Hope and all that could have been

What is hope?

When I read the following definition,

‘The feeling that what is wanted can be had or that events will turn out for the best’

It sounds far too subjective

A feeling

Wanting

Turn out for the best

If this was a gambling game

Who would take odds

Based on nothing more than feelings

Feelings impacted by beliefs, moods, opinions

And with an outcome that could turn out to be any which way

No guarantees

I don’t know

Maybe I’m too skeptical

Too cynical

Jaded

For hope

Or maybe

Hope is too vague

Too unrealistic

Too wishy-washy

For the likes of me

As hard as defining hope is,

Even harder is picturing it

What does hope look like?

I tried conjuring images of different things

Nothing exemplified what hope stands for

It all seemed too cheesy

Blue skies

Green pastures

None of which inspire

Feelings of hope

I guess if I try hard enough

I would say hope looks something like…

Eyes closed

Jaw slack

Relaxed posture

No tension in her body or features

Like she’s found peace

Or at least

Knows it’s coming to her

Calm

Serene

Confident

In knowing

That hope is tangible

And what she has hoped for more anything

Is hers for the taking

Maybe

One day

I will be able to close my eyes

And in a moment

Feel the tension leave my body

My breaths full

And Effortless

The racing thoughts fading away

The dull heaviness of depression being lifted

I wonder who that woman will be?

When everything weighing her down

Is finally gone

And it’s just her

The her that might have been

If life hadn’t turned her into someone else….

Just another uninspiring sick person

This is how I look when I’ve been waiting a week for the MS CLINIC to call me back after reporting a new symptom. I’m not surprised but I’m disappointed. Of course I want to live in a world where MS doesn’t exist but im not a dreamer so what I actually want is to live in a world where people with all types of illnesses can get the help they need. Especially when they reach out. Twice. It’s hard not to feel abandoned and isolated when literally no one can offer you help. Yes I know be strong, keep fighting and all those other phrases meant to motivate…but sometimes I want to lay my sword and shield down and just be a scared vulnerable person who sometimes just needs some help. This is what it’s like having MS in Canada, the country with one of the highest rates of MS. -rant over

Fuck MS

‘Life is a a journey I don’t have a map for’

MS symptoms are weird and scary and often come at the worst times

My initial symptom was optic neuritis which is an inflamed optic nerve and caused pain and blurriness

Along the road

I guess I’ve been fortunate that my mobility hasn’t really been affected

I don’t know if sciatic pain is associated with MS but that’s affected my mobility the most

Fatigue has been a constant

It’s not your regular tired after a long day at work

It’s more like a body draining exhaustion

Like you ran a really long marathon

But all you did was shower

And no amount of rest makes you feel less tired

I get a lot of headaches which no one has been able to explain the root of

But they happen often and last for long periods of time

I also have a lot of neck pain which radiates upwards into my skull

I’ve had numbness come and go throughout the years

Sometimes it just happens

One time I was going down the stairs at my old house

And my feet just stopped working

It’s like they weren’t even there

I fell down the stairs

That was a surreal feeling

The heat has long been a problem for me

Like the perfect weather for a relapse

And if you throw some stress into the mix

It becomes the perfect storm

I’ve had some burning mouth symptoms and itchiness that have both come and gone

More recently

I’ve had some pain on one side of my face that I was unsure of

But no real direction was provided to me

And a new one is this weird burning in my upper arm area

It is so severe that I made my partner examine me for any outward injuries

Of course there were none

It doesn’t feel like a sore muscle

It literally feels like I had burned myself with a hot pain and every time something rubs against it

It just exacerbates the burning pain along my arm

MS is often a lonely isolating struggle

Your family doctor doesn’t really know much about it

And the neurologist doesn’t really care about your day to day symptoms

So where do you turn?

It’s really easy to feel lost in the disease

It’s like someone has blinded folded me and dropped me off in the middle of nowhere

I don’t have any travel companions or anyone to help navigate

Now I’m somewhere in the middle of this weird nowhere land with MS

And I would just like a fucking map

That’s all