Chronic Illness Awareness

Need the help of my followers (:

Hello lovely people,

I apologise for my absence.
Things are crazy at the moment. I have gone from having minimal appointments, to suddenly having three to four a week! I now see two Gastroenterologists, am back seeing my Exercise Physiologist, Acupuncturist, Vestibular Physiotherapist through the Melbourne Dizzy Day Clinic, and my team leaders at the “Illness” Employment Agency. I was supposed to see the Physiotherapist through the Chronic Pain Clinic, but have had no time been well enough to attend!
Between my appointments I have had nasty flares of my nerve pain, and stomach. Once I get one thing settled, the other plays up! Haha, the story of my life.

My “small” kindness project has also brought back worldwide positive feedback, so I am super excited (but equally exhausted) from organising it all!

I’ve popped in today to announce that I have had multiple requests on how to donate, and have set up a “fundraising” page for anyone interested.

The “Be Kind To One Another Boxes” is a project in which I am funding the international shipping of ten full boxes of gifts (donated from multiple, worldwide, generous companies) to ten sufferers of Chronic Illness.

I decided to use my own savings to start this campaign with ten boxes, but word has quickly spread and now I have a room full of I N C R E D I B L E donations and kind-hearted humans wanting to assist in the funding of additional boxes.

If you are in a financial position where you can donate any amount of money – it will go towards the shipping of one FULL box of gifts to a stranger suffering from a Chronic Illness. I am aiming for $300AUD which will pay for an additional eight boxes.

If you would like to help out, please check out the Fundraising Page for more details. There you can also read a bit about my health journey, and how I came up with this Kindness Project.

A few of the wonderful companies who have already donated a considerable amount of product are:
MECCA Cosmetics
Breath Pearls
HASK Hair
HURRAW! Lip Balm
Pukka Tea

EVERY donation counts, whether smaller or larger! And all money is going to a really good cause.

Social media SHARES would be greatly appreciated!

The more awareness spread, means the more boxes I can mail, which means the more members of this very special community get a surprise box in the mail to brighten their day!

This is primarily an Instagram Project, so if you would like to nominate someone to go into the draw to receive a box, details can be found on my page.

C, xo

http://www.youcaring.com/bekindtooneanotherboxes 

http://www.instagram.com/indisposedandundiagnosed

 

NEW PROJECT ANNOUNCEMENT!

Super excited to share that I am working with some incredible companies, and generous humans, to create a limited number of goodie-filled boxes for a few lucky members of the Chronically Ill Community.

I am funding the international shipping costs, and packaging, of these boxes entirely out of my own savings account, so there is NO payment required from you.

I have always wanted to do this project, as I know how lonely Chronic Illness can be. Many of us are left unable to work, unable to go to the grocery store and unable to spoil ourselves. Many of us do not have the luxury of paying for anything beyond medical appointments and bills.

The project’s ONLY aim is to send love and happiness to those who need it most.

I am in the process of collecting donations for the boxes for the whole of September and early October; aiming to have them packed and mailed in late October/early November.

I am aiming for ten initial boxes to be mailed worldwide, but this will depend on the amount of donations received. We already have close to fifteen larger companies donating a decent amount of product and samples such as soy candles, handmade jewellery, handmade comforters, hair masks, makeup and stationary.

If you are the owner of a company who have samples to spare, or you are a generous human who would like to donate any products – please send me an email with the headline “DONATIONS” to discuss.
(Note: All companies and donators will be personally thanked for their contributions in a Social Media Post)

If you have $15-$30 to spare, and would like to help, you would be able to contribute to the overseas mailing of one full box, and the chance to brighten the day of a stranger.
Please contact me for more information.

Do YOU know someone in Chronically Ill Community who:
– are in need of a cheer-up
– have performed a selfless act in spite of their own struggles
– have helped you through a rough time

Complete an act of kindness and nominate them to go into the DRAW to receive one of our limited number of boxes.

This event is primarily based on Instagram, so if you would like to participate or see the incredible product filling these boxes, then please make an account today and come follow us!

BUT considering that you have all supported me through the toughest of times and pushed me over the 1000+ follower mark, I will be accepting nominations from my blog followers who do not have an Instagram Account.

All you have to do is:
– follow the blog
email me at indisposedandundiagnosed@hotmail.com
with the headlineNOMINATION
– include the first (or full name) of the person you’d like to nominate, their country of residence and a social media url so that I can find, and contact, them if they win!
– also include WHY you are nominating them!

If you have an Instagram Account, then please personal message me the details above!

I am incredibly excited about this project, and humbled by the amount of love and positive feedback I have already received from people in the Chronic Illness Community and companies worldwide.

But, now I need your help finding the perfect well-deserving recipients of these boxes!

Love always,

C xo

In Loving Memory.

*IMPORTANT POST*

It is through tears and sadness that I write this post tonight.

I received some devastating news, and have spent my past two days in a complete state of shock. I have gone to write this so many times, but I just don’t know what to say.

Back in Childcare, I became very close to a mother from Spain, as I taught her firstborn. She was my first friend at that centre, and her family became more like family to me.
When I fell ill in late 2014, she also fell ill to similar symptoms as I. I resigned, and we both spent time searching for answers and keeping in close contact. We forever spoke about how tough it was finding support for something that nobody understood, and how challenging it was to be told to “think positively” repeatedly when we were suffering in silence. We both understood each other on a level that not many others can relate to; a level that you would understand quite well if you too are ill. She gave her full support for this blog, and for that I am so thankful.

It has been close to two years since I last worked with her son, and saw her face-to-face. We spoke every few weeks and shared health, children and life updates, and I was only catching up on her photos with the children a few days ago, when I found out the horrible news.

I can’t even say it, because I don’t want to believe it.

I know that this message must be shared, but I wish every second that it was not with my friend as the example.

I find myself grieving for the loss of a friend, and grieving for a husband and two younger children who are without a wife and mother from this day forth.

I cannot stress the following enough:

Chronic Illness, whether mental, physical or combined, is an incredibly difficult journey. The uncertainty is terrifying, the tests are invasive, the symptoms are debilitating. It is a burden, it is lifechanging, it is exhausting, it is lonely, it is depressing…
But please, please don’t let it become a death sentence.
Do not let the overwhelming darkness of Chronic Illness kill you.

Your parents, your extended family, your children, your friends, your colleagues; I guarantee that one or more of these love you and care about your wellbeing.
I, a complete stranger, care about your wellbeing.
You might have mistaken their silence for being rude or uncaring, but they most likely have NO knowledge of your inner thoughts and pain. You must take the step to reach out. Reach out to anyone.
Please, do not battle in silence.
There are loved ones, Psychologists, Doctors and Counsellors who are here to listen to you, to help you.

In memory of my dear friend, I ask three simple things of you tonight:

1) Reach out to your loved ones tonight and simply, LOVE them.
Put aside all anger, all stress and just tell your loved ones how much they mean to you, please.

2) If you know of someone going through hardship, or haven’t spoken to someone in a while, I encourage you to reach out and ask them the simple question, “How are you?”
This simple sentence packs a powerful punch.
Mental health is real,
Suicide is real,
and with these three words, you might start the conversation that saves someone’s life

3) Please share this post in loving memory of my friend, and to spread awareness for those battling Suicidal Thoughts who might not think that they have a reason to live tonight –
You DO.

Finally, to my dear friend A,

I am having a hard time accepting that this is goodbye.
I still find myself going to message you. I want to speak to you just one last time.
I don’t want to believe that this is how our journey ends.
You were a unique soul and the most incredible mother to those beautiful boys. I mean that. You were an even better wife and a genuine, loving friend.

I am holding close to my heart all of the wonderful memories I shared with you and your family. I remember the day that we met, and knowing that our friendship would last a life time. I loved my job for children and families like yours.
I clearly remember cuddles with little one and nicknaming him a Koala-bear as he glued himself to my chest; I remember the Christmas Decorations you handmade me (which I still have on my tree each year); I remember becoming so sidetracked with chatting at work, that I’d think you were one of my colleagues as you’d be sitting with me and the children at story time; and I remember your complete support when I first fell ill.
You offered numerous times to care for me, and to have relaxing “girl” days at your house. You sent me photos of the children’s birthdays, because you knew how heartbroken I was about having to leave my dream job. When you referred to me as your son’s second Mum, I was overwhelmed at how close we had all become – that we were now family.

Each night, you would tell me about all of the wonderful adventures you had planned for the children at home; that you always kept them busy with cooking, decorating, creative activities. You were adventurous, accepting, and kind beyond words.
I was in awe of you.

I went home wishing that all parents loved like you and your husband did.
I wished that every child I would teach in the future, was like yours.

You were destined to be a nurse and mother. It was your natural instinct to care for others before yourself, and I wish you could have seen how great you would have been.

I feel absolutely sick to my stomach that we will never get to have that girl’s night that we planned for so long.
I hope you know how special you were to so many people.
I know in my heart that you were strong. This does not at all show any sign of weakness, or define you. I know that you were suffering, and for that, I am so sorry.
I can’t stop crying, A.
I hope that you are reading this somewhere, and know how much of an impact you made on my life. I know that you will continue to guide the little one’s on their path through life, and you have my word that I will be there for them too. I will remind them of how incredible you were.

We will meet again one day, and we will have that girl’s night we planned, I promise.

I hope you are painfree now, sweetheart.
You will be missed terribly, and loved always.

Until we meet again, Rest In Peace X

If you are, or you know of someone, dealing with Suicidal Thoughts, Depression or general hardship, please locate a Suicide Hotline or Chatsite in your given country of residence:
http://www.suicide.org/international-suicide-hotlines.html

 

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

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.

Just One of Those Days.

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

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

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

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

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

Lessons in Loss.

image1

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

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

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

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

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

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

Living was a struggle.

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

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

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

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

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

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

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

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

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

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

There are other ways.

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

And, I am still here.

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

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

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

I own this body, not my illness.

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

And, so do you.