Tuesday, 26 January 2016

We Need A Cure -- Seriously.

It's over a week since my Stereotactic Radiosurgery and my Trigeminal Neuralgia pain is as bad as ever. The procedure was performed on my left side, which is my "bad" side, but my right side is gradually getting worse. I am keeping a pain diary. Looking back through the entries, I can see it all in black and white. My left side varies between 8-10 out of 10, and my right is between 5-8 out of 10. 

I am so disappointed, I hoped and hoped that my pain would be a little better by now. I had dreams of coming off some of the crappy tablets, lifting some of this terrible brain fog. I actually did have dreams, but I awoke to pain. It seems that hoping was pure folly. My doctors have said that it could take several weeks for the pain to ease, but come on, lets be realistic here. It's not going to be that easy. 

Why can't the medical community get up off their arses and find a cure? I do know that the http:Facial Pain Research Foundation are doing their level best to discover a cure for Trigeminal Neuralgia. It needs to become a worldwide issue and I believe that nothing will change unless a celebrity is afflicted with this monstrous condition. Now don't misunderstand, I wouldn't wish it on my worst enemy. It's up to the World Health Organisation to pull up their socks and help the millions of people suffering with Trigeminal Neuralgia. There are some people that don't make the statistic. As well as all the mis-diagnosis, our families and friends are living through it too. 

Watching us in pain, and in horrific pain on a daily basis must be devastating to out families and friends. They are completely powerless and yet my own family are so supportive. I understand that chronic pain is a difficult and sometimes impossible thing to empathise with. Our families are victims of this illness too. They watch us changing from worker bees and social butterflies. We become semi-reclusive and our moods are quite dark. 

So do I still dare to hope that my procedure will work? If I continue to and the pain remains it will be truly soul destroying. I have this monster two and a half years, and unlike many people my age I dread the year ahead.

Here is a link to the TNnME website, where there is a petition to get Trigeminal Neuralgia onto the World Health Organisation's "Health Topic List." It's a fantastic website and well worth a browse! 
TNnME - Petition to the WHO


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