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Mattrf
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Dealing with family?
« on: May 12th, 2006, 3:26pm » |
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First of all I suffer from SUNCT not CH at least that is what the new doctors says and it is very similar to CH.
My family lives about four hours away from me and are driven me nuts!
I have tried to get them to understand what I am going through and they just don’t get it. I have sent all kinds of emails letting them know what is going on, how much pain I am in and how depressed I have become and all they seem to care about is that I don’t come visit or come up for functions. The last thing I want to do is go on a long road trip with this kind of pain. My sister was one of the worst every email had something it trying to guilt me into coming up and I am just sick of it! My dad is no better he does the same dam thing how the hell do you make family understand?
I sent them the letter to employers a long time ago thinking it would help them understand, I sent them the link to this site hopping they would visit and get an idea of what we go through. I finally got to the point with my sister that I bared all and told her how close to suicide I have come and I think she might have finally clued in, she called me yesterday a rarity at best and I laid into her and she started apologizing like crazy and said she finally understood and was so sorry, about frigen time I am six months in on this cycle now and it is my second time in three years and she finally gets it?
This is such a hard thing to get through and having family that treat you like its just a headache no matter what you tell them just sucks, my wife said if they could only see what she sees me go through in a single day they would all shut the hell up and I think she is right.
Sorry guys about the long rant but they just piss me of beyond belief. This is such a difficult thing to go through and we all need support and the lack of support from my own family really hurts.
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There is no stronger a person then one who can deal with brain pain and still function.
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Charlotte
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Re: Dealing with family?
« Reply #1 on: May 12th, 2006, 3:29pm » |
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I appreciate the rant. One of my sisters attacks if you don't respond properly to her conversation and I had a bad couple of years paying for a moment of inattention while getting slammed.
Hang in there.
Charlotte
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seasonalboomer
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Re: Dealing with family?
« Reply #2 on: May 12th, 2006, 3:43pm » |
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my family is the same way. i was given a rare opportunity for perspective however upon receiving a trove of letters of my great-grandparent's through WW1. my great grandmom, who had 2 little ones during WW1 in Northern Ontario received letter after letter from her mother talking about how they really needed to come to Orillia to help on the farm and how her father wasn't doing well, and this sister had problems, and so on. and there she was ironing clothes to put food on the table with two kids alone for close to 4 years.
the urge to guilt family members into doing things is apparently tied to some sequence in the DNA and will never go away.
scott
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LeLimey
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Re: Dealing with family?
« Reply #3 on: May 12th, 2006, 5:16pm » |
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Print this off and send it or copy it and email it.. it might do them some good!
No one who doesn't suffer from this can ever truly get it. I do include our supporters in "those who suffer".. they suffer in a different way but it doens't hurt any less. Those who are outside the immediate loop just can't comprehend what you and your immediate family go through.. hopefully this will help
Helen
http://www.clusterheadaches.org.uk/home/index.cfm?address=../clusters/no te_colleagues.cfm
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The arsehole I'm divorcing needs to get a life and stop stalking mine
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Mattrf
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Re: Dealing with family?
« Reply #4 on: May 12th, 2006, 5:20pm » |
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I sent them this a couple months ago and it is like they did not read it. Guess there is not much you can do but some support from my family would be nice.
My in-laws live close by and they have been great and very supportive to myself and my wife, they have taken the kids to give us a brake on a regular basis and do a lot of praying for us. Guess I got luck when it comes to in-laws, they are the bomb. To bad my own folks aren’t as supportive.
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fireball
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Re: Dealing with family?
« Reply #5 on: May 12th, 2006, 6:18pm » |
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Hello-
I just wanted to say that I am really sorry for the lack of support from your family.
My husband is a sufferer, for 8 years now, and his mom and his sister and her family live in another state. They just don't get it either. I don't know if it's because they aren't here to see him all the time and to actually see for themselves what he goes through. That isn't an excuse though.
I hope that now that you have possibly gotten through to your sister, she can be your link to getting through to the rest of them. If only they would become educated on your condition...
I'll pray that your cycle ends soon. Give your wife a hug for me. She sounds a lot like me 
Take care.
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Garys_Girl
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Re: Dealing with family?
« Reply #6 on: May 13th, 2006, 1:33pm » |
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Since we wouldn't go visit her in Chicago (from NJ), Gary's mom is here with us now for a little over a week. We've tried explaining CH to her, and we printed out lots of material (including the letter to employers) that she's read. I've told her 1000 times not to take it personally if Gary is short, mean, irritable, &etc. with her, and DEFINITELY to not talk to him when he's getting hit.
Last night he had the 02 down in the living room and we were all watching a movie. He likes having the TV on when he's getting hit - it helps distract him. He got hit with a pretty bad one. She starts asking him questions. I lean over, put my hand on her knee, and whisper "Don't talk to him. There's nothing you can do. Don't take it personally, there's nothing anyone can do."
Gary's mumbling through the 02 mask, swearing under his breath, and hitting himself on the head with the clicker.
Mom can't deal with it. She HAS to say - "TAKE THE CLICKER AWAY FROM HIM! HE"S GOING TO HURT HIMSELF!"
AAAAAAAAARRRRRRGGGGGGHHHHHHHH!
Now Gary's screaming at her - IF YOU CAN'T DEAL WITH THIS, LEAVE THE F****** ROOM!
Of course, her reply is to start crying - he doesn't need to swear at me!
I take her by the hand, lead her upstairs.
"BJ - you cannot take this personally. He's not swearing at you, he's swearing at the situation. And any pain Gary causes with the clicker is nothing to what he's experiencing. The pain from the clicker is to distract him from what he's going through. We can always replace a broken clicker. Thank God it's just a clicker - we can't replace a broken Gary."
No matter how much they read, until they're a witness to it, they just don't get it. And even then........
My heart goes out to you. Thank God this board is here!
Laurie
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Laurie
"It's comin' like a freight train - can't you hear it?" - Gary
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mrnice
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i too find it that much harder to deal with clusters because of the piss poor relationship I have with my family. Hard to build a relationship when you are in pain all the time...and even harder to deal with pain without support there for you...im in the same boat
its almost not even worth trying to explain that you have headaches to people, I just keep it to myself most of the time.
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Mattrf
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Re: Dealing with family?
« Reply #8 on: May 15th, 2006, 11:21am » |
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Well my sister called me on Friday after I sent her an email telling her yet again how bad it is and that I was suicidal due to this and was pissed that I had to bare all to try and get her to understand what I am going through. As soon as I heard her voice I started going off on her, I have just had enough crap from her and she started apologizing and saying how sorry she was for not understanding and that when I said it was like a migraine that never goes away she understood how bad it must be since she has had migraines before.
It’s funny I told her that a long time ago and she also said that she was my biggest supporter in the family and always defended me, what a load of crap! She is the biggest gossip in my family and I know she has been bitching to everyone and turning them all against me and I think I am even more pissed at her now then before.
When I was single I used to always do all the driving to visit family, hell I had the time but now I am married and have kids and they still expect me to do all the traveling and feel justified in giving me crap for not visiting when none of them come visit me, what a load of crap, I even asked her since when is it my responsibility to do all the driving and make all the phone calls? I think what sent me over was finding out she was in town to visit her husbands family and did not call or come by and was maybe three miles from me and her husband who used to be one of my best friends has been in town multiple times and has not called me once, talk about feeling deserted by your family.
Ok I am done ranting again.
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Katherinecm
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Re: Dealing with family?
« Reply #9 on: May 15th, 2006, 11:37am » |
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That sucks Matt. And I thought my family was bad.
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"We are not human beings having a spiritual experience. We are spiritual beings that have a human experience." Teilhard de Chardin
"It is not death or pain that is to be dreaded, but the fear of pain or death." Epictetus
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superhawk2300
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Re: Dealing with family?
« Reply #10 on: May 15th, 2006, 3:56pm » |
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I went through a period where I purposly "removed" myself from all family contact - ALL.
One day I sent out an email saying I was dealing with hard times and I didn;t expect them to understand but I wouldn;t be around for awhile, and not to worry or take it peronsally.
I didn't answer my phone when they called, I ignored all emails and no one lives close enough to come over. They all did whatever they were gonna do and I just did what I had to do. Some people can try to be understanding and some can't but can let it go. If they don't you can "make them" let it go for them.
If being around causes you pain - remove yourself. Take care of yourself and those that really love you will get it sooner or later - that is what I thought and I did what i had to do.
Hope peace finds you.
Jamey
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sandie99
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Re: Dealing with family?
« Reply #11 on: May 16th, 2006, 2:59am » |
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Don't feel sorry about venting. That's why we're here for, to talk about the pain we all know so well. I'm so sorry that your family doesn't get it... 
But the thing is that many families don't. My ch begun in 2001 and it took my mother (who has seen me hit many times) this Spring to understand what it's like.
I don't even think about the rest of my large family, some of them think that I have "some sort of headache" or "migraine" (well, Mum spread that info around without telling me few years ago), most have no idea. My aunt thinks that I'm imagining it all...  And I must admit that few times when I got hit badly I wished that she would have been there to see me "imagining" it all... Maybe it would be good to let your familymembers see the hell you're going through? I know that I have made the mistake myself that I used to hide my pain from everyone as much as I could. But not anymore. The next time I get hit, I get hit and everyone can see it. No more going into other room for this woman.
I do hope that your family will understand what it's about and what you need. It's not easy, I know that. Familymembers are good with guilt trips, too. I think it's important that you know yourself what you need and then do what you need to do. In ideal world our closeones would understand what we need right there and then, but too bad this world isn't ideal one. Many people don't think about others a bit, just what they want. In that situation is so easy to forget that a closeone lives with pain like we do. This is YOUR turn to be bit selfish - don't go to any family get togethers, if you don't feel like it!
Best wishes,
Sanna
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"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
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mynm156
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Re: Dealing with family?
« Reply #12 on: May 17th, 2006, 12:04pm » |
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As much as I understand what it is that you are saying because we all have to live with the knowlege that the beast is gonna come a callin and there is nothing that we can do about it. That is just my and probably your families point. You still have to live your life! We cant NOT do things because we fear the beasts arrival. Do you put up with these attacks at work? Again we all understand the pain and the anxiety that you feel. However, if you are not living your life the best that you can then you are letting the beast beat you. Go see your family and excuse youself when the pain comes let them SEE you dealing with this and MAYBE then they will understand a little bit more. Live your life man!! Live your life as much as it hurts!!!
Good Vibes!
Your Brother in Pain!
MYNM156
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| « Last Edit: May 17th, 2006, 12:07pm by mynm156 » |
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Mattrf
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Re: Dealing with family?
« Reply #13 on: May 17th, 2006, 12:34pm » |
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The first time I was in cycle I did go see my family for the holidays and they did get to see me in pain and how disconnected I seemed when I was in pain but it did not help them understand, unfortunately. I think that is one of the soar points with me, how could they see me go through that then act like it doesn’t happen and give me grief?
I love my family but I think that the relationship with some of them has reached the braking point and I do not think the damage caused by there actions will be repaired fully. My wife is more upset with them then I am, I think I understand that since she sees me go through this on a daily basis and knows what it does to me and for my family to be so insensitive really makes her mad, and makes her not wont to go see my family as well.
My wife’s parents live close by and have been our biggest supporters and have gone far and above to help us out, they take the kids when we need a brake and they will even bring us home cooked meals some times and have never been anything but supportive to my wife and I, god knows what we would do without them. I guess that is also a double edged sword since I see how supportive they are compared to how unsupportive my family is granted they live far away and could not do some of the things that my in-laws do but they could try and do something.
I always thought I had a great family and that we where very close, and I have had my bubble popped and have been confronted on just how dysfunctional my family is and it sucks to have to face something like this and does not set a good example for my kids.
As far as living my life like I did before this, well my hat is off to any of you that can do that because I sure cant. When in cycle I feel disconnected from the world in general, I have no enjoyment in anything and about the only thing that brings a smile to my face is my youngest daughter who is 7 years old and is the best therapy on the planet for me. She never fails to make me smile no matter how bad I feel and that is a priceless commodity these days.
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GuitarBill
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Re: Dealing with family?
« Reply #14 on: May 19th, 2006, 2:48am » |
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The only people who will ever understand what you are going through is US. No family member. No doctor. No parent. No husband or wife (even if they want to or wish our pain away). And that is the truth....
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| « Last Edit: May 19th, 2006, 2:49am by GuitarBill » |
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Pffst! Yeah....define "headache"...
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BarbaraD
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Re: Dealing with family?
« Reply #15 on: May 19th, 2006, 5:40am » |
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Is someone has never experienced a CH - they cannot understand the pain we endure and what it does to our lives. We just have to be tolerant of these people.
Most people have "headaches" and they take something and it goes away. They hurt and that's the only pain they can relate to. They just can't imagine how a "headache" can bring us to our knees and there's nothing we can do about it. And I don't think there will ever be a way we can explain it to them. Even when they see us going thru a hit - they just can't relate...
So the best advice I can give you (after years of practice) is just "ignore" them and come here for support.
Hugs BD
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Mattrf
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Re: Dealing with family?
« Reply #16 on: May 25th, 2006, 4:27pm » |
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Well my sister again emailed me and gave me some grief for not coming to see them, what else is new. She got the better of me and I tried explaining to her how bad it was and even told here that the reason I got into see my new doctor the same day I called him even though he had a month and a half waiting list, was that I told him that I was becoming suicidal, and I told her it wasn’t just a trick to get in sooner it was the truth and I hated the fact that I had to share that with her to try and get her to understand what I am going through. Really pissed me off, I also told her again that it is like having a migraine that never goes away and last for months, she has experienced migraines before so she should get a clue. Well couple days later she calls me and I was hurting and as soon as I heard her voice I started going off on her, I know my bad but I had just had enough.
She said that when I said it was like a migraine that doesn’t go away she finally got it, now wait I have told her that at least five times and now she gets it? She did do a lot of ass kissing but like I said in my last post, the damage is done and some of it is not repairable and I hate that since my sister and I where really close at one time but not now.
One of the things I was mad at her for was giving me a hard time for not visiting when I know she was in town and did not even call me, and my brother-in-law has been in town multiple times and the same thing no call no visit but I am the bad guy.
Like you guys say the only one’s who understand are those who suffer and it can be a very frustrating place to live in.
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mynm156
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Re: Dealing with family?
« Reply #17 on: May 25th, 2006, 9:25pm » |
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Dude, You can only do so much but I'll say again you cant let clusters rule your life!!!!
MYNM156
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thebbz
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Re: Dealing with family?
« Reply #18 on: May 25th, 2006, 9:30pm » |
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All the best in your situation. Everyone in my family knows what Bite Me means.  They are the first to clear out anyway...LOL 
jb
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