Well that is my kids perception of me since I started getting CH . My wife tels me that ever since it started I've lost my easy going attitude and I'm now grumpy most of the time , and I don't have time for the kids.

I was devastated , I had no idea, I don't want my kids childhood memories of me to be "Angry dad " let alone be Mr grumpy to my wife.

Don't get me wrong here she fully understands and I'm glad she told me about how it's effecting them ...........she's wonderful (although she would never admit it) and I need to be aware and do some thing about it .

I know this is going to be a chicken and egg thing but she raised a good question ,  Is it the fact that I'm in pain all the time( although I'm out of cycle I still get shadows all the time , mostly minimal pain but some are still ordinary headache bad ) or has having CH alterd my brain chemistry so to speak ?

Any thoughts

Nigel

Altered your brain chemistry? I highly doubt it. made you on edge and grumpy because you hurt all the time? Yeah......pretty good chance.

But just to play the devil's advocate a little.......kids aren't beyond messing with you a little. A friend of ours called almost in tears because her 6 year old daughter told her, "all you ever do is say no!" We told her...that's kind of a parents job....it makes us highly unpopular at times.

Dont beat yourself up too much, parenting is hard. I suspect there will be no huge counseling bills in 20 years to worry about. ;) Just take it as one of those gentle reminders we get now and then.

Joe

Thanks Joe , it's just tough to hear when all I want to do is give my kids a good and happy up bringing.

It's been particularly hard on my son because he has aspergers sorry he has anxiety problems and he is hypersensitive ( long story cut short NHS wont diagnose any ASD unless it really bad cos it costs them too much money ) but now I've been made aware ,hopefully I can do something about it .

may be it's a little of that horrible self pity stuff creeping in ( got to knock that on the head )

God bless

Nigel

Kids' attention spans are about as long as your pinky nail. Hug 'em, kiss 'em, tell 'em you love 'em. And maybe make a little more effort not to let your personal hell affect them. Sometimes we need to compensate a little.

Once they get a little older, they'll reach the age of reason where true empathy starts to develop. Then they'll understand a little better why dad is a little on edge. As long as you reiterate to them that they're not the cause of it.

My kids came out all right throughout all of this. Now they're adults and don't even remember "angry dad".  They also understand a little better of what they witnessed in their younger years ;)

Good point ,thanks Brew

Thanks Art

My son has known no time when dad didn't have these terrible headaches. Dare I say it has helped make him one of the most caring, compassionate human beings on earth (right after his mother)?

There are silver linings to this black cloud that hangs over us.

I'll second what Brew said (cuz his son is my son, too!).

Being an only child, JrBrew (or Micro-brew  ;)) can be pretty self centered. 

Being the son of a clusterhead has taught him that the self-centered business doesn't cut it.  There are a lot of clusterheads here who have met him and know him to be compassionate and empathetic to their plight.  He even plays Chuck's horrific getting-hit video for his friends and tells them about CH so if they ever see his dad in that state, not to worry, we have it covered. 

There were plenty of times when we had to leave a movie, or a game, or an event due to dad getting hit and there were indeed outbursts from young son about "unfairness."  What kid doesn't think it's unfair that his needs don't come first?  It's just part of life's lessons, and watching a parent (or any loved one) struggle with chronic pain is a valuable, valuable lesson.

Maybe the cosmos afflicted Brew with this evil beast for a greater purpose than to watch him writhe in pain . . . . .just a thought. 

I think at the moment I am may be a little apprehensive too because it's coming up on the time this all kicked off last year so I'm kinda bracing my self for the 2010 tore of the beast... of course I have no idea how this thing is going to pan out for me ,it may not come back this year ( please please please) but I kinda think it will.

any how I have 12 Imitrex shots in the cupboard and a good GP so I'm kinda ready.

Thank You all for your responses and your reassurance

God bless you all

Nigel

Brew wrote on Aug 21^st, 2010 at 8:46pm:

Kids' attention spans are about as long as your pinky nail. Hug 'em, kiss 'em, tell 'em you love 'em. And maybe make a little more effort not to let your personal hell affect them. Sometimes we need to compensate a little.

lol!  Great advice!
And I love the title/name "micro-brew" Excellent!

And, really Nigel, your kids are clothed, fed, hugged, supported, etc.  I know lots of kids who have had a lot less and have done just fine...  Hug them, kiss them, give them a bit extra positive attention when you are having a good day.  We're parents - it's in the job description to worry - but, they're going to be OK...
:)

Quote:

Kids' attention spans are about as long as your pinky nail. Hug 'em, kiss 'em, tell 'em you love 'em. And maybe make a little more effort not to let your personal hell affect them. Sometimes we need to compensate a little. Once they get a little older, they'll reach the age of reason where true empathy starts to develop. Then they'll understand a little better why dad is a little on edge. As long as you reiterate to them that they're not the cause of it.

To quote Jack Nicholson in the movie "The shinning..."words of wisdom Lloyd.  Words of wisdom"

Ok Linda  . Now there was an angry dad  :)

Dealing with CH is a little like dealing with a death in the family.  You go through stages, denial (not a river), Anger (yes the "Shining" does come to mind), and despair/depression (can be as deep and wide as the ocean).

The importance of talking to your family and having them talk back can't be stressed enough.

Nigel using the death analogy may help your family understand a bit better what you are going through and just how devastating dealing with CH can be.

Don't let the beast kick you or your families ass, fight back.  We have your back here!

PF Wishes!
Ging...

Thank dude

God bless

Nigel

Headache Boy uk wrote on Aug 21^st, 2010 at 11:25pm:

Thank dude God bless Nigel

:-? Dude?     ;D ;D ;D

sorry I tend to use it just as a turn of frase , how about dudess?  8-)

;D  Much better  ;D

You are quite welcome btw  ;)

In our family, the correct, gender based form of dude in relating to the fairer sex is "dudette!" ;D

Joe

Guiseppi wrote on Aug 22^nd, 2010 at 9:55am:

In our family, the correct, gender based form of dude in relating to the fairer sex is "dudette!" ;D Joe

Mine too, but didn't want to split to many hairs  ;D

I remember my girls getting upset when Joe was in cycle and commenting what an "AH" is can be etc. What the girls and I repeat to each other now is, "it's the headache talking". I think we got that off of a Grey's Anatomy episosde. At any rate, there is no denying that when Guiseppi is sleep deprived and under the influence of his CH treatment meds that he can be a little "edgy" if not down right "cranky". But I also know how much he loves us and I can see how hard he tries not to be a "AH" even though he's suffering.

Once the girls were old enough to really understand his condition and treatment they actually joined in on "can I get you some ice Dad?" or to now bringing him the red bull when we see "Olivia" the O2 tank come out of her hiding place.

Hang in there Nigel. Maybe you can so something special for the kids while you tell them you love them, and thank them for their support when you hurt.

Hugs.

Nigel, wake up you're ruining your kids lives...Just kidding. Mine are now 25, 23, and 21, and are my best friends. (I'm divorced recently so Mom's not anymore). But if I had a nickel for every time my kids laid a guilt trip on me about too much time at work, or at my desk when at home or when I was out for a day with Migraines back then, I'd be a wealthy man. Do try to find some time when you are feeling the best you can and laugh with them, but in the meantime, they are resilient and will love you for who you are, when you had the CH pain, and AFTER YOU BEAT THE BEAST, as well. Don't forget that's the goal. Good luck and just for caring, you're a great Dad.

Nigel,
Everyone has spoken the truth here.  My daughter is 26 and there was a time (when she was about 3 or so) that I was working split shifts and she was at home with daddy.  He remembers her taking care of him, she has absolutely no memory of that time.  She also doesn't remember the *bad* times (except in a few instances where I had to take Jimbo to the emergency room and she got to stay with the neighbors).

Kids are resilient.  If they weren't, they'd come with better instruction booklets.

Carolyn

If they weren't, they'd come with better instruction booklets.

The lack of said instructions has always annoyed the hell outta me!!!!! ;D ;D

Joe

Instructions ???? as a carpenter I now know that the first thing you do is put the instructions to one side and get on with it and just use them as a reference ,you know the old adage " if you can't get over it get out of it "  not really possible with kids tho , but many have tried to write instruction books for kids and failed miserably  ;D

any how like you have all said , I should talk to them and let them know that I'm not turning into a monster and that it's not their fault.

Guss this is what comes of trying to keep a lid on things and pretending I'm OK . s'pose that was never going to work was it .

Some times trying not to expose your kids to bad and painful stuff can really have an adverse effect on them, I guess I should have known that .

God bless you all

Nigel

Headache Boy uk wrote on Aug 23^rd, 2010 at 3:40pm:

Guss this is what comes of trying to keep a lid on things and pretending I'm OK . s'pose that was never going to work was it . Some times trying not to expose your kids to bad and painful stuff can really have an adverse effect on them, I guess I should have known that . God bless you all Nigel

That is the absolute gospel truth.  Think about it this way, kids' minds are fertile things and we encourage them to use their imaginations.......well, they know/sense something is wrong, and without them knowing for sure, their little minds tend to run amok and they can come up with some wonderful/not so wonderful things.  Fear of the *unknown* is the very worse thing you can experience.

One more thing Nigel.

I have 7 children.   At one time or another they have all said, "I hate you"

hurts?   of course.  BUT....I knew I was doing the right "Parental" thing when they said that.   ;) ;) ;)

Kids do not need a friend.  They need a parent.   Friendship with your children comes when they are about 23, 24 , 25.      And they come to love you unconditionally just like you loved them all those years.    You can go out with them and even have a beer, or a cup of coffee and they come to you asking for advice.   

LMAO   That's when you sit back and laugh at them.  ;)


Linda

I laugh at them too...Usually harder when they say something I've said to them for years!!!   ;D

Kids ahhhh!  Don't worry too much, it wouldn't take much to get them thinking otherwise... a few hugs, jokes, a bit of time playing with them.

I'm forever telling my son how much he loves me, my partner Joe too.  Sometimes (when I'm being especially grumpy) I feel that they need a gentle reminder  ;)

Kate

Quote:

Kids do not need a friend.  They need a parent.   Friendship with your children comes when they are about 23, 24 , 25.      And they come to love you unconditionally just like you loved them all those years.    You can go out with them and even have a beer, or a cup of coffee and they come to you asking for advice.

One of the best descriptions I've heard of growing from a boy into a man was this:

A boy becomes a young man around the age of 15 or 16, when he looks at his old man and says to himself, "I could take this m***** f*****."

And a young man becomes a man around the age of 23 or 24, when he looks at his old man and realizes that his old man is just as full of shit as he himself is.

Honestly, Nigel, they won't FULLY appreciate you until they've had a good, long glimpse of their own mortality.

1st: I am a huge fan of simple honesty. Everyone told me to hide my CH and O2 from my kids (7 & 4) bit I calmly explained it to them, tried to turn it into a science lesson as well as a lesson that sometimes life 'sucks' and you just have to stick it out.

2nd: I've had CH since I was 15 (and cancer, and ...) and it is definitely part of an image of myself that I am broken. And when I feel particularly broken and vulnerable, I do get more angry and 'snappy'.  (Like just now...*sigh*....my 4 year old just slammed the door on me!) Anyway, I've found that therapy can help and recommend it to anyone who is open to it.

Just my humble opinion....

Thanks again everyone I've had a chat with my kids and they said " angry dad? what are you talking about ?  your not angry dad "well I say thay but that comment was from Rhys my 10 year old son my 5 year old daughter said "oh" and then went back to Daisy land where it's all pink and fluffy.

So I guess it's all right after all I just hope that I don't get worse when my next cycle comes along , and I feel like it's going to be sooner rather than later  :(

God bless

Nigel