Hi all,

Im a CH sufferer, not supporter.  My wife is a supporter of me, but I think she is getting fed up.  She would NEVER tell me this directly- but...

Each year my attacks get more frequent, and more painful.  Im up 3-4 times per night now, and she keeps getting woken up by the noise of the O2 tank.  She is someone who is VERY dependent on a lot of uninterrupted sleep.  Without it her days are gloomy and she is not usually in the best of moods.  

She does understand that getting up with 3 CH's per night is more disruptive, but she just keeps saying "oh, im sooo tired....".  I feel awful.   But at the same time im a little resentful- i know that sounds bad.  Im dealing with the lack of sleep as well as pain, and frustration, and depression.  I need her to be a solid anchor for me.  But as it is, i feel like i burden her so much with these things, between talking about them and waking her up with my night attacks.  And this morning i was in shock- she asked "are you praying about these?"  I said no, and she said "If a problem isnt big enough to pray about, it isnt really a problem".  I had no idea what to say- i felt she was insinuating these arent as bad as im making them out to be... but she has seen full blown kip10's occasionally in every cycle for the  last 6 years.

Any advice from you supporters?  I am trying to be very understanding of this impact on her, but I cant help but feel resentment when she complains of her uninterrupted sleep.  Perhaps im not being supportive myself...  needless to say ill move the O2 to another room and just get up and go there (H tank very very big!).  

Any input is appreciated- and thanks in advance.

Bill

Bill,

My wife is the same way. Certainly not her fault and I don't blame her.

I have a couple spots in our house that I go to to put on the mask and knock a hit down. She'll occasionally wake when get up but at least doesn't have to witness the whole experience which is disconcerting to most supporters.

As for the prayer... well, that's a tough one for me. I've always seen CH as a burden to bear and my prayers are usually for others that I see in situations worse than mine. That's not to say in the middle of a bad one I don't ask for a little help now and then. But, he doesn't give us more than we can bear and what knocks us down makes us stronger. It's the only way I can keep it in perspective.

Peace,

Scott

Sleep deprivation, I think, is one of the hardest things to deal with in cluster cycles.   Especially for you, the sufferer, but this is the one thing that sufferers and supporters share.  

Sleep deprivation makes us say and do odd things and maybe it was your wife's way of trying to steer you in a different direction?  There are a lot of people who do believe in the power of prayer and it could very well be that (because of lack of sleep), she's grasping for straws and tried to help you by suggesting this?  I dunno... maybe there wasn't enough tact in the suggestion but don't lose sight of the fact that you are sleep deprived too.  Maybe you're reading something into it that isn't there?  

I'm not trying to piss you off, please believe that.  My hubby and I made a deal a million years ago.  Nothing we say during a cluster cycle is to be taken seriously, to the heart.  Once we're a few months in to a cycle and the lack of sleep is catching up with us, if one of us says something that stings, we stop right them and make sure of the intended interpretation.  

Have you (both) tried Dramamine/Gravol before bed?  It isn't a cure but it can sometimes give both of you a night or two of sleep.  

And moving the O2 tank out of the bedroom is the best Christmas present you can give your wife, too.  I think you'll both be better off if she can get a few good nights of sleep.  I'm not sure about you but other clusterheads I know are actually able to survive on less sleep than non-clusterpeeps.  Even when Mike's not in cycle, he's not a good sleeper but I am and I really do suffer the next day if my sleep's been broken.  He, however, doesn't seem to feel it as much - maybe it's the difference in our hypothingamajiggies?

Anyway, food for thought.  Thanks for coming here to ask the question - it was very thoughtful of you.

Thanks for your responses- and Margi yes- its definitely possible im reading into it.  I feel like i am up all night and walking on eggshells all day... and the daytime part could definitely be *me*.  I think you are right, the best thing i can do is move my ass to the couch and let at least one of us get some good rest.

Thanks for the inputs!

Hi Bill,
      I'm sorry this is taking a toll on the whole family dealing with pain is hard enough. the effects on family life make it harder. I no longer live with a ch'er but have in the past.So first off do what you have to do to fight the beast and get out of pain.Now for the supporter part.
       Look up a beautiful post by our very own wise owl jackie its called a different kind of pain.Now I'm not sure if you have children but if you do you'll understand this perfectly.We are made with the need/want to be able to keep the ones we love safe and painfree.When we can't it takes a toll on us emotionally and breaks our hearts.I believe that this may be the cause of some of the problem.Plus I am one who needs her sleep but I believe (hope) that I never let Billy know I was not getting sleep.He was usually very quiet and I went to sleep after the hit.I tried to stay still so he didn't know I was awake.I never minded if i woke up when he was getting hit because it was beyond his control.
  I guess what I'm trying to say is she probably isn't mad at you she mad at the helplessness a supporter feels.Talk to her about moving the o2.then when your both a little rested you both need to talk & listen about how this is effecting both of you and how you both can work better as a team.If she's up anyway maybe she might like something to do to feel she is helping.Get ice, a drink or if its what you need just leave you alone.communicate and remember never let the beast win.Everyone handles the effects of CH differently that goes for both sufferers and supporters.
   Minnie

Bill,

I have been episodic for over 20 years and this may what we have done may hae been easier for me than for others as we have no children living at home.

Around 10 years ago, or 7 cycles we decided to use my daughters old bedroom as my cluster pad.  This was deciced for several reasons actually;
the noise of the O2 waking the wife @ all hours.

with the tanks in the other room, on a wakeup CH hit, I sometimes become disoriented and lose my balance, and have fallen into things.

I have the computer in here, but most of all I'm not keeping her awake.

It took some getting used to but now it works quite well. And when the cycle is over I go back to sleeping on my side of the bed. Most nights that is.  ;)    

,Don

bsic wrote on Dec 22^nd, 2008 at 10:44am:

I think you are right, the best thing i can do is move my ass to the couch and let at least one of us get some good rest.

I think that's a good solution.  

Liz is very good about it, and very understanding, but we came to an accommodation quite a few years ago.  When I get hit at night, I go to the living room to ride it out.  I'm not as noisy as I used to be, but it's still a horror show she doesn't need to witness.  

Besides--no reason she should be awake too.  There's really nothing she can do, except feel bad.

Best,

George

I just thank God that Gary doesn't want to be alone during his attacks, because being able to do anything - get ice water, a cold compress, an ice pack - whatever, makes me feel less helpless in what is an unbearable situation.  I agree with Minnie - I'm sure part of the problem is that feeling of helplessness.  It expresses itself in odd ways sometimes.

That said - it was on advice from this board to talk about how we were each feeling about what was going on when he wasn't getting hit and we were both in reasonable frames of minds that got us to that point.  We worked out signals for when he can't speak.  Seems like pretty basic advice - but I kept trying to talk to him when he was getting hit.  Seems like maybe you wait until she's gotten a good night's sleep to open up your chat.   [smiley=heart.gif]

Laurie

When you're having some PF time and she's had a good nights sleep, sit down and talk about it.  Also you could encourage her to come here and talk to us.  Before I found this site I really didn't have a clue as to what my husband was going through.  Knowledge is power and I'm sure if she understands a little bit more about what your going through it will help.

Also, I'm really lucky to be a very sound sleeper so I very seldom hear Phil slip out of bed at night.  Sometimes he just stays on the couch so he doesn't wake me.  I get a tad grouchy too if I don't get my sleep.

Bill, my heart goes out to both of you and I heartily second the suggestion that you introduce your wife to this site. Supporters need support too!! It's bad enough that we feel helpless, frustrated and yes - even angry, when there's nothing we can do to physically help our sufferers. There is no need to compound the problem by feeling isolated as well. Everyone here knows what your situation is - even if we don't understand it.

Please read Jackie's post up there in the top section of Supportes' Corner. It's called "Another Kind Of Pain". I know when I first read it my sense of being overwhelmed was reduced to a more managable perspective. I still go back and read it again when Brian's being hit. It gives a boost to my resolve to be stronger for him.

Your wife will be ever so welcome here - please encourage her to at least browse the site, and if she's feeling a bit shy about getting involved, she's more than welcome to PM me ander your profile.

Love & Blessings - and have a lovely PF Festive Season

Denny (SHOODABINANUN)

my wife usually sleeps on the couch anyways. when i'm in cycle i sleep in my bedroom with the windows open and i stack up a bunch of pillows to elevate my head. i keep all my artillery ready and easy to find. one cycle i used to sleep out out on the back porch in a pair of carhardt coveralls and a toboggan. i've also slept outside with one of those extreme cold army sleeping bags. this all sounds crazy but these are some of the things i've done to get sleep.

another thing you could do is get a job as an over the road truck driver and that would eliminate the wife all together. ::)

The hardest part for me to deal with was never my own pain.
It was the pain and the helplessness that I knew my wife had felt.

Even the most selfless supporters can get fed up as they have every right to do. We are not an easy tribe to deal with and many times knowing that one can't help a situation can be very draining.

The best advice that I can give you is to suck it up and make sure that SHE takes care of herself. Make sure that SHE is getting rest and having times to enjoy. WE can make that happen by having the right treatment plan and coping mechanisms to deal with not only the pain but the inevitable depression that finds so many of us when dealing with sleep deprivation.

This is not who we are.
This is a condition that we have.
So if you feel that you have to walk on eggshells it is most likely a product of not communicating with eachother.
Once WE come up with the right plan the WE are much more successful in every aspect of life.

Just my opinion and my experiences.

Hugs and Stay strong!

E

Hey thanks to all of you for your advice and input.   The night after I wrote my initial post on this thread that i got a complete night "off" from CH and got a solid, full nights sleep- completely recharged me.  Although the next night (last night) i was back to the 3 usual visits-but it still recharged me enough to have a clear head in all of this.  I got her a set of earplugs- she refused to have the O2 out in the living room because it wouldnt look good  ;D  The plugs are working great, and she is getting her rest.  She has been great and with a little rest, its amazing how our outlooks can change!

Y'all rock, really appreciate the advice!!  Happy holidays-

Bill

With a little modification (if you're handy), and a lovely cloth that matches the decor, they can make a great looking plant stand!   ;D

Laurie  

Garys_Girl wrote on Dec 24^th, 2008 at 5:19pm:

...they can make a great looking plant stand!

Put a nice lamp-shade on top and no-one will even realise it's there.

Alternatively, lay it flat so it simply appears to be part of the aquarium, or stick it right next to the front door with lots of hooks glued to the outside. Visitors will thank you for the hat and coat stand.

Make it part of the feature-wall and tell people it's a valued peice of visual/installation art you picked for a mere snip at $87,000.

If all else fails, give your dear wife my phone number.

I use e-tanks and I roll them in and out of a closet when needed - My wife doesn't like the tanks being seen by company (thinks it reminds her of old people.....) so I comply.