Rebecca Jones' story

In May 2019, I contracted bacterial meningitis and sepsis as a result of an ear infection, resulting in hospital admission for three weeks. My symptoms were acute earache, headache, vomiting, light sensitivity and extremely high temperature. I dialled 999 because it felt that I was dying and I was taken by ambulance to St Mary’s.

In A&E, the doctor immediately realised that I had a life-threatening incident and I was fast-tracked to the HDU department and had an ECG and a brain scan. The doctors diagnosed my condition as probable bacterial meningitis. I was given intravenous antibiotics immediately and had blood tests. Whilst waiting for the results, my body turned purple/blue and I developed Sepsis.

Overnight I was monitored and the next day I was given a lumbar puncture which confirmed that I had bacterial meningitis. They also drained the fluid off my brain to release the pressure. I was admitted to the infectious disease ward. My treatment was a course of intravenous antibiotics four times a day for 18 days and intravenous steroids twice a day for a week.

The first week I was suffering from hallucinations, seeing dragonflies and Stevie Wonder and his back-up band. The side-effect of the drugs was intense concentration, like a highly stimulated brain. The symptoms of the brain infection are extreme fatigue, headaches, loss of hearing, blurry eyes, disturbed sleep, anxiety, depression, agoraphobia and low concentration. To date, I am still experiencing the side-effects which can appear to be invisible to other people, I regularly receive comments that I look well but in reality I am still suffering from the side effects, which people are unaware of.

I was discharged after 18 days and continued to experience extreme tiredness and low energy. I only left the house to go to the doctors and this felt like I was walking through treacle.

I was desperate to get back to work and persuaded the doctor to let me try a return to work plan. I returned in September, working from home, and managed to work 9 hours a week but this caused me extra anxiety, tiredness and headaches. After work, I had to lie down and it took a day or so to recover.

I was reviewed by my doctor on a regular basis and was not allowed to increase the hours I was working. I thought if I returned to work all the side effects would disappear, as I would be concentrating and putting all my energy into my job. It was difficult returning to work. I felt I had lost all my skills and I felt like a different person. The department was also operating in a way which I had no control over. I developed extreme anxiety which led to depression. I ignored the symptoms hoping they would all go away but they didn’t and I went backwards in my recovery.

After 6 months, the HR team advised me to sign myself off indefinitely so I could focus on my recovery. I had developed other symptoms which included anxiety, agoraphobia, word-finding and speech difficulties. A brain scan confirmed I had scar tissue, which had an impact on my speech. I was referred to a speech therapist at Talkabout speech Therapy to help me with my word finding issues and to work on improving my concentration. An ear specialist inserted a grommet in my middle ear this improved my hearing and reduced the constant buzzing and ringing.

A CBT therapist helped me deal with my anxiety and a psychiatrist helped me with my mental health issues. I am still undertaking regular therapy sessions to deal with these issues and have noted an improvement in all areas, especially my speech.

My experience of bacterial meningitis is that the side effects are often hidden to people. You can look well but underneath there is a cascade of issues that you have to deal with on a daily basis which have a spiral effect and can cause increased levels of anxiety and exhaustion. Every day feels long and if I try to do too much then I am unable to do anything for at least 2-3 days. It is frustrating that I can’t do the things that I would normally do as daily events are influenced by tiredness and energy levels.

Today I have not worked for 9 months. I still feel stressed that I am still unwell, and I haven’t yet returned to work. I am working on accepting the fact that I am still in recovery and I will have to be patient and wait for the right time to return to work. The psychiatrist has advised me to do some volunteer work and find a role where I interact with people.

I managed to find a volunteer role where I send postcards to self-isolating, elderly people with Dementia. I send 3 postcards a week and this has helped me with my word skills. I have also found a new volunteer role working in Oxfam one morning a week. I am enjoying this role and hoping this new opportunity will support me in my recovery, helping me to improve my concentration, build my confidence and reduce my anxiety levels. By doing one shift a week, this all helps with my agoraphobia as I physically have to leave the house to get to the shop.

I have now been in this role for a few weeks, I do feel more confident in talking and interacting with people, however I am still experiencing fatigue after the shift and I am now trying to work on reducing this level. With regards to going back to work, I am still not ready and have decided to concentrate on my recovery and not to think of the possible return date. I am now focusing fully on getting better and putting work to one side. The specialists have advised me to work on building my energy levels.