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!