My Journey

A category which contains posts that summarise my feelings whilst on my journey.
(trigger warning: some posts are highly depressive and anxiety-related)

Having a Bad Day?

I know exactly what the bad days feel like.
You are most likely curled up in bed, or on the floor, not knowing how to get up and face the world.
You are longing for someone to remind you that you are worthy of this life, that you mean something.
You want it all to end…

Here are a few of my personal favourite posts that might get you through that bad day and make you realise your importance:

You are NOT your Illness

Defining Normal

You: Your Worst Critic

Letter To Myself

The Truth is Hard to Face

Invisible Illness Progress Portraits

love and hugs,
C xo

Please, don’t touch me.

Everything my Specialists put into me, makes me very, very sick. I make progress, tiny progress, but then lose it all when they come up with another crazy drug trial.
And each time they are become more and more convinced that it will help me.
Because they are desperate to fix the unknown case that is me.

They have this stupid “we have to try everything” approach, but by everything that means every drug on the market, and they refuse to believe that maybe my body needs a moment to rest.

Almost a year of digestive medication after digestive medication, pain killers, antidepressants, antianxiety medication, supplements and now steroids.

I have not slept in five nights, am in excruciating stomach pain and have constant nausea and dizziness.
Symptoms that I was finally gaining control over.
I was eating meals independently, and am now eating zero. Bye-bye to my weight gain and positive thinking.

What if the answer is very simple?
What if I just need a month or two medication free to see how my body adjusts? I do not remember the last time I was drugfree, how sad.
How do you tell multiple Specialists that you do not want to be poked, prodded, used as a guinea pig anymore?

I do not want to be touched, in fear of you breaking me.

Overwhelmed.

The feeling I get when I receive emails like this from my readers, is quite overwhelming.
How can my little Australian rants about illness, sadness and life touch so many of you?

When I am having a horrible day of symptoms,
when I feel like I have nobody in my corner helping me fight,
you remind me that I am far from alone.

(I have asked permission from both readers for this to be published)

Thank you for bringing joy to my darker days.
Just another reminder that we are not alone.

Feedback.

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.

I wish I could go back.

Here’s a short post due to the escalating brain fog caused by my new trial of medication. I started seeing a Psychologist last week. My Specialist(s) said it would “help me express myself during hardship”, and my friends and family believe it is the “cure to my illness”. They’re all probably happier/relieved that I’m talking to someone “professional” instead of them, because they don’t know how to respond to me when I say, “so, I want to die“.

My first words to him were, “I don’t want this illness. I wish I could go back and change time. This wasn’t meant to happen to me“.

His response was, “But it DID happen. It isn’t about karma, or luck. You can’t go back, you can’t wish it away. You have it, not because it was meant to happen, because it happened. I assure you that you will not move forth and accept, until you stop looking back and questioning why“.

I didn’t say much after that.

Psychologist = 1

Cass = 0

Emotion Overhaul.

The past two weeks have been a blur of new medication, neverending symptoms, new specialists, too many appointments, thoughts that have been cut short by antidepressants, a numbness I am familar with, and an everlasting silence from the outsiders.

The days are hard, the nights are hard.

Don’t you wish you could just pause everything for just a moment?

I just need one moment with myself.

One moment.

TLC.

Indisposed and Undiagnosed has quietly had an overnight renovation.
We now have a cute little logo, and a site that is much easier to navigate your way through.
To experience the full effect of the changes, please take a peek on a laptop or computer!

I would like to thank my followers for your endless support and love.
I have received many emails (through my current darkest of times) describing me to be the voice for those who are unheard, hurting and also lost in illness of all kinds.

A Chronic Illness blog must shine a light on the positives and negatives.
In order to spread awareness, we must share an accurate account of our good and bad ordeals. They may be terrifying to write and read, they may also be incredibly depressing, but they are spreading awareness.

We are here, we are fighting, we are waiting, we want to be heard.

I am appreciative of your concern over my wellbeing, every comment I receive, every email I read.
I hope you continue to follow me on my journey.

May there be brighter days ahead for all of us

C, x

We Found Something… Oh Wait, It’s Nothing.

When you have spent what feels like a lifetime searching for answers, you would know exactly what I mean by Results Day almost always being a let down.

You walk into the appointment with more fatigue, than hope.
Occasionally the Doctor surprises you with a “we found something!“, but that Something just turns out to be your body playing a trick on you.
That Something will disappear on the followup test, or it won’t be as bad as they initially thought.
The Something actually turns out to be one giant Nothing, and you fall back to square one.
All of the excitement your Doctor just experienced, turns into a “You might want to consider seeing a Psychologist

I’ve done it before.
I have walked out of appointments, swearing I will never return, never have another test, never have another soul-draining conversation with a Doctor or Specialist.
But you and I also know that as much as we despise it, we go on because we have to.
We will always choose health over being unhealthy.
We will always want that one answer, that one management strategy, that one medication that keeps are symptoms at bay.

So, we do have hope.
But our little piece of hope is sealed in a box,
inside a giant vault,
buried in the ground,
with cement covering it.

It is the last piece we have left.
If we can’t get to it, it won’t break, but we know it is still there… hidden.

I have not heard “news” about my health in months. It was a diagnosis of a rare stomach condition, and then a lot of confusion as to why I was not responding to medication, and why my symptoms worsened rather than eased. I was told that there would be no more tests, that we had to learn to manage the unmanagable.

And all of this time I sat there thinking, you have missed something.

Well it turns out that they did miss something.

My recent bloodwork from last week showed an increase in my Amylase (Pancreas Levels). My levels had not been normal since July 2014.
I was tested four times from then until now, and they slowly rose from a normal rate of 50, to 88, to 110, and now at 125.
But nobody pointed it out, and I am unsure of why.
The top of the sheet says “abnormal” in big, bold letters.
Not hard to notice, darling.

As I am petite, don’t drink, don’t smoke, eat incredibly healthy, apparently the “we better keep an eye on this” should have begun around the 88 point mark which was last year when I was recovering from the Shingles Virus.

I worry that Doctors are becoming lazier with patients of Chronic Illness.
We request more tests, and maybe they honestly believe that it is “all in our minds” so they just take a quick glance over our results, instead of being more thorough.

So, it’s off for another Ultrasound and a Gastroscopy this weekend to get to the bottom of this Something they have found. My Doctor explained briefly that IF my Pancreas is inflamed, it could be causing my usual Gastroparesis symptoms to flare. Apparently Pancreas problems also cause nausea, stomach cramping, trouble digesting and pain.

Nobody predicts the Pancreas.

But if I’m being entirely honest, I doubt it is something as simple as my Pancreas being inflamed. It sounds too… easy. I don’t want to get too excited, because if I do and am let down, I fear that it may be the end of my sanity.

But here’s hoping that this Something is actually a Something.