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.

Sneaky mid-strawberry-bite.

 

Fields, and fields of these beautiful berries!

Enjoying my tub of strawberries.

 

The beach that we were not allowed to walk on…

The mountain of spas surrounded by nature.

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

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!

Having a Bad Day?

I know exactly what the bad days feel like.
You are most likely curled up in bed, or on the floor, not knowing how to get up and face the world.
You are longing for someone to remind you that you are worthy of this life, that you mean something.
You want it all to end…

Here are a few of my personal favourite posts that might get you through that bad day and make you realise your importance:

You are NOT your Illness

Defining Normal

You: Your Worst Critic

Letter To Myself

The Truth is Hard to Face

Invisible Illness Progress Portraits

love and hugs,
C xo

Please, don’t touch me.

Everything my Specialists put into me, makes me very, very sick. I make progress, tiny progress, but then lose it all when they come up with another crazy drug trial.
And each time they are become more and more convinced that it will help me.
Because they are desperate to fix the unknown case that is me.

They have this stupid “we have to try everything” approach, but by everything that means every drug on the market, and they refuse to believe that maybe my body needs a moment to rest.

Almost a year of digestive medication after digestive medication, pain killers, antidepressants, antianxiety medication, supplements and now steroids.

I have not slept in five nights, am in excruciating stomach pain and have constant nausea and dizziness.
Symptoms that I was finally gaining control over.
I was eating meals independently, and am now eating zero. Bye-bye to my weight gain and positive thinking.

What if the answer is very simple?
What if I just need a month or two medication free to see how my body adjusts? I do not remember the last time I was drugfree, how sad.
How do you tell multiple Specialists that you do not want to be poked, prodded, used as a guinea pig anymore?

I do not want to be touched, in fear of you breaking me.

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.

Overwhelmed.

The feeling I get when I receive emails like this from my readers, is quite overwhelming.
How can my little Australian rants about illness, sadness and life touch so many of you?

When I am having a horrible day of symptoms,
when I feel like I have nobody in my corner helping me fight,
you remind me that I am far from alone.

(I have asked permission from both readers for this to be published)

Thank you for bringing joy to my darker days.
Just another reminder that we are not alone.

it isn’t fair.

Sometimes you just have to turn off your phone,
lock yourself in a dark room,
shove headphones in your ears,
and cry your fucking eyes out.

Scream every lyric to every heart ballad you can find,
because life really sucks,
and you were dealt a shit deck of cards,
and it isn’t fair, it isn’t fair.

TLC.

Indisposed and Undiagnosed has quietly had an overnight renovation.
We now have a cute little logo, and a site that is much easier to navigate your way through.
To experience the full effect of the changes, please take a peek on a laptop or computer!

I would like to thank my followers for your endless support and love.
I have received many emails (through my current darkest of times) describing me to be the voice for those who are unheard, hurting and also lost in illness of all kinds.

A Chronic Illness blog must shine a light on the positives and negatives.
In order to spread awareness, we must share an accurate account of our good and bad ordeals. They may be terrifying to write and read, they may also be incredibly depressing, but they are spreading awareness.

We are here, we are fighting, we are waiting, we want to be heard.

I am appreciative of your concern over my wellbeing, every comment I receive, every email I read.
I hope you continue to follow me on my journey.

May there be brighter days ahead for all of us

C, x

We Found Something… Oh Wait, It’s Nothing.

When you have spent what feels like a lifetime searching for answers, you would know exactly what I mean by Results Day almost always being a let down.

You walk into the appointment with more fatigue, than hope.
Occasionally the Doctor surprises you with a “we found something!“, but that Something just turns out to be your body playing a trick on you.
That Something will disappear on the followup test, or it won’t be as bad as they initially thought.
The Something actually turns out to be one giant Nothing, and you fall back to square one.
All of the excitement your Doctor just experienced, turns into a “You might want to consider seeing a Psychologist”

I’ve done it before.
I have walked out of appointments, swearing I will never return, never have another test, never have another soul-draining conversation with a Doctor or Specialist.
But you and I also know that as much as we despise it, we go on because we have to.
We will always choose health over being unhealthy.
We will always want that one answer, that one management strategy, that one medication that keeps are symptoms at bay.

So, we do have hope.
But our little piece of hope is sealed in a box,
inside a giant vault,
buried in the ground,
with cement covering it.

It is the last piece we have left.
If we can’t get to it, it won’t break, but we know it is still there… hidden.

I have not heard “news” about my health in months. It was a diagnosis of a rare stomach condition, and then a lot of confusion as to why I was not responding to medication, and why my symptoms worsened rather than eased. I was told that there would be no more tests, that we had to learn to manage the unmanagable.

And all of this time I sat there thinking, you have missed something.

Well it turns out that they did miss something.

My recent bloodwork from last week showed an increase in my Amylase (Pancreas Levels). My levels had not been normal since July 2014.
I was tested four times from then until now, and they slowly rose from a normal rate of 50, to 88, to 110, and now at 125.
But nobody pointed it out, and I am unsure of why.
The top of the sheet says “abnormal” in big, bold letters.
Not hard to notice, darling.

As I am petite, don’t drink, don’t smoke, eat incredibly healthy, apparently the “we better keep an eye on this” should have begun around the 88 point mark which was last year when I was recovering from the Shingles Virus.

I worry that Doctors are becoming lazier with patients of Chronic Illness.
We request more tests, and maybe they honestly believe that it is “all in our minds” so they just take a quick glance over our results, instead of being more thorough.

So, it’s off for another Ultrasound and a Gastroscopy this weekend to get to the bottom of this Something they have found. My Doctor explained briefly that IF my Pancreas is inflamed, it could be causing my usual Gastroparesis symptoms to flare. Apparently Pancreas problems also cause nausea, stomach cramping, trouble digesting and pain.

Nobody predicts the Pancreas.

But if I’m being entirely honest, I doubt it is something as simple as my Pancreas being inflamed. It sounds too… easy. I don’t want to get too excited, because if I do and am let down, I fear that it may be the end of my sanity.

But here’s hoping that this Something is actually a Something.

For a moment.

I surprised myself today by pausing my anger and sadness, to find something to smile over.

My best friend, (the male who has seen me during my darkest moments), knew of my rough time, so he took me to one of my favourite places of serenity. I begged him to let me stay home. The nausea was overpowering, and I had a cramping, upset stomach that didn’t want to be fed today. But he wouldn’t take no for an answer.
“You need to get out of that house,” were his words, followed by his usual, “and if you vomit, you can vomit on me. I don’t care” (thoughtful).

It is Winter here, so the air was ice cold and I shook like a leaf, but there was a beautiful blue sky coloured with white clouds and a light from the hiding sun that was just slightly warm.

I cannot tell you how wonderful it was to be surrounded by complete silence for a moment.
I even managed to walk through the sand, without someone to hold onto.
I stared at the granules, and the many footprints that marked it.
I dipped my toes into the water, which was probably not a great idea in Winter with a crappy quality immunity like mine.
I wondered who had walked the beach before I, and what they thought about as they looked out to sea.
I wondered how many felt as lost as I did.

I took in a deep breath, eyes closed, and felt my anxiety subside. My chest pain eased.

When I opened my eyes, I was faced with a little girl, no older than three. She was wrapped tightly in a pink raincoat, with a matching beanie, and was running through the sand holding a giant piece of seaweed. “I’m going to throw it on you, Mumma!” and she ran ahead with the brightest smile I have ever seen.

And, I smiled.
The first in months of pain and sadness – this little stranger made me smile.
And of course, he took a photo.

I had forgotten how happy I was when I worked with children.
I smiled nonstop, every single day.
I had forgotten what it was like to smile.

Now being back at home, behind my four walls, I can’t say that I feel as happy as earlier.
My usual state returned when I stepped foot off of the sand and onto concrete.
The heaviness in my chest,
the sadness,
the nausea,
the pain,
the reminder that I am still sick with trouble managing symptoms and darkened thoughts.

But, what I can say is that I so desperately wanted to take my own life yesterday, and if I had of, I would have missed this moment.