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        Supporter's Corner >> Supporter's Corner >> Charlie's wife Jolene
        
(Message started by: jcmquix on Jul 16^th, 2005, 1:13am)

Title: Charlie's wife Jolene
Post by jcmquix on Jul 16^th, 2005, 1:13am

Hello, been reading alot on this site, thank you all for this site, it really helps Charlie alot, I feel so helpless, nothing I do helps him, though he says it helps when I do things for him, I can see that it doesn't. he locks himself in the bathroom for hrs. & it scares the shit out of me, cause I really don't know what to expect, or if he is ok!!! I get so mad at myself for not being able to do anything for him or to be able to help!!!! the meds don't work most of the time, he just got h2o here, seems to help a little, we have so many meds. i feel so bad for him, he is trying everything. I,m scare he's going to get sick taking so many things, living in hell, THATS A UNDERSTATEMENT WITH THESE CH'S !!! the way Charlie looks when he gets these CH'S scares me, some times I think he's going to drop dead on me!!! any info is a help. Thanks & Thanks again for being here for him to talk to. it helps with him knowing he is not alone & to talk to other people who are going through the same thing, I feel for all of you that has to go through this, I see what it does to my husband! Lots of Prayers & Love to you all. JOLENE

Title: Re: Charlie's wife Jolene
Post by DennyM on Jul 16^th, 2005, 4:56am

G'day Jolene

Brian's in remission at the moment, so I'm feeling free to lend whatever support I can to fellow supporters.

Yes I do know what you're going through and since I was pointed in the direction of this board I feel immensely reassured that there are so many caring people with whom we can share our horror stories. It must be a tremendous help to put it down in writing and get it all into some sort of perspective.

It's really scary that Charlie's taking so many meds. It might help you to go and discuss them with a pharmacist. During one of Brian's more distressing cycles (they're all distressing - but this one was a doozie), his neuro lumbered him with a veritable pharmacopia and neglected to inform him that one particular med was not to be taken concurrently with one he'd been prescribed on a previous visit. Brian came very close to ODing on these Ergotimines and it was only a horrified pharmicist who rescued him. Since then I've kept a very close eye on his meds - made it my business to find out everything I can about side effects and which can be safely taken with what.

Hang in there, Jolene. No matter how helpless, upset, frustrated or angry you may feel - you really are helping Charlie just by being there for him and understanding what he's going through. He needs you, and there is no need for you to feel alone.

Love & Blessings to you both

Denny

Title: Re: Charlie's wife Jolene
Post by sassy_lady on Jul 16^th, 2005, 9:49am

Hello, this is Charlie's wife, got set up today, Thank you for the info, I WILL BE CHECKING WITH THE MED DR., going to take everything to him to look at!! Thank you Very Much!!! Lots Of Prayers & Love Your Way!!! Jolene

Title: Re: Charlie's wife Jolene
Post by firebrix on Jul 16^th, 2005, 6:21pm

Greetings from New Zealand sassy_lady and a warm welcome!

You'll be surprised in time when you realise just how much you really DO help Charlie, Jolene, even if it doesn't seem like that to you right now. A calm and gentle supporter (who must also have a spine of steel) who puts his needs before her own is probably THE most valuable asset a CHer can have. If she can also help him to make the transition from the pure torture of those headaches back to life in reality with a cuppa,a smile and a gentle nudge in the right direction she will also help him to grab a little fun, life and laughter when the h/a. has passed. It is all too easy to live the headaches and forget that life continues on all around us; sunny days can waste into darkness and if we allow it to, those h/a.s can rule our lives. Good supporters will try to ensure that the pain free moments are as joyful and happy as possible for there is no reason our CHers need to live those h/a.s 24/7. This is something we can really excel at if we practise really hard!

Another thing supporters can do is research. Get as informed as you can be and read everything you can get your hands on regarding CH - this will ensure he will not suffer from bad reactions to meds should you get a neuro who does not understand CH. Advocate for him when he's too ill to do it for himself and always check out new meds for side effects so that if they occur, you're informed and have some idea what's going on. When people tell him "I had a ha. like that once" or "take 2 codeine and go to bed in a dark room", be the one to explain it to them - any way you like - use your imagination!! (I had great fun with this one!) He already has enough explaining to do.

I can explain why he goes to the bathroom and locks himself in. CH is not only painful, but it can also appear a little undignified (to the sufferer) and we must allow them the privacy they require to maintain their dignity. Be aware that he's suffering the worst pain known to man and allow him this small thing as there's little we can do when the h/a strikes. It's after it's over we can really shine. I wouldn't want anyone to watch me in agony and can understand the need for privacy. He WILL be ok - when the h/a has gone. Truly!

Read all you can about O2 - water helps if he's dehydrated, but O2 is a whole lot better at aborting those h/a.s and used correctly, saves a lot of pain and other meds. There's a button on the left of your screen on the Home page which tells y'all about it.

We were all scared at first, just like you, but in time we learn that these h/a.s do not kill, even if it looks like they will. We learn to be less afraid and more empowered. We find strengths we didn't know we had. Our relationships can improve rather than suffer and we become better humans for making small allowances, showing greater tolerance and generally trying to help our CHers. It means moving a little from our comfort zones but that can only be a good thing! Of course we must not cosset them either nor be like a fiercely protective mother - we are their helpers not their controllers.

There are some awesome supporters on this board who helped me and will help you. All you have to do is ask.

Hang in there Jolene. You're doin' better than you think you are! Betcha. Kia Kaha! (Be Strong!) IM if I can help - any time.

The brikki wishes you both happier days........and Pain-free days and nights.

Title: Re: Charlie's wife Jolene
Post by jcmquix on Jul 16^th, 2005, 10:36pm

this web site is a TRUE BLESSING from the GOOD LORD & truely filled with HIS ANGELS !!!! BLESSING ON THE GOOD PEOPLE WHO MADE THIS HEAVEN ON EARTH, my sweet husband has had the CH's for many years, yet it's only been a coulpe of years that we were told that the h/a were CH'S, I have gotten more info on this site in the last 2 days then I have in all the years of going through these CH's with Charlie, & talking with dr's, & the support here for all party's is just alsome. I will say that Charlie is also more at peace since he has been on this site talking & getting all of your support & understanding, & for know he is not alone, it give me peace of mind know you all are here for him too, from what I have read & learned from this site gives me as a supporter the info & understanding of what we are fighting, I still have some to read & take notes, THANK YOU ALL & BLESSING & PRAYERS TO YOU ALL !! MUCH LOVE & UNDERSTANDING
LOL JOLENE