“Nothing is said by the medical profession about what the outlook might be, but I remain hopeful that these issues will continue to improve.”
“I contracted pneumococcal bacterial meningitis in July 2023, a few weeks before my 62nd birthday. I was fit and healthy, walking 15,000 steps a day and going to a daily gym class. In fact, I had been to the gym as usual on the day I took ill.
“I have no recollection of feeling ill that Friday night but could later tell from text messages that I had contacted a few people over the weekend saying I was feeling awful and had sickness and diarrhoea.
“By the Sunday night, my ex-husband became concerned that I was not responding to messages, and he sent our son, then 19, to check on me. He found me unconscious, called an ambulance and performed CPR. It’s heart-breaking thinking of him having to do that. I am forever thankful for his and his dad’s actions; they undoubtedly saved my life.
Scary for family and friends
“I was taken to Edinburgh Royal Infirmary (ERI) and was in an induced coma for 10 days. I had several lumbar punctures and was treated with antibiotics. My ex kept a diary over this period and, when I read it many months later, it really made me realise how scary this period was for family and friends.
“I was confused when I came round. I had trouble finding the right words to express myself. My vision and hearing were poor, and I couldn’t move my legs.
“I spent two months in the ERI, in the Clinical Neurology Dept. Over that period, my vision settled down but 10 months on I still have reduced peripheral vision, especially in my left eye. I was given a hearing aid for my right ear but I’m profoundly deaf in my left ear with constant tinnitus. I’ve gradually got used to the sight and hearing changes. The left side of my body bore most of the nerve damage – sight, hearing, left leg weakness. I also had some facial palsy on the left side, which gradually improved. My memory and cognition also improved though I still find ‘fresh’ memories being triggered by conversations with people.
Learning to walk
“After two months I was moved to another hospital, Astley Ainslie, for rehabilitation. Until this point, I had had limited physio, and couldn’t put weight on my legs. I was given a wheelchair. Being able to get around under my own steam, for the first time in two months, with some access outdoors from the ground-floor ward, was liberating!
“I had almost two months of inpatient physio, occupational therapy and cognitive testing. I progressed to using a Zimmer frame, and when I was discharged was given a four-wheeled roller. Ten months on since the onset of my illness, I am still using a roller while gradually learning to walk with a pronged walking stick (surprisingly difficult!)
“Since my admission to hospital, I have had an indwelling catheter, moving to a flipflo style valve after the first two months. I don’t think I ever questioned why I had this; I assumed it was because it was difficult to mobilise to a bathroom. But shortly before being discharged, a TWOC (trial without catheter) showed I had problems fully emptying my bladder, which can cause damage to the kidneys. So, the catheter remains, subject to further tests.
Identify and treat earlier
“Time-over, I would have wanted this issue to have been identified and treated much earlier. Similarly, I have nerve damage affecting my bowels. I find the bowel and bladder problems more debilitating than my limited mobility.
“Nothing is said by the medical profession about what the outlook might be, and I’ve not come across anyone (online) with similar issues. Still, I remain hopeful that these issues will continue to improve, or be successfully treated, over the coming months. I am also conscious that things really could have been much worse. I’m very thankful for the treatment I received from the NHS and for the ongoing support of friends and family.”
