“Without the support of Meningitis Now through its Helpline, website and social media, I don't know how I would have managed.”
We’re proud that our unique support services are here for everyone who needs them, when they need them. With June being Pride month, Basil, from Barry, shares his story and how Meningitis Now helped him adjust to the magnitude of his illness.
“On Christmas Eve 2023 I felt awful. I found myself confined to bed with the lights off (it was too bright), a fever which couldn't be alleviated with ice packs or painkillers, hallucinations (although I didn't realise this was what was happening at the time), vomiting and stiff muscles. It felt like the world's worst hangover, but I'd only had one cider the night before!
“I stayed in bed all day, missing the celebrations as I battled with a headache which felt like my brain was trying to free itself from my skull and vomiting. I've never felt as physically weak as I did that night.
“I kept slipping in and out of consciousness. Again, I didn't know this was what was happening, until I woke up almost two days later in A&E with a nurse changing my IV.
My partner saved my life
“My partner saved my life by getting me to help in time. She would later tell me the paramedics claimed I might be doing it all for attention, as I lay unconscious on the floor and non-responsive. But that's a whole other story.
“The next two weeks I spent in the brain injury ward, with constant IVs and medication, missing New Year (and decent food!) as I battled the illness.
“Eventually I was discharged from the hospital in England back to my home in Wales, but due to the strikes there were no doctors to sign me off and I was left with no follow up plan, no after care and no mental health support. Just let out into the world a completely changed man with a whole new body to navigate.
Eye-opening 15 months
“The last 15 or so months have been eye-opening as I navigate the disabling after-effects which have changed my life.
“I had to alter my career and my social life, and my day-to-day challenges are many and complicated.
“Things like making dinner, grabbing a drink or going for a run, things I loved prior to the illness, are now intensely difficult and require modifications, help and patience from other people. I'm estranged from my immediate family, but my partner, her family, my friends and colleagues have been a lifeline as I learn to live with this new me.
“Without them, and the support of Meningitis Now through its Helpline, website and social media, I don't know how I would have managed.
Grasp the magnitude of the illness
“Being able to speak to someone who understands the illness and the after-effects has been incredible. GPs, doctors, even other well-meaning people don't quite grasp the magnitude of the illness and the life adjustment afterwards.
“Having someone listen to you rant and offer advice has been wonderful, and their help for my partner has also been great.
“I was also lucky enough to receive a grant for counselling, which I'm coming to the end of now, and whilst I am by no means ‘fixed’ without it I am not sure how I would have coped.
Meningitis has changed everything
“Meningitis has changed everything for me. I have had to rethink my career, as I previously toured with children's theatre. This was physically taxing both in terms of on stage/moving around the country every day, but that combined with the sound, the socialising, the need to memorise scripts and choreography became something my body could no longer deal with.
“I also struggle with socialising – bars are too loud, too busy. Shops are too bright and too noisy. That and my anxiety means I often have to over plan a simple visit to a friend.
“Day-to-day life has also changed a lot. My chronic fatigue, the constant headaches and migraines, leg and foot problems, sound sensitivity, brain fog etc makes daily chores and necessities so much harder. Without the support of my partner I wouldn't be able to eat, drink or look after myself anywhere near as well.
Not taken seriously
“It's a lot to deal with in my early 30s, to be essentially disabled by an accident.
“And because I look physically fit and healthy I find people don't take it seriously. I've been forced to slow down, to be patient with my mind and body, and as difficult as that is, it gets a little easier every day as I accept my limits.”
Meningitis Now is here for everyone who has been impacted by this disease. Contact our nurse-led Helpline on 0808 80 10 388, email helpline@meningitisnow.org or send a private message with the subject line ‘Helpline’ on social media.
