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Topic: How to continue on (Read 1614 times) |
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joelin
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My hubby has been suffereing now for only about two years, to many out there we are still probably babies at this. We have five kids, one is autistic and requires much therapy and time. My dear hubby works ten hour shifts. He leaves at 1:30 in the afternoon and returns from work about 2:30 in the morning. He is gone when the kids come home and is asleep "finally" when they leave. He doesn't see them during the week. We also live out in the country where we have to haul water weekly. Our house is literally falling apart, and as far as a "married life" there isn't one left. He wakes up at 3 ish and has the CH takes his stadol nose spray gets good and stoned for about thirty minutes then can't go back to sleep for an hour or so. When he does it is awake in an hour or so just to start all over again. THEN low and behold he can sleep right when I need his help the most and I can't in right conscience wake him up. I know he is incredible pain, but I can't con't carrying on all the burden of raising the five kids, going thru the rigors of autism, scared to no end that he is going to stroke out, die, or something. Plus have no time as far as a marriage nor family. These things are taking over his life totally, and now it has taken him away from us his kids and me. I can only do so much, but when I've got a stimming child, an attituding teenager x2, sports to get kids to, homework to do, etc,etc, and worring if he is even going to make it home the hour and a half drive because he falls asleep at the wheel due to sleep deprevation just to wake himself up with the headache "at the wheel" and find himself heading for another car. I am finding it hard to keep it together.
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Ree
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Re: How to continue on
« Reply #1 on: Aug 20th, 2002, 2:37am » |
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Whooooa Nelly!!!! You definately have to face your problems one at a time... Get your priorities in line... ie: If your autistic child comes first ... then so be it... etc etc. Sit down and write it all down... sounds like you could use some Calgon honey and a great big hug. Well here is your hug from Ree at CH.com and I hate to say it but I have been there... I had a new baby by C section and pneumonia and Dave's cycle comes... do you think i got any of the proper rest and recooperation. It seems thats how the CH life is and WE the family always take a back seat to the BEAST that CH is... Do you have any family, friends???? If they dont understand Cluster Headaches bring them to this website and sit them down in front of the puter with a cold one... when they start to get it say "I NEED HELP"
Where do you live??? You have to get your head on straight in order to help yourself and your family... Teen agers too. I would like to help you (support you) If you need to email me do so my email is Ree16angel@aol.com put CH.com in the subject line so I open it as I dont open mail from people I dont know... Good Luck and keep coming back... get some peace of mind and probably some better ideas for your hubby... take care you will be in my prayers tonight... (((Im having trouble getting to sleep tonight)))) ~~~Ree~~~
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Ted
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Re: How to continue on
« Reply #2 on: Aug 20th, 2002, 2:29pm » |
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Great response Ree.
Joelin. You've got a lot going on for you and you need some help getting it all done. that's too much of a burden for one person. I'd say CH or not, your husband needs to pitch in too.
I guess the only advice I really have for you is to listen to Ree. She's pretty smart and not as dumb as I look.
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| « Last Edit: Aug 20th, 2002, 2:30pm by Ted » |
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Ree
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Re: How to continue on
« Reply #3 on: Aug 20th, 2002, 3:02pm » |
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You've never looked dumb to me Ted quite the contrary...
waiting to hear from you Joelin .... hope today is better than yesterday... Ree
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joelin
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Hi, Thank you for your responses. I wish I could smile and say today was just great! Nope, he had no sleep again last night, when he got up the final time, he stayed up and found that the animals had gotten under the house (dogs) and tore out all the underpinning (modular home), and our eldest daughter with 102 fever. I'd been up pretty much the night with him, and her. After fixing what needed fixing, he was getting ready for work when bam... it hit so hard. He hit his knees screaming. He didn't want to take his stadol because it makes him so doped up that he can't function and he had to drive 1 1/2 hrs. to work and fix machinery. So he endured, paced, screamed, beat, and just about broke what we had just fixed. Tried to talk with the kids, not much good. Also, we went to Florida in July, and came home to find that his mom had tried to kill herself. We put her in the hospital, and found she had cancer. She died last week two weeks after we found out. He is an only child and no father. So that just adds to his burdens.
I know we all are carrying such heavy burdens, last night was just the straw waiting to break the back. Everyone asks how he's doing, I usually reply "I'm making sure he's doing the best possible." but noone thinks to ask me. I've talked to my family about what's been going on, but they just blow it off and have not been there for our autistic son so it didn't surprise me that they won't help with him. They just blow it off as a "headache". "How bad can that be, just take an asprin and go back to bed". Sometimes I want to just tape him and show the doctors and everybody our life. Don't know if it would do any good though.
Enough whinning for me, I'm out of cheese 
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Margi
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Re: How to continue on
« Reply #5 on: Aug 20th, 2002, 7:00pm » |
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Joelin, I just gotta jump in on this one.
Two big messages jumped out at me from your post.
1. You and hubby are WAY sleep deprived. We can help you with that...see below.
2. YOU, lady, have some homework to do. We hereby assign you one timeout a day for the duration of this cluster cycle. I'm deadly serious about this, Joelin. You know about when hubby is going to get hit and you know when his attacks finish. Get your older kids to watch out for your little one and SCHEDULE a hot bath for yourself, when he's not having an attack. Lock the door, light a coupla candles and SIT in there for at LEAST 30 minutes. I know this sounds assanine, but it's really not. You need to recentre yourself and recharge your batteries. If you don't have a bathtub...a hot shower will do the same. Drain the hot water tank if you have to but MAKE this time for yourself. Take yourself on a mental vacation. Do NOT let yourself think about ANYTHING going on in your day to day life right now. Just take a break for 30 short minutes. The trickle down effect can last for hours...Picture yourself on a beach in Maui.... dreamin is FREE, honey. And VERY therapeutic. OK? Promise you'll try? We WILL check ya know... 
Now, sleep deprivation. Go to the store and get yourself some Dramamine - they sell it generically as Travel Tabs, I would think. This produces sleep as a side effect for your hubby. It doesn't let him get into REM sleep, which is when most nighttime clusters hit. It won't work for more than a few days in a row, and it may not work at all, but it's sure worth a shot. And it's inexpensive and available without a prescription.
As for yourself? I doubt you need any sleep aids at this point, you're probably able to sleep standing up by now, right?  But if you both can get just ONE night of sleep amidst the madness, it's completely GOLDEN at this point. Please try this?
Very sorry to hear about the loss of your mother-in-law. I'm an only child of a single mom too. Man, he must be going through some horrific emotional pain right now, on top of the physical stuff. Give him a hug from me, only child to only child.
And, finally - tell us what meds he's on? Oxygen is a popular abortive here to prevent the attacks and folks here use welders oxygen safely, when they can't get a prescription for medicinal stuff. Is he seeing a doctor? We have lists of recommended doctors by state over at the OUCH website. Sadly, very few docs are well educated with clusters, but the ones listed there are recommended by folks here.
See? There's always light at the end of the tunnel and it isn't necessarily always a train. You found US, didn't ya?
Big hugs,
and p.s. Visit us at the Family Services Team - we're a group of supporters with a few tricks up our sleeve. We're over at the OUCH website, in the pulldown menus above the map.
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| « Last Edit: Aug 20th, 2002, 7:04pm by Margi » |
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joelin
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Your help has helped. He hit me with another issue today. He says he's been having "intimate" dreams at night when he finally gets back to sleep, but he's always with someone else.
He blames it on the stadol nasal spray he takes, but I've been searching, and can't find anywhere that this is a "sideeffect". I'm trying to support him, but this is a major blow.
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Margi
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Re: How to continue on
« Reply #7 on: Aug 21st, 2002, 9:28pm » |
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aw c'mon. you can't be serious? what man in their right mind would ever ADMIT to that?
trust me, it ain't the Stadol, honey. man, oh man. i can throw away my glasses. i've seen everything.
wait.....Hub, is that you?
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| « Last Edit: Aug 21st, 2002, 9:32pm by Margi » |
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paul_b
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Re: How to continue on
« Reply #8 on: Aug 21st, 2002, 10:29pm » |
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Intimate dreams with someone other than spouse is not strange but talking to your spouse about it? Why? What triggered the sharing?
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joelin
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 This is how it went, He came to me and asked me to call the doctor to see about getting a lower dosage on his stadol inhaler. I asked him why. He told me because he's been having these wierd dreams. I chuckled and said, how bad can they be. He said well.... So I said "as long as they aren't about you having sex with someone else". That's when he said, actually yes some are. I don't mean to hurt you, but I am. He then got his lunch bucket and headed out to work. When he called me this evening from work, I asked him if he was kidding. He said he wasn't and that he "didn't know where they were coming from". So I asked him who it was and he said he didn't know but he could describe her. I found it very fishy, almost like he was leading up to telling me something, but he just kept saying it was the stadol and that he didn't know where they were coming from.
I to was incredibly shocked. I had never heard of any male telling his wife of dreams like this, but yet I was naive enough to think they didn't dream about other women either. So it was the straw that has broken the back. I told him I didn't know if I could believe him anymore. It was tooo fishy for me. He said it was the headaches and the medicine. Now I'm no goody two shoes and have done a hit or two of something in my younger days. I've never had dreams or anything like that about that subject.
So I was just wondering if anyone else's hubby had dreams that were really wacked or not so wacked when they used stadol? I'm trying to believe him, but dont' want to be played the fool.
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Ree
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Re: How to continue on
« Reply #10 on: Aug 22nd, 2002, 12:35am » |
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You are not naive... but I'd hit him with the frying pan next time he gets a CH... or take a few hits of that stuff and have yourself a dream about someone else... doesnt it burn your butt the things the men we marry have to say sometimes... Like they think they are so indispensable... Every 10 years I think all women should yell ROTATE and get a new MAN!!!!
Don't be so gullable and tell him you are hurt by his honesty... How can you dream about someone you have never seen before???? I dont get it... thanks for posting... keep coming YOU NEED US!!!!!!! love ya (youre in my prayers) Ree
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| « Last Edit: Aug 22nd, 2002, 12:37am by Ree » |
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Ted
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Re: How to continue on
« Reply #11 on: Aug 22nd, 2002, 12:37am » |
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Here's your answer. Do what Margi said but fuck that part of waiting till he's not hurting. Do it all now and whenever you can.
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smartie
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Have you no help with the family?
If not you need it, you cannot possibly cope with no sleep, also I think your hubby needs to know the effect all this is having on you.
As far as outsiders go, standard answers are the second worse thing next to no sleep, I'm sick and tired of having to explain the no cause, no cure etc etc, I've now printed a page from this site and show it to EVERYONE!!!!!!
Goto go for now sleepy baby on knee, back is dying
Put yourself first or you will crumble
Hope YOU get some relief soon
Lots of love & luck to you
Take care
Helen
(& little H on knee zzzzzzzzzz)
xxxxxxxx
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Ree
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Re: How to continue on
« Reply #13 on: Aug 24th, 2002, 3:23pm » |
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I keep yelling ROTATE but Dave is still here??????
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Inoscynt_Knight
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To play devil's advocate: (but am dead serious)
I dream about people I don't know all the time in my dreams. And sometimes in sexual situations. It's not always the same person either. Sometimes it's a man and sometimes a woman. So it's not as if I am thinking of a dream mate before I go to sleep. It's all subconscious. In my opinion, that is normal (but realize I have a chemical imbalance as I am bipolar) so drugs which affect the mind can probably cause similar things to happen.
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Ree
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Re: How to continue on
« Reply #15 on: Aug 27th, 2002, 12:29am » |
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OK but you wouldnt start your day telling your partner that you dreamt of another person the night before... thats kinda unfair... unnecessary and unbelievable... keep it to yourself... Im with you what is in the subconsious is subconsious but its also my personal business... not something you can unsay once it is said... Ree
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Candy
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Hi all!
Joelin, I hope you've managed to catch some dreams of your own since your last post. Margi's absolutely right - make YOU time.
As to telling you about these dreams, I have to assume that with all you're coping with, you're looking 'sex' up in the dictionary to remember what it's all about. Maybe it's a way of letting you both know that despite, despite, despite, there's still a normal, healthy person in there somewhere. Maybe he's dreaming what there's no time for. With someone else...maybe since he knows you have no time for breathing, let alone sex, he's subconsciously 'giving you a break'. Sharing these nightly ventures with you? Maybe it's as simple as letting you know that he misses you, but he can't quite say that, or hasn't got it figured out himself yet. It could all also be just a matter of release. With all that's going on in your lives, perhaps it's just the lower levels of his mind giving him a mini-vacation. Maybe since it's impossible for you to stretch yourself any further than you already are, his mind is giving him that little bit of extra TLC he may need now.
There are hundreds of possibilites...dreams are strange territory. My hubby tells me of similar things all the time, but I know he's just sharing his personal stuff..not planning to enact it. Bottom line? There's more than enough shit for you to handle in your waking lives...don't stress yourself over games his mind is playing in his sleep.
I know I had lots of 'maybes' and half-thoughts here. Hope it made some sense. Anyone care to add or expand?
Put one foot in front of the other, Joelin, and take one step at a time. I'll be thinking of you!
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Becca
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Re: How to continue on
« Reply #17 on: Aug 28th, 2002, 6:34pm » |
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Candy's reply makes a LOT of sense. Dreams can't always be taken at face value, I think. It's a subject I've been reading about some, lately, and a most confusing one.
There about as many theories as theorists, but most seem to agree that dreams are rife with symbolism. Here is an excerpt from Our Dreaming Mind by Dr. Robert L.Van De Castle, (from chapter overview of dream theorists) :
" ...With regard to theory, none of the authors reviewed in this chapter accept Freud's notion that dreams act as the gaurdian of sleep, or that they serve to discharge instinctual tensions.........most theorists emphasize interpersonal concerns and social relationships. The role of sexuality in dreams is not central for any of these theorists and, when considered, is not viewed in terms of the discharge of drives so much as in terms of the interpersonal context which facilitates its expression or inhibition.
So what does that mean? Who knows? - Could it be that in a dream a sexual encounter is symbolic for exposure of one's most intimate self, perhaps to someone not entirely trusted? Also, many dreams are thought to be triggered by sensory stimuli to the sleeper. Wearing a new perfume recently? New bath Oil?
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Ree
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Re: How to continue on
« Reply #18 on: Aug 29th, 2002, 9:55pm » |
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Candy you are so sweet... and so logical... wise words ya got there... We veterans are so quick to judge... and alot of the time skeptical... You have reminded me of someone, my closest dearest, bestest friend Sue who always finds the good in any tale that she is told... We need you around here... thanks for your input... Im sure joelin if she is still around is appreciating what you said too... take care Ree ps hope hubby is PF... havent heard from you lately...
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Candy
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Hi everyone! Thought I should post a general note just to say that I think of you all much more often than I actually show up here. I mentioned in my first post that I was new to the 'net, and to be honest, I suffered a bout of information overload. Which is to say, my house was a write-off and my entire family was pissed at me, but hey! I learned to surf! Anyway, with so many pots on the stove, I had to turn down the heat a little under each of them. I think I'm getting a grip now though, and with school back in, I should be able to work out a schedule of sorts so that I can be here to try to help more often.
Has anyone heard from Joelin through IM or anything? I'm really concerned. Went through a period myself a few years back when I found myself looking up and saying, "Okay, whatever else you've got, you might as well throw it now." I really got to a point where it seemed almost funny - that so many horrid things could slam me at once. Thing is, I remember too well driving along the highway thinking how easy it would be to just let go of the wheel, standing in front of the medicine cabinet suddenly realizing that I was wondering about its contents...I knew I'd never act on it, if only because of the effect on loved ones, but it was pretty damn unsettling. I'd never had a suicidal thought in my life, despite some pretty rough times. It passed, things got better like they always do, but it really makes me wonder where Joelin is now. If you're still checking in without posting, hon, just a little line to let us know you're okay would be great.
What else?...Becca, Have you read Sylvia Browne's new book on dreams? I'm just starting it now, but it looks like it may have some interesting ideas. I find that when I start analyzing my own, I just know when I've got it right, no matter what the experts say. Feel it subconsciously, I suppose, from whence it came.
And Ree, what can I say? I do try to see the good in everyone, but it's a selfish thing...I have to believe that each one of us has a valid, unique purpose in being here. That we each have a path to follow that includes a variety of experiences of thought and feeling. Ted posted a quote by Emmet...damn, Emmet something...in another thread that was much more eloquent, but the basic idea was that all that comes our way is an opportunity to learn. I believe strongly in this, and I think it includes people as well as situations. Mind you, I also believe there are exceptions. (Think Charles Manson, Paul Bernardo, etc.) It can also be a handicap...I end up hurt sometimes because I refuse to accept that someone is 95% not a very nice person. And it can be tiring...something like being a supporter, actually. Does your Sue ever want to scream, "Can someone else be the optimist for a while, because everything sucks!!!"? I falter on a regular basis...but I work hard at giving myself the same opposing view that I'd offer anyone else. Still, I'm sure my alter ego will show up here sooner or later, and now you've all been warned!
I think I've rambled on more than enough here...hope you aren't all bored silly. Thanks to both of you, Becca and Ree, for the backup on my previous post. It's good to know there are others who remember what common sense is for. I really think that a lot of society's problems today come from a severe lack of use of that old-fashioned tool...but that's a whole new topic, and I'd better get out of here before I decide to like it too much!!
Oh, and the hubby's doing fine, thanks for asking...just wish a lot of others around here were lucky enough to have his long remission. "This too shall end." And so shall this post! Good thoughts and warm fuzzies to all!
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joelin
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Hi, I'm still alive.
I look up yes, but not to ask what else, I look up and say HELP. Have been going every few weeks with one night sleep for him. He was trying to push thru a shadow coming home from work, and the engine on the van cracked a head. UGH. Add more onto the fire. I'd have to say that I'm not doing much supporting, mainly surviving. I don't know what is worse, the headaches, or the aftermath of the headache/medicine. He can pull it together enough to get to work, but not for home life. We went to a hotel to finally get away, and he slept all evening, went to eat when I finally got him awake, and then he took something to help him sleep and slept all night and the next entire morning. Nice sleep for HIM at $150. a pop. BORING for me, I wanted to go siteseeing, go dancing, to the movies, something. Out to eat, then back to sleep. HUMMMMMMM.
I echo the statement "let someone else be positive for awhile". I say also "where is my support when I'm sick, hurt, etc. and he's to tired or a walking medical idiot to support me". I've thought about leaving him, and taking the kids. At least to somewhere that isn't so hard to live at. No hauling water, no beggng for rides because he locked up the engine, no totally disregarding my life so I can take care of him like another child. I know he didn't do this himself, but right now, I'm faltering and trying to hold on. I'm tired of holding on, I want to LIVE for once.
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Margi
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Re: How to continue on
« Reply #21 on: Sep 9th, 2002, 9:46am » |
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You know what, Joelin? Sometimes we, as supporters, just have to suck it up. And put ourselves in our sufferer's shoes. Yes, we get frustrated and sleep deprived but think what THEY go through. The fact that your hubby even agreed to GO to a hotel to have a night out in the middle of a cycle is pretty wonderful all in itself. The fact that he was ABLE to sleep at all is golden.
I know you feel like you've had enough, we all reach that point, that's why i suggested to you early on to make some time for yourself - don't rely on hubby to entertain you right now. Boredom in marriage, frustration and selfishness need to be shelved while a cluster cycle is in progress. It's just not fair to judge someone when they are going through that horrific pain and all that comes with it.
I'm sorry if this comes off harsh, but your post just hit me the wrong way, I guess.
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And, on the Eighth Day...God created Beer (to stop the Canadians from taking over the world)
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IMHO (which in my universe is correct)
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Ted
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Re: How to continue on
« Reply #22 on: Sep 9th, 2002, 12:05pm » |
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on Sep 9th, 2002, 7:21am, joelin wrote:Hi, I'm still alive.
I look up yes, but not to ask what else, I look up and say HELP. |
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I don't know. I think this sentence says it all. There's a supporter out there who's reaching the end of her rope. She even sometimes considers packing up the kids and moving on. She didn't say she packed it up and moved away. She just considers it, which I'd imagine many supporters do from time to time. And she's coming here asking for help and to release some of her frustrations as well. I don't think she needs to "grow up," as ECC posted to her to do. She's been getting great advice as well as perspectives in this thread that she may not have considered. But she's asking for help and not asking to start a movement to get all supporters to leave their spouses. Most people would have just called it quits and not reached out seeking help. She hasn't but came here instead, maybe hoping to defuse those feelings. Hell. Most spouses wouldn't have even sought out this site.
Good for you, Joelin, on your posts and for coming here.
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| « Last Edit: Sep 9th, 2002, 2:19pm by Ted » |
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Margi
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Re: How to continue on
« Reply #23 on: Sep 9th, 2002, 12:36pm » |
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Joelin,
could you answer some of our questions for us in this thread? tell us what meds he's on, etc. have you tried the Dramamine....have you TRIED to get some time for yourself? have you taken any of the suggestions that have been offered to you here? we can only help you if you give us a little feedback, rather than you just posting how clusters are affecting your social life, or lack thereof.
Supporters can so easily fall into the 'poor me' trap - but I'm living proof that that is the worst thing we can do. For ourselves AND our sufferers. Attitude is everything and we have lots of stuff in our arsenal to help you work on that.
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Ree
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Re: How to continue on
« Reply #24 on: Sep 9th, 2002, 6:24pm » |
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I agree with Margi you have to get tough... do you love the guy or want to throw in the towel... This is what the vows meant when they said "For better for worse for richer for poorer" there are no guarantees in life and especially in marriage. God knows I've had my rough times... You need to get tough for your kids and for yourself and for your hubby... get him a plan he needs :
1) a Neuro that knows CH
2) a preventative that keeps them away(sometimes)
Neurontin, Depakote, Verapamil etcetc...
3) an abortive ie: imatrex, zomig, amerge, maxalt etc
any of the above and 02 or just 02...
There are alternative methods that I dont know anything about but you can get the information in the archives...
Maybe you need some time away with your children... dont expect him to watch them when he is like this... I feel like you are losing respect for him and that is really bad... and not fair during a cluster cycle... I have learned respect by watching my husband suffer... though it reduces him to an ant size creature from a big muscular guy... Withstanding that pain takes the purple heart as far as I am concerned...
Glad you vented here. If you come back more often then your story wont sound so rare... We understand we really do, but having been veterans in this war against Clusters were not letting it get us down... dont you either... peace Ree
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| « Last Edit: Sep 9th, 2002, 6:32pm by Ree » |
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