“I’m strong, I just can’t turn on the tap”
“I’m strong, I just can’t turn on the tap”
SDN AGM speaker Jools Payne, 10th June 2010
Jools Payne gave a very interesting talk to a packed audience at the SDN Website Launch and AGM on 10th June. Jools, aged 51 and the mother of three teenagers, is a sufferer of Rheumatoid Arthritis and talked about how she managed to continue running the home, bring up the children and run a Public Relations Agency (which takes up an average of 55 hours a week) despite her debilitating condition.
Jools’ Rheumatoid Arthritis was diagnosed 8 years ago, and she outlined the difficulties she has had to face. One of the initial difficulties was actually getting her condition diagnosed. After that, she has had to develop many strategies to manage the condition and carry on with her life. Considerable pain prevents sleeping properly and even turning over in bed, and makes getting out of bed, the process of getting up, doing ordinary tasks such as drying her hair or getting dressed for business almost impossible, so she relies on her children a lot.
Getting to know the aids that are available was another obstacle to getting on with life. Her capability at work was much reduced, which for a self-confessed control freak, was a bitter blow. No longer can she bounce into a meeting with new clients exuding confidence and capability (although she still wears much higher heels than I could manage!), and she has had to accept that running her business is now about the business survival rather than growth.
Jools is a very positive person, however, and she presented all this with humour and enthusiasm. She believes in the maxim “Assumption is the root of all cock-ups” and some of her anecdotes illustrated this. For instance, near her home in a one-way approach lane, she came head-to with a white van. Determined not to give way – they were going in the wrong way after all – a stand-off with much gesticulating on both sides (Jools will give as good as she gets!) resulted. Finally one of the male occupants of the white van got out and approached her; Jools cautiously opened her window just enough to be able to hear him tell her ... that she had left her shopping on the roof of her car!! Less funny are the assumptions that the disabled have to meet every day of their lives, for instance the retailers that assume that you can get into their shop doorway without it being altered.
Many people have suggested various routes by which Jools can improve her condition, and she has given them all a try. Homeopathy, acupuncture, herbal remedies and food supplements have NOT worked for Jools. EFT – Emotional Freedom Technique – and heavy pain killers have. So too have dietary changes. Jools visited a Nutritionist and was tested for food intolerances, finding that about 100 foods affected her, which she now avoids, including wheat. And drinking two litres of water a day helps too.
Jools has also found it helpful to look at other inspiring people who have to put up with even more than her. For instance Tammy Duckworth, the USAF helicopter pilot and Iraq Veteran (who lost her legs when her helicopter was hit by a rocket-propelled grenade). And she also finds poetry in “The Prophet” by Kahlil Gibran, written in 1923 (Wikipedia describes the book as ‘a series of philosophical essays written in English prose’) inspirational and calming.
Jools’ – successful – struggle will be all too familiar to fellow Rheumatoid Arthritis sufferers but to those of us who do not suffer from Rheumatoid Arthritis (or any other debilitating disease) and to those who are awaiting diagnosis, her talk was very helpful and inspirational.
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Taking a break between business and Jools Payne’s address.
A rapt audience
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