I think it is fair to say, from a personal perspective, that the First International TN Awareness Day was a success. I was interviewed by the Health Reporter at the BBC and the piece was shown on the East Midlands Today news the next day. My story (plus the stories of 3 other sufferers who I know) was published on the CNN website and even made their front page news! Many other personal stories were published in local newspapers, other news items in the USA and all the places that did light up teal made the day quite spectacular! We certainly made people aware of TN, though have a lot of work to do to now include other Facial Pain Disorders. The awareness campaign needs to move forward, with serious attention to it being truly International, needing some explanation from the WHO about why ALL Neurological conditions are currently listed under Mental Health, including pain and creating more and more information to make available in hospitals and dental surgeries. I believe next year will be a bigger event, but I am ready to fight a slightly different fight.
Something that was really highlighted for me, during the last 12 months was the need for more research. At that stage I wasn't aware of the work of the Facial Pain Research Foundation. During the last year I have become very interested in their work and have a real passion and desire to help them move forward, even faster if possible, with their current research. Not only are they looking for a CURE for TN and other Facial Pain Disorders, they are also looking to identify a possible gene that predisposes someone to TN. If that can be achieved, they are looking for a treatment to prevent TN from occurring. It is possible, that in my lifetime a cure and prevention could be found and I want to help.
After discussing fundraising and donations with Michael Pasternak (one of the Founders of the Research Foundation) I have decided that I would like to put my energy into helping raise money for the research site here in the UK (London). I don't intend to abandon the awareness campaign, but in the last few months it became more and more apparent that I was putting ALL my energy into raising awareness and there are others waiting to jump into my shoes. There was so much to do and my energy and ability to function is generally short lived, so whenever I was upright and awake I was on the computer or my iPad busily sending e-mails to Doctors, Newspapers, famous landmarks, Government, TV stations and hospitals as well as creating posts for people to use and share on Facebook. That precious time was always the time I would spend with Harry and I was pushing myself so hard it became obvious that I was making my pain levels worse and for longer periods of time. I was neglecting my family and myself and I knew I couldn't continue at that pace. In my determination to raise funds and 'beg' for donations, I will ensure I only work on this during the day while Harry is at school. I will still need to rest when my face is just too painful to keep upright and when I just feel exhausted from the medication and pain and I know I will still need to remove myself from the room to rest my head back on the bed. But I am hoping that anything I do to raise funds won't take me away from Harry and Sarah and I need to make myself a promise that I'll stick to that. The only time I'll compromise on this is when I'm awake through the night because of the level of pain and need something to distract me.
I am already thinking about some initiatives that could raise money and have some ideas and suggestions to put to other people and companies. I need to be patient, discuss the logistics with the Facial Pain Research Foundation and identify the best way forward. I know a few people who are hoping and planning to help and I believe we will work well as a team. I'm excited about what might happen but will share more when things are set up!
