Disease

The past three weeks have been quite an emotional journey for me and so I decided to write about just that. This blog is about my experience associated with this disease, but also about me. Is it narcissistic to write about oneself? Not sure, personally I don't think so. I sometimes think that this disease has made me become, or should I say I allowed myself to become, more self absorbed. I worry about the "woe is me" mentality and also worry about the probability of the disease eventually defining who I am. My first question is this, How is this disease defined? is it a "terminal disease?" or is it a progressive degenerate disease with no known cure?" Will I die from this disease if not by accident and if so when and how long will it take? One might think that this could be a bit indulgent or perhaps too morbid, but how does one cope with day to day activities with the view of medium to long term plans. Sure I can be "in the moment" and enjoy the time that passes each day and even achieve some sense of self-fulfilment and happiness as I would without this disease. However, I surely can't just think about the day alone? surely part of my activity is to be part of creating a future and securing a tomorrow of sorts? This would be practical as well as responsible but, how does one do this without knowing the answers to my previous questions. Yes of course I must continue to contribute and be useful, but to what degree? Ok so here are some reactions I have heard from friends as well as strangers. I have been told that we are all going to die anyway so what's the difference? other than the fact that someone told me what will cause my death, most responded to say that they could be dead before me and so planning the future is something we do automatically no matter, no one can predict what will happen and when. I was also told that I moan too much? This was said to me because I work a full day of very physical work and at the end of the day I really battle with pains, so when was asked how my day was I had to say how I felt. I have also heard that I am a bit moody and not very social. Maybe I am just being too philosophical? but too my mind and considering that my life has changed quite drastically I would not be surprised if people saw me this way. I am not as social as I used to be, neither am I as jovial or spirited as I used to be. I do moan more than I ever have..."if one refers to it as moaning" all of these comments are quite true but not in context of what I am going through. I find myself very much alone, between groups of ignorant through to the hopefuls. I have been told that there will be a cure any day soon so I should not worry, I have been told that the disease is no longer a terminal disease and that with proper management patients have gone on to lead fairly normal healthy lives. I have been told many of the side effects I am going through are perhaps psychosomatic. So if I am unable to be 'hopeful' then I should try 'Ignorance' if I cant do this then it must be a psychological problem for which I can get help......everything at the end of it all is just a veil, not mine, but for anyone that is associated to me. It is easier to deal with daily topics and recognise behaviours in people that are more common and accepting than complicated issues which are full of questions and unknowns. I am a complex person, I do prefer to know 'more' rather than 'less'. I have had the same approach to things all my life and that is because it is what I know and understand, it is how "I" function. Any plans or challenges I am ever faced with are handled in exactly the same manner......I first gather as much information as I can, then I strategies and then put things to action, if the plan does not work I don't change the whole plan but simply parts of it. I will be happy with whatever outcome as long as I have done all of these things to the best of "my" ability. So? how can I plan anything if I don't have a clear idea of what I am dealing with? how can anyone move in any direction if there are simply no sign boards anywhere? I have lived my whole life, well as long as can remember, doing for others, it always gave me a great sense of purpose to serve and provide and to be available for others. Now that I am unable to do this I have found myself more alone than ever. The only way for me to participate in a normal social environment is to become what I am not....well again. I will never be well again.........I can deal with this but I feel it is too difficult for those around me to, and the only reason why I feel this to be true is because I don't have any obvious physical signs of my illness. In fact I still look very healthy and well. This is the paradox..........If the signs were obvious then there would be a natural common understanding and no need for complex mental arithmetic to figure out how to respond or behave. I can function like anyone else out there, I am actually very active but.......and here is a big BUT, I am not well, and this disease is getting the better of me, very slowly but still making it's presence felt. I am reminded of it everyday and I feel it everyday, every time I walk to my car and get inside and have to take a moment to catch my breath, every night I struggle to sleep and battle with pains, every morning when I cough and splutter like a fifty year old beetle starting up in cold weather. Once I get going I am ok for the day. So I have decided to not tell anyone any more about my disease, I have also decided to see a councillor and to somehow find a way to deal with the battle of the mind. I have also decided to do what is right for me and this part is going to be tough. It has taken me two years to find out that unless one has a significant other who will understand and help you through the process there is not going to be another who will champion for you and take up the cause. Perhaps it is just a natural way of separating the sick from those who can still contribute. A heard of buffalo only run a fast as the slowest of the heard when being chased by a predator...and this is because there is no need to do more than what is required. They don't panic, they stick together and they also know that the slowest of the heard will be sacrificed. This is completely natural and this action itself contributes to the herds survival. Perhaps all sickly people who do not have someone to care for them should be able to go to an island somewhere where we can all moan together ha ha. Hey I am joking......but I do need to stop worrying about what people think and just stay away or say nothing about it further. One thing is for sure though...I am not going to pretend to be well so that everyone else can become more comfortable with me .......they need to get over it I think.