhappy. I’ve been noticing it for awhile. It appears to me that when I flare up, you get very stressed become unhappy.’

N/A: ‘What? Me? No. Sure I worry but I’m not unhappy. It’s work and (insert other things like kids, money, etc).

MS: ‘really? It seems to have really started after my diagnosis.’

N/A: (immediately defensive)

MS: ‘I mean, I know I gave you an out after my diagnosis (out a term many MSers are familiar with) and you didn’t take it. But that’s the thing with MS sometimes it gets worse. And I know this hasn’t been easy for you.’

N/A: ‘Exactly. I don’t want to leave. Why are you even bringing this up?!’

MS: (annoyance increasing) ‘Look, can’t we just talk about this? I’m concerned about how this affects you and in turn me.’

N/A: ‘I deal with it okay? You don’t have to worry’

MS: ‘But that’s the thing, you’re not dealing with ‘it’. You’re snappy (insert other words like ‘cranky, pissy, never home, drinking too much and etc)

N/A: ‘Am I supposed to be happy with it?!’

MS: ‘Thats the thing though. You acting so unhappy about my illness makes me feel worse about it. It makes me feel like a burden and I feel like that’s making you miserable. And how can I work on accepting my illness when you’re so miserable about it?’

End scene

Thats the thing

You know

The one at the end of the day

That keeps you up

Worrying over

Going to groups and learning about how to accept a crazy fucked up illness like MS

And not getting sucked under by the sadness and fear that comes along with it

But it is so hard to accept something so life changing

For the MSer

And for the people around said person

There’s such a strong part of me that does not want to accept having MS

I don’t want it to be a part of me, my life or my health for that matter

It seems self defeating to accept it

But it’s not

It’s the opposite

It’s like a coming to terms with MS

A mutual agreement if you will

MS says to you ‘I’m sticking around. I’m moody and temperamental and I like to take over every aspect of your life.’

You respond ‘I know you’re here to stay, and I understand the moodiness…but I can’t let you take over my entire life’

MS says ‘Why not? I have already.’

You answer ‘I’m taking parts of my life back from you. I’ll still have you in my life but you just can’t have it all. So let’s agree that you’ll stick around and I won’t fight you anymore. But you have to understand that you’re only one piece of my life. A big piece, yes. But I just can’t let you take over everything.’

MS ‘What’s the harm in that anyway?’

You say ‘Because if I let you, you’d own me and I would disappear.’

And the curtains start to close

And you and MS walk to different stage exits

The audience knows it’s not goodbye

But rather just a little breathing room

And there’s closure in that

————

The end