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Topic: No more Enabeling !!! (Read 668 times) |
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NYRenee
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No more Enabeling !!!
« on: Aug 10th, 2004, 2:35pm » |
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I haven't posted here in a long time...but I feel the need to vent. My boyfriend is diagnosed with chronic clusters. They started about 2 years ago, and I’ve been there from the very beginning...the late night ER visits, the misdiagnosis, the crying, the frustration.
With his blessings I have done so much research on CH, I have shared with him the info I have found. Several months ago he knew he would be losing his health insurance (he was still on his ex-wives) I kept insisting he go to a new neurologist before he lost his insurance, as the last guy he went to was a joke. Needless to say he never went because his pain doctor was writing him a good prescription (some kind of heavy narcotic) So needless to say his insurance ran out, one of the prescriptions he gets is way out of his price range to pay out of pocket, so he's been in a great deal more pain then in other months. And I feel for him because I see the pain in his eyes, the misery is non-stop. However, not only did I want him to see another neuro to get the medical attention he truly needs, but I have a selfish reason in wanting his meds changed as the narcotic also makes him impotent, he tells me how sorry he is that he can't have sex with me, but after hearing that for two years and having sex 5 times in a 12 month period tends to make me angry because he 1) didn't try to do something about it before he lost his insurance and 2) doesn't take some of the advice I give him...so that he will hopefully feel well enough that we can have some kind of relationship other than being, well, roommates.
I have done everything that I can do for him, and believe me that includes leaving him alone. Between the two us we have found that some of his triggers come from food, specifically bananas, nuts, aged cheeses, yellow food coloring #5, chocolate, soda, and recently discovered white bread does a number on him. ( which I know food triggers are migraine related, and knowing many Clusterheads also experience other neurological disorders...I told him he needs to talk to a good neuro, that maybe he developed a food allergy and/or migraines on top of his clusters…do you think he would bring this up to his doctor? No of course not.)
So anyway, this whole week he has been nothing but a miserable cus, I have given him his space, I have given him his ice bag, told him I will be in the other room if he needs me, mind you I have been unwell for the last month (an undiagnosed fatigue mono like virus) so last night he was just in horrible pain and he was going over the things he ate during the day, and he had pizza again...third day in a row. I said to him nicely, "you need to stay away from pizza for awhile the same thing happened when you ate too much white bread in a day" (I think it’s the gluten or the malted barley flour that gives him HA’s) I started to say, “tomorrow why don't you stop at Mickey D's or Wendy's" he interrupted me and said I'm not going to Mickey D's to get a Effin Salad", I got up and said nonchalantly, "Fine… see if I care anymore" he then had the nerve to say, "Why are you being such an Ass!", I was in the kitchen and it took all I could to not fly off the handle as this wasn't the first time he has been verbally/emotionally abusive....but an Ass? He has called me other names in the past. So, I said “I didn’t think I was being an Ass, I was only trying to give you some ideas for lunch tomorrow”. His only reply was “you are being an Ass”. People I have been in a emotionally and verbally abusive relationship before, and I have come up with excuse after excuse for the things he says to me, but last night just pushed me over the edge.
Well to end this sad and slightly commical tirade, I basically can't take it anymore, you can't help a person who won't help themselves, my dad has always had a saying "If you always do what you always did, You will always get what you always got"
...if he wants to stay on meds that numb the pain, but don't help him with the actual cause but will make him impotent, if he wants to eat foods that he knows that they give him horrible HA’s and/or might be a trigger to his clusters then hey have at it, if he needs a ride to the ER he can drive himself, call a cab I don’t care. You know how alcoholics have enablers to their drinking? Well I will no longer be an enabler to his pain…that is I’m no longer going to be a concerned sympathetic person, if he won’t try to help himself, if he wants to wallow in self-pity, then why should I stress myself out for him?
I have my own problems/illness/family issues to take care of and if he thinks I was an Ass last night, well I’m might be moving up to Effin Bitch with in the next few days. Please don’t get me wrong people, I know I’m sounding cruel and I am a care taker by nature, I just want my man back, I want to go to the movies, I want to go out with our friends, I want to go bowling, I want to go for long walks hand in hand with him, I want to have sex dammit! But I won’t put up with the name calling anymore, I want and deserve respect. This is more than a clusterhead issue, this is a relationship issue with the underlying cause a medical issue. Dr. Phil I need you !
I was feeling a bit guilty for feeling the way I was, but after venting to cyberspace, I’m feeling a bit better about myself. So Thank you CH supporters for letting me vent!
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synergy2120
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Re: No more Enabeling !!!
« Reply #1 on: Aug 10th, 2004, 3:26pm » |
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Hi - sounds like thats been building up for some time!
My partner is a chronic sufferer too and i dont think your cruel hun - but one thing i have learnt with marc is to not press him with issues. It is frustrating when it seems that they wont help themselves but marc went through a phase of this last year.
He was on so many drugs from the docs that he stopped taking them - none were helping, i knew he hadnt been taking them long enough to feel effect but he wanted to stop taking them - i had 2 choices:
1. shout at him and make him feel worse
2. stand by his decision
I did get angry - just like you - but it started tearing us apart - so i stopped and let him do it. He wasnt any better off or worse off but our relationship got better.
It can be really hard sometimes to support someone who is ill that is giving up - it hurts deep inside because all you think is "ive helped you so much and you throw it back in my face like this".
Marc has now decieded to try meds again - he is still chronic but feeling a lot stronger towards the situation and most of that is from the support he gets from me and other people.
I long to do things has a family too - sometimes im selfish and shout at him - sometimes i get depressed (espicially when you see your friends having nice times out).
Me and marc have not had a night/day out together for nearly a year and it hurts. We hardly get close. So i no where your coming from hun - i feel your anger and frustration.
Marc has verbally abused me on rare occasions and 1 thing i told marc is that im with him because i love him - not because i feel obliged to be. He knows that if he treats me a way that i would not normally stand for - then i would leave - im not with him because he is in pain and needs me.
I know it is hard but try to stay patient with him and try not to hound him when it comes to food. When he is feeling strong enough to try he will try.
It takes a lot of patience and love to be a supporter of CH but it makes you a lot stronger as a couple.
Venting out anger on this site really does help though and that is one of the reasons it is here - as we know that it is not easy.
You are not alone in the way you feel and i hope things improve - please keep posting as we are here for you (and your partner) when you need us!
Luv sarah xx
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| « Last Edit: Aug 10th, 2004, 3:27pm by synergy2120 » |
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Margi
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Re: No more Enabeling !!!
« Reply #2 on: Aug 10th, 2004, 3:37pm » |
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Wow. 
Both excellent posts, ladies. Renee, I...uh...honestly am at a loss for words. I can't argue with you on any one point. I really hope your man realizes what he is about to lose. I hope more than just the supporters here read your post, Renee - it really is an eyeopener. Very well said. You're a courageous gal.
(Really makes me want to go hug my husband for being such a good boy and putting up with my pushing him all these years and learning to work with me to help him find some relief. THANK you, Michael.  )
And, Sarah - I've been reading your posts. You sound like an awesome supporter. In answer to your 'how do you chill' post - for me, it's candle lit bubblebaths and a glass of chilled white wine.  Keep up the awesome supporting, Sarah! Marc is blessed to have you.
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NYRenee
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Re: No more Enabeling !!!
« Reply #3 on: Aug 11th, 2004, 12:12pm » |
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Hi everyone:
This morning I re-read my post...boy I sure am resentful aren't I? Sorry about that. Yes, I am feeling resentful because sometimes I feel like I want him to get better more than he does...and although it sounded like it in my post it's not all about the sex (well maybe?  ) I'm resentful because I want to get married and have children, kind of hard to plan a future like that under the circumstances. But I don't want to give up on him or us either !
Like everyone else here, whether you are a sufferer or supporter, we all want our life’s back. We all want to be able to go do activities with friends and/or family without having to plan around a cluster attack, we all want to be close to the ones we love...sometimes just being held by my man is satisfying enough for me, ...but when he is in so much pain he doesn't want to be hugged or held himself...what do you do?
It hurts to see him so much pain, it hurts not have a physical relationship with the one you love, it hurts when he uses cruel words, it hurts that I can't help him, it just plain hurts.
I will take Sarah's advice and back off on the food thing. But honestly he's on his own, for example he had a horrible day at work yesterday he bought a 12 pack of beer, he didn't drink a single one, but he still went and bought it with the knowledge it will cause him horrible pain...am I to sympathize with that?
Margi, I don't know how courageous I truly am, other than letting him know that I will not tolerate the verbal abuse any more. The excuses are over. He truly is a good man, he was not like this when I met him otherwise I would have dropped him day one. But I don't deserve to be treated like that either.
Thank you for the advice and encouragement, I will need it in the days ahead.
Renee
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synergy2120
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Re: No more Enabeling !!!
« Reply #4 on: Aug 11th, 2004, 12:23pm » |
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And just remember that we are not just supporters of our own partners/children we are also here to support all you other supporters as well.
Without the other supporters i have found on this site then i would of surely gone mad - and ive been here for a week or so!!!
This truly is a wonderful site and im glad i found it. The funnies and jokes place really helped us last night. MArc had a bad night and my daughter ended up being taking to my mums - to cheer marc up after the beast calmed down, i logged on and told him all the jokes - it really cheered him up (and me)!!!
Now im just enjoying the rest from emma but im missing like crazy 
Love you all sarah xx
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E-Double
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Re: No more Enabeling !!!
« Reply #5 on: Aug 11th, 2004, 12:29pm » |
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You my dear are a tough cookie!!
As a Ch sufferer it is so very important to have a supporter that will kick you in the ass once in a while.
I certainly have a phenomenal supporter who found this site and got my suffering depressed ass to a neuro!!
Get him over here and do what's best for you first and foremost!!! You are already doing a kick ass job with him!
I still am amazed that Joanna (my fiance') still wants to marry me. November is around the corner and I'm still in cycle....
Hang in there Renee.
Eric (from NY)
P.S. Where are you from ? maybe we can meet so your man can atleast know that he's not alone and neither are you 
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| « Last Edit: Aug 11th, 2004, 12:30pm by E-Double » |
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I can't believe that I have to bang my
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miapet
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Re: No more Enabeling !!!
« Reply #6 on: Aug 13th, 2004, 8:57pm » |
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*hugs* Not that many months ago, I was saying: I just want our life back . . . The support I received from the people on this board was awesome! And the support and information from both this board, and Clusterbusters is what brought me (us) through the darkness.
I'm so sorry you are in that boat right now. It does get better, but you need to take care of you too . . . it makes being a supporter easier. In the paraphrased words of a great supporter (Jackie), there's nothing more sad than a run-down supporter (sheesh, it sounded better when she said it *g*)
For the chill *g* . . .I take my daughter to a movie and laugh (even though she tries to shush me *g*) or I go walk in the park . . .but I think I'm going to go for the bubbles and wine now *G*
*positive light and energy*
miapet
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Woobie
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Re: No more Enabeling !!!
« Reply #7 on: Aug 18th, 2004, 3:38am » |
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Jackie
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Re: No more Enabeling !!!
« Reply #8 on: Aug 18th, 2004, 9:19pm » |
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Wow !
Some great posts here. You all are doin' us proud !!
Love to you all,
Jack 
Oh.....yep, Miapet. Worn out supporters are sad because they aren't worth a crap....are they 
We always need to remember Margi's supporter R & R...
bubble bath with wine and candles.... 
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Zephrah
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Re: No more Enabeling !!!
« Reply #9 on: Apr 24th, 2005, 8:01pm » |
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I think this thread needs resurrected. I'm a supporter too. I think that every sufferer that is lucky enough to have a supporter has a responsibility to do everything (within reason) they can to NOT cause and prevent the headaches. Its very selfish of some people not to take care of themselves, imagine if your S.O. (significant other) didn't brush their teeth and then they still expect you to kiss them. In Renee's case, her SO needed a psychologist and then a neurologist. Make sure the HA's are what you're fighting, not the depression! Take care everyone and stay strong! 
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