Faces of GBS 2018 – Anne Hall
This is my face in 2016 before having GBS – Miller Fisher variant - for the second time. I woke on the morning of 31st December 2016 with double vision exactly as I had in 1984 over 30 years previously. This time it was triggered by pneumonia and the first time by a chest infection.
I’m 76 and live in Oxford, UK. I’m a widow with married twin daughters and four enchanting grandchildren. My reason for writing this is to encourage anyone else in a similar situation; both times I’ve recovered, although I was much worse this second time round (in intensive care for a month, on a mechanical ventilator then had a tracheostomy, feeding tube etc and populated by candida auris).
At my lowest moments, because I’d recovered before I felt I could do it again if I made the effort!!
A year has gone by and with the help of my family, friends and our great National Health Service, also a lot of effort on my part, I’m ‘up and running’ again with almost 100% recovery – just some minor tingling and a few balance issues which I can cope with.
I haven’t kept a diary, nor do I have any photos of my time in hospital or immediately afterwards, but many other GBS sufferers have and I think these are helpful for people currently battling to recover and show how we all have very different journeys. It truly is a case of ‘getting better slowly’. Both times I had the three typical MFS symptoms of abnormal muscle co-ordination, paralysis of the eye muscles and no tendon reflexes.
In the 1980s there was no treatment, we just had to ride it out, but this time I had two courses of IVIG which I definitely feel helped my recovery. So enough of me, I send all good wishes and love to all fellow GBS travellers – you can improve, stay positive!
