Showing posts with label awareness. Show all posts
Showing posts with label awareness. Show all posts

Friday, September 27, 2013

An Explanation

I do worry that I am pushing TN down people's throats these days, but I think you'll have gathered that I am kind of passionate about getting awareness for this condition.

There will be an awareness day on the 7th of October.....first ever. After that, I will try to slow down a little bit with the TN posts. (That's not a promise though :) )

The trouble is, TN and other chronic pain are part of my life. Unfortunately, a big part.

Other people write in blogs and on facebook about what they've been doing, places they've been, what they've eaten for dinner, but my life kind of revolves around my pain. I'm not looking for sympathy here......just trying to explain.

I actually have a nice life, I am a happy person, and believe it or not, despite the pain, I consider myself to be pretty lucky.

But, I know how much TN is ignored by the medical profession. I know how difficult it is for people to get a proper diagnosis, and I know how difficult it is for people to get the correct meds to help. And I know that those correct meds don't really help all that well!

So, if you are still following my blog and facebook page, thank you! It means a lot.

Friday, September 20, 2013

A Spoonful of Sugar Helps the Medicine go down....

A couple of days ago I came across an article in the Daily Mail....a health expert has been doing studies and came to the conclusion that sugar is bad for us. Duh! Think we all know it's not the best thing for us, but, in moderation I'm sure it's ok.

But, why are health experts doing studies on things like this?
And, why are newspapers writing about them?

There are countless illnesses and conditions which are forgotten about.

Where are the health experts? Off discussing how bad a mars bar is for you?
Where are the Newspapers? The television and radio news?

There are no statistics about Trigeminal Neuralgia. And no cure.

Our stories are obviously not interesting enough for the media. Stories of children living with this constant pain, stories of people being imprisoned in there homes because of the pain, stories of people losing their jobs, their homes, their partners....their lives.

Why is it that the only people fighting for awareness are the sufferers and carers themselves?

I have written countless letters to newspapers, tv & radio, but get no reply. But after seeing that story about the dangers of sugar, I wrote a letter to the newspaper saying more or less what I said above. I did get a reply saying it was being passed on to the Editor. I don't think for a minute that it will make anyone publish a story about Trigeminal Neuralgia, but at least the letter was read...and who knows.

But if any of you come across stories like that, and you say, that's ridiculous.....they write about that, but don't bother with TN or other serious, but not talked about condition.....write to them. Tell them.

And if anyone is interested in the article about sugar....it's here
And, if you are interested in writing to the Daily Mail with a similar message, you'll find the email address here 
 
 

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.






Wednesday, June 26, 2013

Determination

Every so often something happens in life which pulls you up and gives you determination to keep doing what you have been trying to do. And it makes you try even harder.

A few months ago that happened to me when I met (online) the mother of a teenage boy who has been suffering from Atypical Trigeminal Neuralgia since he was about eight years old. I couldn't believe it. I had read that children can suffer, but when you get to know of one, it's a whole other story. Learning about that boy pushed me at that time. It made our awareness campaign even more important.

A similar thing happened just a couple of days ago, when we met a woman (again online) who thinks her daughter possibly has Trigeminal Neuralgia, or something similar. The bigger problem here is that her daughter has cerebal palsy and is unable to talk. Unable to tell where exactly the pain is. Unable to say just how bad it is. However, she has stopped laughing. She is no longer the happy girl she once was. She struggles to eat. It is too painful to even swallow.

The worst part in this story is that this poor woman was getting no help. It was as though doctors were not interested in helping. This girl had no voice to complain about the pain, and it was as if doctors were thinking that was ok.

THAT IS NOT OK.

This girl has as much right to be free from pain as any other person, whether they be a child or an adult.

The poor woman was at her wit's end trying to make people listen to her. But the people who are supposed to be there to help were ignoring her. It is so wrong.

I haven't been able to get that beautiful girl out of my head.

I can only hope that things improve. They have to.

I have seen a video of her laughing three years ago prior to the start of her facial pain. My wish is to see a new video of her laughing again.

Once again, this story makes our awareness campaign so important. And it is pushing me to try harder.  I am determined that our campaign will do something positive for people with TN.

People may get sick of me asking them to share our posters, watch our videos and read our blog, but I will keep asking.

The only way forward is by awareness.

End TN put out a new blog post today. Please, when you get time, take a look, follow it and share it. Please click here to read End TN's blog.


And if you haven't seen our awareness page on Facebook, click here.



Friday, June 14, 2013

It's All About Awareness

I wish I didn't have pain.

I wish I wasn't so tired.

I wish I didn't have to take so many meds every day.

Ohhh......I could make lots of wishes. But there really is no point.

You have to make the best with what you've got. And I do try to do that. Most of the time anyway.

But there are "those days" when I do feel a wee bit sorry for myself. But I'm sure everyone gets those. Thankfully, they don't last for long and I can get back to normal again.  I hear people say that they wished they could feel normal.....but this is normal for me, with all the pain, the tiredness and all the other bits and pieces. It's what I am used to. Of course, I wish I wasn't, but.......

Isn't it sad that for so many people, this is what "normal" is. So many people live with illnesses and conditions day in and day out with no chance of change. And so many people's conditions are invisible to others. Just like Trigeminal Neuralgia.

facebook.com/endTrigeminalNeuralgia
This week's post on our TN Awareness page on Facebook was about the fact that Trigeminal Neuralgia is invisible. However, on a positive note, there are a lot of awareness groups just now, so it may be invisible, but it is certainly not going to be silent any longer. We want everyone to know about TN.

Our own group now has this week started a TN blog. If you haven't already seen it, please take a look and let us know what you think. Here's the link http://endtn.blogspot.co.uk/

So there you go. You came to read my blog and get a link to another one as well.

A special two for one offer for today only!