Posted by Graham (195.92.194.17) on April 07, 2000 at 20:58:55:
Drummer, although you might not agree with this post, you have certainly stirred up something in me in your last post which I have been waiting to let out for a while. I suffer like you, and everyone else. I'm constantly waiting for the next attack, and in general they are usually very bloody painful. I stand every day in front of 90-120 teenagers trying to teach them Physics, because I am a teacher. But when tears and snot are running down my nose and face, and I feel that someone is ramming an ice pick into my eye, temple, jaw, throat, nose and neck I occasionally begin to feel that there are more important things in life. But to tell you the truth there isn’t. I live and breath like everyone else and I deserve a decent standard of living; ALL I WANT TO DO IS HAVE A RELATIVELY NORMAL LIFE. I want to work, earn my money and do my bit for society. I want to laugh, cry, get drunk, have sex and watch football (not that American crap, proper English football!!!!). Yes, I do want to be cured but that isn’t going to happen in the immediate future. Therefore, everyday I log on to this website praying that someone has a miracle cure, vitamin, mineral or new medication that may reduce my suffering. This doesn’t seem to happen anymore.
I visit this web-site nearly everyday and I am becoming increasingly less motivated to return. If someone asks for help they get maybe one to four responses. If someone writes a poem, or posts a picture they get twelve to twenty four responses. Is this a support group, chat room or writing club. It warms my heart when new people arrive at this site and receive compassion and support. But after the initial welcome it seems that there is less and less support for people who really need it. I look back at the archives and see lots of advice (some good and bad) about combating CH’s, but nowadays this doesn’t seem to happen anymore. An example of this is the poster ‘Trouble’. If he/she doesn’t like the site then he/she can (pardon my French) FUCK OFF. Why dignify a person like this with shit loads of replies. If someone asks about a medication or acupuncture they get a small number of responses, if someone spells something wrong in a post, or has a controversial point of view they have ten or more responses. Instead why doesn’t everybody put their energy into writing posts that will help somebody, whether it be a new visitor in need of medical advice or someone who needs love and support in their time of need. I visit this site because . . . . . .
I WANT TO KNOW WHAT PEOPLE ARE TAKING TO COMBAT THEIR HEADACHES.
I WANT TO KNOW ABOUT WHAT DRUGS DO AND DO NOT WORK.
I WANT TO KNOW ABOUT THE SIDE EFFECTS OF THE DRUGS WE TAKE.
I WANT TO KNOW ABOUT ALTERNATIVE TREATMENTS.
I WANT TO KNOW ABOUT MAGIC MUSHROOMS AND THEIR SUPPOSED BENEFITIAL EFFECTS.
I WANT TO KNOW IF RAMMING A CHILLI PEPPER UP MY NOSE WILL REDUCE MY CLUSTER ATTACKS.
I WANT TO KNOW ABOUT WHAT FOODS WE CAN OR CANNOT EAT.
I WANT TO KNOW HOW WE CAN ALL SLEEP BETTER AT NIGHT.
I WANT TO KNOW ABOUT NEW DRUGS FOR OUR CONDITION.
I WANT TO KNOW HOW WE CAN ABORT THESE BLOODY HEADACHES ONCE WE ARE IN AN ATTACK.
I WANT TO KNOW WHAT THE CORRECT LEVEL OF SLEEP IS REQUIRED TO MINIMISE ATTACKS.
I WANT TO KNOW IF THE AMOUNT OF LIGHT WE RECEIVE IN A DAY EFFECTS OUR CONDITION.
I WANT TO KNOW WHAT YOU HAD FOR BREAKFAST AND HOW IT PREVENTED YOU FROM HAVING AN ATTACK A WEEK LAST TUESDAY!!!!
Is anyone getting my point!
I want to give more of my own advice to people but I feel a little unqualified since I have only taken one drug for this condition, and it is just about still working. I know that I can give lots of advice about living with cluster headaches, but in the sea of crap that is floating around this site at the moment I suspect that I would not be listened to.
Am I not getting the point of this web-site, am I being unreasonable or am I just being too human?
People (like me) need help, not bickering, or poems, or god, just advice! Poems, pictures and jokes are great, and should take up lots of space on this site-but let’s not forget purpose of it and the powerful effect it can/could have on peoples suffering.
Wishing everyone a good day, or night, Graham.