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(Message started by: aprilbee on Sep 22nd, 2003, 9:23am)

Title: Help for a supporter
Post by aprilbee on Sep 22nd, 2003, 9:23am
I sort of have a problem.  My mother has always been and is extremely worried about me suffering with CH.  I have told her many times to log on here and talk with other supporters to ease your fears.  It seems she knew a woman when she was growing up that had migraines and this woman died at an early age and she worries the same is going to happen to me.  I've tried to tell her that while there aren't many of us, we all have the same symptoms, and if any thing it makes us stronger people.  
I'm just not sure how to get through to her, she seems to want to hang on to her fear instead of coming here and dealing with it.  In her defense, she's lost 2 sisters to car accidents, her father and brother to alcoholism, and another brother to cancer, she's dealt with alot.  I was just wondering if there were resistent supporters out there (resistent in coming here, not support at home) and when they did, did it help them understand?  Did it ease their fears or questions?
All suggestions welcome!!  Thank you!   :)

Title: Re: Help for a supporter
Post by Margi on Sep 22nd, 2003, 9:31am
Hi April,

Of course, we'll never know how many 'resistant supporters' there are out there, but I hope we've helped some of the ones that finally did come to us.

Even if your mom doesn't want to register here, she can still read what's been written - send her the link to the website, and tell her she can be a guest and still have access to everything.  Point her to the OUCH website and then onto the Family Services Team (the link is at the bottom of my message here).  We've written a few pages there to help supporters know that this isn't a fatal disease and that the pain does end.  

Please feel free to give her my email address - moxie_miss@hotmail.com.  I've talked to a lot of supporters over the years and sometimes they feel better talking one on one instead of on a public forum like this.  I don't mind helping her to understand what you go through.  OK?

You're a good daughter, to worry about your mom like this, April.  Thanks for telling us about her.

Title: Re: Help for a supporter
Post by aprilbee on Sep 22nd, 2003, 9:47am
Thank you so much!!  

Title: Re: Help for a supporter
Post by judyw on Sep 22nd, 2003, 10:12am
Morning...yes, Margi is right and if she can't reassure her, no one can...I can understand her feeling apprehensive with that history of losses...my suggestion as could not get my mom to come to the computer was to copy some of the more interesting information and even messages to share with her...she has her own folder now and still will ask about different ones...how they are doing, etc...Has made her more a part of my world and I think helps...I had them as a child, and she has had to go through the questions as whether she was a good mom...not realizing what was going on...quite a history through the years...and I vote she did the best she could with the medical guidance she was given... :)

Title: Re: Help for a supporter
Post by aprilbee on Sep 22nd, 2003, 10:24am
100% agree with you and that is what I am in the process of doing right now, I've also had them since I was 12 years old and she has had to watch me grow up with them and is only now able to voice the concerns, since she had to be "strong" for me as a child...I hope some of these stories and print outs help her.

Title: Re: Help for a supporter
Post by TxBasslady on Sep 22nd, 2003, 10:52am
;)

Hi April,
Well, it is tough being a Mom and not worrying about things going on with your kids.  She has suffered thru some traumatic losses of her family.  That's really tough to lose parents, brothers, and sisters.

Judy made a great suggestion.....Print out some of the threads.  My hubby is stuck in the "worry" mode about me.  I have printed alot of the questions and responses on here from members.  He does read them, and we talk about alot of the probs that some have here.  Some of the stuff depresses him....especially when he sees how some here have suffered for so many years.  However, he is quite impressed by the strength of the supporters.  And, he certainly is in agreement that this site is a God send.             8)

Family is an important part of CH.  I am very thankful that I found this site.  Not only has it helped me to deal with my CH, but I do feel that it has helped my family to understand it more.  And this site has given me a bonus...now I have 2 "families".            ;D

Best wishes to you, April.....

Lotz of pf vibes sent your way                  ;)

Jean

Title: Re: Help for a supporter
Post by BarbaraD on Sep 22nd, 2003, 11:12am
By all means get her "involved" in this MB and with Margie. Margie has been a supporter for more years than she'll admit to being old and has built up a great site for helping supporters understand how "we" cope and how they should deal with "our" problem.

It's hard on families (we can't understand their side any more than they can understand our side).

When I first came down with CH, my mother wanted to "pat"  and soothe me (as was her "way" to deal with things). It was all I could do NOT to scream and lash out at her, but thank goodness I didn't. She was trying to help. I wish this MB had been around then or that she was around now.

Good luck.

Hugs  BD

Title: Re: Help for a supporter
Post by Cerberus on Sep 22nd, 2003, 5:00pm
NO FEAR VIBES GOIN OUT TO APRILS MA, WHO'S WITH ME?

I won't kill ya but you'll wish it would.......ain't that a bitch?


Ramon

Title: Re: Help for a supporter
Post by Miss_Deleny on Sep 22nd, 2003, 7:17pm
I will say from my own point of view ... I was very scared to come here and scared of this "CH" thing that Christopher had. He found this site and kept wanting me to come here and look it over as well as join. It took me a while but when he said that it would mean alot to him if I did, I did! I "lurked" around for about a week or so before joining in. Just by observing and reading the posts and other information gave me the courage to post.

This site has been a blessing for both of us! Since coming here, I have a better knowledge of what he is going through and how to deal with it myself.

I will never know exactly what he feels when he gets an attack but I know that we can get through them together. The support here for him as well as for me has helped us deal with it better .. and knowing that there are others out there that goes through the same thing helps too.

I agree with above .. if you cant get your mom to come here, bring the information to her. I have talked to my mom about what Christopher goes through. She cant access the internet right now so I give her the information the easiest and best way I can ... both by my telling her and by sending her information.

Wishing you PFDaN's,
~April~

Title: Re: Help for a supporter
Post by Ree on Sep 22nd, 2003, 8:35pm
I would also love to help counsel your mom if she needs to talk to another supporter... I recently had a scare with a girl friend that had brain surgery... I visited her to find that she had an anurism and didnt want to tell me because she knew Dave was in cycle and probably thought I would have the same fears as your mom... my email is Ree16angel@aol.com... Good luck and tell her we all have your back...love to you Ree



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