Where’s home?

Today I went to my house. The house I lived in with my husband and son and cat before March 2020.

Its been a while since I have lived there full-time

While waiting for my double lung transplant I live at my parents in a large room with a bed, tv, desk, my computer and some belongings I bought across with me.

They have made it comfortable for me and they help me immensely – but its not home. Its my childhood home, but not my home.

Mum and Dad are able to take me to appointments and look after as I struggle health wise.

I go to the address on my licence most weekends.

Most people assume that I go home on the weekend to my actual house and I’m in heaven, they assume I love my own house, all the things I left behind, all the memories, my old life before I became unwell.

I thought I would miss the house

I thought I would miss my things

I’ve changed since I went into heart failure in March 2020 and had to process needing a double lung transplant

I’ve had to change, I have changed. You cant go through all that I’ve been through and stay the same.

I don’t need all the things in the house

The memories make me sad because I want to be “her” again, the version of myself I left there the day I was rushed to hospital. Actually I don’t want to be her ever again.

I just wan’t my energy back. I wan’t my independence back.

The house makes me feel anxious, its filled with things I left that I thought I needed, projects I didn’t finish because I thought I wanted to do them “some-day”, books piled that the new me doesn’t want to read. Cook books with recipes I thought I would make one day, photographs of me before all this happened…. and so much “stuff”

The stuff stares at me when I’m there, making me feel trapped and suffocated when I’m there. It makes me feel like I need to be her again and I don’t want to be

She was so busy pleasing people, she didn’t realise she was so unhappy

I look at items of furniture I never liked but purchased calling it compromise.

I look at the layout and the vibe, its not me. It doesn’t feel like MY home.

Maybe things will change after the transplant and I’ll feel different…. maybe they wont. Maybe they never will.

Today I sit here typing this post as a different version of myself.

I want less “stuff” and more “calmness”

I want minimal furniture, minimal plates and cups and pots and pans, minimal clothing. My body is screaming for simplicity.

“Simplicity!! Less is more!!”

Simplicity though isn’t just with “things”, its also with relationships, lifestyle, goals, freedom with your time, your commitments, your obligations. Less to do and think about. Less to clean and organise. Less maintenance and more time for things that I love.

While I wait for this transplant – I commit to simplifying my life.

I commit to being true to myself and not being someone I can’t and don’t want to be

Whatever does’t bring me peace, must go.

Until next time, make it a great day.

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Don’t Miss the Call

I officially went on the transplant list for double lungs on the 4th of September.

At first, I was anxious. I would go to bed each night and whisper in the dark – “Please don’t get the call tonight! I’m not ready.”

Fear of receiving the call for such a massive operation is overwhelming.

Some nights I would lay awake and think until early hours of the morning, or fall asleep crying, tears running into my hair as I lay on the pillow praying that I would miraculously repair my heart and lungs and not need to go through this anymore.

Its October. I know it hasn’t been long….. but the journey since March 2020 has felt like AGES! I have been unwell for the longest time and its taking a toll.

Some people get the call after a few days and some many, many months later

I often wonder, how will my story go?

Am I one of the ones that gets the call during the day with time to take a shower before I leave? Or will I be called early hours of the morning and told to hurry?

I have a different prayer now days, when I go to bed each night. I want the call. Please God, let my lungs be next.

But then I remember someone has to die for me to get them and I wish the person with the lungs I’m going to receive, more time. I send them love and hope that they are ok and making their life right before they pass.

I’ve been idle since March 2020. My ability to move has decreased and I get breathless easily. I’m reliant on assistance for so much.

I think I’m at the point where I just want to start another chapter, but cant.

I cant move forward with some major changes I want to make – because I need energy, I need to be able to breathe. I need my independence back.

Sadly though, I’m going to be even more reliant on people around me before I get my independence back. This alone has been a very difficult thing to digest, accept. Tears are streaming as I type this part of the post. I hate needing people. I really hate it.

Its not ego. Trust me – I’ve done lots of reflection on that. Its transactional love that I struggle with. Needing help comes with conditions in some relationships, even from people that claim to love you the deepest.

Being reminded regularly of sacrifices people are making around me and some even taking over and treating me as incapable.

Its my lungs and heart that need help – not my parenting or ability to think for myself.

Some people have used this time that I’ve been vulnerable as the perfect opportunity to discuss what they don’t like about me. Or what I could of done better.

Some friends have stopped calling and texting and think that’s what I need right now. Alone time.

Some have avoided me because they don’t want to deal with it, it stresses them out and they will see me when its all over.

Before my heart failure, before the health decline.. I didn’t really need a lot of help. I was always out and about, juggling work and life. My load wasn’t light either. But I managed to catch up with people, I did random acts of kindness. I was involved in causes and made each day count.

I wore many hats and played many roles.

Now days, I’m sitting in a body that cant do a whole lot.

Don’t get me wrong, I don’t miss the part of my life where I was running around like a headless chicken. I didn’t listen to my body much, I kept punching on.

Some days, like today –

I miss being able to get into a car and drive wherever my heart desired. I miss being able to walk without oxygen and needing a wheel chair and someone to push me.

I miss deciding my dinners and where I was taking my son after school.

I miss meeting up with friends and having coffee or dinners.

I miss waking up and not feeling like Im ready for bed again.

The list goes on.

So, this post took a different turn to where I was headed when I started out. Let me get back to what I wanted to say originally.

While waiting on the transplant list, I’m always looking at my phone making sure I don’t miss the call.

Waiting for a transplant has so many mixed feelings attached to it.

Accepting that someone has to die for you to live.

Being shit scared of the operation, but knowing you need it

Making sure you’re in a position at all times to get to the hospital when the call comes through.

Possibly having my son with me at the time of the call, I need to make sure I have somewhere safe to leave him. Making sure someone is cuddling him. Knowing he is being loved while I cant be there. Someone to reassure him that its all going to be ok. Not project their fears onto him at his most fragile moment.

Then there is the question – Am I one of the lucky ones that get to come out alive? Will I be OK? Or is this my goodbye?

Once again the list goes on with all the things one needs to consider when on the list.

To anyone out there on the list. What ever the organ you are waiting for. I send you love, wherever you are.

I understand. I get it.

Sending you strength, courage, and patience

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Getting new lungs

I didn’t know where to start with this post.

I didn’t know how to get a heap of emotions, advice, information in one post.

It all began when….

I went to the supermarket one Sunday, pushed a trolley heaped with groceries as normal…but this time I began to black out, legs turned to jelly, loss of eye site momentarily. I experienced something I hadn’t before.

I managed to compose myself and slowly pushed the trolley to a seat.

I called my husband to come help asap and I sat on a shopping centre chair sobbing. I knew something bad was happening to my body. People were staring, some asked if I needed help, but I couldn’t stop sobbing.

For weeks I had a pain in my back and trouble breathing. I thought I had a chill and slept with heat packs and smeared muscle cream all over myself.

I couldn’t sleep laying flat and each day I lost more and more energy. I was loosing appetite and I was bitter. Tired and bitter.

Despite COVID and my attempt to avoid going to the hospital – I ended up in Emergency in April, after 3 days in bed and gasping for breath going to the toilet.

I discovered I was in right heart failure.

My lungs don’t work the best, even on full-time oxygen….and my heart is pumping away each day working its ass off.

Until it couldn’t successfully anymore.

I spent five weeks in hospital processing the news that I was dying and fast.

Heart failure, liver failing, lungs not working anymore.

Tranplant talk, urgent tests, new medications trialled. Side effects to deal with.

It was chaos.

The only language I spoke for weeks were tears. Lots and lots of tears.

I’m now on heart medication. A 24/7 IV drip that comes around with me in a bum bag/fanny pack. Veletri is the name.

I’ve been working away for months on getting so many tests done to qualify to be on a transplant list for double lungs. I never knew how many tests are involved.

Amongst the tests, Ive had so many days in bed unable to breathe or move fully, many hospital admissions and so many emotions and stages to work through.

I’m officially on the transplant waiting list.

So, any minute, a call could come through telling me that lungs with the same blood type and dimensions are waiting for me.

That someone died, but before they died – they left them for someone like me.

I always wonder – where will I be when that call comes?

In bed asleep? At a doctors appointment? Eating dinner?

I could write about the heart failure and how I haven’t been able to breathe properly since April. I could write about the way it feels to sit in a body that wont work and think “Oh My God! If this gets worse, Im screwed!”

I could write about how I didn’t see it coming even though I have been struggling since October 2019.

I could go more into detail about the medications and the Pulmonary Hypertension medication Im taking through a drip. The fluid tablets or the reflux medication.

I could write about the days where I cant keep my eyes open and lay in bed thinking, but unable to move.

I could write about the emotions and the hard work I have had to do to go from DEVASTATED about needing a transplant – to accepting and embracing the life that I could have with new lungs.

I could tell you all about the surgery I will under-go and how I will be on life support for approx 3 days. The details the surgeon told me in depth so I could sign a consent form.

I could tell you all about the fact that I may not survive.

I could write about the life changes that have taken place and the loss of independece Ive had over the last 6 months. How showering is now an exhausting and long process – I sit on my bed in a towel for half an hour waiting to breathe better before I attempt to get dressed.

I could even write about the hospital admissions, the people Ive met, the people that didn’t make it, the nurses who have touched my life and the Doctors that have delivered news that rattled me.

I could write about COVID and how being this ill during this time has been a challenge.

I could tell you about the fear that creeps up when Im alone at night with my own thoughts and how I pray and speak to Angels and whisper pleas for help in the dark.

I could tell you about the transplant success stories I read and how much respect I have for Donors.

I could go through the NETFLIX shows I’ve hidden with and escaped life with.

I could run through the books I wanted to read and havent.

I could tell you about the bucket list that changes each day

I could tell you about the people that support me emotionally and the ones that ran

I could tell you about the lump that forms in my throat when I think about my son and how many events I will miss of his, if I don’t make it.

I could even go into the funeral arrangements I have contemplated making.

Instead, Im going to tell you this….

Lifes short. Tomorrow is not guaranteed. Happiness is not a destination.

When we sit, unable to move or breathe – Memories are the only thing we hold onto and future plans are what help us push through the hard days.

Until next time. Be kind to yourself and others.

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Don’t say the C Word

Around the world right now – we all have 1 thing in common.

The C word. We are all dealing with the unknown of the COVID-19 (Coronavirus)

Some countries have lost many, maybe even someone they know.

Stockpiling and hysteria is all over the news.

Some countries are watching, like me, from Australia – as the virus spreads slowly through our country. It’s like watching a glass of water with drops of food dye spreading – slowly turning the entire glass with the colour. We know it’s coming closer, and don’t know if we will experience it personally.

Its scary, its unsettling, its not fair and its effed up!It’s every emotion.

I was glued to the news daily, watching the death tolls rise, watching on my phone as I sit on my oxygen knowing full well that if I got it, I would be fuc*d. My Dr told me I would.

People calling and messaging me daily checking in to make sure I’m staying inside. Urging me to take it more seriously as I shared the funny memes and kept going – business as usual.

Then, it hit me. Fear pushed hope out of the way and put its pedal to the metal. Fear was speeding through my mind, making my thoughts scattered and my body go into panic mode. The reality that this is not a joke and the death toll is higher than I’ve ever seen in my lifetime.

So, the nightmares kicked in – I don’t have many nightmares.. so when I do, I know its all getting too much. I was waking up with a dry mouth and heart pounding.

Each ache and pain had me questioning if the Corona was upon me.

Off went the news, off went the C talk and I reminded myself – when have I ever listened to the Dr when they told me I was going to die? I needed to stay strong. I needed fear to sit the eff down and stay calm.

I needed to get out of my Pajamas and make a new normal.

I needed to accept the uncertainty and embrace the present moment, I am here and I am ok.

This week has been an unsettling week, but also an important week for me. Its been a week of appreciation for the things I took for granted. Simple things like toilet paper, popping into a store for a coffee. Meeting up with friends or visiting Mum and Dad. Taking my son to school to be with his friends. Going to work and having a load of work to get through.

In New South Wales, we aren’t in lock down like some other parts of the world. I have decided to work from home and stay away from shopping centers, crowds and build my immune system, I have my son logging into school from home. Reducing risk where possible.

I don’t have words of wisdom over here, I don’t have the cure, I don’t even have a quote that’s going to finish this blog post off and leave you feeling inspired and blown away.

What I do have, is a reminder.

We are all in this together.

Maybe the world needed a reminder that we all bleed the same. No one is better than anybody else. Death is death. Illness is Illness.

Stay safe friends, not sure who will see this post, but who ever you are, reading this at this very moment – be safe and remember, you are NOT alone.

Until next time, Make it a great day xo

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290220 – The Parable of the Fisherman and the Banker

I love this Parable, it reminds me to have the end in mind, because sometimes what we are wishing for, we already have.

The Parable of the Fisherman and the Banker

An American investment banker was taking a much-needed vacation in a small coastal Mexican village when a small boat with just one fisherman docked. The boat had several large, fresh fish in it.

The investment banker was impressed by the quality of the fish and asked the Mexican how long it took to catch them. The Mexican replied, “Only a little while.” The banker then asked why he didn’t stay out longer and catch more fish?

The Mexican fisherman replied he had enough to support his family’s immediate needs.

The American then asked “But what do you do with the rest of your time?”

The Mexican fisherman replied, “I sleep late, fish a little, play with my children, take siesta with my wife, stroll into the village each evening where I sip wine and play guitar with my amigos: I have a full and busy life, señor.”

The investment banker scoffed, “I am an Ivy League MBA, and I could help you. You could spend more time fishing and with the proceeds buy a bigger boat, and with the proceeds from the bigger boat you could buy several boats until eventually you would have a whole fleet of fishing boats. Instead of selling your catch to the middleman you could sell directly to the processor, eventually opening your own cannery. You could control the product, processing and distribution.”

Then he added, “Of course, you would need to leave this small coastal fishing village and move to Mexico City where you would run your growing enterprise.”

The Mexican fisherman asked, “But señor, how long will this all take?”

To which the American replied, “15-20 years.”

“But what then?” asked the Mexican.

The American laughed and said, “That’s the best part. When the time is right you would announce an IPO and sell your company stock to the public and become very rich. You could make millions.”

“Millions, señor? Then what?”

To which the investment banker replied, “Then you would retire. You could move to a small coastal fishing village where you would sleep late, fish a little, play with your kids, take siesta with your wife, stroll to the village in the evenings where you could sip wine and play your guitar with your amigos.”

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230120 – Waiting for Perfect

I haven’t written in a long time.

I often write blog posts in my head, I think of things I would love to share… but then I talk myself out of it.

Excuses creep in.

Insecurity creeps in.

I’m always waiting for perfect. The perfect moment, the perfect topic.

I tell myself that I need to be a better writer, I need a better laptop, I need more time to edit. The list of excuses go on.

I also worried in the past that I would be judged by what I write. or that I would attract keyboard warriors that will cut me down.

Well here I am, the 23rd of January 2020 – showing up and silencing the excuses. Embracing the insecurity and remembering that there has to be a day 1 someday.

Surrendering to the Imperfectly Perfect.

Hi!

So, what do I have to share today?

Its hot as ever today in Sydney Australia. Its 41 Degrees Celsius. Probably not going to help the current bush fire situation.

For someone with a breathing problem like myself, that is a stay inside day. So I’ve got the oxygen on and enjoying the air-con.

School for Sydney resumes next week. New year. My son will be in year 6! His last year of Primary school before high school. I’m going to enjoy every bit of the year.

It was my birthday 2 days ago. I had the day off work and enjoyed some time with people I love. I had breakfast with some cousins and aunties. Dinner with my parents, husband and son.

Whats it like where you are today?

Until next time. Make it a good day

Ange : )

 

 

Posted in On the Daily | Tagged , , , , , , | 2 Comments

Thanks Jen

It’s been a while since I last put anything on here.

Partly because I want to write only when my writing is perfect. (yet I don’t write often)

Partly because this space is meant to be a positive space that provides an “oxygen like” effect for the readers journey. (and some days I’m a little dry on positive)

Partly because I always think I have tomorrow or next week.

But today, I received an email from a lady I follow on Instagram, I signed up for her weekly newsletter a while back…  she wrote about how she was looking for a hobby and after a few options were considered, she was drawn to rowing. She loves it and her email beamed with positivity. I could hear it in her tone.

I read it, sat at my computer and had tears in my eyes. I was thrilled for her, yet sad for me.

Now, don’t get me wrong… I’m not looking at doing any rowing or sport of the sort – lets keep it real here, I’m on oxygen full-time and walking on the treadmill makes me tired.

Its not about a hobby. Its about doing something that makes me happy. As happy as Jen.

What the email asked were some really good questions that drew out the truth from me.

These are her questions –

What are you waiting to do? 

Do you know if you like to do things alone or with other people? 

Do you stop at the first obstacle? 

Is it time to try something intentionally new? FOR YOU?

The questions had me teary and confronted with reality.

There are things I want to do and don’t. I allow obstacles to stop me, I don’t take the time alone that I crave and want so badly.

Then Jens email proceeded with this –

I challenge you to do the thing. One little thing. Google it. Email someone. And take a little step.

You’re going to be dead soon and life will just go on without you, so, may as well make the most of your opportunity. NOW.

Until next we meet, keep being brave, keep showing up and keep sharing beautiful you.

That was the cherry on top with the emotions department.

Lets do things NOW!

Even Jen’s Quote of the weeks was on point…

“When a problem is disturbing you, don’t ask, “What should I do about it?” Ask, “What part of me is being disturbed by this?”.
Michael Singer

So here I am, checking in with who ever is reading this.

I love to write, I have a message to get out there and I’m starting again NOW!

Sending you some strength, courage, some positive vibes and the urge to get into something that brings you joy. Something that when you do it, you cant help but to smile and recharge yourself.

This is Jens website if you want to connect  Jens Website

Until next time

Ange x

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Why I deleted 150 blog posts

Well hello there! It’s been a while! I’ve missed the writing and keeping up with my readers also. I hope this blog finds you all well.

After almost 6 months (maybe more) of being inactive….A few weeks ago, I logged in and deleted approx 150 blogs. Years and years of writing. Moments shared, experiences, quotes, stories, links to all sorts of things, I think I even put my Pesto recipe on here at some point.

All…. gone……

I sat there for a good hour deleting each post and reminding myself that I was doing the right thing.

They weren’t backed up, not saved somewhere else just in case I was having a “WTF” moment and would regret it. Nope. All Deleted.

Why?!

Why the hell would someone do such a thing? Why would you delete years of master pieces that were edited and written with love? Slaved over and vulnerably posted – feeding the fear of rejection with each kind comment recieved from other writers.

Why would someone waste all that hard work? All that energy? All that TIME?!

It’s Simple really.

I’ve grown up. I’ve changed. I didn’t feel that the voice of “her” my 2015/2016 version of myself was like the 2018 version.

I’ve learnt so much more, I’ve read so much more.

My mission changed.

My goals changed.

It’s time to take a crisp white piece of paper and start new. Let me reintroduce myself as I begin blogging again.

If you’ve come across my blog for the first time, subscribe – it will be worth your while.

If you know me from before, I send you a big hello and look forward to sharing again.

Let me leave with a quote I love so much by Albert Einstein…..

“There are only two ways to live your life. One is as though nothing is a miracle. The other is as though EVERYTHING IS A MIRACLE”

Until next time… Make it a GREAT day!

Angela xo

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