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Supporter's Corner >> Supporter's Corner >> I don't have a clue - new here need advice
(Message started by: Peppermint on Aug 30th, 2002, 8:59pm)

Title: I don't have a clue - new here need advice
Post by Peppermint on Aug 30th, 2002, 8:59pm
I am brand new here and have been reading different postings from angry to sad to hopeful and inspirational.  I feel what I am asking may be so ridiculous in light of it all.   :-[ But here goes...
I've met someone in a very unconventional way, online, which I know some people may laugh at.  We have a lot in common and and he has told me that he has cluster headaches.  He asked me to visit this site so that I can understand.  I had no idea and, well, I have been sitting here with a lump in my throat and tears.  :'( We have been talking about getting on a plane to see eachother and when we talk on the phone I feel him wanting to say something more but holding back.  
I have never spoken with anyone and felt so connected, its like when you finish someone else's thoughts and sentences.  I have to admit that after reading this I am scared but not enough to back off from getting on that plane soon.  Its practically halfway across the continent from where I live so this should give you an idea of how I feel.  He's had a few episodes within the couple of weeks and I know he's suffering when we don't talk because he tells me he's had an episode.
:(All my life I've looked for someone who I feel so at ease with and connect so well with.  I just need to know how I can be supportive without making him feel that I am pitying him.  I do not want to be that kind of person to someone I feel may be my soulmate.  I'm scared.  Please don't make fun, I am dead serious.  Thanks for any advice.

Title: Re: I don't have a clue - new here need advice
Post by Peppermint on Aug 30th, 2002, 9:49pm
:(Okay, I feel terrible now for having posted the above message.  I guess this kind of thing is hard to swallow and is trivial.  I will eventually get on that plane, come what may.  I just hope that I can read enough on this website to maybe help me be a supporter, and a great one, when and I say WHEN the time comes.  
Sorry again.  

Title: Re: I don't have a clue - new here need advice
Post by Peppermint on Aug 31st, 2002, 9:15am
:-/Thank you so much.  Both of you for responding, I wa beginning to think I offended you all.  
I spoke to my friend last night.  He went out with his friends and came back extremely furious and upset.  He scared me because I have never heard this side of him.  He was threatening to do something rash and i tried talking him down from his anger.  He said his so-called friends did something to upset him, but wouldn't say what.  I don't know exactly what happened because he was too angry to say.... I was very upset because he wouldn't even talk to me on the phone.  I just know he needed someone to talk to because he didn't sign off online.  I kept him talking because he said he had a shotgun.... and ...well I think it sounded uncharacteristic of him..so I don't know..  I hardly slept last night worrying.  He tried to convince me then that he was ok.   He's been having attacks recently and I know he was just starting to feel better earlier last night.  
I think I agree with waiting.  I wanted to ask you all if an impending attack would induce violent overreactions or is it just that he's always feeling all this pain and can't take it coming from elsewhere.  He is a very sensitive, humorous and sweet person and last night SEEMED the exception to the norm.   You are right, I don't want to be the codependent, I want to be supportive.  I don't know, I am very torn....please someobdy talk to me.   :'(

Title: Re: I don't have a clue - new here need advice
Post by Margi on Sep 1st, 2002, 3:14pm
hi Peppermint,

it's not that we're ignoring you, it's just difficult to instruct someone how to be a supporter.  we just do it.  best advice i can give you for how to help him is to ASK HIM what he wants you to do when an attack hits.  does he want you to bring him his meds/water/ice or does he prefer to be left alone....make sure you ask him when he is painfree, he won't be much of a conversationalist when he is getting hit, trust me.

however, if you feel he truly IS considering suicide, please urge him to talk to a professional.  suicide HAS been discussed here lots and there are lots of organizations out there who can counsel him.  don't take that task on yourself, ok?  (I mean unless you make your living as a suicide counsellor!)

again, sorry - we really ARE listening - you just haven't really asked us anything specific yet.  and PLEASE - if you're going to go meet this guy, and you already KNOW he has a shotgun (  :o  ) and, it sounds like, a bit of a temper, PLEASE BE CAREFUL!!!

Title: Re: I don't have a clue - new here need advice
Post by Peppermint on Sep 1st, 2002, 6:35pm
 :)Thanks Margi.  I sincerely appreciate your concern and I realize I've not been doing much here but rambling on... other people have bigger problems.  

I've also heard from paul_b and firebrix, and all of you have given some mind-clearing advice.  It is difficult to be clear-minded when emotions are involved.

I actually did ask him more about his headaches.  He was starting to feel a little better... but he's had another few rounds today with CH and when we talked last night, he told me he really just needs to be alone.  He also told me I shouldn't take it personally.  He admitted that the CH attacks have been gettiing to him again, its hard being chronic for four years so far.

I guess I was on the right track when I told him maybe he needed someone else to talk to.  I can't really do much from where I am except to tell him that I would pray for him and tell him to continue to have hope and live his life the best way he knows how.  We were all put on God's green earth for a reason, and I know at times everyone has their doubts.  He did say he is a spiritual person, not necessarily religious....I have to believe then he is hanging on.  

Just thanks again to everyone on the board who has responded and is putting up with my posts.  I WILL be careful (I'm no dummy now  ;) ) and hopefully the next time you hear from me, it will be on a more positive or questioning note.  

One last IMPORTANT thing:  He was having trouble getting the O2 he needed today, he couldn't get it and really needed it as he was dealing with CH's all day.  Is there maybe an 800 number anyone knows about, or some kind of service that provides O2 supply to a CHer on emergency basis?  He sounded really miserable of course.  He is in the midwest.  If there's any info out there, please send it back my way and maybe I can do something.  He has medical coverage too if that would make a difference.  Hope to hear back soon.  

Thanks again Margi, and all of you great people on this website.   :-*

Title: Re: I don't have a clue - new here need advice
Post by Ree on Sep 4th, 2002, 8:41pm
http://www.hdw-inc.com/cattinywhitesleeping.gif Hi there... It looked as though you were talking to yourself for a while there if you look above sometimes I do the same thing... adding insult to injury then you get to see how many people read your posts and dont post back... Well sorry I missed yours...

When we have to watch our sufferers suffer up close and personal it is one thing... We know what goes on.  To be in your predicament is I'm sure hard for you because you dont know what is going on at his house where he is.  We also worry about whether our sufferers will hurt themselves.  Im glad WE dont have any guns anymore...

anyway we cant help you with the 02 my husband has had problems himself getting O2 I know some of the guys use welding 02 or diving O2... good luck on that note and dont feel alone if ever your post here doesnt get answered... yell my email is Ree16angel@aol.com I will pray for you and your friend and remember if you meet him do it in a public place or take a friend along with you... hard to trust anyone these days... ():) Ree

Title: Re: I don't have a clue - new here need advice
Post by suzanne102 on Sep 14th, 2002, 3:53am
Hi, i think i in same position as you, i don'y have a clue either, do you feel useless

Title: Re: I don't have a clue - new here need advice
Post by Peppermint on Sep 14th, 2002, 8:05am
Hi Suzanne,

I'm sorry you are feeling this way but you really shouldn't.  I think maybe my scenario is a little unique (did you read the whole thread?) and so I don't deal with CH on a regular basis.  However, I do know that  sometimes I am at a loss as to what's going on and it is difficult to know how bad it can be for a CHer.  

It has helped a lot to come here and get familiar with everyone and also get some knowledge.   The main thing to equip yourself with first is knowledge, and the rest is sure to follow.  You will find this "family" here kind, open-hearted, generous, funny, comforting and very available.  You may not get responses right away since everyone is all over the planet but you will hear from people.... ;)

I suggest you start a new thread, introduce yourself, and talk about how you are feeling, your situation, ask  questions.  Before long, you will be surprised at all the support you will get, and a few laughs too as this is quite a bunch!   ;D The CHers have an especially keen sense of humor, a blessing I suppose with what they have to deal with.   Just know that you are not alone, and you can go to any of the message boards to join in, lurk or ask questions, or just post your thoughts on any thread, or even start a new one!  

Take it easy, and feel free to send me a note anytime.  I haven't fixed my profile, I need a new email account so just post To Peppermint in the meantime or you can reply to me on this thread for the time being.  Or maybe try star2001pc@yahoo.com, in case it works.  

PFDAN (Pain free days and nights),
Pep

Title: Re: I don't have a clue - new here need advice
Post by Cathi on Sep 16th, 2002, 3:13pm
Hey, Peppermint-
I think there are more of us "long-distance" supporters than we really know. I have never seen a hit, I think once, I saw a shadow (neck adjusting, head uncomfortable, kinda lost in the conversation), but by the time my friend was hit (and he only alluded to it), he was by himself- in fact, in a strange town, in a hotel room, at that! I can't even imagine!! Point being, I've never seen, first hand, how hard this is for a CH., and I don't know how I could help (that's an open invite for anyone to jump in & tell me)-  Have you figured out a role for yourself yet? Have you figured out how "Angel" fits into your life? I've been following your thread, and I want to add my caution- it could be the very best thing that ever happens to you-
but it's probably wise to take things slllloooooowwllyy!
Great things are always worth the wait- so If it's great, time won't be a problem- I think he's lucky to have you! I'm here Pep- let me know if you need me- good to know others are out there- now, THE REST OF YOU- QUIT EAVESDROPPING AND JUMP IN!!!
Cathi

Title: Re: I don't have a clue - new here need advice
Post by Peppermint on Sep 16th, 2002, 4:02pm
Hi Cathi,

Interesting, never thought anyone was even really looking at this thread....  ::)

As far as my role in this person's life, its precarious.  We met through an online dating service, (!), I'm embarrassed to say....but I am glad I met him.  He is a sweet person, sensitive, tough on the inside, but very cautious when it comes to his relationships.  I guess the CH has interfered with his life so much and people that don't understand (I try, who knows who ignorant I come across) seem to have let him down, one way or another.  Can't say I blame him in the face of this monster; dealing with people's crap is just an unecessary evil, which I'm sure hurts no matter how jaded you get or how long you've been suffering with CH.  

So, yes, he's told me to slow down.. I have experienced a number of times that he's not up to conversation, is annoyed, mostly it seems the CH's that get him down and sometimes he's playful, and upbeat - but hell, that's any one of us at any given moment.  I try to look stuff up for him here if he needs info, though I have the feeling he's seen it all already.  If anything, I try to give a laugh or two, and tell him the things I like about him, talk about stuff to get to know eachother, besides the headaches.  I feel personally that someone who you truly connect with is worth most anything that you might go through, as long as they are not the ones causing the problems (i.e. spousal abuse, alcoholism, etc.)  I'm not comparing the vices as apples to apples, just giving an example.  There are many people out there that don't have any physical or serious problems, yet, what do they mean to us in our lives..?  

So, my friend "Angel", I don't want to reveal him, nor who I am in case he's reading, is special to me.  I think we are trying more to be friends first and see how that goes, though we started out the other way, much to the extreme.  Thanks for listening, and watching and maybe if this becomes something more, it will be a blessing.  I have to say, I miss him and haven't met him in person yet - so sue me.  

Pep

Title: Re: I don't have a clue - new here need advice
Post by Cathi on Sep 16th, 2002, 5:12pm
Pep-
Sue you? Not a chance!! Everyone needs a little special in their lives- play it out....see where it goes. You're growing and learning. My "sitch" is different-my friend is just that- a friend, who most likely doesn't need my support, so I'll send it your way, girl! Your "angel" seems to be pretty alone- that's why he needs you. My bud suggested I take a look at this site, to help me understand his beast- and, well, I guess I got kinda hooked! I'm here almost daily- checkin up on the gang! I'll be gone till the 25th, but I'd love to hear how things are going with you then- that'll give you a week or so to continue to explore each other, Pep- and I truly hope you find only awesome things! I'll be checkin' in when I'm back....oh, and Pep? I know you're a good soul- be good to you as well!
Cathi 8)    

Title: Re: I don't have a clue - new here need advice
Post by Peppermint on Sep 16th, 2002, 10:54pm
Thanks Cathi,

I needed the encouragement today... had a somewhat rough conversation with "Angel" today.  He's pretty edgy lately, and since I look forward to talking to him, I guess my feelings were hurt when he gave me a curt response - it kind of was a shocker.  I'm trying to be sensitive to how he perceives things and what makes him feel the way he does about himself - no easy task across the distance.

Could it be I'm being too sensitive (hormones?) - Maybe -  I just don't want to dismiss his actions either.  Is this too soft of me?  I just want to be there....

Posting sadly,
Pep

Title: Re: I don't have a clue - new here need advice
Post by Cathi on Sep 17th, 2002, 11:26am
Good morning Pep-
Doesn't sound great, Hon- I think you deserve a little more respect than that......"Angel" needs to realize you are due some basic consideration....then again, we are all entitled to a rotten day, now & again. Since I'll be gone till the 25th, I feel the need to burn something into your head, to keep you going till I get back......
Pep- you're an awesome person, who deserves the same in her life! That person could very well be a CH-
but you need to look out for yourself.....huge difference between supporter and enabler, but I KNOW you know that! I'll be sending you good vibes all the time I'm gone- and will look forward to hearing from you upon my return- be good to you, be good to your "Angel", and continue to be cautiously supportive, till he proves he deserves for you to "pull out all the stops". At any point, I'm right beside you....hey, if I can't support a supporter, who can I support?
Cathi 8) ;D :-*

Title: Re: I don't have a clue - new here need advice
Post by Peppermint on Sep 17th, 2002, 7:47pm
Cathi,

You are the best, GIRLFRIEND!  Thanks, have a good trip, you're right....I know just what you are saying.

Thanks for the good vibes, I will keep them in mind, the next time I speak with "Angel"  :-/

Pep

Title: Re: I don't have a clue - new here need advice
Post by suzanne102 on Sep 23rd, 2002, 1:56pm
Hi Peppermint, thanks so much for replying to my mail, i think i find it so hard having distance between us.Last week i finished with him, because he couldn't be here with me when i neede him, there is only 70miles between us . The day after he was rushed into hospital, i felt so responsible.He shuts me out i find that very hard. I try to give him space, but i love him. I think he has lots more problems but won't open up to me, his moods change so much. But he is such a sweet person , he says he loves me , but i get doubts when he goes quiet on me. I wish i could be near him, thats all i want, just to be with him to support him. He's so frightened, how can i convince him that i love him not pity him. Suzanne



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