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's here
And, if you are interested in writing to the Daily Mail with a similar message, you'll find the email address here