To live with pain or illness every day can become wearying, depressing and often frightening. Everyone who lives like this wishes for one thing – to feel better. We might feel so desperate that when the chance of a cure comes along, we want to reach out and grasp it…
Category: Awareness
Awareness
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Life With Scoliosis – A Complicated And Painful Back Story
Someone recently asked me for a bit of a back story. I knew they were looking for a short bio but I did giggle to myself for a little while. If they had wanted an actual back story, well, it certainly wouldn’t be short. It would have been a long…
Awareness
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Myths About Coeliac Disease – Sorting Facts From Fiction
When I was first diagnosed with coeliac disease, I knew nothing about it therefore I had to quickly learn as much as I could. Along the way, I discovered that there were a lot of myths about the condition. Worrying myths which, sadly, some people believe to be true. Since…
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What it’s Like to Live With a Rare Disease?
If you’re a regular reader of my blog, you’ll probably know that one of the conditions I live with is trigeminal neuralgia. As well as being an extremely painful condition, it’s also rare. When you live with a condition which is classed as a rare disease, life can become even…
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Why People Need to Be Aware of Invisible Disabilities
According to the WHO, approximately 15% of the world’s population are living with some form of disability. A very large proportion of those disabilities are invisible. There are so many conditions which cannot be seen. Mental health illnesses are invisible as are fibromyalgia, chronic pain, trigeminal neuralgia, epilepsy, cancer and many other illnesses. There are actually more disabilities which can’t be seen than can. (Please click the title to read more)
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Why Blogging About Health Is So Important
Have you ever considered blogging about your health? I’ve often said that writing about your health can be good for you. It can be therapeutic. But as well as helping yourself, blogging about your health can help other people too. I’ve got to know a lot of chronic illness bloggers over the last couple of years. Many of us write to support other sufferers, educate and create awareness about our various conditions.
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What’s Life Like for Young People with Trigeminal Neuralgia?
Trigeminal neuralgia is classed as a rare disease and is often wrongly thought to only affect people over the age of fifty. This leads some doctors to say to young people who have severe facial pain, “it can’t be trigeminal neuralgia because you’re too young.” They are often misdiagnosed or even ignored simply because of their age.
But they’re not too young.
Trigeminal neuralgia does not discriminate.
Although it does mostly affect people over the age of fifty, trigeminal neuralgia can affect people of any age, including teenagers and even young children.
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Family Carers Need More Support and Gratitude
I write about living with pain or illness all the time, but today I want to focus on a group of people who play a valuable role in the community – carers. To be specific, family carers. Many chronic illness sufferers rely on a family member to care for them. Very often, what that family member does, goes unnoticed. But it shouldn’t. We should all notice. Family carers need much more support and gratitude than they receive.
Some people might just need help with putting on their shoes, picking up groceries or making meals, but many people couldn’t function without their carers. Those family carers give their time and energy out of love. They give up so much in order to take care of a member of their family….
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How to Help People Understand Your Pain
Pain is personal, isn’t it? Two people who live with the same condition experience it differently. That doesn’t stop them from understanding the pain they each live with. In support groups, people really do understand how the pain affects you. But do other people? Is it possible to help people understand the pain?
After I published this post this post to explain what trigeminal neuralgia feels like, someone told me that nobody understands the condition, so there’s no point in even trying to explain it.
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This is Why Trigeminal Neuralgia Needs Awareness
In my last post, I tried to explain what Trigeminal Neuralgia feels like through the words of other sufferers and a short video that I made. The condition is not well understood by non-sufferers. But it is also not well understood by some medical professionals. This, more than anything, is…