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L is for Life after meningitis

10th May 2024

It’s Viral Meningitis Awareness Week (6 – 10 May) and today we’re focusing on the letter L, which stands for life after meningitis.

l is for life after meningitis

Viral meningitis is rarely life-threatening although it can make people very unwell. But, even on the dark and difficult days, those who are fighting back against it can look forward to a day when they will feel better and can get on with their life, even if they need to adapt their expectations of what that life involves.

One person who has done just that is our supporter Tilly. She told us:

“I got told so many times that it was ‘only viral meningitis' and that I’m lucky. Of course, I know I am but I’ve struggled with no one realising how hard recovery was (and still is) and how long it has taken. No one prepared me for that.

“I want to use my experience to educate others and show how serious viral meningitis can be and how much your life might be impacted, but also that there is a light at the end of the tunnel and with time (a lot more than I expected), things will start improving.

“I now have to be more conscious of my health and not to push myself. I make sure I have enough rest and that I am doing all that I can to help my recovery.

More confident, more positive

“Now I feel a lot more confident and more positive about life. I still have days where everything is overwhelming and emotional, but the good days outweigh the bad days now. I am now able to do lots of things again that I couldn't do for months. I feel in a much better place both mentally and physically.”

You can read more on Tilly’s story here.

Others (and those around them) may need to adapt to a new life after meningitis. Our Community Ambassador Alison Westwood, who had viral meningitis in 2003, and her family are a case in point. She told us:

“After my discharge from hospital it became clear that I was going to take a long time to recover. The dreadful tiredness and fatigue, dizziness and vertigo, short-term memory loss, intense headaches and loss of concentration meant I was unable to function at home as a mum and wife or indeed in my job as a physiotherapist. Following very little progress towards recovery, a year later I was retired from my job ‘due to ill health.’

“At this point, I felt almost as though I had been bereaved. My job had gone. I couldn’t look after my children without help, wasn’t able to drive, was no longer earning any money and felt a failure. It took me almost a year to pick up the phone and talk to Meningitis Now, but the relief of finding someone who understood what I was going through was colossal.

Life began again

“The specialist counselling provided by the charity turned my life around and helped me to rationalise what had happened to me. Life began again. I began to learn to play the piano, became involved with the children’s school as a parent governor and also with the PTA, gradually building up my activity levels. I told my story to a couple of reporters from newspapers and magazines to help spread awareness of meningitis and also helped out over a period of time with street collections, fundraisers and other events in aid of Meningitis Now. I have also been a peer supporter of other sufferers for some time and hope to continue in this role.

“I have recovered much more fully than I ever thought possible at the beginning. Although I still feel excessively tired at times and continue to suffer from vertigo and dizziness, I have set up my own business as a professional gift wrapper, offering a gift-wrapping service, teaching and demonstrating gift-wrapping skills. I have demonstrated at the Ideal Home Show several times and even recently recorded an item for TV.

“Thanks to the loving encouragement of my family and support from Meningitis Now, I have made a good recovery from viral meningitis.”

Read more on Alison’s story

Read more about our Support Services and how they could support you. Contact the team through our nurse-led Helpline on 0808 80 10 388 or by emailing helpline@meningitisnow.org.

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