The truth about positivity

When someone asks about your day or your life what do you say? Do you give them a short concise answer or a long one? Are you truthful or do you mix it up a bit? 

For me and all people I guess, it depends on who we are speaking with and what we are willing to share. Something I've learnt since becoming unwell is that most people don't actually want to know the truth. They just want a positive, concise and simple answer. They want easy, so most of the time that's what they get. 

I think in many ways I've been on autopilot the last few years when people have asked me how I am. I almost always say "good" or "plodding along nicely," even when this couldn't have been further from the truth. Sometimes I say this for me and more often than not, I say it because that's what people want to hear. Most people don't want to know the tough reality of my limited life. The tears, the loss, the heartache, the grief, the physical and mental struggle, all of it - my reality.

I've found this really difficult at times because as much as I know the answer the majority of people want and need to hear, I want to tell the truth. The truth that it's not all roses and smiles. It's not always a story of courage or bravery. And it's certainly not a case of constant positivity and my own panacea. It's rough, it's tough it's raw and it's my life.

Yes I try to stay positive or at least put on a positive facade for the most part, but when people say to me "I don't know how you stay so positive" or "you're so positive I could never be like that" what they don't realise is I have no choice. No choice but to try. If I told the real truth of my family and I's last 5-6years I think people would be stunned and also scared and maybe even disinterested, who knows?! I don't think the majority would honestly want the truth, as it's not an easy reality to deal with and it's not pretty. There aren't parties and shopping or drinks and social comforts. It's just a story of an all consuming battle to win the war against my broken body.  

In saying this though, I do believe positive energy promotes a healthier outcome so I do try to stay positive. Celebrate the tiny victories and enjoy the simple pleasures I once took for granted. I do have good times and my life is not all doom and gloom. I try to find the happy and positive in difficult times and I think this tactic has got me through some of my darkest days.
But like all of us, there are times when I just can't. Times when I need to tell my truth just as much as others need a sugarcoated version. It is a constant battle in my mind when people ask how I am.  I feel like there is this belief that if your condition is chronic and you don't appear to be fighting it daily and remaining 'positive', you are seen to not be trying or whinging and succumbing to the illness.  It 
is that thought petrifies me. As much as it shouldn't mean anything to me, I do care what others think and it is especially important to me that my family and close friends know I have not, and will not stop trying. 

When the going gets difficult for anyone or if you just feel plain crappy, it should be ok to say how you're feeling. It should be ok to have days where the world isn't all smiles and lollipops and this shouldn't have to be hidden. Sick, healthy, tired, or indifferent we all have a right to speak the truth of how we are feeling to ourselves and to others. I don't mean live in a constant state of negativity as I feel that's a useless and tiring option, but I think we all need to remember it's ok not to be positive 24/7. It doesn't mean we aren't hopeful or are negative, it just means in that moment things don't feel so great.
I have trouble some days seeing any positives but I still believe we should all try to celebrate the smaller things in life as they are worthy of celebration. Small recovery victories or non-eventful days should  be reason to smile, not wait in fear of the next bad day or event.

Many people who have been very kind and dear to me throughout this whole process I don't hesitate
to speak my reality positive or not, but the majority of the beautiful caring
people in my life whom are supportive and kind I don't always know what to answer. Each time I subconsciously weigh up the situation and what is best, and more often than not, the best thing I can do is to answer simply with

 "I'm fine" 

"I'm doing really well and things are great"

Sometimes words of truth, sometimes a necessary lie. 

Positivity is not a constant state for anyone, so why do we expect it from all of us, both sick and well?

xoxo

Like a hoarder on steroids

Travel and preparing to travel is not a simple task anymore. 

I've never been the lightest packer but now there are even more necessities to pack, I have no choice but to pack like a hoarder on steroids. It's embarrassing! 🙈

But the exciting part in all of this is that recently I actually got to pack to go stay somewhere other than the hospital. Fun times!! 

I have a list saved in my iPad of everything I need to take for hospital admissions and I have perfected it down to the smallest details so I don't forget anything. It's a pretty exhausting and boring list but the good thing is I don't need to pack the medical supplies stuff or medications, as they're supplied by the hospital. When going anywhere else, I have recently discovered there is a lot more to packing and preparation involved in moving my little life. 

For a less than 24hour period of time away from home it took days of planning. 

Writing lists of what to take

Organising medical supplies to take with us

Organising enough medications and enough 'as needed' medications for unexpected or increased symptoms

Calling the accomodation ahead to let them know my physical disabilities/requirements

Organising the appropriate room with disabled access for my wheelchair

Making sure that the equipment I need will be available at the location

Checking on parking so we don't have to go far when we arrive sick from travel

Making sure that we are located close to the place I am going 

Double checking I haven't forgotten anything

Triple checking I haven't forgotten anything 

And so much more.

It's actually quite exhausting and honestly a bit overwhelming. I had a fast, fleeting but very enjoyable time away for my night and I'm so glad I got to do it thanks to my muma bear for taking me. We had no real mishaps and things went as smoothly as possible, which was really positive and gives me hope that one day, these little trips won't be such a big ordeal for me and my family in the future. 

For now though, things like this trip are the ultimate luxury and something I am quite proud of achieving. To stay anywhere but in the hospital or in my fully equipped home with all my bits and pieces is something that was far beyond an achievable reach until now. The reality is it is probably a long way from becoming a regular occurrence but knowing I could do it makes all the difference to my outlook. Although it takes time, planning and meticulous examination of details, it brings me one tiny step closer to living a semi-normal life. 

A far cry from 2009

Yesterday I had an important appointment with my neurologist whom I see regularly and is a vital part of my team for over 6 years now. The thing about this particular appointment is that the hospital is located right next door to where I used to live. Prior to illness I had some of the best 3 years living in college at my university, about 20metres from the hospital. I am so glad that I had this opportunity to live there and to look back on, especially yesterday.

I have been to this hospital many many times but for some reason or another, yesterday felt different. Maybe because I was outside longer than my usual whisk in and out of the hospital or that I was not on an ambulance stretcher or some other unknown reason but it really got me. It is a strange feeling looking back on my life when everything has changed so much. I would never have imagined being at the old stomping ground in a wheelchair or on an ambulance stretcher. I would never have imagined that I would spend years after college returning to its doorstep yet being in an entirely different capacity. 

Epifony is the wrong word, but yesterday really cemented just how different my new life is. It has me mourning the loss of my old life. The little things like the many late nights strolling back to bed after parties, the early morning car trips to my uni campus, saying hello and seeing mostly all familiar faces in the street, going to the gym, wandering home from the local pub 'the gross', thai & other delicious foods, looking out my windows people watching, parties, cocktails and more parties. It was so much fun and something I took for granted at the time. I miss this. All of it. 

As I reflect on my situation and the life I lived pre-illness, it is amazing to see how all of these adventures and pastimes have changed.

Alcohol has been replaced by water to maintain blood volume to increase my blood pressure and stay conscious.

Thai & other authentic foods replaced with simple foods that won't upset my stomach & intestines due to my gastric nerves not working properly.

Strolls along the road now replaced by hours in my wheelchair trying desperately to regain physical function.

Familiar faces have changed and now consist of the nurses, doctors, allied health and hospital staff I see often in the corridors.

Cocktails are no longer fruity and delicious, replaced by huge amounts of tablets & other medications each day.

My gym is now that of my rehabilitation unit, where it feels like my second home.

Parties are now few and far between and my usual evenings consist of nurses coming to my home to help with all my nighttime requirements and being at home with my family.

So much change. So different. So unimaginable. 

But amongst missing all of my old life, I do really appreciate the life I have. I will never be one to say that I'm grateful for this illness and conditions or 'everything happens for a reason', as I flat out don't agree, but I do think that my family, friends and support systems have done a great job at helping me make the most of this life, given my current situation.

Even though my reminiscent adventures are replaced by less desirable alternatives right now it's not all doom and gloom. It's always about perspectives & how you choose to view situations. For me, 

 My medications have made me appreciate how intricate and fickle the human body can be and have helped me to survive and be as healthy and safe as possible whilst my body fails me.

My rehabilitation is continuing to allow my desire and dreams of better days to be possible, because I have the opportunity to continue rehabilitation and I have people who believe in me and want me to succeed. I have help when I need it and guidance when I am unsure, I have a second family. 

My home nurses allow me to live at home with my family and be cared for when my family cannot, potentially saving me from residential housing or huge familial burden.

My parties may not be raging or late nights but the time I get to spend with my family every night are irreplaceable and worth more than any old party. 

Yes I miss my old life, but crying about it 24/7 isn't going to bring it back. Hell, I do cry about my situation and I feel sad that things turned out this way. I have days that feel like they don't warrant the hassle and times when I am so disappointed in my body, but I also know that if I stay in the realm of sadness it will do no good. 

Just got to roll with what I've got.

So to my pre-illness life and the good old days, I miss you SO very much. Thankyou for the experiences I had and the fun times I will never forget. To my new life, you're not perfect but we will just keep working on bettering you...

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. 💪