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Title: how do you handle the mental part? Post by rapunzel on Mar 21st, 2006, 10:36pm First off, I have to say that I am so happy that I found this website and all of you. I was thinking about this today, and when I experienced these cluster episodes a decade ago, I was so darn alone and scared and just being able to come here and post has made a world of difference. I am so grateful, so very sorry that there are more people in the world experiencing this pain, but so very happy that i do not have to explain the pain, and everything that goes with it. Having someone out there to talk to is such a wonderful thing. Now, to what I was asking- how do you handle the mental part of these clusters? I am getting wore out- mentally. Today, as I was going thru the first stages/levels of yet another episode I just wanted to give up. I could never- its not an option because Im a mommy- but mentally, it is purely exhausting. The bottom line is it frickin hurts so much, that as soon as the eyeball starts pounding, the panic and fear sets in in anticipation of what is coming. Then the pain part- why cant we be lucky enough to just pass out? I actually wondered that around Kip 7. maybe this is just my 'depressed' post, I don't know. |
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Title: Re: how do you handle the mental part? Post by burnt-toast on Mar 21st, 2006, 10:59pm The pain may seem to be unbelieveable at times but I'd take it if it didn't primarily occur during sleep or at rest. The physical and mental exhaustion of CH is probably what I fear the most. A lot of physical and emotional problems can result from the extended sleep deprivation. And it's never easy to function effectively on too little sleep - too often. The only advise I can offer is to stay focused on the things you enjoy - whatever they are. Even if you don't do them as well as you would like - keep doing the things that keep you going. People are also important, they may not fully understand but if help educate a few folks who care, they'll be good places to vent from time to time. The little positives add up to a better attitude and help keep your mind straight during periods of attacks. God Bless Tom |
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Title: Re: how do you handle the mental part? Post by Jasmyn on Mar 22nd, 2006, 8:22am Hang in there, keep on telling yourself this will eventually pass. I still don't have an answer to that question and it is not like I don't try and take advise. I have 3 kids myself and life has to carry on normally but in cycle I change. Sleep deprivation, like Tom said is a big factor, so is the constant battle, getting a hit when your kids are due for school and there is no one to take them but you, sore and tender from battling the whole of the previous night, again the lack of sleep. Not being there for your kids and husband, the guilt, the tiredness, the effects of the medication and then the battle with the pain when your cycle peaks and it's one hit after another, Kip 8 - 10's. I become more dysfunctional, more depressed, more mentally insane despite my best efforts to be a "better person" and to cope better. This site helps me cope with the mental agony, to talk to people that understand, to hear their stories, to laugh with them and cry with them. I've gone without meds before and without this site but I honestly tell you that my saving grace has been this site and these people. |
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Title: Re: how do you handle the mental part? Post by rapunzel on Mar 22nd, 2006, 8:40am yes it is definitely helpful. I was still reeling from a hit and washing the dinner dishes- and I was just so darn exhausted- listening to my husband complain that he cant do it all, he is not a maid..blahblahblahblah... then, fast forward another hour or two and I was once again battling the beast which had just become the point where you cant sit still and cant talk and my youngest child asked me if she could read her story to me. I felt like a terrible rotten mom when I told her, from behind the bathroom door "not now, Mom has a headache again". I have no choice but to hang in there, and yes- it is such a relief to have here to come to. I just hate the repetitive pain- and needed to whine, I guess. I feel better this morning, despite a bad night last night. |
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Title: Re: how do you handle the mental part? Post by NotH20 on Mar 22nd, 2006, 9:03am Rapunzel, Tom and Jazmyn seemed to have hit the nail on the head....While in cycle (which usually last for 4 months) I try to live life to its fullest when I'm not getting hit. I enjoy my family to the max. It makes me feel as if I'm making up for the times when I'm rocking and snorting the O2. I've had ch's for 26 years and I've come to terms with the beast....he may get me for the four months during the ch's, but he's not getting me for the FULL four months ;) This site really has helped me as well - my extended ch family is wonderful and understanding. Whenever you need a "pick-me-up" this family is here for you. Good luck to you.... Mia |
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Title: Re: how do you handle the mental part? Post by Sandy_C on Mar 22nd, 2006, 2:07pm The mental part - it's different in all of us. I'm fortunate in that both of my children are adults and living on their own, so it's just my hubby and me at home. When in cycle, I've learned not to focus on the next hit, because it's going to happen whether I want it to or not. I can't control that. But, what I do control is my life between those hits. I continue doing the things I want to do, while I'm always prepared with my weapons should a hit occur. I focus on what's good in my life, not focusing on the next hit. My husband was like yours, "I'm not the maid" attitude. He is no longer like that. I introduced him to this site, gave him carte blanche to read everything on these boards, including my posts, which sometimes were not all that nice concerning him. I even bookmarked this page on his precious computer. He read. He learned. He now understands and sympathises with what I go through during a hit. He is my best supporter, and no longer complains about being the maid when I'm in cycle. He just does what needs to be done without being asked. I do what needs to be done between hits. I don't just sit there and worry about the next one. As soon as one is over, I get my butt up off the couch and do what I've got to do. It was never this way before I started with CH. It was the typical she does the cooking, cleaning, shopping, child care, whatever, whatever. Now it's not. It's now a true 50/50 deal, whether in cycle, and even when not in cycle. But it took my affliction with CH to bring this home to him. Maybe if you can get your husband to just read on this site, he might get an idea of just what it is you are going through. Can't guarantee that it will change his mind, but it's worth a shot. If you are episodic, remind him, and yourself, that this will end for a period of time. If you are chronic, remind youself and him, that life will go on between the hits. Above all, you need to keep telling yourself this is not a life ending, life threatening condition. It just is what it is, and you and your husband need to learn how to deal with it while it's happening. You need to understand this, and YOU NEED HIM. Tell him that. I wish you pain free days and night, and that you and your husband can come to grips with CH, and the changes it is making in your life. Sandy |
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Title: Re: how do you handle the mental part? Post by Charlotte on Mar 22nd, 2006, 3:17pm Rapunzel, I really liked that Dr Seuss talking bit - very cute, I could almost see you. (If that wan't you, oops.) I, too, don't want to do this. I was so desparate, I learned how to use the internet and, thank God, talk here. I thought I just had 10 bad minutes, one of the lucky ones with the short hits, so I jotted down everything during the ramp up of the one that woke me up the other day, and I was surprised that so much happened during every minute for over an hour & a half. It was not even a bad one. I didn't realize it ramped up and down so much. I still feel lucky, but not because they're short, just because they stop for awhile. My husband realizes I feel better psychologically now that I've met the people on this site. He's always been a better cleaner than me, and he cooks about half the time. |
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Title: Re: how do you handle the mental part? Post by BarbaraD on Mar 22nd, 2006, 10:24pm Being chronic, I sorta envy those of you who are episodic. I don't even have an end to look forward to and have an hyper active four year old grandson that keeps me busy most of the day. He's learned that when Granny starts rubbing her ear - it's time for the O2 (he usually gets it out of the closet), then he runs for the frozen peas. He's learned to stay out of the way and "not touch" Granny till she tells him to give her a hug - then it's all better. This is just in our routine each day. But we do things that normal people do and we have a good life - we just have to take time out for Granny's headaches. Eventually you come to the "acceptance" part of CH. You can't do much about them so you just accept them as part of your routine - not easy, but eventually you do it - especially if you're chronic. I take melatonin at night and get the rest I need to get me thru the day hits. Works pretty well except occasionally, then Granny has a "grumpy" day. But I've said this before and I'll say it again-- ATTITUDE is what we have to have to keep the mental halitosis (stinking thinking) at bay. Hugs BD |
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Title: Re: how do you handle the mental part? Post by Richr8 on Mar 22nd, 2006, 11:15pm on 03/22/06 at 08:22:22, Jasmyn wrote:
Ditto here. Despite my efforts at positive thinking and positive doing, after several weeks of major hits and little sleep, I begin to lose ground, However, each day I start out thinking that despite what happend yesterday, today will be better. I am not sure how or why I keep doing that, but it carries me through. Of course finding this place this year, was a God send. Hang in there. pf wishes. rich |
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Title: Re: how do you handle the mental part? Post by LadyElaine on Mar 23rd, 2006, 4:40pm Its the lost of sleep that makes us crazy and hard to think. I always come here and talk. It helps and I seem to always find a reason to go on. I use to be chronic and saw no end. After 22 years I am now eposidic. I kept hope in my heart. I am so glad I didn't give up. There is hope and there are reasons to keep going. Count your blessings and you will find reasons to fight the depression, and hold on. |
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Title: Re: how do you handle the mental part? Post by Melissa on Mar 23rd, 2006, 8:53pm Having an arsenol helps my mental well being. ;;D Knowing that as time passes, it will come to an end, helps my mental well being. Making a list of all the things I will do after my cycle is over, helps my mental well being. During my cycle tho, I am cranky, but not as bad as I used to be. mel |
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Title: Re: how do you handle the mental part? Post by marlinsfan on Mar 23rd, 2006, 8:56pm I'm episodic. I just tell myself it will pass, and so far, it always has passed. |
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Title: Re: how do you handle the mental part? Post by llreed on Mar 23rd, 2006, 9:23pm Dear Rapunzel, I've read alot of good advice and suggestions here. Take them and and think. Here is my little point of view. Just know deep down inside it won't kill you, and in sometime it will pass. Love your life because no one will have one like yours. And when you know life is good and your are free do the little things for yourself... Hot Bath by candle light, Hubby given you a back rub, coloring books with your kids, looking at photo ablum and smile. These are the things that keep me living. :) Find the treasures in life that one else can touch and you will find your reason for going on. Best Wishes and PF Wishes Always, llreed |
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Title: Re: how do you handle the mental part? Post by Jonny on Mar 23rd, 2006, 9:40pm This is the way I dealt chronic for 30 years. "Deal with it or it will deal with you" Get a doc, abortive and preventive meds....fight the fight to win.....if you dont you will lose out in life. |
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Title: Re: how do you handle the mental part? Post by E-Double on Mar 23rd, 2006, 9:45pm on 03/23/06 at 21:40:48, Jonny wrote:
Perfect! My mantra is this......... "IT IS WHAT IT IS" so breathe and try to live to the best of your abilities. Another way to look at it is this..... It won't kill you and there are plenty of people in this world who live with a condition that they know will bring imminent death. We are lucky in many ways. It is a dreadful pain but it goes away. It will fuck with your head (excuse the pun) until you get a grip! Best to all and positive thoughts! Eric |
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Title: Re: how do you handle the mental part? Post by mynm156 on Mar 23rd, 2006, 10:24pm Sometimes it is really hard. All I can do is dont let the Beast win. ITs life is hard enough and ALWAYS remember that YOU ARE NOT ALONE!! Hang Tough! Good Vibes Your Brother in Pain MYNM156 |
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Title: Re: how do you handle the mental part? Post by boybath on Mar 24th, 2006, 5:25am I agree with E-DOUBLE the bottom line is it can be hard but thats life. I found myself crying at work the otherday all in a self pity todo which is understandable cause im getting hit 1 to 2 in the day and 5 times most nights all at over kip7+ . Bottom line is I cant make it go away I accept it and adjust, its all I can do. And when I do get down, i think of millions of kids in Africa living in rags dying of aids. My work mates dont really understand what its like for me but Im lucky comparred to those millions of kids. So I count my lucky stars that it could be ALOT worse. take care Mad from Bath |
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Title: Re: how do you handle the mental part? Post by Chip80 on Mar 24th, 2006, 2:26pm What a great question! I know that the attacks will pass so I don't panic over it. What I do find my self thinking about in the middle of the night is how I'm going to be able to function at work (7am) the next day when I've been up multiple times a night taking hot showers and/or working out to abort and deal with attacks. I have also been successful with self-hypnosis to help relax and make it through attacks, although I still don't get much sleep. I've been episodic for 20 years and it hasn't affected my ability to work so far, so I just need to stop thinking about it. I feel for you if you need to deal with your kids during an attack. I honestly don't remeber how I did it, my kids are 20 & 22 now. I guess I'll give the credit to a great wife who knows that I just need to be left alone when having an attack. Hang in there and enjoy the good days, and always look towards the light and the end of the tunnel instead of focusing on the darkness. |
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Title: Re: how do you handle the mental part? Post by superhawk2300 on Mar 28th, 2006, 4:59pm I find meditaiton to be very benfical to help keep my perspective, and I try to express my emotions regularly. I know that there are millions of people who suffer worse than me and millions who don't. I try to live a mission in life and by being in integrity with my beliefs and living in service I draw energy from the world. In other words; it may not seem like it at times but I know it could be worse. When I help others I help myself and the world provides ample opportunity to feel great. I really believe that my best feels better than other peoples best who don't have this to compare to. Sorry if this seems "pie in the sky". I am not trying to diminish or disrespect the severaity your pain, just trying share my motivation that has helped me. Peace to you |
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Title: Re: how do you handle the mental part? Post by neetnut on Mar 29th, 2006, 2:02am I know exactally what you mean about the mental part. Sometimes you feel just like giving up. You feel guilty, tired, frustrated and just plain whipped. Guilty for the trouble you put your family through. Tired from fighting these CH all the time. Frustrated because they is no cure, and whipped from lack of sleep and the exhaustion after an attack. Glad I found this site also, finally people who understand. :) Anita |
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Title: Re: how do you handle the mental part? Post by yikes-another-one on Mar 29th, 2006, 5:05pm so many people have never had to change their lives to accomodate an illness. It is frustrating, to not be able to remember important things, to give up house chores to pace or rock...and then to be physically and mentally tired... All my relatives are like, "You can't do the dishes, because you had a headache???" and they tsk at me.... but hey, I really know when I can push myself or when I cannot. so I gave up being superhuman and now just take it all one day at a time. This web site helps us keep perspective, give us reality checks and support.... It can wear you down, but you know, we are survivors...and we will manage... just don't dwell on the compromises, instead rejoice in the pain free breaks you eek out, and enjoy the time you can. It's rough, and it sucks, but we are stronger than the monster that torments us...we can take back our lives, instead of being a victim, we can be the winner...cheat him out of his time... find the oxygen, or pill or whatever it takes to decrease the suffering....and never let go of the hope. Hugs! TJ |
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Title: Re: how do you handle the mental part? Post by Eye Dee 10 Tee on Apr 8th, 2006, 1:49am This is my first post here, but I just had to reply on this topic. The mental part is vital, as I have found nothing that works for me in the drug area. I cope with exercise, though now that week five of this cycle decides that I should have 4 episodes a day, it is getting tougher and I am physically sore and tired. I just keep thinking of the good things and picture myself repleling down the face of a cliff while being anchored to these good things. For me its the wife and three kids. I am not very good at figuring out where I am on the kip scale, as each day my energy level and perception is different...and they all feel like a ten to me. I just try to outrun the beast and refuse to say "why me," to not give it the satisfaction of knowing that it has taken me to a 9. That's how I do it, but physically it is taking its toll and I have to grab hold of faith that tells me it is going to end soon. Thanks for letting me rant. |
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Title: Re: how do you handle the mental part? Post by kcopelin on Apr 8th, 2006, 7:41am From the perspective of an episodic CHer for 25 years who is now chronic, dealing with the mental/emotional part is alot like dealing with grief. First, there's denial-this can't be happening again, must be a sinus infection or brain tumor not another cycle. Then there is anger, okay in my case absolute rage. Then there's trying to cut deals with God (if you take these headaches away I will never do anything bad again in my life). Then there's a horrible sadness, not because its unfair (no one ever promised me a fair life) but because it hurts my loved ones so much. And finally, acceptance. It is what it is. There are 24 hours in a day and even though headaches may steal 6 of those-still got 18 left. I figured it out the other day-the first 25 years of my life were headache free, the second 25 have been spent in Clusterville. My major coping mechanism is spiritual. I serve a mighty God and His strength carries me when I can't take another step. Wishing you PFDAN kathy |
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