Posted by Don Pearson UK (195.92.67.37) on March 12, 2000 at 20:16:50:
I intended writing this posting under a pseudonym allowing only a few to recognise me from other postings.I then realised that, if people are to understand me and what I write, complete openness would be much more useful. The mental approach I need to take, for other reasons as well, may help you, as it does me, with cluster headache. I keep my focus on what is good and privileged in my life (luckily, everything but CH), recognise my vulnerable points and plan for them. CH increases our vulnerability and sucks us in. When I was chronic its effects crept up on me - nobody told me what to expect. This time around, I do know that I could be swept out to sea - and I love the dry land.
I AM optimistic and very positive - I laugh a great deal. I have come to terms with many of the elements of my own nature. Two years cluster free enabled me to beat my heroin addiction of twelve years, my own way, relying on myself but knowing I had the love and support of family and true friends. Doing that has given renewed me renewed idealism, confidence and strength to contend with the return of CH.
I can also have a very pessimistic, bleak self-destructive outlook that can throw me into a depression so deep and engulfing (almost welcomingly) that I am frightened even to think about it. I am vulnerable when I am very tired or very stressed. At such times I avoid dangerous areas of thought. After years of controlling my reaction to other people (conflict escalates), I now seldom get stressed by them. When I am worn out by headaches I avoid emotional disturbance. Fortunately for me, this suicidal depression is triggered by abstract rather than my own personal problems. Also luckily, for me CH depression is more that of neurasthenic numbness and lassitude.
These two sides of me long precede my cluster headache and I have only just realised how they are tied up with my most fundamental beliefs:
my anarchism, idealistic - belief in the essential goodness of people. I am able to look for and find that goodness, even in the most unexpected places. I believe in individual freedom and take responsibility for my own actions by application of my conscience. This faith is rooted in my "heart".
my atheism, rooted in my "head". No problem for me most of the time but when my faith in good is tested, leads to a nihilistic hopelessness, pointlessness and futility.
In the CH context, when I have the headaches themselves I just react as we do: many I can bear, some I can't. The ones I can't bear override all ideas of courage. Survival is now, not even a few minutes from now. There is no question of seeking help or support then - I am alone in a world whose only dimension is pain. It is when I sit afterwards or the next day, tired through pain and lack of sleep, feeling sorry for myself - I know I am very vulnerable. I consciously and quickly try to redirect myself towards other things - usually feeling more sorry for other people than I do for myself. It can be very difficult; I'm just an ordinary clusterhead like you.
So, to cope at all, I have to be positive and I have to exercise very strong control over myself. For me, there is no alternative. You may not share all or any of these ideas, but something keeps us all going and we try to share that with others. So many of us are desperate, not recognising in themselves the courage and strength they have already shown and fearing that they are weak. It is that inner quality which is the real support each of us stands upon.
Love to you all, you help me very much.