"The blood specialist told me not to worry. But I started Googling and it frightened me to death."
"In 2016, I kept getting a lot of chest infections, my legs were hurting, and I was tired. I wasn’t eating well; I’d get home and hide my uneaten packed lunch from my wife so she wouldn’t worry. I was going to bed at 6 o’clock in the evening.
"I went away for work that September, and I’d never felt so bad in my life. I couldn’t get off the bed, I was sweating, I couldn’t stand up. I noticed red rashes on my legs and my wife suggested I go to a walk in centre after that day’s work.
"The GP I saw said I had sort of blood disease. I was told if I didn’t go straight to the hospital, I might die. If it hadn’t been for that doctor, I wouldn’t have made it through the night. A litre of steroids, two and half litres of antibiotics, and over 50 blood tests later I was diagnosed with vasculitis. They didn’t know which type of vasculitis it was*, and the blood specialist told me not to worry. But I started Googling and it frightened me to death.
"After I returned home, I was diagnosed with Granulomatosis with Polyangiitis (GPA), also known as Wegener’s Granulomatosis. They described the feeling as like having ball and chains on my legs, which was a good description. To me it feels like the constant sting of a stinging nettle in my legs and hands."
*Vasculitis is diagnosed depending on the type of blood vessel it affects
"Talking about it made me feel better. I spoke with someone online during the Covid-19 lockdowns and had six sessions of counselling."
"I think I’ve had everything thrown at me that is possible. I started struggling to read anything without my glasses as vasculitis has affected my eyes. I’ve had nerve damage in my hands in feet, gout, lung, and kidney punctures. I had brain scans and cancer check-ups because I was struggling a little when going to the toilet. I got ‘moon face’ from the steroids – my mother-in-law said she could have cried when she saw a picture of me because my face was so swollen. My memory is terrible, I have to write everything down and I sometimes struggle to pronounce certain words.
"My mum died in 2019, and I had to have two funeral directors either side of me when I carried the coffin because my gout was so painful. I can’t play golf, I can’t work. I miss my job – I was relied on by people and it breaks my heart that I had to stop.
"When I was at my lowest, I thought about harming myself. I’d try and to think positive thoughts; I’m not usually that sort of person, I’m always jolly and happy. I felt embarrassed when I told my wife and other people, but talking about it made me feel better. I spoke with someone online during the Covid-19 lockdowns and had six sessions of counselling. I feel good knowing that other people might benefit from reading my story and decide that they might want to share their feelings with the people around them too."
"I wouldn’t wish vasculitis on anybody, but I am always happy if I can be."
"My wife is amazing with me. I have lost my temper a few times, but she has been so unbelievably supportive. She holds my hands and says: ‘We’ll get through this.’ I have three children who are wonderful and four grandkids who keep me busy! When my first grandson was born, it was such an amazing moment, it lifted me up. When I lost every hair on my body, my granddaughter would ask to see my hairless legs and she’d be shocked every time. She’d say: ‘Grandpops, you have no hairs!’ The children make me laugh and there are so many good things in my life. I love my gardening but can only do a tiny bit, so my wife helps me dig. My daughter got married in 2022. All I wanted to do was walk her down the aisle and I was able to. Five years ago, we bought a dog called Tilly, and she has made me get out every morning. I’m 60 this year and we are planning to travel to Tunisia for a celebration.
"I don’t like to think of days being good or bad – everyone gets those. Some days I do feel bad, but then a few days ago I got up, and it was easier than normal, and I did a little jig in the kitchen. I wouldn’t wish vasculitis on anybody, but I am always happy if I can be."