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.
