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        New Message Board Archives >> 2002 Posts >> Just a question
        
(Message started by: Svenn on Nov 11^th, 2002, 6:36pm)

Title: Just a question
Post by Svenn on Nov 11^th, 2002, 6:36pm

Had a discution with my neuro to day.
And i`ll ask my friends the same question too-
Can we say that cluster is split in 4 equal hard parts

1 The pain

2 The fear of getting hit again

3 always to little sleep

4
The guilt we feel to our loved one

Just a question

I dont know what is hardest to get

Just asking

Title: Re: Just a question
Post by suzy617 on Nov 11^th, 2002, 6:54pm

I go along with the first 3 but I honestly dont feel any guilt about getting CH. I think the rest of the family does though cause they feel helpless. Dont think they are in equal parts either. I'd say 80% pain, 10% fear, 10% no sleep. Just my opinion.
suzy

Title: Re: Just a question
Post by Svenn on Nov 12^th, 2002, 1:22am

Hi Suzy617

My mistake but i was refering to the guilt that some of us feelin to let our loved one see what we are living trough under the fights.
My opinion is that they cant relaxe as they should be,never know when we are hit next time ++++

Title: Re: Just a question
Post by Riccardo on Nov 12^th, 2002, 1:30am

Svenn, IMHO, any of the four ones become the most important cyclically.

They are the definition of clusters..... and all the four are "MAIN"

Ciao friend

Title: Re: Just a question
Post by Ted on Nov 12^th, 2002, 1:39am

I'm with Suzy. 1-3. 4's out. But since I have no 4 I can't feel guilty about it.

Title: Re: Just a question
Post by BobG on Nov 12^th, 2002, 2:35am

I’ll go along with 1, 2 and 3,

Number 4………I refuse to feel guilty about getting clusters. I did not cause them and I'm not at fault. It's a disease just like cancer, arthritis and/or any other illness. If I had lung cancer I might feel guilty about it because I'm a smoker but I will not feel guilty about being a clusterhead.

If it were contagious and I passed it to a loved one then I’d feel guilty.

Title: Re: Just a question
Post by Ted on Nov 12^th, 2002, 3:45am

Bob. I just got off the phone with your family. They said "feel guilty!"

Title: Re: Just a question
Post by BobG on Nov 12^th, 2002, 4:02am

You must have been talking to my wife. She's Jewish and "feel guilty" is a way of life.

I counter that with "Oh yeah!. Feel this!"

Title: Re: Just a question
Post by Stampertje on Nov 12^th, 2002, 5:37am

Hi Svenn,

I agree with you on all four parts, but for me it's not equal.

1 => 50%
2 => 25%
3 => 15%
4 => 10%

I might even add a fifth one or add it to number four:

The screwed up social life it gives you... You can't make normal appointments with friends without considering the chance you have to cancel AGAIN!!!

Title: Re: Just a question
Post by suzy617 on Nov 12^th, 2002, 6:10am

I agree with Stampertje. Your date watching you bash your head against the wall is not a good thing. Gee, maybe thats why I haven't heard from him lately. :-/

Title: Re: Just a question
Post by spaceman on Nov 12^th, 2002, 8:14am

I'd say for me it's at least the first 3, part of 4 (I feel something like guilt toward my kids especially because it takes me away from them and when I'm trying to function through a 6 or a 7 my temper is out of normal line -- two nights ago trying to read my 5 year old a bedtime story and she's interrupting and I start getting all pissed off because my eye is tearing and nose is stuffing up...). On some level there's also fear that one or more of my three girls will inherit this crap.

However, it's definitely mostly the pain for me but the sleep deprivation starts to take its toll after a while. The social part is a bitch -- I'm picturing what it's like to try to sit through a business meeting with one either coming on or in full bloom (and trying to explain if someone asks).

;)

Andy

Title: Re: Just a question
Post by echo on Nov 12^th, 2002, 8:22am

I agree with the four you mentioned Svenn.

I only feel guilty when the beast has visited and subsequently destroyed family plans. I hate it when this SOB has denied my wife and sons the opportunity to do something they were planning on and excited about. They never make me feel guilty, it's self imposed.

Title: Re: Just a question
Post by catlind on Nov 12^th, 2002, 8:38am

Ditto what echo said.

I do feel guilty when I get hit and it completely disrupts my family. I hate what it does to my supporters...the helplessness they feel, and besides, I was raised to feel guilty...my mom was an expert ;)

Cat

What I wanna know is how the hell did you get them to give you immitrex Svenn? Right now they told me all triptans are DEFINITELY out of the question *pout*

Title: Re: Just a question
Post by woobie on Nov 12^th, 2002, 8:41am

Ramon says it's not so much quilt.. it's feelin "stupid" when you're laying there.. a grown man, cryin like a bitch cuz yer head hurts so bad. Having your kids see you cry and in a lot of pain.. making them worry. Our 8 yr old came up to me and said "I feel like my Daddy's gonna die." That's the guilt part... for him anyhow.
But we would agree on the 4 part thing.. but I would make it 5... because the social life and the job sometimes are out.

That's just our opinion.
Tina

Title: Re: Just a question
Post by NotH20 on Nov 12^th, 2002, 9:21am

Svenn - I agree with all your numbers, but I also agree with Riccardo that their percentages may be different at different times during the cycle.......

The guilt I feel is not about having ch's, but for my family having to forfeit plans, etc. due to the beast! >:(

Very good points Svenn

Mia

Title: Re: Just a question
Post by Mark C on Nov 12^th, 2002, 10:44am

I look at it this way, if it wern't for the pain none of the other stuff matters. The only problem I have with CH is the pain.
:)

Title: Re: Just a question
Post by Edna on Nov 12^th, 2002, 11:06am

Hey svenn, interesting analysis I think

and think the answer for each of us would be quite different. As for me, being episodic (and knowing I am at least lucky not to be chronic) #1 is only what I worry about.

I would explain for me: when cycle comes, the #1 is the pain........that is ALL I concentrate on.....I keep no fear of getting hit again......ONLY KNOW that it DOES come again.......and sleep, during my cycle, is a sin that no matter how hard I try not to commit will always happen at some point.

Guilt NEVER.....don't think I've ever felt guilty.....again may be due to being episodic. That gives me the chance to be the best I can be with my family when out of cycle. And of course, because they are ALWAYS there in support, none of us have any guilt.

But, I can also understand having such feelings as you say. All the more for all of us here to be supportive of one another!

Thank for your post pal, sure it'll get many of us to thinking and perhaps being grateful for what WE DO HAVE!!

EDNA

Title: Re: Just a question
Post by Margi on Nov 12^th, 2002, 11:19am

Good post, Svenn. I remember the first attack of Mike's recent cycle. Once it was finished, he just sat there with his head in his hands and said 'oh, i don't want to bring this on my family again'. :(
yeah cluster guilt is very real. and supporters feel guilty when their sufferers get hit, fearing that they've done something to trigger an attack.....did I forget to ask them to NOT put MSG in that Chinese food? did I stress him out too much? did I forget to put that Imitrex inhaler in my purse? both sufferers and supporters know, intellectually, that neither one has CAUSED clusters, but we both still feel guilt of our own kinds. it's contagious guilt.

Title: Re: Just a question
Post by Drk^Angel on Nov 12^th, 2002, 11:59am

I feel guilt in expecting my family to have to schedule everything around my clusters, and making them deal with them. How can anyone not feel guilt? No, you didn't cause the clusters, but it's still part of you, and therefore the responsibility is on you. That is why I fight the beast as hard as I possibly can. That is why I've tried most any treatment that's been suggested to me in the last 15 years. That is why I will continue to look for a treatment until a cure is finally found. I did not create my clusters, but I am ultimately responsible for treating them. I have not yet found a fully reliable treatment for my clusters, and until I do, I will feel guilt, but that guilt will strengthen my resolve to find something that works, and help others do the same.

PFDAN.......................................... Drk^Angel

Title: Re: Just a question
Post by brad267 on Nov 12^th, 2002, 11:59am

The Pain of a full-force Kip 10 that lasts any longer than 2 minutes = 50%

The Fear that a Kip5 will ramp to a Kip10, causing you to cancel all family plans at the first tingle of any ch = 20%

The Lack of Sleep that makes you iritable, emotional and weak when the ch's pound you into submission; sending you into a nasty self-pity rut, in a dark room, far away from "normal life" = 20%

Knowing the loved ones care, and although this hurts you more than them, it does hurt them! = 10%

The helplessness you feel and the anger inside, when a Kip10 hits, and for that hour or so, you are so incapacitated - you can not be the provider for your family, you can not be the protector for your family, you are not the man of the house -- and afterwards, you realize that your 5 year old "filled in" for you during the bedtime story = Priceless

I may have the stereotypical male ego, but the hardest part of these damn headaches is how it stops me dead in my tracks, no negotiations!, and I can't even do the simplest things that I'm supposed to do -- as a husband and as a father...

-just my two cents
Brad