“It was a sunny day in Brighton and I was sitting outside at a fish restaurant with a number of colleagues, having lunch in the sun.
“I was feeling okay but others said I was looking pale and being a bit quiet – not my normal self. I then felt a bit despondent and as if I was talking slowly, even though I wasn’t.
“I didn’t feel like drinking and left the lunch and cycled home. When I got there I couldn’t remember the alarm code for my house – something that’s never happened before - and I was getting increasingly stressed trying to recall it. Eventually I managed to remember and let myself in.
“I was then hit with the worst headache you can imagine – like a thunderbolt exploding in my neck. I couldn’t bear the light and the effect it was having and covered my eyes. I was in a lot of pain and lay down on the bed. As soon as I did that I had to shoot out of bed and I was violently sick, almost continuously for the next three hours.
Pain was getting worse
“The pain was getting worse and I remember hitting my head on the toilet seat to try and stop it, to make it go away – the sickness was just pulsating out of me.
“It had been light when I first came home, but now it was starting to get dark and I was in the house on my own. For some reason I still don’t understand I tried to get into a hot bath to get rid of the pain in my neck – it was tormenting me.
“I don’t know how but I managed to look at my phone and get online to get a doctor’s phone number. It went through to the Medicare out of hours service, but it was difficult to make the person hear and understand me because I couldn’t stop being sick.
“The pain was like nothing else I’ve experienced or suffered before or since. Medicare arranged for a paramedic to come round and tubes were put in to try and stop me being sick.
“An ambulance then arrived and took me to hospital, where I was put in a secluded area. My levels were dropping rapidly and were all over the place – I was given fluids and morphine but it couldn’t stop the agony or sickness, which went on for two weeks.
Firebolt into my retina
“I had to keep my eyes covered because any light was like a firebolt into my retina. After four days in hospital I discharged myself and doctors came to my home to continue my treatment. But still every time I moved my head felt like it was not mine – it was horrendous. My recovery has been very slow and is not complete. I still tire very easily, my eyes are constantly bloodshot and dry and I suffer ongoing neck and head pain.
“I suffer from mood swings and am less patient than I used to be. I’ve lost hearing in my right ear and suffer from pain in my hands.
White streak in my hair
“I’m being very careful with my lifestyle now. I’m having physiotherapy, running again and watching what I eat and drink, but I still have awful headaches and have to take painkillers. I’ve even developed a white streak in my hair!
“I wonder sometimes if I will ever be the same as I was before I became ill.
“I suppose I should have stayed in hospital – I became dehydrated at home – but I was slipping in and out of consciousness and thought I’d be better if I was at home. I didn’t want to go back to hospital.
“My partner Finn was brilliant though in helping to look after me, and hopefully over time I can continue to get better. No one understands how serious this disease can be until it directly affects you. We definitely need more awareness and more education about it.”
