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        Supporter's Corner >> Supporter's Corner >> From an Anonymous Sufferer
        
(Message started by: Margi on Nov 16^th, 2004, 9:55am)

Title: From an Anonymous Sufferer
Post by Margi on Nov 16^th, 2004, 9:55am

I got this this morning from a 30 year sufferer who wants to remain anonymous but wrote this for his supporter.

and sufferers wonder why we supporters keep hanging in there? This one really gets me.

"Supporters go to heaven,
God knows them well.
They all go straight to heaven
'cos they've spent their time in hell."

thank you, sir. :-*

Title: Re: From an Anonymous Sufferer
Post by Grandma_Sweet_Boy on Nov 16^th, 2004, 3:05pm

Amen to that - don't know where we'd be without the supporters in our lives. God Bless them all!

Title: Re: From an Anonymous Sufferer
Post by Redd715 on Nov 18^th, 2004, 8:28am

on 11/16/04 at 15:05:20, Grandma_Sweet_Boy wrote:

Amen to that - don't know where we'd be without the supporters in our lives. God Bless them all!

Some of us are doing just fine... ;;D. It was once said to me that a bad supporter is better than no supporter at all. Beginning to believe that whole heartedly.

Title: Re: From an Anonymous Sufferer
Post by Grandma_Sweet_Boy on Nov 18^th, 2004, 8:32pm

Ah Redd, you're right and I should have been more specific to say that for those of us who have good supporters, we are blessed.

I know that you do it on your own with a ton of other stuff on your plate too. I can't even imagine having a bad supporter - you're so very right, you'd be better off with none in that case.

If you need an email or PM supporter, I'll be there for ya in a flash! :)

Title: Re: From an Anonymous Sufferer
Post by vig on Dec 11^th, 2004, 10:12pm

It's MY opinion that no supporter is better than a bad supporter...
;;D

Title: Re: From an Anonymous Sufferer
Post by Redd715 on Dec 12^th, 2004, 12:45am

on 12/11/04 at 22:12:10, vig wrote:

It's MY opinion that no supporter is better than a bad supporter...
;;D

My bad Paul...I did misquote that...

I still feel I'm better with no supporter than having a bad one.... ;;D

Again..my fault ... :-[

Title: Re: From an Anonymous Sufferer
Post by cray on Jan 6^th, 2005, 7:51am

Reckon it,s a bit sad that any sufferer wants to remain anonymous,but if thats the way,thats ok

Title: Re: From an Anonymous Sufferer
Post by ClstrHeadSupport on Jan 12^th, 2005, 3:09pm

I agree Vig.

My fiancee's ex (doesn't that just say it all! LOL) used to tell him that he got them on purpose just to screw up her plans or her day. Selfish B!

Those kinds of people are the ones who deserve the kind of hell a sufferer has!

Title: Re: From an Anonymous Sufferer
Post by sandie99 on Feb 7^th, 2005, 12:48pm

I don't know which is worse... a bad supporter or no supporter at all. My mum is a bad supporter, but my friends have been great. I know it's not that simple... I just wish that when my dad was battling against the brain cancer, I managed to be a good one. I'll never know.... :'(

Title: Re: From an Anonymous Sufferer
Post by Ellick on Feb 27^th, 2005, 1:55pm

I think saying what you think to each other when the emotions are NOT tight is the best way.

I think it is just as tough for any supporter. My wife was saying earlier today that when I am in a cycle it feels like there is sickness in the house and everything just stops. She feels like throwing all the windows open and letting fresh air back in again.

I look at it this way. The strain is on both of us. We have to work on that as well.

To anyone that supports BLESS YOU xxx

Ellick

Title: Re: From an Anonymous Sufferer
Post by Jerome_Ebel on Apr 24^th, 2005, 2:21am

From a new supporter.
Why are there CH sufferers on this earth? So the rest of us quit whining and realize how good we have it!! I know there are other reasons that I will learn about later but this explanation will have to do for now! I'm new to this forum so forgive me if I'm out of line in any way. "Show me a guy who reads the owners manual BEFORE he takes the new car for a drive and I'll show you a liar!"

Title: Re: From an Anonymous Sufferer
Post by don on Apr 24^th, 2005, 8:47am

Quote:

From a new supporter.
Why are there CH sufferers on this earth? So the rest of us quit whining and realize how good we have it!!

You will be the supporter everyone wishes they had my friend.

Remember that supporters have to occasionally whine and vent to. This is the place for you. Dont hesitate.

P.S. I'm a sufferer who who supports supporters.

Title: Re: From an Anonymous Sufferer
Post by Redd715 on Apr 24^th, 2005, 12:19pm

on 04/24/05 at 08:47:02, don wrote:

You will be the supporter everyone wishes they had my friend.

You know what Don? I never in my most wildest dreams thought I'd meet anyone who would willingly walk into this fucked up life of mine...but.... [smiley=JAW_DROP.gif]

I'm a lucky woman....

Title: Re: From an Anonymous Sufferer
Post by don on Apr 24^th, 2005, 1:06pm

Love, if its real, over rules all pain and disability.

Title: Re: From an Anonymous Sufferer
Post by zebb37 on May 13^th, 2005, 3:41pm

on 01/12/05 at 15:09:38, ClstrHeadSupport wrote:

I can identify with that point of view - my wife is apt to re\ct that way. Sometimes it does seem that all life kind of stops for my episodes.

3 months or more is a long time out of a well person's year to be sat around, impotantely watching someone suffer.

Title: Re: From an Anonymous Sufferer
Post by Erin on Jul 13^th, 2005, 7:41am

[quote author=Redd715 link=board=supporters;num=1100616917;start=0#12 date=04/24/05 at 12:19:23]

"You know what Don? I never in my most wildest dreams thought I'd meet anyone who would willingly walk into this fucked up life of mine...but....

I'm a lucky woman...."

Oh God yes... I just want to use this pain-free moment to say thank you to Arno for being the most special man any woman could ever hope to know. To be fair, he didn't walk into the CH part of my life knowingly - I had not had them for 13 years, until 3 weeks ago when they returned with a vengeance, so neither of us knew that we would have to be dealing with this hell now... but like the angel he is, he rose to the challenge without hesitation or complaint, and I appreciate his innate *good-man-ness* all the more for his being here for me "through the fire." I love you, Arno!

E.

Title: Re: From an Anonymous Sufferer
Post by Redd715 on Jul 13^th, 2005, 1:17pm

Quote:

"You know what Don? I never in my most wildest dreams thought I'd meet anyone who would willingly walk into this fucked up life of mine...but....

I'm a lucky woman...."

Update on this...He sort of walked right back out again.. Not due to the HA's... he has personal issues that made the attempt at building anything just a (tad bit?) premature.

Title: Re: From an Anonymous Sufferer
Post by ClstrHeadSupport on Oct 24^th, 2005, 9:18am

Sorry to hear that Redd, but I'm a firm believer that everything happens for a reason. And I myself have learned that sometimes it takes years and years for those reasons to come to light, but when they do everything else falls into place.

Title: Re: From an Anonymous Sufferer
Post by Guiseppi on Jan 5^th, 2006, 6:53pm

I need to get my wife to start posting here. She's put up with these once to twice a year visitors for 25 years and has never bitched. When she'd see me drag out the 02 she'd pour me a glass of ice water, put the cafergot on the coffee table, dump a couple of ice packs by the chair, grab the kids and head out for an hour. Those of you who do this alone, I keep on the same pedestal I reserve for single parents. I'm not sure I could face this alone, my prayers and thoughts to all of you who have to.

Guiseppi

Title: Re: From an Anonymous Sufferer
Post by Lietuvos on Jan 29^th, 2006, 12:24pm

i've always said:

I no longer fear Hell, for there in no pain worse than a cluster.

p.s. are you the same redd that skins for morrowind?

Title: Re: From an Anonymous Sufferer
Post by rapunzel on Mar 14^th, 2006, 10:30pm

I have been on all ends of the supporter-no supporter- great supporter scale-
my exhusband was a very cruel person who used to tell me that he hoped it was a brain tumor-and wouldnt help me at all during attacks. He called me a baby when I would cry and pace with the pain.
I also went through it all as a single mom with three little kids, after my divorce- and during one episode- kids were awake and I got hit by a ch- I had the kids go next door to the neighbors (didnt want them to be scared), she called my mom to come help me. She was scared because she didnt know what was going on, and called an ambulance after she called my moms house. But she kept my kids for me until I returned and had gotten thru that particular episode. I managed to keep it away from the kids as much as possible other times, because they were so young, they couldnt have handled my episodes without being scared.

My now husband is a God-send, he is very supportive, even if he doesnt understand, and he is a great help with the kids/house/willingness to help me even though there really is nothing that can be done during an attack (except get OUT OF MY WAY :) )

I just wanted to add that a bad supporter is worse than no supporter at all, however I wish all CH sufferers a good supporter at some point. It makes it so much easier to have someone to talk to about it, who doesnt judge you or think you are faking it or a whimp, someone who can just pat you on the back and love you-- pain and all.

My thanks to all the good supporters out there. We appreciate you.

Title: Re: From an Anonymous Sufferer
Post by tedski on Jul 20^th, 2006, 9:02pm

Amen, I think the poem is great.

I also don't think you can be a bad supporter because if you care at all about what the person is going through and how the beast is destroying their life, you're a good supporter. If you don't care or care more about yourself then them you're not a supporter at all.

Title: Re: From an Anonymous Sufferer
Post by Daddys_Devil on Sep 7^th, 2006, 9:34pm

Here's a poem from the point of veiw of a supporter. I just made it up so bare with me. Hope everyone likes it.

Hello. I'm a supporter
Hello. I'm a suviver.
I support, and I live.
Giving the best gift
I know how to give.
I do my best,
of I think's what right.
Getting with your pain,
in the dead of the night.
I live might be your love,
I might be a friend,
I might be a stranger,
but I'm here 'till the end.
Hello. I'm a surviver.
I support, and I live.
Giving the best gift,
I know how to give.

Always,
Felicia 8)

Title: Re: From an Anonymous Sufferer
Post by pingu1981 on Feb 23^rd, 2007, 4:13pm

Like it! Absolutly true! Don't know where I'd be if it wasn't for my parents!!!!!!!!!!! :D

Title: Re: From an Anonymous Sufferer
Post by sldrswyfe on Jul 10^th, 2007, 3:28pm

With the utmost respect to everyone and their personal reasons for their opinions...I think, speaking only for myself, that no supporter beats a bad supporter.

Somehow, being mocked, degraded, belittled, made to feel guiltier than I already do...someone rolling their eyes while Im in agony...I could do without...at least I have peace alone.

I have a good supporter at this time in my life...but know both sides...had bad supporter for a long time.

Just speaking for myself... :)

But, in reality, whether a human being is there or not...we always have a supporter...and ultimately, we face the pain alone. Just us and the beast in the ring...

Title: Re: From an Anonymous Sufferer
Post by seasonalboomer on Jul 10^th, 2007, 4:15pm

Sometimes a tight supporter is more uncomfortable than using no supporter at all.............. ;)

Title: Re: From an Anonymous Sufferer
Post by sldrswyfe on Jul 12^th, 2007, 12:44pm

exactly sb ;)

Title: Re: From an Anonymous Sufferer
Post by Kenny on Aug 28^th, 2007, 11:53am

My husband has been suffering from CH for 5 years. It took 2 Neurologists and 2 Family Physicians to try and diagnose it, but none of them could see past "Migrains" Because of this website, I diagnosed his problem and immediately started reading as much as possible on the subject. I printed out the materials and took them to our family physician. We are getting help for him (no cures-but Imitrex shots work while they last) but have been frustrated by my inability to help him when he goes through a bad cluster. Sometimes I have to go for a walk just to keep from crying in front of him! Your suggestions are welcome here. :-*

Title: Re: From an Anonymous Sufferer
Post by Mosaicwench on Aug 29^th, 2007, 2:33pm

on 08/28/07 at 11:53:47, Kenny wrote:

Welcome Kenny!

I know all about going for walks or sitting on the porch crying when my dear is in cycle. It's what we do.

As you know from reading here there is no cure. But there is treatment and remission and help-aplenty. I would encourage him to come here and read and digest and learn all he can. Knowledge is power and can help during the darkest cycles.

My largest frustration, like yours, is not being able to help. My clusterhead wants to be left alone and that's what I do. It goes against everything in my nature to walk away from this beast but if that's what my dear wants, then that's what I'll do . . . thus the walks and the porch :-/.

I would also encourage you to have a frank discussion about his needs during an attack. He may not want you near but "near-by." Or he may like a massage or hot coffee or whatever. Find out what he wants from you and how best to facilitate it - even if it means he wants you to take a walk. At least you KNOW and can respond to this creepy beast who interrupts our lives.

Keep reading and don't be afraid to ask questions. Someone here will always be by shortly to help.

Welcome to the family.

Title: Re: From an Anonymous Sufferer
Post by frozzy on Oct 22^nd, 2007, 3:34pm

I have just signed on so I can post in the boards. My husband has had CH for about 10 years. Diagnosed 6 years ago. He is in a cluster right now, for about 4 weeks. We have 2-4 weeks left of this life-sucking episode. He just went back to the doc today, usual stuff is not working this time. Looking into getting O2. I hope it works. My problem is to try to get hubby to not think its his fault when we can't go and do things. He keeps apologizing, I keep telling him its okay, its not your fault. I can see him ageing before my eyes, each episode (2x year) takes its toll. I'm starting to cry as I type this, I'm at work and can't get him out of my head. I know I have to be the strong one, and keep reminding him that it will be over in a few weeks, and to hang in there. I feel guilty when I get a good nights sleep, so helpless that there is nothing I can do but be there when he wants me. Thanks for letting me unload, none of my friends or family realize the depth of the pain he endures and how soul-sucking it is. I get regular migraines, so have an inkling but I know its only a glimmer into his world.

Title: Re: From an Anonymous Sufferer
Post by Annette on Oct 22^nd, 2007, 5:54pm

on 10/22/07 at 15:34:10, frozzy wrote:

..... Thanks for letting me unload, none of my friends or family realize the depth of the pain he endures and how soul-sucking it is.

Hello Frozzy

I am sorry to hear that your husband is in cycle again and the usual meds are not working and that its getting you down.

I understand perfectly how you feel with what you typed up there because I felt exactly the same thing. My husband has CH and his last cycle was more than 8 months long. Many times I thought I couldnt take it anymore, but then somehow I carried on. CHers get pain in their heads, we get pain in our hearts. Both hurt like hell !

Ask him to join the Board and talk to others here, it will help him tremendously. Organise oxygen as quickly as possible. Go for the high flow rate, most starting at 12-15 L/min but some go as high as 25L/min. Apart from it working very well for most in aborting a hit, it also helps cool the face and head and has a calming effect.

Other things help too such as an energy drink slammed down quickly at first sign of a hit, ice cold wet towels applied to the neck and face or for some scalding hot shower can help too.

You can encourage him to drink as much water as possible during the cycle and at the start of the hit. Melatonin at night often helps warding off the night hits. Make sure he eats well, sleeps as much as he can, keeps fit and does suitable exercise. Encourage him to try relaxation techniques, keep the mind clear, focus on the now and here instead of fretting about the next hit.

Apart from meds that his doctor can prescribe, there are a lot of things that you and him can try and do to help make life just that much more bearable. Every little thing helps.

By the way, I am concerned that he has had CH for 10 years and the doctor doesnt know to prescribe him oxygen as yet. Maybe he/she is not that familiar with CH treatment. If the hits are bad, is he on a prednisone taper? What meds has he tried ?

Keep yourself busy, keep doing the things you normally enjoy. Treat the hits as they come with whatever you have, oxygen, meds, ice, energy drink, strong coffee ...etc. Once they are gone concentrate back on life as normal as possible. You will see that 2-4 weeks will just fly past. Dont keep counting how much further he has got to go with this cycle, keep counting instead each day how many hugs and kisses and cuddles you have given him . They are what that count ! :)

For yourself make sure you spend time on your own doing the things you like, get yourself some nice chocolate and some fresh flowers. Go for a walk and enjoy the scenery. Take deep breath and sing whenever you can.

If you feel like crying, my shoulder is always here and ready for you, just drop me an email or a PM :-*

Take care, God bless and painfree wishes to you both.

HUGS

Title: Re: From an Anonymous Sufferer
Post by Paula on Oct 23^rd, 2007, 9:37pm

It is amazing how great a childs soul is. I had nobody about 20 years ago, had a small 1 bedroom apt, my son sleep with me, he was about 2 or 3. He would be so quite, I would put milk in a glass for him in the fridge and he would get his own cereal in the morning, watch TV, or play. I even had a time at McDonalds in the parking lot were I had a dance with the devil in the back of an old dodge dart. I tried so hard to keep as much of it from him as I could but kids just know sometimes what is going on. He would tell me that he would buy me a new car and new house and nice furniture and lots of food. It was his way of saying it was OK and he loved me no matter how or where we lived. He is 21 and a very caring man. Women love him. He is very very understanding. But I haven't got my car or house yet! :) I am going to have to remind him of that. LOL Anyway, children have beautiful souls.
I have a great supporter now, and all the supporters here. Who could ask for anything more.
Love you all Paula

Title: Re: From an Anonymous Sufferer
Post by RabidClock on Mar 12^th, 2008, 7:46pm

I'm new to the whole supporter role, but my opinion on the matter is anything worth doing isn't easily done; and I know for a fact this is worth doing.

Title: Re: From an Anonymous Sufferer
Post by Jackie on Mar 12^th, 2008, 8:10pm

on 03/12/08 at 19:46:49, RabidClock wrote:

I'm new to the whole supporter role, but my opinion on the matter is anything worth doing isn't easily done; and I know for a fact this is worth doing.

That says it all and tell me you are a fine supporter.

Big Hugs,
Jackie

Title: Re: From an Anonymous Sufferer
Post by Angie on Mar 12^th, 2008, 10:17pm

on 03/12/08 at 19:46:49, RabidClock wrote:

I'm new to the whole supporter role, but my opinion on the matter is anything worth doing isn't easily done; and I know for a fact this is worth doing.

You are so right, welcome, we will be with you every step of the way.