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 : your worst critic.

If dealing with the symptoms of Chronic Illness wasn’t enough, we also have to deal with the physical changes in our bodies, and having to face them mentally.
With detiorated health and immunity, comes physical changes that we have no control over. For example, I have lost weight at a ridiculously fast rate so I’m currently all skin and bones, my hair is falling out in clumps, my skin has turned to sandpaper and all of the colour has drawn from my face and turned me into a ghost. I look in the mirror and see someone who is sick, but I honestly cannot see the change in my weight. Others, can and they aren’t afraid to point out that I have a ‘problem’. They aren’t afraid to say,
‘wow you look shocking today’
‘Have you seen your um… face?’
‘What is happening with your hair?!’
‘You’ve lost SO MUCH WEIGHT’

I know that people aren’t doing this intentionally. They are stating facts, and probably don’t really know what else to say. So, um, maybe just don’t say anything at all?
Because yes, it bothers me, and I have no control over it.

If you read my post from earlier on in the week – Parents in the Shadow of Illness – you would have read that I was sent to an Adolescent Clinic in my earlier years. Sufferers of Anorexia, Bulimia and Body Dysmorphia were sent to this clinic too, so I was exposed (at a very young age) to this disease upclose and personal.
I didn’t know exactly how each of these teenagers felt, but what I understood from my time there was that they looked in the mirror and saw a completely different image to what was actually reflecting them.
I saw them hide behind their oversized jumpers and baggy tracksuit pants, and then further behind a trench-coat, because they weren’t happy with themselves.

I, myself, had been diagnosed with ‘Borderline Anorexia’. I remember asking myself, what the hell is the difference between borderline and straight out anorexic? We’re all underweight.
Why further break us down into smaller stereotyped categories?
Someone then told me that my illness was causing me to lose weight, and these teenagers were ‘doing it to themselves’.
No. It is not something that you ‘do to yourself’.
It’s a mental illness, or some people like me had no control over it as it was an alternate issue causing the weight-loss. It didn’t matter because it led to the same thing in the end; being underweight, unhealthy and judged.

When it comes to Body Image in general, why is it that we always believe our worst reviews? We can never accept a compliment, and when someone has the nerve to criticise our appearance, we let that cloud our mind and eat away at our thoughts.
There is always something, with EVERYONE, regardless of gender or social status.

Why do we become obsessed with wanting to be like someone else? As skinny as the celebrities, as tall as the models on runways, as attractive as that guy/girl you just saw on the train? (and here’s another thing, don’t gender discriminate. Guys suffer too). You’re looking at one girl, wishing you had her waist. She’s looking at another girl, wishing she had her breasts. That girl is looking at a guy, wishing she had his hair. And that guy is looking at another guy, wishing he had his body. It’s an endless cycle.

Isn’t there something beautiful in being DIFFERENT?
Imagine a world where we all looked exactly the same – that there was a median for men and women. Yes, there would be nothing to compare ourselves to, and no individuality! We would all blend in and there is no fun in that, is there?

There’s always something to complain about.
We wish our teeth were brighter.
We wish our thighs were skinnier.
We wish we had less spots.
We wish we were taller, shorter.
We wish we were curvier.
We want smaller breasts.
We want larger breasts.
We want less hair, more hair.
We want to be darker.
We want ‘natural’ skin, yet we use more makeup.
We want to look ‘beautiful’. What is beautiful, really?

I think that the true definition of ‘beautiful’ is being able to completely accept yourself with all of your flaws and imperfections.
To be able to look in the mirror, and PAST all of the negativity, and be proud of who we are, where we come from.
Sure, it’s great if you want to work on yourself and create a better you, but don’t interpret that as losing yourself in creating someone else.

As I said above, this illness has made my own personal view of my body and beauty, pretty harsh. Sure, I have the occasional day once every few months where I have a family event, slap on some make up and try to look ‘pretty’, but that’s rare and it doesn’t mean that I feel good on the inside.
I still cry every day because I don’t look the same as I used to. I cry because I feel unattractive. I cry because I can’t fit into my favourite clothes anymore. I cry because my body is working against me.

I am like you, my worst critic.

So here I am, flaws and all, sharing with you that it is PERFECTLY OKAY to not be someone else’s definition of perfect.
That we are beautiful with our illness, and without.

We need to stop hating ourselves, and start loving ourselves.
You, are not alone X