Posted by Elaine (24.88.1.116) on April 08, 2000 at 12:07:09:
In Reply to: Drummer-you have lit my fuse! posted by Graham on April 07, 2000 at 20:58:55:
Todd answered Your questions, Drummer answered you also but I would like to answer your whole post too. Please take this post as intended only to throw light on the way I look at things. I can tell my your response to Todd and Drummer and others you are not just trying to cause trouble but you are in need of things.
I suffer like you, and everyone else, I am not one to constantly wait on the next attack, I try to enjoy my time in between and contribute to others in pain. My attacks are general bloody painful also. I agree with you that we do deserve a decent standard of living; I also want a normal life.
I also log on to this site hoping for a cure, but I log on for other reasons to I want to help others, and my way happens to be laughter. You being a teacher you should know all teachers have different ways of teaching their students. Just because they teach different does not mean they are not effective in their teaching. The teacher, who is always serious, teaches just as good as the teacher who makes learning fun. The only problem is the kids like the fun teacher better. That is because that teacher made coming to school fun and interesting. You say that you log on to the website praying for a miracle cure that may reduce your suffering, that that does not happen any more. I have read almost every post that has ever been posted to this site I have yet to see a cure please point out where it happen before cause its not here or I have missed it.
I also visit this site everyday and I see things much different than you do. I become more motivated everyday. If someone asked for help you say you only see one or two post to that person. If you write that person you will find they have lots of email. I myself find its more personal and would rather email them should they leave a email address. I want to help them and let them know they are not alone. I am not interested in impressing you by posting to them. I do not help them for brownie points from you or anyone else. I help them and support them because I know what its like. I try to keep it private because sometimes its hard for people to post their fears on a board full of people. Plus not long ago I posted support to someone and someone twisted my words and attacked my post. Thank goodness the person I was supporting understood my post and thanked me! The reason the people who posted the poem or joke get the most responds is because it made us feel good and we posted back letting them know it helped. You asked is it a support group, chat room or writing club. It’s all three. All three of those things help! Most all-new comers receive passion and support unless they come in attacking. People get support but a lot of it you don’t see. We keep a lot of it private. We had fun with trouble. We use trouble to vent. Trouble asked for it ! I for one have no guilt feeling for that. I am not a mean person but I needed to vent and I am not one to say I am scared or in need of a shoulder on the board. I have a few choice friends I can say that to. It’s a private thing to me so I don’t post to often my fears or my tears, or when like my daughter once posted she wanted to scream I am glad she did! Not only did she received lots of reply’s to her post but lots of email. It helped her a lot. When I was sick, my home looked like a funeral home for all the flowers that came from ch.com from people who had never posted before. There are things you and others do not see. Look my friend and you will see them.
YOU SAID:
You visit this site because:
1. You want to know what people are taking to combat their headaches.
Sir if you go back and read the old post as you say you have maybe you will find it has already been discussed. If a new person ask about something we tell them where to find that information. Drummer and others post links all the time. I have seen post lately about ice and medication for shadows. Maybe you are not reading the post or you must have missed a day or to.
2. You want to know about what drugs do and do not work. Everyday someone post about a drug that has helped them and drugs that did not. There are drug links all over this site and in old post. Plus there has only been a couple of new drugs out and it has been discussed. It’s the same old same old nothing new has come about. You can’t post what has not happened.
3. You want to know about the side effects of the drugs we take. Again go to search you will find the answer.
4. You want to know about alternative treatments. Again read the post they are here. What’s the need to keep posting the same information over and over. If some one ask we tell them where to look.
5. You want to know about the magic mushrooms and their supposed beneficial effects there was about a week of post related to that again its here on the sited put it in search you will find it.
6. You want to know if ramming a chilli pepper up your nose will reduce your cluster attack! That has already been discussed too, again check search.
7. You want to know what food you can and can not eat. You will find that in post about triggers.
8. You want to know about new drugs about cluster believe me if one comes out it will be posted there just has not been but a couple.
9. You want to know about the correct level of sleep that is required to minimise attacks. Sleep is one of the main topic here it is talked about at least once a week!
10. You want to know about if light effects clusters that too has been discussed. Put it in search.
11. You want to know what we had for breakfast and how it prevented us from having an attack a week last Tuesday! Ok this one has not been talked about.
Maybe you should post this question.
I got your point and I hope you get mine.
You say you can give advice to how to live with clusters. You will never know who listens to any advice all you can do is post it or email it to people. If they take your advice it is up to that individual. This again is like teaching, you can teach 24 hours a day to 20 kids. You have 15 that want to learn and 5 that don’t. You can not teach some one that does not want to be taught. You can not give advice to someone who does not want it. You post and if you help one person than you have accomplished something. It beats not posting and never helping anyone.
I think you are looking at this web site wrong, the board is a support group and support is different for everyone. The rest of the site is full of information. People seem to think the message board is the only place to go here but there are hours and hours of information here all you have to do is ask, email someone and ask if you don’t want to post. It’s as easy as the click of a button. Look DJ has buttons all over this site and links every where.
You say people (like you) need help, not bickering, or poems, or God, just advice!.
If you need help I will help any way I can. All you have to do is ask. You say you do not need bickering I am afraid that was just what your post was doing with drummer bickering. Why is it that’s OK for you to do, but not others? You say you don’t want poems. Now there is lots of people who do want poems, and God. Maybe you don’t need these things but these things mean a lot to some on the board. Should we just cater to YOUR needs or should we cater to as many different needs as we can. I go back and read post that tell DJ and others how wonderful this site is, I know what a powerful effect it has on people. I have also read the negative post here and there is only a hand full of complaints. It seems it is always the same person who complains or someone who we have never met before, or someone that only comes to the site when they need help and once they get it they leave. The praise for the site out weights the bad by a long shot. Did you ever stop to think that the person who posted the bad post knew they would get a bad response, and that they are looking for attention, or they are venting and our responds is just what they need to get though what ever it is they are fighting. In a way we are giving them what they wanted and what they expected.
Now you made all these statements and you said what you want and I have tried to answer all your concerns for the site and give you what you wanted. Now I have a question for you. You stated that no body post to people who ask for help here on this site and you are concerned about that. If you are so concerned why didn’t you post to them?
I am not trying to be rude just giving you a look in from my point of view
I wish you a good day, or night,
Elaine