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Title: New and naive - help! Post by Candy on Jun 18th, 2002, 5:16pm Hi anyone and everyone! I'm new at both the group and the net in general, so I hope you guys have tons of patience - like you'd be here if you didn't! My hubby, J.P., and I just registered, so I'll give you just the facts to try to keep this short. I've never been through an episode with him, but I've heard lots, and just the thought makes me feel determined and like I want to sit down and cry all at once. He's fortunate in that he only suffers every five years, lasting 2-3 mths. I'm trying to find out what might lessen pain, etc. for him and the site is great for that, but I feel very disorganized regarding what I should be doing to prepare myself. He's due for another round in the spring of 2004, so I have some time to work with. We have a son who will be 5 at the time and I'm worried about him, and his effect on J.P., and vice versa. If someone could suggest a plan of action or even a base to start with, we'd both be very grateful. Thanks so much for this forum - I can't tell you how wonderful it is to feel as though I'm getting somewhere! Look forward to replies, and thanks again! |
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Title: Re: New and naive - help! Post by Ted on Jun 18th, 2002, 10:09pm I'm not sure what you're asking. Prepare yourself mentally to witness his pain or prepare yourself so you're ready to help him through the attacks? If the prior, start watching lots of Wes Craven movies and desensitize yourself to seeing people in lots of pain. If the latter, ask him what it is that he needs of you during an attack -- Back rubs? Being left alone? Etc... |
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Title: Re: New and naive - help! Post by paul_b on Jun 18th, 2002, 10:35pm Hi Candy and JP. Looking for a base: remember you have control of only 3 things---your thoughts, your feelings, and your actions. First, you seem concerned about doing things right---that's not going to happen all the time and its important to not take it personally---we are human, not saints. Get your thoughts in order so it will be easier to acknowledge your errors. Second, taking responsibility for your own feelings and sharing them will get you through the anxiety and fear of the unknown. Third, it will help if JP tells you how he behaves when the Beast arrives and what he wants and doesn,t want. Fourth, yes the whole family affected. Knowledge leads to caring actions. Keep your child informed. JP won't die but he is hurting when "it" hits. This is the base I used to keep my family whole, and for me, my dogs were actually my best comfort. I even had one named CLUSTER. Petting them was somehow very soothing. Been dealing with CH for 23 yrs. Learned some of this stuff the hard way. Excluded the wife and daughter. Big mistake. JP is fortunate to have you. Just being by his side and caring means a great deal. CAUTION, don't make his pain yours. It doesn't belong to you. My best to you both, stay in touch. |
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Title: Re: New and naive - help! Post by Candy on Jun 18th, 2002, 10:42pm Thanks, Ted. I'm not big on Wes, but how about volunteer labour room coach - when new dads pass out or something? Reward of a new baby must match up to end of the cycle. I get it, and I'll work on it, and we've started discussing how I can help. Now, what about our little guy? Do you - or does anyone else - have more detailed or specific suggestions than those I found in Family Services? I'm thinking of support groups specifically for "kids of...", books, unique and effective ways of explaining at his level. This is the part I seem to have the most trouble finding help with. He's very affected by our normal, married-life arguments, so I'm really concerned about his take on this. |
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Title: Re: New and naive - help! Post by Ree on Jun 25th, 2002, 10:05pm Hi Candy I am Ree and my husband Dave suffers from CH and has for about 20 years (((IM sick of counting))) I know its more than 16 anyway. I was a single mom of two boys age 6+11 when Dave and I hooked up. His first cycle came the summer of the first year we were together and has been happening every 1 1/2 to 2 or 3 years since then... Some cycles are longer than others depends on the headaches themselves with Dave, there is no magic clock (so dont keep counting on that 5 year break...) My boys have always dealt with the CH in their own ways... they realize that it is horrible when we go through it... and to leave Dave alone if he wants to be alone. Our first two cycles together were in 1988+1991-. My daughter came along in 1994 an angel of our own... right after she was born BOOM another cycle... she has learned fast how hard having a Daddy with CH can be. I have had to quit jobs to support him mentally because he would call me screaming in the phone while I was working in a busy hair salon. He cannot take care of her when he is having an attack. Since having our daughter the gap between the CH cycles has gotten smaller... He had another cycle when she was 2. That was when she started to imatate his headaches by saying she had a stab in her head...what we think has been imatation is a great dramatic duplicate of a CH or maybe even CPH so we will be looking into that soon. About a year and a half later, Dave got injured on a trampoline. A few days later he started a cycle we were not expecting. That was his longest. It lasted 7 months... I dont know how we did it. He looked like a junkie. My then teen agers wanted to die when they brought their friends into the house to find Dave circling the den holding his head in his hands. I would wake in the night and find the pillow beside mine bare and wonder if I was going to find him dead upstairs... either because his head gave out or because he did something to hurt himself. He almost lost his job because he came home to take an injection and was found off his route. It was a night mare... so ...... sometime in 2000 when we were in the midst of a new cycle one that came just as unexpectedly as the last, I got on the computer to find a cure for this affliction that caused us to loose friends, jobs, and a giant piece of our souls. Thats how I got here... thankfully Dave took the advise of the "wise ones" here and had the shortest cycle ever 10 weeks. Dave got his information through me because you see Dave is my "silent" partner here... He doesnt type well so I am his hands. I post and let him know what goes on from day to day. He is frightened to think they will return again... almost a year and a half has passed since the last cycle... I am counting, he is not. I support him and when I dont I try to support others. I was just going to say hi and tell you to email me... But telling my story again has been a little cleansing. I hope they never come back and I pray that your hubby gets his 5 year reprieve. No one is lucky that has CH no matter how long the remission. God Bless you and your little one come back often and let us know how we can help and you can email me if you want Ree16angel@aol.com. I would love to help you... Ree |
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Title: Re: New and naive - help! Post by kristi on Jun 27th, 2002, 10:14pm Ree, you are a beautiful person. Just reading your post made me feel good - despite the fact that it is a sad and tragic tale - you obviously handle it all with grace and love. Thank you. Hi Candy; My husband is episodic, 11 years. His cycles usually last about 3 months, return after 9 months. We have been together for 7 years, so I have seen about 7 cycles. Our son, Connor is 4 and a half. Thanks to nuerontin, hubby went about 18 months between his last cycle and the one he just finished. Last one, Connor had just turned 3 and was really too young to understand anything. He is also sensitive to things like our arguments, so I opted to keep him in a different part of the house while Scott was having a CH. But this April, when the CH returned, Connor at 4.5 was old enough to understand more and not willing to be kept out. So, hubby decided to explain what he could and include him. For the daytime headaches, it became a ritual that it was Connor's job to help daddy get his "medicine," which meant helping turn on the oxygen tank and putting the mask over daddy's head. He was very proud of himself for helping daddy feel better. He also understood that there was a similarity to us giving him medicine when he is sick. Quite frankly, I think Connor handled it all better than I ever did. So, do not worry yourself too much. And Ree, during the cycle and continuing until now, Connor tells me sometimes that he has a headache! (but it cracks me up because he always does it as an excuse to get out of something, like cleaning up his toys. They learn fast, I tell you.) But seriously, I have noticed that he now seems more enlightened that other people feel bad sometimes, not just him. I hope it makes him more empathetic to others. Good luck to both of you ladies. K |
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Title: Re: New and naive - help! Post by Candy on Jun 28th, 2002, 10:50am You're right, Kristi - people like Ree, just by being themselves, are a wonderful and much-needed reminder that attitude and approach can make a world of difference. I think the fact that I've never been in cycle with my hubby is getting in my way a lot. Been looking at it's approach like a whole new thing I've never dealt with, when really, a lot of the same techniques and stuff that I'd use in pf day-to-day life apply. Like involving your child in matters to help them understand and cope. Duh! I guess my first instinct is to protect the little guy from the nasties of the world, but that never gives them anything long-run, does it? Thanks for reminding me that the CH experience doesn't exist on a planet of it's own. Also that kids don't have all the junk in their heads to clutter issues like some adults do - not mentioning my own name, of course...LOL! By the way, I've read some of your other posts, and it seems to me that you're in that 'beautiful people' club too...leading from the heart to reach others. Thanks again, and take care! |
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Title: Re: New and naive - help! Post by nancyc on Jun 28th, 2002, 11:20am I admire people like Ree and Kristi and all the other supporters who go thru this hell with their mates...I live alone, and have my pup Toby to get me thru the rough times when i am pacing the floor and rocking and moaning...I cant count the number of times, Ree has emailed or IMed me to give a Helping hand...I am grateful I have a mother that understands my pain but unfortunately she lives in another town...so my Family is here at ch.com...Hang in there Candy and reach out whenever you need to...there are alot of good people here....and Ree will make you laugh when you feel like crying....Ree , the part you mentioned about "losing a giant piece of your souls " really was the truth...I could really relate to those words..thanks sis..smiles,nancyc |
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Title: Re: New and naive - help! Post by Margi on Jun 28th, 2002, 1:05pm Welcome, Candy and Kristi. :) You two sound like you really understand what it is to give unconditional support and love. My hat's off to you both. Ree, as I told you in mail when you posted this - you ROCK, lady! What wonderful work you do :) When I hear of 'supporters' who spend their time lamenting the sleepless nights, the absence of social life because of clusters, etc. etc., the hair on the back of my neck just stands up. And, believe me - these 'supporters' ARE out there, gang. I LOVE to hear of supporters who give from their hearts like you all do. |
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Title: Re: New and naive - help! Post by Donna on Jun 30th, 2002, 5:55pm Ree.......I don't know what to say to you.........you are a most wonderful supporter and a huge bonus to this site. Most of my story is hidden away somewhere in the back, dark basement of my heart. I really don't remember a lot of the more painful periods of my life. My husband couldn't stand to see anyone be so weak as to show an outward display of pain, so I hid. I crept out of bed at night so as not to wake him. A lot of it was my own fault.........I was a weak, naive person and allowed this to come to be. When I grew up (age 33) I started defending my self and the agruments started and grew and grew until I had had enough. My 7 yr. old boy, 4 yr old daughter and 14 month old son said goodbye and left. The final straw was when my 7 yr olds principal at school had me in for a conference and asked why my son didn't laugh or show much emotion. We had a hard time with my clusters, I'd lost one good job after another, but thanks to a few good friends and a strong desire for my children to grow up in a loving and nurturing atmosphere, I can now look back and say I think I did the right thing.....My ex died 5 years ago and...........funny thing.............I remember the good times much better than the bad. I think children remember good things over bad too. They also learn that life isn't handed to you on a silver platter. Your attitude will rub off on the little ones. Be prepared, have a plan and you will make it just fine. Not easy, but you sound like a very loving and understanding person, and always remember..........we are here for you....and there will be others in the future that will need your support here too. We are very glad that you found us. Welcome to the family of (I'm stealing someones' term, but it is too good not to use) Clusterhearts. |
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Title: Re: New and naive - help! Post by Svenn on Jul 1st, 2002, 4:29pm What can i say. The main thing for you is to be open to your son about this. Next is to let your husband know that you are there when and if he need any help. Some of us like the feeling that we are not alone,but we are not happy when you are "hanging"on our shoulder when we are fighting "General Cluster"and his beasts. I got a girlfriend with cluster that like her husband to give her wet towls every 15 minutes or so until the attack is over.Some clusterheads hate people around under the strugle,so its not easy. me for instance can have people in the same room as me,but i`m gonna kill those who are trying to talk to me under my strugle.just let me be ALONE in my "safe corner"with my oxygene and imitrex-shots until its over. at last i has to tell you as a have told you clusterheads before. There is always some light`s in the end of the tunell for us clusterheads.That`s you.Remember that you and your son is your hubby`s light when he is strugling the beasts. Your Friend in Norway and just another clusterhead Svenn |
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Title: Re: New and naive - help! Post by Slammy on Jul 1st, 2002, 5:32pm Isn't it typical of a wife to make contingency plans for an event not schedule to happen until 2004?? I mean sheesh! 1st off, I am envious that your husband has a five year remission. 2nd off, I find it admirable that you are being so proactive in understanding what we all go through. But you may find that the advice varies as much as the people do in here. I, for one, suffer my attacks secluded. I do not want my sons to witness the agony their father goes through. However, they have been educated on what their father goes through when the cycle returns. I have been blessed being married 17 years ( 119 in Slammy years!!! ) to the same woman who is sympathetic, supportive, and understanding during these attacks. Paul is absolutely correct! Ths is his pain, not yours.... don't suffer with him.. that just adds to our agony. Just ask him how you can support him the most during these attacks... he'll tell ya. As far as your son is concern... don't over emphasize the event... it may make it more traumatic for the boy ( it's not his pain either). Just one of many clusterhead opinions... Slammy 8) |
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Title: Re: New and naive - help! Post by Candy on Jul 2nd, 2002, 10:40am Hey everyone! Slammy, where would you guys be without us? Did it take you more than 10 seconds to come up with five answers? Yeah, yeah, I know...lol. We're very grateful for the length of J.P.'s remission; keep your fingers crossed that it holds. And one of the things I love best about being here is the variety of insights and thoughts. I really do get something out of each reply. Like Svenn's "light at the end of the tunnel" - a lovely and useful thought. I'm going to post it on my fridge when the Beast arrives to remind myself to shine, not whine. Nancy, Donna...I want to cry when I read of sufferers who live with their pain alone - even when they're not physically so. Yet I admire the fortitude or whatever it is that keeps such people coming back each day, still trying. Not only a sufferer, but your own supporters too. What an accomplishment! Paul...you bring more pure logic to these pages than anyone I've encountered yet. If you'd lived in the Victorian age, you'd likely have been slapping hysterical women left, right and center ;) ! Seriously, my hubby is much the same that way and at times, 'just the facts' is exactly what's needed. Margi...thanks for the nod, and for the tremendous contribution you make here. When I read your posts, I'm always reminded of a quote by Kahlil Gibran... "There are those who give and know not pain in giving, nor do they seek joy, nor give with mindfulness of virtue. They give as in yonder valley the myrtle breathes its fragrance into space. Through the hands of such as these God speaks, and from behind their eyes He smiles upon the earth." You are an example in that you give naturally, and that's a rare gift. Everyone here has something to offer, and all of it is worthwhile and valuable. I only hope that I will be able to give a little of that right back. Thanks again! |
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Title: Re: New and naive - help! Post by Ree on Jul 5th, 2002, 7:37am Candy that was beautiful friend... thats all I can say... Ree |
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Title: Re: New and naive - help! Post by Candy on Jul 5th, 2002, 9:04am Aww, it weren't nothin', but thanks honey! Nice to hear from you! I'm not big on organized religion, but I am a believer - the what is just sort of vague. Kind of made up my own theories and rituals as I went along, but with a lot of help. If I had a 'bible' it would have to be Kahlil Gibran's 'The Prophet'. He wrote about Pain, and it's very applicable to supporters, although not sufferers. Anyone looking for a little serenity and peace, encouragement or just to get your head back to straight should check out his writings at: [url][/url] And for more 'feel good' stuff right here on site, if you haven't seen Elaine's SOME THINGS YOU KEEP on the general posts board it's a must-read. Keep in touch, Ree, and my wishes to everyone for sunshiney days and peaceful nights....C. :) |
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Title: Re: New and naive - help! Post by Candy on Jul 5th, 2002, 9:10am Okay, it appears I'm having some trouble with this silly hyperlink thing - can anyone explain? Sorry, friends and neighbors, but it looks like the archaic do it yourself method will have to do for that Gibran site: http://www.cc.columbia.edu/~gm84/gibtable.html or just search Kahlil Gibran and look for 'the Prophet'. P.S....just checked the post and I get it now! Si, senor, si! :P |
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Title: Re: New and naive - help! Post by Ree on Jul 5th, 2002, 9:14am Thanks and also reading above thanks to Nancy Margi and Donna and Kristi for your kind words.. the things I do in the name of this horrible condition I do for love. I only wish the support came back in the other direction from HIM when I need it. Thank God and Gilbran or who ever that I have you guys... love Ree |
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