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Susan's story

31st October 2018

Susan Skinner, from Redhill, was in her fifties when she contracted viral meningitis for the second time in her life. Here she tells how help from Meningitis Now helped her get through a very difficult time

Susan's story

“In June 2016, I was diagnosed with viral meningitis for the second time - the first being August 2011.

Both times were shortly after particularly stressful events.

"I had been feeling unwell for about a week; headache, sore throat, sore jaw and a bit of a temperature. The day before, the headache got increasingly worse throughout the day. After work, I tried unsuccessfully to get some fresh air and walk it off.

“I tried to drive to my exercise class but now my head was hurting too much and it was difficult to turn it. I was thinking the symptoms were like meningitis, but I had no idea that I could get it a second time. I went to bed very early but, due to pain, didn’t get much sleep. In the morning, I rang 111 and was advised to seek medical help asap.

“At the hospital, I was holding onto my head to minimise movement and pain as I could feel the pressure building up. Following tests, scans and a lumbar puncture, I was diagnosed and later the same day sent home after being advised that it would take a few weeks to recover!

Signed off again

“The symptoms continued for months: feeling faint, loss of appetite, headaches, unable to cope with noise and bright lights, feeling the pressure in my head, poor memory and sensory overload. In September 2016, I tried to go back to work but struggled to manage the agreed two hours and was signed off again.

“In mid-October, I returned to work doing two hours for two days. A very slow phased return was agreed with the occupational health doctor based on our joint previous experience of viral meningitis. Meningitis Now had provided me with factsheets, which helped my employer to understand my symptoms and needs.

“I was pleased to be back but was literally just going to work then home to sleep. I had a few setbacks - including feeling too ill to increase my hours at different points. But eventually I did do my first full time week, eight months after diagnosis.


“Prior to being ill, I was very active, lively and happy. All of this just went. I felt very vulnerable, and now also had severe symptoms of depression and was having counselling.

“By November 2016 I was still having headaches and feeling the pressure build up in my head. With the help of Meningitis Now, I had my first appointment for cranial osteopathy. She was very gentle and kind, which was just what I needed. The cranial osteopath explained what was happening to make me feel the pressure build up. More importantly, she explained how she could help. Initially, I was exhausted after treatment but after a few sessions started to feel the pressure ease and the headaches were fewer and less intense.

“Eleven months after my diagnosis, in May 2017, was my son’s wedding. I wasn’t well enough to be involved in the planning and preparation and found that quite difficult to cope with. As the time neared, more than once I believed that I would not be well enough to attend ‘The Big Day’. I struggled with fatigue and sensory overload at the reception and only managed one dance (most unheard of!). But I enjoyed the service and was fine for the photographs and a quiet chat in between, for which I am very grateful.

Advice and support

“I haven’t fully recovered to my former self, continuing to have headaches, poor memory and extreme fatigue. Along with muscle pain, this was diagnosed as fibromyalgia in February 2018. This is believed to have been triggered by the viral meningitis.

“I have rung the Meningitis Now Helpline a number of times and truly appreciate the advice and support - especially in the early days when I was finding it very difficult to cope. Having the suggestion and funding for the cranial osteopathy was a lifesaver for me. I was so desperate to gain some relief. Having the factsheets for work helped the dialogue for my needs and they were pleased to have that knowledge and understanding to be able to help me. I also truly appreciate the patience of the helpline staff when I rang and basically just cried down the phone.”