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.