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

The truth about positivity

When someone asks about your day or your life what do you say? Do you give them a short concise answer or a long one? Are you truthful or do you mix it up a bit? 

For me and all people I guess, it depends on who we are speaking with and what we are willing to share. Something I've learnt since becoming unwell is that most people don't actually want to know the truth. They just want a positive, concise and simple answer. They want easy, so most of the time that's what they get. 

I think in many ways I've been on autopilot the last few years when people have asked me how I am. I almost always say "good" or "plodding along nicely," even when this couldn't have been further from the truth. Sometimes I say this for me and more often than not, I say it because that's what people want to hear. Most people don't want to know the tough reality of my limited life. The tears, the loss, the heartache, the grief, the physical and mental struggle, all of it - my reality.

I've found this really difficult at times because as much as I know the answer the majority of people want and need to hear, I want to tell the truth. The truth that it's not all roses and smiles. It's not always a story of courage or bravery. And it's certainly not a case of constant positivity and my own panacea. It's rough, it's tough it's raw and it's my life.

Yes I try to stay positive or at least put on a positive facade for the most part, but when people say to me "I don't know how you stay so positive" or "you're so positive I could never be like that" what they don't realise is I have no choice. No choice but to try. If I told the real truth of my family and I's last 5-6years I think people would be stunned and also scared and maybe even disinterested, who knows?! I don't think the majority would honestly want the truth, as it's not an easy reality to deal with and it's not pretty. There aren't parties and shopping or drinks and social comforts. It's just a story of an all consuming battle to win the war against my broken body.  

In saying this though, I do believe positive energy promotes a healthier outcome so I do try to stay positive. Celebrate the tiny victories and enjoy the simple pleasures I once took for granted. I do have good times and my life is not all doom and gloom. I try to find the happy and positive in difficult times and I think this tactic has got me through some of my darkest days.
But like all of us, there are times when I just can't. Times when I need to tell my truth just as much as others need a sugarcoated version. It is a constant battle in my mind when people ask how I am.  I feel like there is this belief that if your condition is chronic and you don't appear to be fighting it daily and remaining 'positive', you are seen to not be trying or whinging and succumbing to the illness.  It 
is that thought petrifies me. As much as it shouldn't mean anything to me, I do care what others think and it is especially important to me that my family and close friends know I have not, and will not stop trying. 

When the going gets difficult for anyone or if you just feel plain crappy, it should be ok to say how you're feeling. It should be ok to have days where the world isn't all smiles and lollipops and this shouldn't have to be hidden. Sick, healthy, tired, or indifferent we all have a right to speak the truth of how we are feeling to ourselves and to others. I don't mean live in a constant state of negativity as I feel that's a useless and tiring option, but I think we all need to remember it's ok not to be positive 24/7. It doesn't mean we aren't hopeful or are negative, it just means in that moment things don't feel so great.
I have trouble some days seeing any positives but I still believe we should all try to celebrate the smaller things in life as they are worthy of celebration. Small recovery victories or non-eventful days should  be reason to smile, not wait in fear of the next bad day or event.

Many people who have been very kind and dear to me throughout this whole process I don't hesitate
to speak my reality positive or not, but the majority of the beautiful caring
people in my life whom are supportive and kind I don't always know what to answer. Each time I subconsciously weigh up the situation and what is best, and more often than not, the best thing I can do is to answer simply with

 "I'm fine" 

"I'm doing really well and things are great"

Sometimes words of truth, sometimes a necessary lie. 

Positivity is not a constant state for anyone, so why do we expect it from all of us, both sick and well?

xoxo

Like a hoarder on steroids

Travel and preparing to travel is not a simple task anymore. 

I've never been the lightest packer but now there are even more necessities to pack, I have no choice but to pack like a hoarder on steroids. It's embarrassing! 🙈

But the exciting part in all of this is that recently I actually got to pack to go stay somewhere other than the hospital. Fun times!! 

I have a list saved in my iPad of everything I need to take for hospital admissions and I have perfected it down to the smallest details so I don't forget anything. It's a pretty exhausting and boring list but the good thing is I don't need to pack the medical supplies stuff or medications, as they're supplied by the hospital. When going anywhere else, I have recently discovered there is a lot more to packing and preparation involved in moving my little life. 

For a less than 24hour period of time away from home it took days of planning. 

Writing lists of what to take

Organising medical supplies to take with us

Organising enough medications and enough 'as needed' medications for unexpected or increased symptoms

Calling the accomodation ahead to let them know my physical disabilities/requirements

Organising the appropriate room with disabled access for my wheelchair

Making sure that the equipment I need will be available at the location

Checking on parking so we don't have to go far when we arrive sick from travel

Making sure that we are located close to the place I am going 

Double checking I haven't forgotten anything

Triple checking I haven't forgotten anything 

And so much more.

It's actually quite exhausting and honestly a bit overwhelming. I had a fast, fleeting but very enjoyable time away for my night and I'm so glad I got to do it thanks to my muma bear for taking me. We had no real mishaps and things went as smoothly as possible, which was really positive and gives me hope that one day, these little trips won't be such a big ordeal for me and my family in the future. 

For now though, things like this trip are the ultimate luxury and something I am quite proud of achieving. To stay anywhere but in the hospital or in my fully equipped home with all my bits and pieces is something that was far beyond an achievable reach until now. The reality is it is probably a long way from becoming a regular occurrence but knowing I could do it makes all the difference to my outlook. Although it takes time, planning and meticulous examination of details, it brings me one tiny step closer to living a semi-normal life.