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Miranda's story

25th November 2020

Thirty-one-year-old Miranda, from Dingwall, in Ross, Scotland contracted meningitis in August 2020 during the height of the Covid pandemic

Miranda's story

She contracted meningococcal meningitis after getting leptospirosis from a mouse bite, and it has changed her life forever, as she tells us here.

“At the end of August 2020, during the Covid pandemic, I started developing new symptoms daily and deteriorated rapidly over the course of one week.

“It started with what I first thought was a migraine and I figured the cold sweats were just because I felt poorly. Rapidly these symptoms got worse. Light sensitivity was an early symptom and I couldn’t cope with the light at all. I then had neck stiffness, lower right back pain, exhaustion and other symptoms. I was laying in bed wrapped up shivering and sweating. My bedding was soaked from the sweat with a temperature moving between 39 and 40 degrees, yet I just couldn’t warm up.

“I couldn’t eat due to sickness. I was taking many medicines, which had no effect, and towards the end of the week I couldn’t even drink, despite taking anti-sickness tablets.

“The pain in my head and neck was incredible. Whenever I tried to lay down I would start having seizures so had to sit up. I was so tired, in so much pain, and just so poorly.

Couldn’t do anything

“My girlfriend at the time moved in as I literally couldn’t do anything and needed her caring for me and my pets. As the week progressed she became terrified at how I was and felt so helpless.

“I phoned out of hours on roughly the fifth day (Sunday) for help but they refused to assess me, saying they didn’t have the necessary PPE, as due to having a high temperature, this was considered a potential covid symptom. Instead they asked my girlfriend to collect another tablet from the hospital, despite me saying I could no longer take medications due to the sickness. We both felt so helpless and frustrated.

“The next day I contacted my GP surgery who again fobbed me off. By this point even my dad had become gravely concerned for my health and didn’t know what to do.

“On the Wednesday morning I was horribly poorly. Dad wanted to call an ambulance but I didn’t want hospital and wanted to try again to get a GP to come out and assess me first.

Do a home visit

“A GP phoned back and once I told her my symptoms, she said she would do a home visit. Finally I was being listened to. A few hours passed though, I was deteriorating by the hour, and again my dad just wanted to phone for an ambulance. I phoned the receptionist to ask when the GP was likely to visit as, if it wouldn’t be by lunchtime, Dad would be phoning an ambulance. The receptionist told me I was over-reacting by wanting to phone an ambulance and would be wasting their time, so to just wait for the GP who was busy with other needy patients.

“I cried so much after this call. I felt so ill, worse than I’d ever felt. My dad and girlfriend were terrified seeing me, and this receptionist was belittling me.

“An hour later the GP arrived. After a quick assessment she called for an ambulance and sent me to hospital. This is when I realised it was serious.

“At hospital they did lots of blood tests, a lumbar puncture, and confirmed to me that I had suspected meningitis, and was close to death so needed to start treatment immediately as they didn’t have time to wait for the exact results. I was put on both types of antibiotics with a new antibiotic drip going up every two hours.

“This set off my Crohn’s disease and I could not stop vomiting and having diarrhoea. The pain was incredible and the morphine just wasn’t stopping the pain. I was given regular anti-sickness through the vein too but again, it didn’t have much effect. I was really poorly.

“On top of this, my veins kept giving up and doctors were regularly called to put a new line in. After so many times they requested a midline be fitted as my veins were too weak and I badly needed this regular treatment, which was being disrupted by the veins giving up frequently.

Developed schizophrenia

“After this point, I don’t remember much. I developed schizophrenia from the swelling of my brain, scaring my family even more. I had become convinced the staff wanted me dead and hated me, almost leaving the hospital due to this before being calmed by staff. There were so many voices in my single room and I was so overwhelmed and basically going stir crazy.

“I also couldn’t shower due to anything touching my head causing me severe pain and triggering seizures. I wasn’t getting any better and desperately needed that midline. I couldn’t settle, I was sweating like crazy yet freezing cold, I couldn’t form sentences, I was talking rubbish, and I just wasn’t me.

“Thankfully after several days in hospital, and once the midline was fitted I started to show small signs of improvement. My results from the lumbar puncture started coming back and confirmed that it was bacterial, but they were struggling to identify the cause. Working in rescue though they believed it was related to an animal, so were investigating further.

“Once identified as bacterial, they stopped the viral antibiotics and I then had this given every four hours. My symptoms did start settling a bit and the morphine started easing the pain and the anti-sickness started helping. My Crohn’s was still in a flare but we were making progress.

Given the all clear and allowed home

“Three weeks later I was given the all clear and allowed home. It wasn’t over though as I returned for two false alarms for it returning, and had numerous symptoms to cope with. I was completely run down and could do nothing. Again my girlfriend remained to care for me and the animals, despite working full-time. She was my rock throughout. She kept me going. She helped me start the recovery process.

“Nine weeks on I have been told my meningitis was meningococcal, caused by contracting leptospirosis from the bite I got from a mouse when rescuing it from a dog. The mouse died after the rescue, and two weeks later was when the meningitis symptoms began.

“I have permanent memory loss, I struggle to get out words or sentences if I’m slightly tired and I can’t process information and find it overwhelming. I have full left side weakness with no sensation when touching my left leg. I have lower right back pain and at times it goes down the back of my leg, causing spasms which are extremely painful and I can’t bend at all.

“Before, I never got headaches but now I get them regularly. I have developed depression from my battle with meningitis and have had to organise a quick house move as I just can’t manage the stairs anymore. So many changes in such a short space of time. A trained teacher, I now struggle just forming sentences. Writing this has taken time and I have required help to do so.

“Had that GP fobbed me off like the other two, I wouldn’t be here today. Had they acted sooner, would I be left with these life changes? Who knows? It’s hard to think about. I feel I was badly let down. If it wasn’t for my dad pushing me regarding an ambulance, I wouldn’t have tried to battle to see a GP. I didn’t realise how seriously unwell I was.

Still recovering

“I am awaiting two surgeries but meanwhile I’m still recovering from the meningitis. I’m still trying to come to terms with what happened. I’m still trying to accept the life changes and adapt. I’m still getting flashbacks to when I was alone in that dark room hearing voices.

“Covid is causing meningitis cases to be missed.

This has changed my life forever. It has affected my mobility, my mental health and my brain function. I used to be full of information and enjoyed studying. Now just writing something like this takes time. I’m having to move home quickly to accessible housing, I have attempted suicide as I can’t cope with everything that has happened and is happening, I’m lonely, especially with Covid and being trapped in my home. The experience has scared Dad so much and left me with paranoia that I’ll get it again.

“I need so much help and support, which is hard on my family and friends. Life has just changed so much.

"But I’m lucky to be alive, I’m lucky not to have lost any limbs, I’m lucky I went to hospital when I did. Whilst the hospital definitely treated me quickly to save my life, I credit my dad the most for saving my life. Had he not pushed and pushed that Wednesday morning regarding the ambulance in the first place, I would not have phoned the doctor again.”