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

Chronically Fabulous

Life with a chronic illness is tough. There is stigma associated with anything chronic; people are forever questioning why  doesn't someone just get better with 1 treatment, a misunderstanding of the trials and tribulations and the notion of chronic illness has a tendency to gain an overall sense of being 'old news' amongst people indirectly impacted or sideline viewing. This journey has certainly opened my eyes to the many aspects of living with a chronic illness including the good, the bad and the ugly. I knew it would be tough having conditions that are not cureable and don't have a quick fix treatment but I didn't realise the holistic impact it would have on my entire life as I had known it. I didn't realise how it would affect people around me. I didn't realise it would affect me emotionally. I didn't realise how it would affect me psychologically. I didn't realise how much it would affect me physiologically. I didn't realise it would change my views & my ideas on life.
I just didn't realise.

If someone told me what would happen over these next few years in my world I would never have believed it, yet now I am living this reality and it is a constant battle. People I considered good friends and lifelong friends have deserted me, I have a very limited social life and overall it has been & still is, really hard for people to understand what I'm going through. I guess in some way this illness has highlighted some key aspects of my life in which I had misjudged. Only after going through this have I learnt the truth behind so many of my assumptions which has been both revealing and shocking. There have been some really good things come from having this illness but I can assure you there has been double the negatives. But live and let learn right?!

Chronic means that something is persisting or long- lasting. It doesn't go away with simple intervention. It's long, it's gruelling, it's harsh, it's mean and it's isolating. My illnesses are chronic, although along my journey I have also many, many times been acutely unwell. I like to think of the differences between acute and chronic illness as different sporting events.
Appendicitis is a sprint, whilst my situation is a triathlon. If you present to an emergency department with appendicitis it's a pretty well-planned machine that kicks into gear. The start gun sounds at the positive abdo exam & positive bloods. After that it's just the matter of how fast everything happens. As appendicitis can get bad really quickly the sprint is on to surgery then recovery then the final sprint out the front door. The sprint is over before it's started & boom, acute problem handled. Finito!

Having my chronic conditions equates to a really long triathlon! Like 5years long so far. When I wake up and attempt to get ready for the day, it's the bicycle leg - it rolls on, it's a similar routine each day yet there are windy paths depending on which nurses I get & whether my medications control my heart & blood pressure enough to not pass out too much & function. As the day goes on it merges into the swimming leg - it's all about moving. Nothing but moving. Not stopping and just getting on with the days tasks, be it hospital visits, specialist appointments, rehab, or resting and relaxing, just like swimming if you stop you sink...or in my case you loose motivation and become engulfed in the
difficulty & sadness of the situation.The running leg of my triathlon doesn't stop. Ever. Because that's the way life is with chronic illness. It's not something that disappears; rather it has bumps and hills, downward slides, sharp points, curves and flat straights. It is never ending and each time you think you're getting closer to the finish line you remember that you must pace yourself to get there safely. As I said, it's tough.

When you have a flu or common cold or even a nasty infection it is easy to be consumed by your health status. But then those issues pass & focus is placed back onto the daily grind. It's here that I believe the real challenge lies for people living with chronic illness, in that we must try not to let  health encapsulate our whole being. Ofcourse I'm aware of how I feel, what's going on with my body & my everyday struggles but I also try to remove myself psychologically from my pyshiological state and just be me. The same old Erika that used to dance all night, drink cocktails, laugh, run & study. Again, it's not easy to remove myself from the features that define me most and have essentially been my entire focus the last few years, but I try to do it because I want to be more then just my illness. I want to be me & I want to feel like I fit into life and I want to choose what defines me as a person.

One of the biggest things I've come to learn over the last few years is that despite a diagnosis or lack of, absolutely everyone has a choice about how they live their lives. Be it choosing to accept or decline cancer treatment, choosing to take/refuse medication or go to work/school or anything trivial like what to wear, what/when to eat, how and every other decision. It took me a while initially to wrap my head around the idea of choice, given my situation. How could I choose anything!? I was the victim in this and was the unfair hand I've been given. Yes that is true. But it's all about how you decide to deal with your cards. On most days I chose to fight and put in the hard yards for any chance at recovery, whilst on few other days I chose to do nothing and are consumed by my emotions. I had a choice over how I handle myself given the crappy predicament. This was empowering and enlightening but also scary. I think that the common denominator between all illnesses is that you can't really choose your health or which illness would be your preference, but you can choose how you want to let it impact on your life & perceptions of the world.

It sucks to be sick. And it sucks that Chronic illnesses do not disspear overnight or by taking a magic nutritional supplement or the newest miracle diet. Truthfully, i believe that only people living with chronic illness or their close family/carers really understand the full impact of poor health. I choose to put make up on my face and smile when I'm out. I choose to paint my nails 24/7 with bright colours to remind me that it's normal. I choose not to cry infront of people. I choose not to speak of the multiple number of pass outs every day. I choose to answer 'I'm fine' even when I'm not. I choose to enjoy fashion. I choose exercise within my constraints. And I choose to not let my chronic illnesses define me. I sometimes loose this battle and my world focuses on my sickness and it's a struggle to think beyond the current situation, but this is no way to live. Life is so much more than our health & worries. It should be a balance of all entities.

In my ideal world no one would be sick or struggling in any way. But the fact stands that people are going to be sick. Most people will be acutely unwell or sick for short periods and recover without a hitch. That is life. At the end of the day though I try to remind myself that I am Me.
Yes I have chronic illness but it does NOT have me!

Undecided. Am I? Maybe? No? Yes? Argh!! what?

Picture undecided.

                   OR






Forget the above, just look at me.

So today I finished my application for a Masters Degree. It was a pretty intense application with a lot of information required and proof of previous marks etc so it was a little drawn out getting it all together.

Today I also logged onto my current university to which I am enrolled to check semester dates for next year. I also replied to a scholarship email about choosing my professional mentor for next year.

So yes, I'm a little undecided.

So much of my life has been up in the air the last few years professionally, personally and health-wise. I've never really thought much about whether I had a life plan prior to illness.
I wasn't someone who knew at age 4 what I was going to be. I did know from since I can remember that I wanted to work in health and I always tossed around the idea of studying medicine to become a doctor. Then in year 7 legally blonde was all the rage so I thought that I might be a lawyer. Pink outfits, nice laptops, pretty hair and nails, cute dog and nice boy to top it off. Makes sense right?!? Ok so the lawyer thing didn't last long at all. I went back to my passion of healthcare.

I am now in limbo. I'm in limbo in so many areas of my life and I hate it. But today - especially in relation to my future career & study options, I'm stuck in abeyance.

I know my first preference would be to continue to study medicine and become a doctor but I do not know if I am physically capable of the coursework. Mentally my capacity to think & study is fine most of the time (I think?!). If I were to finish the degree I know there are many areas in which you don't need to stand countless hours of the day or do physical tasks. I believe I could work in a specialty, even with having some degree of disability, without too many hassles but I also understand the need for the coursework to be completed to prove competence & understanding of practises within many areas. Obviously the only way to become a doctor is through hard work, persistence and medical school. There is good reason for completing the degree as it's designed, as not only does it provide a wide base of knowledge but it also allows for the opportunity to see if you are up to scratch and ready to work in the field. It was so competitive to get in and it is something I don't want to give up until I am forced to make that decision by my health. Right now I'm clutching to straws as I'm on my last lifeline in attempt to save my position in the course.
In the meantime as I am covering all basis. I have applied for a masters in which I could complete via distance education for a start. Thankfully because I have already completed my degree in OT the option to do a masters or graduate diploma is viable to me. The one I've applied for is still within the healthcare scope, just a different aspect of it. It could be really interesting and I am intrigued as to the opportunities it possesses upon completion. I am hoping I get accepted. Not because I am certain I want it but I could see myself happy in this field and above all, I need to do something.

I need to do something 'normal'. I am enjoying being home and out of hospital. This is a wonderful feeling of freedom and unknown. I like that I can choose what I want to wear each day instead of a nurse grabbing whatever's in my draw, I like having options for breakfast, I like my own room, I like my own timetable. Upon realising I was still in hospital at the start of Semester 2, I have had no intentions of studying as I would be far to behind and I am not physically up to it. This time has been used to make the most of getting better with lots of rehabilitation and getting my feet back on the ground, both literally and figuratively. I am glad I have had this time to rest, recover & reboot from the first 9months of this year as I was so seriously ill at times, but I think am ready to get back into life and continue on my journey to better health.

As much as I'd like to flush my health issues down the toilet the fact is I am still really unwell and extremely debilitated. I cannot sit up for longer than a few minutes unsupported or move in certain directions and postures without going unconscious. Sickness has become such a huge consuming part of my life and I have not been able to control it. Now that I'm home and no longer in hospital I have more control over my days. This illness will not go away or magically disappear but I will keep getting stronger and keep fighting for the full life that I want. I am going to have the normal life I desire, there might just be some added elements to make my normal work for me. My life will involve a career. My life will involve a social life. My life will involve meaning. My life will involve a relationship. My life will involve ambition. My life will involve my friends & family. My life will involve everything and anything I want.

If I don't fight for what I want and bow down to accept my current situation as permanent then I am the loser in this story. By starting to do something normal and continue from there I hope that I'll have as good of a life as I would've if this didn't happen to me. I may not get as far as I would've in some aspects but in others I have already soared beyond my furtherst imagination. This journey is a bitch. It's cruel and nasty and plain out unfair but instead of letting this illness consume my whole being, it will be  just a part of me not all of me.

So even though I have NO idea what I'm doing I know that I'm doing something. If the something is another year of recovery or restarting my Uni studies than so it will be.
What are you doing?
What is your 'something'?