Shared Experiences


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Posted by Laurence on July 07, 1998 at 15:48:51:

Last Saturday (4th July) I put a message on the board describing my personal experiences with the almost constant shadow effect.

As most of you probably detected from the words I was using, I was feeling a little tired and frustrated at the time. I had earlier in the evening had a good time out with my family enjoying a Chinese meal. It was only when I returned home, that I received an email reminding/warning me that Chinese food is a cluster trigger for many of us. (Apparently the food contains very high levels of mono-sodium glutamate, MSG for short). I can confirm that the food is almost certainly a trigger for me as a cluster started about 3 hours after the meal (in some the cluster may apparently occur many hours after a meal).

Now the purpose of this posting is not just to warn others about the possible “danger” of Chinese food for those who are suffering from our illness, it is to remark on what seems to be taking place right here on DJ’s web site.

Someone thousands of miles away had tried to help me. He had taken the trouble to send me some good advice. (I thanked and ribbed him later that he should learn to type faster!). As I was coming out of the cluster that night, I decided I needed to get something off my chest. I therefore described what a shadow was to me and said why I believe we are suffering from an illness not a headache.

To read the next day that my words had helped others brought me immense satisfaction. To realise that some good had come out of my pain is deeply moving to me. I believe the same emotion is being reflected in the messages of many of you. We seem to be experiencing something that we hadn’t expected when we first saw the beacon that DJ lit for us on the Internet.

We only came here in search of information, but we may now all be gaining a great deal more. Sharing our thoughts, our experiences (and yes even our jokes at times) may well be helping us as much as, maybe even more than our medications. We seem in a very real sense to be treating our illness every time we do something for each other.


Bye

Laurence



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