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Title: need to be a better supporter Post by desperate on Jul 2nd, 2004, 4:38pm hi I have never written on here before although have visited a few times as my partner suffers CH and as of Wednesday was officially diagnoised as chronic. I just need a kick up the arse , I am struggling supporting him at the moment .He has suffered with CH for 5 years now but the last year has been getting gradually worse. I feel awful for feeling like this when i know he's in pain i can't even begin to imagine but i am just so fedup ratty angry and well just depressed and miserable i guess(happy little soul!!) i am 7 months pregnant and have a just turned one year old and a man in a severe cycle crying out for my attention but i just can't bear it. i don't hate him althoug it's coming across that way i just want life back between my daughter waking up hearing him banging and wailing in pain in the night running to get ice whrn i can waking at six with the baby i am just exhausted . there are days when i can't even face talking to him as all h can talkabout is the headaches and it just makes me so angry that he can't see how i exhausted i am .......... i know that's selfish of me as all they can trhink of is their headaches . we went to see a specialist on wednesday and both me and his dad thought it was really positive and the doc said there were loads of options of drugs he had not even been given and he had a long term plan he didn't say there was nothing he could do but he walked out miserable and still hasn't been to the doctors to get the drug the doc suggested???this is making me mad as he doesn't seem to want to help himself he's just shut himself in a room smoking all day and reading tring to avoid a headache (which i understand) but i don't know how to help anymore i can't give him the time he needs and my patience is thin as i am so tired and the constant snapping shouting blaming namecalling is wearing me out . i know he means none of it but sometimes it's just so hard to see what purpose you actually serve and i am even questioning my whole relationship ?? oh god i am on a downer somebody please kick me and tell me to stop wallowing or just tell me you've had periods like this as you all sound like saints and my partbner deserves more than this. yhanks for letting me vent |
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Title: Re: need to be a better supporter Post by pubgirl on Jul 2nd, 2004, 7:05pm Check your messages, help is out there and much closer than you think! Love Wendy Hope I can meet you in Wales in September |
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Title: Re: need to be a better supporter Post by firebrix on Jul 2nd, 2004, 7:13pm Its all cool desperate! Its just a very grey day and it will pass! Stop beating yourself up - this is no picnic you're dealing with and it takes a wee while to learn the tricks of dealing with CH. You are tired out hon! When we get this tired we see things that we wouldn't usually see, interpret them in odd ways, and react in different ways too. You've done the right thing coming here. There are many people who will support you and help you through this. There is a limit to what you can do. None of us can be everything to everyone all the time. We need to take stock of things and work out what we can do and when and accept that it won't all get done. There's always tomorrow. Life with CH is a bit different from life without, but there are ways we can make improvements. Have you asked him what he wants you to do when he's getting hit? Talk about it, form a plan of attack and then just stick to it. If he wants to be alone, leave him alone and do something with the little one. Take a walk in the fresh air, see a mate who makes you laugh, go to a movie or just take time for YOU. When we have a plan we save lots of time....... If he won't pick up the script, maybe you could do it for him? Sometimes all we can do is advocate for our partners - and pick up the pieces they can't quite get a handle on. WE are SO LUCKY we don't have CH!! Can you imagine what its like for him? He wants to be your Mr Right and finds these ha.s have controlled him and what he wants to do. Help him with this any way you can. It'll all be positive. Just might be that after struggling so long with the pain, he is reluctant to try a med that might help him - like he's a little afraid he'll get his hopes up only to have them dashed once again. Gentle encouragement and unconditional support is the way to go if you can get your head around that. Its not always easy tho', especially when you have a baby who needs so much of your time. I think most of us have crises. Its the way we deal with them that matters. Try to accept that we are free at all times to go back, re-program and try again. Sometimes "I'm sorry - I lost it but I really do care" is all it takes. Have you suggested he visits this site? That might help too knowing he's not alone with his nightmare. (And while he's online, you're free to do something for yourself aware that he's in good hands.) I'm certainly not going to kick you! I do, however, offer any help I might be able to give. IM me any time. There are lots of amazing people supporting CHers here and soon, they will call in and give you their thoughts. I know how urgent it can be waiting for a reply which is why I did altho' I wonder if what I've written is of any help. Hang in there babe. Help's on the way! Meanwhile try Mopar's trick when you are stressed and feel messed up. It helped me!(And I'm a total nutbar!) Find something pretty/good/inspiring to focus on. Take three DEEP sighs of relief. Sure it will feel like you're faking but keep trying. It kids the brain into feeling better anyway! Repeat this 'til you feel a little better and then go do something YOU want to do. You might be surprised! Its not all bad. The only thing we can be sure of in life is change. Things seem bad one moment and good the next. Perspective is the key. We must make an effort to banish negativity. Empower ourselves to be positive. I wish I had magic word to make you feel hapier right now. But believe me, this day will change into a better tomorrow - if we let it. Big brikki hugs to you! firebrix |
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Title: Re: need to be a better supporter Post by firebrix on Jul 2nd, 2004, 7:17pm Well! Look at that! Wendy was right on to it! Heaps of support for you and your man! AND close to you! Down here in Middle Earth we feel a little isolated but it looks as tho' you have already made a friend who will understand. Life can be magic More hugs firebrix |
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Title: Re: need to be a better supporter Post by miapet on Jul 3rd, 2004, 1:36pm desperate . .*big supporter hugs* . . .i know it's a hard, and sometimes we feel at our wits end, but we can do it! Some of the best advice I received: take care of yourself, a tired out supporter can't be a good supporter, and we have to take care of a lot of stuff; enjoy every p/f moment you have; and, discuss your plan when he is not having a h/a (as posted previously). When you have a plan, it makes it easier. Being their advocate means more than anything. When under attack, even though they think they are thinking clearly, there is so much going on, they really can't do everything. It takes so much energy just fighting. Become as educated as possible, and start making the hard decisions. I can't tell you the number of times it would feel frustrating . . .we would decide to go to a doc, and then walk out or cancel . . . .I know now, he just couldn't face another let down. We can do this . . .You can do this. It does get better. We learn what works for us, and we do it. Oh, and don't feel bad if he wants to be alone . . .it's not because he doesn't want your help . . . D told me, it's just easier to do it alone sometimes . . .in fact, he told me that in some ways harder to do it with me, because he doesn't want to hurt me or see me hurt, but in many ways it's also easier . . .I have a clear head, and can whip the medical professionals we see into shape. We get what we need, and we get it pretty quickly. (gosh, the nurses and docs didn't know what to do when I called and bugged them with: this is what we need, where are we on it? Okay, then what can I do to expedite this? I have called more people then they could imagine!! But, we got what we needed! And now, if I call, it's all about, yes, whatever you say *L* (I don't know if they really trust my judgement, or if they just want me off their backs!!!) If you ever want to vent . . .ask questions . . .or just anything . .feel free to IM me . . .I check this board daily . . . Take care of yourself, enjoy your little one . . .and the new one on the way . . . We are all here for you too . . .just as everyone is here for us . . . *positive light and energy* miapet |
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Title: Re: need to be a better supporter Post by desperate on Jul 4th, 2004, 4:13pm HI All Just wanted to say thanks for all your advice ,you'll be pleased to know i am already feeling better ! think tirdness and pregnancy hormones took a firm grip of me the other day oops ;) Still all think your super human though but the headaches have eased up the last two days down to 4 yipeeeee so soon i can have my man back i guess i'll have to thik of it as a long distance relationship and sometimes he goes away and i miss him like hell but at least absence makes the heart grow fonder ;;D it's been really nice coming here and having your support and not having to worry my partner anymore than i need to right now he's got more than enough on his plate so once again thanks all and look forward to talking to you again |
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Title: Re: need to be a better supporter Post by don on Jul 4th, 2004, 11:36pm Quote:
Your not wallowing, your venting and you need to do that. I imagine being a supporter of a CH sufferer is a lot like being the spouse of an alcoholic. You dont hate the person with the disease, you hate the disease. If you dont vent, all the hostility gets directed towards the person rather than the condition. Your doing fine. |
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Title: Re: need to be a better supporter Post by miapet on Jul 5th, 2004, 2:02am yeah! what don said! |
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