Thursday, August 22, 2013

TN Awareness

When I was a young girl, I was forever writing to television shows and magazines, normally entering competitions, but never got a reply.

These days, I am forever writing to numerous television shows, newspapers and magazines trying to promote TN awareness.  I still don't get replies. But I will keep writing.

It is so difficult trying to promote something that nobody seems interested in. Even the World Health Organization are not interested in it. However, there is a petition to try to change that. If you haven't heard of the petition, you can sign it here. (It costs no money to sign.) If W.H.O. actually become interested, it could change things.....there could be funding for education, awareness and even research. If you haven't signed it, please do so (even if you don't have TN).

There is so much going on at the moment to do with TN Awareness. There are more and more blogs appearing, so many support and awareness groups on Facebook.

A friend will be doing a Twitter chat about TN with Treatment Diaries on Twitter on the 27th of August at 8pm ET. If you want to read about it, you can check it out here. Being in the UK, I might not manage to watch it live, but hopefully will catch up the following day.

This year, there will be a TN awareness day. For the first time ever.....an International Trigeminal Neuralgia Awareness day on Monday, the 7th of October.

Our own End Trigeminal Neuralgia  awareness page has grown more than we ever thought it would, with just under 2000 followers at the moment. We also have a private support group on facebook which is also growing, and of course, we have our End TN blog and our videos on YouTube  We're on Twitter, Tumblr and Pinterest. We are about supporting people, both sufferers and caregivers, creating awareness, and making information files for people. If you haven't looked before, you should check the Notes section on the awareness page.

We pretty much have social media covered. It's mainstream media which we have a problem with.

What is it that decides if a story is worthy enough to make the news, or a national newspaper? How do people get a story on to a TV show, or even a magazine?

Trigeminal Neuralgia is a horrible, cruel condition. The awareness is essential. If you are reading this, and you have any suggestions how we can get awareness to a wider audience, please let us know.






Saturday, August 03, 2013

Smile, and the world smiles with you, cry and you cry alone?

With thanks to Nikki Samuel for allowing me to share
I saw the this post on Facebook today by a friend, Nikki Samuel. I asked if I could share it here because it inspired this blog post.

The last few months have felt a bit like this for me. It's not lke me to get down for long, but yep, I got down. And I hate myself for feeling like that. One part of me was helping with the End TN campaign, trying to give others support, and smiling.

Yes, smiling.

But behind that smile it was a completely different story. It wasn't something I could just shake off. Ian could see it and worried and did everything in his power to help me. Some days I felt like I was crying.....but only on the inside. I was still normal on the outside.

The pain, I have lived with for most of my life now, so it wasn't that. I'm used to the pain. I'm used to living my life around the pain. But there were other symptoms this year like vertigo and the numbness on my feet and legs which obviously concerned me. There was a big worry to do with benefits this year too - that has definitely played a part in my mood. As well as that, my father-in-law has had two mini strokes recently. My own Dad doesn't keep the best of health. And of course, regular readers of my blog will know about me having lost my niece last year.

Who knows why we go on a downward spiral sometimes. Thankfully, I didn't reach the bottom (not even very far down), but it is certainly easier to go down than it is to climb back up. I am climbing up though.

But seeing Nikki's post this morning really made me think.....none of us ever know what is behind a person's smile. There could be pain, emotional issues, family worries.

Some people may wear their heart on their sleeve. Other people keep theirs well hidden under thick layers.

Neither way is wrong.....but sometimes we should remember that a person's smile could be hiding a whole lot more than we will ever realise.