Will we ever catch up?

In life, it's quite difficult to be completely objective, because no matter how hard we try it is near impossible to detach ourselves from things that impact our lives. When we browse magazines we think about whether we like or dislike the dress or shoes, when we see pictures of travel we immediately link it to our adventures &/or whether it's on the bucket list or not, novels we imagine how the story might unfold if we were the novelist or a character. Be in a fleeting thought, an opinion or an action, most people automatically make a link and indirectly or not, relate ourselves & our situation. For me, TV series & movies are no different. 

I have been watching a great series called Oprhan Black which is a sci-fi thriller I guess. It is interesting, fast paced and has got me thinking, but also feeling a bit frustrated. Essentially, it is a story about humans clones and loosely explores the science about their creation and existence. I know this is fictional and I'm aware my imagination has strayed far from the storyline, but the fact cloning humans is not unimaginable has left me wondering where I stand in this world of modern science and medicine.

 

If you think how big of a feat cloning would be, and that it has already happened with Dolly the sheep, and god knows what else, I find it almost incomprehensible that there is not more that can be done for my illness or anyone else's for that matter. How is it that we are so far advanced in some aspects of science, yet so many people continue to live their lives struggling and suffering without a cure or even ease of access to treatments?  Does this seem as frustrating and ludicrous to you as it does me? 

I feel like the difficulty today with medical science is there are so many areas and conditions and illnesses that need attention, research and funding to improve the outcome that it is impossible to get to all of these. There is also all of this undiscovered and constantly evolving science, like cloning, that holds a place for future generation which we cannot ignore. Foremost, the life threatening conditions are where I believe science should be focused on, but in an ideal world it would be great to see the life altering illnesses get some research and interest too. 

As someone with a stubborn personality and having more than one life altering condition, I am always looking for the next piece of the unknown puzzle. I wait to read the next medical journal or research to be released because they could offer me something new, but truthfully the wait is long and slow and often not groundbreaking. There just isn't enough time, money, manpower and research to go around and it is nothing less than a real shame.

So whilst I binge on my new favourite fictitious TV show about clones and overthink everything in my nerdy way, I can't help wonder how and when will humans ever catch up with medical science to a point where there are solutions and answers to human medical mysteries. Probably just a distant dream or fantasy, but then it was probably just a dream to clone something too...

POP goes the...

At times I feel like I am in bubble wrap. Tucked in and nestled beneath the protective layer it provides to prevent me from breaking and keep me out of harms way. Some people are willing to give me a go and pop the bubbles layer by layer, while others are so scared at the thought of me breaking or the unknown response they dare not try. They cover me up and wrap me like a precious gift and make sure I am safe, which is nice... but the thing is, I don't always want to be safe. I want to have the option to choose whether to be safe or not. 

I have always aspired to be to a caring, compassionate & trustworthy person, with one of my biggest enjoyments being helping people, be it physically, emotionally or in another supportive manner. Before becoming unwell I tried to be there for my friends and family, I was approachable, and I had no bubble wrap. I was free to choose when and in what capacity I could be there and there were no assumptions or fears of my ability to cope or requirements of protection. I felt needed. 

Over the last few years there have been many long periods where I have been physically & emotionally incapable of helping anyone, in any capacity. But in amongst these difficult times and more recently, I feel like it's time to let everyone know, I am here. 

I am well aware that people surrounding me choose to bubble wrap me out of kindness and thoughtfulness in an attempt not to trouble me with whatever is going on and I am so grateful for the compassion everyone continues to show. Yet on the other hand, I sometimes feel a bit dissapointed that I am not privy to these decisions surrounding my coping abilities and I feel sad that I have not had the opportunity to help people I care about in their times of need.

Dealing with medical & health related stuff has sadly become the majority of my life and daily routines but I am still the same person, not just my illnesses. Yes I have struggles in my life, but so does everyone else! And just like them, I continue to want to keep updated on real life events and the important things in the lives of everyone I love. I don't want to be placed in bubble wrap because it is no better for me and I am no better for it. 

Chronic illness doesn't go away overnight or even over years so I've got to roll with the punches and keep living to the best of my ability. I would think I would speak for some other chronic illness sufferers when I say that we want to be there for you. I want to be there for you.
I want to celebrate and commiserate with you, I want to hear about your bad haircut or stupid boss, I want to know how your family or children or partner is. I get excited to hear you excel in your career or studies, I love hearing about your crazy nights out or mischief. Ofcourse at times I feel a little jealous of your wonderful news, but that does not mean for one second that I am any less happy for you or grateful that you shared your stories with me. It just means I've got to work harder to get what I want and that in the meantime I will enjoy living vicariously through you, hoping for better days.
I want people to trust in me that if I cannot handle what is going on, that I will inform them I need some bubble wrapping. Stat! 

I want the choice & autonomy to make decisions about whether I can handle the privilege of your thoughts and feelings. I want to live again and this is a big piece of my life I want back - to be helpful and to be there for anyone that needs like so many have been for me. 

So I ask anyone reading this, anytime you have some news (good or bad) that you think you would share with me but are unsure, don't think about my bubble wrapping...pop it, rip it off, talk to me.

Let me try to be the wonderful friend you have been to me. I am different in many ways, BUT I am also very much the same. 

xoxo

Cautiously Optimistic

It's lovely when you can see progress.

It's not something that we've seen continuously for the past 5 years but it's something I am lucky and grateful to be experiencing more often now. And it feels great!!

For a long time I have been idoling along and putting in the work with only small results, only to be knocked back to square one Every time. But, for the first time ever I think I am going to be OK.

I can't really say exactly why I believe things will be different this time, I just do.

With this feeling of cautious optimism and happiness comes feelings of nervousness that I might do something wrong or my body might fail me again and land me in hospital for months. 

I have tried so hard since becoming ill to keep looking forward. At times it has not been possible to keep this state of optimism and it has been a real struggle to stay focused and maintain a somewhat positive outlook, but I have tried. Each time I have been knocked back they have been such cruel & viscous robberies of the life I was looking forward to. Each time I've had to rebuild my faith that things will improve and that there will be better days ahead. This recent long admission was no exception, with losing a dream of mine and facing one of my biggest disappointments & losses to date. 

Now though, I feel like something has changed. I am on a nice but slow path of improvement thanks to my treatments & I just feel 'hope'. I still feel nervous about the future but I also feel more hopeful that life might just keep getting better. I am not disillusioned, I do know that my condition is unpredictable & that no matter how determined I am, my body has proven to show no mercy. I am not expecting miracles or a magical cure, I'm simply enjoying the calm right now. I am aware, I am wary but I am also excited at the prospect. A prospect that I haven't really had in a while.

I've got mountains to climb before I am independent & even a semi-functional human being, but the mountains aren't looking so far away right now, so I'll embrace this panorama and enjoy the comfort it brings.

xoxo

The unwanted anniversary

Sometimes I wonder if there is some weird,  Higher allocation system or if it's plain bad luck that I landed here in this hot mess of chronic illness...

Today marks a bitter & unpleasant day. It was this date in 2010 that I was first admitted to hospital with crazy symptoms & no idea what was going on. I had no idea that I would then not leave the hospital for over 3years, instead remain unwell & stuck inside the four walls of hospital trying to get function and my life back.

If someone had told me that this day was going to be the start of my long & very difficult health journey I would've laughed & not thought this possible. Weeks before I was playing netball, flying interstate for 21st bdays & studying to become a doctor...there was no way things could go so drastically wrong so fast.
How wrong I was!!

Here I am now years on and still battling each day to better myself & rebuild a life I want to live . I'm definitely not one to say that I'm happy this has happened to me, as I do not appreciate this life lesson and would've been 110% fine without this experience.  However, I have definitely learnt much about myself & my surroundings throughout this. I have also met some amazing people & been humbled by those who have stood up to support me during my toughest times, & so for those aspects I am grateful.

So this day marks a new year on my journey & another year I vow to try my hardest to keep fighting and stay focused on my goals. I have already spent some months in hospital this year but I pray that there will be no long admissions in my future. My condition will never go away, but I have faith that there has to be more for me than where I'm at now. Quitting is not an option - regaining the life I want to live is the only priority. 💪

Stuff you broken body!!! Thief.

"Grief is in two parts. The first is loss. The second is the remaking of life."

Loss is one of the hardest things to deal with in life. It something that can tear you up and change the Person you are. When you've got a chronic illness, loss is inevitable and loss is always present but the depth of the loss is what defines each situation.

Just like every human being, I have felt loss both recently & in my life prior to illness and either way, it hurts. Be it loss surrounding an animal, a friend, a death, distance, or even a change in career - it all hurts to some degree and it is an uncomfortable sensation. What does loss feel like to you?  The feeling that you can't move without braking or that you're suffocated by your despair, the feeling you get in your stomach when you're about to drop a glass of wine on the carpet, or even the welling up of tears held back waiting to release at the slightest provocation. These are all familiar feelings to me when I experience loss, but it is the degree to which I feel the loss that has the greatest impact on me holistically.

Being chronically ill over the last few years I have experienced a different kind of loss than before. I never realised how much loss could be felt over things that I would previously not had a second thought about. How naive I was. How aware I am now. For that I am both thankful and saddened.

When your body and mind are healthy life just rolls on without a care. The daily tasks like cleaning your teeth, getting dressed and going to work or study are taken for granted. I took these things for granted before I got sick and these were stolen from beneath me.

There were things I used to think nothing of, or infact, things I used to wish away as annoyances or incidentals, that are now so much more meaningful to me. I never thought I would think twice about the movements & position of sitting up, yet ironically it has been the bane of my existence the last 5 years. I do not recall once in my prior 22years of healthy life thinking to myself 'how grateful I am to be able to sit up,' yet it is something I have felt deep loss over the last 5 years. 

The small but seemingly large things like; sitting at a dinner table with family or friends, sitting upright to eat meals so you can digest properly, sitting to study or write, sitting to travel in a standard vehicle, sitting to have coffe with friends or a drink, or being able to sit in the standard seated sections to enjoy a show at a concert or movie theatre, or even just purely sitting because that's what we as humans do. These are all things I can no longer do and things that have at some point crossed my mind and wished I could still do or do again. These are some things I have lost. 

Loss is cruel.

If I think more broadly I could go on forever about things I have felt a sense of loss over, but mostly they come down to the physical limitations which have resulted in me being unable to do, or be apart of important things. The most emotional losses I have had thanks to stupid chronic illness include things like missing being part of & attending my cousins and some of my best friends' weddings  and missing my grandmothers funeral. Those were 2 things that meant so much to me and will stick in my mind eternally as massive voids. When I reflect on these voids, those two examples seem far more of a typical human loss than the others I face as a result of my illnesses like; the ability to walk, sit or stand or even the ability to at times feed myself or even eat food or do my hair...Gosh the list could go on.

Today however I am grieving the loss of one of my biggest hopes and dreams. My dream to continue my university medical studies and eventually work within the medical field as a doctor. This loss seems different to other things as it is not something I had accomplished and miss, rather something I have so dearly strived for and aspired to and now, lost. This week I had to medically withdraw from my degree in Medicine. To say I am shattered and devastated is a huge understatement. 

All I feel right now is an overwhelming sense of sadness and loss. I am grieving the loss of what I pictured as my future career, happiness and one of my goals. I feel ripped off that this illness has been able to steal this from me. I feel frustrated that there were no options left unturned. I feel drained after 5 long years of hope and desire. I feel devastated and I feel lost. And I feel betrayed by my own body - I think that hurts the most. 

It's only very early days so I'm deeply upset. It's hard being upset in a public setting such as a hospital room but I have no choice right now which adds another dimension to the situation. I am experiencing such a different "me" as a result of this loss, so things like tears of sadness and darker days than before are my usual, and I think that's ok for now.

I know how I'm feeling right now, but I have been pondering some thoughts since this new reality. 

I'm wondering about how do I & will I cope with all of this??

And is there a certain way I should be dealing with this experience of loss?

Truthfully, I don't have any idea of how I should be acting, feeling or behaving and that uncertainty scares me a little but also frees me to do what I need to, to get over this hurdle. I don't follow a specific method or steps, so I guess for now my way of coping with this upsetting time is that I'll blast my ipod, attempt some mindfulness, I'll have my cry, shed I my tears, feel my sadness and hopefully ride this grief and sense of loss out. 

I know it's not going to feel like this forever but right now, in this moment, I want nothing more than to scream out F U AAG & POTS! I did not deserve this hand and I did not deserve this whole broken body. I have done everything in my power to cling to my dream and strive to beat this monster of an illness. 

Today I lost this heart breaking battle but tomorrow I hope to win the bigger picture and reclaim my life and health as I choose it. 

#StuffYouLife

#OnwardsAndUpwards

Cases of the loud, bossy, clueless obnoxious powder puffing girls

Having mystery people in your house is hard. By mystery I mean the Carer & Nurses that turn up daily to help me. I am super grateful to have this help at home because without it I would not be able to have the privilege of living with my family and could face one of my biggest fears since early on, which is the possibility of living in nursing home setting. Ugh. Thankfully I have an amazing family who wouldn't let this happen and for that I am blessed.

There's a lot of things I wondered upon coming home and having nurses around. Things like

how the nurses/carers would fit in

how we would interact and get along

how they would work as individuals and with each other.

And so much more...

So much wonder and hope for something so unknown and new to me. Now though, after being home for a few months on& off I feel I have some understanding of how this home nursing care goes.   Well mine anyway! When I was preparing to come home after my first extremely long hospital stay my social worker, my nursing coordinator and I interviewed a number of nursing care companies in my area. I took this seriously because I needed to feel comfortable that I could trust the company and that they would care for me & my medical requirements in a professional and appropriate manner. You wouldn't believe the vast levels of competency between people claiming to have the same skills. It was quite daunting, until finally I came across my current company where I felt safe and decided it was a good decision to go with them. 

Since then I've had Nurses and also carers come and go. Some great and some absolutely disgusting. I've had beautiful people come along and join me in supporting me through this journey. I've had some lovely ladies offer help and assistance beyond their scope of work and really care for me and I've had some not so lovely people walk into my life and shock me with their views and experiences. These people have all helped me to a certain degree and I am thankful for that.

There have been many outrageous & funny things that have happened or that carers have said or done over time and so e I still remain in shock from. I thought I'd give you a glimpse into a small sample of the top funny/bizarre things that have happened with my nurses & carers at home. 
Here goooessss..........

New staff 1. This lady came in and the first thing I thought was LOUD. She was determined not to let anyone overcome her or steal the spotlight. It was crazy! On the first day I ever had nurses in my house she came in like she was a pro. Within the space of 2hrs she had told me

- my room was not organised enough for her liking

- my care plan was not what she envisaged

- that she knew everything about my condition because Wikipedia is highly accurate

- told me I needed to get rid of my bedroom carpet as it wasn't "quite right darling".

- told to buy some crazy fancy garbage bag dispenser rather than the poor darling open my wardrobe and reach in to get a bag

- told me I needed a better straw dispenser (I am still wondering what she means??)

Little did I know this was Nurse 1's first day Ever of caring in the home and she had no prior experience expect for her certificates. Needless to say she did not return after a few more shifts like
that.

New Staff 2. This was my first impression of someone I was told was very qualified and experienced.  My mind went whaaaaaatt?????

Lady walks in wearing gum boots and long horse riding jodpers with a nice high collared checkered shirt. Age, maybe 60ish. Very much a country girl which is fine by me. All is fine. Until she looked at my hoist sling lifter and opened her mouth with the words "hmmm, so what do we call this device" . Ummm huh!?!?! That is like nursing caring manual handling 101!!! How is this in anyway an experienced professional. The Carer company admin lady still claimed she was experienced. Maybe in horse riding or farming sure, but nursing or caring was far from her expertise!

New Staff 3. A young lady arrives in her 30's and seems very normal and neat which is always nice. Less than 30mins into the shift she is helping me with personal care and says 

something along the lines of 'oh wow I didn't realise we had to actually do stuff. I was thinking it was cups of tea and daytime tv, I'm a beautician. I don't know anything about caring, I'm sorry I'm a little

overwhelmed.' **facepalm** It was so bizarre to me that this woman seemed to think that only older people needed care and when I say care, she means cups of tea and reminiscing on the old days.

New Staff 4. Middle aged woman arrives for the night shift. My first time meeting her isn't to bad and she seems nice. After another 20 minutes or more listening to her babble and waiting for her to start actually helping me the story gets good. We are talking, actually she is talking and she starts to tell me about her family and her son that's my age. Turns out he is a really, really good person and kind and caring and....in jail. He ofcourse didn't deserve to be in jail (according to her) because the police chased him on a big car chase around the city and when they got to him he had no choice to pull out his knife on them. Also, the marajuana found in his car was NOT his! Poor guy - definitely innocent! 
Nurse 4 then continues to tell me the bike gang are after her for her mobile tattoo business. Despite
her stories she was a nice lady.

New Staff 5. This lady was not a bad person, infact she was generally nice and sensible. She was a bit of a slow worker but she gets there eventually. A unique trait of hers is that she is the most self  noted skilled person I have ever met. She is a doctor, a nurse, a physiotherapist, an OT, an artist, a painter, a rebel, an engineer, a safety officer, a fashion designer, a hair dresser, a vet, a counsellor and the most moral and ethical person on this planet. Everyday was a life lesson and there was never a time without something being known or solved by the expert.

New Staff 6. I like to think of this one as powder puff. Except not the cute little powder puffs we are all accustomed to. 

Think outside the box for a second. Ok? Actually she is a powder puffer through and through. This lady arrived wreaking of smoke with huge messy hair, long fingernails and generally poorly presented. Most distinct feature was that her eyes were like saucepans and she was high as a 
kite. Infact, higher than any kite I've flown!! She then proceeds to inform me throughout the shift that she is just 'here for some petty cash' because she has to return to the USA where her partner is in jail and gets released soon after 3years. Further to this starts rambling about how she hates "those locked psych wards as they limit her freedom and suck" at least the last 2 times she's been forced to stay on them. OMG -&$:?#^]>? is all I was thinking!! She was legit off her face on drugs and bouncing off the walls. It was creepy, alarming and bizarre. If I had left a $5 note on the bench I think it's safe to say it probably wouldn't have been there at the end. What a sticky fingered powder puff she was!! Pffft! 

 

Now this list could go on for a lot longer than you can imagine but the joyous people above stand out in my memory right now. As you can see, people are from all walks of life and agendas. Amongst the crazies & challenges,  I currently have a nice group of nurses and carers who do a wonderful job with me. I am so grateful for their help and kindness. 

You can never really imagine or understand what it's like to have people you don't know and don't necessarily choose in your house and your world everyday, multiple times a day for hours on end. It is really confronting at first for both parties. It is a huge trust game as these people I have no connection to venture in to my parents home and see their valuables and lifestyle without any choice. To be able to continue to live comfortably adjustments have to take place immediately and over time, having 'strangers' or employees becomes the new normal. It is hard for everyone but it something that we have no other alternative so we make it work.

xoxo

Goodbye 2014

The new year is here!!! And so is renewed hope!

When I reflect on the year that has been I've had some highs and many lows, and I survived. We all did. And how exciting is it to have a fresh chapter in our life book to rethink things, discover, prosper, & continue to hope and plan for the time ahead?!?!!!

When I look back on my 2014 experiences I do get a little saddened to think of what has been lost once again. At the new year of 2014 I had great plans to start over and get my health into a better state and most of all stay out of hospital. This didn't go as planned with another 8 month admission as an inpatient. This admission was tough but also hope filled. I had sepsis twice, septic shock once, my family were called to come in to the hospital because I was seriously ill, aseptic meningitis, cellulitis, PICC lines, port-a-caths, infections++ , countless loss of consciousness each day, injections, blood antibodies and plasma tranfusions of ivig and much more. It has been gruelling and tough for myself, my family and my medical team. But I feel we may have turned a corner.

With a new treatment approved to treat my nasty diagnosis things are looking better for the first time since i became unwell in 2010. When I started this year I was slowly climbing my improvement ladder until I got acutely unwell which then spiralled downwards and out of control. My Doctors predicted I would not be ready for discharge until November 2014, but this time I showed them and was discharged in August. Since then I have fought to continue to improve and make the most of this winning streak. These last few months I have been very unwell again but we have managed to pull through each time and not encounter any long inpatient stays, which is a huge win in my eyes.

This Christmas  and New Years were special. It was a beautiful yet quiet Christmas at home with my mum, dad and brother. Sadly for us, both my sisters are off around the world in Europe & Cambodia so we missed them dearly. This was the 2nd Christmas that I have been totally out of hospital since 2010. We had a delicious lunch and I somehow managed to sleep both before and after the food...pre-food coma maybe?? It was so nice to be home and spend the day how we wanted to which was low key and relaxing. 

New Years Eve was also so good. For the first time we went to watch the 9pm fireworks on the foreshore closest to our house. Mum packed us a picnic dinner & I stayed lying down most of the day so that I could last sitting in my chair for a few hours which worked well. It was a serene and family friendly environment. It was so easy which is something I never say these days. We watched the fireworks, my favourite oroton scarf got caught onto a sparkler spark and burnt a hole in it which sucked and then we went home & I was in bed by midnight to watch the Sydney fireworks display.

The year of 2014 was not easy. Everything came with a battle and left me exhausted and down. But as anyone else would, I picked myself up and kept pushing. I kept pushing because I deserve better and I am a determined brat. Now, looking at the last few months, my pushing won. I am physically the best I've been since 2010. I can sit for a few minutes unsupported, I'm doing more for myself everyday and I am pushing the boundaries with my family, physio's and OT in rehabilitation. 

I've got a lot of hope for this year. I'm not one to write a list or plan out dates/times but I do have an overall idea of how I'd like this year to go.

I want to stay out of hospital.

I want to eat healthy

I want to improve my health

I want to improved my physical abilities

I want to reduce my loss of consciousness 

I want to reduce my symptoms

I want to reduce some medications

I want to write my blog more regularly

And 

I want to start living again.

Although I'm sad that I lost most of my 2014 to poor health and recovery, it has also opened the door to improvement in my function with the new treatment. I don't expect things to be perfect and they probably won't be easy but 2015 I'm ready for you!!!! 

Operation 'Get My Life Back' continues...now!!!!!!!

Happy new year everyone!!!! 

xoxo