As she explains, her initial symptoms weren’t typical – yet three days later she woke up in intensive care. For Jacqui, from Durham, it’s been a long road to recovery.
“I woke up to see family from far and near round me in intensive care and thought, "I’m dying". The consultant explained I had meningitis.
“Three days earlier at 3am my husband had heard me thrashing round the room confused, vomiting and not aware. Not typical symptoms - but being a doctor, he recognised I had meningitis. Within four hours I had had a CT scan, a lumbar puncture, my first dose of antibiotics and steroids, and was unconscious in intensive care.
“Those three days were a rollercoaster for my family who were just relieved that I could see and talk to them, even though I was deafened and couldn’t even sit up for dizziness. I had a tube through my nose, a urinary catheter and bruised veins like a novice drug user. But I had survived - and I was going to get better through sheer determination.
“Because I was treated so quickly it was days before they could confirm I had pneumococcal meningitis, which meant continuing all the drugs. The high dose steroids gave me lovely pictorial hallucinations and kept me awake despite my desperate need to sleep. Even when they stopped I couldn’t sleep for more than a couple of hours, often disturbed to have more IV treatment. I was perishingly cold and then boiling hot. My blood pressure stayed high, my childhood squint returned and persisted.
Still felt curiously detached
“When I went home after 12 days I was weak as a kitten, spilled my food, couldn’t taste things and couldn’t find the words I needed, follow a conversation or remember things for more than a second. I still felt curiously detached as though at a distance from what was happening. Turns out I could only manage two steps upright and the toilet at home was further away than the one in hospital.
“I was very emotional - both overly happy and quick to cry, as well as a bit disinhibited and prone to lose my temper. I had lost my independence. Everyone said “listen to your body” - and I did. When it craved protein I ordered KFC, when it wanted to rest I had no option. Friends and family were great those first weeks: distracting and entertaining me, bringing food and treats. It was some months before we finished all the homemade meals.
“With no follow-up or information, I looked up Meningitis Now online and took myself to see a supportive GP. He said he would keep an eye on me but to expect to feel like every system in my body had experienced a shakeup and would be reeling for some time. Nothing came automatically anymore, and I still couldn’t do more than one thing at once. I was like a learner driver in the car.
“After eight weeks, although I was walking better I found I still wobbled like a drunk, so was seen by a neurologist. Small stroke-like damage can sometimes occur, but an MRI was clear so I carried on trying to improve. Because I could walk more and tidy and cook, I looked like I was getting better. Everyone wanted me better, me most of all. But it all seemed a bit superficial. I could only walk in flat shoes til I asked for a physio referral and was seen by the neuro-rehabilitation service, who said I should have seen them from before I was discharged. I struggled with putting earrings in and doing up fasteners as my fine motor control was poor.
Felt like I was going backwards
“A month later blood tests showed some liver damage and then my hair started to fall out. Both of these are not uncommon after serious illness, but they were upsetting and difficult to rationalise. It felt like I was going backwards. I went on planned holidays, which was fine if I wanted to relax, but tough when I had more to do. My mood and temper got worse and I was barely sleeping. Under pressure of any kind, I struggled.
“Five months after taking ill I started to break down. I couldn’t understand what was wrong with me, I didn’t feel like myself and couldn’t see why I had survived. What was the point? It was weeks before it dawned on me that I was depressed.
“I went back to the Meningitis Now website as I felt I needed specialist or at least informed help. When I phoned in desperation Tracey suggested referral to a Community Support Officer. Chris listened to my distress and explained that it can take a long time to get over meningitis and what I was experiencing wasn’t abnormal. She explored ways to help me feel better, starting with not pushing myself so hard and being more open about the problems I was having. Resources on the NHS Mind Zone and from the Sleep Council helped me to start improving the amount and quality of sleep I had and control unhelpful thoughts. I learned to roll with the bad days and hang on til the better ones came round.
Counselling made a real difference
“I told my family and friends that I wasn’t as well as I looked on the surface and how much that was affecting me, and asked for their help and patience. Many said I didn’t seem any different but those close to me had been on the emotional rollercoaster too and had taken a lot of the flack so I felt they should understand. I felt very isolated. I cried with relief when I looked on the Headway website at symptoms of executive dysfunction after brain injury and realised it described what I had been going through. The counselling I initially resisted has made a real difference as I can talk about the difficult things without upsetting others and I have learned strategies to help me cope better.
“It's eight months now since I went into hospital. I’m not quite the person I was before but that isn’t all bad. I have learned to prioritise a good sleep pattern if only because I break fewer glasses that way. I’m back doing my volunteer activities and walks. I am the queen of lists and diary management to help my memory and pace myself so I don’t get overtired.
“This was the year of the Dawn French ‘Me and You’ journal, which I changed to my saga and helped me see progress. I still get weary at times and frustrated with memory lapses or being able to knit but not sew (machines are more complex than they used to seem). I managed the Cambridge Senate steps to my son’s graduation. I was a proud, if bemused and exhausted, Mother of the Bride this summer. These were small, but significant, achievements for me personally. I’m multitasking again even if it’s a bit slower and I’m pausing to smell the flowers and savour life.”