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MSWA Bulletin Magazine Winter 2022

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Farewell Sue Shapland | Pain and pain management series: Part 5 | MSWA's Employment Support Service | Tips for staying motivated over winter

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MSWA CLIENT SEEING BEAUTY IN DAMAGED WINGS MSWA Client Chelsea Hopkins-Allan painting a Helena Gum Moth, Opodiphthera helena, the first big moth she ever painted [photo by Luke Griffiths] Chelsea Hopkins-Allan is an award-winning artist living and working in Albany. Here, in response to our questions to her, she talks about painting, creativity, and how – for her – developing these things was a response to having an undiagnosed rare neurological condition called hypokalemic periodic paralysis (HKPP). What is hypokalemic periodic paralysis? HKPP in a neurological condition that impacts the regulation of the potassium levels in your blood. Potassium in your blood needs to be kept within a certain range for your muscles to work properly but various factors can cause it to temporarily drop too low. There are different types of periodic paralysis and related conditions. What symptoms led to your diagnosis? I had episodes of muscle weakness and paralysis. With HKPP, weakness can vary from mild to quite severe, lasting hours or days at a time, and can mean you can't walk without your legs giving out or lift your arms and many basic things can become difficult. Paralysis is like fainting but not losing awareness – you can feel, hear and see, and it can last hours. It is incredibly frustrating and quite frightening, especially when you don't understand the cause. Fatigue, mental fogginess and feeling unwell generally accompany the muscle symptoms (as your electrolytes are severely out of whack). I would wake up every morning feeling like I had a bad hangover! Every day was a struggle to manage the most basic things. Keep in mind – this is without treatment, so getting a diagnosis is vital! There are also multiple triggers that lower potassium in HKPP, that you need to know about to manage. (NB: These symptoms can vary somewhat for different people with HKPP. Some people only get paralysis in one part of their body for example or get less frequent episodes). Despite seeing over thirty doctors and specialists and a taking a multitude of tests, I didn’t get a diagnosis for over ten years. This meant I didn't get any medication, treatment, management support, relevant allied health services, mobility aids or NDIS. Many doctors told me it was purely psychological, despite the severity of my symptoms and my insistence that this was not the case, so it was a difficult ten years. I finally got a diagnosis last year and my life is changing dramatically for the better! 12

What was going on in your life when you first became unwell? I was 24 years old and working as an environmental scientist for a hydrogeological consultancy in Perth. I had a full life and a healthy lifestyle. Over the years, I had been to the GP repeatedly about my fatigue and mental fogginess. But after a few basic tests – like iron and thyroid – they would tell me I was fine, that I must be depressed! Even though I kept telling them it was the fatigue causing difficulties and worries in my life, not the other way around. Over the next few months, I kept feeling worse and bit by bit I had to reluctantly drop all my activities just to maintain my job. My health continued to decline and eventually I lost my job as I was too sick to work in the office, let alone pass the necessary medical for upcoming field work. One weekend around that time, I collapsed after trying to go for a short walk. That's when the medical tests, hospital and doctors’ visits got underway. What led you to painting? One of the earlier tests I had to get was an MRI. Inside the machine – with the rotating thump thump thump – I needed a focus for my thoughts. So, I decided to imagine all the things that made me happy. I recalled the time I saw a butterfly wing under the microscope at university. Their wings are covered in tiny multicoloured scales, like artwork in its own right! Just the memory of this made me feel joy, awe and wonder, in spite of the circumstances. It really helped me. And when the weeks dragged into months and then years with so many tests, doctors, hospital visits and appointments but no diagnosis – I kept making them. The paintings got larger and larger and more detailed. I wasn't well enough to work physically and I felt so exhausted and foggy, making art when I was able felt like the only thing I could do. I also started selling my paintings. How did your work evolve from there? A few years later, I heard a ‘thunk’ on the window and went outside to investigate. It was a magnificent big moth. It had shredded wings but it was still trying to fly. I thought it was beautiful despite its damaged wings. It felt like a symbolic reminder to have courage, keep fighting and trust myself that there would be answers in my health journey. I’d felt very blamed and shamed by many of the doctors for my health problems and this moth was struggling to fly but still so beautiful. I decided to make huge moth paintings of the species that came to my back door. It was really difficult given my symptoms at the time. I had to paint in short sessions. But I think I had felt so invisible during all these years of illness, I wanted to create something bigger than myself that felt powerful to me personally. Here were these incredible creatures coming to ME when I felt so cut off from wildlife and nature. It was just a matter of scale and perception. So I made them huge, showing all their tiny magical scales and details. That night, I decided to make a symbolic reminder of the butterfly wing-scales. Not with the intention of being art, just as a sort of visualpsychological tool to trigger these feelings to help me stay positive; as a reminder that the world is a magical place. Butterfly Wing-Scales No.46 by Chelsea Hopkins-Allan 13

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