A bad day & a long useless rant
Saturday, July 03, 2004
With the insomnia I've been having this last week it has given me a chance to think about who I am & what people close to me think of me since these attacks. I make the ones around unhappy, plain and simple. I doubt its because they can't stand to see me in pain. In a lot of cases it was easier for them to add to the situation with 'out of site out of mind' idea or my personal favourite 'Get mad a the person with the disorder and not the disorder itself'.Oh ya,I really loved to be shrugged off, called lazy, yelled at, put down, made to feel like a drug addict(because of the meds people) and being told its all in my head. Worst part is that before the attacks I was working, making connections in my particular field and quite honestly life was going upwards. Then BANG! Game over.
The good part of all this is it has DEFINITELY given me a deep insight into who I want it my life and to disregard the ones that bring down the sense of oneself. In some case it still happens. Maybe this is why I make people so unhappy. Maybe it's because I have a short fuse when I'm sore. I don't mean to be grumpy. I would just like to be left alone to let me deal with it myself. There is nothing anyone can do. Maybe have my nerves cut so I can't feel anymore. That might be worth it to be numb to everything but not feel pain. Where do I sign up? Or better yet some secret military cyborb program. Ahh who am I kidding. This Canada. Our government can't afford even give the troops the proper uniforms let a lone mesh metal to flesh.;)
I could just say I'm a 10 onThe Kip Scale(All clusterheads should have a copy printed & pinned on the wall. It was made by Mr. Bob Kipple) but that would make people around me inclined to read it! And worst part, understand the different pain levels. Hell, I don't understand it, the intense pain, not the chart. I want it to leave or find a way to make the pain manageable 80% of the time. I don't think that too much to ask.
Here's a good rule I like to follow. If the pain doesn't keep you from falling asleep or wakes you from your slumber the shut the f^&k up! Most disorders/injuries etc that cause pain will allow you to sleep. Maybe not comfortable but it beats pacing & wanting pound your head through the wall. No one should have to suffer any pain. I wish people could understand that there is torturous pain without visible wounds. I'm not saying anyone's pain is 'worse or better', whatever that means. I wish everyone could be pain free and enjoy life with no disabilities, no pain or suffering. Dam idealism:)!
(Do not actually do this. It's just a ranters way of explaining how I feel)
Here's good test that will help you understand what it is like for me. First get someone you trust that can stay awake longer than you(that's important). Now find an ice pick & put it in the fire. Leave it there till from dawn till after you asleep the next. After you're asleep get your close friend(they won't be that way after this;) to take it out of the fire. Careful now, you don't want the wrong person to get hurt by it. Then get them to thrust the white-hot ice pick into your eye. All the way right to the back of it. That should give you a hell of a jolt out of bed. But hold on there's more. Leave it in for an hour or so. Now repeat the afore mentioned explanation 5+(there is no magic number for clusters but you'll definitely have more than one) times during a 24 hour period, for several days to several months. In Chronic ClusterHeadaches we typically get about a fortnight off a year. What if no one could see the wound? If there's nothing to see then there's no pain right? So then no one will believe you. Not before months and months, sometimes years of testing. Maybe something will be done before that. Assistance with meds is not likely. You'll be screaming, crying, begging for death and while going on your well travelled route the the emergency. Next you have to cut out everything. Caffeine, smoking, drinking etc .. All the fun stuff:). You life is about to become super bland! Rebound headaches seem to be the worry of the times. Medication caused headaches are NOTHING in comparison.Rebounds headachesin my experience tend to be the whole head not one-sided. Headaches suck regardless of type.
That's about the level of pain this Clusterhead has felt. Your mileage may vary.
I hope it never gets bad enough for any of you be forced awake by this demon.
Love to everyone!
Paul
You can turn painful situations around through laughter. If you can find humor in anything, even poverty, you can survive it. -Bill Crosby
1 comments
The good part of all this is it has DEFINITELY given me a deep insight into who I want it my life and to disregard the ones that bring down the sense of oneself. In some case it still happens. Maybe this is why I make people so unhappy. Maybe it's because I have a short fuse when I'm sore. I don't mean to be grumpy. I would just like to be left alone to let me deal with it myself. There is nothing anyone can do. Maybe have my nerves cut so I can't feel anymore. That might be worth it to be numb to everything but not feel pain. Where do I sign up? Or better yet some secret military cyborb program. Ahh who am I kidding. This Canada. Our government can't afford even give the troops the proper uniforms let a lone mesh metal to flesh.;)
I could just say I'm a 10 onThe Kip Scale(All clusterheads should have a copy printed & pinned on the wall. It was made by Mr. Bob Kipple) but that would make people around me inclined to read it! And worst part, understand the different pain levels. Hell, I don't understand it, the intense pain, not the chart. I want it to leave or find a way to make the pain manageable 80% of the time. I don't think that too much to ask.
Here's a good rule I like to follow. If the pain doesn't keep you from falling asleep or wakes you from your slumber the shut the f^&k up! Most disorders/injuries etc that cause pain will allow you to sleep. Maybe not comfortable but it beats pacing & wanting pound your head through the wall. No one should have to suffer any pain. I wish people could understand that there is torturous pain without visible wounds. I'm not saying anyone's pain is 'worse or better', whatever that means. I wish everyone could be pain free and enjoy life with no disabilities, no pain or suffering. Dam idealism:)!
(Do not actually do this. It's just a ranters way of explaining how I feel)
Here's good test that will help you understand what it is like for me. First get someone you trust that can stay awake longer than you(that's important). Now find an ice pick & put it in the fire. Leave it there till from dawn till after you asleep the next. After you're asleep get your close friend(they won't be that way after this;) to take it out of the fire. Careful now, you don't want the wrong person to get hurt by it. Then get them to thrust the white-hot ice pick into your eye. All the way right to the back of it. That should give you a hell of a jolt out of bed. But hold on there's more. Leave it in for an hour or so. Now repeat the afore mentioned explanation 5+(there is no magic number for clusters but you'll definitely have more than one) times during a 24 hour period, for several days to several months. In Chronic ClusterHeadaches we typically get about a fortnight off a year. What if no one could see the wound? If there's nothing to see then there's no pain right? So then no one will believe you. Not before months and months, sometimes years of testing. Maybe something will be done before that. Assistance with meds is not likely. You'll be screaming, crying, begging for death and while going on your well travelled route the the emergency. Next you have to cut out everything. Caffeine, smoking, drinking etc .. All the fun stuff:). You life is about to become super bland! Rebound headaches seem to be the worry of the times. Medication caused headaches are NOTHING in comparison.Rebounds headachesin my experience tend to be the whole head not one-sided. Headaches suck regardless of type.
That's about the level of pain this Clusterhead has felt. Your mileage may vary.
I hope it never gets bad enough for any of you be forced awake by this demon.
Love to everyone!
Paul
You can turn painful situations around through laughter. If you can find humor in anything, even poverty, you can survive it. -Bill Crosby
1 comments
1 Comments:
This comment has been removed by a blog administrator.
By 
, at
5 July 2004 at 01:00
Medical terminology can cause confusion at the best of times. If there is a word you do not understand all you have to do is double-click on it and the definition will appear! Don't forget to drop me a line by email at versilleus@gmail.com with your comments, questions‚ recommended resources‚ concerns‚ & especially your experiences with clusters. Or come find me on my Facebook Profile to add me as a Friend. Whether you are a supporter‚ care-giver or sufferer. I would love to hear from you!
*Please do not use this information for self diagnoses. Writing about my experiences with chronic cluster headaches & epilepsy is a good outlet for me. Consult your Dr. with any kind of headache or chronic pain you may have. The 3rd party links on my site I have found to be a good resource to me over the past few years & dearly hope they will benefit you as well.*
