Posted by Laurence on July 10, 1998 at 21:52:59:
In Reply to: Re: Let's all answer this one . ( tad long ) posted by Yazz on July 10, 1998 at 20:06:04:
Hi again Yazz,
While I thank you for the compliment, you might like to know that this is most definitely a two-way street.
I have gained so much from the information that everybody posts here, whatever the way they have chosen to put their message across. The style or words used is not the important thing. It is the ideas and relevant information that is being shared by all of us that counts for most.
From the time a few weeks ago when I first was lucky enough to find this web site, I have been learning more everyday about the nature of our illness. Again and again I have been able to read a message and say to myself, yes I get that effect, that drug does that to me too, I get the pain there and so on.
The more I learn about my illness, the less fear it will hold for me. While my knowledge of clusters is far from perfect - I still have to use guesswork as well as plain common sense to try and figure out what is going on in my head - my level of understanding has improved immeasurably thanks to this web site and to all of you.
Fear is I think something we all experience with clusters. There is one type of fear I suspect common to us all that might perhaps be thought of as the “torturer’s syndrome”. What I am referring to is the fear most of us probably experience between bouts of dreadful pain. The awful thing we have to face up to is that while the pain we may be suffering during any particular attack is appalling, what is almost as bad is the thought that we may have to go through the whole thing again in a few hours, days or weeks. Torturers use this fear of pain, as much as repeatedly inflicting pain itself, to wear down their victims over time.
As the pain quite literally wears us down, our ability to withstand subsequent attacks is thereby greatly reduced. Those who suffer most from a chronic condition must have incredible personal reserves and strength of character to withstand the continuous onslaught of this illness.
The fear that we are losing by having found this web site, and working together in the way that we do, is the fear which comes with ignorance. Not knowing what is happening to us makes our condition much harder to endure. We are all constantly allaying our worst fears by learning more. As children, fear of “the boogie man” may have kept us awake at night. We slept much more soundly when we learned that there was no boogie man. Knowledge can therefore truly help free all of us of at least some of our fear of clusters. Clusters may still hurt like hell, but knowing the beast is halfway to beating him.
Bye for now
Laurence