Gastroparesis

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.

Let Me Publish Your Story.

Help me, help you, and ultimately help others!

Due to an influx of new bloggers writing about their Chronic Illnesses, loneliness and the lack of guidance and support along their journey, I have created a new segment called ILLNESS ARMY.
Under this tab, I would like there to be numerous Chronic Illness categories with YOUR stories.
I want to connect you with the right people.
I want you to make friends and support each other.
I want your voices to be heard, so we can make it known that Chronic Illness of any kind is not pleasant.

I feel as though I can only support as my much as my knowledge and experience allows me to… so, I am requesting YOUR assistance.

I am in search of honest writing.
As you are writing, you must think about the person reading your post.
If they are newly diagnosed with what you have, how would you prepare them?
How can you support others?

I am looking for new, or old posts, but there are a few guidelines, so please read carefully:
Maximum 1000w per post

Posts can be copied and pasted into an email, or sent as a word document.
You can also email me a link to a pre-written post on your site if it meets the criteria.

ONE entry PER email.

Once emailed, changes to posts CANNOT be made.

Your post MUST fall into ONE major category.
(Please go and have a look at our current dropdown list under Illness Army, on our homepage. If your illness is not there, please attach the name in your email and I will add it to the list)
I understand that many of you will fit into MULTIPLE categories, but please choose ONE that best suits your submitted post, or one will be chosen for you.
I have chosen to select this way as I want sufferers to be linked to the appropriate people for support. If there is a sufferer of Gastroparesis searching for guidance, they will most likely not find it by being in the POTS section).

This MUST be filled out and emailed along with your entry:
Your Name:
Your Email:
Your Blog URL:
Title of Post:
Your Chronic Illness (for the category):
Three Sentences About Yourself or your blog:

Please do not interpret this as a sign off from me. I will still continue to write my own posts about my journey and experiences, directed at a collective audience.
As I am doing this project solo, I will aim to post two of your stories per week (if my health holds up).

If your post meets the criteria, and is chosen to be published, you will receive an email notification.

If you aren’t following me already, then please start today!
Let’s start sharing this post so we can begin uniting sufferers!

You may begin sending your entries via my CONTACT page, or alternatively at indisposedandundiagnosed@hotmail.com
with the subject line “ILLNESS ARMY SUBMISSION”

I am really looking forward to reading your stories.
I think this is a step in the right direction for spreading awareness about our community.

C, xo.

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

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.

Theories of Love.

A conversation between my Doctor and I:
Him: “You need to allow yourself to relax and be loved. Do you understand what I mean?”
Me: “I cannot relax. I am losing my memory, my vision and ability to think, and…”
Him: “Be loved. Relax and be loved. Do you understand that?”
Me: “Sex?”
Him: “I meant more of a massage by…”
Me: “Oh, I’m seeing my Acupuncturist this week and he can massage out my…”
Him: “No, stop. More intimate than that. To feel another’s touch, to walk and hold hands, to feel the person you used to be”
Me: “How, when all I know is the person that I am now?”
Him: “Look up the 5 Love Languages and take the test. Find out where you fit and then allow yourself to be loved. Illness has consumed your ability to feel, so try and not think about the illness. Think about your feelings”
Me: “Is this some positive-thinking-and-you’ll-feel-better-crap?”
Him: “No, trust me”

As noted in one of my previous posts, my Doctor requested that I take a trip away and allow myself to “relax entirely and be loved”. He was ripping his hair out too; hence the ‘break’ that we desperately needed to come back cleansed and start over.
My Doctor and I have become very well acquainted. He knows that I have been struggling financially, am ripping my hair out over my new neurological symptoms and have just had my heart absolutely pulverised by the Polish Meat Beater.

I have felt heartache before, but nothing like this.
I am naturally a carer, a lover, a giver. I gave all of myself to this creature who I thought was perfect, and he stripped me down and made me feel worthless. He was my best friend, and we had history, a spark like no other. It was a build up over many years, and when we were finally each other’s I had never felt happiness or contentment quite like it. We spoke every day. We shared secrets. We knew each other better than anyone else.

Everything was perfect, until it wasn’t.

I was called a Peasant, and he brought my family into the picture also referring to them as ‘lower grade’ after they welcomed him with open arms. I was suddenly unintelligent, that I would amount to nothing in my life and that nobody could ever love me with this illness. Coming from the guy who I thought was my true love, I was beyond devastated – anyway, lets get back to the story.

I left my Doctor’s room mostly confused, and slightly irritated.
I had loved perfectly fine before, but the illness had not helped.
It’s incredibly hard to have a relationship with someone and be sick.
I grew to realise that a partner will always feel the need to tread carefully around you in case you snap, which you will.

It’s a vicious cycle of anger, love, anger, love, and it’s not at all your fault;
Hold me, no don’t touch me.
Kiss me, no I feel nauseous.
WHY DIDN’T YOU HUG ME?! No I’m in so much pain.
I want pasta, no I want salad, no wait I want nothing.
I don’t know how to feel, why don’t you love me?

After my episode with the Polish Meat Beater, I felt defeated.
I didn’t want to hold hands with anyone, or ‘feel another person’s touch’. I was quite happy to never have sex again and isolate myself from the male gene entirely, and then it hit me like a tonne of bricks. I had built up a pretty high wall to protect myself, and all of the energy I spent on loving others… loving him, was now spent on my illness. I was on a constant speed to ‘get better’; take this medication, take another one, eat and eat until hopefully my stomach will just give in and let me have peace, go to this appointment, book that appointment, who else do I see?
My day was solely made up of illness crap.

So, I went home and researched the Five Love Languages that my Doctor spoke of.
I usually don’t buy into stuff like this, but what I found was incredibly intriguing and it actually… made sense.

A man by the name of Gary Chapman wrote a book in 1995 suggesting that Love was made up of five parts, in which he called the Five Love Languages; gifts, quality time, words of affirmation, acts of service and intimacy.
We each have one primary and secondary preferred Language in which we preach. He makes it known that these Five Love Languages exhaust each human, and that we cannot be truly at peace with our partner or ourselves unless they match or meet our primary Love Language.
For example, one male partner may believe that gifts are of importance to show love, yet the female believes that intimacy is more of an importance. An automatic roadblock has been created, because whilst the male partner is waiting for gifts to be received, the female partner is waiting for intimacy. Okay, so the male partner buys the female woman a gift – the female would prefer intimacy. In order to love wholeheartedly, an ideal partner would have to understand how you need to be loved.

In order to truly discover your Love Languages, one must “observe the way that they express Love to others, and analyse what they complain about and request the most”.

We use all Five Love Languages in our every day lives, some more than others. We mostly use them when we are hurt, emotional and for apologies.
The books summarises that a person will naturally give Love the way they wish to receive it, and if two partners are on different wave-lengths, they will usually have more difficulty within their relationships. Chapman does make it very clear that this theory does not mean that two different Love Language Partners are not a ‘match’. The theory just suggests that until you both exercise the idea of each other’s true wants and needs, you will not love fully.

If you are anything like me, and you have barricaded yourself behind a wall of cement, or maybe you and your partner are going through some communication difficulty, this test is a great step in the right direction of understanding Love. Once you are aware of what you need, you will be better connected to yourself, your current partner, and more cautious when choosing a future partner.

It also made me think about my illness. My Illness has changed the way I love, and want to be loved. My results would have been very different if I took the test a year ago, because I was unappreciative and saw life in a different light. I realised that it doesn’t matter if I am sick – I can still be loved.

My results left me with a sense of empowerment. I felt as though I regained immediate control of how I want to be Loved. I will now be extremely cautious of who I share my heart with. Love is a deep connection, and we each deserve to feel it, but after taking this test I want to feel it the right way. Don’t be with someone who cannot meet your needs and makes you feel unimportant.

I want to be loved entirely.

I am eager to purchase the entire novel, as the website only gives you a snippet of the material.
Society summarises Love as one feeling; you either feel it or you don’t. Well what if some do not know how to feel it?
This post has taught me is that Love is made up of many different levels, and that there are many ways to Love. It is not as simple as just loving.

If my post hasn’t convinced you, just take ten minutes out of your day to take the test. It’s definitely a breath of fresh air from focusing on my symptoms.
Don’t overthink the questions. Some of them will definitely play on your thoughts. Just be natural; the first thing that comes to your mind.

Enjoy,

C, xo

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.