Doctors sent her straight to hospital, where tests revealed bacterial meningitis. The 37-year-old recounts her experience here.
“In January 2017 I was slowly recovering from a flare up of my neurological pain, exhaustion and migraine symptoms, which I'd suffered with on and off for a few years. I'd had a sinus infection for several weeks, too – it just wouldn't go away despite the antibiotics I'd been prescribed.
“Suddenly, I started to feel really rough again. The dizziness got worse, to the point I could almost hear it as well as feel it. I know that makes no sense, but it's the only way I can describe it! At the time I put it down to my other ailments and just thought it was a really extreme migraine. Over the course of two days, I became increasingly confused (I couldn't work out how to turn on the central heating!), unresponsive and I kept falling asleep mid-conversation. I was unable to get my words out and nothing made sense.
“My partner Gary was becoming more and more concerned, and called my parents to take me to the doctors. At this point all I could do was lie down and drift in and out of consciousness and I was genuinely unable to make a decision for myself. The headaches were blinding and I could see two of everything. I started vomiting quite violently and, seeing the state I was in, my GP sent me to AMU at Hull Royal Infirmary immediately.
Broken memories
“I have very broken memories of the next 24-48 hours, but my partner tells me that, at the hospital, I was unable to complete most of the neurological examinations and wasn't making a lot of sense. I can remember the doctor asking me to follow his finger, but I kept forgetting to do so. I can also remember seeing that the protective sheet on the examination bed was dripping wet from my sweat.
“The doctor explained to my partner that he suspected meningitis and I would need to be admitted and have a CT and a lumbar puncture. I can remember the agony of the lumbar puncture (not fun when everything already hurts!), and half an hour later being moved into a private room as the lumbar puncture was positive for meningitis. They started me on IV antibiotics and fluids and, for me, the world sort of disappeared for a day or two. All I can remember is seeing double when I did wake up, not being able to control my own legs when I was trying to get into a wheelchair, and a feeling of only being half-present in the world.
“A couple of days later, I was conscious more often and slowly coming round. I remember my partner visiting me and breaking down in tears. He told me he'd also broken down at work, and was struggling to cope with the thought of losing me. I think it was at this point I realised just how serious things had been. I was in this bubble of semi-awareness, whereas my partner had fully experienced every single moment of this illness and the danger to my life.
Struggled to cope
“My parents, too, had struggled to cope with what was happening to me but nobody at the hospital ever offered support to them or my partner, other than telling them that by day three I appeared to be improving slowly.
“I was moved to the infectious diseases ward at Castle Hill Hospital after four days (they had been waiting for a bed to become available all this time) and the care there was much better. The nurses and doctors explained things to me and to my family and we all felt a little bit more like we understood. My speech and ability to form sentences without getting confused slowly improved and the headaches became less intense. Eleven days after I was admitted, I was allowed to go home.
“I was told that it would take a few weeks before I felt well again, but not given any real advice about what to expect. I felt so exhausted, all of the time. Washing my hair became a massive task, which needed to be planned and factored in to my day. My short-term memory was absolutely shot, and I still struggled to formulate sentences. My legs were constantly turning a bluish-mottled colour, and my digestive system seemed to have shut down entirely.
Unexpected psychological effects
“The most unexpected effects were the psychological ones. I felt so low, but knew I should be grateful for having survived such a dangerous disease. My partner was probably more affected than me – he'd been through a traumatic time with me and simply didn't know how to feel. I think we were both in a state of shock for quite some time after.
“Work were starting to put pressure on me to go back, but I just wasn't well enough. The Occupational Health doctor they referred me to was extremely understanding and was, at this point, the only doctor to reassure me that the symptoms I was still experiencing were normal and to be expected.
“A week or two later I was forced to return to work on a phased return as they stopped paying me. I cannot describe how exhausted I was; and I couldn't work out whether what I was experiencing were post-meningitis after-effects or my other neurological symptoms. I started to become resentful of the life I had and felt that, having got through such an awful time, life should feel different, better somehow. I spoke to the consultant about all my ongoing symptoms, and he simply shrugged and said "That's meningitis!" and told me my memory issues may never improve.
Still have memory issues
“Twenty months later and I still have some memory issues. I struggle to find the words I want to use sometimes, and feel like my vocabulary has been halved. It can be a little embarrassing in meetings or when delivering training when I suddenly can't remember a word I use every day. I feel changed as a person. I can't describe this fully, but I'm different; I see the world differently and sometimes still feel less present in the world.
“My partner has been fantastic, but he has been left with a level of anxiety and depression, too. We have found ways to cope and improve our lives; art has always been my passion and I'm drawing and painting more than I ever have. I'd love to become an art therapist one day, and help others like me. I've dropped a day at work and I use meditation and yoga to help with the psychological impact of this traumatic illness.
“While I love the NHS and have so much appreciation of them – they saved my life, after all – I think my experience has brought it home that they simply do not have the time or resources to support people after meningitis
“I've only just heard of Meningitis Now and wish I'd been told of the good work you do 18 months ago."
