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MSWA Bulletin Magazine Autumn 2023

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CLIENT CONTRIBUTION My Name Is……… I acknowledge your suffering react to your feelings with sorrow I feel little or no sympathy don’t share emotional understanding I’m not in the same emotional position instead, I’m in a higher position My name is PITY. I recognise your suffering react automatically to your feelings I care about your suffering have an involuntary affinity with you I feel your feelings and provide comfort and assurance My name is SYMPATHY. I actively attempt to experience your feelings gain understanding through effort I have experienced similar feelings myself can put myself in your shoes I share your feelings and feel your suffering My name is EMPATHY. I understand your distress want to relieve your suffering I’m suffering alongside you am deeply engaged I strongly desire to alleviate your pain and actively attempt to relieve your suffering My name is COMPASSION. Author: Peter Jones, MSWA Client Penned September 2022 From the Author: I belong to an MS support group, have done for a couple of years. At our last get together the question arose about the difference between pity and empathy. I took it a little further and, after having done some research, added sympathy and compassion. Above is a piece (I don’t know that I could call it a poem) which explores the meaning and difference of the four emotions. FINDING FREEDOM THROUGH SUPPORT For 15 years, a task as simple as brushing her teeth or applying lipstick would leave MSWA Client Ellen-May Eaton in agony. Severe facial pain, formally known as Trigeminal Neuralgia, has been described as ‘the most excruciating pain known to humanity’* with the condition causing electric shocklike pain in the lower face and jaw. It is this invisible but debilitating condition, caused by the irritation of the trigeminal nerve, that overshadowed Ellen-May’s life until she underwent life-changing surgery 12 months ago. “It is such a stabbing pain, it’s like no other pain I have ever experienced,” Ellen-May said. “Even if you are lying down sometimes and you have got it, you think ‘ok, can I breathe now or not?’, because even that might make it flare up.” “Some people say if they get air conditioning on that side of the face, that will affect it, other times it happens out of nowhere, with no warning.” It was when Ellen-May was diagnosed with MS in 2009 that her MSWA Neurological Liaison Nurse helped to diagnose her Trigeminal Neuralgia, despite experiencing symptoms since 2007. Ellen-May initially believed these symptoms to be an extremely painful toothache that would come and go. For years, Ellen-May managed her pain with painkiller medications, which initially worked well but became unsustainable over time, as the episodes increased in frequency and duration. “I had to take more and more to dull the pain and that was all I was doing for such a long time,” she said. By chance, Ellen-May came across a Trigeminal Neuralgia support group which changed her outlook completely. “I would have been lost without them,” she said. “They are lived experience people and they demystify the language and the terminology because it is very specialised,” Ellen-May said. “I just found out so much information about all the other treatments and medications you can have, and the knowledge that you are not the only one who has it.” It was through this forum that Ellen-May found out about the various surgical procedures and names of specialists operating in this area. After further exploration, she then had the surgery called a ‘rhizotomy’, which she described as “freeing”. “I thought I was ok, coping with the painkillers and them not really making me groggy or drowsy, but I hadn’t realised how much it affected me until I came off them,” she said. “It was freeing of my headspace too, because I was always anxious about ‘oh, is it going to come back?’. I still have the memory of the pain, but it gets easier the longer the time is that I don’t have it.” “The surgery has numbed my bottom lip, but that for me is far better than taking all the medications I was on. I’d rather put up with this any day!” Ellen-May is now spreading the word far and wide in the hope of helping others experiencing facial pain, which can be common in people living with MS. “Because it is a demyelination of the nerve, quite a few people with MS have it,” she said. “Absolutely go to the groups and find out about all the options and find out about the current thinking.” Ellen-May welcomes other Clients living with MS and facial pain wanting to talk through the experience to contact her at The Trigeminal Neuralgia Support Group WA Inc meets quarterly in Perth and every 5 or 6 weeks in Midland. To find out more information, contact Julia McDonald (Perth) at or Julie Russell (Midland) at *According to the American Association of Neurological Surgeons OUR STORIES 18 19