The story of Veronica
My Story
Before October 30, 2014 I lead an extremely busy life.
I sit here six and a bit years on, with three rare conditions which include; Vasculitic neuropathy – Vasculitis, Auto Immune Encephalitis and Hashimoto’s Hypothyroidism.
Having “invisible” illnesses for me has been very taxing, often my friends haven’t been around, as they simply haven’t realised the hardship we face.
I have learnt slowly anyone with a rare disease must try to acknowledge what is their current “normal life”, and then look forward to understand the next positive steps.
Prior to my condition I believed that I was capable of everything, but now I don’t have the capacity to do everything”.
I have learnt to accept my new personality, and to accept that my capacity to do things no longer match. I guess I don’t feel I know the person way back then.
Daily life is a balancing act, and routine is the key to keep me standing.
It has taken me years to understand what is important as I was trying to fight it!!!
For me what works is scheduling sleep, focusing on mindfulness, light exercise which I hope may assist with my condition.
One of the most difficult aspects for me is not being comprehending the obvious, and as such I don’t function properly and become unwell.My short and long term memory is not great, nor is my hearing in the left ear, so when I cant recall a memory its frustrating but I have to try and move on.
By way of background I was working for a business that involved both domestic and international travel, that distracted me from my health and, I suspect, contributed to my illness.
I am married yet independent, I have a strong sense of achievement and was inpatient, looking back I was way too busy. I was very reactive and felt life was a juggling act. I cannot comprehend how I managed it all on so many levels.
The reality is these diseases have changed me and my life forever.
To quote a story I read from a fellow person with a rare disease “ it is like a faulty iPhone never charging beyond the 20% low power mode, constantly running out of battery”.
My other favourite quote I also read recently is this “A spoon equals a unit of energy, therefore you only have so many to serve up each day and need to choose how you use them wisely”.
I strongly believe that the amazing support from my Neurologist ,Immunologist, Endocrinologist etc, and further community awareness is the key to a recovery.
My conditions do at times appear overwhelming, even paralysing.
However, having a rare disease makes you sparkle and gives you a gift of self awareness, Inspiration and the understanding of what is important in life.