Do you ever feel stuck or in a rut??
The word stuck has completely defined my last week.
I am stuck in hospital.
I am stuck in bed.
I am stuck in my pyjamas.
I am stuck in my social life.
I am stuck in my education.
Ahh hell of it, I'm stuck in my wheelchair too!!
I don't want to be stuck and I try so hard not to be but I am.
Over the weekend I had 4 of my bestest friends drive for over 2hrs each way to see me in hospital. It was pure bliss as always. It was Christmas in July this occasion so they all arrived in red & green offering Xmas cheer in the form of food and fun. I always secretly hope for them to sneak some contraband in like a nice white or bubbly but they know I shouldn't and so they resist. My IV pole was immediately decorated upon their arrival with tinsel brought to add to the fun. It was SO much fun!
At the end of a couple of hours I was totally wrecked and they noticed this so went on their travels back to their homes. As I lay in bed all alone again with the sound of the air conditioner humming away I think about the fun had & our chats & I feel...stuck.
I keep thinking of my beautiful friends A, E, K & T and how well they are doing in life. Two of them have recently become beautiful blushing brides and the other 2 are engaged. A is doing her PhD whilst working simultaneously & planning an overseas trip, E has just built an amazing first home whilst climbing high in her successful career, K is working hard helping people whilst planning her wedding too and T is starting out at a new job of opportunities whilst finishing up her newly established home with her loving husband. They are all doing something and they are all going somewhere.
I love hearing their stories sharing laughs and gossiping happily and I wouldn't have it any other way. Afterwards though, it's all got me thinking - where am I going? - what am I doing?
The answer to both eludes the fact that I am stuck.
I am stuck in the hospital system again because my body has decided to misbehave. The biggest elements of my days here include whether my alternating shower day is today or tomorrow, what pajamas are the best temperature for today, I wonder what test is in store for today, will the physio and OT turn up today & the never ending question of when can I get out of here!?
When I consider that this is my typical day and these are my biggest daily grind I am not only sad but I feel deflated. I feel ripped off and cheated by my physical limitations and this leads to more thoughts about what I should be doing right now.
Uni. I should be at university and I should be finishing my degree in medicine this year. Instead I am stuck again. I am at the point (again) the university has to decide whether they will keep me in the course as I have failed to beat the deadline to commence and get home. It is getting monotones. Each year and each semester it comes like clockwork - me writing another letter to the Dean of Medicine requesting special leaves, deferments, absences as I am still to unwell or in hospital so cannot attend. I've tried so hard to stay in the course, hell, I've completed every online and minimal attendance subjects of the entire degree whilst an inpatient in hospital & lying in my hospital bed. I know I've tried my darnedest to show my commitment but I do not know if I've reached my last lifeline. I promised myself & indirectly the university that I would be fit for study this July for the start of semester 2, but I am nowhere near ready. In theory, I had to start this semester or else I would not fit in the typical timeframe of completing the course. So here I am again asking for a chance but knowing it's most likely not possible. I am left waiting on an email to decide my educational destiny. I'm stuck by my iPad waiting and wondering so many things. I wonder if I will be well enough to ever complete this?? Am I kidding myself?
I think living with a chronic illness has put me more in the stuck lane than ever before. Before illness my worries surrounding me were more choices and opportunities. I never felt like I do now, which is waiting with limited other options and no real choice. Before Illness it was a different kind of stuck, like when you don't know if you want pink or blue...there are options and you can get unstuck by simply making a choice. Those choices all seem so easy in retrospect as I look on waiting for answers to things without any choice, rather things that leave me stuck.
I guess here's to another restless night of the unknown that is 'stuck'...
Tuesday 29 July 2014
Sunday 13 July 2014
Hello Blogosphere!!
So this is my FIRST ever attempt at writing a blog & I'm both excited and apprehensive.
I wanted to start this blog to raise awareness and tell my story of my battles with severe Dysautonomia, in the form of POTS & AAG and my life with Chronic Illness.
Little bit about my history?
I first became acutely unwell in early 2010 following a snowboarding holiday overseas for 3months. I was a perfectly healthy young twenty-something yr old girl who had finished a degree in Occupational Therapy and had just started my second degree of Medicine which I was super excited about. Life was seemingly perfect; I ran often, played netball, partied, socialised and lived a very active 'normal' life. I loved life and my little bubble world - it was Bliss!
Where am I now?
Now 4 years along and I am still very unwell. I've had almost every aspect of my autonomic nervous system affected by Dysautonomia and as a result have spent the last 3.6 years as an inpatient in hospital. Yes, that's right...6 months at home since 2010!
Sadly, my Dysautonomia is not a resolving one as we initially had hoped for. Instead there is no cure but a good possibility of better management. And so this is my life now living with an incurable sometimes invisible Chronic Illness.
What are my interests & why blog now?
I don't know what has prompted me to finally pick up my computer but I'm here now & looking forward to see what comes of it. Despite how I sometimes feel, Dysautonomia is not the only aspect of my life. I have an Amazing family, support network and some true friends to top it off. I have a few strong interests I try to distract myself with when times are tough, like:
- candle making
- music of any sort
- TV series and movies
- reading Jodi Picoult and alike
- studying
- social media
Anyone else have similar interests??
This first entry is coming to you from my hospital bed at 9.30pm whilst 1 89yr old patient screams out "help!" countless times per hour at the highest decibel she can manage and another chants endless prayers in competition. Joy oh Joy I'm just so happy to be here 😉
For some crazy reason, which I'll most certainly regret, this is a "before illness/me today" image. I've put this picture up as part of demonstrating my story. I started this blog to tell my story & so if appropriate I will use pictures to supplement that. I want people to understand a bit about my life and I also want this blog to me a bit of a memory catcher for now. If you need to shut your eyes to get away from my photos please feel free!!
If you're interested in my Story or have similar experiences or interests please stick around and have a read.
xoxoxo
I wanted to start this blog to raise awareness and tell my story of my battles with severe Dysautonomia, in the form of POTS & AAG and my life with Chronic Illness.
Little bit about my history?
I first became acutely unwell in early 2010 following a snowboarding holiday overseas for 3months. I was a perfectly healthy young twenty-something yr old girl who had finished a degree in Occupational Therapy and had just started my second degree of Medicine which I was super excited about. Life was seemingly perfect; I ran often, played netball, partied, socialised and lived a very active 'normal' life. I loved life and my little bubble world - it was Bliss!
Where am I now?
Now 4 years along and I am still very unwell. I've had almost every aspect of my autonomic nervous system affected by Dysautonomia and as a result have spent the last 3.6 years as an inpatient in hospital. Yes, that's right...6 months at home since 2010!
Sadly, my Dysautonomia is not a resolving one as we initially had hoped for. Instead there is no cure but a good possibility of better management. And so this is my life now living with an incurable sometimes invisible Chronic Illness.
What are my interests & why blog now?
I don't know what has prompted me to finally pick up my computer but I'm here now & looking forward to see what comes of it. Despite how I sometimes feel, Dysautonomia is not the only aspect of my life. I have an Amazing family, support network and some true friends to top it off. I have a few strong interests I try to distract myself with when times are tough, like:
- candle making
- music of any sort
- TV series and movies
- reading Jodi Picoult and alike
- studying
- social media
Anyone else have similar interests??
This first entry is coming to you from my hospital bed at 9.30pm whilst 1 89yr old patient screams out "help!" countless times per hour at the highest decibel she can manage and another chants endless prayers in competition. Joy oh Joy I'm just so happy to be here 😉
For some crazy reason, which I'll most certainly regret, this is a "before illness/me today" image. I've put this picture up as part of demonstrating my story. I started this blog to tell my story & so if appropriate I will use pictures to supplement that. I want people to understand a bit about my life and I also want this blog to me a bit of a memory catcher for now. If you need to shut your eyes to get away from my photos please feel free!!
If you're interested in my Story or have similar experiences or interests please stick around and have a read.
xoxoxo
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