helpless

Tired.

My stomach is aching.
It hasn’t been this way for months.
I can feel every tiny thing that I consume, struggle to digest in my stomach.
The medication is meant to work.
Why isn’t it working?
How did my stomach just… change?
I think back to my diet over the past few days.
I must’ve slipped up, I must’ve slipped up somewhere.
But I can’t find where I went wrong.
It bubbles and gurgles away; bile rising to the back of my throat.
I sit outside for air, I drink digestive tea, I chew Peppermint Gum, I take anti-nausea medication, anti-stomach cramping medication… anything and everything.
The feeling doesn’t change.

I scroll away at Social Media, feeling further isolated from society.
Birthdays being celebrated under the stars,
Falling in love and going on romantic dates,
Exploring the world,
Working for great companies,
Absorbing knowledge through courses,
Tasting new cultures,
Engagements, weddings, children,
Conversing with friends over coffee…
And meanwhile, I am stuck here… alone.

This illness has stolen everything from me.
I am forced to cancel on people for gatherings because I am too unwell to attend.
I feel an anxiety when my symptoms are at their worst – I feel embarrassed to be in public. I feel embarrassed to feel nauseous, and have to hold onto someone for balance support.
On the other hand, people let me down too.
They aren’t willing to negotiate. They don’t understand that I’m unable to do “normal” things anymore.
If you’re too sick, then don’t come because I can’t put up with it”
“Lets go for dinner at this place… oh, you can’t. Maybe you can come with us when you are better”

Is it selfish of me to ask for these people to squeeze me into their routine, and alter the program a bit?
So, I can’t go out for dinner or ‘out’.
I can’t move from my bed.
But, you can come and sit with me for an hour?
Talk to me?
How silly, Cass.
People won’t alter their lives just because you are sick.

I was forced to stop working and studying, so my days are filled with mindless television and the struggle to walk to the bathroom and back.
I am unable to drive, and most days I am unable to look at my laptop screen or mobile.
I sit here and watch the sky change colour from dawn till dusk, and repeat.
Meanwhile, everyone is off living their lives.
I am forgotten.
My sibling works now, as do my parents. They are rarely home, and IF they are, we usually have appointments to attend. They do so much for me – their entire life has been revolved around me. When they decide to go out with friends, on days like today, I nod my head in agreeance.
I will be fine on my own, I tell them.
I lie.

Inside, I’m crying out that I need them to stay. Stay here so I am not tempted to leave.

No. They need to go. I need them to live their lives, even though mine has stopped.
On the days like this, where the depression swallows me, I picture my lifeless body hanging from the outdoor gazebo.
Why me? I ask. What did I do?
They can’t fix this, nor the Doctors.
Nobody truly understands, no matter how much I explain it to them.
Nobody understands until they go through it.
I rewrite my Goodbye letters over and over.
They are not perfect yet.
I’m tired of feeling, of being hopeful, of listening to advice, of fighting my own body. I’m tired of being told what to do, what to try. I’m tired of missing out. I’m tired of falling behind.
I’m so tired.

Diagnosis Part One.

I’m not sure about you, but I have dreamt of this day for a long time now. The moment when the doctor sits you down, rests one hand on your leg and puts his sympathetic facial expression on and says, ‘We finally have an answer. You have…’

They have an action plan for you, maybe some medication to ease the symptoms and you are opened to a community of fellow sufferers.
In the back of my mind, I never thought this day would come. That I would rott here for the rest of my life with these symptoms, wasting money on specialists and medication and never be myself again.

Today, I received a call from one of my Gastroenterologists. I can tell you that I was not expecting a call this early, or for her to begin our conversation with ‘we finally have an answer. You have… a severe case of…’

Gastroparesis.

(Gastroparesis:
– partial stomach paralysis when digesting food.
– longterm chronic condition with no cure
– symptoms usually include: chronic nausea, loss of appetite, bloating, stomach pain, body aches, heartburn.
– Leads to rapid weight loss and malnutrition, depression, anxiety and a range of other great symptoms
– usually found in people with Diabetes, Autonomic Neuropathy, Neurological Conditions and damage to the vagus nerve)

I said nothing.
‘It’s unfortunately rare for someone your age to get this, and this severe…’
My heart sunk.
‘Young people just don’t get this out of the blue… We have spoken about it and think your body has a virus that has unfortunately caused it… It could be causing your other symptoms. The drug we prescribe for sufferers is Motilium but we have already trialled this on you and it showed no success…’
I tuned out at this point.
A rare condition – of course.
You keep coming back to this mystery ‘virus’ that nobody can seem to locate, or name.
It doesn’t explain the dizziness, or maybe it does.
There is no cure.
You have already tried the prescribed drugs for management with no success.

You have already changed your diet.
We are still stuck in limbo.

I cried – pretty hard.
She assured me that we would keep trying.
She encouraged me to speak to my Doctor tonight, and that this wasn’t an overall “bad result”. In order to properly treat it, we must find try to find the underlying cause.
I unfortunately have to wait a few weeks to see my Gastroenterologist, because he is booked out.
We wanted an answer, and now we have… half of one.
Not even half… A quarter, maybe.

The rest of the conversation was a blur.
I thought I would be happier with a name, but I’m quite the opposite.
You search for so long, you lose everything you had; all to receive a partial diagnosis of something rare that is yet to be helped/cured medically?
I don’t know what to do, I don’t know what to say.
I have so many questions.
Am I happy that it has a name?
Sad that it is rare and hard to manage (in my case)?
Relieved that I am not crazy?
Upset that they still think there is an Invisible Virus behind it?
Where do I go from here? Neurologist? New doctor? New specialist?
What treatments do I take/trial?
How do I improve?
Will I ever eat normally again?
Will I ever put on weight, or will it keep decreasing?
How do I stop the nausea, the unbearable pain?
What the hell is making me so dizzy?
How on earth did I get this?
I am twenty-two.
How should I really feel?

The uncertainty, the loneliness, the disappointment.
Today feels like the beginning,  all over again.