Erika-Louise: New Normal

Dysautonomia has affected every single

I can’t remember the first time I ‘met’ Erika-Louise online. I just feel like I have always known her. We have chatted a lot over the time we’ve known each other and I am an avid reader of her blog.  Erika suffers from what is, according to experts in the field, the worst case of Auto-immune Autonomic Ganglionopathy in the Southern Hemisphere.  She has been studying medicine and describes her illness in a characteristically matter of fact way.  She’s not given to feeling sorry for herself, but I don’t think anyone would ever judge her if she did.  Her life is tougher than most. This post (with her sanction) is a bit of a mash-up of some of her blog writing so she can tell her story. She’s currently back in hospital and working on a gruelling rehab program and unable to write a bespoke post. She aims to regain the functioning she had worked so hard to achieve before another infection undid all her previous gains. I am always impressed with Erika’s true grit. She’s someone I admire and I am delighted to have her words here on my blog.  So, here she is, she’s one of my ‘Invisible Illness’ sisters-in-arms, a fellow blogger,and a thoroughly fantastic person.
Welcome to this edition of the Meet my Peeps Guest Series:

Meet My Peeps“I’ve been on the roller-coaster that is chronic illness for about four years now and it feels like a lifetime. My name is Erika and I am a 26 yr old girl from Australia with very severe Dysautonomia in the form of POTS (Postural a Orthostatic Tachycardia Syndrome) and AAG (Autoimmune Autonomic Ganglionopathy). These conditions have affected almost every system of my body negatively. Both conditions can be extremely debilitating and in my case they have been quite significant. Almost every autonomic function of my body has been impaired and I rely on a huge array of medications and intervention therapies to get by day by day.

It’s a life that I would never have imagined for myself.

I have spent a grand total of 6 months at home since 2010 whilst the rest of the time I’ve essentially been ‘living’ in the hospital as an inpatient. It’s sad to say it, but true; it feels like my second home.

I was admitted in early 2010 when my body decided to demonstrate the beginning of many autonomic problems. My first discharge was not until August 2013. I spent about 6months at home & returned to hospital in February with another nasty infection. And here I remain…

Dysautonomia has affected every single aspect of my life. It has also taught me so many things about; myself, my amazing family, who my true friends are and some unexpected saddening realities.
I’ve decided to write a blog as I want to share my journey, my trials and tribulations and my story. I have made a conscious effort to not become my illness, rather it be only a part of me. I don’t often go into any detail of my life and thought that this might be an avenue to vent, chat, express & be inspired by others in similar positions.

“As of right now, I cannot sit up unsupported, stand, walk & raise my arms without losing consciousness, every single time”.

Everyday life brings unthinkable challenges for me and so many others living with chronic illness. Having an invisible illness like Dysautonomia can be very challenging as people cannot always see the health problems and so find it hard to understand, empathise and relate to the new ‘me’.

My dream in life is to complete my university medical studies & live an independent life doing basic things like walking, standing for periods, doing my hair & other basic bodily functions that I will not go into.
I just want my life back.

Before Dysautonomia I was so….normal. I was your typical girl with everyday problems who loved to socialise and soak up life’s best offerings (including cocktails). I had completed my studies as an Occupational Therapist and commenced studying a degree in Medicine to eventually become a doctor. I had the strong desire to study medicine after going on my practical experience as an OT in both a hand therapy unit and especially a neurological rehabilitation ward. I wanted to know every detail of the persons medical history and how and why everything happened. It’s quite ironic now that I am lying here on a neurological ward where my ambition for further study started. I have had to withdraw from the course in spite of completing some of the papers from bed. It is heartbreaking.  You can read about that here.  I guess for now I’m still hanging onto the hope that sometime in the future I will get well enough to be physically and mentally capable of achieving my dream.

My beautiful family are my rock. They’ve all endured so much as a result of my illness. I am certain I could not get through this without each of them. All five of them are part of my team and help me everyday to keep hope and belief that things will get better. My mum is an inspiration. She has managed to be at my hospital bed almost every single day without fail. She works full time as the leader in a high pressure job and is always on the go. I actually don’t know how she does it all. My dad, another amazing man. He’s beyond caring & is always worrying about me. Between his full time work shifts and mums work he visits me any day he can, even when tired after night shifts etc. They both live at home with 2 of my siblings whilst my other sister lives away.

For now I take each day as it comes. I embrace the positives as much as I can and try to push through the negatives and make them work for me. Recovery and healing is hard work on so many levels and I will continue to persevere in hope for the next good day to come”

-Erika Louise

(Rach says: I’m sure Erika-Louise would love you to come and visit her on her blog.  As a fellow blogger I can say that there is no bloggy encouragement quite as fabulous as a comment when you are feeling discouraged 🙂 )

 

Rehab

I have been having a battle this year.  Increased time in my bed coupled with a strange kind of pelvic/hip/leg pain have meant my mobility is significantly reduced.  Intestinal Dysmotility complicates things further.  You can read about the battle here.  Like most things, I have been tackling it at snail’s pace.  There’s the problem of having a cast-iron appetite (seriously.  I don’t know why that is.  I spend most of every day nauseated but my love for food even surpasses that!) And then there is the issue of dizzyness when I am upright.  I spend my upright time on the essentials related to my kids and family.  It’s exhausting.  Riding my bike, which was possible even last summer, is out of reach for me now.

I saw my local doctor last week.  She was concerned about the way things are. More time in bed means less time weight bearing.  That means lower bone density and muscle wastage, further reducing mobility.  Less time moving means even my significantly reduced food intake, is still providing me with too many calories for my metabolism to burn off.  It’s a travesty that these tapping fingers can’t be my exercise, they work hard enough for all of me!  Except, apparently, that’s not an effective method.  So I need exercise that I can DO, for my whole body.  Recumbent preferably. Designed for me and for my specific needs.  My doctor suggested our local Rehabilitation Trust.

So yesterday I had a brilliant chat with Lynette.  She’s a clinical physiotherapist there.  Next week she is going to meet me in their gymnasium to do an assessment. We are going to come up with a plan.  I am already impressed with her.  I told her I had problems with my autonomic nervous system and she said “hydrotherapy might not be an option for you then.  Is temperature an issue?”  Oh my!  I love a professional who knows about the autonomic nervous system!

I’m cautiously optimistic!  Watch this space.  🙂

I thought it would be cute to put Amy Winehouse’s ‘Tryin’ to make me go to Rehab” song on this post. So I searched You Tube.  And this band Rehab popped up.  I clicked on a few of their songs and I was struck by the amazing variations of their lead singer’s voice, he can go from gravelly jazz tones right into sweet angel.  What a beautiful voice. The lyrics are all about drug and alcohol addiction.  Mercifully, drugs and alcohol aren’t my problem.  But listening to this song reminded me of times in my life when I have been dealing with addiction in people I love.  It’s a brilliant song.  So even though it’s got nothing to do with the type of rehab I’ve been talking about, I’m posting it.  I am a big believer that I should pay attention to what ‘pops up’ in my life.  So maybe, this song is for you or someone you love.
A little bit of random musical kismet.

Rehab:  I Can’t Catch Up To You.

 

The Sound of a Wild Snail Eating

I am a sucker for a beautiful book.  Creamy handcut pages, matt, art-print quality slip cover over the hardcover seriousness of a first print run.  And …a topic close to my heart. What a winning combination!

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Elisabeth Tova Bailey writes with fine detail and thoughtful delicacy about her darkest days battling an auto-immune variant of Dysautonomia, (Autoimmune Autonomic Ganglionopathy).  I discovered this book when an AAG sufferer mentioned it on a support group I belong to.  I was fascinated.  Of course, the snail analogy I knew was a good fit… but ‘the sound of a wild snail EATING?’….I was intrigued. I ordered it and I am so glad I did.  It is a beautiful little hardcover volume.  Physically perfect, laced with carefully chosen words, imbued with genuine feeling.  It’s a true story. It’s close to home for so many of us in the world of chronic illness.

One day, Elisabeth was an independent, educated person travelling through Italy.  The next she was struck down with a sickness that would change her life.  She didn’t have a name for it, she thought perhaps it was flu.  But then she was hit with paralysis and began to experience the autonomic dysfunction that would come to be her constant companion.  She became bedridden and all that her life had been was irrevocably changed.

But a chance visit from a friend, a pot-plant, and a little snail retrieved from the path was to change her life and focus once again.  Elisabeth began to take an interest in her new gastropod companion.  A snail may be an odd pet, but it was ideal for someone who could barely lift her head. She made careful observations and began to research whenever she could.  What she discovered, about snails and about her own slowly recovering self, is extraordinary.  This book is testament to her inner strength, to her sensitivity and intelligence, to her resilience. And to her ability to transcend the horrors of a debilitating illness and find beauty in the minute intricacies of the tiny world she inhabited.

Here is a sneak preview of some of Elisabeth Tova Bailey’s words:

“When the body is rendered useless, the mind still runs like a bloodhound along well worn trails of neurons, tracking the echoing questions:  the confused family of whys, whats and whens and their impossibly distant kin, how.  The search is exhaustive, the answers, elusive.  Sometimes my mind went blank and listless; at other times it was flooded with storms of thought, unspeakable sadness and intolerable loss”.  page 5

(regarding visitors) “I could also see that I was a reminder of all they feared:  chance, uncertainty, loss and the sharp edge of mortality.  Those of us with illnesses are the holders of the silent fears of those with good health”  page 39

(on the snail’s ability to go dormant) “How wonderful it would be if we humans with illnesses could simply go dormant while the scientific world went about it’s snail-paced research, and wake only when new, safe medical treatments were available.  But why limit such an amazing ability to the ill? When a country faced famine, what if the entire population could go dormant to get through a hard time in a safe and peaceful way, until the next growing season came around?”

Sigh.  If only!  I recommend this book to anyone with AAG, autonomic dysfunction of any kind or any chronic debilitating illness.  It is an especially important read for the people of these communities and one of the few books written by a patient on the subject of autonomic dysfunction.  Don’t expect to find detailed descriptions of symptoms and treatments, this book is a study in analogy, a description of the journey of the human spirit.  It’s a good read and worth tracking down.

Here is where I found my copy:
The Book Depository (free delivery to NZ and Australia)