My wife gets dragged down by my clusters. She feels knocked back each time I have a good morning and then the next day 3 steps backward into pain.

Like many CHrs I try to protect her against seeing me when I am being hit. I try to take it alone. This is how I want it.

Sometimes when I am tired and flagging I can't hide my dissappointments when I am being hit, especially when the day starts off really good and I think maybe the signs of end of cycle are there. only to be hit at a different time, in a different way.

She won't come on here. She doesn't use  forums and gentle persuasion by me hasn't had any effect.

Don't get me wrong she supports me. When she feels knocked down by it and I am the same it makes it doubly hard.

What can I say to her to help her. If I knew a simple way I would use it?

Elllick

Ellick, I've been supporting my dad since I was 7 so I understand completely. It's hard, for both of you. And she feels so helpless some times there's nothing that can be done to help her. But what you can do is tell her how much you apperciate her being there. Maybe let her see you getting hit. Let her hold your hand or something so she feels like she's making a difference. I'm not saying she doesn't already but just these little things might put her mind at ease a little more. CH is a scary beast for anyone, the worst thing is to be pushed away and told that "I can handle it alone." Even if you don't want us to see, we do. Even if you don't want us to blame ourselves for being "helpless", we do. The little things you tell us to do that help in the tiniest way are a way to stop that helpless feeling. Just my advice. Hope everything turns out.

Broken

Good Morning Ellick,

You suffers are amazing.  Your pain is horrid and yet so many of you are still concerned with how to help your loved ones endure.  A brave and compassionate lot you are.

My advice is to reassure her.  Make sure she understands that it is terrible but you can handle it and that it will be OK.  Try to have as normal a life as you can between hits.  If you let the beast take center stage he'll own you both.  When you have a terrible day tell her tomorrow will be better and that things WILL get back to the good times.

I really hope she doesn't feel guilty.  I always did.  It's guilt because we can't do anything to make it stop.  The guilt leads to helplessness and that sucks too.  When we love someone we want to make it better or fix it.  When we can't the inadequate feelings come.

You all have been down this road before (I take it this isn't your first cycle) and made it through.  You'll do it again.  This reassurance should help her.  CH scares supporters so talking of the good days to come should help.

Good Luck to you both,
Jackie

Hi Ellick.  You've already gotten some great advice from two of the best supporters that we have here.  I will second and third anything that they have told you.

I know that you said you prefer to be alone, but one thing that helped me is just like Felicia said let her hold your hand or hold you in her arms, or grab you an ice pack or energy drink, grab you the O2.  Small is that may seem it really does help us to feel like we are doing something to help.  When my hubby was still doing the Imitrex injections I would sometimes give him the injection.  Remember you guys are a team and any battle is easier to fight if you have someone you love right by your side.

You said that she doesn't come on here.  She doesn't have to join if she doesn't want to.  She can just come here and read the posts.  She's already a part of the CH family even if she doesn't want to post.  This site and reading what others have gone through really made me get a better understanding what my husband goes through.  Let me tell you something else, it's amazing the kind of love you get here.  I've been supported by other supporters and many sufferers and for that I will always be grateful.  I've made many life long friends here.

I know this might sound silly, but when Phil finally stopped hiding what was going on from me, I researched the web about CH (that's how I found Clusterville).  I would print things out and make notes to take to Phil's doctors appointments.  It made me feel involved, like I was really trying to make a difference.

I would encourage both of you to get together with other sufferers and supporters.  I do believe that the OUCH convention is coming up in July, watch the meetings and gatherings section for info to come.  We just came back from the gathering in St. Louis and it was a great time.  Don't let the pictures of us in all our craziness scare you off  ;)

Best of luck and if there's ever anything we can do to help either of you let us know.

Jen

If you are really intent on taking the hit alone, tell her so (in a gentle and loving manner - some time when you're not getting hit). But tell her at the same time that you need her to be within earshot in case you need her help. That way you get what you need (to be alone) and she gets what she needs (to feel as though she's helping, which she is).

Broken , Jackie,

Thankyou so much for the good advice.  (Broken, such good advice and put so well without judgement or pressure).

I was facing the wrong way. Thanks for turning me around.

Yes Jackie, I have had CH all my life. I can remember as far back to about 8 years old. Teens and twenties were not to bad. Long remissions. Been hiting me much harder since the mid eighties. Once or twice a year for about 30 years now. Diagnosed about 12 to 15 years ago.

A song for you both. Hope you like it.

I believe that the answer is nearer to us now and in no small part due to sites like this one.

Ellick. xx

Quote:

She won't come on here. She doesn't use  forums and gentle persuasion by me hasn't had any effect.

Just as us sufferers feel relieved to have someone to talk to about CH and the knowledge that we are not alone, I believe supporters need that too.  If she won't join in here to talk to other supporters...would she feel better to talk to someone one-on-one say, for instance in a phone call?  Just a thought.

Thanks Linda,

Think I will try and get to the OUCH convention this summer. I will certainly bear your advice in mind and suggest it.

Our household consists of 3 of us. My son who has Cerebral Palsey, my wife who has Lupus and me. As you can imagine we are not to be messed with and we all support one another. Sometimes and unusually we all get pissed off at the same time. Thats when the going is really hard.

I have heeded the advice and re thought how things work. I have spoken to my wife about how hard it is for her and included her in what is going on for me. She saw me a long time ago in a CH episode which was one of the worst and before diagnoses. So she has not been excluded. Sometimes I feel that to deal with high level pain I am best on my own so we have discussed her potential feelings of exclusion. She doesn't feel that but does feel helpless and fed up as to how long it goes on for. We will work on that and I do include her in all the ideas about treatment and effects. I also make an effort to tell her what is happening to me.

The addition to this from your advices is the inclusion of her involvement when I know that pain is on its way.

Best wishes to you all.

Ellick

Ellick - I've been a supporter of my husband's CH's for some 29 or so years now. The info shared on this site has really helped both of us understand the condition better.  Many of the folks have really made a difference in his life, therefore mine.

I recently became active posting on the board and went with him to St. Louis this year. That sealed the deal for me, seeing the care and support between fellow sufferers.

If your wife would ever just like to talk one on one to someone please PM me and I'll be glad to call her or just trade emails if she's more comfortable with that.

Wow, you guys aren't to be messed with!  You've already gotten great advice, I just wanted to say that's really cool of you.  Hope you can work it out with her.   [smiley=heart.gif]

Personally, I'm really glad Gary wants me there.  I feel helpless enough, but it means a lot to me that he trusts me enough (at least that's the way it feels) to be with him when he's getting hit.

We worked out a kind of sign language so he can let me know if he wants anything (cold water with ice, an ice pack, etc.) during the attack.

Just more food for thought.

Laurie

It really helps me that I am able to get on the board and look things up for my husband because he just doesn't have the time and isn't much of one for computers. Just telling him I saw where three other guys got hit the same time is helpful to him...he feels terrible that others are suffering too, but also doesn't feel like he's the only one in the world.

I can also see when an attack is getting started, before he ever says anything. It helps me that I can go and get his O2 tank, shoo the kids downstairs, turn out the lights, get his 1/2 Imitrex pill (he's one who needs a little extra something besides the oxygen), fill a bowl with icewater and get him a cold rag over his eyes. Then I can either sit with him or leave if he wants me to. But I feel like at least I am doing something, and I know my help makes a difference.

Hey...
What happens with my hubby is that once the cycle gets going he needs me to be his "executive assistant" if you will.   He needs someone to assist him in telling him everything is going to be alright.  I make him tea and do little things... sometimes yes he wants to be alone but I still check on him... If I wake up from sleep and notice he is missing I look for him and see if there is anything that he needs.  

What you need to do for your wife is assure her that she is doing enough.  Sometimes being the witness to all this is the most helpless feeling in the world.  Just peek out from that horrible cycle you live in and remember to live in between.  Together you can get through this even if you still insist on being alone... Let her in on the idea that you can do it... You are brave and you believe that this is a temporary situation...

Til the end, til we find a cure...

ree

QnHeartMM - Thanks for your offer, I really appreciate it. I will certainly tell her about it. I hope to get her to a meeting this year which I hope   will help us both.

Gary's Girl - I like the sign language idea. I guess I am better atputting my full focus into fighting it that I go into myself so a 'clean' gesture here and there might be really helpful.

jmc1106 - Julie does check on me but I usually have most of what I need at hand and I reassure her that I am ok when it's over.

Ree - I do peek out and try to live as normally as I can. I don't let it make me a prisoner and i talk to her about the research, ideas and how things are going in the cycle. She does feel helpless and we are working on that from the advices that I have had from this post.

Thankyou so much It is a privilege to be in such special people's company.

Take care and don't be a prisoner to it.

best wishes to you all,

Ellick

last week my wife had surgery so lately i've been paying it back. she needs my help now so it comes back around ;)

-johnny- wrote on May 11^th, 2009 at 9:59am:

last week my wife had surgery so lately i've been paying it back. she needs my help now so it comes back around ;)

hope you're wife is recovering well JoHnny. See you in St. Lou?

QnHeartMM wrote on May 14^th, 2009 at 7:19pm:

-johnny- wrote on May 11th, 2009 at 9:59am: last week my wife had surgery so lately i've been paying it back. she needs my help now so it comes back around ;) hope you're wife is recovering well JoHnny. See you in St. Lou?

i dunno. the only thing i got this week was a load to pittsburge. last week it was detroit. i'm not doing well :( i'll pray for it though. that helps

What can I say to her to help her. If I knew a simple way I would use it?

Elllick[/quote]

" I LOVE YOU"  (and mean it)

I know this is an old thread, but I've been thinking about Ellick's post a lot lately. 

It's been on my mind because my hubby has been in high cycle and just getting slammed lately.

What a ridiculous, insidious, counter-intuitive condition CH is . . . .!  I call myself a supporter and the best support I can give to my husband is to walk away from him while he's in pain.  How counter-intuitive is that?  It goes against every nurturing instinct I have.

I walk away and realize my teeth are clenched so hard it hurts my jaw, my fingernails are digging little half moon shapes into the palms of my hands, and I know if I watch him get hit one more time I'm going to run into the night screaming at the injustice of it all.

In calmer moments I remember that we're veterans at this and we know what to do and what will come and it will pass and it won't kill him and all those things we tell ourselves to get through the next moment, the next hour, the next night.  I remember that he has asked me to leave him alone when he gets hit.  I remember that we've had hundreds of pain free days, and I remember that he's strong enough to handle this.

I remember it all, and know it all intimately.  But the feelings of helplessness remain.  I guess that's our lot as supporters.  I'm not sure anything will ever take that away.

Pat....you said a mouthful, Sweetie.  It's tough all the way around.   :'(

Hope the Brewman is better soon.

Great post!   [smiley=hug.gif]

Mosaicwench wrote on Oct 13^th, 2009 at 1:22pm:

I remember that he has asked me to leave him alone when he gets hit.

That doesn't make me a bad person, does it? ;)

Brew wrote on Oct 13^th, 2009 at 7:54pm:

That doesn't make me a bad person, does it? ;)

Of course not, baby!

Hello. Sorry about your suffering. I have been a support to my husband for almost 5 years. The first time I saw him have an attack, I was freaked out plus had never heard  of cluster headaches. He gently explained everything to me. Then for a while I was always asking him what can I do to help and all that good stuff and was always rejected. It hurt at first but he gently and clearly explained that unfortunately there isn't one thing I could ever do to help while he has the pressure or a full on beast visit. He did say that he would ask me if he needs something. Now I know I just have to leave him alone when he is hurting. A few times he did ask me to hide his gun because he was under unbearable pain. And sometimes I light him a smoke or bring him a drink of water or soda(he sure wishes it could be booze, sadly we have never gotten drunk together...brings on the headaches to most I believe). Other times I am in a different room praying for him while crying, begging God to stop the pain.
I have made peace with the fact that I can't do anything but he knows I am there.

About the stress, I may have to agree. When my husband worries a lot or stresses, it seems to trigger more pressure than usual. So there I always try to relax him and keep him stress free.

Lots of love to you and your wife, stay strong, which clearly you are doing!

LOl...I just realized how much I pay attention (lol)! Sorry...this thread is from a while ago, sorry,I'm a "newb"...well maybe what I said will help others and what others said of course, no harm done!

No apology necessary! This thread has some awesome points, certainly no harm in bumping it back up! ;)

Joe

Thanks. I just hate it when I don't pay attention closely enough...My mother often called me a "happy butterfly"...being always totally outthere! lol

Hope everyone is having a magical day with no pain! love :)