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Title: How are you living with CH's?? Post by sldrswyfe on Apr 10th, 2007, 8:10am Hi Everyone...I hope you're all well. Listen, I am interested in hearing about how you live with this condition...what is is you do to make your life as easy as possible, as productive and enjoyable. I'd love any suggestions, ideas...I just want to hear how you're all making it. Thanks so much. Sherri |
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Title: Re: How are you living with CH's?? Post by artonio7 on Apr 10th, 2007, 8:17am The times between the hits are the best times a great time to play catch-up. The hits make me appreciate pain free times all the more... and a few hours of uninterrupted sleep is like heaven. Being awakened by something other than pain is better than sex. I thank God that I'm a Clusterhead... it has taught me much about life. with warm regards, Tony |
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Title: Re: How are you living with CH's?? Post by Gator on Apr 10th, 2007, 8:33am What this site and the people who come here daily have taught me is this: Surviving with any quality of life is mostly a mental game. It's all about your attitude. You'll only be a victim if you let yourself be one. Take it one day (sometimes one hour or even one minute) at a time. The attacks, no matter how bad, will end. Take advantage of and enjoy the pain free time and never let the bastard keep you from who and what is most important to you. If the shit gets too deep, slide on into ch.com and someone will throw you a life preserver until you can tread water on your own again. When you are in between attacks, be there for someone else who is having a rough time. Share what you have learned with others. Hope that helps, Mike |
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Title: Re: How are you living with CH's?? Post by thomas on Apr 10th, 2007, 8:42am on 04/10/07 at 08:33:12, Gator wrote:
Words to live by, there. [smiley=thumbsup.gif] |
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Title: Re: How are you living with CH's?? Post by BarbaraD on Apr 10th, 2007, 8:58am Attitude is everything. You can have CH or it can have YOU. Make the most of your PF time and endure the CH time. It will end eventually. As Gator said, there's always someone here at CH.com to give you support and a boost when you need one during the bad times. I don't think any of realize how really strong we are until we live with CH for a while. But anyone who goes thru CH for a few years could whip superman without batting an eye..... Hugs BD |
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Title: Re: How are you living with CH's?? Post by Paul98 on Apr 10th, 2007, 9:15am When not in cycle I don't give the attacks a second thought. When in cycle I deal with each attack and then move on. Again I don't dwell on it. I always am on the lookout for opportunities to educate folks. Be it people with CH, doctors or just people. I will help other CHers if I can. I guess what I'm trying to say is CH becomes a way of life and a part of what you are. The sooner you learn to accept this the easier it is to live with. -P. |
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Title: Re: How are you living with CH's?? Post by Brewcrew on Apr 10th, 2007, 9:31am When in high cycle, I go from one minute to the next. And I take whatever measures I have available to me to stop it in its tracks. Otherwise, I just deal with it. I'm way past the "why me?" stage. I didn't ask for this. I don't deserve this. And I certainly don't get any kicks out of it. But I have it. There's lots of others who have it far worse than I. Their conditions may kill them someday. Mine won't. One minute to the next. |
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Title: Re: How are you living with CH's?? Post by UN solved on Apr 10th, 2007, 9:57am Words of wisdom above ;) Live with it ... don't die with it ! UNsolved |
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Title: Re: How are you living with CH's?? Post by Guiseppi on Apr 10th, 2007, 10:33am Someone on the board said "life is lived between the hits." Struck a chord with me. Otherwise I think Gator summed it up. It doesn't define me or rule me, but there is never any question the bastard is there! So looking forward to meeting you at the convention! Guiseppi |
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Title: Re: How are you living with CH's?? Post by thomas on Apr 10th, 2007, 10:41am Something I wrote a couple of years ago, pretty much my perspective on it. At night, it comes to me. Possessing me, consuming me, ripping away my sanity, and everything that is good in the world fades to black. I’m alone with my tormentor. There is no help. I must face it night after night………. Alone. No one understands the depths of my agony. As I pace the floor in my own personal hell, I would do anything to make it stop. I beg for mercy… but to no avail, it doesn’t listen. The pain is more than I can stand. It’s all that exists for me. My world is crumbling away from me, and I don’t even have the strength to hold the pieces together. I wonder what I’ve done to deserve this. No one should have to endure this torture. It’s just not fair. It rips away my very sense of self, and leaves me a withered, wasted husk of humanity. At times, I consider letting it win, giving up the fight, because I’ve lost the strength to carry on. When will this be over? And when it’s finally over, how will I ever be able to face it again? The fear of its imminent return leaves me grasping for sanity. Finally it’s over. I’m exhausted, worthless, and unable to even pick myself up off the floor. I rest and gather my strength for the coming day. As I feel the dawning sunlight on my face, and bask in it’s warmth, I think to myself “It was worth it”. When the girl at the store, where I buy my coffee, gives me a bright smile, I think, “It was worth it”. A hug from a loved one, a laugh with a co-worker, a joke shared with a friend, a distant relative’s voice on the phone, answering a young child’s question about life. All of these things make the battle worth fighting. You see it’s not the pain that is important. It’s the times when the pain it gone, that are important. That’s why I cherish every minute I have away from the beast, because it’s those times spent with friends and loved ones that give me the strength to continue my struggle. |
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Title: Re: How are you living with CH's?? Post by JeffB on Apr 10th, 2007, 10:42am It's not about how you drop to the floor in absolute pain, it's how you get back up and continue on. ;) |
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Title: Re: How are you living with CH's?? Post by George_J on Apr 10th, 2007, 11:17am One cycle at a time, one day at a time, one hit at a time. Learning to control your reactions to a hit is more valuable than any medication. Fear and panic makes it worse. Learning to face it without fear, to understand that it goes so far and no farther, to remember--enables you to endure each individual hit. It's the difference between a victim, and a warrior. Endurance isn't easily learned, but it's worth it. The rest of life outside CH is just--life. All the sweeter for the terrible nights. Best, George |
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Title: Re: How are you living with CH's?? Post by Kevin_M on Apr 10th, 2007, 11:47am Good replies. Your's too Jeff, true. ;) |
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Title: Re: How are you living with CH's?? Post by The mad viking on Apr 10th, 2007, 12:14pm on 04/10/07 at 08:33:12, Gator wrote:
Very well said Mike Svenn |
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Title: Re: How are you living with CH's?? Post by E-Double on Apr 10th, 2007, 12:22pm Suck it up and don't ask for vibes if I have a hangnail. It's a part of life!!! Like anyone else there are good times and bad times. Period. End of sentence ;) |
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Title: Re: How are you living with CH's?? Post by fubar on Apr 10th, 2007, 12:27pm Friedrich Nietzsche said it best... "He who has a why to live for can bear almost any how." |
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Title: Re: How are you living with CH's?? Post by seasonalboomer on Apr 10th, 2007, 12:49pm on 04/10/07 at 12:27:57, fubar wrote:
and Nietzsche actually suffered from debilitating headaches as well. It's true. |
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Title: Re: How are you living with CH's?? Post by Yorky on Apr 10th, 2007, 12:51pm on 04/10/07 at 08:10:01, sldrswyfe wrote:
blastfeemer in england means "troll" jehova (is english for "snake skin oils " ;;D http://www.youtube.com/watch?v=vOdARZ3bs0k |
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Title: Re: How are you living with CH's?? Post by sldrswyfe on Apr 10th, 2007, 1:04pm You are all absolutely AMAZING!!! Every single post is inspirational...and I love every one of you for sharing your thoughts and perspectives...I cant comment or commend you all enough. If this is anything like a convention is like...MORE OF THIS...keep them coming everyone...Im printing them out...and putting in a notebook to look through...to help keep me going, to keep it in perspective...and keep hoping...You are all incredible, strong and unbelievable people. I am saluting all of you...job well done. Sherri |
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Title: Re: How are you living with CH's?? Post by Mosaicwench on Apr 10th, 2007, 4:18pm As a supporter our lives are changed by hits . . . our days are marked by hits . . . our hours are consumed by hits . . . our memories are branded by hits . . . our future is worried about hits . . . our loved ones are changed by hits . . . . all with pain in our souls and tears in our eyes and pleas for mercy. A different kind of pain for us, but pain nonetheless. |
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Title: Re: How are you living with CH's?? Post by seasonalboomer on Apr 10th, 2007, 4:38pm on 04/10/07 at 16:18:42, Mosaicwench wrote:
other than that, doing pretty good though...... :-/ |
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Title: Re: How are you living with CH's?? Post by artonio7 on Apr 10th, 2007, 5:38pm on 04/10/07 at 16:18:42, Mosaicwench wrote:
all that and shopping too... sheesh. with warm regards, Tony |
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Title: Re: How are you living with CH's?? Post by sldrswyfe on Apr 10th, 2007, 6:05pm that was funny Tony...that must be hell ;) |
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Title: Re: How are you living with CH's?? Post by TonyG1 on Apr 10th, 2007, 6:08pm Not much I can add to what everyone else has said here... all very true ! When i was newer to CH, I used to worry about the next hit, causing anxiety, causing sleep deprivation, etc... etc... ; however, as others have said you either take it one hit at a time and don't worry about the 'next one' OR you let it rule your life... I choose door #1 --- much less stressful that way. Takes a while to get there -- I can honestly say this past cycle was the first where I went to bed at night without giving the hits a second thought... I thought if it hits, it hits... meanwhile back at the ranch I was getting what sleep I could when I could ... |
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Title: Re: How are you living with CH's?? Post by Maffumatt on Apr 10th, 2007, 6:26pm you deal with the hits when they come, go on with your life when they are over. |
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Title: Re: How are you living with CH's?? Post by ClusterChuck on Apr 10th, 2007, 6:40pm One hit at a time ... Just deal with the hit, and then FULLY enjoy and cherish the PF time! REMEMBER, you are a person who happens to have clusters!!! You are NOT a cluster head sufferer, who happens to be a person!!! NEVER EVER let clusters rule your life! Chuck PS: and TRY to deal with the female fakers here ... after all, WDGCH ... PPS: WDGCH= Women Don't Get Cluster Headaches ;) NOTE: If you don't see me for a while, I am hiding ... DAMN touchy wimminz!!! ;;D |
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Title: Re: How are you living with CH's?? Post by Charlie on Apr 10th, 2007, 9:27pm You said you had good luck with the technique. I wish everybody did. That is what kept me from becoming homicidal. The times the beast caught me in a weak moment or it just didn't work, I beat the walls and screamed. Mine were 20 to 30 minute affairs when it didn't work. I would be hit 5-7 times a day for about 4-6 weeks twice a year. Anyway, that was coping I guess. I had a couple nurse friends that knew about them too. I got hit on a plane once. Not fun. You're doing fine Sherri. You found us and we found you. http://www.netsync.net/users/charlies/gifs/fluder.gif Mean Old Charlie |
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Title: Re: How are you living with CH's?? Post by ClusterChuck on Apr 10th, 2007, 9:58pm on 04/10/07 at 21:27:59, Charlie wrote:
I tried to hide from her ... But she found me ... DAMNIT!!! Chuck |
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Title: Re: How are you living with CH's?? Post by Yorky on Apr 10th, 2007, 10:23pm on 04/10/07 at 21:58:27, ClusterChuck wrote:
shes driving me nuts chuck (cant get that "sherry baby,song out off my head aaaaaaagggggghhhhhhhhhhh.........there it goes again ;) |
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Title: Re: How are you living with CH's?? Post by sailpappy on Apr 11th, 2007, 1:22am ;;D ;;D You ae never alone, after the hit log onto the clusterchat board and chat with thers that seem to have forgotten about that link, http://www.clusterheadaches.com/chat Or as you get to know people look for their chat sceennamesn for MSN, Yahoo and AOL, there is always someone that has had a abad hit an are more than willing to talk abut the pain or other aspectof this syndrome.I hae been sever Chronic since 1971 and have anywher from 7 to 15 hits a day, you go through this self pity stage, "why Me" "what did I do to deseve this! Will My wife and kids ever be able to gorgive me for the tiem I have robbed them out. the self pity party goes on ad on and on, then one day you reaslize that you have meet special people along the way that can and will help you get through this and once its over , well here you are. still sane, still here! best of all! I run cold water over the affected side of my head, as cold as I can stand then try to kep the pity stuff tomy myself as much as possible, then when I a can feel the goos bump starting its on the final leg of the assult, soon it will be all over, then I have to lay down and snugle with a towel until the chills stop. its over again until the next time and you have put he pity party away for Good , it only makes the people around you feel helpless and it counter productive anyhow. Fighure out what helps you the most and go for it, seems O2 helos about %98 of he people herem\, just not me. stay away from Narcotic pain meds as the only ,lead to addiction and do very littlle to help this alilmet at all, there are a lot of treatments out there, you just jave to ttry them see if any are going to help you. BP is impotant and you sould have that checked soon to Tell If this a porblem with you! Remember what works on your neighbor might not work on you, I am the biggest case of this going on the board. but dont give up, there is always hope!!! and Remember your nevr alone, I am Sailpappy in MSN, Sailpappy1 on AOL, Sail_Pappy on Yahoo messenger. Personally I always can make time to help a bother in trouble! Pappy l |
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Title: Re: How are you living with CH's?? Post by LadyElaine1 on Apr 11th, 2007, 1:48pm Gator said it the best. |
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