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Topic: Question for sufferers AND supporters??? (Read 810 times) |
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Woobie
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Question for sufferers AND supporters???
« on: Oct 14th, 2003, 8:31am » |
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I'm sure that feeling sorry for yourself when you're in a cycle is normal..(and COMPLETELY understandable, DONT get me wrong!!!!)
...... but at WHAT point do you stop feeling sorry for yourself and TRY to live a little....... ??
And at what point should a supporter step in to get said sufferer OFF the pity pot and off the couch??
Or SHOULD the supporter step in??
And, IF the supporter should step in .. HOW does a supporter kick someone off the pity pot?
If the kids are being affected.. and the marraige is being tested....... WHEN.. and HOW. ???
Would appreciate views from both sides.. sufferer and supporter.........
Thank you !!!!! 
tina 
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| « Last Edit: Oct 14th, 2003, 9:40am by Woobie » |
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BrainPudding
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Re: Question for sufferers AND supporters???
« Reply #1 on: Oct 14th, 2003, 9:40am » |
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heya tina
wow, your question is very hard to answer, not being in your personal situation.
from my perspective...
during a cycle, it's very hard to get up the desire to do anything, since you could be attacked at any time, with no warning. i'm in a cycle and went to dinner last night. on the way, i was attacked. i forced my wife to continue with our plans and luckily, the ha faded fairly quickly. i didn't feel like the life of the party, but i forced myself to be a brave boy.
during an attack, forget about it. give me a kiss on the temple and go away.
i guess it depends on the person. i don't want pity. i want you to understand that this sucks in unimaginable ways and i want you to cut me a little slack. wait until after my cycle and then we'll have cocktails with the neighbors.
i'm sure this doesn't help. sorry.
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Killroy 2.0
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Re: Question for sufferers AND supporters???
« Reply #2 on: Oct 14th, 2003, 9:50am » |
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I'm with Brainpudding 
It's hard to do much of anything when it cycle. I always give it a try
but ask for understanding when I have to leave the party early
Gena
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Jackie
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Re: Question for sufferers AND supporters???
« Reply #3 on: Oct 14th, 2003, 9:53am » |
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Hi Woobie...
I was watching this hoping a sufferer might give us some insight. Your question is a BIG one and can be very complex as well.....unique to the individual situation and persons involved.
Here's my opinion (and you know what they say about opinions... ;D).......NOW is the time to come off the couch and the pity pot .... that goes for the sufferer and supporter alike. The beast is a nasty, evil, mean son of a bitch. He will ruin your life IF you let him. He will steal your future IF you let him. The only way you can win is to FIGHT and FIGHT together. All parties have to do their part...even when everyone feels 'lower than whale shit'. One goes down the other has to kick them in the butt. It is impossible to win the battle while on the pity pot or the couch.
I don't mean to sound like an unsympathic hardass...believe me I'm not but when the beast is attacking you all have to fight him off together.
Big Hugs to you, Sweetie.
Jacks 
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vig
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Re: Question for sufferers AND supporters???
« Reply #4 on: Oct 14th, 2003, 10:10am » |
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can't answer it either because i've never had a supporter. I'm not allowed on the pity pot because I'm too close to the handle and would probably pull it and flush myself to the bottom. A supporter would be great as a monitor to make sure you don't slide too far into despair.
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nancyc
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Re: Question for sufferers AND supporters???
« Reply #5 on: Oct 14th, 2003, 10:16am » |
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Vig, i can definetly relate to your post...My son gets pisssed when i am getting hit..not at me but the beast ...and anger makes my chs worse...My mom cries alot over it...and I get depressed as hell and push them all away so i dont have to impose on them with my pain...I thank God I have friends here in Clusterville, or I would have gone down the drain a long time ago...We talked about something similar to this in Florida....Some clusterheads are stronger and have tougher skin than others do here...One thing we all have to remember is that we need to Support...not pity but be there...we may be the last lifeline someone has here....love you guys... ;Dnancyc
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| « Last Edit: Oct 14th, 2003, 10:18am by nancyc » |
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JDH
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Re: Question for sufferers AND supporters???
« Reply #6 on: Oct 14th, 2003, 10:24am » |
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Hi Tina,
Sorry to hear things aren’t the greatest right now but hang in there. This is going to end and Ramon will be pf again…I promise!
As far as I’m concerned as a sufferer it’s virtually impossible to carry on a normal existence when the head’s not cooperating. What sucks is that life keeps going on so you just gotta do whatever it takes to make it through the day. For me that means packing the ‘trex whenever I go within about a hundred yards of the o2, keeping an ice pack on my head between hits and coming here for support. I REFUSE to let this bastard win!
Just take it one day at a time and when/if either of you feel the need to vent, fire away! Remember, we’re here for you.
Jim
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ozzman
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Re: Question for sufferers AND supporters???
« Reply #7 on: Oct 14th, 2003, 10:58am » |
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Tina,
I know you both and it hurts me that this disease is coming between you two. As a sufferer at times I have let this thing take over my life but when I realized it was a personal choice and that in fact it was a choice I've said, effit. As long as I have my meds I will continue to enjoy (within reason) my life as a human being, employee, husband, father, son, etc. yeah it sucked going with my dad to his first hockey game ever to miss the first period while dancing, but the other two were great. Yeah it sucked going out with my wife on New Year's eve for the first time in I don't know how long and missing an hour prior to midnight sitting in the parking lot, but the midnight kiss was the sweetest. Sucked being hit a couple of times a night and then waking up to change my baby's diaper. Yeah it sucked hearing my (then 2 year old) saying "daddy head hurt? Maybe coffee could help..." but then knowing that I got to play with her afterwards was the best.....and I could go on.
In general, it sucks, but it is what you make of it when not in pain, for your life, for those around you. It is great to have my family that supports me when in pain, but when I'm not hurting it is MY responsibility to make the best out of daily life..
Ozzy
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Tara Ann
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Re: Question for sufferers AND supporters???
« Reply #8 on: Oct 14th, 2003, 11:01am » |
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I agree with everyone. And as JDH said life does go on whether or not you have a CH or not. Personally I get on my own pity pot from time to time, but my kids are my incentive to get off it (I think everyone has their own personal incentive that can get them off there pity pot they just have to figure out what it is) I had a terrible weekend with the CH's and we had plans to take the kids to the fair. My hubby asked if we should just skip going to the fair because of my head and i said NO!, we look forward to this fair every year and the kids (esp my son who is older and knew we were going to go see the tractors and animals) would have been crushed if we didn't go. I was NOT going to miss out seeing my kids excited and watching how they reacted to the animals and taking pics of them at the fair. So we went and I did get hit but I walked through the pain, yes it did suck getting hit at the fair, but other than that hour of the day we had a blast and I didn't let it stop us.
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BrainPudding
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Re: Question for sufferers AND supporters???
« Reply #9 on: Oct 14th, 2003, 11:25am » |
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yes yes!
the pain is temporary. life must go on. you don't want to be defined as a 'clusterhead'. do you?
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JDH
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Re: Question for sufferers AND supporters???
« Reply #10 on: Oct 14th, 2003, 11:31am » |
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on Oct 14th, 2003, 11:25am, BrainPudding wrote:| you don't want to be defined as a 'clusterhead'. do you? |
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Hell no!
It might be a part of me but it's not who or what I am.
Jim
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Dave_Emond
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Re: Question for sufferers AND supporters???
« Reply #11 on: Oct 14th, 2003, 11:54am » |
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A lot to try to answer, but if you sum up all the questions, it kind of sounds like you're asking:
When is enough ... enough?
Never.
As a chronic sufferer of CH, both myself and my wife ride an emotional rollercoaster.
We have a screen saver that reads:
"living with PAIN vs. LIVING with pain"
This helps us both remember what each other is going through. We are both victims of this Beast, so both of us often feel self pity when exhausted from the affects it has on our lives. We are adults and should be able to undestand this. The children are the real concern.
How both parents handle this will be an impression on them forever.
I'd suggest both read the articles in the new link that Elaine put up on the OUCH site, under "Family Services"
I wish you both well, know how hard it can be for everyone.
Dave
PS: Just a thought, but sometimes medications can be the cause of mood swings as well.
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Roxy
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Re: Question for sufferers AND supporters???
« Reply #12 on: Oct 14th, 2003, 12:04pm » |
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Hey woobs....I'm so sorry you are both having a tough time with this right now. Just remember, 'Bus is episodic, so it will end....it will just seem like later rather than sooner.
I think Ozzy stated it very well. Being chronic, you have no choice in the matter, you just have to keep plugging along. You might get hit at a restaurant, but you just dump your ice in a napkin, grab the trex and hang out in the restroom or parking lot till it's over. I just always try to think that I won't get hit....and if I do, I leave wherever or whatever till it's over, and then come back. Just keep the ammo handy, and don't let the damn things rule (or ruin) your life. No, it's not fun getting hit on a ski slope (and even harder to get some bare skin showing for the shot....  ), but it can be done. No it's not fun getting hit during your son's football game and missing a full quarter of it (just a shame it never happens during halftime), but you get to see three quarters, so it's better than nothing.
Ch's will always interfere.....you just can't let them cancel your life or your enjoyment of life. So you miss the best part of a movie....it will always be out on DVD later.... .
Yes...to answer your question, I do think the supporter should step in. Greg would not hesitate to tell me to get off the pitty pot. Then he would load my syringes for me, make sure the 02 was in the truck, and haul my ass back into the world....whether I wanted to or not.
Love you guys,
T
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BarbaraD
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Re: Question for sufferers AND supporters???
« Reply #13 on: Oct 14th, 2003, 12:34pm » |
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I agree - LIfe goes on with or without you. The only support I've ever really had has been from you guys - my family thinks a headache is for aspirin and get over it. Their problems come first and foremost. Mom is NOT allowed to be ILL.
I've adjusted my life around the HAs, but I do have a life (most of the time) and I try to laugh at the interruptions the HAs cause. I don't apologize for them because I can't do a damn thing about them.
When I get totally "down" I try to find someone to do something for. Or get a "project" that will take all my energies. How the hell do you think OUCH got started. I was down about as far as I could get during that time.
I envy those of you who have "loyal" supporters there with you to kick your butt and tell you to get up and go. I've never had that. I think we all have a lot more strength than we realize. We just have to tap into it.
Now, get off your rear ends and get up and do something useful!
Hugs  BD
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Patrick_A
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Re: Question for sufferers AND supporters???
« Reply #14 on: Oct 14th, 2003, 1:10pm » |
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CH's are just a blip in time. I am newly married for the 1st time, and only had girlfriends who had to deal with me during cycle. I never imposed my CH's on them that i can remember. I explained to them right up front what a CH meant, and i'd appreciate a neck rub or a temple massage while i was enduring the beast and that i'd recipricate whenever i could.
Everytime i am in the worst of my cycle, i try to remember that i refuse to let it beat me, Yes, it may slow me down a little, but not keep me down!
"For better or for worse", Do those words sound familiar?
Patrick
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Carl_D
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Re: Question for sufferers AND supporters???
« Reply #15 on: Oct 14th, 2003, 1:25pm » |
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Quote:| It might be a part of me but it's not who or what I am. |
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EXACTLY!!!
One day after being chronic for years, I got off the pity potty and said 'Screw this. It's not gonna take over my life a third time.
While I still have Clusters, they don't have me.
Peace,
Carl D
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Lori
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Re: Question for sufferers AND supporters???
« Reply #16 on: Oct 14th, 2003, 1:34pm » |
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You ask some hard questions. Obviously this is hard for all of you in the situation. As an episodic sufferer with a husband and two children, two part time jobs, and home schooling one of my two children. (Both were home my last episode).. I can only give my experience and how I deal in my case. When in cycle, it sucks. Life just sucks. It's not a fun time for me. I guess like anyone dealing with pain (cancer or whatever), it's not a good time to celebrate anything. Personally when I'm getting hit, leave me alone. I just can't deal with anything more than my own pain. When the HA stops, I go on with life the best I can while waiting for the next HA. Am I somewhat distracted in between? Absolutely!! I have no choice but to keep on going. I have things to do and a family to do them for! I try my best to attend functions, events. But if I am just completely drained, just let me be and go on to have fun without me. I don't want my family to stop living because I just can't go somewhere with them. But I know when I just need to be left alone. Sometimes especially during the peak of my cycle, I just really need to rest in between the HA's because I'm just exhausted physically and mentally. If your sufferer is episodic, thank GOD it will end, unlike for the chronic sufferer. Try to do your best to be understanding. I'm not the supporter so I can't truly relate to how you feel. I guess it would be very important that you seek out other supporters at this time because I can only relate to the person suffering. I do go on with my life the best I can. I don't give up, I fight and some days are better than others. But some days I just don't want to play or whatever. I need to be understood then. I hope you can get together with some others here that are supporters so they can help you cope with the pain I'm sure you feel too.
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| « Last Edit: Oct 14th, 2003, 1:38pm by Lori » |
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oringkid
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Re: Question for sufferers AND supporters???
« Reply #17 on: Oct 14th, 2003, 1:44pm » |
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I definitely agree with Jackie and Ozzman and all who say "Don't let it stop you". I've gotten hit at restaurants and movies and at other peoples houses and parties and bars....but the most important thing was I WENT. I STAYED! I had an hour or so that sucked, but the rest was great.
I've never feared the hits in advance to the point where it would stop me from doing what I want (although it's a great excuse to not do something you DON'T want to do LOL) And I've never been embarrassed by them. It's not like it's something I do by mistake or something that I feel I need to hide. It's not like being incontinent... that would embarass me and keep me at home.
Self pity DOES NOT shorten a cycle. It DOES NOT shorten or relieve a hit. It DOES NOT cure you.... So why indulge in it???? All self pity does is make you and EVERYONE around you FEEL BAD!!!
Yeah, we got an affliction that sucks. But sitting around and feeling sorry for yourself and bemoaning the unfairness of life just makes people not want to be around you. Think of all the time you are wasting over this.
There are 24 hours in a day... Say you get hit for 2 hours 8 times a day at peak... that leaves you 8 hours right?
Most of the time during a cycle though you are going to get hit for maybe 2 hours 2 to 4 times a day so you have 16 to 20 hours. ENJOY THOSE HOURS!! Don't waste them by stewing in self pity and don't ruin everybody elses time by demanding that they share in your self inflicted misery!!
I know that sounds WAY over the top in the harsh department. But think about it. How often do you want to be around someone who is a emotional bummer? When you are out of cycle do you go out of your way to hang out with someone who is wallowing in self pity?
So to answer your question Woobie, get him up, make him read this stuff and tell him that it is precisely BECAUSE you love him that you need him to start living and pull himself out of his quagmire of self pity.
Hope this helps
Sherry
sorry so brutal, but sometimes ya gotta be brutal.
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Elaine
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Re: Question for sufferers AND supporters???
« Reply #18 on: Oct 14th, 2003, 2:58pm » |
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I was chronic for over 20 years and I can honestly say that I have had my share of pity partys. Its ok to have a pity party from time to time. its good for both of you. What you both have to remember is don't stay on the pot to long, and flush! Then start all over.
I am lucky I got a husband and kids that do understand and they do fight with me against the beast. The biggest thing they did for me was when I was down they kicked ass, when they were down I kicked ass. When they were not able to, a few people here kicked ass  ! We also each gave the other room to have a pity party with out guilt! We all knew when time was to stop and fight again. You have to do as Jackie and Blake has done and my family and I ! Refuse to let it control your life! Work together as a team. You will win !
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Melissa
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Re: Question for sufferers AND supporters???
« Reply #19 on: Oct 14th, 2003, 3:50pm » |
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My husband thought I was being dramatic at the beginning of my last cycle, until during an attack I went to him in our bedroom while he was up feeding our son, and asked him to put a bullet through my head. I don't think he really understood the magnitude of the pain until that point. Now he knows that the pain definately IS torture for me. I do not feel sorry for myself, but more pissed off than anything that the CH's take a good chunk out of my day and my well being. I don't complain about the pain either, I'm very good at hiding it. When my husband asks me to go somewhere or do something, if I feel up to it, i'll go or do it. Otherwise, I just tell him to go without me and he's alright with that, but he does miss me. We both suffer through my cycle, but we make up for the time when I'm not. Don't get me wrong, my hubby is a VERY understanding person, but he's just the type that unless you can SEE the pain (i.e. broken arm, gaping wound, etc.) it must not be there. I think some of the most important things to ME as a sufferer are patience and more patience. If I'm not pressured to do stuff, I'll do it. I think that has carried over from my teenage years. ;D
mel
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Charlie
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Re: Question for sufferers AND supporters???
« Reply #20 on: Oct 14th, 2003, 4:11pm » |
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It was easier in some ways for me as an epileptic. I and others were used to my being out of it now and then. People understand epilepsy better and if I spent half an hour hiding out in order to avoid life, it wasn't a big deal to them. I didn't have a family either. Mine weren't chronic and I had months to "enjoy" seizures only.
As always, I fall outside the norm. Don't know if that's good or bad. Having this place would have been a hell of a deal though. It still is.
Charlie
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Woobie
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Re: Question for sufferers AND supporters???
« Reply #21 on: Oct 14th, 2003, 4:19pm » |
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THANK YOU all for the replys - and MAN, when Ramon sees this - i'm in trouble!!!
Did I forget to mention that this was a HYPOTHETICAL question.............. ????
Maybe he'll listen to you guys................
gonna go hide now......
Tina
and thanks to all of you who emailed me!!!
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| « Last Edit: Oct 15th, 2003, 1:46am by Woobie » |
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Re: Question for sufferers AND supporters???
« Reply #22 on: Oct 14th, 2003, 10:14pm » |
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Seem's simple enough...pity will not cure you, nor will it give you a better quality of life. So I ask, what would be advantageous about seeking some form of pity?
That's my point of view. Get back to work! ;D
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Re: Question for sufferers AND supporters???
« Reply #23 on: Oct 14th, 2003, 10:45pm » |
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Woobie,
You asked some real tough ones that I and my wife have asked each other a number of times. I think the answer can be summed up in one word, LOVE. My wife has loved me unconditionally through the last 25 years of CH. (We've been married 26) Especially the last 20 months that I have been chronic. It is only on a rare occasion that I have been able to go to bed with her because I cannot lie down usually before 2 or 3 in the morning. Then I don't have the energy to get up and go to work until late in the morning, so I work into the evening when possible. I have missed social activities, family activities, church activities, etc. because I either was trying to work a little bit or was down with a HA. She has always encouraged and supported me in a positive way without complaining even when we didn't have the money for groceries. It is only because of her love that I have bothered to try to carry on. Had she nagged or complained I would have hung it up months ago. BTW, I can be very hard to love when fighting these things.
One of the things that gets me down the most is the feeling that I am letting her down (along with the kids). Because of her unconditional love though I will not give up, and I will find a way to make it up to her in the future.
Hang in there. He's worth it, and you are worth it.
Praying for you.
Jerry
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Woobie
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Re: Question for sufferers AND supporters???
« Reply #24 on: Oct 15th, 2003, 1:50am » |
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Good thing I DO love him - LMAO! Been together for almost 19 years.. and been thru a lot of shiiiit. The beast does not have the power to destroy us -
but it sure does make life difficult.. doesn't it???
Tina
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| « Last Edit: Oct 15th, 2003, 1:51am by Woobie » |
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