In November 2016 I had a respiratory infection. A week later, I was still feeling very unwell when I rapidly began to lose the feeling in my feet, legs and all the way up to my waist.
I found myself having a life defining moment in the Acute Receiving Unit of Edinburgh’s Western General Hospital realising that something serious was happening and I did not know where it was going.
I was diagnosed with Guillain-Barre Syndrome, (pronounced ghee-yan bar-ray) a very rare and serious condition that affects the nerves. It mainly affects the feet, hands and limbs, causing problems such as numbness, weakness and pain.
These sensations can quickly spread, eventually paralyzing your whole body. The exact cause of Guillain-Barre syndrome is unknown but it is often preceded by an infectious illness such as a respiratory infection or the stomach flu.
Most people will eventually make a full recovery, although it can occasionally be life-threatening and some people are left with long-term problems.
I have been extremely fortunate as mine was a mild case in the grand scheme of GBS and the neurology consultant prophesised that by the end of a year I should make a full recovery.
It was a shock to go from a healthy, fully functioning, somewhat driven woman who led a full and active life to an existence in a medicated bubble where I could barely walk and the days and nights floated by in waves of pain and discomfort, numbness and phantom misfiring of the nerves around my body.
Once I began to emerge from the bubble in February and began a phased return to work, it seemed quite incredible that I had been ill for three months and did not remember much of what had happened.
I have the fortune to work for an organisation which treats its employees as “grown-ups”. The support I have received has been immense and I am now working my way back to full-time work.
I had never heard of Guillain-Barre Syndrome before it came to visit me and I have read a lot about it since. I have read the accounts of many who have had it and currently have it. There are Facebook pages where I have joined Guillain-Barre groups here in the UK and across the world. It is so rare that people who have experienced it find it helpful to share experiences. Social media has helped to bring “survivors” together and alleviate loneliness and fear.
I realise now that mine had been an enchanted life untouched by illness and disability until GBS and that there are so many others who are not as fortunate as me.
I have not engaged on any of the Facebook pages as I am humbled by the battle that those who write are experiencing. Their cases are so much worse than mine and their lives revolve around what appears to be constant anxiety about disability benefits and whether they will pass the next assessment.
Their fears about paying bills and having money to eat next month have made me think a great deal about how there seems to be so little in terms of safety-net for people who experience sudden illness.
It has also made me feel profoundly invested in the work that Indigo does for others. We work with various charities and causes and I now realise with so much more clarity how valuable this work is.
Felicity MacFarlane is an Account Director at Indigo