“I will continue on this battle with strength and my Welsh humour and I hope my story helps anyone who is suffering in a similar way.”
Karen, from Cwmbrân in Gwent, was 37 when she first had viral meningitis in 2008. She has had it a further seven times since then but, despite the ongoing pain and fatigue, she continues to work full-time and remains hopeful for the future. She shares her story here.
“I was diagnosed with a rare form of viral meningitis in April 2009. This was the second time it was diagnosed and as you can’t get viral meningitis twice a rare disease specialist was able to confirm a repetitive strain called Mollaret’s Meningitis.
“In both 2008 and 2009 I was hospitalised on a drip for two weeks and my recovery took months, as my body couldn’t repair itself. Since 2009 I have had it a further seven times over the years. Luckily, I was looked after by a great specialist and the medication combination helps me live a life.
"Every time the attack happened it took a toll on my body though and my ability to bounce back. I was confirmed with Fibromyalgia and chronic fatigue syndrome (CFS) a number of years ago.
Battle to live a normal life
“This means I take a high tablet combination daily and battle to live a normal life or at least a life without pain and mobility challenges.
“I wanted to share my story as it’s an unheard of form of the disease and people don’t realise the impact this can have.
“I have to have a bath every morning to get my muscles moving. The fatigue can be crippling and the pain is challenging, even with the level of medication I take.
“However, I am determined to try and live life with a level of normality, so continue to work full-time as an area manager and no matter how hard it is I cannot let this define me.
"I am very aware that without the 10 tablets a day I take this would be a battle that I couldn’t win, so I am working alongside the illness so we can at least live relatively normally together.
“I wake up every day feeling unrefreshed, but the more you sleep the worse it is.
Give one person hope
“I am not doing this to say that everyone in my position can do the same, just merely sharing this because if I can give one person hope then it’s been worth it.
“Sharing my story at work really helped as I am a proud people manager and it’s hard to let people see the impact that isn’t visible. But it helped people and that made me realise that it’s okay not to be okay and it’s okay to be brave and speak up if it helps.
“I was told at 50 that the future could involve mobility aids, but so far nearly four years later I am still upright and hopeful for the future. I will continue on this battle with strength and my Welsh humour and I hope my story helps anyone who is suffering in a similar way.”
