A beautiful servant. A dangerous master.

                          

I feel like my whole life I have been easy going and a worrier to some extent. I worried about things that now seem so trivial to me its laughable but in the moment these were huge to me and how I felt. I am sure I am not alone, am I?

I think we all have our own insecurities and whilst they feel so big and impending in that moment, I now look back on most of them as nothing more than a memory or fleeting feeling or worry.

Some, however, last longer than others and stick with you for a lifetime. There are some that sit in the back of my mind and simmer away whilst occasionally boiling up to the surface, then resuming position in the background of the mind. Not always at the forefront of my conscience, but never forgotten. For me, these are the worries that sometimes make me rest uneasy and pop into my mind during difficult times. I don't know if I am alone in dwelling on these worries or if it is normal, either way though...it sucks.

My worries can range from the simple things like what to wear to an outing or my nail colour and hairstyle, all the way through to bigger worries like my body image that has changed so much from the girl I once was, how I look when I feel really unwell, whether people still see me as 'me' instead of just the sick or disabled girl, how my studies are going and my deepest worry, how much of a burden I am.
To my family, my friends, my nurses, my doctors, my health professionals, my university. My everything. I worry I burden everyone and that right now, I cannot change it. I hate it.

This worry is so strong  and deep it physically and emotionally hurts some days, whilst other days it barely crosses my mind. With my life so different and my illness being a key defining feature over the last few years I can't help but be saddened and worried that I have burdened so many people and I do not know how to 'fix' it. I don't know if this is a common feeling amongst chronic illness sufferers or disabled people or simply people who need a helping hand, but I can imagine it might be. For me it's the loss of independence and the unrelenting factor of having to rely on others in almost every aspect of my life that gives me this negative feeling. Some days I don't want to wake up to my nurses and struggle through the routine. Some days wish I could just go to the shops myself, or my appointments or make my own lunch and dinner or help out more around the house and just be normal again. I wish I had space. Instead I rely on people and it feels very burdensome.

No one has ever said I am a burden or anything to me directly, and I know in theory it is just a thought and nothing more, but it haunts me. I was so independent and useful yet now I feel useless and unhelpful. My life is such a contrast it almost feels surreal when I talk of the better days. Like I am telling the story of someone I once knew, rather than that of what makes up parts of me and my life story. So much has happened these last few years it is just hard to move forward and be 'okay' in my situation and the vast impact it has had on so many things.

Whilst I am slowly improving everyday, I still rely so much on so many it makes changing these thought processes difficult. I have always tried to ensure that my illnesses or being sick does not define me, but some days when I'm stuck in the thick of it I can think of no higher definition than this and this leads to the ultimate burden on everyone in my life, especially my amazing family.  It rules my life and is there 24/7. Maybe I worry so much because the other things that I like to think define me are 'things' in my life but are perhaps not as controlling and uncontrollable, so seem less obvious at times.  When I combine the worries of illness defining me and being a burden they are far more 'real' and scary than I can describe.

I would hate for people to pity me or humour me with their kindness because they feel sorry for me. I don't want to be 'that' burden you have to deal with to comfort me or your personal guilt. I want everyone to see me as more than just my conditions and limitations. I want people to want to be around me and be part of my life, as I do theirs. But I do not want to be the burden. I want people to see the whole me and choose yes, rather than choose yes because of other reasons. I want my life and my interactions to be real and for that I need to try to let go of this worry and find peace.

Hard. So Hard. I don't even know where to start.

I understand theoretically my worries are nothing more than my mind ticking over but every so often I feel like they win and they are my reality and my perspective. Mindfulness is hard and learning to deal with this guilt is harder. It may be a worry or thought I carry with me forever, but I hope not. 

The mind is a beautiful and mysterious thing - what will be my next worry?  Will it stay long?

I don't know but I guess thats the beauty and bane of humanity and our psychology, it knows no boundaries.

Lottery.

If you asked me two weeks ago what I thought of our health system, my answer would've been mostly positive. Although there are downfalls I have been lucky to have a few amazing specialists and team who support me, so for the most part I can't complain. 

If you asked me last week what I thought of our health system, my answer would be one of frustration and disappointment.

If you ask me today what I thought of our health system, my answer would be that it needs some serious improvements, but there are angels in this system....if you're lucky enough to come across one, that is.

At times health, healthcare and treatment are like a lottery. You might never win and have to fight the system your whole life or you might win after your millionth entry. You might win on your first go or you might have partial wins over time. No one has the same ticket and no one else knows how important this entry is to you. It's just you, hope and whatever gets drawn. 

Well after a good run of health, I got my kick in the butt and I'm over it already. Quite spectacularly I have fallen from my perch of feeling semi-human right into a new pile of rubbish. Who was I kidding when I started to think I had this worked out. 

During the past week or so I have witnessed and experienced what it's like to be desperate for help and stuck in the thick of healthcare lottery. Whilst I have been treated well and listened to, I have also had the fear of being put into the too hard basket, yet again. A place where no one wants to 'own' your problem nor deal with it. It is all just too hard and sadly for many people out there, it's also too familiar.

As a result of my new dilemma, when I sat in my specialists office last week I shed a tear. Normally, I try to be strong and objective and save my tears for private but this time I just couldn't. I was not crying because I was treated poorly. I was not crying because of my new issue. I was crying because I felt desperate and relieved at the same time. 

Did I get a cure? No. 

Did I hear what I wanted to? No. 

Was it good news? No.  

Would I leave with the problem resolved? No.

But what I did get was someone to stand up for me and show me that I count - Someone decided my number was worth pulling. This came as quite a relief because I had just experienced the polar opposite to this days before. I was told earlier in the week that I was booked into an urgent clinic and that they would help me, only one day later to be told that the clinic was not appropriate and has no expertise in dealing with my issue. That's it. No direction, just lost in motion. I felt like the system betrayed me and left me without the help I needed. I was terrified of getting lost in the system and forgotten as my usual teams do not deal in my new area of issues. There was no real 'go-to' person to help me or pull my number for the jackpot win this time, and it was frightening. I was shoulder deep in the healthcare lottery limbo and it was awful.

I was so desperate for help and I didn't realise it until I sat in the hospital and my specialist apologised to me for the way the health system works and acknowledged the difficulty for me to be dealing with another thing. With a few phone calls to other specialities and an hour of her lunch break organising appointments and surgery to help my new problem, she validated my desperation and she was proactive about helping me. This day I was lucky, this day I won the lottery. 

I was treated with respect and feel like the healthcare system worked for me, but in actual fact when I look back on it, the reality is, today I had someone in the right position fight to make the system work. The system itself didn't technically work for me at all. Now, I know I cannot really complain when I have a few amazing specialists on my team who I consider angels and I hear of so many people suffering, but I do think our healthcare system is broken. 

Had I not have a few wonderful specialists fight for me and help me through navigating a system of bureaucracy and hierarchy I would be worse of. In fact today because I had someone fight for me I have a plan and an appointment and have already undergone a procedure with a team onboard to help my new issue and continue my care in this area. Two speciality areas that seemed unreachable before were reachable because my doctor fought for me. If I had no one in the 'right' position to turn this situation around and be my advocate I would be stuck waiting and hoping for my lottery ticket to be drawn.

This week I entered the lottery that should not exist. 

This week the healthcare system revealed its flaws in brilliant colours. 

This week illuminated how lucky I am to have an amazing healthcare team who go above and beyond to help me every time my body throws a new curve ball.

This week and EVERY other week I wish that healthcare wasn't such a lottery and everyone 'won' every time they needed help. 

I DID IT!!!!

I have been holding my breath all month of February and it is with great excitement and happiness I can safely say I have made it.

I have made it through the biggest time specific hurdle since becoming unwell, which is getting through nasty February without being admitted for serious illness resulting in months on end stays in hospital. This milestone has been a long time coming and I have waited 6 long years to say February was A-okay.

I don't know if it's the weather, getting run down or a combination of everything in my life colliding with my broken body, but around February every year since I got sick, without fail I have spent in hospital and coincidentally gotten seriously unwell with infections or other autonomic issues and embarked on super long admissions. This year is different. Yes, I have been admitted during February but I am currently lying in my bed in my room, at Home typing this and it feels so, so good! 

It sounds like such a trivial thing to be celebrating but to me, it feels astronomical! I probably give it more significance than it deserves but I don't even care! I think my elation extends further than the cursed month because right now, I feel like I am doing really well. I am continuing to improve every month with my miracle treatment and have been able to start doing things I always hoped for but never dared to dream of. I am getting somewhere and I can feel the change is coming in some areas of my health.

It is not realistic to think that my life will follow a constant upward trend because, well, nobody's ever does, but right now I'm savouring this upward trend and trying to make the most out of it. Life with a chronic illness is so unreliable and I am continually learning this lesson on a daily basis. Despite the odds stacked against me, my family and I have been pushing and fighting for me to have a life beyond this illness and it seems like one day this could be more of a reality. Whilst this isn't something that will just go away with positive thinking, diet, life adjustments or medication (as of yet) this is something that is changing for the better. I am changing for the better. 

February is over and I am ready to keep kicking chronic illness in the butt. 

Limbo land

Limbo land.

Have you ever been at a party or outing where you're socialising and then slowly people break away and you're left alone with the decision of what to do next? Do you join a conversation? Do you get out your phone? Do you soak up the atmosphere and enjoy the solidarity? 

I think I have done all of those things depending on where I've been. All which have got me out of limbo. Limbo - it's that uncomfortable moment where you feel a hint of uneasiness and maybe even sometimes nervousness or apprehensive. Well, I'm feeling a bit like that right now but in a completely different context. My health rehabilitation pathway.

I have been doing the 'hospital dance' for the entirety of the last 5 and a half years and it has been a long, tedious experience. People have come and gone from nurses to kitchen staff to doctors to allied health, but my team framework has remained very similar. I have had a structure that has remained largely unchanged and a process that has for the most part, been slow but somewhat successful. 

I'm now facing a new experience where there is potentially a reduction in my allied health rehabilitation and I feel like I'm in limbo. It hasn't happened yet but it feels like only a matter of time and it will all be so different. So different from what I have known the last few years and so unknown. For the nearly 4 consecutive years I spent in hospital I had the same kind of routine that was almost identical every day and then since leaving hospital, my rehabilitation program has involved the same few days at the hospital seeing therapists every week. It has been a constant state with an ongoing and explicit goal of improving my function and independence. There has been times of uneasiness with shifts in direction but the task has always been clear and the path guided, none of this limbo business I'm beginning to experience now.

Although these services have not ceased yet, I feel like I'm in limbo because thinking about the changes has me wondering where to next? And do I want this change or not?  I think the worst part in this instance is that I honestly don't even know what I want. I desperately want to not have to attend hospital multiple times per week every week but I also don't want to loose the therapy I am receiving. In my subconscious and maybe even my conscious mind, reducing my rehabilitation signifies to me that maybe there is less hope. The fact that people are working with me to improve my function and life has always assured me that not only myself but others have hope of my recovery/improvement. With the services potentially being withdrawn what does that mean?

I'm told that reducing rehabilitation is a good thing because it means I'm doing better, which I am, but to me it seems quite the contrary. Yes, I am improving and making some really good gains in some aspects, but at the same time I still cannot do everyday tasks like sit in a normal chair or wheelchair for longer than 7-8minutes before losing consciousness or put both arms above my head for example, and that is frankly not good enough for someone in their twenties - not eighties!! I am happy people can see my improvements but I am concerned because in the scope of life and function, I am still severely limited and far more dependent on others than I am comfortable with. There is so much to work on and improve so is now the right time to reduce? Does anyone see it like me? Or is this all that is expected of my recovery? Should I fight to stay at this level or fizzle down and except a professional opinion? Maybe it is because I'm doing better? I don't know.

I don't know what I'll do with myself, nor how it will affect my ongoing journey and that  part has got me stumped. I have known structure and institutionalisation in hospital the last 5-6 years of my life so it is all just very limbo and I guess a little scary. 

It could be an exciting transition where I might be able to find myself a new hobby or work with external options and focus on my university studies or it could be a real shock and I'm a little nervous of the latter. Maybe this change should carry a positive connotation or maybe it is negative, I just don't know. 

When something becomes part of your daily life and health journey for so long, it is hard to see beyond the known. Limbo land here I come...I think.

Purpose

A wise man of eloquence once said that 'The purpose of life is to live a life of purpose'.

Well I think he is spot on.

I haven't had the best last month or so as I've been fighting some increased challenges with this faulty body but I think (and hope) that things have made a turn for the better and will continue on forwards. Over the last few years it has been a very rare, if not ever, have I had a month with something fun on every weekend. Well, this month that is changing and I am excited to have fun occasions nearly every weekend. To add to this, I have also just finished my second part time semester at university for the year. 

To say I'm a bit proud of that accomplishment is an understatement. 

I started Uni this year with much sadness and feeling a little apprehensive. At the beginning of this year I spent another long few months in hospital and was very unwell. As a result, I had to give up my place studying medicine and was forced to medically withdraw after years of fighting stay in it, which was devastating. Despite the deep sadness I felt, I knew I needed another focus and so had previously been looking into a Masters degree I liked the look of, so it was a logical choice to apply and try my luck. I wanted to have something other than health crap to focus on. I wanted to feel I had a greater purpose than just surviving each day, my health battles and watching Netflix and DVDs 24/7 (which I'm still guilty of). So I was accepted into my degree and the new journey began.

Throughout this year I have had many people say to me things along the line of 'don't worry about uni' and 'this isn't important' and 'who cares' and 'why are you doing this' but, to me, it has mattered a lot. To me it signifies so much more than just another degree. It may seem trivial and irrelevant from the outside and silly to focus on something aside from my health but it means more to me than I've probably shared with others. Obviously my health is my priority and my foremost goal. I still attend hospital and rehab 2+ days a week, have various appointments weekly, do my home therapy, exercise (within my limits) and work on improvements with my family and carers but it is so nice to have something else to do. To feel accountable for something that is more than just survival and getting by each day is really refreshing. It makes me feel a newfound sense of normality in doing something that hopefully will/could provide a future for myself and has me excited. I haven't loved every minute of my very part-time studies, but for the most part I'm enjoying the content and the feeling that it gives me to wake up and do something productive when I'm able.

 

Some days and weeks my body wins and all I can do is lay down and let the days pass by, but on the occasions I can do something I try my best to do it. I like that despite my future being so unknown and uncertain it gives me hope. I guess it's also like a hobby and distraction too which I can definitely do with. Escapism can be wonderful for the soul. So even though it was only 2-3 subjects, this year I started a new degree with a new hope of being able to just stay afloat. I have done just that and ended with awesome grades to top it off and I hope to do it all again next year.

Take that dysfunctional body!!! 🤗💪🏻✌🏻👌🏻.  Erika 1 - body 0 ...ok maybe not quite an accurate score but let me live in this moment 💁🏻

Meet my precious Pablo

Medical equipment is a pain in the butt! But given it's still Dysautonomia awareness month I thought I'd introduce you to one of my more hidden pieces of equipment that helps me get by.

His name is Pablo the power port and I keep him very close to my heart. Infact, he is actually in my heart (well the top of one chamber anyway). He is a central line and I love him! 

To give a very brief rundown, a portacath is a central line that is implanted under the skin in the upper chest which runs from a special septum into a catheter tunneled under the skin, going over the collar bone and then enters the large vein in the lower neck (the internal jugular vein) and then usually finishes in the superior vena cava. It appears as a small bump under the skin, and a small scar from the insertion. Most people probably wouldn't notice it's even there under clothes and it is quite discrete when not in use which I really like. 

I had to get a port or some form of central line because after years in hospital and countless blood tests, IV medications and treatments my veins have gone on a permanent holiday. They are completely useless, except for occasionally one little bugger in my index finger which can draw blood...but it's a pain and very unreliable too. It became too difficult to cannulate me and so we changed to PICC lines for a while, but I got sepsis from it so we decided on Pablo.

Yes it hurt, but the skill to place it =100%

I receive regular intravenous treatments so when we ran out of veins central access just made sense as the only logical step.  It is not a light decision to have a central line placed as it comes with huge and potentially life threatening consequences, of which I have experienced first hand. There are a few ongoing reasons that I needed Pablo in my life and they are all linked to my Dysautonomia. 

The most important reason I have a port is because I receive regular blood transfusions of plasma and antibodies in the form of IVIG, which stands for intravenous immunoglobulin. Each treatment I receive more than 5000 different peoples' antibodies which flood my own body and reduce it's ability to attack itself. This treatment is slowly but surely helping me regain some of my life and I couldn't be more grateful to the amazing blood donors, Red Cross and my amazing doctors who make this possible. We call it liquid gold in my house as it is so precious to me to have something that is finally allowing me to see some gradual improvements.
Another reason I have Pablo is because I receive IV fluids & electrolytes that increase my blood volume so that my body has more blood to circulate around which makes me feel a bit better. It is actually one of the most effective and common treatments used for POTS and Dysautonomia in general in America, and pretty much worldwide, but for whatever reasons, Australian healthcare makes it much more difficult to access (which I feel is ridiculous)! I am grateful to have some access to this, as the result of extra fluids pumped in intravenously for someone with my condition is that it increases the blood volume because the fluid enters directly into the bloodstream, which means I stay more hydrated and rather than the gut and tissues absorbing the oral intake or it being expelled, it helps to increase blood pressure and reduces tachycardia which feels reeealllllly nice! 

Finally, there are other things Pablo is used for are when I'm not well like receiving some medications and antibiotics etc etc.  Funnily enough, sometimes I, and others with central lines can actually taste the medicine that is injected into my bloodstream, which is both gross and weird. Crazy hey!! 

So as you can see, Pablo plays a very important role in my life and the great thing is he can stay in for many years to come as long as I don't get an infection or he causes me any problems. He is my secret weapon and one of my most important pieces of hidden equipment.  

Now, I decided to write this blog about my hidden friend as part of dysautonomia awareness month as I wanted to inform you that although my wheelchair and other bits and pieces may be obvious and not able to be easily hidden, they are definitely not the only things that keep me going. And I am certainly not alone in this situation.

Most people refer to Dysautonomia as an 'invisible illness' because many people can function and live their daily lives without obvious aids or equipment and appear seemingly 'normal' whilst often disguising their struggles. This invisibility should Not invalidate anyone's struggles. Something that this illness has definitely taught me is  that just because you can't see something, it certainly doesn't mean it's not there. 
They say that 1 in 3 people suffer from some form of chronic illness, which is quite amazing when you think about your circle of friends or family alone. That is a lot of people fighting and suffering in silence and discreteness. Too many people if you ask me. 
People everywhere around you are fighting battles you cannot see. Many people require different medical equipment and help in some form or another, that will be invisible to the naked eye. Dysautonomia is just one of many invisible illnesses.
 So I guess as Dysautonomia month is closing, this is my little reminder to you:

in any instance, just remember things are not always as they appear. Some people are fighting battles that we know nothing about.

Be kind. Be gentle. Be human. 

xoxo

The dirty "D" word that changed my life

This month is a very important month in my calander because October is Dysautonomia Awareness Month. This month is aimed to raise awareness and promote understanding and greater knowledge about a condition that has significantly changed my life since it began in 2010.

Because it is awareness month I thought I'd give a little run down on the symptoms myself and others with dysautonomia suffer on a daily basis. Whilst there is a significant range in disability and impact, there are many people fighting the good fight to kick some dysautonomia arse! 

I suffer from two forms of Dysautonomia, primarily Autoimmune Autonomic Ganglionopathy (AAG) and secondary to that, Postural Orthostatic Tachycardia Syndrome (POTS). Dysautonomia is an umbrella term for conditions which involve malfunctioning of the autonomic nervous system. There is involvement of both the sympathetic and parasympathetic systems, with 'automatic' functions of the body impaired. In my case, I have a very severe form of both, with no other known case of equal severity that we (my team) are aware of internationally...not a title I want to own, nor keep. 

So a bit about AAG.

AAG is a very rare condition, with limited research suggesting an incidence of 1 in 1 million. Basically AAG causes widespread dysfunction in all aspects of the autonomic nervous system, so things like blood pressure, heart rate, temperature regulation, breathing and many other 'automatic' functions don't work. Typical symptoms of AAG include, but are not limited to:

- severe orthostatic hypotension (very low blood pressure upon standing)
- fainting
- gastrointestinal dysmotility 

- urinary retention (neurogenic bladder)
- fixed and dilated pupils 

- dry mouth 

- dry eyes

For me, I live with all of the above symptoms to varying degrees depending on the day. Some days are managable  while others are really challenging which makes this illness very unpredictable and difficult to live with. I pass out/faint and loose consciousness after a maximum of 7 minutes in unsupported sitting (which is a HUGE improvement), my eyes need treatment multiple times per day for dryness, my mouth is an eternal desert, I have a bladder that has failed and ongoing GI dysmotility and symptoms. Other symptoms I experience are neuropathic pain, muscle weakness, deconditioning, dizziness, nausea and much more that I won't go into which just fade into the daily grind. All parts of what makes up 'Erika' and all hard work. Many of these issues can be hidden or disguised from the general public and fit under the category of an invisible illness, but unfortunately many of them I cannot hide making my disability quite obvious.  

                                                 

POTS

In my case, POTS is a symptom of my AAG, but brings its own significant challenges to the table. Researchers say that a person with POTS experiences a similar feeling to that of someone suffering COPD and congestive heart failure. For me, it feels like my body never rests. I can feel my heart beating in my chest 90% of the time, night or day and my heart rate rests tachycardic, at over 100bpm permanently despite medication, where a normal person rests between 60-80bpm. Upon sitting up, putting my arms above my head or rolling over my heart rate can jump to around 150- 200bpm on any given day.

While the diagnostic criteria focus on the abnormal heart rate increase upon standing (or even sitting in my case aswell), POTS usually presents with symptoms much more complex than a simple increase in heart rate. POTS patients often have hypovolemia (low blood volume) and high levels of plasma norepinephrine while standing, reflecting increased sympathetic nervous system activation. Approxiamtely 50% of POTS patients have a small fiber neuropathy that impacts their sudomotor nerves. Many POTS patients also experience fatigue, headaches, lightheadedness, heart palpitations, exercise intolerance, nausea, diminished concentration, tremulousness (shaking), syncope (fainting), coldness or pain in the extremeties, chest pain and shortness of breath. Patients can develop a reddish purple color in the legs upon standing, believed to be caused by blood pooling or poor circulation. The color change subsides upon returning to a reclined position. Everyday and even sometimes within hours my situation and POTS symptoms can change. I can go from my usual level of function to nauseated and dizzy in minutes and this fluctuation is not uncommon in POTS. It is an uncomfortable and highly debilitating illness.

                               

Whilst there is NO cure for AAG or POTS, for me there is hope for better management and better quality of life. It's all about finding a personal balance, and for me, keeping my frame of mind in the right zone to stay hopeful but realistic. As my neurologist says, we like to remain "positively optimistic". 

I will live with Dysautonomia for the rest of my life. It may progress, stabilise or somewhat improve - there is no set pathway and not enough evidence to truly know. I just thankful I am on the improvement pathway, rather than progressive for now. 

The reality is though, until more research, funding and interest is taken into Dysautonomia the struggle will continue for all of us affected. In Australia there are very few doctors aware of this condition which makes diagnosis and treatment extremely difficult and frustrating, often resulting in mis-diagnosis and lack of understanding. 

So spread the word people, it all starts with awareness!!! 

The more people who know about these horrid conditions, the closer we might get to a cure someday. 

xoxo


**Info taken from Dysautonomia International