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        Supporter's Corner >> Supporter's Corner >> Supporter New to site  HELP!!!!!!! 
        
(Message started by: cavegirl on Oct 16^th, 2005, 7:59am)

Title: Supporter New to site HELP!!!!!!!
Post by cavegirl on Oct 16^th, 2005, 7:59am

[smiley=huh.gif]
My boyfriend introduced me to this site,at the moment I have a million emotions / questions etc whirling around in my head and stomach. He is the first person in my entire life that I have ever wanted to spend the rest of my life with and I love him absolutely infinitely. I know the pain he suffers is indescribeable and I feel so so useless cos nothing I can say or do will help. I feel totally isolated cos he knows that there is no way other than me suffering CH's too, that I will ever know truly what he is going through and i feel very selfish by saying I find it hard too cos I'm not actually feeling the pain. I just hope he knows I will always be there no matter what and for always I know he worries about how he 'changes' when he has an episode.

Title: Re: Supporter New to site HELP!!!!!!!
Post by LeLimey on Oct 16^th, 2005, 8:09am

Hi Cavegirl,
I'm sorry you've had to come here, but I'm glad you have! There is alot we can do to support both you and your other half. Margi and the other supporters here will be able to give you loads of advice on how to cope, as a sufferer I can understand your boyfriends side of the equation better although I have a child with CH so I do know how hard it is seeing someone you love in this torment.
Does he post here, does he post on OUCH UK at all? What meds is he on at the moment? We will do all we can to help you. I'm not far from you, I only live about an hour away so if you ever want to chat or meet up just IM me okay?
Read all you can and ask all the questions you want :) The more you know the better you will feel.
Stick around, this place is a lifesaver!
Helen

Title: Re: Supporter New to site HELP!!!!!!!
Post by cavegirl on Oct 16^th, 2005, 8:46am

Hi thanks for your reply, but first of all I am so so sorry your child is having to go through this, in my ignorance I didn't know children could get them. Ref medication, he's not really on anything at the moment. He's had them since age 21 (now 35) and self diagnosed as GP not very helpful and wouldn't prescribe much without being seen by Neuro Doc, he did recently get nasal spray but after effects almost as bad!! When he was chronic they seemed to disappear totally but now they're episodic they seem 2 last much longer. We just filled in application for research trial on oxygen so hopefully he will be accepted. Work do not recognise at all the seriousness of CH even though he has printed stuff off for them to read. 1st time he saw site he cried cos he finally found people that really understood his pain and believed him - he wasn't going crazy after all!! would be grat to chat sometime need to get IM set up - difficult cos on works laptop and is restricted!!!

Title: Re: Supporter New to site HELP!!!!!!!
Post by LeLimey on Oct 16^th, 2005, 10:03am

Right in the top right hand corner of this board is an instant private message facility, I'll im you my # for if you ever need it!

Title: Re: Supporter New to site HELP!!!!!!!
Post by Dads angel on Oct 19^th, 2005, 7:08pm

First things first. RELAX! The worst thing for you is to let the worry bring you down. It'll just stress you out. Second, you can do something. It makes me kind of mad when people say we can't do anything. I've said it too. We do alot as supporters. Maybe not during the hit, but before and after. Running around getting ice and hooking up tanks. It's alot. Walking away is ALOT. It's probably the hardest thing I have to do. Letting my dad deal with it by himself. Reminding our loved ones that we love them, and we admire thier strength is enough. Hell, staying by them is enough alot of the time. CH is enough to scare anyone off. You've done so much by announcing your alliegence to him.
Lastly: Be strong and have hope. One day we will have a cure for CH.

Lots of vibes to you and your sufferer.

Stephanie (aka. the warden)