is our weekly series, discussing invisible illness and living with a condition that other people can’t see.
She was diagnosed eight years ago but had been experiencing symptoms for around three years before she finally got answers.She adds: ‘The symptoms of vasculitis can be vague to begin with and I am not sure when the disease started, but I believe it was at least three years of visiting doctors with random symptoms before any sign of diagnosis.The turning point came when Jane developed a tooth infection and no matter what her dentist did, it wouldn’t go away.
‘It was an extremely painful and worrying process, and there were moments when I thought they wouldn’t find a specific reason for the way I felt,’ she says. Jane was told that after three to six months of high dose steroids and immune suppression drugs and then she would reach remission, but after a few months, she did not feel like she was improving.She adds: ‘My consultant said there was nothing seriously wrong and that I should get used to not always feeling right and that doctors cannot find problems for all aches. It felt like he was implying I was making it all up.
Unfortunately, although the drugs helped, she has never reached remission or been able to reduce her dose of steroids to below 7mg. ‘Another thing that really tires me is being with people – the noise, the focused conversations, the staying upright all leave me shouting out for a dark room with a big bed.
Source: Healthcare Press (healthcarepress.net)
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