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Topic: CH Depression! (Read 600 times) |
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Jasmyn
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CH Depression!
« on: Jul 31st, 2005, 2:02pm » |
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As I listen to the African rhythms in the darkest of African nights, I read through the supporter’s corner while tears streaked my face. We have great supporters all of them, especially Margi, who understand both sides.
How many of us are or were divorced or lost loved ones and partners as they did not understand or could not cope any longer? How many of us seem selfish, hotheaded, unsociable, tyrants, hurtful, too tired, withdrawn, frustrated, depressed or angry?
As a CH sufferer I would like nothing more in the world than to be the most loving and understanding parent and partner all of the time, even most of the time. I feel guilty for not being there for my family that I love more than life itself. Then I become angry because I cannot control or cope with the CH myself, I feel like a loser. I feel helpless because I don’t know how to help my family through this.
I feel stripped of all pride and dignity when they have to witness an attack and I can see the hurt in their faces and eyes. I get into depression because of meds and thoughts of guilt. I’m always tired, with lack of sleep, too much meds and just fighting each headache to survive. And the FEAR! The fear of the next onslaught, the PAIN, the fear of my family finally giving up on me and leaving and the fear of not being loved anymore.
And the worst of it is that I know that they suffer, because I’m withdrawn, I’m the hermit, I’m unfit to be myself and to be called a loving, understanding, caring and in charge parent or partner. I want to help myself but I cannot!
I am frustrated because I am chronic now after 14 years and this will never end!
Sometimes I want to tell them to leave, so that they can experience a better life but then again I’m too selfish, don’t want to live without them as they are my life, my reason to carry on and I my love.
Depressed, venting and crying, Sorry but where else can I go?
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Jazz 
Madness is proclaimed by society’s inability to accept its own infallibility
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nani
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Re: CH Depression!
« Reply #1 on: Jul 31st, 2005, 2:21pm » |
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Chin up, Jas. I think we've all felt like that at one time or another. For me, feeling helpless brought me to my darkest depths. I am a woman, and a mother. I can "fix" anything...why couldn't I fix this? I almost gave up. Almost.
I'm also strong, and independent, and stubborn and ornery...
...and I realized that I could win at least a few of the battles (if not the war...YET). I could "fix" my attitude about it all. I did not have to let this bastard win. I could muster every ounce of strength I needed to keep fighting the good fight. I could also "fix" how my loved ones viewed my, um, moodiness. I just reminded them often that they were not the cause of my pain, they were just other victims of it. I made (make) every happy moment count.
In many ways, in a sick sort of way, having a parent with CH can make our kids better people. They will learn not to crumble or lose their sense of humor under adverse conditions. They will learn caring and compassion. And they will learn about strength...the sometimes tremendous amount it takes to get through the "dark" moments.
I'm sending lots of vibes and prayers your way sweetie.
hugs, nani
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Jasmyn
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Re: CH Depression!
« Reply #2 on: Jul 31st, 2005, 2:52pm » |
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Thanks Nani. My two daughters are both teenagers and they go through a lot of hormonal and teenage stuff themselves now. I need to be there for them now, as they are only back with me for the last two and a half years because their father kept them away for nine years.
What you said I will try. They must understand it is not their fault. But what kills me is that no matter what, they cry everytime they see me go through a cluster spell and then I'm useless because I cannot comfort them!
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Jazz
Madness is proclaimed by society’s inability to accept its own infallibility
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LeLimey
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Re: CH Depression!
« Reply #3 on: Jul 31st, 2005, 3:26pm » |
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Jas reading your post is like looking in a mirror. You're not alone sweetie, CH has the power to dehumanise us all. Your greatest weapon is in recognising that because now you can fight it. Not in the middle of a hit, I don't think any of us are that strong.
Do your best to continue to take yourself off when you get hit, both for your sake and theirs, I hate anyone else to be with me when I'm getting hit. Make sure you have some quality time for yourself when you aren't getting hit too.. don't spend every minute of your PF time on your family, take the time to indulge yourself too.. your family will benefit from a mum who feels "worth it" (And Jas, believe me, you ARE worth it!)
You've done the hardest bit, facing up to the fact there is something about yourself you don't like and you want to change, thats pretty scarey and it takes a bloody big person to be able to do it.
It doesn't surprise me in the least you are that type of lady.
I wasn't here when you were on the site before so I've known you for a relatively short time but what I do know of you I like alot. I wish we lived closer. I'd dearly love to know you better but close or far I'm proud to call you friend.
Oh and as for Margi and our other supporters.. reading their posts has reduced me to tears more than once myself! They are awe inspiring, incredible people who I can't give enough credit or love too.. mainly because they won't let us! Thank you for recognising them and giving us the chance to add to it!
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Jasmyn
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Re: CH Depression!
« Reply #4 on: Jul 31st, 2005, 3:38pm » |
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on Jul 31st, 2005, 3:26pm, LeLimey wrote:Jas reading your post is like looking in a mirror. You're not alone sweetie, CH has the power to dehumanise us all. Your greatest weapon is in recognising that because now you can fight it. Not in the middle of a hit, I don't think any of us are that strong.
Do your best to continue to take yourself off when you get hit, both for your sake and theirs, I hate anyone else to be with me when I'm getting hit. Make sure you have some quality time for yourself when you aren't getting hit too.. don't spend every minute of your PF time on your family, take the time to indulge yourself too.. your family will benefit from a mum who feels "worth it" (And Jas, believe me, you ARE worth it!)
You've done the hardest bit, facing up to the fact there is something about yourself you don't like and you want to change, thats pretty scarey and it takes a bloody big person to be able to do it.
It doesn't surprise me in the least you are that type of lady.
I wasn't here when you were on the site before so I've known you for a relatively short time but what I do know of you I like alot. I wish we lived closer. I'd dearly love to know you better but close or far I'm proud to call you friend.
Oh and as for Margi and our other supporters.. reading their posts has reduced me to tears more than once myself! They are awe inspiring, incredible people who I can't give enough credit or love too.. mainly because they won't let us! Thank you for recognising them and giving us the chance to add to it! |
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Lelimey by calling me friend you will not know what that means to me. You guys give me hope everyday. Thanks for being you and being there.
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Jazz
Madness is proclaimed by society’s inability to accept its own infallibility
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burnt-toast
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Re: CH Depression!
« Reply #5 on: Jul 31st, 2005, 9:17pm » |
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I truely understand the depression. I keep myself up by refusing to believe it won't end someday. Please take care of yourself.
Tom
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jcmquix
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Re: CH Depression!
« Reply #6 on: Jul 31st, 2005, 9:58pm » |
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I know where you are comming from, Please read "Pi$$ed Off" in the supporters corner. My wife posted that one this week, we were just about at a breaking point.
I think this biggest part was that she felt so helpless each time I kept getting hit that there was nothing that she could do.
When I feel a hit comming on, I grab my meds and run for the bathroom, this was making her mad/upset/worried, she did not understand that I want to be alone until the BEAST goes back to sleep.
She & my Son got the support that they needed this week, myself as well here at this site from the people here.
I went 3yrs this last time before this BEAST came back, and I thought that I was going to do this all by myself, I was wrong. They read alot of post here and now really understand what CH is and what a Supporter is.
The biggest help is to show them the information here in this board, alot of people do not truly understand this pain until they read the actual account of a CH hit. Information is your best friend.
I still make my first place the Bathroom for a hit, I want to be alone, but I let my family know that I need this time and afterward we can discuss it. I let then know that I do not want to be seen during a hit and I think they really understand this.
All you can do is Fight the Good Fight. Just hang tough Girl, you will get those PF times...
God Bless You..
Charlie
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RobinHarber
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Re: CH Depression!
« Reply #7 on: Aug 1st, 2005, 12:07am » |
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Jas,
I, too, have turned inside myself. Reading your entry, I got so emotional because I could have written it myself. I feel so alone, numbed, fearful and smothered by the Beast... I am only an image of the person I used to be, and it's been this way for months.
I have to say, thank you for posting your feelings- no matter how sad they may be. Your words, today, turned a tiny light on inside my soul- a light that maybe will be able to lessen the guilt I feel for not being able to cope better, not being strong enough, not being resiliant and full of life- like the "old Robin" would be.
We all carry burdens, different in some ways, but yet so much the same. Knowing that there are others out there who do actually understand these burdens, in some ways validates all the pain and sadness we go through. And in a strange way, maybe that connection can bring us strength. It did for me.
You are not alone.
Thanks so much, Jas.
Robin
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nani
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Re: CH Depression!
« Reply #8 on: Aug 1st, 2005, 12:29am » |
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on Aug 1st, 2005, 12:07am, RobinHarber wrote:| in a strange way, maybe that connection can bring us strength. |
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That is exactly what this place is all about. 
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Jasmyn
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Re: CH Depression!
« Reply #9 on: Aug 1st, 2005, 1:12am » |
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Thanks you guys are Great!
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Jazz
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Sandy_C
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Re: CH Depression!
« Reply #10 on: Aug 1st, 2005, 7:20am » |
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I am fortunate that my children are grown and living on their own now. They have never witnessed my CH, and are somewhat clueless about what we suffers are going through. I have tried not to go into too much detail about it with them because I don't want them to worry about me.
They have their lives to get on with. However, my husband has witnessed many hits, and it tears me apart watching him suffer with fear and his feelings of inadequacy to help me. I try very hard to go to my little, quiet room to fight my war against the beast so that he doesn't have to watch it.
I too have had bouts of depression, even suicide in the early times. I battle against these feelings and thoughts every day, in and out of cycle. I battle against the absolute terror of wondering when my next cycle will begin, and wondering if I can get through another one still alive. Finding this website was a Godsend for me. Knowing that there are other people out there in the world who have experienced exactly what I have, many of them much worse than me, gives me the strength to keep going.
Hang in there Jas. We're all here for you....
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Lean on me when you're not strong
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I'll help you carry on
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Somebody to lean on
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millie the episodic
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Re: CH Depression!
« Reply #11 on: Aug 1st, 2005, 9:03am » |
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Jasmine,
I have to said that I am sorry that you are going through, and I wish that I could give you the hug that you need right now  , but... my prayer goes out to you and every other clusterhead.
Your venting sure sound like me. I am sure that every clustersister has felt the very same feelings, only to have it blamed on hormones, PMS, or other female conditions. 
The one thing that I have to suggest to you, is to not let them witness the fight, if you can help it. 
It is enough for them to know that your'e going through, but for them to SEE it is can be tooooo much.  And like everyone has said, you can TRY to make up for the pain that you may have shared with them. Because after all, it is YOU who is in hell.
Try not to worry too much about the things that you can't change (these hellofaheadaches). You have to just let them know how much you care for them, and pray that they don't have to go through them. Because they (the doctors) still don't know what,where,when, or how, about these bastards.
I have a 19 year old daughter and a 17 year old son. My hope is that they never have to experience any kind of pain like this. I have a husband who is still trying to help me deal with them. My hope is that it will never become too much for them to deal with, as I don't know what I would do without them. 
Just go to your room and take your ammo with you, and do battle. Why let them see the fight, when they can't help you fight (there is no tag team in these rounds!!!).
Just know that you are not alone in how you feel, you just have to TRY (for yourself) to cope with your situation. 
I can say these things because I have been in this battle for about 14 yrs, and my fear is that I will one day become CHRONIC! 
More strength, Millie 
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Jasmyn
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Re: CH Depression!
« Reply #12 on: Aug 1st, 2005, 1:21pm » |
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I am here because of good people like you.
When I feel that I cannot go on or cope anymore I come to this family because I know, even if I do not write or vent, I will always read something that will give me inspiration, laugh at something that will uplift my spirit or cry for someone and know I'm not alone.
Best extended family a person can have!
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Jazz
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playmesomeblues
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Re: CH Depression!
« Reply #13 on: Aug 1st, 2005, 9:11pm » |
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Hi Jas,
I suspect you're doing much better with your family than you understand. I know the note you sent me the other day gave me a lift, and I'm across large bodies of water from you. To all the good advice you've already gotten, I'd only reiterate, do take the time to take care of yourself too. As for me, my girlfriend now has never seen me in a cluster before now. She gets scared, worried and really mad when I shut down and withdraw. I try to explain later, after, what else can we do? Do keep up the fight Jas, from what I've read here, you've got friends all over the world!
David
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RobinHarber
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Re: CH Depression!
« Reply #14 on: Aug 2nd, 2005, 1:04am » |
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I was talking to my mom last night about a lot of the stuff that I've been feeling lately -- all the stuff that's popped up in this string, and she said the most enlightening thing... yes, I said it- MY MOM SAID SOMETHING ENLIGHTENING!!!
I was talking about how I couldn't seem to break out of my shell of indifference, that I knew that my life was going on around me and I could not make myself care. It seems as though my husband has kind of moved on and learned to live his life and leave me alone until I'm ready to be social. I guess that's good, in a way, I don't know. But it hurts that after only 2 years of marriage, I realize quite clearly that I have become an "absent wife". Not just the headaches, but the months and months of drugs piled on top of each other- I am not a whole person, and I don't have the energy or will to care. Yet it still bothers me enough to tell my mother, who I am not especially close to... and she said:
"You are not as absent to others as you appear to yourself."
Meaning that I know who I am- in my head- like nobody else- not even my loving husband- does. He doesn't see, hear, feel the amount of the void as it impacts me. Nobody does. Nobody knows how I usually think, and how that differs from the way I am thinking now. And though I'm sure some amount of that shows through, there is no way it even comes close to reflecting the truth. For some reason, that really made sense to me.
Let me know what you guys think.
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lmarkins
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Re: CH Depression!
« Reply #15 on: Aug 2nd, 2005, 7:44am » |
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I guess you could say I've lived the CH depressive life. Loner as a kid. Called lots of names even through adulthood- PSYCHO being the latest nickname I have at work. Funny what you hear others saying when they don't know you're listening, huh? Only strong people live through that type of humiliation. Guess what? Strong people are weak compared to us C-Heads. Only we know the pain we feel and only we can see the damage it does to our families. My loving wife and daughter, whose hearts are as big as gold seem to crumble right along with me after a while. They do understand the need for isolation, but I can tell it wears on them. It's so stressful for them. My mother said she wanted to do anything to stop the thrashing and screaming baby, even put me out of my misery way back then.
Someting I've noticed about myself is that during the PF times, I seem over-happy to those around me, ergo PSYCHO. People think I'm putting on an act- nobody should laugh as much as I do at mundane things. Don't trust him- he's smiling all the time, he must be wacked. Then I question myself after a while, thinking maybe they are right. But I know deep in my soul, I'm happy because I can function PF. That's really what life should be about. Making the most of our lives while we can with the one's we love. Enjoy those PFDN's like they are your last. They just may be. Always tell those that are with you that you love them.
In closing, I'm sending out good vibes to all CH'ers and their supporting members. Last night was a doozy- eight whoppers between 5pm-4AM. Walking around in a shadow at work right now with lightening bolts stopping in to say hello every few minutes.
You'd think 45 years of suffering was enough- but NOOOOOOOOOOOOOO! 
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Jasmyn
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Re: CH Depression!
« Reply #16 on: Aug 2nd, 2005, 8:51am » |
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on Aug 2nd, 2005, 1:04am, RobinHarber wrote:
"You are not as absent to others as you appear to yourself."
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Good one to remember!
Vibes and PFDAN's to all suffering!
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Jazz
Madness is proclaimed by society’s inability to accept its own infallibility
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Ghost
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Re: CH Depression!
« Reply #17 on: Aug 2nd, 2005, 11:20am » |
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Jas I know exactly how you feel wish there was more we could do. dont give up lady we are here for ya even though we are a long way away. I hope the beast dont beat ya. cant cut it a break because it wont cut you one. And you are a friend and we all need each others support. If ya need to talk any time some will be here for ya ... they have been for me and I can be a real pain.
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Sandy_C
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Re: CH Depression!
« Reply #18 on: Aug 2nd, 2005, 11:53am » |
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on Aug 2nd, 2005, 7:44am, lmarkins wrote:I guess you could say I've lived the CH depressive life. Loner as a kid. Called lots of names even through adulthood- PSYCHO being the latest nickname I have at work. Funny what you hear others saying when they don't know you're listening, huh? Only strong people live through that type of humiliation. Guess what? Strong people are weak compared to us C-Heads. Only we know the pain we feel and only we can see the damage it does to our families. My loving wife and daughter, whose hearts are as big as gold seem to crumble right along with me after a while. They do understand the need for isolation, but I can tell it wears on them. It's so stressful for them. My mother said she wanted to do anything to stop the thrashing and screaming baby, even put me out of my misery way back then.
Someting I've noticed about myself is that during the PF times, I seem over-happy to those around me, ergo PSYCHO. People think I'm putting on an act- nobody should laugh as much as I do at mundane things. Don't trust him- he's smiling all the time, he must be wacked. Then I question myself after a while, thinking maybe they are right. But I know deep in my soul, I'm happy because I can function PF. That's really what life should be about. Making the most of our lives while we can with the one's we love. Enjoy those PFDN's like they are your last. They just may be. Always tell those that are with you that you love them.
In closing, I'm sending out good vibes to all CH'ers and their supporting members. Last night was a doozy- eight whoppers between 5pm-4AM. Walking around in a shadow at work right now with lightening bolts stopping in to say hello every few minutes.
You'd think 45 years of suffering was enough- but NOOOOOOOOOOOOOO! |
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Tell em! Pass out the paper describing Ch to every one of those smucks! Tell them you have a debilitating condition and that if they had it, they would probably commit suicide. Ask them if they knew you had cancer, if they knew you had a brain tumor, if they knew you had Parkinson's Disease, if they knew you had any other incurable disease or condition, would they treat you differently? (Because, so far{she says hopefully}, this condition is incurable). If they answer, "of course I would treat you differently", then the answer is to educate them on CH. If their answer is "no, I'd still treat you like a PSYCHO, then you don't need them. Give them this - 
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Lean on me when you're not strong
And I'll be your friend
I'll help you carry on
For it won't be long
Till I'm gonna need
Somebody to lean on
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