Disclaimer:

I write because it feels good. I write because I have stuff to say. I write because I like seeing my words laid out in front of me. I write with myself in mind as the audience. I don’t write for compliments or pity. I don’t write to see how many likes or follows I get. I write the way some people need a cigarette to relieve the tension. It needs to come out. And it will. One way or another. This just happens to be the more positive way for it to do so.

I’m in a mood

The kind where I’m starting to doubt whether or not the treatment was even worth any of it

I’m approximately 2 months and a week post Round 2 of Lemtrada

I’m really tired

I don’t think I’ve made it past 10pm more than a few times

I’m nauseous more often than not

My eyes hurt

Back and leg pain

The laundry list could go on

I’m tired of feeling shitty

I’m tired of complaining

I’m frustrated

I’m irritated

And I’m sad

The me in my head

Isn’t this person

She’s out there living life

Not holed up in her condo

Hiding from the oppressive heat

Writing and feeling sorry for herself

That makes me so angry and disgusted with myself

Like I don’t even know this person anymore

I want to shed this old skin

This body

This mind

It clearly has been dysfunctional from the very beginning

Hell even upon being born

I couldn’t go home with my mom

I had to wait in an incubator

As if to prepare me for the outside world

That too

Clearly didn’t work

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‘Nothing gold can stay’ -Robert Frost

You know that saying

The one that goes something about longing for a place you’ve never even been before?

Sometimes it’s not as romantic of a notion as that

Sometimes it’s a literal place you’ve been to

For me it was a house we lived in

A house we recently sold

To move into more affordable (read: for my situation) living arrangements

It wasn’t just concrete and wood

It was a home in a very real way for me

As an eternal ‘outsider

It can be tricky to find a place where you feel comfortable

Let alone a place where you instantly feel at ease

Most places seem unwelcoming or overwhelming

But not that house

I remember walking in

And seeing the grey walls and dark floors

And laughing to myself that it was like it had been renovated with me in mind

Finding a big bay window in the master bedroom was icing on the cake

I’d sit so often in my bed and look out that bay window and see the centuries old trees that lined the street

Finding comfort in all the beauty that had been there long before me

And would surely be there long after me

It wasn’t just the house

The street made me smile when I drove towards it

Smelling the amazing food of my Portuguese neighbours

Joking how even in the dead of winter they’d be out grilling up some food on a charcoal bbq

We would sit on our stone patio in our wicker chairs

Listening to the sounds of the neighbourhood

Music and cars and laughter

I can’t tell if any of it is even real anymore

Did I make it all up?

Maybe it never really existed

It should make me feel better

Less sad

Less nostalgic

It should make me hopeful that if a place like that could ever have existed

Maybe I can find it again

But I don’t feel that way

I feel sad and bitter and filled with regret

I feel certain in this moment

That my soul is so heavy with the weight of regret

That I’ll never be able to find the beauty of feeling home again

So on we go

My troubled soul and me

Perpetually lost

Always an outsider

‘How lucky I am to have something that makes saying goodbye so hard?’ Winnie the Pooh

Some days the light is so bright that all I can do is immerse myself in it

The pain I usually feel is overwhelmed by the natural beauty the light bestows

Upon me

And all I can do is worship at its sight

Like a pilgrimage to a holy site

I sit in bask in what can only be described as incandescent

The way it heats my face and my body is a reminder of how alive I am in this moment

When I turn away

I am reminded how fleeting beauty can be

And how this moment may not last forever

And there might be a time when I can no longer see the beauty right in front of me

But memories fade and I want proof that this moment existed

I take a picture and write a poem

And hope that something gets imprinted onto my heart

So that I may be able to conjure up these feelings on the days when I just can’t find the light no matter how hard I try

‘Three things cannot be long hidden: the sun, the moon and the truth.’ -Buddha

The thing with chronic illness is that it takes away your sense of hope

See, despite what ‘people’ tell you

There is a very real possibility that it won’t get better

In fact, with a disease like MS, there is the distinct possibility that it can always get worse

Much worse

So, somehow you’re ‘supposed’ to remind yourself on those bad days

That it might be bad now

But it could always be worse

As if that notion is the balm to ease this ache

Sometimes, I grit my teeth and force myself to smile and nod along

Play the gracious and zen like ‘sick person’

Yes yes I’m nauseous pretty much 24/7, my body feels like an 80 year olds and my eyes hurt

But sure to ease anyone’s unease with my illness

I can put on a little dance

And play the part

For like a minute

Or two

Then the act starts to crumble

And like Cinderella fleeing the ball before her carriage turns into a pumpkin

I crawl back into bed and think to myself

That’s not who I am

I can’t make myself be someone else

No matter how hard you might want me to

No matter how hard I might want to

I’ve been there and done that

In the end

I’m always still just me

But I think I’d rather be that uninspiring sick person

Than this caricature of me that makes the rest of the world more comfortable

After all, those caricatures always get tossed out in the end

‘The caged bird sings with a fearful trill of things unknown but longed for still and his tune is heard on the distant hill for the caged bird sings of freedom.’ Maya Angelou

I want my soul to know peace while it’s still on this earth

I don’t want to die with a troubled soul

More importantly, I don’t want to live with my soul so conflicted

When it’s time, I want to leave this earth free

And without my soul burdened by regrets

Weighed down by all that could have been

I don’t want to be just another sad story with an unhappy ending

Easily forgotten and replaced

I want to experience the moment my soul is freed

Like a caged bird finally freed and allowed to soar

I want to release the deep sigh that can only come from relief

Extending my limbs into a world I’ve never known

Where my body is no longer forced to be on the lookout

Always tense with worry of what’s to come next

When I close my eyes and drift off into sleep land

It’s vague and hazy

Like a dreamlike state

I imagine I know peace in my heart and soul

Through only a glimpse of what it might be like

It’s magical and beautiful

And completely gone before I’ve even opened my eyes

Only a distant hazy memory of what could only ever be a fairy tale

For a soul as tarnished as mine

“We looked for the easiest way out: a separate reality.” ― Paulo Coelho, Veronika Decides to Die

My hair is falling out

My eyes hurt

And I’m trying to remind myself why I did this fucking treatment

This weekend passed by in fits of long naps

When I’ve been awake, I feel tired and irritated

This is the stuff no one tells you about chronic illness and the shit you do to your body to ‘get better’

I’m almost two months post Round 2

I did my blood work

With much greater ease

The first month of the next five years

There’s so many thoughts rumbling around in my head

And even trying to make sense of them in writing isn’t doing the trick

I went to the optometrist and while my vision hasn’t gotten worse she was concerned over my eye pressure and appearance of optic nerve

She said it didn’t have anything to do with my optic neuritis episodes

Glaucoma?

Being sent to ophthalmologist for more tests

I went to the group again on Friday

The topic was the difficulty in decision making

Funny since I’m struggling with this long term disability decision

I came home feeling understood

Something that’s always evaded me

It was a wonderful feeling

That I’m trying to hold onto

But it’s just out of my grip

Like the Banksy art on my arm

I’m reaching for it but it’s just passed my reach

Unknown

It’s so ironic how in the click of a ‘send email’ button, your mood can change drastically

I was feeling decent

Dare I say optimistic (I know, my first mistake)

I met with a social worker at the MS clinic yesterday

And after my awesome group on Friday

I was able to put so many of my thoughts into words to express to the social worker

We discussed numerous things including my difficulty attaining acceptance and my work woes

We discussed my worries with applying for LTD

With not having a job

Not having it be a part of my identity

Of what people would think

And most importantly how I would see myself

The social worker told me to listen to my body

I woke up today with a plan

I would email my employer requesting an application for LTD

In the event that at my next doctors appointment, I was ready to make a decision

So I did

And I got an email back quickly

Refusing to provide me with an application until my doctor provide them with those five questions they requested

Painting me as non compliant and difficult

The questions in case you’ve all forgotten are:

‘1. A description of any medical, physical or other restrictions which may result from your medical condition and which may impact on your ability to perform your job duties and attend work on a regular, full-time basis, meaning five days per week. (Please note that we are not asking for any diagnosis or details of your medical condition, other than as they relate to any restrictions it may have on your ability to perform your workplace duties and ability to attend work regularly.);

2. A prognosis from your physician as to the likelihood that your medical condition might improve, such that any current restrictions and/or modifications might not be required in the future, or may be required to a lesser degree;

3. A prognosis from your physician as to the likelihood of your ability to achieve regular, full-time workplace attendance (i.e. five days per week as opposed to your current average of four days per week) in the reasonably foreseeable future;

4. Alternatively, if your physician determines that it is unlikely that you will be able to achieve regular, full-time attendance in the reasonably foreseeable future, whether it is also likely that your attendance will tend to decline in the reasonably foreseeable future; and

5. Any suggested accommodations or recommendations your doctor may have for employer to allow us to better accommodate your situation.’

I wonder how many of you non MSers think these questions are no big deal

Easily answerable

But to someone with MS, these questions are repetitive and lack insight into what a chronic illness is

I jotted down my own answers beside each question:

1. Chronic fatigue, visual impairment and pain, anxiety and depression (both of which are physiological symptoms of MS), chronic pain and headaches and nausea

2. Unknown. Chronic illness is unpredictable and incurable

3. Unknown. Chronic illness is unpredictable and incurable

4. Unknown. Chronic illness is unpredictable and incurable

5. Possibility of patient applying for LTD if you ever send her the fucking form.

I asked again for the application and she refused.

Bah. I’m tired now.