Purpose

A wise man of eloquence once said that 'The purpose of life is to live a life of purpose'.

Well I think he is spot on.

I haven't had the best last month or so as I've been fighting some increased challenges with this faulty body but I think (and hope) that things have made a turn for the better and will continue on forwards. Over the last few years it has been a very rare, if not ever, have I had a month with something fun on every weekend. Well, this month that is changing and I am excited to have fun occasions nearly every weekend. To add to this, I have also just finished my second part time semester at university for the year. 

To say I'm a bit proud of that accomplishment is an understatement. 

I started Uni this year with much sadness and feeling a little apprehensive. At the beginning of this year I spent another long few months in hospital and was very unwell. As a result, I had to give up my place studying medicine and was forced to medically withdraw after years of fighting stay in it, which was devastating. Despite the deep sadness I felt, I knew I needed another focus and so had previously been looking into a Masters degree I liked the look of, so it was a logical choice to apply and try my luck. I wanted to have something other than health crap to focus on. I wanted to feel I had a greater purpose than just surviving each day, my health battles and watching Netflix and DVDs 24/7 (which I'm still guilty of). So I was accepted into my degree and the new journey began.

Throughout this year I have had many people say to me things along the line of 'don't worry about uni' and 'this isn't important' and 'who cares' and 'why are you doing this' but, to me, it has mattered a lot. To me it signifies so much more than just another degree. It may seem trivial and irrelevant from the outside and silly to focus on something aside from my health but it means more to me than I've probably shared with others. Obviously my health is my priority and my foremost goal. I still attend hospital and rehab 2+ days a week, have various appointments weekly, do my home therapy, exercise (within my limits) and work on improvements with my family and carers but it is so nice to have something else to do. To feel accountable for something that is more than just survival and getting by each day is really refreshing. It makes me feel a newfound sense of normality in doing something that hopefully will/could provide a future for myself and has me excited. I haven't loved every minute of my very part-time studies, but for the most part I'm enjoying the content and the feeling that it gives me to wake up and do something productive when I'm able.

 

Some days and weeks my body wins and all I can do is lay down and let the days pass by, but on the occasions I can do something I try my best to do it. I like that despite my future being so unknown and uncertain it gives me hope. I guess it's also like a hobby and distraction too which I can definitely do with. Escapism can be wonderful for the soul. So even though it was only 2-3 subjects, this year I started a new degree with a new hope of being able to just stay afloat. I have done just that and ended with awesome grades to top it off and I hope to do it all again next year.

Take that dysfunctional body!!! 🤗💪🏻✌🏻👌🏻.  Erika 1 - body 0 ...ok maybe not quite an accurate score but let me live in this moment 💁🏻

Meet my precious Pablo

Medical equipment is a pain in the butt! But given it's still Dysautonomia awareness month I thought I'd introduce you to one of my more hidden pieces of equipment that helps me get by.

His name is Pablo the power port and I keep him very close to my heart. Infact, he is actually in my heart (well the top of one chamber anyway). He is a central line and I love him! 

To give a very brief rundown, a portacath is a central line that is implanted under the skin in the upper chest which runs from a special septum into a catheter tunneled under the skin, going over the collar bone and then enters the large vein in the lower neck (the internal jugular vein) and then usually finishes in the superior vena cava. It appears as a small bump under the skin, and a small scar from the insertion. Most people probably wouldn't notice it's even there under clothes and it is quite discrete when not in use which I really like. 

I had to get a port or some form of central line because after years in hospital and countless blood tests, IV medications and treatments my veins have gone on a permanent holiday. They are completely useless, except for occasionally one little bugger in my index finger which can draw blood...but it's a pain and very unreliable too. It became too difficult to cannulate me and so we changed to PICC lines for a while, but I got sepsis from it so we decided on Pablo.

Yes it hurt, but the skill to place it =100%

I receive regular intravenous treatments so when we ran out of veins central access just made sense as the only logical step.  It is not a light decision to have a central line placed as it comes with huge and potentially life threatening consequences, of which I have experienced first hand. There are a few ongoing reasons that I needed Pablo in my life and they are all linked to my Dysautonomia. 

The most important reason I have a port is because I receive regular blood transfusions of plasma and antibodies in the form of IVIG, which stands for intravenous immunoglobulin. Each treatment I receive more than 5000 different peoples' antibodies which flood my own body and reduce it's ability to attack itself. This treatment is slowly but surely helping me regain some of my life and I couldn't be more grateful to the amazing blood donors, Red Cross and my amazing doctors who make this possible. We call it liquid gold in my house as it is so precious to me to have something that is finally allowing me to see some gradual improvements.
Another reason I have Pablo is because I receive IV fluids & electrolytes that increase my blood volume so that my body has more blood to circulate around which makes me feel a bit better. It is actually one of the most effective and common treatments used for POTS and Dysautonomia in general in America, and pretty much worldwide, but for whatever reasons, Australian healthcare makes it much more difficult to access (which I feel is ridiculous)! I am grateful to have some access to this, as the result of extra fluids pumped in intravenously for someone with my condition is that it increases the blood volume because the fluid enters directly into the bloodstream, which means I stay more hydrated and rather than the gut and tissues absorbing the oral intake or it being expelled, it helps to increase blood pressure and reduces tachycardia which feels reeealllllly nice! 

Finally, there are other things Pablo is used for are when I'm not well like receiving some medications and antibiotics etc etc.  Funnily enough, sometimes I, and others with central lines can actually taste the medicine that is injected into my bloodstream, which is both gross and weird. Crazy hey!! 

So as you can see, Pablo plays a very important role in my life and the great thing is he can stay in for many years to come as long as I don't get an infection or he causes me any problems. He is my secret weapon and one of my most important pieces of hidden equipment.  

Now, I decided to write this blog about my hidden friend as part of dysautonomia awareness month as I wanted to inform you that although my wheelchair and other bits and pieces may be obvious and not able to be easily hidden, they are definitely not the only things that keep me going. And I am certainly not alone in this situation.

Most people refer to Dysautonomia as an 'invisible illness' because many people can function and live their daily lives without obvious aids or equipment and appear seemingly 'normal' whilst often disguising their struggles. This invisibility should Not invalidate anyone's struggles. Something that this illness has definitely taught me is  that just because you can't see something, it certainly doesn't mean it's not there. 
They say that 1 in 3 people suffer from some form of chronic illness, which is quite amazing when you think about your circle of friends or family alone. That is a lot of people fighting and suffering in silence and discreteness. Too many people if you ask me. 
People everywhere around you are fighting battles you cannot see. Many people require different medical equipment and help in some form or another, that will be invisible to the naked eye. Dysautonomia is just one of many invisible illnesses.
 So I guess as Dysautonomia month is closing, this is my little reminder to you:

in any instance, just remember things are not always as they appear. Some people are fighting battles that we know nothing about.

Be kind. Be gentle. Be human. 

xoxo

The dirty "D" word that changed my life

This month is a very important month in my calander because October is Dysautonomia Awareness Month. This month is aimed to raise awareness and promote understanding and greater knowledge about a condition that has significantly changed my life since it began in 2010.

Because it is awareness month I thought I'd give a little run down on the symptoms myself and others with dysautonomia suffer on a daily basis. Whilst there is a significant range in disability and impact, there are many people fighting the good fight to kick some dysautonomia arse! 

I suffer from two forms of Dysautonomia, primarily Autoimmune Autonomic Ganglionopathy (AAG) and secondary to that, Postural Orthostatic Tachycardia Syndrome (POTS). Dysautonomia is an umbrella term for conditions which involve malfunctioning of the autonomic nervous system. There is involvement of both the sympathetic and parasympathetic systems, with 'automatic' functions of the body impaired. In my case, I have a very severe form of both, with no other known case of equal severity that we (my team) are aware of internationally...not a title I want to own, nor keep. 

So a bit about AAG.

AAG is a very rare condition, with limited research suggesting an incidence of 1 in 1 million. Basically AAG causes widespread dysfunction in all aspects of the autonomic nervous system, so things like blood pressure, heart rate, temperature regulation, breathing and many other 'automatic' functions don't work. Typical symptoms of AAG include, but are not limited to:

- severe orthostatic hypotension (very low blood pressure upon standing)
- fainting
- gastrointestinal dysmotility 

- urinary retention (neurogenic bladder)
- fixed and dilated pupils 

- dry mouth 

- dry eyes

For me, I live with all of the above symptoms to varying degrees depending on the day. Some days are managable  while others are really challenging which makes this illness very unpredictable and difficult to live with. I pass out/faint and loose consciousness after a maximum of 7 minutes in unsupported sitting (which is a HUGE improvement), my eyes need treatment multiple times per day for dryness, my mouth is an eternal desert, I have a bladder that has failed and ongoing GI dysmotility and symptoms. Other symptoms I experience are neuropathic pain, muscle weakness, deconditioning, dizziness, nausea and much more that I won't go into which just fade into the daily grind. All parts of what makes up 'Erika' and all hard work. Many of these issues can be hidden or disguised from the general public and fit under the category of an invisible illness, but unfortunately many of them I cannot hide making my disability quite obvious.  

                                                 

POTS

In my case, POTS is a symptom of my AAG, but brings its own significant challenges to the table. Researchers say that a person with POTS experiences a similar feeling to that of someone suffering COPD and congestive heart failure. For me, it feels like my body never rests. I can feel my heart beating in my chest 90% of the time, night or day and my heart rate rests tachycardic, at over 100bpm permanently despite medication, where a normal person rests between 60-80bpm. Upon sitting up, putting my arms above my head or rolling over my heart rate can jump to around 150- 200bpm on any given day.

While the diagnostic criteria focus on the abnormal heart rate increase upon standing (or even sitting in my case aswell), POTS usually presents with symptoms much more complex than a simple increase in heart rate. POTS patients often have hypovolemia (low blood volume) and high levels of plasma norepinephrine while standing, reflecting increased sympathetic nervous system activation. Approxiamtely 50% of POTS patients have a small fiber neuropathy that impacts their sudomotor nerves. Many POTS patients also experience fatigue, headaches, lightheadedness, heart palpitations, exercise intolerance, nausea, diminished concentration, tremulousness (shaking), syncope (fainting), coldness or pain in the extremeties, chest pain and shortness of breath. Patients can develop a reddish purple color in the legs upon standing, believed to be caused by blood pooling or poor circulation. The color change subsides upon returning to a reclined position. Everyday and even sometimes within hours my situation and POTS symptoms can change. I can go from my usual level of function to nauseated and dizzy in minutes and this fluctuation is not uncommon in POTS. It is an uncomfortable and highly debilitating illness.

                               

Whilst there is NO cure for AAG or POTS, for me there is hope for better management and better quality of life. It's all about finding a personal balance, and for me, keeping my frame of mind in the right zone to stay hopeful but realistic. As my neurologist says, we like to remain "positively optimistic". 

I will live with Dysautonomia for the rest of my life. It may progress, stabilise or somewhat improve - there is no set pathway and not enough evidence to truly know. I just thankful I am on the improvement pathway, rather than progressive for now. 

The reality is though, until more research, funding and interest is taken into Dysautonomia the struggle will continue for all of us affected. In Australia there are very few doctors aware of this condition which makes diagnosis and treatment extremely difficult and frustrating, often resulting in mis-diagnosis and lack of understanding. 

So spread the word people, it all starts with awareness!!! 

The more people who know about these horrid conditions, the closer we might get to a cure someday. 

xoxo


**Info taken from Dysautonomia International

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. 💪

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