RECOVERY Volume 5 Issue 2 | Page 4

Recovery ‐ Newsletter of the GBS Association of NSW            June 2016  My Story – Pauline Ralston   of IVIG infusions, 2 days off and then another 5. During this time my 3 sisters had a roster system going so that one was with me each day during the week, and my brother, partner and son at weekends. I was on holiday sailing the Greek Islands with my partner, his sister and her husband, somewhere along the way I picked up Hepatitis E. I was not aware of it until 3 weeks after my return, when I fell sick. After 3 days (Monday) I went to my GP who did a blood test. Next day I noticed putting one foot in front of the other was becoming a little strange. Although it wasn’t far, going back for the results I wasn't sure how I was going to get there and back. I managed to walk there but felt like a drunk person, by the time I got there I had to hold on to the reception desk and walls. I was transferred to a rehab facility and thought at the time that I should be home in a couple of weeks. How wrong I was. My sisters still had the roster system going with a little tweaking as they all had jobs. Sandra had Mondays off and Lyn had most Wednesday off. Both came down from the central coast, Kerry was there 2 nights. My brother Wayne came by each weekday to take me to the cafe for coffee and he took me to his place for dinner Wednesday nights. All this helped keep me sane. My friend Wynne organised dinner, heavenly fresh food, a number of times to be brought in. She has been a regular saviour, calling by and taking me for coffee. After a month there I had managed to slide out of bed onto a wheelchair and use a stand up lifter operated by nurses to take me to the bathroom, but it was felt I wasn't progressing the way I should be. So back to North Shore for an overnight stay for tests that turned out to be a month. He was mystified by my symptoms, I could squat but was very weak and definitely had trouble walking, I was given antibiotics for my hepatitis. I didn't quite make it back to my apartment. A lovely lady saw I was having trouble, took my arm and helped me back to my building. She asked for my phone number so she could check on me but being independent and proud I said I was fine and not to worry. Little did I know that was about to change. After many tests I had a biopsy, where a nerve was taken out of my lower leg and found my body was still under attack, this shattered me at the time as more than 2 months had gone by and instead of getting better l was still under attack. Towards the end of the month back there I was given 3 days of chemo and steroids and then sent back to rehab. Another month of exercising and still in a wheelchair I was practising with a long arm walking frame with supervision, my balance while improving a little, didn't enable me to be able to use this on my own. It was felt I still needed care so it was suggested I go into a nursing home type care, I had enough of hospitals and that type of care at this stage, even though the nursing staff were wonderful, and at the age of 64 told too young for most of the subsided care which is available. Nice to be told I am too young, not something I hear too often these days, but also not very helpful. I had a call from my sister Sandra the next day. She didn't like the way I sounded so she and another sister, Lyn, took the day off work and they drove down from the Central Coast. Before they arrived Friday morning, I got out of bed to go to the bathroom. My legs gave way and I collapsed on the floor where I remained until they managed to climb my courtyard fence and gained entry through a sliding door which fortunately I hadn't locked. An ambulance was called and I was admitted to hospital. I don't recall much of the weekend. I was on a drip. No one could work out what was wrong with me. I was told at one stage I had had a stroke, I kept telling them I hadn't. Some days went by and after blood tests, word came from North Shore Hospital asking for an MRI and a lumber puncture to be done as they suspected Guillain Barré. The tests confirmed it. I wasn't able to move and now there was concern about possible breathing problems, so I spent the next couple of days in intensive care until I was transferred to North Shore. Fortunately for me my son and his wife took me on for the next month, they have 2 little girls who kept me entertained and I was very well looked after. I spent a month there, having to be hoisted out of bed for showers etc. I couldn't even open packets of cereal or milk and I wasn't able to brush my hair. I had 5 days I was desperate to get my life back and went home for Easter, my sisters all came over the first day and night 4