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'?

Pondering Pain

 "I can't change the direction of the wind, but I can adjust my sails to always reach my          destination."

(Jimmy Dean)

OUCH!!

That word pretty much sums up my week thus far.

This week has been pretty painful. I had an operation on Monday which will hopefully allow my future admissions and treatments to go smoothly and more easily. I am really hopeful this will be worthwhile and helpful, whilst keeping in mind it does have it risks.

As most of you know I will push myself 110% to regain my life so I'm a bit bummed that I didn't go to my scheduled specialist appointment or 2 other appointments this week but I plan on being back & ready to face the world by Monday. 

In my head I thought this surgery would be more of a hiccup and bump than this speed bump it has perpetuated into. People told me it would hurt a lot and the articles I read about the procedure indicated it would be sore post-op yet I chose to block this knowledge out and plan for little discomfort and pain. Why did I do that?

I don't know. I'm doing quite fine now pain wise & I think I'm on the sliding scale downwards to my normal self. The pain I have experienced this week has been completely different to my normal pain experiences. I've always known there are different types of pain and this week has most definitely reminded me of that!

Pain is all relative. 

Some people sitting upright happily drinking their cup of tea rate their pain as 10/10

Some people lying in bed resting in a relaxed position claim their pain to be an 8/10

Someone doubled over screaming claims their pain is 3/10

Another person doubled over in pain screaming claims their pain is 12/10

Someone with their arm twisted and broken claims their pain as a 4/10.

I have experienced a lot of pain since becoming unwell and developing quite severe neuropathic pain & other conditions (thanks to my dodgy ANS) which have changed my understanding of a pain experience. Before getting sick I don't recall having much pain in my life. I had the odd operation and falls on the netball courts & exercise activities etc but nothing too memorable. Nowadays pain is an everyday experience for me that ranges from discomfort to excruciating sensations. 

Pain is horrible. I feel for any human or creature in pain and wish it could be alleviated. I wish that we were a pain free society and no one had to experience it to any degree. Not only is pain itself difficult, but there are other contributing factors like peoples perceptions of their own pain and of
others pain experiences, how we deal with pain and comparison of pain levels can all be challenging. 

We can never know the "worst" pain in the world. All we can know is how our worst pain experience feels and we can aim to fix or ease that. In hospital over the years I have seen a variety of people experience pain for many different reasons. Through my observations I feel that the job of medical professionals to decipher what each pain means or what is happening within the body is tough. So how and who decides what is the right or most correct pain response to the situation? 

I believe it is impossible. 

We can know what a typical pain response reaction might be for a certain injury or illness and use that as a baseline but the rest is once again, all relative. It is assumed that all reports of peoples pain are accurate in comparison to their previous pain experiences. After all, that's all we have to compare it too.  People who try to compare their pain  experiences with others will never be satisfied as their pain of 10/10 may be another's pain at 3/10. This is why I think it would be really hard as a professional to make a judgement call on whether to give the person a potent medication to combat the pain or whether a smaller dose of a lighter pain medication would do the trick. We are all only human, including healthcare workers.

I am lucky and grateful that my pain experiences have never been questioned or dismissed by a medical professional, rather I have been able to find adequate relief via both pharmacological and non-pharmacological approaches. It saddens me though that I have had a negative experience when dealing with one specific nurses' approach to addressing my pain over the years. Her approach being that of ignorance and actively choosing to do nothing. I believe her choice to treat me poorly is because she does not like me personally (which is fine). This however should never be a reason to treat someone poorly or negatively, especially in a professional situation. I appreciate that all professionals need to have an understanding of the type, location and length of pain alongside the rating on the scale of 1-10 but I do not appreciate an individual's choice and opinion affecting the way pain is handled when a clear protocol is present and a professional has elected to ignore this.

There is always a flip side to every coin though. I don't know if I was just naive or stupid but prior to living in the hospital I did not know how much some people abuse the system. It was a completely foreign thing to me to witness a drug seeker doing anything to get some harder pain medications. I knew people addicted to drugs would do anything to gain some but I didn't realise how often it happened in a hospital/healthcare setting. It is so unfortunate that in today's world people are not always genuine so professional judgment is pivotal to ensuring safe use and administration of legal medications under their control. Everyday there are a number of people in the community who have drug seeking behaviours and addictive natures who will stop at nothing to gain high-level pain medications which makes everything harder for everyone.

After my surgery I was not in too much discomfort, infact I was sore but not pained. That night and the next day or so have been really bad hence this crappy attempt at writing so etching this week. All of this did get me thinking about a few things.

How bad is bad? 

What does this pain feel like?

How can I relieve this even a little?

What is the purpose of pain?

Is there any purpose to pain?

I don't know the right answers but I think these are good questions I try to ask myself when I am struggling to better understand my body and deal with the situation. This week I have a HUGE appreciation for my neck collar,ccomfy neck rest, dodgy blue pillow and also the multiple ice packs and nausea medications used as part of my survival kit.

Pain does not discriminate & people live with pain their whole lives. I don't know much about pain, I just know it hurts and everything would be better without it!! 

 "Problems are not stop signs, they are guidelines."

                                                      (Robert Schuller)

xoxoxo

My very own Vampire Diaries

OMG you guys!!! My very own Vampire Diaries

Unfortunately in my diaries there are no sexy men who sparkle with beautiful blue eyes or other supernatural beings, what a let down! Honestly- no fair! I feel pretty ripped off that my version of vampire diaries are not as exciting or tantalising, rather they are just everyday vampire diaries.
What a shame, look at him!!

My name is prickle me Erika? (lame). Actually no, its Stick it. Wait - maybe its pin cushion. Nope.
Its called being Chronically Ill.

I'm extremely lucky that I do not have a fear of needles or injections or foreign bodies inside my body. Bodies being health related stuff (get your brains out of the gutter people!). So many people have huge fears about these things and if I did I would find myself in a very unfortunate place as for me its a regular thing.
 

The thing about needles, cannulas,  PICC lines, blood draws and injections is that they are a very necessary aspect of my life and an all too regular occurrence. Before I got really sick in 2010 I had undergone a few blood tests and vaccines, an IV etc for surgery but definitely not on a regular basis. I was reasonably healthy. I don't have a phobia but I used to get a little nervous each time that it would hurt really badly or my vein would roll or something would go unplanned but it never did thankfully. It did hurt a few of the times but I wouldn't say I ever had a particularly painful experience or a scarring moment.
 

When I was admitted back in 2010 I was having extremely regular blood draws and tests and daily injections for blood thinning for my immobility and nausea meds. At first it was a bit scary and I was really concerned about both the stinging pain of it and the results that were to come for whatever scary test was being run. After a week or two I adapted. It became less of a concern for me and the blood collectors no longer phased me. I guess like all things that you repeat on a regular basis, it became second nature. 

Fast track forward nearly 5years and I now know most of the 'vampires' by name or at least faces. Sadly these vampires don't come ridiculously good looking, sparkling and mysteriously unable to see the light, instead the ladies that come to collect blood everyday are known in the hospital as vampires. Exciting name and a little obvious right?! luckily they mostly don't mind being called that. It amazes me how easily they can palpate a vein. And I mean the tiniest smallest little buggers that exist in our bodies. It's very impressive. Unfortunately for me we have come to a point where they are struggling to find even a small vein for blood tests. This week we have resulted to using my foot. My foot!!! It surprisingly really hurts and the ankle region is pretty tender. I've had cannulas in my feet in the past during hard times or when I've been super dehydrated but it is not a common occurrence and of course not something I like. Recently we have been using my index finger as the 'go to' place and it has held up ok considering it's such a delicate little area but this week it wouldn't cooperate. 

Something a little different has happened this week which I'm amused by. I have had a number of blood tests this week because I have somehow got my electrolytes out of whack and also because I've been on high volume IV Fluids & Hartmans, gosh I'm clever right?! :-/  I've also had another round of IVIG amongst that which requires IV access. Anyway, the vamps usually come on their reaping around 7-7.30am which is far too early if you ask me. Surprisingly, the hospital doesn't run on my time preferences so it is what it is. They walk into my room, flick on my bright overhead light and come up to my ear and say something along the lines of 'darling wake up, time for blood test'. Normally I wake up and try to be semi-conscious and polite to the lady who is waking me up long before I am ready. I pretend like my eyes have vision and they aren't crying and sore, I pretend like I am enjoying to chat about whatever despite not being able to comprehend with my mind in sleep mode, I pretend I'm not dizzy and exhausted. I pretend to be normal and  not phased. 

I feel that these people are awake and technically helping me by taking my blood that I owe it to them to be a decent human, regardless of my distain for mornings. Well this week I have successfully broken my code of conduct towards the vampires. This week I literally slept through them taking my blood. I woke up, said hi and then..blank. I actually fell asleep. I don't know whether to be proud of this little achievement or sad or even scared. I guess it's great that I didn't feel it but disappointing that I've gotten so used to the procedure and sensation I've essentially blocked it out or become desensitized to it or something. It was somewhat surprising when I woke around 8.30 to find my arm taped up with a cotton swab under it, the way they put one on after any blood draw. This happened twice this week which means I'm either really tired or the ladies who stuck me this time were so good I didn't feel their technique. I think I'm just tired. Bugger.

The only other times I have not felt a needle or anything else is when I've been unconscious. That is a huge advantage to this nasty illness. When I'm out and unconscious I cannot think, feel, hear or see anything. It's like a black...nothing. I have had two events over the last few years that have made me very uneasy and worried in relation to the vamps. Both times I was in bed (like always) and I must've had my hands up or something and was passed out. The blood collector of the day took my blood without my consent or anyone else's knowledge. When the nurse found me and corrected my position and waited for me to regain consciousness I had a cotton swab taped to me where my blood must have been drawn. I immediately asked the nurse when did they do the bloods and they had no idea. This made me upset and angry as these people know I go unconscious and there is a sign above my bed at all times if they cannot rouse me (aka I'm unconscious) to please go and find a nurse. I felt a little violated. I put my trust and faith in the medical/health professionals every time I pass out. when I'm out they could do almost anything to me without consent so it is something that I respect the staff for respecting me. Having a member make the same mistake twice was not acceptable and henceforth this was followed up with senior management and hasn't happened again thankfully.

This week has got the wheels in motion, full motion actually as we have arrived at the end point for these little and big veins. The vampires are really struggling to take blood because its difficult and more importantly the IV cannula and Picc team whom their job is to place accesses all day, are at their wits end. I've also had more than enough of being poked with no success. So it has come the time to get a more permanent access. Last time I had a picc line placed it worked amazingly but I got sepsis (from a stupid nurse who I strongly dislike) when she refused my request for her to put gloves on  and she used poor hygiene and demonstrated a clear lack incompetence. This led to me becoming extremely and seriously unwell and the removal of my line. My doctors have been hesitant to place another central line but we don't have much choice now. This time will be a different form of central access and I am going to be beyond protective of who touches it and how aseptic their technique is. I cannot afford another infection, especially a sepsis one!!

It seems weird to say but I think I am actually looking forward to this next chapter. The less poking, prodding and tissued cannulas all the better I say. Bring on this next chapter because after all, I can't really change it.
And now we do what everyone part of any health system does...wait. wait, wait, annnnnddd wait.
I'm inspired & it seems only fitting that while I wait I might as well go and watch Twilight or True Blood??

 

 

Are you depressed?

         
 ARE YOU DEPRESSED?

Well...are you?
Should you be?
Would you be?

This is the ONLY question my GP ever asks me in an appointment and it's got me in reflection mode.

Over the last few years I have most definitely been challenged more than ever more both emotionally, physiologically and physically. Having a seemingly normal life and then having this horrid illness affect me and hit me severely has definitely changed parts of me. This change has been both negative and positive at times.

I would think most people given my situation would have a similar reaction to me but really, who knows?!?! We are all uniquely wired and our coping mechanisms vary greatly across similar situations. Honestly given my situation I feel I've done OK. Sure at times I've felt broken and defeated and other times I've felt inspired and determined, it's all relative to what's going on and my perceptions of events.

When I got diagnosed I had been in hospital for at least a few weeks/months and been through SO many gruelling tests and scary differential diagnosis. I was told I may have terrible life threatening conditions and to be prepared for bad news while other times the answer was that they didn't have a clue, so when I got my diagnosis I was happy. I was not happy that I had dysautonomia I was happy to put a name to this hell I was experiencing. I needed something to affirm what I was feeling and why I was feeling it. I was happy to have an answer, regardless of what it was as it was more than those horrid words of 'We don't know yet, it's very complex and we have never seen this before'. It was validating my experiences to some degree.

Then came the realisation that I was not a typical case and that I was infact severely disabled and totally reliant on others for every aspect of my life. For any independent young person or older person or anyone, being stripped of your independence and dignity would be challenging. I was no exception. I was sad and upset, I cried, I screamed and I fell asleep with tears rolling down my face. I was angry, I was jealous and I felt I was dealt and unfair hand at life. Things were going well and life was good before this happened so it was so far from my previous reality.

Was I depressed then??

I wondered this from my first day of realisation and I still wonder this at times. Initially, like the very early days, in my head this was all nothing major and that this whole health drama would blow over and I'd be back to normal in no time. I even convinced my friends and family of this because I actually whole-heartedly believed it. Upon realising my severely declined health status I started to question myself, my family and the health professionals involved on my team as to whether they thought I was depressed. Was I coping and dealing with everything or was I in total denial? I did a lot of thinking and a lot of mourning my 'old life'.

This whole journey and experience was always bound to involve interesting thought processes, internal journey and many interesting discussions. My feelings and emotions changed my outlook of each day but the whole time I have done my best to stay positive. In the first few months in hospital I wondered about depression. I wondered about how to overcome this situation and continue to look forwards. Once diagnosed with dysautonomia and other comorbidities I was placed on an antidepressant type of medication for an interrelated pain issue and also as a form of treatment in stabilising the autonomic nervous system which has been used in many literature for co-managing POTS with success. I hated the drug as it did nothing for my unconsciousness and so I was switched to a different one with a more pain controlled focus which worked well. I was not placed on one for depression which I found strange. There were many days I wondered if the medication was masking the depression or helping me, but I came off the medication with no problems so I don't believe it was sustaining my mental health. Did the medication have any significance given that my dosage was below the therapeutic dose for depression?
Did that mean I was not depressed? Or that I was coping ok if I was suffering?
I don't know. Maybe. Maybe not.

My life is no where near adequate or great as before illness but it's the life I've got right now. I have sad and happy days I have deep and dark times and there are moments which I can almost forget about my current state. For me, this changes on an hourly basis, just like the tides in a sea.
So do these emotional changes make me depressed?
This is something I have asked my team continuously over the years.

I have continually been told along my journey that I am having a perfectly normal response for someone who has experienced a traumatic and drastic change to their life - such as this illness. I have constantly been told by professionals that know me extremely well that I am not clinically depressed. So I read up on the true definition of clinically depressed and I agree, I am not clinically depressed. I am devastated and I have downs & ups and high & low times but these are all typical responses to my situation. I sometimes feel depressed or at least what I think it is to feel depressed but this does not mean I am clinically depressed.

I have been honest with myself and my team and family along this ride and I feel confident in their ability to speak with me if they feel something is wrong. Since coming home though, I have a few added members to my team who don't know me so well just yet. One of whom is my current GP.
My GP doctor is kind and lovely. She's not as gorgeous and on top of things as my previous Dr (mr hottie) as he was really good but she does the job. I mostly go and tell her what I need and why, and update her on all of my specialists, but there is always one thing she asks. It's not my blood pressure readings or my heart rates or which antibiotics I'm on, it is always the exact same question...

"Are you depressed?"

I have now seen this doctor for a few months regularly and I saw her again this week where she asked her question and I left thinking to myself is that her management? Is that an appropriate approach to my situation? Is this what she thinks I should be?

I've thought about it and I have become a little irritated. I do not believe she asks every patient who comes to her office if they are depressed, yet because I have chronic illnesses I am automatically assumed to be depressed. If it was only every so often then this would not be a point of consideration, I do not think it is fair and I also think it is quite naive.
It appears to me that her assumption is because I am very disabled and have little function and live my life with a chronic illness, that I must be depressed. I understand and appreciate the subject being touched upon at times but I do not agree that it should be assumed I would or should be a certain way because of what her perceptions are of my life.
I think this professional has a very unprofessional an unempathetic way of asking a potentially serious and meaningful question. If it was incorporated in her conversation or amongst other medical dialogue then it wouldn't seem so brash. I am lucky I have a great medical team and family and support network in my life to speak with and discuss my thoughts and issues with but I don't know if I would find the bluntness and directiveness of her repetitive single question during an appointment helpful or inviting. If I wasn't dealing with my feelings and emotions I do not believe I would feel comfortable and happy to discuss such things, given my feelings that the assumptions she makes are consistently inherited in the question and the tone of voice in which it is delivered.

So this week at my GP appointment I was asked once again "are you depressed?". My answer was that I don't think so. And suprisingly that was sufficient for her. I wonder what she would do if one day I say "Yes". Would she know how to cope? Would she put me on a medication? Would she ignore my admission? Until or if this ever happens what she takes from the answer is unknown to me and what I think about this continual and singular focus is unknown to her. Don't you love human nature and it's mysteries.

After this experience all I know is right now in this minute I am a number of things. I am determined. I am sad. I am happy. I am nervous. And I am hopeful for the future. Right now I am focusing on being the best I can in every aspect of my life. I have good days & terrible days. I am only human. I commit myself to act if I find my mind slipping into a negative or depressed place. Hiding something as deep as depression would be awful and I hope that anyone who needs help can find it.

Although I do not agree with the way the GP asks her infamous only question, it has reminded me to continue to keep my mind in check and ask myself 'are you depressed?' because at the end of the day, I am the one that knows my mind and my body, not anyone else.