Brenda's Story:
To view the piece on ITV Central click here.
In January I had an email from the RSA, asking me if I would be prepared to be interviewed by ITV Central News who were wanting to speak to someone with Raynaud’s during Raynaud’s Awareness Month. My first thought was ‘NO’ – I don’t like attention and I keep my hands hidden away, but after second thoughts, despite my misgivings, I said I would do it.
I then wrote down how Raynaud’s has affected me during the 40 years I have suffered.
At 16 I had pain in my fingers; they changed colour from white to blue to red and I was diagnosed with Raynaud’s. I had a sympathectomy which involved the nerves being cut at the top of my back. This did not help. I tried any number of tablets until about 15 years later I started taking Nifedipine, which does help. Some years, I stop taking the tablets in the Summer, but I then have to reintroduce them gradually taking only a ¼ for a few days, then ½ and so on untiI have built up to 2 a day. This slow build up helps me avoid the bad headaches caused by blood reaching all extremities including the head.
The worst time for my Raynaud’s was when my children were young, dealing with nappies and nappy pins, small buttons, taking them to the park, waiting at the school gate and carrying heavy shopping bags.
Over the years you learn to adapt how you do things, avoid things and also ask for help.
I wear thick gloves to go to the freezer, use Mycoal hand warmers when out in cold weather and wear lots of layers. Air conditioning, the freezer section of supermarkets, holding a cold glass or metal object, picking up coins or pins can all cause me problems. The pain if I knock the tip of a finger is excruciating. Over the years because of poor blood flow and so many ulcers, my finger tips have been permanently damaged. This causes problems even when my hands are warm.
Having thought through ‘My life with Raynaud’s’ I was now prepared for the interview. ITV were coming to our house – I was expecting a whole outside broadcast team with a large van, but in fact the whole news item was done by one person.
The reporter arrived with a large bag containing camera, tripod, sound equipment and a notebook. She was so friendly and put me at ease straight away. We chatted, then she set up the camera on a tripod, sat on a stool at the side and asked me questions and chatted while the camera was rolling. With a microphone attached to me, we then went into the kitchen where I prepared vegetables wearing rubber gloves and made a salad. The visit lasted about 90 minutes before she went back to ITV Central office in Birmingham to do the editing.
Anne Mawdsley, Chief Executive of the RSA was also being interviewed in a studio for the same programme.
I was informed that the item would go out a couple of days later, so I told a few friends and family to watch. It lasted about 4 or 5 minutes. Several friends who watched the programme said they were unaware of some of the problems I have. Even though I only told a few people about the programme, many others saw the news and rang me. I felt quite a celebrity!
To view the piece on ITV Central click here.