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:
“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”
(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 🙂 )