hope

Growth.

If you are stuck at home like I am most days, and are struggling to find something productive to do that doesn’t require a lot of energy – grow a plant.

You can start from scratch or you can purchase a baby bulb that has just begun its growth cycle.

Two years ago, on my twentyfirst birthday a girl I was studying with bought me a Pony Tail Palm Tree.

When I first got him, he was very small and only had three leaves poking from his root.
I neglected him.
I kept him in my bedroom, away from sunlight and rarely watered him. He began to shrivel, and two years later he was merely a tiny squishy root barely emerged from the dirt.

During my bedridden state of illness, I noticed the lack-of plant on my desk, and asked my Dad if he would help me move the plant outside into new soil.
My Dad frowned and said “I don’t think we can revive this one, Cass“.
But I held hope that we could.
A week after Replant Day

I sat outside in a blanket and watched Dad replant him.
On days of strength, I watered him.
I moved him into the sun.
I gave him plant food.

Eight months later, the change is incredible.
He can now go for days without water, and thrives off of sunlight.

Seven Months Later

You don’t have to plant a garden – there are plants that are easy maintenance. It gives you something else to focus on, and gets you outside for even five minutes of the day.
It is also beautiful to watch the life cycle!

During Chronic Illness, you must treat your body as if you are growing the most beautiful sacred plant. It will start off fragile, small and colourless.

It takes some time, and with other plants it takes longer. Some plants will go backwards; growing weaker before they grow stronger, where as others immediately thrive from a little love and attention.

Once you neglect your plant entirely, it will wither, as will your body.

But if you keep watering it, tend to the roots, and always make sure the petals and leaves are full of colour and are never curling; your plant will gain strength and grow.

Sleep On It

I was lucky enough to be asked by my good friend Paul to write a piece for his Blog Series, “Coping: This Is Who We Are“. Writers are asked to create a piece entailing their struggles with Mental Illness and how they are able to cope on a daily basis.

My piece, “Sleep On It“, was published on his site yesterday.
Enjoy!


When you look back on your teenage years, you usually have the memories of parties, being social with friends, planning future career ideas, finding your way through puberty…

I remember illness.

I was forced to grow up quickly, at a young age.

While my friends were having their birthday parties, I was at home on the floor; crouched in a ball with my mum trying to feed me Parachoc through my wails.

While everyone began working their first jobs, I was in an Adolescent Clinic for sufferers of Eating Disorders.

During Graduation, I had Glandular Fever and was bedridden.

My first year of university had many absences, as I was diagnosed with Grade II Reflux Oesophagitis.
 Depression was, inevitable.

And this depression eventually led to take the pain out somewhere.

I was about fifteen when I carved symbols into my forearms and wrists. I thought that if I was going to have them forever, they might as well have been interesting to look at. I remember when my Mum first saw the scars. It was a few months later and I was in hospital. The Nurse put an IV Drip into my arm, and when she left the room, my Mum caught a glimpse of the scars from the corner of her eye.

She gripped my arm between her fingers and hissed, “Never, ever do that again”.

And, I didn’t for a long time.

Her blazing eyes were enough to burn straight through me. I was afraid of her finding them again.

Fast forward a few years.

I had made it into University, was in a relationship and was eating anything I wanted. I was at the peak of my health. (For those who have chronic stomach problems, you would understand when I say that we all crave something we are not allowed to have. Mine was Curry).

There was not a dark thought in my mind.

I thought I had been cured.

I felt invincible.

Little did I know that Depression never really leaves. It waits, and even if you have years of happiness and health, it will return during your slightest weak point. It latches onto a part of you that is uncertain, vulnerable and misunderstood, and then it will literally feed off of you until you are worn out.

Fast forward another two years.
 Things were very different for me. Changes had come, and I was not good with adjusting to change.
I was in a new relationship – one that was challenging and causing me a lot of unnecessary stresses.
I had chosen to focus on my new passion – Childcare.

As I was balancing fulltime study and fulltime work in a Children’s Centre my immunity was shockingly low. Every flu, Gastro Bug, rare disease that the children had – I got too. I put work and study before my friends and before my family, and things progressively got worse.

I woke up one morning, with Shingles in my neck and scalp, and I was bedridden for three weeks. In this time, I saw a glimmer of its return within my nerve pain, telling me that it was here to claim what was rightfully owed. I shrugged the feeling off, and returned to work… pushing my body to extremities.
A month later, with nothing much changed, I woke up with Shingles again. This time, I was out for four months. I had a complete nervous system shutdown. I began cutting myself again. There were some days where I would lie on the floor in my room for hours, just staring at the wall, crying.

I felt so much, yet I felt nothing

It returned during that experience; swallowing me with a whisper.

One, two, three, four, five;
Once I caught a Cass alive.
Six, seven, eight, nine, ten;
I won’t let her leave again.
Why won’t I let her go?
Because she needs to suffer so.
Come to war with all your might,
but I won’t let you win this fight.

I did fight.

I fought until the end in December 2014. I woke up a few weeks before Christmas, and was unable to move. I had Chronic Dizziness, intense Stomach Cramps and constant Nausea. The Depression was having a field day with all of this negativity. But when I thought that this was as bad as it could get, the Anxiety attacks began.

I would be happy one moment and then absolutely terrified the next. My throat would close up, I would have difficulty swallowing and breathing and it felt as though I had a vice in my chest… ripping my muscle wide open. I stopped sleeping, eating, feeling anything but the symptoms, and the numbness brought on by the Depression.

I told my partner every day that I wanted to die;

that I would be much better off feeling nothing.

But I built up the courage to tell my Doctor.

Do you know what he said to me?

“There is no shame in having Depression and Anxiety,

considering all you have been through”.

If you are a sufferer, you would know that admitting that you have the problem is one of the hardest things to do. I gave him every excuse.

I am fine.

I’m bad, but not that bad.

I am not sure about you, but I feared anti-depressants and anxiety medication. I did not want to be addicted to something, or have the choice of abusing it. I refused it time and time again, until one day I had no choice.

I am still coming to terms with my suffering.

Due to my other health issues at the moment, I have decided to steer clear from the anti-depressants and anti-anxiety medication. I don’t recommend that choice to many. My circumstances make me feel that until I can manage the Invisible Illness and the symptoms that accompany it, the Depression and Anxiety will subside.

I will not tell you that I am miraculously cured and that there is a light at the end of the tunnel.
I will not tell you to not find relief from the darkness.
I will also not tell you that I know entirely how to cope with this.
But, what I will tell you is to sleep on it.

The advice was given to me by an online Psychologist. She told me that for each time I wanted to leave, to sleep on it/wait twelve hours. And if you wake up feeling the same way, sleep on it again. Find the tiniest bit of happiness in your life and hold onto it with the tightest grasp. My happiness was very small. Breathing the fresh air, feeling sunlight on my skin, sitting in a room with scented candles…but small as it may have been it kept me going.

Most importantly, you need to know that there is no shame in having Depression or Anxiety.
 There is no shame in asking for help, or telling your story.
 There is no shame in writing a post that expresses your negative feelings.
 We need an outlet, or else it continues to eat away at us.
 I know that most people live in the shadows of Mental Illness.
 We fear what it will do to our minds – that it will consume us.
 We fear the reaction from others – being seen as weak.
 We fear the medication – what it will do and the addiction.

I still have a long journey ahead.

And it is not going to be a casual walk with Toto down the Yellow Brick Road.
 I will continue to suffer through the bad days and nights.
 I will find every reason as to why I should give up.
I will struggle with managing the Invisible Illness and loneliness.
 But for each time that I feel this way, I will tell myself to sleep on it. 
I don’t know what will happen in the future,
 but today,

I choose to stay.

 

Diary from a hospital bed.

Thursday:
The walls are white, as white as I.
The cupboards are pale blue.
There is one chair to sit on for visitors.
The bed is high, and the pillows are too soft.
The lady next to me, eats and vomits, eats and vomits.
All of the patients are wearing white, but not I.
I’m in black leggings and a black tshirt.
They are staring at me.
Why are you here? They ask.
What are your symptoms?
What medications are you taking?
Pain scale from 1-10?
Here, take this tablet.
Have you tried…?

I am sick of answering questions and repeating this story. Nobody has asked me who I was before this illness… they’re only worried about who I am with it now.

Friday:
I have barely slept.
The nurses here are as lost as I am.
The nurse’s button isn’t connected so we each have an oldschool bell to ring when we need someone. The nurses cannot hear it. One poor old lady next door to me rang hers from 2-3am until someone came to her aid.

This ward wasn’t meant to be open,
the nurse said. It’s only half ready.
I haven’t seen many nurses today in here.
They’ve left me.
I saw my Dr once, but he was in and out as usual.
I had to fast from 12am. And then my IV was taken out and I was told to take Metamucil every fifteen minutes for THREE hours. I am amazed that my stomach kept it down. My nausea is incredibly bad.
The stomach MRI went for an hour opposed to twenty minutes.
I was interrogated by a Dietitian. Are you bulimic? Anorexic? Drug addiction? Abuse? What do you eat? How much? Did a life event cause this? Are you sure you aren’t forcing yourself to not eat?
Please stop.
I had a test for Addison’s Disease. Oh my, the pain. I was jabbed in the shoulder with a drug called Synacthen, and had nine blood viles taken from numerous veins.
I caught a glance of myself in the mirror today and burst into tears. I have faded to nothing. I am exhausted, mentally and physically.
I can finally eat after fasting for more than twelve hours, and I don’t even want to. I have no desire for food as all I can taste is Metamucil in the back of my throat.
I am trying to stay positive, but it is hard to not hate it here.
I miss my bed and family and friends.
I miss being able to shower in my shower.
I miss my food, and my routine.
Mostly, I miss my health, and I am reminded of why I have to stay here.

Saturday:
I’ve had a lot of visitors today, as I assume I shall tomorrow. I’m exhausted. A fill-in Doctor told me that my results came back as negative – I am ‘perfectly fine’, apart from having Gastroparesis. Apparently the only thing that showed was a semi-low white bloodcell count… sign of infection? He didn’t seem worried by it.
Strange, because I feel anything BUT fine.
I feel worse here than at home.
I’m quite dizzy, pale-faced, crampy in the stomach and bowels and very nauseated.
The Nurses keep giving me medication, upon medication. My little body is not used to it.
They make you feel so small; the Nurses and the Doctors. Or maybe it is just me…
I must await Monday for my usual Doctor to return.
I must remind myself that I’m not losing my mind. It’s a bit hard when the world is against you, and your body won’t negotiate.
On the plus side, I finally got a red jelly cup last night instead of yellow.

First world problems right here.

Sunday:
More sleepless nights.
The older lady next to me was moaning all night.
She moaned before sleep, during sleep, when she went to the bathroom. Constant moaning.
Then she started yelling in Italian. I assumed she was dreaming, or she was yelling at me to turn off my light.
I had nausea and intense abdominal cramping all night despite my efforts to get rid of it. I tried deep breathing, my acupressure bands, a cold towel, as well as every medication you can think of.
Maybe that’s the problem – the overuse of medication.
The nurses seem to think that because I don’t have any limbs falling off, or any scheduled surgeries, or visible symptoms that I don’t need to be attended to. I haven’t seen a nurse all morning. They think I am taking up space for someone who ‘really needs it’. Little do they know that I don’t want to be here either. My Doctor insisted. He seems to still believe there is an underlying mystery cause to my illness, and that we have no chance in getting me better until it is found. I wonder if he’ll feel the same tomorrow?
The dizziness is overwhelming. I tried to have a shower alone today, and held onto the railing fearing I would fall. My body is so weak. I miss little things like that… being able to enjoy a shower without fearing I’ll lose my balance.
There’s something about hospitals that saddens me. I’m not sure if it’s the general gloominess, or the fact that I’m the only young person I’ve seen in days of being here.
Tomorrow my Doctor comes to visit, which shall be interesting.
I can’t help but wonder – will I ever recover from this?

Friendship in the face of Chronic Illness.

One thing that my Invisible/Chronic Illness has allowed me to see, is the world in a new perspective. My life is no longer about the petty problems I faced years ago, and the superficial crap. In spite of all of the symptoms and pain I must face each day, my time and energy is now purely spent on keeping my stress levels at a bare minimum, managing my symptoms and surrounding myself with supportive and understanding people.

Chronic/Invisible Illness is a funny subject. Once you announce that you are suffering, (or they hear along the grapevine) you are suddenly bombarded by people contacting you.

I refer to them as the Prodders, as they literally begin mentally/emotionally prodding you; questioning, encouraging, pushing, reminding, assisting, annoying, hating, etc.

I have put them into a relationship wheel will that comprises of four categories:

Permanent Prodder:
The friends who never really left to begin with.
They:
– contact you frequently
– try to understand your symptoms
– send positive encouragement
– convince you to keep fighting
– are loyal regardless of the situation
– offer to assist in any way possible
– pay you visits voluntarily
– preoccupy you when they know you need it
– don’t pass judgement
(They are the Keepers, and I can safely say that I only have four of them in my life)

Reappearing Prodder:
The ones who you haven’t spoken to in five years, and send you a message to let you know that they are suddenly thinking of you and are there for you. They are usually 85% of your Facebook friends. Look, I appreciate hearing from anyone, but with some people in this category, I often wonder if they really care? Or if it is just an act of kindness out of guilt. They contact you in case the illness gets the better of you, and they simply need to clear their conscience of all that happened in the past. If it is someone you had a falling out with/drifted from, Illness makes you realise how petty it all was to begin with, and I would like to think that this would be the perfect chance to make amends.
I don’t have to feel guilty anymore because I messaged her saying, “I hope you are okay”, “So sorry to hear of your struggles”, “I’m here if you need anything”.
But are you really there for me? Or will I most likely never hear from you again?

Occasional Prodder:
The ones who contact you with a message that makes you question why you were friends with them to begin with. They are the ones you went to school with, spent every day at work with for a few years, the friends you usually had the most fun with. They are usually the ones who send you the half-hearted messages – the memes, random photos, rants about their ‘oh-so-big’ problems in life. They whinge about their fulltime job, or going out every weekend and being ‘oh-so-tired’. They have all of the time in the world to speak about themselves, but not at one point do they ask you how you have been/how you are/if they can be of any assistance. It’s too much of an effort for them. And don’t bother trying to talk about yourself, because I’ve tried that, and somehow they revert the conversation back to themselves.

Disappearing Prodder:
In my case, I’ve had a few of these. One in particular. We spoke every day at a routine time. They understood me in a way that nobody else could.
They are the ones who swore that they would be there through anything. The ones you have probably helped more times than you can count. They probably know you are sick and have been along for most of the ride, and then suddenly, you don’t hear from them anymore. It’s as though your illness has hit them all at once, and it is more pressure for them, than it is for you. They can’t find thirty seconds in their day to reach out to you, and they most certainly don’t have the patience to listen to you talk about your illness or feelings anymore. They can’t put aside any differences you may have, and simply be there anymore. They don’t know how to handle it, and disappear.

If you don’t know if your friend is alive or not; if you don’t remember the last time you heard from them; if you know they are going through a rough time, NOW is probably the time to send that message or make that call. Its not hard. I don’t need you to be here every day.

I don’t need you to feed me, dress me, take me anywhere (unless you offer). I don’t want to have an entire conversation based on my feelings and symptoms. All I’m asking for here is a little consideration and support.

If you can’t be there for me at my worst point, and if you don’t think I’m worth staying in contact with simply because I am ill, then why should I want anything to do with you?
Whether I’m ill or not?

Because, I have a very big heart.

I struggle to find a balance between forgiving people and realising how much they have hurt me by choosing to leave.  I find myself “settling” and allowing these people to crawl back into my life – instead of telling them that what they have done is NOT okay.
You should be there for someone if they are strapped into a rollercoaster like this one!

I truly hope that something awful like this illness doesn’t creep up and surprise you one day, because you will unfortunately be faced with the same problems as I am. Unlike you, I am the type of person who will probably still offer you support and guidance. Shame on me, hey?

This illness is 90% a burden, and 10% a blessing, because it has taught me to grow up, to see how small the problems I used to face really were, and to realise who my true supporters are.

To quote the finest Miss Monroe:
I’m selfish, impatient, and a little insecure. I make mistakes, I’m out of control, and at times hard to handle. But, if you can’t handle me at my worst, then you sure as hell don’t deserve me at my best.

You are NOT your illness.

“So, tell me about yourself…” is how one Specialist began our first appointment. He went on to tell me that he had to really get to know me, in order to understand how to treat me, and what my body could or couldn’t handle.

My response was, “I’m sick. There’s nothing interesting about me”
To which he said, “But who are you without the illness?”

I realised at this moment that I had allowed my Invisible Illness, to define me.
Please remember this introduction, as I quickly move forth a little.

I had a bad night with my symptoms, which seemed to have carried over to today. The more I focus on it, the sooner I notice that the chain reaction has begun inside of me.
Firstly the symptoms, which leads to the sadness, followed by the tears, an anxiety attack, and finished off with heightened symptoms.
I decided to research, which turned out to be a mistake (as well as a blessing for this topic post) and came across a post in which I was not impressed by. It had somehow received over ten thousand views/likes/hits, (the name I will not mention) and I am at a loss trying to figure out how/why. It did made SOME valuable points, but overall, the article pretty much stated that sufferers of Chronic/Invisible Illness need to ‘toughen up’.
We have to force ourselves back to work, to preoccupy ourselves.
We have to stop whinging.
We have to get out of bed and force ourselves to fight, or else we aren’t fighting back.
We must stop spending our time on appointments and in Doctor’s surgeries, and focus on management techniques.

You like tough love? Then this post is much suited for you.
But I, a sufferer of an Invisible Illness attacking my body, do not agree.
I have some days where my symptoms are controllable enough for me to see my friends, go to the grocery store or allow me to live normally. I still need assistance, but I do have good days.
But, I also have days where my body is so exhausted that I have to rest, stay indoors and rely on people for assistance.
It isn’t my choice.
It is the way things ARE.
Do not always believe what you read on the internet, or feel disheartened if you come across something as harsh as that.
YOU know YOUR body better than anyone, so don’t let others tell you otherwise.
The outsiders see black and white, but we are exposed to an array of colours.

I decided to write my own coping mechanisms whilst dealing with this nightmare.
Stop questioning/asking why
Let me check WebMD for a diagnosis.
Maybe I have lymphoma? Bacterial Overgrowth? An autoimmune disease?
I am being punished for being a bad person.
This is karma for taking things for granted.
Is it because you had two cheat days last week?
I am sick because of that messy night out I had a few years ago.
I am just overall unlucky.

If this sounds like you, then you must STOP.
I know how easily it is to fall into this frame of mind. I still do it when my days are overwhelming.
But, you are making things worse for yourself, not better!

Stop hating yourself
Make peace with your body, and mind.
This is NOT your fault, and instead of feeding your mind more negative energy, you could be surrounding it with positive.
Go to a mirror, and instead of pointing out the things that you HATE about yourself, (ie. The loss of weight, the acne, the nausea, the paleness, the hairloss) point out the things that you LIKE about yourself.
At the end of every day, write down something you are THANKFUL for, even if it is seeing that little bird perch itself on your window sill whilst you were stuck in bed all day.

Understand your symptoms
Confront/Organise/Control
You need to be able to live with the least amount of suffering as possible.
Admit you have an illness that can’t be diagnosed, and don’t be ashamed of that.
Observe your body and take note of what helps ease your symptoms or what worsens them.
Organise appointments, write a symptom or a food diary, a Medical Timeline, have a calendar ready.
Have Control. Only ask your body to do what it can tolerate.
Work WITH, not AGAINST.
And please don’t say, “I can’t”, because you CAN.
You may not realise it, but you do it every single day.
You are living proof of this!

Pinpoint your stressors
Stressors usually include:
– the Chronic Illness itself
– Symptoms
– Uncertainty of the future
– Financial Difficulties
– Immobility
– Insomnia
– Negative influences
– Feeling of loneliness/inability to open up to anyone
I know we can’t control/rid ourselves of some of these stressors entirely, but we can learn about them and learn how to manage them.

Have goals
Continuing from the topic above, your goals should be small… take baby steps.
For example, “Today I will…”
– eat three small meals.
– get out of bed.
– make a Medical Timeline.
– write a blog.
– work from home.
– try alternative medicine.
– research/apply for financial aid.
– change my diet.
– stop drinking.
– not inflict self harm upon myself.

Seek support
Speak with your Doctor, a Counsellor, a chat site, or call a helpline.
Read a self-help novel. Reach out to family or friends.
And best of all, WordPress has one fantastic Support Group of people who are also suffering, and who WANT to speak to you! Reach out to our little community!

Which brings me to my last, and first, point:

Don’t let your illness define you.

Who are you WITHOUT the illness?
Are you a writer? A mother? A husband? A reader? A baker? An Accountant?
What are your talents?
What are your interests?
What is your favourite meal/movie/colour?
What brings you happiness?

Now, list five positive traits about yourself – yes, right now.
Here, I’ll start it off: I am Confident, Creative, Honest, Leaderly, and Lovable.

And remember, you are not alone.

Parents in the shadow of illness.

Thank you for sending through your ideas for my next post.
It was extremely hard to choose from, until I came across a response from a mother, and I knew in my heart that this was the one I had to write.
We hear stories of the teenagers and children going through Chronic Illness, Depression and Anxiety, but rarely do we hear from behind the scenes.
So, thank you to https://perfectlyimperfect05.wordpress.com/ for choosing today. I will try my best to do this topic justice.
Please take the time to read her inspirational work.


The first time I was seriously ill and hospitalised, I was about eleven or twelve. I had been complaining of stomach cramping for weeks, nausea and bloating. My parents just assumed it was a mild stomach bug. They pushed it aside. I woke up one night, though, on the floor screaming and my parents rushed me to the emergency room immediately. 
I remember the night clearly. The nurse unveiled the curtain and whispered to my parents, ‘the doctor would like to have a chat to your daughter alone’. I hated hospitals back in the days, just like any other child. They were white, gloomy and terrifying. My parents left the room, and the doctor came in. There was no time for introductions, he just cut to the chase.
“Are you being neglected by your parents?’
’
“Are you being starved?’
”
“Are you being abused physically or emotionally?’
’
My answer was obviously no, but he didn’t believe me, nor did he believe my parents. What we learned later on was that I suffered from severe Irritable Bowel Syndrome, and I was losing weight drastically because my stomach and bowels were holding onto food for long periods of time. I didn’t feel the need to eat.
And, somehow, I ended up in an Adolescent Clinic for children and teenagers who suffered from emotional or physical abuse, with a diagnosis of ‘Borderline Anorexia’. Every meeting I had with my counsellor, I was interrogated about my parents and brainwashed into believing that I was mentally ‘doing this to myself’ or that they were doing it to me. 
And after every visit, I ran back to my parents and told them everything.
Obviously, we didn’t stick around there for long.

I remember speaking to Mum about it a few years later, and asking her if she remembered, and she said it was the worst moment of her life. She couldn’t understand how someone would believe that she would want to hurt me. She said that the most hurtful thing is when someone attacks you for being a supposed bad parent.

When I had Glandular Fever, I remember my Mum feeling so helpless – my symptoms were so severe. I just lay in bed every day and night, shaking with high temperatures and there was nothing anybody could do to help me.
When I was diagnosed with Grade II Oesophagitis, they were broke just trying to keep up with my medical bills, trial medication and diet change.
Then there were the Shingles, twice, which left me bedridden once again. My neck glands had swelled to the size of golfballs, and I had excruciating nerve pain. My Dad tried to make me laugh as much as he could.
When I had my Laparoscopy last year, my body didn’t heal as quickly as it did the first time. She let me sleep in her bed for weeks, as night after night I screamed in pain. She would stay awake with me, and for each time I told her I couldn’t do this anymore, she told me that I could.

So, with a few brief memories there, you would already know that growing up, I have unfortunately always suffered from a low immunity and had DIAGNOSED illnesses. I often wondered if they regretted having me, because I seemed to cause an array of problems for them.
Late last year though, my health rapidly deteriorated. I was so sick, and off work for months at a time and not ONE specialist could find anything wrong with me. I was complaining of vertigo, not being able to eat, nausea, insomnia. I was weak at work and catching virus, after virus. My parents took me to appointment after appointment, and sat with me as every person came back and said ‘your results are all clear’.

There was one night where I cried so hard about feeling like a failure and that nobody (not even my own parents) believed me, that I gave myself one serious blood nose.
My partner was with me at the time, and there was blood all over my bed, his jumper and the floor. I held my hands over my nose, but the blood had trickled down my chin and onto the floor. I had created a small blood spilled pathway from my bed all of the way to the bathroom. It resembled a murder scene. My parents came home in the midst of me crying over a sink of running water, blood stained handprint on the mirror and basin, and my partner trying to soak up my blood from the carpet with wet paper towels. I could hear them whispering as I cried. She just won’t stop crying, he told my Mum. I don’t know what to do. My Mum has never been good with blood, so I clearly remember my father entering the bathroom with a cold flannel and he put it on the back of my neck. I (stupidly) tried to breathe through my nose, and a large blood clot flew straight up my nasal passage and into the back of my throat, making me dry retch. I (again, stupidly) opened my eyes and there in the sink was the same blood clot.
My Dad passed me tissues and patted me on the back. He left and returned with an icepack for my neck, and then went to my Mum and Jason, and I looked into the mirror. My face was covered in blood, which had dried at the corners of my lips and the tip of my nose. My Dad had never been so… hands on with me before. I felt like a baby bird with a broken wing.
I knew it was coming. They sat me down for ‘the talk’.
I had had their support for years, but today was different. I could feel it.
“You need to make lifestyle changes”, they told me.
“How do we treat something that isn’t there”
“We don’t know what to do”
“How do we help you?”
“Eat. Just please eat more. You have to eat more”
“We can’t see you like this anymore”
And just like that, they had reached their breaking point.
Their faith in me had diminished and it was only then that I realised how much suffering they had gone through and how hurt they were. They had been there for me every step of the way. They had mostly paid for every appointment, every medication, waited through every surgery, procedure and test. They had sat beside me and experienced the same sickness in the pit of my stomach when each practitioner told me they had no idea what was wrong with me. They dragged me along in shopping centres, because I was too dizzy to walk. They watched me lose seven kgs in less than a month. They watched me lose my dream job, and they saw that my usual confidence had completely disappeared. They cleaned up my blood off of the floor, and face. They drove me everywhere, and took countless days off of fulltime work to accommodate for me; whether it was an anxiety attack, an appointment, a day where I needed someone to help me at home.

I was angry with myself.
I had never once asked how they felt through this.
I had never truly appreciated their help, or guidance, until now.
I realised that we all needed to speak about everything – the symptoms, the feelings.
They were worried that they were going to have to bury me.
I had to make sure they knew this illness was serious, but that I wasn’t doing it intentionally.

And from that day forth, we were all on the same page.
We speak about everything now; every appointment, every single thing that each Specialist suggests. We discuss what medications to trial/not trial. We have an Appointment Calendar so we can work around each other. My Mum has trialled some of the natural therapies with me, and my Dad has actually networked trying to find new trial possibilities. They are continuously checking up on me during the day, and are always telling me not to stress because it ‘makes things worse’.
I inform them of every appointment, and we have received help from family and friends so that I’m not always relying on my parents. I have learnt to cope with the symptoms more independently, so on weekends, they have time to themselves and go on day trips and spend more time together alone. I’m not saying that our lives are even close to normal – because they aren’t. I am still struggling, as I know they are; having to watch me go through this. But things are much better now.
We try not to think of the future much, but if it comes up in conversation, my Dad always says, ‘You won’t be like this forever. Medicine is always growing and one day someone will be able to diagnose you or help you manage this”

I guess we have to hold onto something.

To the parents out there – I am in awe of you and forever will be.
I know now how hard it is for you to watch your child experience something and not have the ability to free them from the pain. Don’t give up hope. Talk to your children. Don’t give up on them, but most importantly, don’t lose yourself in the illness either. make time for yourself and your partner and communicate.

To the sufferers – you can sit back and write as many blogs as you like about feeling alone in your suffering and how your parents don’t understand.
Maybe you need to tell them more than once.
Some parents are in denial – not because they don’t believe you – but because they don’t want their beautiful child to have a problem, let alone a serious one.
Please, try.
And if that doesn’t work, try again.

When life doesn’t go to plan.

You could say I’ve always pushed myself to achieve the best.

I grew up knowing that I would be a writer. I wrote, I won competitions, I joined writing clubs, I was published, I studied Professional Writing for two years at University. I had a plan. Study, publish a novel, marry by 25 and have kids by 30.
But then, I graduated, and was not satisfied. I didn’t think anyone would be interested in reading my stories. I lost my writing spark, so, like any normal person, I took a temporary gap to ‘find myself’.
I worked fulltime, saved my money (which I was yet to know would be much needed in the future) and at one point, worked two jobs and studied.

I was so hard on myself for not wanting to write anymore. That was my plan, and I didn’t adjust well to change. My heart just wasn’t in it anymore.
I hated working fulltime in a fastfood outlet because I knew I was meant to achieve more than making burgers and cleaning tables (I learnt so much from working in that industry).
So, I decided to study Childcare. I worked when I was sick, I studied when I was exhausted and I still managed to fit a relationship and friends into my perfect little plan.

I was on top of the world once I started working in Childcare fulltime. I absolutely loved my job and I was furthering my studies to become a fully qualified ‘Room Leader’ (as opposed to an assistant). Children, are wonderful creatures and they filled my heart with a warmness unlike no other.

My body, though, did not adjust to the germ-infested environment of Childcare. My immunity was shockingly low, despite every vitamin and suggestion I tried. I caught every little virus these beautiful children had. I didn’t mind.

The one virus that I caught that changed everything completely, was Shingles. If you’ve had them before, you know exactly what I mean. They are unlike any pain you’ve ever felt before. And, I caught it twice (which is apparently rare). I was off work for months at a time, then I pushed myself to return and would have a few good weeks, then I’d get sick again and the cycle would repeat. It was endless. My immunity just… disappeared.

By December, I had wasted away to nothing.
I would go for days without eating, and naturally I was severely underweight. My symptoms had worsened, and I seemed to have more problems than to begin with. No doctor knew why I was so sick.
I began to suffer from this neverending vertigo and gastrointestinal problems, which forced me to quit my job entirely. Unfortunately, my studies were directly linked to my job, and with only one unit left before I graduated – I had to give that up too. I was absolutely devastated. One tiny observational unit which entitled me to be in a centre at the time.
December is mostly a blur of me being bedridden, nauseated and extremely depressed.

I blamed myself.
I blamed my body for not being able to fight back.
I pushed myself too hard.
I worked too hard.
I stressed too much.
I never took ‘breaks’ or ‘relaxed’.
To go from having a plan, to not having anything at all… it’s an extremely hard thing to adjust to… to be stuck at home, not being able to do ANYTHING.

I’m STILL adjusting.

I was the type of person who was always early rather than late, had to-do lists for every task imaginable, made timelines and had a calendar in my room, on my phone and in a diary. I had dreams and ideas of what I wanted and where I wanted to be.

My only current source of optimism is that I am still young. If I’m out sick for one or two years more, I still have time to pick up where I left off. I need to find some sort of positiveness in all of this.
I can’t sit here and cry about it anymore (and trust me, I’ve cried for hours at end, and so hard that I gave myself nosebleeds). All of that energy crying, could be spent on healing. I have to have hope, even if it means clutching at straws.
I try to steer clear from talking about my longterm future, as it makes me upset to think about.
I have given myself little goals to achieve, like writing this blog, and trying different things to get some sort of relief for my symptoms.
I still have dreams – things I never got to experience – travelling the world, publishing a novel, buying a house, eating at a 5star restaurant, sleeping in a tent… You don’t realise how much you missed, until you’re unable to do it.

I’m not so hard on myself anymore, and you shouldn’t be either.
You can’t be. It isn’t your fault you got sick, and it isn’t your fault that you are struggling to beat it or find relief.
‘Plans’ don’t always go to plan.
My body obviously needs this time off to rest.
I have no choice but to listen to it now.

What you shouldn’t say to someone who is chronically ill

10. “It’s just a bad day”
Um, no. A bad day is when you burn your toast, miss your train, get a flat tyre, spill coffee all over your white shirt, get gum on the bottom of your favourite shoe, etc.
A bad day usually lasts one day, or a few days at maximum.
This illness is not a bad day.
It’s my EVERY day.

9. “Have you tried…” // “You should try…”
I have tried 90% of the things you are just about to suggest.
I REALLY appreciate the thought, but the only thing I will be trying will be anything my Doctor or Specialist prescribes me.
I don’t want to try any herbal remedies that have been passed down generations and help you with your Gastro bug.
If you have not gone through this, then please, please don’t recommend that I try anything. I know what my body can tolerate. Just let me handle that.
Maybe ask me what I am trialling/what is next?

8. “Come out with me and you’ll feel so much better”
Um, despite what you believe, that is a no.
Again, I appreciate the thought of you trying to distract me, but I am sick.
Do you want to go out when you have gastro? or the stomach flu?
Um, no.
If I go out with you, I want to feel good. I want to be able to chat to you over a lovely meal, have a laugh and enjoy myself. I don’t want to have to link arms with you because I’m extremely dizzy, and unbalanced. I don’t want to feel nausea half way through our talk and run to a bathroom.
It’s a little hard when my symptoms are this severe.
When I feel better, we can go on a trip around the world.
But for the time being, how about you come around for a tea, or a visit? I would really appreciate it.

7. “At least you don’t have…”
Is that statement meant to make anyone feel better?
Am I meant to consider myself lucky?
Not sure about my other sufferers out there, but that statement makes me feel worse because I don’t know what is attacking my body.
I would rather have a diagnosis, than be in the dark about it.

6. “You need to stop being so negative”
I am most likely negative BECAUSE of the illness?
When something consumes you for so long, you have every right to have negative thoughts/moments. You are literally housebound, jobless, depressed and ill every single day. Would YOU be happy every day?
I could force myself to think positively every single moment of every day, but it doesn’t make the illness disappear, understand?

5. “You got this because…”
Most likely because I overworked myself, had a weak immune system and worked in a field surrounded by germs – but then again, I don’t even know why.
NOT because I don’t exercise frequently.
NOT because I have normal arguments with my partner.
NOT because I chose to work instead of going out and partying.
NOT because I don’t eat healthy (btw I do eat healthy)
Please, save your breath on trying to play Doctor and make me feel shittier than I already do. You have no idea why or how I got this, and we’d all appreciate it if you just kept your opinions to yourself.

4. “So, what’s wrong again?” // “You’re still sick?”
If you weren’t listening the first time around, I’m not wasting my breath telling you again. I don’t have the time, patience or energy.
And yes, I’m still sick. You would probably know that if you listened the first time I told you, or if you had more of an understanding of Chronic Illnesses.
There’s this thing called Google – heard of it?
Do some research.

3. “You’re just exaggerating/making excuses/want attention”
If I had a dollar for every time I have heard this, I would be rich.
I also love how most of the time, this statement is used behind my back.
Why would someone leave their dream job, stop studying, stop driving, spend all of their time at specialist appointments, feed my body countless trial drugs, and create pain and nausea and dizziness?
Walk a mile in our shoes, please, take them.
Get back to me in thirty minutes and tell me how you feel (because you won’t last any longer than that, I assure you).
I don’t know why someone would exaggerate symptoms like this just for attention.
My illness is not an EXCUSE. It’s an illness. Full stop.
Yeah, I want attention. It’s called SUPPORT and ANSWERS.
Maybe instead of spreading negative energy, you should check in on me once in a while and show your caring side.

2. “But, you don’t look sick”
Yes, I might not look sick today, but it doesn’t mean that I don’t feel sick.
I might be very good at hiding my symptoms (on the not-so-bad days).
You can’t see nausea or vertigo.
You can’t see digestive problems or abdominal cramping.
But I can assure you that I feel it.

1. “It’s all in your head” (my all-time favourite)
The only thing I can say to the people who have used this line before is;

Yes, it is all in my head.

I used to feel so hurt when someone would say that to me, but then one of my specialists told me that, it really IS in my head. It stems from the brain, which controls our entire body.
It might be my brain, it might be an organ, but whatever it is; IT ISN’T DOING WHAT IT IS MEANT TO BE DOING.
So, do not feel ashamed or upset, and most certainly do not second guess yourself if someone ever says this to you.
It really IS all in your head (hehe).

Things you CAN do for someone with an invisible illness:
– Ask how they are feeling and begin to recognise their symptoms.
Ask questions if you want to know more.

– If you want to buy a gift, ask if there is anything they NEED.
We don’t get out much. Sometimes we need little things like toothpaste or gum or milk.

– Visit them!
It’ll usually have to be a short visit, because we need our rest, but I want to hear about who you are dating, what you ate yesterday, how studying is going etc etc.


– Be supportive! There’s nothing worse than having to face all of this alone. Just tell us you are there to listen – most of the time we don’t even want a response. We just need to get our feelings out…