A month ago I rectified this situation when I met a fellow sufferer and more importantly someone who has become my supporter and my friend. A wonderful woman I met through internet support groups where we bonded over our shared experiences and outlook on life.
Just this one human being who had felt my pain made me feel like I wasn't the only person in the world who lived this life, a half life of pain, medication and loss.
But that experiennce was surpassed this weekend when I sat, alongside my wife, this new friend of mine and her fiancé in a room with more than 150 fellow sufferers and their supporters. Accompanying us on this momentous day were a dozen Heath related professionals who are dedicating a large part of their careers to improving the physical and psychological well being of CH patients.
This is the first of four posts I am writing about this amazing day hosted by OUCH UK (https://ouchuk.org); There is too much to say in just one post and to be honest I need time to process all the information we were given!!!
One of the expert speakers on the day highlighted the prevalence of the group of illnesses including Cluster headache known as trigeminal autonomic cephalalgias.
0.2% of the population suffer from this, our unique version of hell. Therefore this gathering of more than 150 of us whose lives are directly affected by CH is so amazing and as sufferer strangely comforting.
There were one or two moments of quiet at the conference where I looked around the room at all of the people there, I had heard some people talk about decades of suffering, others just months, some suffer daily and others have periods of relief between the pain.
I have often thought about the differences between me and other sufferers. If I'm totally honest I, mainly on my bad days, i have had thought like 'but you have only been at this for a few months, I've been doing it for years!' and 'at least you get a break!'. I feel bad about these feelings I really do, but i think all CH sufferers will understand
But in that room full of understanding, compassion and camaraderie all I could see was the similarities between us... the pain, the frustrations, the medications and treatments, the deep holes left in our lives.
This event felt like a once in a lifetime experience, to have so many of us in one room at once, however i got the sense from those who attended, including medical professionals and the representatives from OUCH UK, that this will be happening again!!!
