Chronic Illness Awareness

An informative category filled with my resourceful posts; aiming to spread awareness and provide support to sufferers.

it isn’t fair.

Sometimes you just have to turn off your phone,
lock yourself in a dark room,
shove headphones in your ears,
and cry your fucking eyes out.

Scream every lyric to every heart ballad you can find,
because life really sucks,
and you were dealt a shit deck of cards,
and it isn’t fair, it isn’t fair.

Invisible Illness Progress Portraits (IIPP)

A roughly edited conversation between my Acupuncturist and I which sparked this idea:

Cass: “We said that I should be back at work by this time. I don’t think that is going to happen anytime soon”

Acupuncturist: “You’re right, it probably won’t happen anytime soon, BUT we have made progress”

Cass: (thinks to self) What progress have we made?

Acupuncturist = 1
Cass = 0

With Invisible and Chronic Illnesses we tend to lose sight of how much progress we have actually made, as we live with pain and other symptoms every day.

I know that I personally still walk around feeling saddened by how weak my body is. There is something inside of me that still cannot accept this, and thinks that if I am not back at 100%, then I have not made improvement at all.

If we show on the outside that we are feeling slightly “better”, society automatically assumes that we are cured from our disease. They cannot understand that we still suffer, but have made slight improvements, or that we have learnt to manage our symptoms better.

If you are having similar thoughts and are currently drowning in symptoms of your Chronic Illness, let me firstly tell you that you are far from alone, and it DOES get better.

Now, I can see you all of the way here from my desk in Australia.
You are rolling your eyes, you are shaking your head, you are sighing because you have heard that statement so many times before. You will tell me that I don’t understand, that I do not feel what you feel.

But, I do.

I know how you feel, because I have felt the same way for almost a year fighting my own illness and inner demons, and my fight is FAR from over.
I wanted it all to end, and have contemplated suicide more times than I can count on two hands.
I saw no reason for me to stay here in this world if I had to continue fighting this way, being a guinea pig for Specialists all over the city, feeling this neverending loneliness.
I was tired of the appointments, and the dead-end answers I was reaching.

I was even more tired of taking medication for no solid reason, the money coming out from my account and most importantly, hearing people tell me “it will get better”.

But I’m here to tell you that it DOES get better, and I have discovered a way of proving it to you.
I wish someone showed me this ten months ago, so I could’ve started learning to love and respect myself, and my body.

I have made up with a term called Invisible Illness Progress Portraits (or IIPP) where you take a photo of yourself once a fortnight (or month), and store them in a folder on your laptop or print them off and attach them to a calendar or poster board. I write how I was feeling at the time of each photo, and obviously date each of them.

I know that taking a photo of yourself during illness is terrifying and probably the furthest thing from being considered as “attractive”.

We are obviously not going to look like Kim Kardashian in her published Selfie Book, and that is fine because THAT IS NOT THE POINT OF THIS.
The point is to begin a collection where YOU can actually SEE the progress you have made, and so that when you are a year from now you can look back and realise how brave and strong you really were.

And when Specialists like mine say “you have really made progress”, you can say “Yeah, I really have”.

You don’t have to publicise it. Keep it as a present for your future self.
If you do not want to take photos of your face, by all means take photos of something that you have conquered in the face of your illness. For example, a bigger meal portion, a trip to the Doctor, a walk to the bathroom.

I myself have only begun this, so I don’t have many photos of myself during my rougher illness days, (that’s where my regret comes in) but looking back on the photos that I do have, makes me realise how far I have actually come.

I have a few scattered over the months to show you, to give you an idea.

Top Left: April 2015 Bottom Left: June 2015 Top Right: Jan 2015 Bottom Right: Dec 2014

Top Left: April 2015
Bottom Left: June 2015
Top Right: Jan 2015
Bottom Right: Dec 2014


Top Right: Early August 2015 Bottom Right: Me, today! Top Left: June 2015 Bottom left: July 2015

Top Right: Early August 2015
Bottom Right: Me, today!
Top Left: June 2015
Bottom left: July 2015

I was severely underweight from living off of dry crackers, water and mashed potato, my skin all over my body was riddled with acne and I could not walk more than a metre alone. You would never have caught me wearing anything but an oversized jumper and loose leggings, as I was too embarrassed of my protruding bones, and I felt absolutely horrid every single day.

A lesson I am still trying to learn is that Progress does not mean a drastic change.
Progress means slight/gradual.
You can walk to the fridge one day,
You are able to shower alone,
You are able to have two mouthfuls rather than one,
You have put on one kilogram or lost a kilogram.

All of these examples may seem tiny, but they are still progress!

So, take a moment and think about yourself. Tell me honestly how much progress you have made today, and it is okay if you can honestly say you have not made any.

I know that when I look back at these photos, I realise I can walk better than ten months ago, and more than before even though it is nowhere near close to what an average person/the old me used to.

I am able to eat more, without throwing up or feeling excruciating stomach pain.

I have less nausea than before, and less frequent violent dizzy spells which accompany.

As my images expand over the next few months, you will slowly see me wear a little bit of makeup, have the energy to straighten my hair, wear nicer clothing, and most importantly, smile.

This is me from a few days back.

This is me from a few days back, and I felt really good for a change.

In between these images, you will also know when I have gone backwards, because I am obviously not cured!
You will see the days that were rougher than others; where I cried beside the toilet bowl, where I had a cold towel over my eyes to help my migraine, where I could only stomach liquids all day.

And there you are again telling me that you don’t want to be reminded of such a time, that you want to rid the negativity from your mind. But if you don’t face who you were through the illness, how will you grow? How will you notice the change in yourself?

I can promise you that you will appreciate yourself more for having battled through those awful days and conquering when you thought that it was near impossible.

I know I do.

I would absolutely love to see your progress, (remember that Progress means gradual!) so if you are willing, send me an email via my contacts link!
Alternatively, you could tag IIPP or link to IndisposedandUndiagnosed in your post, and I will check the tag as frequently as possible!

Please, in celebration of Invisible Illness Awareness, join me in documenting your journey.

The Truth Is Hard To Face.

One day you are going to look back at this moment and realise that this was you at your strongest, not weakest;

That what felt like the end of the world, wasn’t;

That behind the tears and the ugly in Chronic Illness,

you were beautiful;

That you were destined for things beyond medication trials and side effects,

soulcrushing appointments and trying to keep food down;

And on this day,

you’ll know that you

defined brave,

and that you were loved more than you knew.

A neverending day of shaking, nausea, medication numbness, holding onto everything to stay balanced, an inability to digest, and my love for this toilet.

A neverending day of shaking, nausea, medication numbness, holding onto everything to stay balanced, an inability to digest, and my love for this toilet.

They Say,

They say, take this medication.
They say, eat healthier.
They say, exercise.
They say, it’s all in your head.
They say, see a Psychologist, Neurologist.
They say, This is how you do it.
They say, eat this, don’t eat that.
They say, it’s the medication’s fault.
They say, you need to think more positively.
They say, you need to get out of the house.
They say, this really helped my friend.
They say, you need to take control.
They say, you’re strong, you’re weak.
They say, you need to try harder.
They say, the results came back all clear.
They say, it’s Functional.
They say, you have to stop doing…
They say, you can beat this.
They say, I want you to stay.
They say, I’m busy, I’m booked out.
They say, I’m here for you, I don’t have time for you.

They don’t take the medication.
They don’t feel like the guinea pig.
They don’t feel the nausea every day, all day.
They don’t shake from exhaustion.
They don’t get side effects from multiple drug trials.
They don’t feel their body weakening.
They don’t know how hard it is to try.
They don’t know what it is like to drag yourself into an appointment, and to drag yourself out.
They don’t know how it feels to not be able to consume food, hold food.
They don’t feel the disappointment after each negative result.
They don’t take the advice they preach to you.
They don’t realise how slow time goes.
They don’t feel the isolation.
They don’t rely on the Government.
They don’t believe in anything other than Western Medicine.
They don’t feel the desperation.
They don’t have to stop dreaming.
They don’t know how to sympathise.
They don’t know how to help.
They don’t understand.
They don’t know how little “sorry” means when they haven’t experienced.

R U Okay?

Tomorrow, (September 10), Australia partakes in R U OKAY Day.
For all of my followers who may not have heard of the day – it is a campaign targeted at changing the behaviour of people in regards to reaching out to those who are suffering.
This campaign is aimed at Suffering as a whole – this may include sufferers of Mental Health issues, illness, financial woes, even someone who is simply having a bad day.

This year, they have also added an interactive section where you can connect to Facebook and thank someone who has been there for you, who has taken time out of their day to listen to you, and who has spread awareness within the community. You can make known that they have done a selfless deed by thanking them via the website.

A family who suffered from a chain of mental health and grief themselves, began the campaign, and rely on the people of Australia to unite and spread the word. This day should not be celebrated once a year. It should be effortless to ask someone Are You Okay on a regular basis.
But, I understand.
Some of you are busy, some of you don’t know how.
Well, here’s your chance.

So, what is asked of you?

You are encouraged to send a message or make a call to your loved ones, friends, someone who you haven’t spoken to in a while, a stranger whom might be struggling, and ask them the big question, Are You Okay?

There are people suffering everywhere, but mostly in silence. They are not willingly open up and bombard you with the problems that they are struggling to face and manage.

The question itself might not mean a lot to you.
You could disregard this day altogether and give an excuse that sounds like;
“I am too busy”
“This is a stupid idea”
“I do not have time”
“I don’t know how to respond”
“I don’t know how to help”

You are entitled to do/think as you please, but I know that if it were you who were suffering, you’d want someone to make the effort for you. You’d want someone to listen.

Take a moment from your busy schedules, to reach out and check up on those around you.

Put aside anger, resentment, jealousy, grudges that have been held over petty arguments, the busy schedule you may have, and reach out to someone, or numerous people.

It takes less than thirty seconds,
to initiate conversation,
to ask those three simple words,
which might make someone’s day,
or save someone’s life.

So, please, I beg of you,

Be selfless,
Plant the seed,
Have the conversation,
Change a life.


For more information, please have a look at their website – https://ruok.org.au

#RUOKAY?

So I Succumb.

There were a few days of peace,
or maybe I had mistaken Your silence for my happiness.
But then you spoke again,
Reminding me that I am carrying the weight
of another body.
Having You chained to me,
dragging You along.
Time and days of the week,
just blend into one giant stream of nothing.
There’s a heaviness in my chest,
a haze of brain fog,
clouding my mind.
You constantly have a negative response to everything I think or voice,
until eventually,
Your responses become mine.
We are always walking in darkness,
never in light.
I try to shake free,
but can’t.
I want to find the way out,
but can’t remember which way.
I feel nothing,
and everything at the same time.
I am drowning,
but everyone is staring at me,
Watching me breathe.
I am crying for help,
to a sea of the deaf.
I am gasping for air,
as You pull me down further.
I must escape,
but You won’t let me.
Your weight is too strong for me,
So I succumb.

Lifeline.

I thought yesterday was my boiling point, but apparently, it was just the final bubbles before the real explosion.
I had Acupuncture this morning.
I remained quiet the entire way through.
That’s not usually like me. The poor guy can’t shut me up.
When he left the room, I cried.
I came out feeling incredibly lost.
The burning pain in my chest has been there for days now. First, I thought it was everlasting reflux. It turns out that it’s my heart telling me I am stressed – the everlasting anxiety.

My parents and friends are whinging about having to drive me to and from appointments, but what about me? Does anyone think of the patient? I don’t want to be poked and prodded (literally) and have medication shoved down my throat. I don’t want to be the guinea pig, with no results. It has been nine excruciating months of pain, nausea, hospital visits, appointments in the middle of nowhere, test after test after test, scans and negative results, false hope, body changes, negative feedback and whispers.
So, when I got home, and a family member said something that pushed me over the edge, I literally broke.

A violent rage came over me.
I suddenly felt all of the pain over the past nine months, all rolled into one ball.
It was squashing me.

I haven’t driven Since November 2014.
I picked up my car keys in rage, went to my car and drove away. About ten seconds in, I started shaking violently because I realised what I was doing. I was driving. I am terrified of driving. I had a pre-existing anxiety towards it, but before I got really sick, I was practicing and was actually… okay at it if I had someone in the car with me. But then I got sick, and the thought of being dizzy and nauseous and driving, was all too much.

The anger in me somehow shoved the anxiety aside and I ended up at my favourite park. I’m not sure if I have mentioned this before, but I have an unhealthy admiration for trees, and this park has the most beautiful trees, and because of its secret location you are almost always surrounded by silence.
But today, being a Saturday afternoon, there were three sports matches on. Cars filled up every parking spot, parents were screaming at their kids to “catch the ball”, dogs being walked by owners.
I managed to find a carpark and just sit for a moment.
Something itching in me said, “just do it”.
I have nothing to live for.
I am sick with a condition that cannot be managed. My condition is still hazy. If the symptoms alone weren’t enough, Specialists don’t know what to do with me, my family don’t know how to handle me, and I feel incredibly alone day in and day out.
I do not remember the last time I smiled, or laughed, or enjoyed myself.
I have been too sick to think of anything but being sick.

Nobody cares was ringing through my head.
I burst into tears. I stared at every tree and wanted so desperately to drive straight into one.
But instead, I called someone I knew I shouldn’t have called.
He was the only one I wanted to answer.
If he didn’t answer, there was no hope for me.
If he did answer, then maybe he would give me a reason to stay.

The phone rang.

I waited, tears clouding my eyes.

He answered.

I cried harder, knowing I’d stay and fight another day.

When the Kettle of Care Boils Over.

I am currently crying as I type this post.
Prior to being ill, I was incredibly impatient and always stressed out over the tiniest of things.
Chronic Illness forces, not teaches, you to be patient.
You really do not have a choice. You have to take everything as it comes.

My symptoms have changed my personality and love for life, but not my care for others.
I have a tendency of putting others before myself, (to the best of my ability now that I am ill), and when they don’t do the same in return or are inconsiderate, I find myself slowly boiling like a kettle. I cannot stop caring for others. It is in my nature to put others before myself, time and time again, until one person or event pushes me to my absolute limit, and I boil over.
My explosion usually ends in tears and rage.

I saw a side of myself on the night of my birthday, which I was shocked by.
It was a horrible build up to the day illness-wise.
I was with someone close to me, and had not eaten or had anything to drink all day due to the nausea. I was exhausted, and so disappointed in myself for not being able to dress up, and go out to celebrate.
I took a bath and looked in the mirror, telling myself repeatedly, “You disgust me”.
The next moments are a blur because when I came out from the bathroom, something small was said which caused me to snap.

I screamed, I cried, I hit the chest of my friend over and over again with clenched fists until they ached. My actions cannot be excused, but for what it is worth, I am tiny, and he is very much larger than me. He said it felt like a child was hitting him. I lost all colour in my face. I fell to the floor. I started shaking. My chest closed up, and I said through wheezed breaths,

“I want to die, now”.

And I picked myself up and ran to the balcony.

What happened next can only be summed up as, a struggle.
I am thankful that I had him there that night, to pull me back.

I have seen him a few times since then, but nothing had been said, until the other night he was staring at me as I laid in bed, and he started crying.
He told me how the image of me that night – pale, weak and full of rage – haunts him.

And now, knowing that I selfishly used him as my punching bag, haunts me.

The past few months have been quiet.
No more “how are you feeling” messages, or visits.
There have been a few phone calls to talk about other people’s issues. I don’t know if I should be thankful for the temporary distraction, or feel jealous because the only issue I am facing, that nobody wants to listen to, is me being unable to manage my symptoms.

My body has been riddled by nausea, dizzy spells, weakness and an inability to digest anything I put into my stomach.

Day by day passes, and loose commentary flies around about me exaggerating my symptoms.
I notice that nobody cares like they used to. They are harsher towards me.
I sit in silence and absorb.
You are fat, you are too skinny.
You are unattractive, you are lazy.
You are selfish.
You are avoiding work.
You can’t do anything right.
You haven’t tried hard enough.
You are unappreciative.

Night by night, I reflect, and I feel the boiling water rising.

After a night of 2am stomach cramps, nausea that would not subside, snappy little comments from family and friends, I have hit that point of no return, again.
But this time, there was no screaming or rage, only tears and numbness.

I don’t care anymore.
I am alone.
I am weak.
I am worthless.
I am a failure.

My symptoms have taken out everything enjoyable about life.
I don’t think that the Depression ever disappears. Sometimes it hides for a little while, whilst your mind is preoccupied by the illusion of happiness. I have noticed that my brain latches onto the tiniest amount of positive energy that it can find, anything to keep me here another second. Sometimes it lasts a few days, sometimes a few months… but as soon as that glowing ray vanishes, I fall back into my pit, and deeper than before.

I don’t want to be here just as much as you don’t want me here.
And when I disappear, I don’t want the fake apologies, or the sudden interest in my illness and what I had to battle each day. I don’t want people to pretend like they gave a fuck about me.
I am trying to find some great reason to stay here, but I can’t.
My brain is completely clouded by negative thoughts, and I am so, so angry.
I am angry with the people I have heard from, and the people I haven’t heard from.
I am angry with my family, at strangers, Doctors and Specialists, but mostly, I am angry with myself. I used to be stronger than this.