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Holiday Blues and MND

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It's been a while since I last updated this blog. I lost interest for a while (which happens quite often), and I thought I had already moved past the grief stage of living with MND, but I was wrong especially during the holiday seasons. Christmas was quiet last year. Not the peaceful, candle-lit kind of quiet. The 'no family nearby, just the two of us and the two little doggos' kind of quiet. I live with MND for almost 5 years now, so quiet days aren’t new to me. But this one felt different. Since I lived here in NZ, I have always spent holidays and special occasions with friends, chosen family, really. Over the years, it became our normal. So when Christmas came and went without an invite or a “come over, it doesn’t have to be fancy,” it stung. What hurt more was the silence. I saw online that my friends had gathered for a lovely dinner party. All dressed up. Smiling. Together. And somehow, we didn’t cross their minds. I don’t think it was intentional. But it still hurt....
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Social Isolation and Motor Neurone Disease

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I want to discuss the touchy subject of social isolation among people with terminal illnesses, especially Motor Neurone Disease. I've been feeling socially dead for quite some time now, although I understand that not everyone may feel the same way. Perhaps some have a great support system or other reasons for not feeling this way. In 2021, I thought everything in my life was going great until I received the diagnosis at 34 years old. When I first got my MND/ALS diagnosis, I withdrew from the world. I didn't see or speak to anyone for quite some time. It was my husband who shared my diagnosis with our friends and his family, which I didn't mind because I didn't have the energy to explain it without getting emotional. However, I had to tell my own family. It was hard to explain what MND to them because they had never heard of the illness before. At that time, when I told them, I still looked "normal," so they didn't really understand the seriousne...
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Living Fully with Motor Neurone Disease

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It's been five years since I first experienced symptoms of M otor Neurone Disease , and now I rely fully on my husband as my sole carer . Accepting help was tough initially, given my independent nature and background as a former nurse. However, I've come to terms with my changing needs as my physical capabilities have evolved. I've noticed a lot of changes in my physical abilities over the past year or two. I mostly get around in a wheelchair and use a walker to get to the bathroom. My smile isn't quite the same anymore due to my weakened facial muscles, and my voice has gotten much quieter. But besides these physical changes, I've also noticed that I'm growing and seeing things from different perspectives. It's like I'm becoming a whole new person.      MND is not linear in its progression; it varies for each individual . But l earning to adapt to the environment is the best way to manage the condition.  It's not always possible to keep ...
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