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Topic: Help...how do I cope with my partners CH (Read 1476 times) |
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Shedz
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Help...how do I cope with my partners CH
« on: Nov 26th, 2006, 3:29pm » |
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Hi, my partner has CH they start up about now and carry on until March/April. I have seen him trash the front room up in sheer pain, bouncing literally off the walls like a rubber ball. He has been like this for 8yrs although he was only diagnosed 2 yrs ago. It's like trading on eggshells not knowing what to do and feeling like whatever I do is not right for him. How do all you other carers cope  Debs
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I push my fingers into my eyes, It's the only thing that slowly stops the ache, But it's made of all the things I have to take, Jesus it never ends it just works its way inside, If the pain goes on, I AM gonna make it.... http://www.youtube.com/watch?v=Xps7AM8HbjE
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LeLimey
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Re: Help...how do I cope with my partners CH
« Reply #1 on: Nov 26th, 2006, 3:48pm » |
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Hi Debs, Sundays are a bad time to get replies but rest assured you will get ton's over the next few days! I'm in the unenviable position of being both a sufferer and a supporter as my little son has CH too.
Personally, I think supporting is the hardest role there is as to see people you love in that sort of pain and be able to do nothing and even be afraid of it is unbelievably hard. You have nothing but my admiration.
I've tried to tell Paul some stuff already but I'm fearful of overloading with info all at once.
You can help a lot with either ice packs or bags of peas (wrapped in a tea towel!) on both the back of the neck for some of us and the affected eye side of your face. Not everyone can take it on the neck but it helps me and equally some people prefer heat. Try taking him outside into the night air and see if the cold helps him. If not he might be better off with heat packs.
Redbull or el cheapo equivalents are brilliant if you chug them at the start of an attack. It tastes like - um foul but it works. caffeine is a vaso constrictor and taurine which is also in both red bull and the cheap versions enhances the effect. In a hit the blood vessels on the affected side of your head swell by up to twenty times their normal size which is why they're so excruciating, you need to reduce those blood vessels to reduce the pain which is also why normal pain killers and even opiates just will not work hon. Red bull (its not so vile if its cold) swigged as quickly as he can get it down his neck is brilliant or strong coffee can be good too depending on preference. Red Bull is portable too so thats a bonus. I've recommended him some prescribed meds, I'm trying to help you with coping techniques so you feel less useless (I know I do)
We'll all help BOTH of you as much as possible, supporters are worth their weight in rubies around here and I'd like to thank you most sincerely for all you do. We DO appreciate it even if we don't always show it as much as we should
Margi and Jackie are going to be invaluable to you in teaching you how to cope, you'll learn from the experts and veterans of supporting with those two wonderful wonderful ladies.
much love to you and a lot of empathy
Helen
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Shedz
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Re: Help...how do I cope with my partners CH
« Reply #2 on: Nov 26th, 2006, 4:09pm » |
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Hi firstly both Paul and myself would like to thank you for all your help, Paul has been on the phone to Roy and he has said the same as you that he is there for Paul both day and night. It is so hard to know what to do for the best but I will put into action what you have told me and try and have strong coffee on hand plus try and get a special ice pack that I can keep in the deep freeze  It good to know that you are there especially when it is all going pear shape. thanks for your help I sure I will be in contact soon!!!!!!!!! Debs
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I push my fingers into my eyes, It's the only thing that slowly stops the ache, But it's made of all the things I have to take, Jesus it never ends it just works its way inside, If the pain goes on, I AM gonna make it.... http://www.youtube.com/watch?v=Xps7AM8HbjE
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LeLimey
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Re: Help...how do I cope with my partners CH
« Reply #3 on: Nov 26th, 2006, 4:12pm » |
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Debs anytime hon. I'll im you my number as well if you like, I'm always happy to help and if you DON'T ring me when you're scared or worried even if its 2am I'll - well I know where Walsingham is (Thank you St Veronica's  )
We're all in this same horrible boat and we'll help you all we can and that is a promise (um.. and a threat actually if Roy's been blabbing LOL)
Check your im's in a couple!
Helen
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Dape
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Re: Help...how do I cope with my partners CH
« Reply #4 on: Nov 26th, 2006, 4:53pm » |
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on Nov 26th, 2006, 3:29pm, Shedz wrote:| How do all you other carers cope |
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Well my supporter uses strong rope and a ball gag......
Ohhhh you mean for CH don't ya 
Hi Debs,
Helen summed it up perfectly and in my opinion it is so much worse to watch someone get hit. I am not that far away from you either, i am only just down the road from Roy and still haven't met him which i intend to rectify shortly. I am thinking maybe a mini meet and greet so that you can both get to meet some other sufferers and supporters as the feeling you get is like no other, well maybe 1  .
I will also IM you my number and just like Helen & Roy it can be rung at any time day or night by either of you to speak to myself or my wonderful and supportive partner Julie.
BTW i have a warped sense of humour if you hadn't already guessed.
Dape
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LeLimey
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Re: Help...how do I cope with my partners CH
« Reply #5 on: Nov 26th, 2006, 4:55pm » |
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Dapey me old mate I was just talking to Debs and Paul about meeting up, you me Roy and them, when will Julie be up for it?!
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Dape
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Re: Help...how do I cope with my partners CH
« Reply #6 on: Nov 26th, 2006, 5:00pm » |
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when ever i tell her i wear the trousers just dont tell her i said so
You let me know hun and we will be there well as long as we aint in the delivery sweet, unless of course we have a giving birth party
Dape
PS: dont beleive anything she says about me i am nice really lol
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mrs mac
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Re: Help...how do I cope with my partners CH
« Reply #7 on: Nov 26th, 2006, 8:27pm » |
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hi there!!!
i am another supporter, (who have met Dape and Helen) who are both great by the way!!!
anyway, with my hubby, he likes me to get him his ice pack, and just to be close by!!!
there isn't really much we can do for them while they are having their attack, but we can just be there for them, and give them a huge cuddle once the attack has subsided!!!
Margi has a great thing that she posted here about coping techniques, i am sure she would post the link again, if not i will find it and post it on this thread for you to see!!
I personally think it is great and may go a long way to help you cope with things!!
but please come and visit the board here reguarly too, as there are a lot of people here who will give you all the support and advice you need!!!
this forum is great for that, we are all here to help everyone else!!!
i hope you do get the chance to meet up with these two nutjobs lovely people, because i know they will do every thing they can to answer any queries you may have
take care
sandra xxxx
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