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Title: I feel like a bad wife Post by gitgraphic on Jun 13th, 2005, 6:52am My husband has been suffering with clusters for as long as I have known him and before that (20+years). I have always been supportive, but I am starting to loose my supportive feeling. His headaches are starting to effect our family life. I know this sounds uncaring...but it is so hard. Everytime we (family of 4) have anything planned to do we must can cel, due to a headache. He seems to be going through the WORST set he has ever had and it has been going on for months now. I just feel like a really bad person because I just want to tell him to get over it and shut up! :-X Am i alone?? Am I a horrible person??? |
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Title: Re: I feel like a bad wife Post by Redd715 on Jun 13th, 2005, 8:54am The feelings you are experiencing are the reason this special board is here. It's not uncommon for supporters to get to feeling burned out sometimes, and need support themselves. You are not a horrible person, nor are you alone. You can't take his pain away, nor can he stop it from coming. Frustration and anger is normal, but try to focus that anger where it needs to be. Agains the beast that rages in his head. Not against your husband. Vent all you need to here on the board, so you are available for him when he needs you most. edit to add: http://www.clusterheadaches.org/family/fam_tips.htm Please read this and take from it what will help you and your family. |
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Title: Re: I feel like a bad wife Post by Margi on Jun 13th, 2005, 9:55am on 06/13/05 at 06:52:12, gitgraphic wrote:
nope and nope. You're human. It's hard, sometimes, to stay positive and supportive when cluster headaches invade every nook and cranny of your life. What you need to keep telling yourself is that he's not asking for this, he's not doing this on purpose and he's (I guarantee you this) hating it WAY more than you are. Never lose sight of that - when you're feeling sorry for yourself, that your husband is the one who's more at the mercy of an unseen and terrifying fate right now. On top of the horrific pain he's going through, he's also got guilt piled on top of it all, knowing that he's frustrating his family. :( When the walls start closing in on me, when cluster seems to be taking over our life and my husband can't seem to catch a break, my method of battling is to give myself some time off it all. Even if it's just to go for a workout, a walk, a coffee with a friend, even just a bubble bath. I just totally shut off everything outside and allow myself to forget for an hour. I try to pick a time when I know Mike is ok and isn't going to get hit. Sometimes, even just an hour like that is enough for me to find my balance again and re-center. We have to be strong, Git - it's our only choice. I'm always here if you need a shoulder - please feel free to email me at moxie_miss@hotmail.com, anytime. I've walked in your shoes, darlin - and sometimes it's a pretty bumpy road. BIG hugs, Margi |
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Title: Re: I feel like a bad wife Post by gitgraphic on Jun 13th, 2005, 9:57am It is good to know I am not alone...thanks! |
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Title: Re: I feel like a bad wife Post by TxBasslady on Jun 15th, 2005, 2:32am Ya know...I think we are so used to being able to have some control over things in our lives....then when something like CH invades our lives, we find that we no longer have control. CH is tough. It turns our world upside down sometimes. The role of a supporter is sometimes difficult. That feeling of being alone...and knowing there's nothing you can do to make things better. I'm a sufferer....and I will say that we sufferers have the same feeling of being alone....and the same desire to make things better....even though we know we can't. The supporters in our lives are what keeps us going. I couldn't make it without the supporters. Margi gives good advice. She is a great supporter, not just for her husband, but for all of us here. I hope that you will take time to contact her.... No matter if supporting or suffering....we all feel the pain. Good luck to you....and lots of PF vibes to your hubby. Let us know how things are going. Jean |
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Title: Re: I feel like a bad wife Post by Margi on Jun 22nd, 2005, 2:43pm on 06/22/05 at 14:01:29, cazman wrote:
Cazman, then tell her that - don't let yourself freeze up and just tell her that you love her. Then give her this website address and tell her that it WILL really help her to talk to other supporters. If she's not comfy posting on an internet message board, please feel free to give her my email address (moxie_miss@hotmail.com) - I don't mind. I've been a supporter for 20mumblemumble years now and I've talked with lots of other supporters. It's very therapeutic for us to find each other and, trust me, there have been times that I would have pulled the plug (or applied the pillow over the face) if I hadn't had other supporters to lean on. If there is love, nothing is insurmountable. |
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Title: Re: I feel like a bad wife Post by Belka on Jun 23rd, 2005, 2:34pm I am relatively new to this. My husband had one episode while we were dating and another towards the end of my pregnancy with our daughter. Every time we tried to get him help, the doctors looked at us like we were crazy. He went a little over 2 years with no headaches, then WAHM! They're back! I remembered something my husband said a military doctor told him. He said he had cluster headaches, but he said they were just like migraines (and they are not!). So, I looked up cluster headaches on the Internet. His symptoms and cycles are classic CH. At least now I feel like I can do something to help him. At least we know what we are fighting and that neither of us are crazy. I know before we found out about CH's, I was getting so frustrated and mad at my husband. I thought he was over-reacting to migraines (Because I get migraines and the way he acted didn't fit...the restlessness, the screaming, hitting things) Now, I feel guilty for even thinking that. The worst I had ever seen him was this past Sunday, and it scared me to death. It gets very draining, and I know my husband has it a lot worse than I do, but I don't have an escape right now. I had surgery less than a month ago. He started clustering about 1 1/2 weeks after my surgery. I still am not supposed to lift or carry my daughter, and being 2 1/2 years old, she can be very stubborn at times. So, I have to take care of my daughter and my husband, while trying to take care of myself. And my daughter is old enough to know something is wrong with daddy, but she doesn't understand why he's always upstairs with a headache when he's not at work. Then she gets upset, and I feel very overwhelmed. We're still working on getting a doctor that knows the treatments for CH's, but it is all taking time. To top it all off, we have no family near where we live. So I don't get many opportunities to "escape", even for a bath. It's nice to know I'm not alone. |
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Title: Re: I feel like a bad wife Post by cootie on Jul 6th, 2005, 11:20pm I know ALL TO WELL what yer talkin about gitgraphic.......when all this hell started a long time ago neither of us knew what the hell was goin on.....of course Brad wouldn't go to a doctor and thought it'd pass......or we thought the worse of what it COULD be. We'd go out somewhere to see freinds and have a good time and he'd get hit and wanna go home....I resented the entire deal and would actually get mad at him. Seem'd it happen'd everytime we had something fun goin on. He'd get hit (we didn't know what it was tho at that time) and he'd start to get antsy and tell me we were leaveing and run off to the vehicle or bike waiting for me. No one understood our abrupt departure.....not even me !! I'd get mad about it and bitter.....he'd get hit at home and be impossible to deal with. He'd be up at nite crying and screaming pounding on the floor....I wasn't very sympathetic......what the heck......I didn't know what was going on let alone understand his reactions!!! He'd get hit when out to eat or when we had company here and life just seemd' to loose all it's NORMALCY ! We get alot of company from time to time and he'd DISAPEAR and not come back. People would sit and WAIT and not understand why he just up and left the room or porch like that and NEVER come back. It got VERY awkward."Fineally" I got him to start seek.ing a doctor's help......went the gauntlet with that.....sinus, stress, teeth.......you know the drill. Fineally got a lead on what it mite be.....and got INFORMED. I found out the best way to deal with it is to try and continue with plans but moderate them if he is cool with it.......if you have family stuff going on and he is gettin hit or in a bad cycle and afraid to go away knowing what will happen several times.....go ahead and go by yourself. Or run to the store whatever......go outside......sumthing......keep busy.......but like I said....."IF" he is cool with that !!!!!! And if he is handleing it ok also and has what he needs. I don't mean to say abandon him......that's not what I am saying. I know Brads routine with it....I set stuff out and made sure he was ok and went outside to work or just got busy doing normal things and left him to his quiet he wanted verses sit there in the room feeling guilty or have him yell at me. He gets a bit testy. He'll be tryin injections next round so hopein they act faster then the long gruelling agonizeing wait with the pills. I used to sit and TUNE OUT while he got hit when all this first started close to 20 years ago......nothin I could do. He did his thing once he got meds (before that was one foot in hell for hours on end)......I was stressin out bad jus sittin there listening to him suffer. So not to sound uncareing but....I go get busy even if it is jus sortin laundry or sewin some stuff or cleanin the cat boxes if ya can't get outside. There's different kinds of pain just as there is different ways to suffer. Just don't let it kill ya Pam PS: There are several people on the board from PA....am sure someone can help with a GOOD doctor ! |
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Title: Re: I feel like a bad wife Post by Margi on Jul 7th, 2005, 10:32pm excellent post, Cootie. Spoken like only a true veteran can. That's what I do too - I go elsewhere. Our boys know how to handle these things and Mike sounds a lot like Brad. He doesn't need me there, wringing my hands and whining that I can't help him. He usually comes downstairs here and sits at the O2 tank with his ice bag and forces himself to stay calm (that's been his biggest defense and toughest lesson to learn in this battle). Me, I stay upstairs, usually I just sit and comfort Barly - he gets pretty upset when Dad is hurting. Never thought of cleaning the cat box but it's downstairs and then, technically, I'd be interrupting him if I did that so *phew* YAY! I don't have to clean the cat box! ;) Has Brad tried the 'trex nasal sprays? They really help Mike and work in about 15 minutes. He's not much into needles. But those pills are a damn waste of money and time, if you ask me. They take WAY too long to work and it's too much trex in the system. Spray comes in 5 or 20 mgs. The pills are 50. WAY more side effects. Only a true supporter knows what it's like to be on this side of the fence. The cancelled-plans-life-on-hold-time-bomb-in-the-closet-can't-wait-for-remission life that we lead. We're going on 7 months here with this cycle. It's gettin' old. Anyway, I just wanted to tell you what a great post that was - you're a wonderful writer! |
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Title: Re: I feel like a bad wife Post by Tiannia on Jul 8th, 2005, 11:12am Margi and Cootie you are great ladies. I get so mad at myself when my HA screw up plans. Guess that is why we stopped making them for the most part. a little over 2 years now that I ahve been fighting these bastards and dont really have a treatment more then trex shot and cold. It kills me inside to see how my kids react to me when I am getting hit. I dont always have the chance to get away from them when a cluster starts. So I have to fight it while they are there. My husband cant really deal with them. I do my best to get away from him because he trys to hold me. you all understand that I "cant" sit still. So that hurts him that the little thing that he is trying to do, he cant do... well you get the idea. My insurance is now in effect at my new job, so I need to get a new neuro. I am just not looking forward to those fights again. This board is am amazing place. There are great people here, both supporters and sufferers (who also support the supporters and other sufferers) Vent away. Yell scream, cry whatever you need. This is a safe place to do it. Tia |
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Title: Re: I feel like a bad wife Post by Sandy_C on Jul 11th, 2005, 2:31pm on 07/08/05 at 11:12:05, Tiannia wrote:
Tianna You couldn't have said it better. You are describing my husband perfectly. I know he feels "hurt" when I have to rebuff his offers of help. He tries to massage my neck during a hit, and I probably am not very nice in my response to his efforts because I smack his hands away and tell him not to touch me. The look of hurt on his face makes me want to cry, but I can't help it, or him. I've learned to ask for his help in small ways, like please, can you get my ice pack, ice water, etc, etc. At least he feels that there is SOMETHING he can do for me. After the worst of the CH has passed, he will gently rub my neck and tell me he loves me. That's the best "cure" for anything. He keeps me going on and keeps me strong. He's a wonderful man. |
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Title: Re: I feel like a bad wife Post by jackied on Jul 12th, 2005, 3:34pm Hi -- I know how you feel, gitgraphic. Last night, while my husband was in the middle of an attack, I felt myself snap also. I just came back from a long trip and have been completely exhausted and felt I was at the end of my rope -- trying to deal with a household full of people and a husband who kept constantly getting attacked by CH. I actually snapped at him and then realized what I was doing. So I just went to bed, giving myself a much needed time-out. I am a new wife and this is the first CH episode since we got married two months ago. I saw this when we were dating but it's a lot harder up close!!! And being someone who always took care of people around me (especially those I love), it is doubly frustrating to see that there is not much I can do to alleviate his pain during an attack. And I must have been really internalizing this frustration to snap last night (add my exhaustion to that, too). I woke up in the middle of the night when he came (mercifully!) to bed. Apologized profusely with loving whispers, hugs and soft kisses. When he had another attack in the middle of the night I got up with him and let him know I was with him and was going to "ride" the episode with him. But it is hard. Which is why I decided today to look into this site and read what others have to say. Through this site I'd probably learn more about CH, how to best cope with it, and hopefully not feel too overwhelmed and alone. Hopefully then I will be able to be the wife he needs at difficult times as well as the good ones. Thank you all for all your postings. I have been reading them in the past couple of hours and I have been moved, enlightened and comforted. Gitgraphic, thank you for your honesty and candor. It makes me feel better to know that we do not have to be superwomen to handle this. That it is okay to feel bad (and then go back to being loving afterwards). But it does help to have a support network like this. And here's to all of us! :) Thank you all - JackieD |
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Title: Re: I feel like a bad wife Post by AussieBrian on Jul 15th, 2005, 5:07am Hey Gitgraphic Next time you get an attack of the guilts and feel as if you're being selfish, take a huge breath and a few moments to try and imagine the utter desolation your man would be facing if you weren't there. We're all just ordinary human beings with normal needs, however, life has thown us a monumental challenge, and it's perfectly natural for that challenge to become daunting from time to time. We get tired and ask ourselves things like "Why do I have to be the strong one?" You're never a bad wife!!! Hang in there and take to heart the words of advice, wisdom, and encouragement that the wonderful people on this board (who are all in the same boat as us) can offer you. You're in my prayers Love DennyM Edited to add: Oops! Posted under Brian's name instead of my own. |
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Title: Re: I feel like a bad wife Post by wreed on Aug 27th, 2005, 5:53am I can understand where you are all coming from! My husband was diagnosed with "the beast" in July, 1997. He still doesn't remember the trip to the hospital ER that night because of the pain. I can't really figure out what causes the headaches. What are known triggers? I'm not talking food triggers, I'm talking stuff like: stress, petroleum odors (he's a dump truck driver for a company that hauls asphalt for roads, and the last time he had the attacks he was hauling diesel fuel). Tomorrow, we are supposed to treat the kids to a trip to Six Flags. We have promised them all summer we'd take them. This morning, on the way out the door, he said he may not be going because he's so tired. The headaches are waking him up and he has to go to work at 4-5 am anyway! He's working 6 days a week, and is exhausted. The kids are too little for me (ages 7 and 5)to be able to take them myself and I really wouldn't want to go without him. . . it's no fun! Luckily, they don't have a clue what we have planned, so if it gets cancelled they won't be upset. I am usually the one that's in charge of everything areound the house...it's killing me that I can't "make it all go away"! I want to just cry, but I can't. I want to get mad, but deffinitely not at my husband...it's not his fault, and he'd kill to have the beast go away. I need help. |
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Title: Re: I feel like a bad wife Post by Ree on Aug 30th, 2005, 9:43pm Wreed that is your best bet as far as the kids are concerned. Don't tell them your plans til you are out the door. Has your husband given up alcohol this cycle. Alcohol for eposodic sufferers usually for some reason interferrs with the meds...(though some stubborn ch'ers will argue this) My husband is a sufferer going on 20 mumble mumble years also.... It is a bummer when it takes up so much of your life and that no one can share the nightmare. It gets so damn aggrevating trying to explain these things to people. When they look at you like you have 2 heads yourself.... They say.... how long is he in remission? Are you sure? Like I would make this up!!! And Gitgraphic.... you are not to feel guilty. Anyone that deals with any medical trial would get burnt out... there is alot on your plate. Margi gives great advice... remember you can't be a good support if you are exhausted and spent. Escape, take baths, read... just get away from it if need be. I like you sit idly by while my husband gets hit.... Lately I've been too stressed from a recent death in the family to be of much use.... I don't feel very supportive lately myself.Cootie, that was some post..... love ya honey..... and I know right where your coming from.... We are no longer alone.... We are together in this.... Amen JackieD.....love ree |
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Title: Re: I feel like a bad wife Post by wreed on Aug 31st, 2005, 5:04am My husband might have three beers a year, so alcohol is not an issue with him at all. Does anyone know where I can get a complete list of triggers? Thanks! |
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Title: Re: I feel like a bad wife Post by jcmquix on Aug 31st, 2005, 6:08am on 08/31/05 at 05:04:00, wreed wrote:
Hi wreed... I am a CH Suffer'er, but I ran across your post and thought I would respond.... My wife Sassy_Lady (Jolene) was so upset when this latest cycle started for me, I was almost 3 years with out any CH, then on June 1st this thing hit like a Sledge Hammer.. I was becoming impossible to live with from the CH, she was getting FRUSTRATED that their was nothing she could do, she cleaned the house top to bottom, I was still getting the hits. I got her to come here on the site and read & post, it has actually brought us closer, she has a better understanding about CH and why we CH suffer'ers are difficult to deal with at times. As for the Question about Trigger's... Is what I have found is that when I am in cycle, many different things can become Trigger's, but if your Hubby has CH, the hits are going to come. I found myself that all my senses a highened I smell things stronger, things sound louder, lights seem brighter and the pain is so intense in your head. You both will need to find a good Preventative & Abortive meds, alternative or script meds. If your Hubby needs time alone when he is getting Hit, let him have the time he needs. Just be there for him when the hit is over, offer him all the support he needs. I have to be alone when I am Dancing with the BEAST. I just tell my wife and I go off to the Bathroom. Its just something that most CHer'ers prefer... If you need to Rant, Vent or just need someone to Talk to, their is plenty of support here for the supporter's too, the lights are always on 24/7/365. I just want to Thank You for being there for your Hubby, try to get him here on the site, so he can read and post, it helped me alot to talk to other people who were going through the same thing as I was.... Trying to be helpful Wishing Rest & PF Time to You both Charlie |
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Title: Re: I feel like a bad wife Post by Emily87 on Sep 23rd, 2005, 6:35pm my husband is also a CH. The other day I felt like you did, I've been at this for a very long time and I just got so angry at everything. I take care of people all day at work, thats my job, and then was coming home and taking care of him all night. He gets clingy when in his cycle. So at work i'm falling apart, thank God I have a decent and caring boss who called me on it. She told me to take some time for myself no matter what. So I did, decided to go to a hair salon and get a good shampoo, deep condition and trim. I went, got ignored by the hairdresser, put under a cold dryer for a very very long time and left with just a rinse. I tried very hard to be polite and even paid for the wash just in case I was overreacting. But then I got in my car, bawled all the way home about how I couldn't even pay someone to take care of me for a change! [smiley=laugh.gif] But the good news is that when I came home crying my husband and I had a good talk, and even a little shout, about how I was feeling and how he was feeling. Him: guilt anger frustration and fear, Me: guilt anger frustration and fear. Hang in there, if your marriage is good during the out of cycle times, hold on to it. This isn't you, it isn't him but it is the beast, it will go back to the hell it came out of someday |
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Title: Re: I feel like a bad wife Post by mrs mac on Oct 20th, 2005, 12:46pm [smiley=hug.gif] to everyone who has posted on this topic!! i know exactly what you all mean, and i too have had horrible thoughts!!!! the great thing about this site and the uk one, is that we don't have to be alone, there is always someone on that we can turn to!!! i can't bear to watch Andy when he is in attack, so i turn to you guys, my .com buddies and ouch uk buddies, and you are always there for me!!! i hope that i can return the favour!!!! sandra xxxxx |
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Title: Re: I feel like a bad wife Post by zanychef on Oct 20th, 2005, 3:11pm if you are still there for him at the beginning and end of the day you aint bad think i can speak for all sufferers when i say that without all our supporters the world(our world) would be a sadder place just beat the beast!!!!!! anyway you can!! zany |
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Title: Re: I feel like a bad wife Post by katyscott on Nov 7th, 2005, 12:18am i had a minor i-am-a-bad-wife nervous breakdown yesterday afternoon... guess it all got a little overwhelming, feels like the cycle will never end, our lives will never get back to normal, it is too much for me to handle with paying bills and keeping the house up and keeping the cats fed and scooped and going to work and waking up in the middle of the night to sit with him and not getting enough sleep and worrying all day... and... and... and supreme feelings of guilt because my emotional reaction of late has been "oh well, here we go again" when he gets another one... like a "ok, i know this will end, now why doesn't it hurry up and do so" feeling. like emotional numbness. that scares me. and of course then i feel like a complete whiny baby for letting all that get to me, because at least i don't have the CHs!! why am *I* complaining??? it's amazing what a 3 hour cry and a loving understanding husband (and a chocolate bar and a good movie afterwards) can do to make you feel better :) katy |
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Title: Re: I feel like a bad wife Post by kayarr on Nov 7th, 2005, 3:05am What seems to work for us is that we give these attacks as little of our time as possible. There are many things we can't do but we focus on what we can do. I do handle most of the household business. Since I do that he doesn't begrudge me sleep. (no sense in everyone being pooped and cranky in the morning:) There really isn't anything I can do for him while being hit and he just falls back to sleep after the O2 works it's magic. Our compromise is I sleep next to him on the couch til he can go to bed and stay there. If I am rested I can be a much more understanding wife and besides, he doesn't want my pity but my help and support. ps (as for shopping, he hates to go downtown so sometimes he conveniently uses his head so he doesn't have to go....:) |
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Title: Re: I feel like a bad wife Post by miapet on Nov 14th, 2005, 1:22pm i think we have all had a taste of i'm a bad wife/supporter . . . .i remember jackie emailed me that it was okay to just want my life back *L* her words stay in my heart: take care of yourself (she said lots more, but what can i say, jacks sorry for not getting it all in here *g*) i won't repeat what everyone has said here . . .y'all know it *g* love the ch-er .. .hate the ch ... keep em seperate . . .and take care of you too . . .have a game plan of what you can do when he's in cycle, and stick to the plan .. .maybe you can make sure the o2 tanks are full, or get ice, or research. but if you have a plan, are part of the battle, it's easier (for me anyway) to keep man and beast seperate *g* *positive light and energy* miapet |
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Title: Re: I feel like a bad wife Post by cathy on Nov 16th, 2005, 4:54pm I am not even going to go into MY bad wife supporting am I Margi..... ;) I've read some great replies here and my hat goes off to each and every person who lives with or supports a CH sufferer we know how bad it can get but hopefully the good times outweigh the bad...live is for living and whatever life throws at us we are a special breed we can cope because we have each other. Vibes to you all... Cathy :) |
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Title: Re: I feel like a bad wife Post by Margi on Nov 16th, 2005, 5:01pm LMAO - you know, in all honesty Cathy, I'd totally forgotten about your introduction here.... man, it seems like centuries ago now! ;) We've definitely all had our low points in our cluster supporting careers, haven't we? I sure have. This is life altering stuff - this beast called Cluster. I hate it. |
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Title: Re: I feel like a bad wife Post by mrs mac on Nov 16th, 2005, 6:40pm to margi and everyone else who has posted on this thread!!! there is not one supporter out there who hasnt' felt like this!!!! we are only human and there is only so much that WE can take!!! that is what these sites are here for, so we can speak to other people who feel the same way as we do supporters need support too!!!!!! lots of love to all supporters out there,and of course not forgetting our sufferers!!!!!! we will always be there for them sandra xxxxxxxxxx |
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Title: Re: I feel like a bad wife Post by kayarr on Dec 7th, 2005, 10:39pm Now I am back to the crappiest wife in the world....who needs a stoopit pedestal anyway???? I take the role of be everything to everyone very seriously. Maybe too seriously. I hope and pray that I can let go of the weak legs and the bad tummy and just plow ahead:) |
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Title: Re: I feel like a bad wife Post by Lietuvos on Jan 29th, 2006, 12:47pm Your not a bad wife...you just don't understand. I'm sure your husband would rather cancel his headache instead of your plans. i have too suffered for 20+ years and i know i would rather cut off my own leg with a rusty spoon than have an episode.I know it's hard to deal with a person who suffers (I lost my wife because of CH) But it's harder to deal with the suffering. I have lost a wife and countless jobs because of CH, my pain is both phisical and emotional.I created a post for supporters to help explain the pain, you may find it alittle humorous....but then again...you don't get clusters. they call them suicide headaches for a reason. |
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Title: Re: I feel like a bad wife Post by Margi on Jan 29th, 2006, 5:43pm on 01/29/06 at 12:47:25, Lietuvos wrote:
sorry, but I find nothing humourous about it. We may not get clusters but we do feel pain too, trust me. |
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