Chronic Illness Awareness

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

The Many Faces Of Chronic Illness.

Hi readers,

This is a must read.

I apologise for my recent absence.
Illness Army is incredibly popular, and I have only made time to go through each of your emails and publish your stories instead of my own.
Ihave also had a lot going on in regards to my health, a few rough flareups and became lost in my dark thoughts, symptoms and busy agenda.

Even though I have been absent on WordPress, I have not been so absent on Social Media.
I have received an influx of personal messages lately reading the following:
You are looking great lately. You must be feeling better,”
and,
I have seen that you have been getting out more lately. You must feel fine!”

Incredible.
Photos begin circling of my face painted with a little bit of makeup, hair straightened, sitting in a public place and suddenly everyone remembers that I am still alive, and I am deemed as cured/better.

Firstly, I am not cured.
I don’t know how to respond to the “feeling better” statement.
I don’t know why society assumes that someone that appears to look healthy, is healthy.
If anything, I am adjusting better to my new norm.

Secondly, yes I might be out – I can assure you it was for an hour, no more.
Do you know how much strength and additional effort it takes a Chronically Ill sufferer to get up and leave the house for ‘events’?
I don’t know about you, but I personally have to be dragged out kicking and screaming. Every inch of my body aches, I am trying to hold in my wanting to vomit and the last thing I want to do is be in public being stared at because ‘the normal looking girl is walking too slow’.

I don’t know how to feel when I receive these personal messages.
Do I take it as a compliment, with pride?
Or do I take it as an insult? As people come to me after seeing a photo or a post, telling me that I look great, and then 101 question me as to why I am still not at work, why I am still in appointments, why I am still unable to drive and why I missed our lunch date.
I am continuously spoken to like they think that at the snap of my fingers I can just turn on the Health Button. It is strongly ringing in my head as an insult.

It’s always one extreme or the other.
I am either deemed well enough to run a marathon, or I must sit in my house alone all day because the symptoms are making me miserable.

There is never an inbetween.
People don’t understand that we can feel strong enough to go out some days, but still come home sick/still be sick>

Are people naive enough to think that I’m going to happily post a photo of myself when I have acne all over my face, I’ve been vomiting my organs out and I am so pale that I could be mistaken for Casper the Ghost?
Ah no, and I am certainly not going to post a Facebook status about how I contemplated killing myself four times this week, either.

I, like you, choose to only publicise my achievements; the days that are slightly more bearable than others, and the photos that make me look half-decent. Why? Because I’m human.

Forgive me if I, too, want one day where I look ‘normal’, ‘beautiful’, ‘unpained’.

Well, maybe this is the problem?
Maybe sufferers of Chronic Illness are feeling pressured to be something we are not; healthy.
Maybe this is what needs to change; I/we need to make our statements raw, and our photos as honest and natural as they can be, in order for everyone to stop and take notice of the bigger picture.

So, I have taken a ‘selfie’ every day for the past thirty days, to show you that appearances are not everything.
I am not “pretty” every day and I don’t even care.
But, mostly, I want you to see the fluctuation.
I want you to see the face behind the “makeup days”.
I want to share that there are MANY faces of Chronic Illness that aren’t often publicised.
I don’t get to pick and choose what days I am ill and unable to leave my house. I don’t get to pick and choose which events I have to cancel, or when my flareups decide to make place or for how long they last. You cannot make a solid judgement from the photos; you can only make ASSUMPTIONS.

And queue the non-sick raising their hands, asking, “but you were able to go out some days so why can’t you just push yourself to go out EVERY day?”

Some symptom days are just HARSHER than others.
The point is, I did not wake up CURED.
I felt sick the entire time, but some on some of the days the symptoms were just easier to manage than the others.

I have days where I walk down the street and you would not think that I was suffering with severe pain or nausea twenty-four hours a day… and then there are days where I look pale and pained; there are days when I run to the toilet, I can’t speak due to nausea and I’m curled up in a ball on the floor crying.

I want you to know that it is OKAY to have days where you don’t wear makeup, don’t feel like going out to see a friend, your hair looks frizzy, your skin looks like a dot-to-dot puzzle. It’s also okay to get a day where you feel well enough to get dressed up and do things, and to still come home at the end of the night being sick. It’s OKAY.

Take a look at my photos, and before you jump to drastic conclusions, assuming that I have magically overcome my illness overnight – let me tell you that I haven’t.

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I’ll let you in on a little secret;
I was sick every single day in each of these photos…

But, you wouldn’t know it by looking at me.

C xo

instagram // facebook

Illness Army: “A New Beginning”

Another must read from the ever-so-sweet Joshua.
I am lucky to call Josh a friend.
He runs the blog http://musicismystory.wordpress.com and is an incredibly talented lyricist.
Joshua spreads hope for other sufferers of Cerebral Palsy, Depression, Anxiety and Body Image.
His story shared today, will leave you with a warmth in your heart and an overwhelming feeling of hope for love.

So, it’s been two months since I’ve written anything – not a song, poem, or blog post of any merit or substance. Why’s that important? Well, let’s just say that I’m not doing what I should be: myself.

I mean that in an expressive and artistic way, and the reason why is because I’m happy – I’m in love. My creative nature is birthed from heartache, pain, loss, fear. I don’t have those feelings now, and I have a girl in my life that accepts me for who I am.

She is of course in a different country – Norway to be exact. Sure, I know what you’re thinking: it’s limiting, too far, or not possible. We’ve talked about it countless times, and we both come to the same conclusion each time: we both give each other something that no one else ever has. Despite being 3,587 miles(5,772 kilometers) away from her, I’ve never felt closer to anyone emotionally and mentally in my life.

Is there someone here for me in New York? Sure – somewhere – but that’s not the point. Over the years, I’ve consistently fallen for girls that I’d never have a chance with if my life depended on it. ‘Just kill me now.’ I’d say.’ This ain’t gonna happen.’

I always wanted what I couldn’t have – including a “normal” body due to my disabilty – and the odds have always been against me since birth. However, my biggest struggle became the catalyst for how I’ve accomplished anything in my life. I can do anything you can – I just do it differently – I’ve obtained everything in the opposite fashion and I applied that to relationships, too.

And why not? Why shouldn’t it be different? I’m never gonna have a regular life – and that’s okay. Conventionality can bite me. And the thing is, this girl that I love is different. She’s human, she’s reflective on what she’s done – what she sees – and she acknowledges that – to me anyway and I her. That’s what’s important. We acknowledge one another.

Those other girls who I’d never be with in a million years liked me for one of two reasons: I knew what to say in the face of their adversity, and they had boyfriends they didn’t like. A lot of people are superficial, apathetic, and worrisome of their image if they’re with certain people. I’m that certain person to others when it comes to relationships.

I couldn’t give less of a shit now if I’m not enough for you. I’ve “tried” the online dating thing and it’s the same bullshit. Everyone’s afraid of saying what they want, and when someone is honest in what they want, the system designed to “find your perfect match” – based on nonsense – gives you a big fat middle finger.

Online dating prays on the fears of lonely people who’ve been rejected by society only to reject the want they desperately need: love. You can’t live without it. It’ll kill you before you give it a chance at times. I’ve been dead up until I found this beautiful girl named Anette. The love she’s given me and the love I have for her have saved me from eternal somberness and stifling heartbreak.

She’s proved to me that I’m loveable, I’m “good enough” – even though she’d say great – and most importantly that I’m capable of everything I’m afraid of. I’m so grateful for her and she’ll be visiting me in June. It’ll be the first time that we’ll be at fingertips length.

I can’t wait to meet you, Anette. Thank you for making me see the beauty that is life and for showing me what love’s about: empowerment and encouragement of one another through light and dark times.

I love you.

If you would like to submit your story of hope during illness, check out our Submissions Guidelines Page. I look forward to hearing from you.

Will You Be My Valentine?

When it comes to Valentines Day,
you are usually one of two people:

The person who sits in a slump,
hidden from social media all day,
because you are single and you don’t want to be inundated with hundreds of Facebook posts from other people gloating about their relationships, overpriced flowers and gifts;

or you are that other person who is on Facebook gloating about your relationship, overpriced flowers and gifts.

Valentines Day is about being thankful for Love,
and spreading kindness…

I’M the person who thinks that this should be done EVERY day.

Love for your friends, family, those who have been supportive to you along your journey, and your partner…

It is also about loving yourself,

so,

my Valentines Day gift to you today is…
one Extra Special Spoon to use on doing something that makes YOU happy,
because YOU deserve it!

Extra Spoons are rare so use it wisely!

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If you are having a really awful symptom day,
and/or are spending Valentines Day alone like me;
don’t be disheartened.

Know that I am thinking of you,
and most importantly,
that you ARE loved.

C, xo

Learning From Your Illness.

I used to think of Chronic Illness as a burden.

It was a big life change, and not the breezy skip down the yellow brick road, or the ‘I found a Prince Charming’ ending.

I used to see Chronic Illness as a thief; one that stole more from me than your average burglar.
It stole things from me that could not be easily replaced – my independence, my yearn for life, my happiness, my feelings, my body and health.

Everything was suddenly different.

To sum it up, Chronic Illness is shitty.
It is the shittiest thing that someone can have happen to them, and yes, it’s lifechanging and downright devastating. If this were a ‘choose your own adventure story’ I would not be choosing the Chronic Illness path by choice. I mean, who WANTS to feel this sick every single day?

As I approach my one year of illness, and since being diagnosed with Gastroparesis, I can’t help but reflect. SO much has happened in the past year, and it seems like just yesterday that my world turned upside down. I can tell you that I did not think I’d live to see this day. A year of hardship; medications, unemployment, Depression, trials and appointments.
This is only one year of me being sick, so I find it hard to imagine how other sufferers of decades feel.
I could speak about the shitty stuff endlessly, but today I want to chat about something different;

what good has come from being ill?

What have I learnt?

I have grown a greater appreciation for sufferers and for their families.
My blog has opened me up, and early, to sufferers worldwide. I became overwhelmed; thankful that I was not alone, but equally sad and afraid for these people. I didn’t even know these people, yet I wanted to save all of them; fix all of them.
I knew exactly what it was like as an individual and for families.
I felt the disheartened stare from parents and loved ones; the stare that was made up of partial disappointment, loss and uncertainty. The person they had raised or grown up with, was not able to be easily fixed.
A piece of my heart lies with each of you. I know how tough it is, but we (the sufferers) thank the heavens each day that we have you in our lives.
I am thankful to have YOU in MY life.

To which I have learnt how to love greater than I ever have before.
My heart literally tripled in size.
I love everyone, and I want everyone to be loved.
If I could hand out hearts and spoons all over the world, I would.
I have found myself being more emotional as a result of being sick; crying over romantic movies, and when someone else is harmed. I would give my last dollar to help someone else if they desperately needed it, knowing it might set me back a few appointments of my own.

I am incredibly appreciative of my health.
You grow very, very of being sick every single day, and you actually find yourself longing for the simple common flu or stomach bug. I would happily take four nights of Gastro over the neverending spell of nausea and digestion trouble.
I think back to the simple days and smile.
To think that I actually whinged about having a nose clogged with mucus and water eyes from sneezing… how ridiculous does that sound?! I had a very weak tolerance to illness, and that is okay. In the beginning, I wanted to die because I felt I was not strong enough to go on another day.
I hate my illness now, but I have grown more accustomed to the symptoms.
I am stronger.
I know that if I get a ‘better’ day now, it is nothing like my past days. I try and pack it with as many exciting things my body will allow me to do, but I’ll most likely never see a ‘100% better’ day ever again.

I think I could be a Receptionist.
This is not an intended joke, but I hope you laugh.
I am, though, serious.
I have called SO many offices of Specialists and Doctors, in which I have picked up numerous tips along the way and kept them in my memory bank.
I have received the most awful, rude, uncaring receptionists in person and over the phone.
If someone is calling you to book an appointment, it is most likely because they are sick.
They don’t want to be sitting in a waiting room with blaring music from your radio, or bright lights that make you squint. They certainly don’t want to be spoken to like an idiot, and if they request something it is most likely because they are struggling and NOT trying to annoy you or make your job any harder.
I have now obtained the qualities to be a pretty perfect, understanding receptionist.

‘Use time wisely’ is a statement my future self will live and breathe by.
Back in the days, I would cancel on friends as I made the choice to work extra hours or study. There is only so much time in one’s life.
Who honestly wants to spend it doing overtime, or studying excessively? I regret being spontaneous. I regret coming home super early when I had enough energy to stay out late. I regret turning down my loved ones, to spend time inside these four walls. I’ve been stuck behind these four walls for over a year! I would be more than happy to leave!
I now have all of the time in the world, literally, but I do not have the health that I used to, to get up and about. What are weekends? I have weekends all week. No, they aren’t as fun as you think.

I ‘stress less’ nowadays.
I used to be a fiery ball of lava – literally. I used to make myself worked up over the tiniest, unimportant things. I would be late by two minutes, and cry about it all day. I would be busy, busy, busy, which made me angry, angry, angry and I would stress to the point where I couldn’t sleep. If this sounds anything like you, THIS IS NOT HEALTHY, so do yourself a favour and stop it immediately. Sit back and relax.
If you are five minutes late, an hour late; apologise and move on.
Enjoy your healthy, stress-free mind whilst you have it and before the bigger things come in that you REALLY have to stress about.

I have learnt to let go of anger and petty past crap that I don’t even remember happening.
Do you know how much quality energy humans spend on being angry and feeling hate for others?
Do you know how much energy we could save if we didn’t relive awful, painful memories over and over in our head?
Humans are different. We were designed differently.
We will naturally disagree, argue, have ‘fallings out’ but please don’t let them ruin your happiness. Forgive and move on, or just move on and accept what happened.
Think Spoons, for a minute. Imagine how many Spoons you use holding onto that frustration you have had because you had an argument with your partner?
Holding onto bitterness is a very tough cycle to get out of, and whilst you are spinning, you are breaking yourself down to nothing.

Cancelling on others, or being cancelled on, does not mean that you/they love or care any less.
Since being ill, I have cancelled on people too many times to count because I am unable to judge how I will feel on the day, which means that I am unable to plan many things. Everything now must be spontaneous.
If I cancel, please don’t hold it against me, nor will I hold it against you if you cancel. I have all of the time in the world to see you, and entire days where I am sure I can spare thirty seconds to message you.

I am going to see you eventually.

I regained my passion for writing.
Prior to my blog, I didn’t write a piece for just over two years.
I know that many of you are the same.
I lost my spark, but my blog brought the feeling back and it is currently stronger than ever. It was the best decision I made, regardless of how many times I went to take it all down.
I didn’t think I was good at anything except Childcare, and that was the one thing my health would not allow me to do.
But I now think that writing is my calling, and it always has been.

I have learnt that the Government sucks.
Because most of us fall into the Uncategorised category, a lot of us aren’t eligible for benefits. You most likely cannot put ‘Chronic Fatigue’ on the Illness list, no matter how debilitating your symptoms are. I know that here in Australia, Gastroparesis does not count as being ‘sick enough’.
And that’s what most of us most likely are; ‘not sick enough’. This topic makes me angry, so here is a simple message for Government’s Worldwide:
Acknowledge that people CAN fall ill at random times, and that they CAN be undiagnosed, and STILL be ill enough that they NEED some kind of income support.
CREATE a new category for us, so we don’t have to GROVEL at your feet to try and convince you that we desperately NEED help.

I have learnt that a balance of both Western and Alternative Medicine is good for your body.
When your body is rejecting Western Medicine, you naturally turn to anything else you can find to help. Alternative Medicine was my building bridge to strengthening my body, to then be able to take the Western Medicine that I needed, and I am so thankful for it. I research everything before I take it, so I am prepared for side effects, and it’s also fun to obtain new knowledge!
It has taken me a year to finally be on a mixture of medications and supplements that my stomach can actually tolerate.
I am now a firm believer that when you are ill, it shouldn’t be a choice of one or the other. Have a balance of both, be educated in what you are taking and your body won’t hate you for it!

I have gained the utmost respect for everyone who has chosen to stick by me.
I am a bitch.
There, I said it and I apologise.
People don’t have to stick by you if you are sick. I naively thought, when I was first diagnosed, that Illness gives you a Hallpass for people to actually care about you. Wrong. If anything, it pushes them further away from you.
The people who stick around, should be treasured.
I have a war between my brain and my body. I get frustrated and annoyed with myself, which then is sometimes taken out on those who I love. I am sorry.
Thank you for not leaving me, even when I drove you absolutely crazy or looked like a walking corpse. Thank you for loving me unconditionally.
I just want you to know how much I value each of you.

I am turning the tables to my lovely followers.
We might have similar thoughts, or different, but I want to know;

what has your illness taught YOU?

So, you’re Chronically Ill. Now, what?

Hello.
If you are a newly diagnosed sufferer and/or blogger, you are in luck; you have come to the right place.
I want to extend a helping hand to you; think of me as a shadow.
Why would a stranger actually want to listen to you?
Because this stranger knows exactly how you feel, and she wishes that she had someone to talk to when she first began her journey through illness.
Let me guess – you feel a range of emotions all at once?
You are afraid, confused, and incredibly frail.
You’ve been suffering for long enough, yet you still don’t have a total grasp on each symptom, and when you think that you do, you are struck down with multiple new symptoms.

You’ve seen a number of Doctors and Specialists and had every test under the sun.
Maybe you are diagnosed, maybe undiagnosed.

Do yourself a favour.
Take a deep breath in, and release.
No, really. Do it.
Close your eyes and take a deep breath in,
hold it for five seconds,
and release very slowly.
Do this as many times as you can before you read on, as what I am about to share with you might be hard to sink in.

I want this to provide you with reassurance; that you are not alone, but I would also like to share my wisdom with you from my own journey. When I first fell ill, I had nobody to turn to. I suffered for months in silence, as nobody entirely understood what was happening to my body, or believed me. I look back and wish that I had someone who said, I believe you. I wish I had someone to talk to about all of this medical stuff and the big life change.

When I say that you have come to the right place, I really mean it.
As you sit behind your screen, you are actually surrounded by many other sufferers sitting behind their screen, experiencing the same things; we all want to be heard, helped and listened to.
You will make lifelong friends on here, and they will be incredibly significant in your journey.

First thing is first; you are sick. It’s a bit of a shell-shock, isn’t it?
You will hear the term “Chronic Illness” floating around. This means that your condition has gone over the three month mark, and doesn’t have a date of finish. You might also hear the term “invisible illness”. This means the illnesses that cannot be “seen” or cannot be “diagnosed”. For example, you can very much see the flu and its symptoms. You cannot see vertigo or pain.

Secondly, you will need a folder. If you don’t have enough money to purchase one, do not stress. Just keep everything “together”, nice and neatly. You will hear me rant about this wondrous folder through-out my blogs, amongst other things.
You most likely won’t have to print anything; your Doctors will be doing the hard work for you. Now, you need to ask your Doctors for every test you have – results that were positive AND negative. Bloodtests (the general ones) are the most important, as some Doctors tend to miss the smallest things in this lot of testing. If you have copies of everything, and they are recent, it saves you from being poked and prodded in the future by new Doctors.
Doctors MUST give you copies of your file, if you ask for them, so please do not sit there and take No for an answer!
In this folder, try and keep note of all of your symptoms, medication trials and food intakes (if you have digestive or stomach issues). Eventually, you will come across a Specialist who needs this information. You are better off having a few weeks of data instead of nothing.

I am making an assumption that most people have an Iphone or touchscreen phone with downloadable apps? Learn to navigate your way through Calendars, Reminders and Notes.
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As seen in the image, my phone holds all of my important reminders. I plan in advance, so I am well prepared for each visit.
Please remember to back up your phone, in case the unthinkable happens.
If you do not have a phone, then invest in an oldschool diary. No need for backing up, there!

I suggest that you find the time to make a call to the office of your Government and see if you are eligible for a sickness allowance or illness benefit. Some of us are able to work, others cannot. The benefits vary worldwide, but every cent helps and there is no harm in asking. If you are not eligible, then do not feel ashamed to ask your Doctors if they are able to ‘bulk bill’ or provide a rate of concession to your fees. Some tests cannot be Bulk Billed, but like I said earlier, there is NO harm in asking!

I suggest that you book yourself in to see a Psychologist.
A Doctor can provide you with a list, or you can do some research of your own.
I can see you rolling your eyes at me; the good ol’ “I don’t need to see one of them” faces.

Yes, yes you do.

You are experiencing, or about to experience, something traumatic.
You should not go through it alone.
You might have a great support group within your friends and family, or maybe you are without. Regardless, I believe it to be a crucial part in your journey. You might feel “on top of everything”, as I did for months, but there will come a day when everything becomes overwhelming. You will evidently feel saddened, anxious. Life will become much harder, so help yourself through it.
I did not see a Psychologist until ten months into my illness – after I had endured countless hospital visits and appointments, testing, ridicule from Specialists, loss of friendships, and changes to my body. I was emotionally, mentally and physically burnt.

I regret not seeing one sooner. Think of them as your Open Diary. Tell them everything you are feeling; good, or bad. When they ask you how you feel, be honest.
You can see them as often as you like. I see mine once a month.
If you do not feel comfortable around the one you find, see new ones until you DO find that one who you click with.
I promise it makes the experience a little less lonely, and you will thank yourself for it in the future.

Be prepared to try everything.
If you want, one day, to be healthy again, you will take the medication prescribed and you will try alternative therapies, but of course there are limits. Do not push your body to do things it is unable to do. Take new medications and supplements ONE at a time so you know which one you don’t react well to, and please, do not end up in the backyard of a sister’s, cousin’s, uncle’s, best friend who claims to be a Qualified Practitioner.
Choose your Doctors and Specialists wisely, but be open-minded.
Sometimes what helps us, are the things that we least expect.

You are going to have to grow thicker skin and become your own best friend; as blunt as it sounds, you might not feel the support you used to feel prior to being sick.
You will learn to read test results like a novel, and you will learn to trust your instinct.
You will receive a lot of backlash and uncertainty from those around you; this unfortunately includes Doctors, Specialists, friends and family.
Don’t let this make you lose faith in humanity.
You can sit in front of a Doctor and explain how sick you are, even though your tests are coming back as negative, and they will not flinch. Their first response will be “but, you don’t look sick”, or “the tests do not show anything, therefore there is nothing I can do”.
You must keep pushing for answers.
You must find the right Doctor, even if that means seeing twenty before one listens to you. Do not let any of them belittle you or shut you down.
Remember that it is a Doctor’s JOB to help SICK people, and you my dear, are sick. You deserve as much time as the girl who just walked in with the flu, because at the end of the day, we all want the same thing; to be healthy.

I want you to keep telling yourself that nobody will truly understand how you feel unless they experience it themselves. Try and not take things that are said, to heart. I know it is hard. I have turned away in tears multiple times, but I told myself that it was because nobody really understood what I was experiencing. I cannot hold anger inside of me for those who pass judgement on me. I don’t have enough spoons to put towards holding anger for someone (hehe).

I learnt quickly to change my perspective of things, and people’s actions. If they want to be educated in your illness, they will ask questions. If they don’t care, their response will be the opposite. All you can do is take care of, and stand up for, YOURSELF.

Connect with others in your community or online through your blog. There are thousands of sufferers who are probably your age, living in your city, and have chosen to write a blog for the same reasons that you have. Most of us are unemployed, stuck at home, and feeling the storm of loneliness.
Be prepared, and open, to making Penpals all around the world. My very best friends are actually international, and I met through my blog. The best thing about having international, ill friends is that you can speak to them via Skype and Social Media without leaving your house! (Of course, I would love to actually spend time face to face with all of you, but online is incredibly convenient when you are ill and the best thing is that you each truly understand how I feel!)

Please take a moment to read The Spoon Theory, as you will see those words pop up all around the Blogging World, mine included. You are now apart of that theory, and have your own spoons to carry and allocate to your days. I also have numerous past blogs from my journey earlier on that you might want to navigate your way through from my main page.

I know this is a lot of information, so I will begin to tie this little chat up with a breakdown of what you have just read:

1. Make an Illness Folder
2. Learn to use Calendars, Notes and Reminders
3. Enquire about Illness Allowance or benefits
4. Book in to see a Psychologist
5. Be open-minded in trying new things
6. Trust your instinct, and be tough
7. Connect with others
8. Read The Spoon Theory

 

I just wanted to wish you the very best of luck on your journey, and remind you that you ARE strong and you ARE brave. Chronic Illness is the most terrifying, excruciating, distressing, confusing whirlwind I have ever experienced. It is okay to feel everything you are in this very moment.
It can also be lonely, but it doesn’t have to be.
I promise that it will make you appreciate and love much greater than you did before.
I am an email away if you need someone to talk to, vent to, or if you want to ask ANY questions.

To my usual loyal followers, if you can suggest anything you’d like me to add to this post to be of assistance to further sufferers, please comment below! I have no doubt that there are many things you wish someone told you when you first began your journey.

Until next time,

C, xo.

My Living List.

My apologies for my recent absence. I am sitting here fighting through my brain fog to write this piece, so I apologise also for spelling mistakes and grammatical errors.

I could sit here and tell you that I’ve been busy, which I guess is true to some extent.
But truth be told, I just couldn’t bring myself to write.

I hit a low point – one of those extremely low points where you cannot find one single strand of string to hold onto and live through another day. I went through a lot in a short month’s time. I dealt with heartache and the loss of a relationship I was quite fond of, I had numerous inconclusive, boring appointments, I faced issues with my Government about my health, and I naturally battled my inner Depression and Anxiety demons as a result of everything.

I was not brave enough, or well enough, to write or read.

But here I am, well into 2016 – a year I never thought I’d see come, and I thought that it was time to write.

I spent New Year’s alone, and as I sat there counting down the seconds until we “welcomed” 2016, I thought, what the heck have I done this year?
What have I achieved?
This illness, the appointments and symptoms had naturally consumed me and I was ending the year emotionally and physically battered, and alone.

Good ol’ Social Media being inundated with joyous posts from others about how much they succeeded during the year, photos of their adventures, messages to their loved ones and a list of New Year’s Resolutions that were either diet or travel related.
Of course I was jealous. I couldn’t stand it. My entire year had been a blur. I had some ups, but mostly downs.

I didn’t want to go into 2016 feeling the same… losing another year to nothing.

I’m not sure about you, but I was left questioning myself.
Was I to blame for not having achieved anything?
I thought I was strong enough already battling something that most people couldn’t dream of feeling or going through… I thought that I was trying hard enough? How much harder could I try to get better? There were so many thoughts, and then I realised that I had lost myself in trying to achieve optimum health and became an ill zombie.
I was given the bad end of the health stick, and I naturally signed my life away in an instant. Appointments and symptoms were my life now. Every time I planned to go back to work, I was stopped by another flare up and I lost myself to the feeling that I would never go back to work again.
I didn’t think that I deserved to be happy.

I didn’t know how to be sick and be happy, so I stopped living.

What I should have done was realise that I was still very much capable of achieving things. They might not be as big as other people’s achievements, but they were achievements nonetheless.

I was going to be sick for a while longer, so what was I capable of achieving?
How could I make this year a little more memorable?
How could I accept my illness and live at the same time? I had forgotten what it felt like to have muscle strain from laughing, and I had forgotten what it felt like to take a spontaneous adventure.

And all of these thoughts prompted the ultimate question, how can I be happy?

I created a Bucket List, which I prefer to call “My Living List”, and in 2016 I plan on achieving one or more things from my list and continuously adding to it.

I invite you to write one too.

I am sure that there are a handful of things that you wanted to do before you got sick, so tell me what is stopping you from achieving?

Being Chronically Ill?

Maybe some of your dreams are a little out of reach because of your current circumstances, but I assure you that there are small things you can still do. I also know that we can’t plan things, as our symptoms usually don’t cooperate with plans. But, there are small, exciting, uplifting things that you can still dream of doing.

You deserve to be happy just as much as a healthy person.
Your goals don’t have to be big or adventurous. They can be something small like getting up and out of bed, taking a few steps outside, writing a blog, doing something independently, laughing more… or you can take a leap and write your craziest, most daring dreams in hope of achieving them.

I began with a mixture of both.
There is no timeline on when the goals have to be achieved, and the best thing is that you can write blogs about your separate achievements! Share them with the blogging world! The blogging world is fantastic, so connect, make friends and help each other achieve your little goals!

I do suggest though that you don’t make the goals generic and all about your illness. Of COURSE we all want to be illness free, or manage our symptoms better, but the entire point of this is to focus on things that make us happy and give us confidence. Instead of writing “finding a cure for my illness”, I broke my goal into much smaller chunks and said “have one week nausea free”.
You have to keep your symptoms in mind, but don’t let them stop you from living. Take everything one day at a time.

I surprisingly feel much livelier already having this list to guide me through the year.
I have horrible symptom days like today, but I am really pushing myself that little bit more to get out beyond these four walls and the shadows of my illness, and live.

Join me.
Take the time to sit down and write a list. Do it with a loved one, or on your own. Grow your list and start crossing these dreams off day by day, so when the end of 2016 comes we can both look back and not feel regret.

Instead, we can stand together, proud, for making the most of every as many moments as we possibly could.

Remember that if you choose to post your list to your blog, please tag “mylivinglist” so others can find you! Happy 2016 to my loyal followers. May this year bring us all better health and happiness.

Here is my own personal list that I will continue to add to:

  1. Get my Diploma in Early Childhood Education and Care
  2. Get back to work casually or part time
  3. Go for a half an hour walk alone
  4. Go for an hour walk alone
  5. Do 10 Minutes Workouts for a month straight
  6. Complete the 30 Day Squat Challenge
  7. Start Bachelor of Early Childhood Education
  8. Finish Bachelor of Early Childhood Education
  9. Try and say yes to going out, unless you are having a 10/10 bad symptom day!
  10. Get a job in Childcare/as a teacher
  11. Write a Children’s Book
  12. Publish a Children’s Book
  13. Spontaneous Getaway
  14. V̶i̶s̶i̶t̶ ̶a̶ ̶F̶r̶u̶i̶t̶ ̶F̶a̶r̶m̶ ̶
  15. Go to a park full of beautiful trees
  16. Dressup for a fancy dinner
  17. Sleep in a tent, under the stars
  18. W̶r̶i̶t̶e̶ ̶a̶ ̶b̶l̶o̶g̶ ̶e̶v̶e̶r̶y̶ ̶d̶a̶y̶ ̶f̶o̶r̶ ̶s̶e̶v̶e̶n̶ ̶d̶a̶y̶s̶ ̶
  19. Hit 2000 Followers
  20. Drive for an hour
  21. Drive independently
  22. Tolerate more vitamins and less unnatural medication
  23. Dance to Flo Rida’s “Sugar” Hiphop Routine
  24. Go overseas
  25. Volunteer
  26. Don’t hold onto negative energy and hate
  27. Makeup and hair makeover
  28. Have professional photos taken
  29. Go to dinner with Childcare girls
  30. Go to dinner with Red girls
  31. Go to dinner with Spotless girls
  32. Have one week nausea free
  33. Have one week dizzy free
  34. No alcohol for two years
  35. Be able to say “I feel better in the stomach”
  36. One more piercing (eight as a total)
  37. Tattoo to signify strength
  38. Go to three football matches
  39. Cook something organic and yummy
  40. Volunteer at Royal Children’s Hospital
  41. Start Foundation for Invisible Illness
  42. Visit my overseas blog friends
  43. Visit a shopping centre alone
  44. Go to a spa retreat
  45. Conquer a Ferris Wheel (when less dizzier)
  46. Sing for an audience
  47. Read an entire novel
  48. Visit the zoo
  49. Donate toys to Christmas Tree
  50. Move out of home
  51. Start Pilates
  52. Don’t go to sleep angry!
  53. Have all of my certificates framed
  54. Eat one of those fancy burgers advertised everywhere
  55. Dye hair entirely blonde
  56. Go camping
  57. Eat waffles (gluten free waffles?)
  58. Walk barefoot on a tropical beach
  59. Pay for someone else’s groceries
  60. Learn more Italian words
  61. Catch a train or bus independently
  62. Be confident to take a photo of myself every day for thirty days
  63. Romantic kiss in the rain
  64. Attend as many birthdays as possible
  65. Meet someone famous
  66. Eat from a Food Truck
  67. Write for a magazine
  68. Learn to swim
  69. Refrain from using Social Media for a week
  70. Have one specialist say “you have made improvements”
  71. Be healthy enough to donate blood
  72. Visit the snow
  73. Go to a Dressup party
  74. Cut out coffee from my diet entirely
  75. Make/try Kombucha tea
  76. Hit 100+ Facebook page Followers!
  77. Write fifteen poetry pieces
  78. Make a difference in someone’s life
  79. Laugh until my chest aches
  80. Grow Strawberries!

Just One of Those Days.

acupuncture: cried from Dry Needling pain in already pained neck muscles.

psychologist: cried for an hour about not wanting to live with pain or illness anymore,
financial stress,
going in circles with symptoms and potential diagnosis’,
and not being eligible for a Disability Pension.

doctor: cried for an additional hour,
used up all of the tissues.

home: crying whilst trying to fight through brain fog and write a WordPress post.

And it’s okay because it’s just one of those days.

Lessons in Loss.

image1

The first entry from my journal in 2014 (first stages of illness).

I found this page in a tiny red leather back diary, dated back to late 2014; the period where I initially fell violently ill.
It is a time in my life that I try my hardest to not refer back to.
It was months spent in my house, bones in bed, staring at the walls to pass time, the smell of illness, being carried through public, struggling to eat, sleepless nights, a lot of blood noses and clotting, and unexplainable pain that had consumed my body day in, day out.

I am sure you have similar stories that you don’t enjoy thinking back to; the nightmare story of how the plague first began.

I was taken back when I first read my diary entry, and what followed.

A whirlwind of emotions came over me.
I was relieved that I did not take the step to end my own life, despite how agonizing each day was for me.
I was thankful that these words had been written, and so honestly, because I now had the opportunity to reflect.
Mostly, I was deeply saddened for the girl who wrote these words, as I knew very well what she was suffering at the time and how desperately she wanted a way out.

In that moment, (where I wrote the entry in my journal) I was in shock. I was very sick every single day. I rolled out of bed and sat in the same chair every single day. I was barely eating and experiencing a lot of pain that nobody could explain. I was exhausted from the testing I had had that came back “all clear”. I had no idea what had made me so sick, and why I worsened overnight. I had no answers, and my body was failing me.

Living was a struggle.

In that moment, I was so deep within the symptoms and darkness enveloping my thoughts, that my only interest was my own. I did not think about the reaction of my loved ones, or the potential for me to improve and/or make a recovery. It seemed impossible.
I wanted a way out, and fast…to make the decision to end my life and be freed from this nightmare once and for all. I was happy to give up the smiles from strangers in the streets, the shrill giggle from the children, the fresh air, beaches and warmness from cuddles.
I would give up everything, to feel nothing.
And nothing that anybody said could stop me.

Imagine a person with a Chronic Illness as forever walking down a dividing line between the past and the future. Looking backward, he can see everything illness has taken from him or has forced him to relinquish. Looking forward, he can’t see anything quite clearly. There’s no going back to the past, and the future is uncertain.” (KJackson 2014)

One of the greatest challenges of Chronic/Invisible Illness is coming to terms with loss and the accompanying emotion, grief. While grief is usually associated with the death of a loved one, it can occur after any loss, and in this case it is the loss of one’s self.
The losses that accompany Chronic Illness are continual.
What differentiates physical death and loss from Chronic Illness Loss, is that we are not lost entirely. We lose emotionally, mentally and physically but we must continue to brave each day in our given bodies, whereas death is the loss of someone completely.

The loss that follows the one in our bodies varies. We may be forced to give up our career, which provides income. We lose money, which is used on treatments and appointments. We lose personal power, independence. We may lose friends and feel abandoned by loved ones. We may have to give up our hobbies and lose our self-worth. We may experience loss of control over our bodies. And we may have to let go of some of our goals, losing the future we had once envisioned for ourselves.

Suddenly, the beautiful, carefree lives we imagined for ourselves have crumbled, and we are going through the motions of grief like a song on repeat.

Numerous psychologists have organised Grief into stages: Denial/Disbelief, Anger, Guilt, Sadness/Depression, Acceptance. It makes sense for there to be a process of how we handle Grief and Loss, and I agree that we most certainly have to go through these stages, but I personally believe that when suffering with a Chronic, Invisible Illness we never reach that last stage entirely and we may go back and forth with the stages a million times over. There is no right way of going through the motions. The motions will not end, as long as this illness remains.

I am not here to put a negative, depressing spin on illness.
I am here to tell you that you are entitled to grieve the loss of your old self.
You can go through as many of the Grief stages as you like.
You are entitled to mourn, cry, feel jealousy, scream, contemplate fairness, isolate yourself…

Do whatever you need to do,
as many times as it has to be done,
for however long it has to be for.

But please, hear me when I say that you will come out of it and there will be a day when you will yearn for the brightness you once felt prior to being ill.
You will find the willpower to do something that you love again, to be reminded of how beautiful this world really is and to smile.
You will laugh again, really hard, and your chest will ache, but it will be worth it.
There will be smaller goals that you can set for yourself, that you will achieve, that will grow into larger goals.
There will be a day, (and hopefully a few of them) that is easier on your body, and your mind.
There will be days that go quicker than others.
And hey, you will have bad days. You will spiral back to the beginning and feel like you are reliving that initial moment over and over, but these downfall moments aren’t worth leaving this world for.
They are temporary.

There are so many lessons that I have learnt on my journey, (and I am sure there are many more to come) but the one that stands out the most is a recent one.
When we write about Depression and make the statement “I want to die”, it is actually our brain sending out an SOS signal to the rest of our body and inner thoughts that are torn between choices.
We have reached our limit, and by voicing this strong statement, part of us is actually hoping that there is a silver lining, that someone can save us, that our illness could be cured, that there is another way.
We are, in a way, talking ourselves out of doing it… we have a glimmer of hope that things can be different.
This warning, whether verbal or written on social media is very much real and I am in no way trying to make it sound like a game or a joke. The feeling of wanting to be freed from the pain, is very much real, and it is absolutely soul wrenching that people go through it (myself included) because they have made themselves believe that there really is no other way.

There are other ways.

I’m using myself as an example.
Look at that image again.
I know that you feel it too – the emptiness, the sadness… that there was no hope left. But, I somehow woke up every day for the next year.

And, I am still here.

I had really awful days.
I am currently having one now filled with sharp symptoms and brain fog (just quietly, I am struggling to tie up this piece nice and neatly).
I hit that low point time and time again and I convinced myself that death was my only option, but somewhere along the way, I found Specialists who were able to bring me slight relief.
I found love and care within strangers.
I had more stretches of good days than bad.
I was able to set goals, achieve them, and set more.
I stumble, but I pick myself up and each time I am stronger because I learnt how.
I learnt (and am still learning) about the medical system, diseases, techniques, relationships, and ultimately I learnt about and accepted my inner strength.

With time, I recognised that longing for death was simply a feeling. It was welcomed to be felt, as it was a sign of grieving the loss of my old life and self. It was apart of my own process.
It had to be felt, but so did other feelings and feelings that I was entitled to too… brighter, hopeful feelings.

This one lesson in itself gave me more control over my life and my ability to try and manage this disease.

I own this body, not my illness.

I can now take a step back during my bad spirals and look back to that dark, lonely moment where I wrote those painful words; and tell myself that I made the right decision to stay and that I have a place here… a story worth sharing.

And, so do you.

Defining Disabled.

This post has been brewing for some time now, but I have not had the brain power to write it. I am asking you to take five minutes (or longer, depending on how turbulent the brain fog is today) to read.

After seeing this Facebook post by a fellow Melbournian woman, I knew that I had to push past my own personal issues and write; that this was the time.

I remember the exact moment where my Gastroenterologist used myself and Disabled in the same sentence.
He spoke so freely.
There wasn’t a breath, there most certainly wasn’t a pause.
I expected a pause.
Please, allow me to absorb what you have just said before you keep talking Gastroenterological language.
It sounded a bit like “Blah blah blah, now that you are disabled we should apply for the Disability Pension, blah blah blah”.
I am sure my mouth was on the floor and I held up a finger to stop him, and said, “Now wait a minute Mr. I’m not disabled
He DID pause at this point and said, “Ah, yes you are, blah blah blah

Maybe it was my inability to accept that I was Chronically Ill, or maybe it was purely the naivety in me (which heavily consumes most of society), but at that very moment I did not want to believe that, nor could I understand how, I now defined as Disabled.

What is the first image that pops into your mind when you think of the word Disabled?
Majority of you would say this:

disabledlogo

because this is the image that defines a Disability worldwide.
It is plastered at every Shopping Centre Parking Bay, every toilet, it is on the permit of every car with a Disabled passenger or driver, and it is in every Government centre or office, every hospital, every Doctor’s Clinic.

I do not require a wheelchair, but this is the picture that I am bound to; this is the picture that now defines me.

The term Disabled being outlined as, “having a physical or mental condition that limits ones movement, sense, or activities“.

In the definition it is clearly stated that not only can the condition be physical or mental, but that it limits ones movement, sense or activities.
Here is a newsflash to the Government Departments Worldwide:
you have chosen an image that shelters sufferers of VISIBLE Disabilities, ie. special needs, those who use a wheelchair, walker or crutches as transport.

You are feeding the wrong message to society, or maybe it is in fact that your message needs an update.

You have separated sufferers and put us on scales of which Disease or Disability outshines the other, and apparently in order to qualify as Disabled, society believes that I have to physically look SICK and IMMOBILE.
You have put some of our heads as targets to be subjected to bullying.
Our illnesses and personal struggles are questioned, mimicked and misunderstood.

People walk down the street and see a person from crutches emerging from their car in a Disabled Permit Zone, and they think “oh, they’re Disabled”.

But what about sufferers like Justine? She parks her car in a Disabled Permit Zone (with a permit), tries to go about her day as normally as possible, and receives judgement from strangers behind a pen and notepaper.

What about the rest of the population suffering from illnesses that cannot be seen, and whom qualify for a Disability Pension or Permit to display?
What about the Cancer patient who has not lost their hair?
The MS patient who still has minimal mobility?
The sufferers of Fibromyalgia, POTS, Chronic Fatigue, Depression and Anxiety with symptoms that cannot be SEEN?
Or how about me, one of many sufferers of Gastroparesis?
You cannot SEE my Nausea (unless I am vomiting). You cannot see the Chronic Pain, Dizziness or Fatigue that accompanies my disease and confines me from partaking in a fulltime job or travelling independently.
I am sure that most of your symptoms also go unseen. We suffer silently or invisibly.

Society has been educated to assume that the ill, must look ill; that our exterior must match that of the Disability Symbol.
But this is far from the truth.
It is POSSIBLE for an illness to have stricken a body that is still very mobile and appears to relatively “normal” on the outside – a body that is young or old.
It is POSSIBLE to be chronically ill, but have days where you are feeling well enough to experience your day “normally”.
We might be able to walk on some days, you might see us exercising, you might see us driving.
This does NOT mean that we are not Disabled – it means that we are having a good day of health, and there is NO SHAME in that.

Please, do not take this post as an intention for me to discourage others.
I am one of you.
I am Chronically Ill.
I AM Disabled, but I am one of many who are tired of being judged based on my appearance and its relation to this symbol.
I am tired of having to explain myself and be compared to the world’s accepted view of a Disability.

The Government doesn’t just willingly hand out Disability Pensions to everyone that applies. We go through a gruelling application process, a handful of rejections, appointments, interviews, phone calls and not to mention, we are suffering enough day to day with our symptoms.
We don’t want the pension, we NEED it.
We would choose health every day, if it were possible.
We don’t want to be like this. I know myself, being twenty-three, I should be enjoying my life and instead I am stuck at appointments and fighting for a Government income to help pay for these appointments.

A Disability is a Disability.
There should be no further questions, right? But there ARE and that is why I am suggesting a change altogether.

The Disability symbol itself needs to be altered to something more accepting of all circumstances, or there needs to be a complete reinvent of a symbol for those suffering with Illnesses with symptoms that are not visible.
Think of words that describe us, but do not limit us to the image of a wheelchair?
Maybe we do not fall under the atypical “Disabled” category, and need a category of our own?
Perhaps a letter such a H (for Handicapped as it is a much more unified word), or I (for Illness) should be used on a sign as opposed or alongside the current one?

If you are reading this and can admit that you are one of the judgemental people above – the ones who wrongfully assume that in order to be Disabled, you must be in a wheelchair or visibly impaired – then you really need to make a change. Please think before you do something as pitiful and hurtful as above, based on another’s appearance.
How is it fair to bully, when you are unaware of one’s circumstances?
I can assure you that you would not like it if it were you, or a loved one being treated this way whilst being ill. So, what makes you think that we enjoy events like this one? It’s plain and simple, just don’t do it.

At the end of the day, this post won’t stop you from passing judgement and neither will the symbol.

But just let it be known that we (those suffering with Invisible and Chronic Illnesses) have braved more than your words and cruelty.

You might not think there are many of us, but we come in numbers, and we are stronger than your view of us.

 

When your support system fails you.

Chronic Illness is terrifying and traumatic for the person who has it, but apparently it is as equally traumatic for our support system and results in many of them not being able to cope and disappearing on us.
I suffered for many months alone before someone contacted me to offer support. In this time I experienced many traumatic things on my illness journey, things that would have been good to talk to with family and friends. I didn’t have a support network back in my early days of illness, and nobody should have to face it alone. So please, if you are newly ill or experiencing hardship, please reach out to someone if you are unable to talk to friends or family.

I should have reached out to a therapist a year ago, but instead I battled alone and held in all of this pain and suffering from the dramatic lifehange. I sat back hoping that my closest friends and family would be there to support me, but it took months before they did, and not all of then ended up by my side.

An incident happened today which has prompted me to ask the question below. I had a very close friend of close to nine years who has silenced me since getting ill. She became busy, didn’t have time, didn’t care. So, I (right or wrongfully) approached her and let out my feelings of disappointment and let down, as I have learnt not to hold onto feelings and let them eat at you, and it escalated into the usual hurtful comments about my illness, Facebook delete and the good old’ “don’t message me again”.

What is one of the inconsiderate, uncalled for (and possibly downright nasty) things that your supposed friends, loved ones or Doctors/Specialists have said to you along your Chronic Illness journey?
Please share below.

We are dealing with so much in our lives already, but society assumes that we are; exaggerating or weak, which results in having a bunch of these idiots throwing their opinions and ideals into our lives, telling us how to live and what is right and wrong.

I was told that my illness has indeed defined the person I am today, and that I also need to be better than the illness and not weak; that I use the Illness Card as a victim card.

See, this is what is wrong with society ^

And this was coming from someone who I have spent a lifetime with and who was meant to care for me.

Take a walk in our shoes and then tell me how you feel. You unfortunately lose a piece of yourself to your illness but that does not mean that you don’t try your absolute hardest every day, even though you might miss lunch with a friend, or a birthday, or work. It is NOT an excuse or an “illness card”. It is the way it is. You/we are doing the best we can, under the circumstances that we are in, and we shouldn’t be quiet about it.
And it is a shame that the people who surprise us the most are those within our support group. They don’t seem to understand how hard it is for us to struggle each day, and they expect us to get up and just face the world with open arms like they are able to. If only they had a glimpse of what this feels like, and the loneliness surrounding hardship, so they would understand entirely. Then I am certain that they would think before spitting out the harsh comments.

I have received it from Specialists before, but not from people who are meant to be apart of my support network, to which I received today.

We don’t deserve treatment like this. We deserve respect, and if we sit in silence we will not be heard.

Stand up for yourself and know that you deserve better, whether it’s a smartass Specialist, a disrespectful friend or even a family member who thinks they know your body more than you do.

Protect yourself first because I assure you nobody else will.