My Journey

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

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

Sick Enough.

The Government called me today.
I was, once again, rejected my claim for Disability.
Disappointing, yes, but even more so was the man I was assigned, as he finished our conversation with this (and I quote):

Once you hang up the phone, I’d like you to just sit down and have a real long, hard think about whether you are sick enough to be eligible for a Sickness Pension or Disability Allowance. Just have a really long think…”

I think that this statement sums up what is wrong with every Government worldwide.

HAVE A LONG, HARD THINK IF I AM SICK ENOUGH?

Oh hey, I had a long hard think and I suddenly, (after almost two years of being ill), feel that I am well enough to return to fulltime work and study. I actually feel SO great that I can start tomorrow!
I just needed to go through this year long process of applications and rejections, appointments, tests and letters for one of your employees to tell me to ‘think about my illness’ a little more than I have been doing over this past TWO YEAR PERIOD and realise that I am actually well enough to return to the life I apparently willingly gave up.

Here’s a thought – employ people who have the ability to show empathy towards those who have not CHOSEN this path for themselves – were GIVEN it.
You have my file, which I picture to resemble the length of the pages in the entire Harry Potter Novel Series.
You have every letter from every Specialist, and you know exactly how many times I have called because you have cut my payments or questioned my health.

This entire journey is incredibly stressful – especially the part where you have to deal with the Government. The process should be simple, but it isn’t. I understand that they are trying to prevent frauds from corrupting their system and receiving payments, and I also understand that they are pushing for thousands of people to return to ‘some type of work’ to accompany their therapy and improve their mental wellbeing.
I understand, but what I DO NOT understand is their disregard for the thousands of people who are GENUINELY ill and GENUINELY unable to work temporarily and permanently.

Sufferers are vulnerable as it is, yet we are left on our hands and knees trying to prove to your employees that we are ‘sick enough’, and we are ridiculed and not taken seriously.

Why would I willingly choose to live like this every day? To feel constant pain, and to spend 85% of my time in and out of appointments?
Why would I spend my last dollar on medication and therapy, when it could easily be spent on luxurious items for myself?
Tell me why I would give up my dream job for this new life?

Oh, maybe because I have a VERY REAL, CHRONIC condition?

To the imbecile that I was given today;
I took what you said into consideration and I did have a long, hard think after I hung up the phone today…

and I decided that I will most definitely be reporting you for causing me additional stress.

C.

Once Upon A Time, I Couldn’t Cook…

One major positive of being sick, unemployed and housebound for over a year now, is being given the time to learn how to cook.

And, let me be the first to tell you how thankful I am.

I come from a big Italian family; a Mother who cooks incredible dishes spanned over all cultures, a Dad who can magically create something tasty using the fewest ingredients, a sister who studied to become a Chef and a Nonna who has been cooking for the entire extended family for many, many years.

I, did not inherit the ‘talented with food’ gene, but when I fell ill I did not want to rely on my Mother cooking two different meals for our family after a long day’s work – (my diet was very different in the initial illness days. Bland, mashed vegetables and ‘gluten free’).

I remember sitting at the dinner table, overlooking my Mother in the kitchen one day. I was too dizzy to stand, to walk. I asked her what she was making, and she laughed in my face because I had never shown an interest before. I rose from my chair and dragged it closer to her; and this is where the lessons began.

A year on, I have mastered her famous Lasagne, Chicken Snitzel and Potato Salad. We have made treats that I could eat, and then we made treats (a lot of them) that I could only look at.

I have grown from burnt toast, to scrambled eggs, to… THIS:

a Raw Vegan Blueberry Cheesecake!

   
 
Lucky for me, it can be frozen for up to twelve months; and as I am currently incredibly ill with a throat and chest infection (on top of the usual symptoms), this means I can still enjoy it… And all year round!

Little steps, my friends. Little steps.

I have books filled with recipes and cutouts of recipes all over my room; all waiting to be made.

If you aren’t a great cook yourself, and are in similar health circumstances to myself, give it a go! No needs to buy a Beginner’s Cookbook when you have the internet at your fingertips!

If someone told me two years ago that I made that cake, I’d probably laugh in their face.

In this moment, I’m really proud of myself.

Normal-Sick.

My visit to my Doctor today went a little like this…
I drove myself to my appointment up the road, and felt pretty proud of myself considering my body is being plagued by dizziness, fogginess, razorblades in my throat, a phlegmy chest, the usual stomach pain, neck-throbbing, nausea and pre-period bloating.

I notice that he has been moved to a new clinical room, and that the light bulbs are brighter (this is how you know you visit the Doctor way too much; when you start noticing the small things).

Me: “For once, I think I am normal-sick”
*insert coughing spell*

Dr S: “Yay, congratulations!”
*insert usual Doctor check*
“You have a throat infection.
More good news is that you also have a chest infection!
And here is some final good news; antibiotics is a no-go because of your Gastroparesis…”

Me: “Yay?”

I have not posted about my illness in a while, and probably because there is nothing overly exciting to tell. It is so little, I can squeeze it into dotpoints for you:
– I started an antidepressant called Mirtazapine in hope of blocking receptors to my stomach telling me I am nauseous, increasing my appetite, and blocking my pain receptors in my neck. I have been gradually increasing it for two months now, so I should see big changes soon.
– I stopped seeing the Holistic Chiro, as I noticed that the more ‘neck’ exercises he gave me/manipulation he did on my spine, the more pain and dizziness I had.
– I am seeing a Rheumatologist next week for the first time.
– I am seeing an Endocrinologist for my underactive thyroid. Yes, I am supposed to be on Thyroxine but I have cheekily stopped taking it.
– I am still doing Acupuncture with my Herbalist, and we are trying to test new vitamins out.
– I have an extension of my Government allowance until May, and a case officer is reviewing my case anytime between now and May as I fought my rejection of Disability.
– I am supposedly expected to partake in work or study of some sort, part time, midyear (if I show improvements)

The REALLY great news is that Dr S is in the process of putting my ‘mystery’ case forth to a group of very important Specialists at one of the best hospitals at Melbourne; to potentially enrol me in a very private, limited place Chronic Pain Program.
Don’t bother researching it; I tried. There is no information on it. It’s so ‘hush-hush’ that they actually search for their patients instead of having patients go to them; because naturally, they’d have multiple patients applying to be seen.

Imagine a room filled with numerous Professors and Specialists from every aspect of the Medical Field – Infectious Disease Professors, Physiotherapists, Neurologists, Rheumatologists, Gastroenterologists and Endocrinologists – and imagine these intelligent people sharing their wisdom and thoughts about the very rare patient cases.

Imagine spending time with patients one-on-one to actually understand their bodies. At least, this is how Dr S has painted the picture in my mind. No need for appointments to and from Specialists – they are all in one room, looking at YOU… in this case, possibly ME.

Okay, so it doesn’t sound so fun for me.
I will be a fish, in a tank, at a Fish Market.

But hey, if this actually happens, I could be on my way to ‘managing’ my symptoms a lot quicker than expected, and sharing my information with you.
Any progress, is good progress.

Ps, Normal-Sick still sucks more this Mystery-Sick

Confessions:

I think about taking this site down at least four times a week.

I fought antidepressants for months, until I was forced into taking them.

I struggle with loneliness daily.

I haven’t had an anxiety attack in months.

I fear driving.

I always drop ice-cream on my shirt, or jeans, or mouth, or floor.

I am a horrible listener in person, as I am easily distracted.

I am a better support to others, than to myself.

I check my phone 80+ times a day.

I am in love with someone who doesn’t love me in return.

I lack in self-confidence.

I have been staring at my wall for over an hour, drawing blanks about my future posts.

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Reflections from Rock Bottom.

I stumbled across my diary from when I first fell ill – written literally a few weeks into my illness. Usually all of my diaries are written in hand, but this is one of the rare ones which was typed, and I know exactly why; because I was too weak to hold a pencil when I wrote it, so I typed aggressively until my fingers went numb.
I wanted to share it with you for many reasons;
firstly, it is an insight to what a flare up of Depression is actually like;
secondly, it shows how far I have come with my Depression. I still suffer, but my recent spells have not been as violent as the one you are about to read;
Finally, I think it is also a good insight into how terrifying the initial uncertainty is of having what feels like an alien in your body and losing total control.

If you want raw and honest, then please read on.

TRIGGER WARNING: there is a lot of swearing, grammatical errors out of rage, and multiple references to suicide and self-harm.
It is NOT my intention to offend anyone, so if you are easily offended, don’t read on.
You have been warned!

“Here’s the thing;
I don’t want to be here anymore – it’s as simple as that.
People usually long for more money, better jobs, a perfect partner; but I long to feel nothing, be nothing.
I don’t want to feel guilt about falling in love with someone else whilst I am meant to be in a happy relationship with a partner who I thought I adored. I never wanted to be that girl who cheated. I usually judge people like that, and now people are judging me.
I don’t want to waste all of my savings on medical appointments that give me no answers, and to pay for drugs and supplements that either make me vomit, or explode diarrhoea.
I don’t want to feel another symptom which can’t be medically explained.
Try explaining dizziness to a Doctor; they think you are nuts. How can I explain something that I don’t even understand myself?
I don’t want to live each day stuck in this fucking house, having to do the same fucking routine.
I wake, and I wish I didn’t wake.
I stumble out of bed, make a coffee and toast that I always fucking forget to take out, so I really eat charcoal. I turn on the television and sit there for hours glued to the screen, but not absorbing a word of information. My brain does not work. I cannot access it anymore.
I know that makes no sense, but it is like someone has locked me out of my account. I know the account is mine, but I cannot get the password right.
I crawl to my room like a helpless animal, and lie on my bed for hours because I feel every inch of my body throbbing. EVERY INCH.
Everyone keeps telling me to eat, and I can’t.
I want just want to scream; I CANNOT FUCKING EAT, NOT BECAUSE I DON’T WANT TO, BECAUSE IT FEELS LIKE MY STOMACH HAS SHRUNK TO THE SIZE OF A GRAPE.
HAVE YOU EVER TRIED SQUEEZING AN ORANGE THOUGH A GRAPE?
I THOUGHT NOT.
They keep screaming at me. Helpless screaming.
YOU HAVE TO EAT, PLEASE EAT, TRY AND EAT.
But no, I just sit there in silence and stare blankly at my food.
I don’t want to try anymore. The pain is unbearable. I feel like my stomach acid has shards of glass in it, and my stomach will not stop gurgling. It sounds sick. It IS sick.
My Doctor keeps telling me this is a viral infection. What fucking viral infection leaves you bedridden for weeks at end?
I have lost so much weight. I hate looking at myself. My skin is pale, and flaky. My hair is falling out. I am twenty-two and my hair is fucking falling out.
I have not eaten a meal in days. I don’t even miss food. I don’t remember what it is like to feel hungry. Can you tell me how someone can feel acid rising, and suffer from neverending nausea if they have nothing in their stomach? I want to vomit every second of the day. People try and feed me things to stop the nausea; it makes me feel more nauseous. TRY THE FODMAP DIET, they say, YOU HAVE TO TRY THE FODMAP DIET. Fuck the FODMAP Diet. That’s clearly not my problem if I am unable to stomach ANYTHING.
I have lost weight, and not one or two kilograms. I am 36kg now. I used to be 44, maybe 45.
I have a xylophone for a fucking rib cage and scales for skin.
And my fucking hair is falling out.

Mum comes home from work really late now, and I have to fake my happiness. I have to hold myself together, for her. She knows that I am sick. She doesn’t look at me the same anymore. I think that she thinks that I am ugly. That’s the stare she gives me. I see her staring at me when I bend over and she is in frontal view of my spine.
Well, I am ugly. I look like a fucking troll, with eyes bulging out of my head, skin and bones, fucking scales for skin and my once beautiful hair falling out.
They eat dinner in silence every single night, and I sit at the table because I have to. I watch them eat every bite. They used to push me to eat something, but recently they have stopped.
I force myself to help her clean, until I can’t take another step. My legs won’t carry the weight of my body any longer. I fear I will just drop one day, and I wonder if it will hurt. I’ll most likely hurt myself once I hit the ground.
I go to my bedroom and slice my skin, and I am so consumed by symptoms, that I don’t even feel the blade cut into me. How twisted is that? But I crave my old feeling. I need to have control of something. I don’t control my body anymore.
I am the last to go to sleep, probably because I DON’T FUCKING SLEEP ANYMORE. How does someone sleep when they are in excruciating pain from every region in their body, and they want to vomit? I close my eyes and do the stupid deep breathing techniques that the last Specialist recommended I try. He told me that I need to relax more. I really love how nobody takes me seriously.
Yeah, I’m fucking Depressed. Would you be Depressed if you were plagued with an unknown disease, making you incapable of showering alone and walking, feeling nauseous every second, unemployed, unable to drive or eat food?
So can someone tell the Doctors to stop pushing to trial me on antidepressants, and to focus on the real health problem here? I think that if I could return to my normal life, I wouldn’t feel depressed?

Mum won’t even let me have a shower until she is home, and near me. How embarrassing. I am twenty two and my mother has to stand guard at the fucking bathroom door because I am weak.
Why would someone CHOOSE this? The Doctors insinuate every fucking time that I am just ‘depressed’ or ‘stressed’. One of the idiots actually used BREAKDOWN.
What the fuck do I have to break down about? Is everyone really that stupid? I had a great group of friends, I had saved money and money to spend on myself, a partner who I had mindblowing sex with. I don’t even remember sex. It just dawned on me that he probably thinks about it for every second that I don’t.
I had my fucking dream job, and I was surrounded by the most innocent, beautiful souls. I wanted to educate, nurture and love. I had plans to BE someone, and this plague has taken over and ruined everything.
My friends… well I currently don’t have any. It has been weeks since I have heard from my three supposed best friends. The time went so quickly because I was in a literal state of numbness. I don’t think they’d believe me anyway.
I have no interest in existing any longer.
I do not want to be here.
If I deserved punishment for something that I did wrong, I would have expected to receive something a little less torturous. Because, that’s the only way I can describe this feeling. I am being tortured every day and there is not one single Doctor, Specialist or Naturopath that can help me. They don’t have the slightest clue.

I know I am going to die.
I can feel it.
I see the signs.
If Death doesn’t take me, I will do the job myself.
A body just doesn’t… shut down like this, without anyone knowing why.
If this is my last entry, then so be it. I will be thankful for all of the enjoyment I got prior to being sick. I’ll be happy for the brief moment I was in my dream job, the love I felt and was given, I’ll be happy that I spent some wonderful moments with my family and my friends… back then.
If this is my last entry, then I just want to make it known that I am happy to die. I welcome the feeling. You do not scare me, Death.
I am happy to leave, because if this is what was destined for my life, I don’t want it.”

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?

Strawberry Fields Adventuring.

Hello, my beautiful readers.
How are we all feeling this week?

I apologise for these long absences. I keep having lengthy flare ups, and my recent one was a neurological one. I have been suffering awful migraines from my neck pain; so awful that my vision began blurring, I had this consistent brain fog and full force dizziness that left me with horrible nausea that I could not get rid of. Upon visiting my sweet Doctor for the fifth time, his worry had me sent me for yet another MRI. When my results (obviously) came back as negative yet again and I was a blubbering pained mess in his office, crying that I could not go on another day with these symptoms, he said, “Cass, I suggest that you take the time to go away for a few days, and allow yourself to really relax and be loved. It gives me time to clear my head, and time for you to clear yours”.
(I will be writing a post on the be loved part very shortly, as he took me by surprise).

I explained to my Doctor that I would probably not feel much better “clearing my mind” when it was my body that was plagued by the unknown disease.
Yes, I was/am stressed.
I was stressed about money, my options, the future and my everlasting symptoms, and I was sick to death of the people in my life not caring anymore. I was tired of explaining the same story to them.
I didn’t want to be shoved aside by yet another Doctor and told to “take a holiday”, “think positively”, and “relax”.

Which leads me to my little spontaneous getaway – yes, I managed to get away with my best friend for a few nights to a beach two hours from here.
I was incredibly ill on the night we arrived, and I felt so disheartened to know that I could potentially have a continual flare up whilst I was up there.
Who knew that a two hour car ride would be so exhausting?!
BUT by some miracle, I awoke the next day and felt incredible… the best I have felt in a very long time.
I took advantage of this feeling and managed to tick off a goal from My Living List, whilst enjoying some incredibly tasty meals and dessert, a nature walk (whilst linking arms with my best friend, BUT nonetheless a walking achievement!), a visit to a tranquil spa retreat on a mountain and, a beautiful quiet moment at a secret beach.

I (naturally) awoke the next day with sore limbs, a very upset stomach and pain, but I can look back to this one day and remember how happy I was to be living.

I thought that I would share some photos of my big-adventure-day-of-good-health, with you.

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Sneaky mid-strawberry-bite.

 

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Fields, and fields of these beautiful berries!

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Enjoying my tub of strawberries.

 

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The beach that we were not allowed to walk on…

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The mountain of spas surrounded by nature.

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My favourite dessert (which I haven’t had since I first became ill) – creme brûlée

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A secret beach that we literally stumbled across (no editing to this photo!)

Sorry for the short post; I promise to write more next week.
I hope that my little adventure brought a smile to your face, and I really hope that you write your own Living List; because you never quite know when you will receive a moment of good health to achieve and explore!

Love and hugs,

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!

I Would Now Like To Feel Nothing.

I can’t sit here tonight and write an inspirational post about how things get better when you have Chronic Pain and Chronic Illness –
that your health journey is comprised of supportive Doctors and Specialists, positive thoughts, and constant love and concern from family and friends – not when I know in my heart that it would be a lie.

Just today.

Today, in this very moment, anything uplifting that I potentially write would be a massive lie.

Because,
in all honesty,
I would like nothing more than to leave this world ever so quietly tonight,
and judging by the severity of my symptoms this week,
I don’t think that anything anyone could say would convince me otherwise.

I just have to sit here and go through the exhausting motions of every single symptom,
stress,
thought and feeling,
even though I’d very much like to feel nothing.