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.

Wait...so why all the weight??

So I came across this little funny picture quote and thought Oh My God this is too relevant.
This experience of having chronic illnesses has changed many aspects of my life from super simple things that are barely worth a mention to things that have effected me greatly.

The thing about chronic illness is that each person finds particular elements more challenging and difficult to deal with than others on any given day. For some people it's taking multiple medications, for some people it's the loss of friendship, for some people it's the immobility, for some people it's the labelling that comes with it, for some people it's the lack of understanding from loved ones and some it's the loss of independence. Whatever it is, there are many things that are challenging in the day to to day grind of living with chronic illness.

For me all of the things above impact me in one way or another and depending on the day and the events of each day these things shift in priority. However, one thing that remains a constant struggle for me has been dealing with a major side effect from many of my medications & immobility, which is weight gain.
I HATE weight gain and I HATE the scales!!!

In the grande scheme of my life and level of disability this probably seems silly and ridiculous to be concerned but on some days it bothers me more than anything. There are so many things that have been given up by default because of my illness and each day I focus on a different thing. I could write an essay or thesis on the different challenges that arise for me on daily basis, but instead here's a quick glimpse.

Some days in hospital when there's been a new nurse giving out medications I've had comments made to me like "oh wow you're on more medications than my grandma" or other comments stating how many tablets I take and whether they work. At times this gets me quite upset because I start to question what people think. I feel embarrassed that people like these nurses look at me and judge me based only on what medications they hand out to me, despite actually asking me to find out whether I'm taking that medication for it's typical use or an off label indication. A number of my drugs are being used off label and so unless somebody takes the time to ask me why I'm on them or gives me a chance to clarify things I am left feeling like a druggy and misunderstood. So a challenge can be people misunderstanding my medications and making me feel like something I'm not. Yes I take a ridiculous amount of medication but without them all I am up sh** creek without a paddle. Proven.

When I first got news that I was going to have an electric wheelchair as my primary way of getting around I was petrified. I knew I couldn't sit in a standard wheelchair as even the most modified and complex manual chair were not supportive enough for me. I knew this was not a death sentence, I'm an OT for goodness sake and in fact it's far more independence than I was having lying still in a hospital bed, but I felt scared. I was nervous of how I would be received by my family and friends and even strangers - I was worried on a generalised basis of what I would think and feel. When I first got into a chair to trial it I was very self conscious. I didn't want all the adjustments I needed or anything that  made me look even more 'special' but after a while I got used to it. I got used to the odd stare out and about and I got used to being semi-comfortable in myself. It's the vast degree of staring that varies greatly and the way people interact with me and cope with me in varying situations is something I'll never get used to. Some days it is at the bottom of my challenge list but other days when people stare at me and continue to turn their heads to follow my movements until the last sight of me or point and give me a pitying look I feel upset. It's a changing challenge, depending on when and where and how the events of the day unfold.

Lack of mobility and need for assistance is another area that is challenged depending on the
circumstances. Some days I don't think twice about how sad it is for me to have lost all of my
independence while other days it sits right upfront in my mind and I cannot shake the frustration and
disappointment that consumes me. I should be proud of where I'm at right now but it just takes one person to say something or one thing to trigger me into this challenging situation. Things as simple as not being able to reach my socks from my drawers or a jumper hanging in the cupboard can turn my
day a little upside down. I know in perspective it's not a big deal but when I can almost reach it by half a finger and know I can't reach forward and risk passing out and falling out of my chair it's like it is laughing in my face and teasing me. Once again my body fails my expectations and I am challenged by that.

There are SO many other examples I could go on with for an eternity but today, this week, right now I am upset and challenged foremost by my weight. I have never been a super tiny skinny person. But for most of my life I've been a petite & healthy weight and I've lived a very active lifestyle. I did have my 2-3years in college where I gained the 'fresher 5' it was called (more like 10) but even then I was not overly unhealthy (aside from the copious amounts of alcohol). In the year leading up to before I got sick I was very healthy and sometimes I think that's why this has hurt even more. I was doing really well and I was very happy. I went to the gym a number of times per week, I loved the treadmill, I went for walks/runs near my family home and I even played netball the week before I went I to hospital. How crazy is that!! I was a typical 22yr old girl with a healthy lifestyle. When I initially got sick I was so nauseated and unwell I barely ate. I was unconscious a lot of my days and too sick to eat so I lost a fair amount of weight quickly but it was the least of my troubles right then and it wasn't a concern at all for me.

Soon after this initial shock and diagnosis though I was started on high dose cortisones & steroid and a number of other drugs of which I was unaware they had huge side effects of weight gain. I got super hungry very fast and I started to gain weight rapidly. At the time I did not know a number of the drugs were massive weight gainers and retention medications and if I had known this I believe I would've asked for a similar medication without this side effect to be used in replacement. Of course
though, some of these medications I am still on today as there are no alternatives and without the medication I am a symptomatic mess with an even more uncontrolled nervous system and vitals that I cannot deal with.  I still remember one of my first appointments with my autonomic specialist saying "you're going to get fat, get over it" after speaking about a medication I had no option but to use. I was a little relieved that at least this time I knew what to expect, but really it didn't make the process any easier.

Since starting on a number of weight gaining medications and then gaining above my healthy weight,  I've dreamt of stopping them, yet this is not possible and I still remain on a number of them. There is no way of coming off them anytime soon so I've had to learn to deal with the added weight but it has not and is still not easy. Since my initial introduction to these medications I have lost a large portion of the weight I had gained rapidly but still have a very long way to get back to what I was originally or even to a weight I feel comfortable in myself at. I have been lucky in that I haven't had to really diet to loose this weight, more just lost it along the journey as I have been able to move more and complete small activities whilst also getting into a better understanding of the needs of my body. The other times I have lost larger amounts of weight is during the periods of time where I have been completely unable to physically eat. I have had to have feeding tubes because I couldn't swallow safely and because I was more unconscious than conscious to be able to eat. At times the nausea consumed me entirely & some days this still happens as nausea is such a huge and primary symptom of mine that I continue to deal with everyday. Those periods were really tough and something I would never wish upon my deepest enemy. During those times I was not deathly skinny but I was struggling in many other ways. This has been hard. This still is SO hard. Weight & food are hard. No matter how little I eat these days I still cannot stand up, I still cannot walk around or run, I still cannot do exercises in sitting, I still cannot sit for any length of time and I am overall still a very immobile person. I cannot burn the energy of my intake on even my best day so for now it is near impossible to reach a deficit and loose weight. It is tough.

Some days I cope well with the new body I have and some days I just want to hide myself as it doesn't feel like me. I don't eat excessively and I have a generally fine diet so I feel I don't deserve the weight. It would be different if I sat here everyday and night with a big donut or maccas - then I'd graciously accept my current status. But this is not me and this is not why I have gained my weight. Honestly I feel a bit cheated. To be fair to myself I'm not a ginormous human and I'm not scary stage large but I am a very small and petite person and above all else, I am not comfortable with my weight and that's all that counts to me. It is my body and it is my right to have it as a priority on my challenge list,

 When I saw this picture quote I laughed so hard as I thought to myself YES YES YES this is me!!!!
I do think the only thing I can literally fit into are my earrings as every inch of my body is crawling with water retention weight and real weight. When I get down or sad about what this illness & it's resulting immobility and medication therapies have done to my body I need to stop and think about how my life would be without these medications. The answer is horrific. I would be lying flat in a hospital bed unable to even lift my head like I was for a long time in the beginning. During the difficult times it is hard to think logically about this, but the fact is my quality of life would be so poor without using my chair and taking all my medications. It could arguably be pointless and worthless, and much more depressing so for now, as much as I hate my new body, thanks to my chronic illness, I will just keep on striving everyday to get better. I will keep aiming to improve my function and in time hope to reduce or delete some medications. I will wake up and try to be grateful for what I have because despite all of this,  I do have a good life. I have family, I have friends, I have hope, I have dreams and I have a future outlook that is better than many. All of that is worth all the challenges and is worth continuing my fight to kick chronic illness and Dysautonomia is the butt! Big time!!!!!

If you don't laugh you'll cry right??? I think I'll laugh at this quote and dream about some high school outfit I might get back into one day.

How kindergarten helped me find my voice

Hospital life is far different from the real world. It's an insular bubble that people morph into and out of generally at a fast pace of days or few weeks. Most people come into hospital and can count on their fingers how many days they've stayed and can recall all events that occurred in their stay.
For me on the other hand it's all a big blur. If I think about the last few years stuck between the hospital walls I have many memories of highs and lows but still do not recount nowhere close to everything.
Along my journey I've been through periods of intense writing, weeks and months where I've kept track of almost every aspect of my day and then I've got gaps and voids where it all morphs into one.
I've got memories of so much, yet I feel sad that I've not done an honest job at staying on top of my recordings.
This last 4 years of life has redefined me as a person, but more specifically; a sister, a daughter, a friend, a woman, & a girl with a chronic illness. I am not the same girl who went in to hospital in 2010. I mean elements are still me, I guess I just see the world differently, react differently and my ability to have a voice has changed.

For the first few years my muma & dad were my voice. They spoke up for me when all I could do was lay in the bed completely still and without a pillow to prevent going unconscious. I had a rough experience initially when I was transferred to the private system with barely a diagnosis but assured that I "will be better after a few good weeks of rehab", clearly that wasn't the case. My Dr Poo overdosed me on a medication which left me unconscious for 2days and many more horrific things which I think are worth a post on their own eventually.

Over the years of battling the daily grind of hospital living I've managed to find my voice. Not totally, but definitely more than before I got sick. I've spent probably 90% of my time on the same ward, known here as Ward Hope. It's here that I developed my voice. I think when you're in a persons life long enough you get familiar, and that's what has happened to me. In some parts it has been great and allowed me to know the nurses and staff on a personal level and build some real lifelong relationships, but in other ways it has been difficult.
In a ward there are layers that dictate how things get done & who does them. I've always had a good relationship with my consulting Dr and I am so thankful for that. I've had good relationships with nurses although I have had 2 big challenges. I think the fact they were/are so mean and difficult has made me speak up.

In a situation like a long term hospital stay it feels like kindergarten when you've been placed in a play group with "that kid"...and "that kid" is nasty, bullies and hates you yet you cannot escape him. The play group situation in here is hard, especially where you are being forced to interact with people who you know to dislike you and speak about you behind your back. It can eat away at you. It most definitely ate away at me for a long while, especially when the person being horrible thought I didn't know what they were saying. Having to be kind, tolerant and suck it up has been a huge challenge at times but I've also found that I Can and have a Right to challenge things that are negative towards me. I don't need to feel even more isolated than a person already does whilst lying in a hospital bed and upset from a single persons views. No one in a vulnerable situation or any situation for that matter should feel belittled and bullied and we all have a right to survive harmoniously.

Before getting sick I was not a push over. I did have a voice but I was scared of how people would react. I rarely disagreed with what people presented to me as treating options or how my daily cares were run. I wanted to seem fine and my way of coping was to nod, smile and say 'ok, sounds good'. Over time I started to recover and with this I started to stand up...ahhh no, make that slightly sit the bed up 😊 and speak for what I wanted. I think about most patients in hospital or healthcare situations and wonder how many feel confident enough to fight for what they need?
 I am so lucky for many reasons but in this instance I think being a health professional myself (OT) and studying medicine has opened my eyes to see that the professional is not always right, and neither is the patient. They say knowledge is power and I agree. In the hospital and health situations the more you know about yourself, your condition and what you want & expect the higher the chances are you will be able to be heard. It's a difficult balance between professional Vs patient but once it's found in believe it can change everything for the better.

Nowadays I am confident and happy to be an active participant of my managing my care. I can now say I disagree with treatment options or request to trial something not mentioned. I will discuss my issues with nursing staff directly and not sit and stew over what has been said.
This has not happened overnight but has helped and I hope will continue to help me feel in control of
my life.
Everyone deserves to have a voice and be free to choose their health management. So ask yourself this:
Do you feel in control of your health?
Do you feel capable to speak up for what you want?
Do you believe knowledge is power?

Are you a bleeder???

Seeing as this week is my IVIG infusion week I thought I'd do a little post to explain what IVIG is, how it has been helping me & what you can do to help.

Since becoming aware of my extremely rare Autoimmune Dysautonomia diagnosis (AAG) I am undergoing regular blood transfusions of plasma and antibodies to fix my messed up body. This treatment started at the beginning of this year and has made huge advances in my recovery process, which has been exciting and positive.
I remain on a huge amount of tablets daily to control all the different systems that have been affected by the whole Dysautonomia both POTS & AAG. With both the medications and the blood I am in a seemingly good place at the moment which is pretty uncommon in my world. It has been a real blessing to have access to this most appropriate treatment that could get me further to better management than ever before.
The effectiveness of IVIG for me is very clear. If I look at my previous hospital admission or the times when I have had the exact same infection which had put me into a flare, based on previous experience I should and would be still in hospital. This latest admission of early 2014 had a predicted discharge date of no earlier than end of October 2014 at best. This prediction was made based on how sick I had been and how quickly I usually return to my basic level of function. But something different happened, this time I got home at the beginning of August and my team & I attribute that to the extra treatment of IVIG. My team of doctors have noticed the rapid increase in improvement and have decided I will continue to receive IVIG and high volume IV Fluids monthly until I am walking independently and unaided (no no walkers or wheelchairs etc) or if I am to stop responding well to the treatment other options will be explored. YAY!!!

The thing with IVIG is that it is super dooper EXPENSIVE. Due to it's shortage of supply via donors it makes plasma and antibodies both hard to attain and extremely hard to meet the qualifying criteria. Due to my condition being super rare (literally 1 in 1 million people) it is not on the qualifying list and seemingly impossible to be approved for by the Blood Authority of Australia. This was a huge hurdle in my mind when the treatment option was first discussed. Luckily for me I have a wonderful team of doctors who believe in me and have seen my struggles first hand so are willing to go above
and beyond & present their evidence and knowledge for me. It was with the help of a head of department at my treating hospital coming on board and willing to support my primary team to get IVIG that made this wish a reality. He took my case to the hospital board and they decided in favour of supporting my IVIG.
I literally cried. A lot. And then I felt grateful.
So blessed to have a medical team who fight for me & are patient advocates, I know this is sadly not the case for everyone.

In a quick description, basically IVIG stands for intravenous immunoglobulin and is a combination of plasma and antibodies from healthy blood donors administered via a vein. It is reported that it takes over 1000 blood donors to make one portion of IVIG, hence it's challenges in both obtaining enough and ensuring the blood product is only being used for specific purposes.

So here's a fact sheet about IVIG http://resources.transfusion.com.au/utils/getdownloaditem/collection/p16691coll1/id/236/filename/251.pdf/mapsto/pdf

I don't normally do 'preaching' posts but if I could educate one more person on my illness and the treatment I need to help get my life back on track I will.
Normally, all I ask of my kind readers is to enjoy my writings and join me on my journey to better health but today I am asking something more.
Blood donations have become a vital part of my life & will continue to be indefinitely, so I ask all of the healthy people out there to please take the time to donate blood. Every donation gets someone one step closer to recovery and in my instance, one less stressful minute worrying about whether some day resources will not be enough to cater for me.

Every single donation DOES save lives and for me, it's a chance to win mine back. 

EXHAUSTED is the new energised...right?

This last week has been busy yet again. I've had appointments with familiar and not so familiar specialists, I've been to non-medical appointments, I've had 2 sessions of OT & Physio, I've met with some people at home & I've had my lovely cousin from QLD visit which is always amazing to see him. It's also been Father's Day  to celebrate my amazing dad. I love him to the moon and back!
It's been a busy week, and here it is about to go again. Except instead of starting the week hopeful and ready to go, I'm tired. I'm so bloody tired.

Everyone is tired.
People go out and party - they get tired.
People go to work full time - they get tired.
People who work shift work -they get tired.
People who are athletes - they get tired.
People who are studying or at school - they are tired.
People who run a family - they are tired.

And me. I am always tired.
If you look at my daily life habits it probably seems beyond incomprehensible how somebody who has no strict or gruelling timetable can be tired or even comparably as tired as the other person, but that is so wrong in my case.
If I have a quick glimpse at the biggest daily happening for me they would include; waking up & showering, dressing and getting up for the day, going by transport to an appointment of some sort, returning home and organising lunch, doing a short time of exercises, leisure time and then finishing the day with dinner & nightly routine in getting ready for bed. At all of these daily activities & routines I have either a family member or nurse with me to help when needed. So this tiredness sounds both pathetic and unjustified right?!
I agree on paper it sounds pretty ridiculous. Saturday for example, I awoke at 8.30 and got ready for the day with my nurses then we had a really nice enjoyable family brunch and....I was out like a light asleep from about 12.30-3pm. I could've slept a lot longer but had something to do so forced myself to wake up (Ok, maybe my mum forced me to wake up. Big deal!). This was an especially fatigue filled day with no real reason. Well, No 'normal' reason that is.

My reason for being exhausted and fatigued everyday of my life is something unseen by the wider community and is simply a symptom of my health conditions. Fatigue and exhaustion are an invisible aspect of my invisible chronic illness and many other illnesses too. In my instance I'm referring to my fatigue being a direct result of my arch nemesis, Dysautonomia.
I can understand people looking at my life and being unable to understand just why I'm so tired and that's why I thought I'd try and explain one the most debilitating aspects of my conditions.

You know when you're having a conversation with someone about the busy week you've just had and you say to them that you're just so tired. The most common response to that in human nature is to reply in a similar fashion saying I know I'm tired too. And yes, both people can be tired, that's the honest truth. But when you compare the tiredness of someone who is seemingly healthy and fit to someone with POTS, their tiredness are on completely different levels.

If I was asked to describe my feelings of tiredness, I don't think could. The terms that seem to best fit with my feelings of tiredness are exhausted, drained and wiped out. Before getting sick I was a tired person too, thanks to college, late night chats, a few to many hangovers and the Uni life. But if I'd had felt this tiredness I'm in now, I don't think my normal tiredness would've been worth mentioning. Going from what I call 'normal' tired to POTS tired has been quite a significant change. I used to feel tired and then wanting sleep- having sleep and feeling a bit better but now the tired I feel is unrelenting and unforgiving. I have a sleep and wake up tired so then I have a rest...and fall asleep again. I'll then do something like physio or OT and be exhausted afterwards aswell. The worst is when I have friends over to visit and no matter how happy or how much I'm enjoying myself I sometimes crash and burn like it's the end of the world. The reason behind this though is not just me being a bit of a cop-out or lazy, it's actually part of the physiological changes that occur as part of the POTS & Dysautonomia trifecta.

At first I didn't know why I felt so differently tired than before and so reading more after I had my diagnosis it started to make sense. I got reading some medical journal articles and one of the bigger doctors in the autonomic community, Dr Grubb, put it very accurately in saying : 

"Patients may be severely limited as activities such as housework, bathing, and even meals may exacerbate symptoms. Recent studies have shown that many patients with POTS may suffer the same degree of functional impairment as patients with chronic obstructive pulmonary disease or congestive heart failure..." 
(from:  http://www.medscape.com/viewarticle/522421 ) 


 When I first read this I must say I actually couldn't even sit up or even turn my head at this point. These are still major issues for me now but I'm hopeful that I will improve as time goes on. Doing activities such as housework and personal care did not make me 'this' kind of fatigued prior to illness, infact there was barely a thought process in doing those tasks as they were just another part of living. But lying in my hospital bed it was made clear as the thought of doing any large movements was exhausting in itself. I was just existing. I was upset, scared and felt overwhelmed by this new diagnosis but in another way I was relieved. Sounds stupid right!? 
Yes, but no. As I was feeling so tired and sleeping away a good 18hrs+ of each day I was relieved when I found out that this type of fatigue I'm experiencing was linked to my illness. I worried 
because I am not a lazy person and I would give everything to be back to my old self but I feared people who lacked the understanding of my condition or knowing my fighting spirit prior to this would judge me. And you know what...I'm certain a few ignorant people have, so good riddance to them. Meanwhile my truest friends have stuck around and I can't thank them all enough.

The article talks about comparing the functional impairments of someone with POTS/Dysautonomia to COPD or heart failure. Crazy and scary! I've never been exposed to chronic obstructive pulmonary disease but I have done some research on it as part of an OT assignment at Uni. It sounds horrifically debilitating and unkind. To think that this level of exhaustion and fatigue are experienced daily by those affected with COPD and heart failure is saddening. Yes I'm tired and exhausted 24/7 but I do have better days and some worse, so I am thankful for that. Over the years I have most definitely experienced severe functional impairment but all I can compare me experiences too is how I've felt at my previous levels of function. 

So I meant to post this earlier but I was too depleted to get my thoughts organised and post this up. Today I awoke just as tired as yesterday, although I must attribute some of that to my sleepless night because I had a bug in my room on my wall and I legitimately cannot cope with creepy crawlers. Eeek! Today is a hospital free day for me & my only one for this week so I'm enjoying just being at home around my sisters & Missy dog. The downfall of being so tired all the time is when you slip into that delirious and no sense state . It's embarrassing, especially like today when we had a visitor over I started off on this tangent about hotel waiters and ester day told my sister that the car keys were in the toaster. Oh my!! 
The last few days have been extremely exhausting for no particular reason other than my completely dysfunctional body. I'm certain this too will pass and I'll be back to my usual sleepy state and have a much better ability to function & be coherent.
Today I might do some more research on ways to reduce fatigue and exhaustion as I could most definitely use some extra tips. Do you know any tips to help??

For now, sweet dreams & don't let the bed bugs bite!!!

xoxo

Expectations and a reality check

I am home again and happy to be here!

This week has been massively full of appointments, and meetings and honestly, not much else.
I've never had 3 specialist appointments more different within one week and it has got me thinking about why?
Did I have too greater expectations? Too little expectations?  Was I more interested or involved in one appointment over another? Why, why, why!???!

All the doctors appointments were made to be with professionals each at the same technical level as another within their specialities, yet why are the experiences for me so different.
What do you guys think??

Tuesday was a massive day!
It involved a trip to my autonomic neurologist who is located 2.5hrs away. The day started early with my carers arriving early to get me ready for the day. Thankfully I had 2 of the better ones on shift so things were actually done and I wasn't left hanging like so many other days. Once I was ready I began the torturous wait for the paramedics to arrive within time. I was pretty nervous about it all because last trip they arrived really late, with exactly 90minutes to make the 2.5hr journey. I was very stressed about it but luckily on that day I got 2 great paramedics who were both flexible and did me the illegal favour of driving a large portion of the journey with lights and sirens & a quick dip over the median strip onto oncoming traffic in the dense part of the city. Thankfully the crew on Tuesday arrived with slightly more time to get there than the prior trip but still had to drive at 140km/hr all the way, so it was a partial lights on trip.
Side note: As a once a proud owner of the cutest little black Echo, "Ecka's Echo" to be it's exact name, I get a tad jealous everytime I see the paramedics using the lights. By no means did or do I want to be in an ambulance under any circumstances but having the option to part the seas of traffic if I had made a wrong turn or running late would've been quite handy. For now though, I'm a full-time passenger in my big blue car which has been modified for transporting me whilst I remain sitting in my wheelchair. I'd love to sit in the car seats in the future but for now I don't have enough core strength & stability to do so, not to mention the fact I still cannot sit up outside of my supportive chair. No lights for my big blue car, what a bummer!

ANYWAY back on track....
This appointment usually happens every 3 months face to face and during the inbetween times my Drs communicate via emails & phone. I'm always hopeful going to these appointments. Mostly there is nothing outstandingly exciting like a drug to cure me (I wish!) but my Dr always seems to have a new viewpoint on something, whether it be; making medication adjustments, discussing exercise regimes, how I'm progressing, or adding other ideas for managing all of the different organ systems that have been affected by the autonomic failure. I always leave knowing just that little bit more about how to manage an element of my condition, so I look forward to what is on offer.
My doctor is a 'no shit' type of person and I love it. She calls everything as it is and is as blunt as a butter knife. I was first introduced to her mannerism when she started me on steroid medication upon my first visit and in response to me asking if I'd expect any changes on it she said "you're going to get fat, deal with it." Slightly shocked at the time but happy, as for me, that directness is fine and I like that she can sometimes see the situation black and white, raw and honest. The appointment this week was no exception. I always go into the appointment with my parents and 'Gretel' as support and mostly, whilst I have been in hospital, the nurse that has accompanied me on the trip has come in aswell. I love that in the appointment my doctor talks to Me. She looks at me, asks questions to me and is really only interested in what I speak about, as if no one else is in the room. I appreciate that she is very patient-centred and does not feel she needs to talk to anyone but me.

This appointment was a success. We discussed a number of things that have been happening and she commented that I looked much better than when I saw her last (3 days prior to my 2nd bout of sepsis in 4 weeks). There were plans put in place for medical tests to be run, a port to be placed (as I literally have no viable veins to cannulate and need to have an IV line at least 4 days every month), discussion over her opinion to increase a drug and a few other things. She had all the time to talk and I was able to ask any questions & so was my family. My sister, being a medical student aswell, always has a good chat about anything she's thought of which is great. At the end of the appointment plans were made for her to get in contact with my GI specialist, urologist, rehabilitation consultant and local neurologist. Then we made our trip home trip home which was another fast run which was wonderful considering how unwell I was and the thrilling conversation with the old paramedic guy who just wanted to tell me about his and his wife's tattoos the Whole time! Ahhh!!!!
Exhausted is an understatement of how I felt after the trip, but as I reflect on the outcome of the day, I am content. I feel my questions had been answered, I was respected and listened to, progress was happening, a plan was  introduced and medication options were open for exploration. I am at ease once again and ready to continue on my path of optimism. The best line my doctor says at almost every appointment is that she continues to remain "cautiously optimistic" at this stage, and that is fine by me!

 I hate mornings and I have NEVER been a morning girl. I feel violated by my alarm clock if it rings earlier than usual and on Wednesday it rang it's heart out. Still tired and recovering from the big trip and subsequent autonomic flare of symptoms I had to be at another specialist this morning. This time it was a dermatologist appointment at my major local hospital. I arrived just in time for the scheduled appointment accompanied by my nurse. I was looking forward to this appointment to find out what
this new and strange rash was and also have a check over of my current medications for my severe
 psoriasis, which joined the party when my illness presented itself. Once being seen by the admin staff we began our wait. We waited, and waited and waited... After falling asleep in my wheelchair I woke up after 1hr and 20minutes with my nurse still waiting. I had still not been called in for my appointment at this stage. Finally after another 15minutes a group of 3 third year medical students called me in. They then spoke with me very vaguely about why I was there. They didn't even ask about my medical history despite me sitting in front of them in a big electric wheelchair which I found odd. Enter Dermatologist Dr. He is clearly busy and rushing and I give him the reasons I am there. He tells me I most likely have an allergy to penicillin antibiotics and need to see an immunologist for further allergy testing just to be sure, he tells me I have an infection inside my nose, and finally he rambles out a complicated medication name I have not heard of and verbally spews a new medication regime at me in under 2mins. He and the unhelpful students leave in under 10minutes with a promise to return. My nurse 'R' and I sit in the consult waiting as I get more uncomfortable and dizzy from being up so early and after 45minutes the Dr walks past and says "Oh, I forgot you were there, sorry. You can leave." I reminded him he was going to prescribe an antibiotic for me so he does that and sends it in with a nurse and then we leave. It was an appointment that I felt furious, frustrated and excessively time consuming all for nothing. The whole event felt like it was an effort for this specialist to do his most basic job of consulting a patient. He was clearly a very educated and intelligent Dr but he was run off his feet and I was just another number in his waiting room. This appointment left me thinking about how is it that within 48 hours I have seen 2 consultant specialists in their fields & my patient experiences couldn't be further from each other. I started to wonder a variety of things

Was it because I was less important?
Was it because he didn't care?
Was it because he was too busy?
Was it because we didn't have a history?
Was it because I wasn't as interesting?
Is this the typical way this department is run?
Why?

I woke up the next morning and was mad. So mad that I got some guts and called the
dermatology department and spoke with the supervisor in charge. I expressed my frustrations and so she then followed up on my story and returned my call with a sincere apology about the poor management of consultation and re-scheduled me in for next Monday the 8th. Second times a charm right???  I hung up the phone and wondered if this next appointment would be worthwhile or different. I am still wondering this right now to be honest, but I will attend in hope of some transformation from sub-standard to acceptable practise.

My third specialist appointment was with my GP. My GP is lovely and kind but as far as knowledge of my conditions, she is clueless. Before getting sick I was living away from home and didn't really have a steady GP. I was relatively healthy and didn't need to have a regular person, so when I became unwell and was close to being discharged, my mum found a nice GP who was willing to be part of my team. Not only was he interested, intelligent and very good looking, I felt like he cared.
Unfortunately for me he had to move away and so I had to start over with another Dr, this time a lady whom I will call 'Dr B'. At first she did not want to be involved in my case and encouraged me to see another doctor within the practise, but I had done my homework and none of the others were suitable so I stuck it out with her. At my second appointment I asked if she would be happy to continue seeing me and she was much more at ease. As I've barely been home enough to form a proper relationship with her we are still working on it. The thing that's most surprising to me, is that every time I come in for an appointment, I run the entire thing. I come in with my list of medications and dosages I need scripts for. She writes them. I request blood tests that I know I need, the papers are handed to me. I explain to her I need a new referral update, it's done. Basically in any instance, I discuss an issue I'm having and then request and receive the necessary. It often feels like an interview or administration activity. I write a referral I need worded correctly and Dr B types it up on official paper and signs it. At every appointment I update her on the specialists I have seen recently and she comments on how she thinks I look great and then I leave. If I leave and then forget something I had needed it's totally my fault as I know I only get what I request. Sometimes I get very frustrated as I honestly think I could do all of this myself. I want to share this job of GP and not be entirely reliant upon myself to think for her. I do have a better understanding of my condition and my requirements surrounding that but I am not a trained professional. I do not know about everyday bugs and sickness that every human encounters and I am not equipped or educated in this. I am grateful that she respects that I am educated about my conditions but occasionally I would just like to pass-the-buck on the rest of the GP stuff and let her step up and take the reins.
Again I left this appointment thinking about how different these 3 appointments were and was I being unrealistic to expect similar standards of each professional or should I be adjusting to their ways?
I ask myself:
Is this is what a typical GP relationship is like?
Is this how 'it works' when you have a chronic illness??
Why do I have to be the doctor and the patient?

As this week has come to an end I look in my calendar to see that next week I have yet another 3 specialist appointments, this time with my GI specialist, gynaecologist and radiologist. I wonder how different these appointments will turn out to be considering I know one specialist exceptionally well, another this appointment will be the second meeting and the latter one I have never met before.
Should I expect a similar level of treatment and care?
Right now I'm not going to think much about it, instead I choose the option to remain cautiously optimistic and see what the week brings...

Do you expect the same standard of treatment from professionals at the same level in their career?

Bed 12 & a positive outlook

This time it's bed 12 for me. I'm back on Ward Hope but this time my bed is not next to a window. I remain in a 4 bed shared room but opposite the maroon door to the toilet. Just charming. Now I know why my roomies were always asking people to shut the door, looking into a toilet as a centrepiece isn't the most inspiring picture. I'm not overly pleased at being back in hospital but I know this will be only a short admission so I have no reason to complain. I'm sitting here thinking I have now been in every shared room except for 1 on this ward. During all the years I've spent here, each admission they have barely moved my bed numbers whilst the other patients move around me, which has been good.
With being in the one place I've enjoyed decorating it. I'm too unwell right now to find a picture of my best set up room but it was awesome. I had fairy light, stuffed animals, stickers, dream catchers, butterflies and pictures of friends and family everywhere. Now though, I'm happy to have an empty corner with no decoration as it signifies this will be a Short stay only.

This morning I was extremely nervous about returning to hospital. I hate it so much and although nearly everyone on my ward are kind and caring I always find myself warry of what they think. I wonder what they are saying behind my back and what judgments are being made of me this time?.?. Each time I leave hospital I think to myself and say a little prayer that this will be my final goodbye forever as an inpatient, but it never seems to work out.
In all of my previous admissions the shortest one to date has been 6.5 months. I know this one will be far shorter than ever before so I guess it's less daunting and upsetting, but it still saddens me.
I am currently sitting in my electric wheelchair tilted back and waiting. I'm waiting for many things but the 2 main things are my pressure relief alternating air mattress (that comes in from a company as most patients have typical mattresses and don't require one) and the other thing is the PICC team to come and attempt to put a cannula in to start IV infusion asap. My veins are completely shot to the point where no typical nurse or Doctor wants to attempt them anymore so we rely on the specialised team whose primary job is inserting IV lines to put one in for me. Mostly it takes around 3 attempts by the experts and ever so often a few get it in first go. The worst cannula I've had was recently when several attempts were made and then finally an on call dr got one in, in my index Finger. OUCHY but super impressed by it!!
Wanna see??

Ok so the cannula is in on the 3rd attempt so I can't complain. The lovely nurse Emily came & she's the best at finding my veins, this time was again proving tough as my veins like to run away and hide for some ridiculous reason. They've been overused and most have either blown or scarred so aren't a
good viable option. Again she mentioned the need for a central access, which seems to be coming up frequently the last few months. Admittedly I would much prefer not to be stuck multiple times every few weeks or days depending on the need so the idea of a more permanent access is not too concerning to me. Well...kind of anyway. My primary Doctors are quiet hesitant as my PICC line got badly infected resulting in sepsis a few months ago and because these lines go direct into the heart, the risk of infection becoming more serious is disconcerting. We will see I guess, so for now my little IV is doing a ok! 😊

It's night time now and my fluids are running smoothly and my air mattress is doing it's thing and keeping me as comfortable as possible. I'm actually pretty relaxed although a little sad too. As I'm
lying here all my kind nurses are breezing in and out saying hi and catching up on my gossip from home. It's so kind to have them be so caring towards me & interested in my life. Some of them,
despite being my nurses, feel like friends.  When I think about it, most of these people know me better than some of my closest friends and extended family. Over a long period of time like years in my instance, it is practically impossible not to know each other. In the real world not every personality clicks and that is the case here too. Generally the relationships between the nurses and myself are mostly that of totally raw & trusting relationships although there are always the inevitable person or few that I simply do not click with, but we make do.

So here I am back again after less than 1 month at home and they've made me feel the best I can about returning yet again. We've shared jokes about how I love the hospital Sooo much I just had to come back, or that I missed all of their faces & I was getting homesick from my second home on ward Hope so had to find a way to return. It's a jovious welcome and I appreciate them trying to make the mood lighter. The nice thing about always getting admitted to the same ward is that I know these people are on my journey and rooting for me to succeed and get my life back. It makes it so much easier having nurses who actually care about you!

It's been a couple of days since I picked up this post to write again because the last 2 days have been pretty rough, but today is slightly better at least. Tuesday I had my monthly dose of IVIG. This consists of blood products and is a big part of the reason I am going ok & made it home recently. It's a blood infusion of all antibodies and plasma from over 1000 blood donors per vial. I have a number of vials & it is doing wonders for my autoimmune dysautonomia. As a result though I end up with varying degrees of migraines, nausea and light sensitivity problems. This round of  IVIG infusion had proven to be similar to others before so having a nasty reaction currently which sucks. Lucky for me though the IV fluids have been running at a high rate non-stop for 4 days now...yay!  Much to my disappointment I've been having terrible sleeps thanks to some male patient in the room next door banging on his bed rails all night long. It's amazing how quickly my body has snapped back into my hospital sleeping pattern of awaking every 45minutes.
 Every. Single. Time. I was just getting into a better pattern at home and was sometimes lasting 2hrs before waking but it's all back out the window for now - another huge incentive to getting home asap.

Today I've woken up hoping to be significantly better, instead though my nasty cold is still lingering around with my nose completely blocked so I sound like a chipmunk. Thanks to my awesomely cement-like pillow, my nerve at the back of my neck is trapped again resulting in the return of my occipital neuralgia which makes my scalp numb and a big headache behind my left eye. These things plus my migraine, nausea and light sensitivity are making my day pretty gloomy.

Just to add salt to my wounds the ward rounds with the medical team have just been to see me. They can tell I'm not doing great so have further increased my IV fluids to help with my head and hydration levels. I mentioned to them that if all of my body systems are semi under control tomorrow I want to go home. The consulting Dr filling in for my main Dr knows me very well and told me not to push things beyond what my body can handle. It's the sentence I continually try to ignore. He said he is uncertain if tomorrow is best and advises me to stay as long as my body needs to recover even if that means into next week, booo. The team discuss calling the PICC team again to re cannulate before the weekend which makes me think now that I shouldn't be so hopeful, as it's not looking good to leave tomorrow.  The reason I'm so set on going is that I am supposed to have my physiotherapy and OT sessions and I really really want to get there - but if I'm feeling how I do now it's going to be physically impossible.
Wish me luck team!!!!!

I will write a better post soon with some funny patient stories and hospital musings. For now though I will stop writing and begin a stare off with yet another delicious meal, colour themed orange this time. Carrots, tomato sauce topping, orange stained cabbage and a so called vegetable lasagne. Hmmm...


xoxo