Body Image

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.

Common Chronic Illness Misconceptions.

#1 Only the old get sick:
Illness does not discriminate.
We are fair game.

#2 Looks reflect feelings:
If you bumped into me in the street, you would not think that I was suffering.
I may appear to be okay, maybe a little tired, but on the inside my muscles are aching, my head is spinning, my stomach is churning.
What needs to be known is that I can leave my house looking decent, but feeling absolutely terrible.

#3 Stress reduction techniques cure illness (ie exercise, meditation, yoga):
When people hear that you are unwell, they assume that the things that usually provide average people with a better wellbeing, will help you. This includes Exercise, Meditation, Diet Change, Juice Cleanse & Detox, Yoga etc.
This is incorrect. I encourage the Chronically Ill to try these, as they may provide a temporary relief for symptoms, but they are not a cure!

#4 Being home all day is a dream lifestyle:
The first few weeks of being stuck at home are okay. They are hard to adjust to, but okay.
When you get to the two, six, eight month and year marks; being stuck at home every day is not as great as you think.
Why do people think we are at home, jumping for joy, throwing parties?
I’m not sure about you, but I’m usually crouched over the toilet, riddled in pain, having anxiety attacks, crawling on the floor, huddled in foetal position. I am bored by my daily routine of doing very little, as I am only able to do very little.

#5 If the illness cannot be formally diagnosed, then it doesn’t exist:
The symptoms I feel are very much real.
Just because it is not coming up in tests, does not mean that it does not exist.
People just want a title, as it helps them validate it.
Don’t feel like you owe anyone a validation.
Trust your instincts, as you know your body better than anyone else.

#6 We are ill because we are depressed:
This is such an offensive statement.
I have depression BECAUSE I am ill.

#7 We cannot date when we are ill:
We may not be able to go out to fancy restaurants or to bars/clubs, and be as active as we once were, but there are ways around this, and most importantly there are people out there who are willing to do these things with us. You just have to find them. Do not think that you will be alone forever, or that you won’t find anyone because you cannot meet people in a social environment.

#8 We are doing this to ourselves:
I’m not entirely sure how people come to this conclusion.
Maybe because they are unsure of how to accept the illness themselves.
It is again really offensive to imply that we are purposely hurting ourselves, or lying about being this ill.
I can assure you that we are not doing this to ourselves.
What would we have to gain from it?
Our lives are pretty messy, and our bodies non-negotiable.

#9 Having good days means that we are cured:
When an important occasion arises, we learn to put up with the symptoms of our illness, including terrible pain, so we can try to enjoy what we’re doing, especially being in the company of others. As the days past, we grow a tiny bit more accustomed to the symptoms. So then you ask, “Well why can’t you put up with it every day?”
We are exhausted. We cannot put on a brave face every day. We are entitled to rest, or else we will go backwards in our health. We are the ones who suffer behind closed doors.
One should not assume that a person who is laughing is a person who is pain-free or feeling “good”.

#10 Medication fixes everything:
Just because I am being trialled on medication, or have been given medication for a diagnosed medical condition, does not mean that I am cured. Medication assists in keep us on track and relieving symptoms, but it again is not a cure for our illnesses.
I also believe that Medication helps when you have a formal diagnosis. If you are in limbo, like I, and are being trialled on medication after medication, you can be left feeling more awful than you did before. People do not understand this. They just assume that “medicine fixes everything”.

#11 We are lazy because we are on Government Allowance:
I used to work a fulltime job working overtime, and ten days in a row at a time.
I then moved to Childcare and worked and studied fulltime, earning a generous pay packet weekly.
I do not enjoy being on Government Allowance.
Just because our bodies are weak and we are unable to do certain things, does not mean that we are lazy and don’t want to. It is not as easy as telling someone to get up and work.
I physically cannot do it at the moment, but that does not mean that one day I won’t be able to.
I, alongside many others, are striving to achieve that.

#12 Eating more will help you put on weight:
Firstly, if we are talking about me, you have to get my stomach to work!
Being constantly reminded of your weight loss, and being pushed to eat food like a garbage disposal is not the way to approach the situation. Eat as much as you can. Eat what you can. You know your body better than anyone else, and you are in full control of retraining it. The weight will come in time.

 If only future people will become educated about what life is like for the chronically ill, so that some day soon, all above will be seen as uncommon misconceptions and we will be better supported in our struggle!

This is a followup to my first post “What you shouldn’t say to someone who is chronically ill. Take a peek if you get a chance. I hope you like it!

The Bible of Blogs.

The end of Mental Health Awareness Month is almost here, and so many of you have been asking me the question, “can you recommend a blog for me to follow for sufferers of…?”
So, this blog is all about my Bible Of Blogs for Sufferers of Mental, Chronic or Invisible Illnesses.

I encourage you to do the same,
as I am sure we have all come across different blogs that we favour.

In light of doing this, we will be:
– spreading awareness of our illnesses
– guiding new and old bloggers to the right people for help, guidance and understanding.
– uniting to help each other’s pages grow

I have spent a few days, in between illness, searching through all close-to-600 followers. I also had a Followers Malfunction, where WordPress told me I was not following anyone/then suddenly was following/then wasn’t again, so MY APOLOGIES for any notifications you may have received!

I have read, and read, and read your posts.
Let me tell you that what I came across made me laugh, brought me to tears, and left me with that “this person understands” feeling.
I wish I could put links to all of your blogs here, but as that is near impossible, I have chosen as many as my brain would allow me to for today.

I hope this is somewhat of a help.
If you feel up to it, create a list of your own.
We can really make a difference and spread awareness if we unite.

C, x.

THE BIBLE OF BLOGS:
Mine of course! (hehe)

See the Follow Button up above!

CHRONIC ILLNESS/INVISIBLE ILLNESSES:
https://undiagnosedwarrior.wordpress.com
https://nosuperhero.wordpress.com
Nikki, and Heather, both provide blog entries about their rollercoaster ride with their Chronic Illnesses. They are both more than happy to reach out to those suffering, and provide help where they can.

https://beyondtheflow.wordpress.com
Rowena is an all-rounder. She has knowledge in many topics/areas, and is also a sufferer of Chronic Illness. She is a mother to children suffering with Chronic Illness also. She definitely gives a great outlook on suffering from a parental point of view.

itspotsable.wordpress.com
https://chronicallysarahlynn.wordpress.com
https://livingasapotsie.wordpress.com
Rebekah, and Sarah, run blogs about their journey through living with POTS. Rachel, is newly diagnosed, and has just begun writing about her journey. All three writers are extremely talented and have wonderful insight into symptoms, relief techniques and what it is like living with Chronic Illness.

https://rhosynmd.wordpress.com/
Rhosyn blog writes entries about the ups and downs and everything in between when dealing with Chronic Fatigue Syndrome.

http://megaspecial.me
Vix writes about her journey living with Multiple Sclerosis. This woman’s drive for life, whilst suffering every single day, is incredibly inspirational and definitely worth a read.

https://gutttedgirl.wordpress.com/
Rebecca has a blog dedicated to her journey through living with Irritable Bowel Syndrome (IBS). Incredibly insightful and easily relatable blog for fellow sufferers out there!

https://thegloriousgut.wordpress.com/
http://thankheavens.com.au/
Really simple, yummy recipes for those suffering from IBS, or who are struggling for Gluten Free meal ideas!

http://carrotsinmycarryon.com
Kate’s posts are written about her ‘food issues’ and struggles with a Borderline Eating Disorder. She will make you laugh, and cry. She is extremely down-to-earth and honest about her day-to-day struggles.


DEPRESSION&ANXIETY:
wemustbebroken.com
Paul runs a fantastic blog about Mental Health where you can submit pieces of your own, read through poetic stories and even reach out to a community of people who are suffering all the same.

https://zoerising.wordpress.com/
Zoe writes an inspiring blog about a wide range of topics which include her struggles in dealing with; gender, race, politics, love, abuse and identity.

http://dimdaze.com
Don writes a very honest blog about his days suffering from Bipolar, Anxiety and Depression. He is absolutely lovely and is willing to offer his time to chat to fellow sufferers.


TO PREOCCUPY THOUGHTS:
https://dickyjloweman.wordpress.com/
https://thecoryclark.wordpress.com/
These extremely talented men write the most beautiful poetry you will ever read.
I promise, if you need a distraction, their pages are definitely it.

The Positivity Fairytale.

I hear the phrase “you just have to stay positive” or “be more positive” on a daily basis, and more than once.
Don’t get me wrong, I’m all for positivity and having hope in management, recovery and learning to love myself and live with this illness. I understand that it works for a lot of people.

I don’t believe, though, that it is as simple as just “thinking positively” and all of the problems suddenly disappear.
You may disagree.
I know this topic will spark some controversy…
But, there is a massive difference between staying positive, and being open and honest about Chronic Illness.

Lets face it.
Chronic Illness is ugly.
It brings a whirlwind of symptoms that attack your body, dramatic life changes, as well as emotional and mental changes for yourself and those around you.
I am yet to come across a person who is struck down with a mild flu or Gastro Virus, and is running around the room being thankful for getting sick and having a few days of low immunity.
So, why would you think that I would be jumping for joy every day with my illness? How am I any different to you? Do you think that I wanted any of this? How is it possible to remain positive about it every moment of the day?

It is a struggle, and I see no shame in being honest about it. I encourage you to write honest posts and express yourself freely about your feelings in regards to your illness and suffering.
Being honest about your feelings will help you accept the illness. It helps others understand, and it connects you to a community of sufferers.
You should not be ashamed to share your true emotions. In order to promote awareness for our diseases, we must talk about our bad experiences, as well as the good.
I have bad days.
I have really bad days.
Occasionally, I have good days.
I am not afraid to write or speak about them, because once my feelings are out in front of me, I can move forward. Writing is a release. Without it, I would be in denial. Things for me will never be the same. I may never have the life I did before, and I may never have a formal diagnosis BUT what I do have is a chance to have a great story.

Telling someone to “stay positive” during this rollercoaster period, is not as great advice as you would think.
Does positivity miraculously cure my illness?

No.

Friends and family are overly focused on being positive. This is not a bad thing, but it is definitely a lot of pressure on the suffering to feel happy and content with their current situation.
Chronic Illness is not a walk in the park, and the world needs to accept that.
It also isn’t all about the symptoms. It is about how our families are effected, how our lives are effected, acceptance of the change and our new bodies.

How is someone meant to have positive thoughts when we receive insulting commentary like, “how are you exhausted when you don’t do anything all day?”

I used to be what society considers to be normal – going on roadtrips, shopping until my legs ached, working double shifts, going for walks, seeing friends, driving the streets…
Now I can barely walk around a shopping centre or stand for long enough to make a cup of tea…
But let me tell you something.
When I DO manage to achieve these things that you consider tiny, it takes a lot out of me. I try and do little things every day, and when I do, I am incredibly proud of myself.

I didn’t ask for any of this.
I don’t enjoy being on crappy Government payments, or the days spent in Doctor’s Clinics. I don’t enjoy being ill every day, and missing out on living.
I am judged.
I am judged for being on Government Payment.
I am judged for spending my days in appointments, with no answers.
I am judged for trying, despite having no answers.
I am judged for being ill.
I am judged for not being able to be the way you would expect me to be.

Being positive all of the time when dealing with illness, and especially an Invisible Chronic Illness, is unrealistic. In fact, being excessively upbeat is often linked with being in denial. Keeping an optimistic outlook can be incredibly tough, because NEWFLASH, chronic illness is terrifying. The uncertainty is terrifying and forces us to deal with a lack of control, surrendering to Doctors, trusting random people with our bodies, and the sad reality that life is finite.

This post is not me telling you to be negative every day and give up. What I recommend is finding a balance between the feelings of despair, and feelings of optimism. Do the best that you can to control what you are able to – decisions about which Specialists to see, what treatments you wish to try, a gameplan of your own, small goals each day. Find little things that you are thankful for, rather than constant positivity.
And most importantly, open up to family or friends who can tolerate hearing about ALL kinds of feelings. Do not put on a facade around people, or the blogging community. It is naive to think that we will hear you at your best all of the time.

You are allowed to say that this isn’t fair, that life is now unbearable, that you are confused, lost and terrified. And, if nobody wants to listen, I will listen. Because, I know what all of this feels like… The good and the bad. I won’t tell you to “stay positive”, but I will tell you to stay.

You have a story to tell… a novel of life, love, loss, struggle, acceptance and change.
I encourage you to tell your story; read it aloud, as I will mine.
Real life is no fairytale.

Defining “normal”

I have recently come across many posts where sufferers write about how they long to be “normal”. In a few of my posts, and most recently, I too speak of that longing for a norm.
I guess what I truly long for is familiarity, because when I fell ill I also felt like I lost a huge chunk of myself to the illness.
You may feel like you are not a whole person anymore. You might be embarrassed or ashamed that you have an illness. It happened to me, as I’m sure it has happened to you. It isn’t your fault – it’s inevitable.
It leaves you wishing to be normal, but when you think about it, what really is “normal”?

Google defines normal as, ”conforming to a standard; usual, typical, or expected”.

Is there only one standard that Google, and society, is referring to?
What do YOU think of when I say normal?
Is normal being able to be active?
To have the freedom to study, travel and work?
Is it being illness free, or having an illness?
Agreeing with others, or voicing opinion?
To be heterosexual, transgender, gay or lesbian?
Is normal being married, single, in an open relationship?
To do the things we were once accustomed to doing?
Or do we each create our own idea of what is an acceptable norm, and what is unacceptable?

I know when in school, there’s the longing to be popular.
In cases of Body Image, people long to be skinnier. You rarely hear of someone saying, I wish I was heavier (although, I’m apart of that rarity as I’m sitting here right now wishing my body would put on weight rather than lose).
Perhaps in our case (the chronically ill), “normal” means “healthier” or “happier”.
I know that when I say that I want to be normal again, I really just want my health to return, and that familiarity I used to have every day.

I’m still finding it hard to adjust to this illness and how it has changed my life so quickly. I am unable to work, drive, and struggle to be independant like I used to. The illness has restricted me, and on some days it leaves me bedridden. I’m struggling to accept the fact that I am actually this sick. Sometimes I wake up and think that I can go back to work with the kids, or hop in my car to go for a drive… That obviously isn’t the case anymore.
Instead of accepting the fact that I have a new norm, I waste time worrying over the wrong steps I took to possibly get to this place, hating myself and I guess, trying to blame someone or something for changing what I was used to.
Maybe that’s the harsh reality of it all.
Maybe we are all meant to be different.
Maybe we are too afraid to accept change in ourselves and our lives.
Maybe we don’t like the fact that the change can be a disadvantage.

Maybe we are too proud to admit that we as humans, have flaws.

Maybe there really is no such thing as “normal”.

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?

Thoughts of an Insomniac.

I can’t fight anymore.
You have to.

It’s too hard.
In hardship comes strength.

This illness is too big for me.
Everything is too big; you are so little.

This isn’t fair.
I know, I know.

Will I ever work fulltime?
Who wants to work fulltime anyway?

Will I ever go back to Childcare?
You can babysit instead.

Will I ever finish my course?
We can try and explain the situation.

What happens when the Government cut me off?
We will fight them.

Am I classified as Disabled now?
It doesn’t change who you are.

Will I be able to eat at a restaurant?
We can bring a takeaway container; no waste.

Will I ever go on a date again?
We will be creative.

I am afraid.
I will hold your hand through this.

Will I ever get married?
Why can’t you?

Will I ever have children?
I think your reproductive organs work.

Will the nausea ever go away?
We will try everything.

Are there others like me, out there?
We will find them.

But I searched…
We try again.

There is no positivity behind this disease.
We will spread awareness.

There are too many bad days.
There are some good.

 I am too small.
You are small, but strong.

 I don’t want a feeding tube.
We won’t get one.

 I want to live painfree.
We will manage this.

 I can’t sleep.
Please put the phone away.

 Will I ever walk alone again?
We will train Brain somehow.

 I am so dizzy.
You can hold onto someone.

 Will I ever see the world?
We will travel one day.

 I can’t do this.
You can.

 I hate myself.
You are still beautiful.

 I want to leave.
You are upset, overwhelmed.

 How will I leave?
We are not doing anything.

 Will they miss me?
We aren’t going anywhere.

 Will they come to my funeral?
We haven’t died.

 Will someone try to change my mind?
You have a family who love you.

 Will they feel guilty for not being here/supporting me?
We don’t need them.

 I feel so alone.
You have a few friends, a family…

 Everyone is moving.
We are resting.

I hate this incurable disease.
I know.

 I hate you, stomach.
I know.

Then let me go, please let me go.
No, we’re not finished here yet.

 I can’t fight anymore.
You have to.

 

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.

Not as inspirational as you thought.

Another doctors appointment where I come home in tears.
My symptoms have worsened this week.
I am not Superwoman.
I tried to explain it to him.
I am too dizzy to walk, my stomach won’t digest food, my nausea is taking over my day, my vision is deteriorating, my neck muscles are throbbing and throbbing, and never stop throbbing. I am growing weaker, and weaker by the day.
This thing has ruined my life, and I will not let you sit there in silence and give me that sad ‘it’s-all-in-your-mind’ look. People don’t just get these symptoms for it to be diagnosed as NOTHING.
Everyone is moving, and I have stopped.
But I can see them. I can see their judgemental stares.

I spoke so quickly, my sentences were coming out as word vomit. I brought out my little pre-written timeline, and I showed him all of the referrals I wanted next.
I gave my doctor a gameplan.
I told him what we do next.
After the Gastric Emptying Test on Thursday, I want more blood work done.
I want an MRI for my neck.
I want my goddamn life back.
I want my body back.
I want my energy back.

I want someone to believe me.

His stupid facial expression felt like a hundred arrows had just been shot into my heart at once. It felt like I had been lit me on fire, and I could feel every ounce of my skin burning.
I felt so naked, so exposed.
And inside of me, whirling in the pit of my stomach, It held back my hair because it could sense vulnerability, and It chuckled in my ear; it’s all in your head.
“Anti-depressants,” was the only word he said, that cut me from my thoughts.
These were his only words in my half an hour appointment.
BECAUSE ANTI-DEPRESSANTS JUST MIRACULOUSLY FIX EVERYTHING, DON’T THEY? I am depressed BECAUSE of the illness terrorising my body.
But hey, anti-depressants will definitely get me out of here so you don’t have to deal with me anymore.

A few of you have asked my where I see myself in the future, and if I have any dreams? Will I go back to childcare? Do I want a family? Do I want children of my own? Do I want to travel?

On nights like this, I imagine my future self in a psych ward, being pumped with medication, my mind corrupted by this disease, my visitor’s log empty.
I don’t have a family, I don’t have friends, I don’t have Love, I don’t have hope, I don’t have control.

Sometimes, I don’t even see that.
I see dirt, rotting flowers and complete darkness.

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.