TPM - Training Plus merseyside

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17/10/11

Director Paula Hayes speaks candidly about life with Lupus

SO WHAT IS LUPUS? Lupus is an incurable immune system illness, probably genetic in origin and mainly suffered by females. Some 50,000 are now thought to have lupus in the UK - it's systemic, in that it can affect any part of the body and that's the danger.

tpm Director Paula Hayes has lived with Lupus all her life and despite many childhood illnesses such as sun rashes and very painful joints, was not diagnosed until she was 17. 

“I remember always feeling scared and frustrated; my GP continuously told me I had arthritis, but I knew it had to be more than that; I had lots of other symptoms that didn’t link to arthritis. Eventually a Rodney Street Specialist agreed to refer me for further tests which a month later resulted in a diagnosis of Sytemic Lupus Erythmatosus.

In 1986 practically no one knew about LUPUS and the prognosis was not very good, I was told my life expectancy was 5 years! I was quickly started on a drug regime (combination of 2 drugs) to get my Lupus under control, which it did and within 6 months I was leading a relatively normal life again.

Over the years there have been many ups and downs with my condition and my medications have changed many times.  I now suffer many manifestations of my Lupus and I have to deal with them on a day to day basis, such as Chronic Fatigue, Migraines and renal (kidney) failure.

On reflection I think the most important message I can give is that, I have never let my illness run my life, I worked around the Lupus and I do the things I want to do, Doctors said I wouldn’t be a hairdresser – I was for many years, Doctors said I wouldn’t have children – I have a beautiful six year old daughter.  You have to keep going, you can’t let it win!

Fortunately today we know a lot more about Lupus and the Liverpool Alder Hey Hospital has been awarded the UK’s first Centre for Excellence for Childhood Lupus

One of the biggest issues with my condition is that ‘its invisible’ – and many people assume that if you look well you are. I have come to realise that what’s important is, being honest with yourself and listening to your own body about when to slow down. These days I have a flexible working arrangement that means I work 4 days a week (I sleep on a Wednesday!) this helps with the fatigue, and the people I work with know about my condition and how it affects me.

Learn more about Lupus here…

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