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        Supporter's Corner >> Supporter's Corner >> Patience... anyone got any for sale???
        
(Message started by: Monique on Feb 17^th, 2002, 9:11am)

Title: Patience... anyone got any for sale???
Post by Monique on Feb 17^th, 2002, 9:11am

sorry just venting. :'(

Title: Re: Patience... anyone got any for sale???
Post by Margi on Feb 17^th, 2002, 9:32am

Patience. It IS a precious commodity sometimes isn't it? I have the perfect solution for you. Get yourself to Hamilton or Ottawa. 1-800-westjet. Direct to Calgary, 4 hour flight outta Ottawa, 3.5 from Hamilton. $265.
I happen to know that there is a flight departing Hamilton this afternoon at 3:10 p.m, and connecting through Ottawa at 3:50. Arriving at YYC International at 6:30, gate B.
I'll put the back seat up in the car, so Mike can sit THERE. Hope you don't mind a little dog hair, but Barly promised me he was going to have a shower today, so it will at least be CLEAN hair.
I'll go wash the sheets right now and get the hide-a-bed all set up for ya.
SBH.
LY
p.s. if you need to yack, call me collect, Mrs.

Title: Re: Patience... anyone got any for sale???
Post by Monique on Feb 17^th, 2002, 11:25am

http://www3.sympatico.ca/Compunique/worldval.gifthanks for sending your love round the world to me Margi! So it was only cross the country.. same same.
http://www3.sympatico.ca/Compunique/kiss1.gifBig kiss for yah!
I guess I have just found the end of my rope. Little tired, k, whole lot tired and frustrated.
Greg got hit bad lastnight and is in a really really bad mood today. He has just been growling at the kids and me all day and I am trying to be patient but I am in allot of pain myself which has just made me a little raw I guess. I think we just need a break. I will be on that flight! LOL Wish with all my heart I could.
Sometimes... the rare opportunity that I can drive still I get into the truck and think of just keepin on going. Just keep driving (I know point the truck west! :) )
We had a big blow up this morning about the bloody shrooms. I have been fussing with them cuz it's so cold in the house (we heat with wood stoves and at night it gets pretty cold) I can't keep the temp up in the box. He says to me this morning when he came in and I am putzing around with them "Oh sheez, again!!!" rolls his eyes and walks out. Like I am doing this for ME!??
You know what? I think I like having a Supporters section!! Wasn't too sure about this before but to be honest I had a hard time venting like this on the other board cuz I knew there would be sufferers that would feel I don't understand and that I was not giving Greg what he needs etc. But I have been there through thick and thin for 22 years and yah, I am not Wonder Woman. I am human, totally insane too boot, but human and I think it probably does us a world of good to have a safe forum to vent in. I feel better already just having written all this. Likely be better for Greg too that I can get it out of my system like this instead of dumping it on him.
Thanks yet again DJ for this lovely little spot for those of us that handle the other side of this horror.

Title: Re: Patience... anyone got any for sale???
Post by Margi on Feb 17^th, 2002, 11:33am

great post, Monique - we all walk in your shoes from time to time, us supporters.
I know you have no other option where you live, but woodsmoke is a big trigger for Mike. Depletes the o2 in the house. Make sure you crack a window just to get some fresh air flowing, ok? It really does make a difference.
So, today it's Greg's pic on the dartboard, huh? I think we should all keep a pic of our sufferer handy and just rotate it. :)
We all know they can do little to alleviate the cluster moods but we also all know how hard it is to dodge the barbs when they start flying. We should make ourselves a bunch of shoes, us supporters. Eggshell walkin shoes.
116 more sleeps till you're here, Monique. 116.

Title: Re: Patience... anyone got any for sale???
Post by Monique on Feb 17^th, 2002, 11:44am

Oh sure Margi, crack the window freeze the shrooms! LOL
AND I told Greg about the woodstove thing, I think that Mike even mentioned it to him at lunch... What does he say "Well we don't have enough firewood as it is, should we heat the whole of haliburton??"
Sorry for mentioning it... egg shell shoes are a great idea.
I feel like a shit for saying this stuff. But it really is walking on egg shells. I don't blame him, I understand it and I know he does not ask to feel like this ... but knowing all that, accepting it all does not make it any easier to deal with.
For the most part I walk away, and try to let it all run off my back but lately it just seems to be hitting me the wrong way. Iknow I am taking it all way too personally and allot of it is that I am just so tired too from the lack of sleep.... Just feel like screaming my bloody head off.
The funny thing is, unlike allot of Clusterheads, Greg wants me around when he has an attack. During the attacks if I told him to eat dog shit, that it would help, he would try it. He hangs on every word I say in the midst of the pain. But when the attack is over, and I make suggestions or whatever I might as well be talking to a wall. I know that when not in pain, it's likely the last thing in the world that he wants to talk about, but that gets so frusterating.
K, probably done my quota of bitching today. Best shut up before I get evicted from here.
Bad day, bad, bad day. :'(

Title: Re: Patience... anyone got any for sale???
Post by Monique on Feb 17^th, 2002, 11:45am

:oPS. Yah, got that pic I sent you lastnight up on the dart board! Guess where I am aiming??? LMAO ;D

Title: Re: Patience... anyone got any for sale???
Post by Margi on Feb 17^th, 2002, 11:45am

answer the phone, Leaky.

Title: Re: Patience... anyone got any for sale???
Post by Donna on Feb 17^th, 2002, 2:12pm

:-*

Interesting conversation going on between you two. I agree about having a private corner - seems like we can be a lot more open with our feelings.

I know how you feel, kiddo. About the only time my son John looses it is during a headache. And afterward, he doesn't want to talk about it or take any suggestions. I just try to let him see me in the room, but keep my mouth shut even when he's ranting and damning the world and everyone in it. Then it's quiet time and I know the pain is too bad to speak and it will be over pretty soon. Oh, it hurts me so much too to see my son like this My gut just churns because I can remember the pain all too well. It is unique.

There have been times when I allowed myself to snap back at him and have felt so guilty and sorry as soon as I opened my mouth. I know better and I've still done it.

Other diseases that hurt this bad usually kill you in a relatively short time. This one just twists up your life and everyones around you, IF YOU LET IT.

I've been around this 'ol world a lot longer that most on the board, and time is getting more prescious to me each day that I stay healthy. If I had my life to live over, there are a LOT of things that I would have done differently.

If I could make one wish come true, it would be that every one of us could see ourselves without that loved one around anymore. What would we like to say or do for him/her?

Treat every day as if it were your/their last. Show the people in your life the love that you feel. Be gentle, be kind. This might sound mushey, but this is one hell of a hurt when you do lose some one that you love, or loved at one time. Don't put yourself in the position of wishing you had done things differently.

We all have our own stories, but when it comes right down to it, parts of our stories sound a lot alike.

I wish you patience, strength, understanding and courage. These are the virtues of a clusterhead supporter.

Love,
Donna

Title: Re: Patience... anyone got any for sale???
Post by Todd on Feb 17^th, 2002, 3:23pm

Donna makes an excellent point when she says "IF YOU LET IT".

Sorry, Monique, but I can't be as understanding of Greg as you are. Sure, he's hurting....all of us understand that. But not all of us (by a long shot) take it out on those around us.

I'm the reverse of Greg....leave me alone during an attack or I might snap your head off. DURING the attack, I can't control my emotions and frankly need to keep my attention on fighting the Demon. Distractions are painful.

But after the attack, the pain's gone! Just plain gone. No reason to take anything out on anyone at that point.

It's not my place to pry into your personal life, so I'll just mention this once and let it drop - - are you sure there aren't other factors causing Greg's attitude?

Hang in there, Monique...this too shall pass.
KTSSU,
T

Title: Re: Patience... anyone got any for sale???
Post by Margi on Feb 17^th, 2002, 3:27pm

Donna, I think you are most unique among us, being that you've actually been on the other side of the fence. That's what makes you such a great supporter. I can't imagine the pain you go through seeing your child go through clusters, knowing exactly what he is feeling.
Know that you still qualify to get support from us rookies here too, ok?
Hugs
Margi

Title: Re: Patience... anyone got any for sale???
Post by Margi on Feb 17^th, 2002, 3:29pm

and, no Todd - it's not your place to ask Monique a question like that.

Title: Re: Patience... anyone got any for sale???
Post by Todd on Feb 17^th, 2002, 4:09pm

on 02/17/02 at 15:29:24, Margi wrote:

and, no Todd - it's not your place to ask Monique a question like that.

Correct...that would explain why I said "so I'll just mention this once and let it drop", clearly indicating that I neither wanted nor expected an answer, but was rather posing a possiblity for Monique to think about.

:)

Title: Re: Patience... anyone got any for sale???
Post by Donna on Feb 17^th, 2002, 4:56pm

;D

Margi.........

Most preceptive, little sis. Thanks for the invite. Guess you saw thru my mood of today. The only way out is up.

Thanks again,
wheeeepy

Title: Re: Patience... anyone got any for sale???
Post by Margi on Feb 17^th, 2002, 5:06pm

Todd, so why even mention something you have absolutely NO experience in or business questioning, in the first place? Why add cause for additional pain to someone when they are already obviously down and hurting? Just so you could brag that you deal with your headaches better than someone you have never met does?
This isn't a popularity contest, Todd - this is an avenue for supporters to vent -- the first one of it's kind, in fact. I'll thank you not to pile further hurt on any of our supporters. That was just vicious and totally uncalled for.

Title: Re: Patience... anyone got any for sale???
Post by Margi on Feb 17^th, 2002, 5:22pm

In case you don't understand my post above, Todd, I'll go a little further here. This is the first time supporters have ever been given an arena that is just our own. A place where we can compare notes, vent, anything we want. We get feedback from other supporters who understand what we go through on this side of the fence.
By insinuating that a supporter is making too big a deal out of dealing with a clusterhead's life or that THEY might be causing the sufferer some grief, you nip that opportunity in the bud, Todd, and that supporter turtles again. We quite often appear to always be in a good mood for our sufferers, pretend that we have nerves of steel, coats of armour, etc. But sometimes we need to let our hair down and ask for understanding. And I'll be DAMNED if I let anyone stand in the way of that here.
If you didn't want any further mention or comment from that remark, then I would think that keeping it to yourself would have been a better plan.
I will ALWAYS come to the defense of a supporter in trouble, and if I see any further abuse in this area, I WILL delete your posts. Fair warning.
:)

Title: Re: Patience... anyone got any for sale???
Post by Monique on Feb 17^th, 2002, 6:05pm

On the other board I have read allot from people that suffer from CH complaining about spouses, supporters, (not always one in the same) employers, friends etc. that "just don't get it" "Don't understand" "Can't fathom the depth and intensity of the pain" etc. etc. It is rare that someone on the board would say, "sheez but you know it's hard being a supporter too." "perhaps there is something else going on in thier lives that explains thier lack of support for your CH."

I think it's safe to say that we supporters deserve the same consideration here on our own forum especially. There were a few CHer's that were upset that we supporters were on the board at all. Well now we have our own space. And I think that Margi made a valuable point. It's VERY VERY hard to speak about how frusterating it is sometimes. It's been soemthing that has been frowned upon on the old board. We were looked at as being unsupportive and not understanding. So we sucked it up. We said all the right things and vented in private to ourselves and the few of us that had close bonds with another supporter we were blessed enough to have the phone or email and someone on the other end that knew what WE were going through.

By flaming anyone on this forum, or the other for thier venting or cry for help, you risk sending them skuttling back into the corner. THAT'S not what this is all about. You Clusterheads needed this sancutary that DJ built like you need your hearts to beat. It was the saving grace for hundreds of CH. It also was invaluable for supporters. BUT NOW, now we supporters are blessed with a safe place to do the same.

I hope this will continue to be a safe place to be able to be able to be honest and open with our needs, fears and anger. I hope and pray that all the supporters out there will feel that we finally have a place that we can take the armour off and be ourselves, be rejuvinated and recharged by it and able to go back to our roll as supporters with a renewed strength. I think that's what this was supposed to be all about.

Title: Re: Patience... anyone got any for sale???
Post by Margi on Feb 17^th, 2002, 6:07pm

Monique? Will you marry me?

Good 'nads, girl. You said it perfectly.

OK, crew - carry on. Over.

Title: Re: Patience... anyone got any for sale???
Post by Monique on Feb 17^th, 2002, 6:16pm

Dear Donna,
I cannot imagine what it is like to be in your shoes. I think you are in the very ineviable position to see both sides and have a magnitude of knowledge and insight to offer everyone here in Clusteropolis.

Our son Joshua (he's 19) has had a few CH. They were very mild and only a few. But I know that for me, it's horrible to see the man I love go through these things, BUT the thought of one of my babies getting them, that just scares the crap outta me. I can only imagine what it is like to see your child endure this nightmare. As a mother I know it would be 1000 fold worse on me than watching my husband. They are like little tiny pieces of yourself wandering around outside your body. It is a horrible feeling to not be able to ease the suffering of your child.

I hope you know that we are here for you. I hope you will always feel that this is a soft place for you to land and vent and cry.

Title: Re: Patience... anyone got any for sale???
Post by Paco on Feb 17^th, 2002, 6:28pm

My dos pesos. Supporters have their own cluster hells. They don't know the physical pain of a cluster, but I'm not sure that my wife doesn't suffer more. In the midst of a severe attack, through the tears in my right eye, I have seen the tears of frustration and helplessness of someone who was as convinced as I was that these things might kill me. I have seen her go to work early the morning after tending to me through attacks all night. If my supporter needed a heart transplant, she could have mine, as old and worn out as it is.

Title: Re: Patience... anyone got any for sale???
Post by Monique on Feb 17^th, 2002, 6:44pm

AWE Paco, now yah gone and done it. You made both Greg and I cry. Thanks for throwing some love on us and breaking the ice of a very stressful day. He read your post, kissed my head and said "ditto" :) A man of few words. LOL

Thank you for your "dos pesos" they were worth thier weight in gold!

Title: Re: Patience... anyone got any for sale???
Post by Todd on Feb 17^th, 2002, 10:23pm

Margi,

I don't dispute the value of supporters having our own place to post.

Can you explain why several selective posts from Monique, you and myself were deleted and why, when I tried to post earlier, I got a message that said this thread was locked?

Thanks and
KTSSU,
T

Title: Re: Patience... anyone got any for sale???
Post by Monique on Feb 17^th, 2002, 11:03pm

Todd....

Margi is the Moderator of this particular forum, NEVER ONCE heard (read) you ask DJ why he had deleted a post or questioned him in anyway. He trusted Margi enough to ask her to moderate this forum. That in it's self is enough reason for me.

I think we have all made our points on this topic and as Margi said "lets carry on".

Title: Re: Patience... anyone got any for sale???
Post by Monique on Feb 17^th, 2002, 11:06pm

Hey Bear,
Thanks. ;D