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
