exactly sb 

Kenny wrote on Aug 28^th, 2007 at 11:53am:


Welcome Kenny!

I know all about going for walks or sitting on the porch crying when my dear is in cycle.  It's what we do.

As you know from reading here there is no cure.  But there is treatment and remission and help-aplenty.  I would encourage him to come here and read and digest and learn all he can.  Knowledge is power and can help during the darkest cycles.

My largest frustration, like yours, is not being able to help.  My clusterhead wants to be left alone and that's what I do.  It goes against everything in my nature to walk away from this beast but if that's what my dear wants, then that's what I'll do . . . thus the walks and the porch  .

I would also encourage you to have a frank discussion about his needs during an attack.  He may not want you near but "near-by."  Or he may like a massage or hot coffee or whatever.  Find out what he wants from you and how best to facilitate it - even if it means he wants you to take a walk.  At least you KNOW and can respond to this creepy beast who interrupts our lives.

Keep reading and don't be afraid to ask questions.  Someone here will always be by shortly to help.

Welcome to the family.

frozzy wrote on Oct 22^nd, 2007 at 3:34pm:



Hello Frozzy

I am sorry to hear that your husband is in cycle again and the usual meds are not working and that its getting you down.

I understand perfectly how you feel with what you typed up there because I felt exactly the same thing. My husband has CH and his last cycle was more than 8 months long. Many times I thought I couldnt take it anymore, but then somehow I carried on. CHers get pain in their heads, we get pain in our hearts. Both hurt like hell !

Ask him to join the Board and talk to others here, it will help him tremendously. Organise oxygen as quickly as possible. Go for the high flow rate, most starting at 12-15 L/min but some go as high as 25L/min. Apart from it working very well for most in aborting a hit, it also helps cool the face and head and has a calming effect.

Other things help too such as an energy drink slammed down quickly at first sign of a hit, ice cold wet towels applied to the neck and face or for some scalding hot shower can help too.

You can encourage him to drink as much water as possible during the cycle and at the start of the hit. Melatonin at night often helps warding off the night hits. Make sure he eats well, sleeps as much as he can, keeps fit and does suitable exercise. Encourage him to try relaxation techniques, keep the mind clear, focus on the now and here instead of fretting about the next hit.

Apart from meds that his doctor can prescribe, there are a lot of things that you and him can try and do to help make life just that much more bearable. Every little thing helps.

By the way, I am concerned that he has had CH for 10 years and the doctor doesnt know to prescribe him oxygen as yet. Maybe he/she is not that familiar with CH treatment. If the hits are bad, is he on a prednisone taper?  What meds has he tried ?

Keep yourself busy, keep doing the things you normally enjoy. Treat the hits as they come with whatever you have, oxygen, meds, ice, energy drink, strong coffee ...etc. Once they are gone concentrate back on life as normal as possible. You will see that 2-4 weeks will just fly past. Dont keep counting how much further he has got to go with this cycle, keep counting instead each day how many hugs and kisses and cuddles you have given him . They are what that count ! 

For yourself make sure you spend time on your own doing the things you like, get yourself some nice chocolate and some fresh flowers. Go for a walk and enjoy the scenery. Take deep breath and sing whenever you can.

If you feel like crying, my shoulder is always here and ready for you, just drop me an email or a PM 

Take care, God bless and painfree wishes to you both.

HUGS

I'm new to the whole supporter role, but my opinion on the matter is anything worth doing isn't easily done; and I know for a fact this is worth doing.

RabidClock wrote on Mar 12^th, 2008 at 7:46pm:



You are so right, welcome, we will be with you every step of the way.

So I haven't seen a whole lot of messages from actual supporters here...just CHeads that rave about theirs. It's been almost three years since the last comment on here, so I don't even know if anyone will read this.

Am I a bad supporter? 

When my partner is in a cycle (such as he's been for the past four weeks) I hurt just as much as he does, just in a different way. His pain is physical, but it eventually goes away and he's fresh-a-daisy; mine is emotional and it hangs around all the time.

I read an email he sent to my sister regarding our recent vacation. He said his headaches almost ruined our vacation. I laughed at the "almost." As far as I'm concerned it DID ruin our vacation. It was not relaxing. It was not fun. It was torture. I asked him if we could just skip it and stay home since he had just begun a cycle the week before. He insisted we still go. Oh, yay. Yep, lots of fun trapped on the Amtrak with him and his CH; trapped in the rental car with him and his CH; trapped in the hotel room with him and his CH. Lots of fun!!! I know I'm not supposed to say these things and have more sympathy for his pain, but what about my pain?

I will admit that when he gets a headache I roll my eyes and think, "Here we go again. When will this end?" So I set his things out for him, gather up the kids, and head out the door...if he doesn't stop us.

I admire the people that try to hide it from their families so that they don't have to watch. I wish my partner would take a page out of that book. Instead, mostly, he asks us not to leave the house because it makes him feel badly, but then he won't leave the room to suffer on his own. We all have to watch and suffer with him. Misery loves company, right?

I am tired of getting up with the kids in the morning only to find his clothes strewn about the house, his pills and empty Imitrex blister packs strewn all over the countertop, and nasty, used kleenex lying about the general area of the garbage can, but nothing actually making it in there.

I'm tired of making excuses to my friends and coworkers about why I can't go out for fun, or why I can't work for them when they're sick, or why I'm always so crabby lately. I'm tired of lying to people when they ask, "How was your vacation?" "Oh, fun," I say. LIES! But if I tell the truth, I'm just a Debbie Downer, bitching about my boyfriend's headaches. No one wants to hear about it. I can't talk to anyone but him about it and that just makes him feel bad.

The only thing he and I talk about anymore is his headaches. Correction: he talks, I listen and clean up after him. He's very messy when he has a CH, and that's understandable, but when the headache is over, pick up your damned mess. I basically just feel like a nurse-maid. I clean the house, take care of the kids, and make sure he feels good about himself.

When can I start feeling good about myself? I keep all my feelings to myself because I don't want to make him feel worse about his situation but I know I can't do this much longer. I'm tired not just emotionally but physically as well. I feel like a single parent but instead of just having the two kids, I have three. I don't feel like a loving spouse. I don't feel appreciated.

Any help out there? I'd like my family to remain in tact and in order for that to happen, I need some pointers from other supporters, not Clusterheads. Clusterheads are too caught up in themselves to know what it's like to watch this month after month.

Am I a bad supporter?   

Hi Jen.

Sorry you all are having such a rough time. 

I don't know you, Sweetie, so I can't say if you're a bad supporter or not.  My guess is that you are a worn out, beat down supporter.  We, as supporters, tend to suffer some of the same symptoms as our clusterheads.....frustration, exhaustion, depression, anger.  I have a feeling that may be where you are right now.  You're tired out and just want your life back.....so does he, I'm betting.

You need to take at least a few hours just for you.  Do something you enjoy...I don't care if it's a walk in the park or a bubble bath.  I'd suggest an appointment at the salon or a new outfit...  

Maybe your vent/post here will even help a little.

I've been a supporter for many years and it's not always easy.  It does get better though...just think of the good times before this cycle and know that each day you all will get that much closer to those better days.

Now....
demonh8r wrote on Mar 27^th, 2010 at 1:08pm:


I find this out of line and disrespectful to more than Jen.  There are many, many supporters on this site who are here daily doing what they can.  The fact that we don't feel your physical pain damned sure doesn't mean we don't suffer right along with you.  I see that you are a newbie and a young man so I'm not going to flog you....yet.

HOLY SH*T Jen...the anger in that post leaps off the page and SCREAMS...truly stunning. I hope it helped to get that out......



Posting on a clusterhead forum and telling clusterheads not to comment is like telling the sky not to be blue. We tend to be a herd of cats...good luck corralling us.

Not even categorizing and insulting an entire group of people based on experience with one will shut us up. For God's sake, have you read what's available here...from clusterheads and supporters alike? It has literally saved lives...and if I were you I would read, read, read, read, read, read......

It has been said that there is no pain known to man worse than a cluster hit...I don't believe that. Personally, FAR WORSE is the pain I feel when my loved ones and friends witness...knowing there is nothing they can do. It tears my guts out and gnaws at my soul...."too wrapped up in myself to know what it's like"? Not sure I could be accused of worse.....most times it's ALL I think of....

Is it really your intent to inflict pain for pain? Is THAT somehow going to make you feel better? Thinking no...thinking you are hurting bad...and knowing you are in the right place. The help is here for the asking
and there are others here, far wiser, who can offer the help you need....drop the anger and be open...please.

You have my prayers....

Jon

Jen, you asked

Because you hurt when he hurts, it says you care, you love, you feel. A bad supporter would feel nothing, would care not. I know CH is relentless and evil and hurtful and agonizing, and some people just don't "get it". But if you love him, keep feeling, keep loving and keep caring. Yes it is hard, but it makes you human and a good person, and gives you a "golden pass" in the next life.

I sit hear reading, with tears running down my face. I'm right with you with the frustrations and fear of this THING that has changed my life. But bigger than the THING is my love for my husband. He is a good man, that doesn't deserve CH. Yes he is a PITA (pain in the ass), and yes he is terrible with $ and doesn't do things exactly as I do. But he is a good man, and adores me, and would give his life for me as I would for him.

I believe that love for your partner is still in you too, that is why you have stuck by for so long. It's ok to say "what about me?" Talk to people when you can. Their empathy and sympathy does remove some of the edge. There are many out there 10 times worse off. I read Eckhart Tolle's books during a past "dark period" in my life and he helped break it down to one simple message for me. Live my life in the moment with positive, forward movement. Let go of my ego and the negative and figure out why I am here.

I've never been in the military service, a nurse or a mother. Being a CH supporter gives me the credentials to say I've enlisted in all 3 careers. Being a CH supporter tells my why I am here. Being a supporter is a selfless act, and shows me how I can give back and love and learn to do for others. It is my test. Believe me when I say, I'm NO angel. I tremble at the thought that this could be "the rest of our lives." It makes me sad and then mad. And I find the good in the day, moment, minute and live. Keep living Jen, keep giving. Find a moment for yourself, give to yourself, and live.

Here for you as I know you are for me.

dsw...

Wow!  Beautiful post....on a lot of levels.

Big hugs,
Jackie

Another OUTSTANDING post on this thread, Carolyn.

Bravo Carolyn, right back at you!
diane