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.