It Shows What a Little Persistence Can Do!

I've uploaded the Trigeminal Neuralgia awareness video onto a CNN iReport. As a result CNN contacted me and asked if I would upload my personal story. I was given 2 days to achieve this, but it isn't a story I was likely to forget! I just wanted it to be worded 'perfectly'. Never mind, it's a Virgo trait that I really don't like!

So by the following night I was ready to upload my story. After doing so I tentatively shared the link, thinking people might not think much of my work, my story, my feelings. It certainly leaves a person feeling vulnerable when they open themselves up. Writing my story was very cathartic. Uploading it and sharing it was very empowering and I was thrilled when it inspired others to do the same. People with rare chronic health conditions have been quiet for a long time. Suddenly we were seeing people giving a voice to their stories and it was amazing. I have no idea how many of the personal stories CNN intend to use. I know that mine and one other was verified very quickly, but others are still waiting to find out. CNN certainly intend to run a TN story closer to our First International Awareness Day, but as yet, I don't know what that will entail. 

One of the next things that started to happen was people sending requests to different tourist attractions, buildings or structures to see if they can light up in teal/blue on the awareness day. Of course I desperately wanted to rise to the challenge. From the 'comfort' of my own bed, dosed up on morphine, I decided to send a very honest e-mail to as many places as I could find. Gradually, one by one the replies started coming in. Each of them said no, for valid reasons, but they were all very disappointing. Then, I finally got a reply from the Lord Mayors Office in London saying they would agree to light up Trafalgar Square on the 7th October!

Toni was having great success, The Illumination Board for Niagara Falls have agreed to light up the Canadian side of the Falls. The Peace Bridge in Canada, the BC Stadium in Vancouver, the Zakim Bridge in Boston, The Mid Hudson Bridge in New York, The Ohio Terminal Towers USA, The Oamaru Opera House in New Zealand and The Miami Tower USA - SO FAR! Between us we've sent many, many requests. The most recent approval has come from the Gateshead Millennium Bridge, UK!

I am thrilled with how much we're achieving. It is really important that people remember we're a group of people who suffer with an awful, debilitating condition. I am proud of what I've achieved while laying in bed on my cocktail of medications. I'm now contacting the media as I really want the press to tell people why the fountains at Trafalgar Square have turned teal/blue. I've also contacted the national press, local news stations and national TV programmes. I really hope someone, somewhere, takes up our story.

In the meantime I have to keep pushing on. I'm exhausted and using so much of my energy on this. I know I'm hit a slump on October 8th but I'll deal with that then and I'll try and enjoy not feeling under pressure to make contact with people.

So many people have a new profile picture to wear on Facebook. They are sending it to their family and friends to wear for the day, to show support. I will send mine to a few people but I really don't think many will bother to wear it. I need to prepare myself for feeling that. In the meantime the change in the weather is making my face really painful and very uncomfortable. I don't know how to cope with it unless I try and make myself sleep for a few hours here and there. I'm tired of the pain and wish we were raising awareness of something 'nice'.

I have shared the link to my CNN iReport: http://ireport.cnn.com/docs/DOC-1029912

                                                         Image by Nikki Samuel

Busy, Resourceful, Hopeful, Sad - All In One Week.

It is surprising, that for someone with no 'life' that I've had a really busy week. I've been very resourceful and I think someone is finally hearing me. I've felt hopeful about the future treatment of TN. I've been so sad and upset with an appointment and by now, Friday, I'm emotionally 'done'.

The week started with lots of e-mails. I've been trying, as we get closer, to raise awareness of our awareness day! Hoping that the things that are starting to happen and the plans we're making are going to help me get someone to listen. I uploaded my TN video onto CNN and very quickly had a lot of comments and responses. To my surprise one of those came from a Producer at CNN. She said she'd watched the video and was very complimentary about the work I'd done. What she wanted was to know if I had breached any copyright issues with the music and images on the video and if I could tell them where I managed to get my informational quotes from. Thankfully, I only ever use images that are free to use and I had direct permission from Chris Conway to use his music. As I wrote the letter to the WHO I knew I'd only have used correct information and my sources were reliable. As well as this information they wanted me to write my story and upload it as another iReport on CNN. I spent most of Saturday working on all this information as the Producer asked if it was possible for me to have finished it by Monday 2nd September.

When Monday arrived the day started with me taking Harry to school. I haven't left the house in several months so I was anxious about it. Thankfully I didn't have to drive, Pete did that part for me! Unfortunately, even though I wore my scarf, the wind managed to catch my face and BAM! I was in pain. However I sent our several e-mails in attempts to try and get even one building, monument, tourist attraction or bridge in London to light up in teal/blue for the awareness day. It wasn't too long before I realised how difficult this was going to be. Just finding the person/department to contact was proving to be a difficult task. But I persevered and did manage to find a few contacts.

Tuesday arrived and despite being very 'hung over' from several doses of morphine the day/night before I was motivated to try and contact a few more companies, media, or buildings to ask for help. The rest of the day was a disaster and I had to rest. I'm so grateful to my Mum for taking care of Harry while I was sleeping. Sarah was at her Parents for a few days. I also received a phone call from Michael Pasternak from the Facial Pain Research Foundation. What an amazing, inspirational, supportive man. I feel proud and privileged that he took 90 minutes out of his day to call me!

On Wednesday I woke up with a determined motivation. I was getting tired of responses that said they couldn't or wouldn't be able to help. I also had my story approved by CNN and they told me they were definitely doing a TN story. They also asked if I knew a few more people who would be happy to upload their personal TN story. Those people came to mind immediately and after a couple of quick phone calls that was sorted. But my frustration with everyone I had contacted in London continued. After thinking of who else I could contact, I believed I had the perfect idea. Instead of trying all the different individuals, companies, tourist attractions etc I decided to contact the Lord Mayor of London (Boris Johnson). Assuming he manages to get to my e-mail in time I hope he can help. After several more e-mails and contact forms I had to call it a day. So far I'd done a lot in 3 days from my bed, dosed up on medication. I was pleased with how much I'd done and although the CNN story is positive, I haven't actually achieved anything else...YET! Sarah also came home today...YaY!

Thursday came and I had my last follow up appointment with my Neurosurgeon. I had expected and prepared myself to go in there and be told there was nothing more he could do and that unfortunately the MVD had been unsuccessful. I never learn. I always try and prepare for what an appointment will bring, but I'm usually wrong. On Thursday I was very wrong. I don't want to elaborate, there seems little point. But what I now know is that I have a lot more knowledge of facial pain disorders than the person who opened up my head and drilled into my brain. Hindsight is a wonderful thing.

It's Friday today and I've had very little sleep. I'm very emotional and tearful after my appointment yesterday and I'm going to plod along until lunch time, when I can take my next dose of medications and then, maybe, I'll manage to sleep.

A roller coaster week which I'm pleased is almost over. Harry is struggling to adjust to being back at school so we've found it difficult getting him there every morning. He'll also be very pleased it's Friday. I welcome the weekend and the chance to rest my head. I've found this week, that I've been able to speak honestly and candidly to everyone who I've come into contact with. It has to be the best approach. If honesty doesn't get you anywhere, nothing else will. Anything achieved by telling an untruth or exaggerating the truth will never be something that makes you happy or proud.

                                                  Image by Nikki Samuel

TN Video

This is my first attempt at making a video. Hopefully it will help raise awareness of TN and the need for an awareness day and a lot more knowledge, funding for research and information for health care providers and the public. I hope that in some way my video will help us raise awareness of a condition that devastates lives.

A Little Advice and Advertising!

Several years ago I met an amazing musician who had been called upon at the last minute to save a group of amateur dramatics from missing their opening night. His talent was something you could hardly miss, he was far too good to be there, but out of generosity he did the week long performance and helped the drama society out.

As years passed I forgot about him, until seeing his name on a friends Facebook page. For the life of me I couldn't place him so I had to message him and ask how I knew him. We finally worked it out and it was only then that I remembered how talented he was. He sent me a link to his website which had a full list of all the CDs he'd made or featured on. Imagine my surprise when I realised that I owned several of his albums and they were ones I listened to quite regularly for relaxation, meditation or some crystal therapy.

Since then I've bought more of his CDs. Not because I want to do him a favour and boost his sales, I don't believe he'd appreciate that being anyone's reason to want to own his work. But there is the luxury, on his site, to have a listen to each CD before you purchase them. In recent years I've bought some excellent music, which is why I want to share the link to his website.

Anyone who finds relaxation to be beneficial would really benefit from a quick look and listen. I can assure you,that Chris Conway either already is, or will be, a part of your CD collection and his music will certainly become a tool to help you relax and find peaceful sleep.

I will resist sharing my personal favourites, because nobody is drawn to exactly the same piece of music. In the same way that I don't find the sound of water relaxing, someone might find my choice to be anything other than therapeutic.

Please find a few minutes to have a look and a listen.

http://www.chrisconway.org/index.html

Trigeminal Neuralgia - Public Service Announcement

This is a Public Service Announcement that has been made by the Facing Facial Pain
Research Foundation. It is something that we are circulating far and wide and sending
to television stations around the world. We are hoping that CNN will pick up the
story which will raise an enormous amount of awareness.

http://ireport.cnn.com/docs/DOC-1019024

This is the comment I made in the hopes that the film and the comments combined
might convince CNN to help. This would be televised internationally!

Trigeminal Neuralgia has truly destroyed my life as I knew it. I've lost almost all of my friends, I've lost my nursing career, my freedom, independence, my place in society and I've lost myself. After several different medications I'm now taking a large cocktail of meds that have a multitude of horrible side effects. If I'm lucky enough to sleep it is usually drug induced and it is the only time I'm not in pain. However the pain often wakes me or prevents me from sleeping. If anyone puts 'the suicide disease' into Google, TN is what they'll find. It is widely accepted to be the worst known pain in the medical field and yet, despite all of that, it is still so unknown. If the WHO were to add TN to their health topics list, the world would address this condition. Information would be widely available, more funding for research to find a cure or better medications and give us sufferers some hope. But without awareness and without informing people about this condition, nothing will ever change. People wait years for a diagnosis, have extensive unnecessary dental work done and visit several different specialists before having any idea what they are dealing with. At that point it is often a long process before finding medications that someone can tolerate and after several years and the pain ever increasing, there are surgical procedures available. These are inadequate and can only offer, at best, a period of time with less pain. Many times, surgery causes further problems and an increase in pain.

Please, please help us to get this condition known. The pain is like nothing I've ever dealt with. Not a day goes by that I don't wonder how I will carry on with this 24/7 torture. How can 'the worst know pain, 'the suicide disease', be something even doctors have never heard of?? That's how serious this situation is. It isn't just our friends and family who have never heard of this, neither have many health care professionals. Without the help of other sufferers, the media, social networking sites and WHO this situation will never change. We desperately need to be given some hope for the future. CNN have the opportunity to make people aware of the agony of this condition.

                                                           Image by Nikki Samuel