Claire’s journey to diagnosis took a few wrong turns before she was eventually diagnosed with non-specific vasculitis. She advises anyone not to be afraid to challenge medical advice and ask for a second opinion if you need it.
My story so far……!
If my letter helps just one of you then it will have been worthwhile!
I had been encountering some health problems for many years – persistent sinusitis, repeated chest infections, extreme tiredness and vitamin deficiencies. I always just put it down to not having a good immune system! Eventually I was hospitalised with Pneumonia, although I did not display the normal symptoms and didn’t respond to normal treatments. There was a lovely Professor I encountered within the hospital receiving ward who was certain I had vasculitis and wanted to immediately start me on medication. Unfortunately, the Respiratory Consultant didn’t agree and overruled him! I often wonder what the difference would be to my health had the Professor got his way.
One of the funniest things I remember is looking out from my hospital ward to a large cemetery below while being discharged and told, “You’re better at home, but make sure there’s someone with you in case you stop breathing!” You have to see the funny side!
My bloods are slightly unusual as I have a greatly elevated c-ANCA, but I am negative for the PR3 and MPO markers. My Respiratory Consultant could not decide on a diagnosis but was adamant it wasn’t vasculitis. I had to request another opinion and was referred to another Consultant at a different hospital. It took time and input from other specialties before Respiratory agreed that I had vasculitis. I would advise any person newly diagnosed with vasculitis to not be afraid to challenge their doctors and ask for a second opinion.
I was also referred to ENT, the Consultant advised a biopsy. Unfortunately, he started me on a course of steroid nasal spray weeks before the procedure which affected the results, showing a lot of inflammation. I was told not to be concerned and I was discharged. Eventually, after a few years, I was diagnosed with non-specific vasculitis affecting my upper and lower respiratory tract.
I work for the NHS education department, NES. My managers have been understanding at times and not at others. I have had some prolonged periods of sickness absence, which has caused problems at work. A lot of my team are not always understanding and can make inappropriate comments, even questioning my work ethic and my need to be off sick! I’ve explained my situation and the daily effects I experience, hoping to give them a better understanding and empathy. That’s a work in progress! I would advise anyone with Vasculitis to join a union and familiarise themselves with the local policies and The Equality Act 2010.
It can be tough at times living with a type of vasculitis, not everyone understands, or are prepared to make allowances for me. I can look well, even though I feel awful and can hardly breathe.
It can be tough at times living with a type of vasculitis, not everyone understands, or are prepared to make allowances for me. I can look well, even though I feel awful and can hardly breathe. I have a Blue Parking Badge and can get a lot of dirty looks when people decide I don’t have a disability! I do apply a moto I try to adhere to – Plan, Prioritise and Pace myself (my three P’s!). Does it really matter if the hoovering waits another day?! I try and see the funny side to things, and my husband enjoys making us laugh, often at my expense when I have my ‘dizzy’ moments! I do have to admit it happens a lot and I do deserve the teasing!
Since Covid-19, like many I was shielding and working from home. Healthwise, I have been doing well and working in my jammies – it’s great! I tend to just look decent from the top up! I’ve had no sickness absence from work and managing daily life a lot better. We’ve been lucky and had no Covid-19 experience, but I’ve still been cautious with what I do.
There is great support through the charity and the support groups give you an opportunity to speak to people in a similar situation. Above all, keep your chin up, be honest about how you feel and speak to your family and friends.
During my worst times, I found making jewellery to be therapeutic, gave me a purpose and helped fill my time. I enjoy doing these and donating them to the charity. It’s only a small thing, but it feels like I’m doing something. I would recommend finding a hobby and if it can be used to donate to the charity, even better!
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