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For all supporters of sufferers


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After almost 3 horrible weeks, there's finally some "normal" living back in the house.

Don't get me wrong, I fully understand the hell you sufferers live in and I definitely don't want to seem like I know what you're feeling because I don't! I'm just a partner of a sufferer and trying to help any way I can.

But.....after the last couple of weeks I need, I have to vent, I'm sorry about that.

So here's my frustration written down.

- I'm so tired of people that don't understand what CH is.

- I'm so tired explaining over and over again that I'm not an   insensitive person just because I'm not sitting by his side during an attack. It hurts me too but he doesn't want anyone around while having an attack!

- I feel so useless seeing him suffering and not be able to help!

- I' m angry when people say that "everyone has a headache every once in a while", and than look at me as if I'm exaggerating when I say it's more than just a headache.

- Sometimes I'm tired to do everything alone when he's getting hit all the time.

- I'm angry because all the neurologists he went to, don't know what to do anymore, he's just a "rare" case"!

- I'm hurt because he's a victim of this condition.

And please dear, don't tell me you're doing fine when I can see your not!

Don't tell me not to worry, because I will anyway.

Don't tell me I'm better of without you so I can live a "normal" life!

Please don't feel guilty when I cry for you sometimes.

Let me deal with this horrible condition you have, my way!

Sorry if I offended somebody, that is not my intention at all.

I just needed to get this off my chest....

Elly

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Hi Elly,

I think it's a wonderful post, and we all need to vent on occasion.

I'm single, and a sufferer. I hate being single. The few time I have been with someone and had attacks, I cherished having someone there to hold me through it (I don't normally pace), and to have someone there afterwards when the real tears flow. But, I think I'm probably unique in all that approach.

On the flip side, I feel really bad for the person I'm with, as they see me in so much pain, but are so helpless. So I hope, being able to hold me is a way that they can do something, and although it may be small to them, it is massively valued by me.

I also hate that people don't 'get' what a cluster is like. I have daily chronic headaches, so basically a headache 5 days out of 7. My longest single headache lasted 7 months. I also (until busting) have really bad migraines that can last for 5-7 days. And then clusers on top of all that.

So part of me felt for my boss when I would phone in with 'yet another migraine' and sign off work for a week. He just didn't get it. He didn't like me for missing so much work, and I didn't like him for not understanding.

I've always wished I had a super power to touch someone and allow them to feel one of my headaches for 5 minutes.

Anyway, really hope things get better for you guys. I think supporters are very wonderful people.

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Elly, I'm sure everyone here, sufferer or supporter, knows where you are coming from.  And that means we can celebrate with you and Jan for his recent better days, and commiserate with you for all you and he have been through. Now that you have an oxygen system that works and you know about busting, you and he can imagine a better future, at least.

If it wasn't for the people here and their kindness and courage, it's hard to imagine how much worse life would be, because, as you have said, even friends and relatives don't seem able to really understand CH or hold in their minds how painful it is; doctors, even though some of them might try, aren't really able to help much; and the dynamics between sufferers and supporters can sometimes be challenging.

It's been said here more than once how different the world would be if everyone in the world could just experience a week, or maybe even a day, of CH, and if they never knew whether they were going to get hit again or not.  Researchers, politicians, doctors, friends, employers . . . everyone would be a lot more interested in a cure, or at least better treatment, than they are now.

Again -- thank heaven for ClusterBusters.  For the brave and committed people who started it, for the good folks who stick around to share and support, and for its work toward understanding and treatment. 

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Elly,

Well said and the only people who could get offended I think are those who are naive to what sufferers and supporters go through.  Personally, I don't want anyone to see me when I am battling, I tend to hide wherever I can.  Kills me to have one of my children ask me...Hey Dad, does your head still hurt?  I thank God for my wife's support and my children's understanding that Dad needs to be left alone. 

Enjoy the pain free times!!

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I think that is one fine *supporters maniifesto* Elly.  8-)

Folks like you and CHf who get it and fully empathize with CH'ers are really like some kind of saints to me. Official sainthood nominations coming up, now where are those pesky application forms?  ;D

I figure when your partner has attained some extended remission, there will be an additional great side benefit to the busting treatments, which will be the likely alleviation of any PTSD he might otherwise have, allowing him to resume normal life as if the CH never happened. Sorry that it won't help with any ptsd YOU may have incurred from the experience though!  :o He may have to share his truffles with you. :D

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Elly,

You are wonderful, and don't forget it! [smiley=thumbsup.gif]

Your desire for "venting" is a direct result of how deeply you care and really want to help the CH sufferer in your life.  Oh, we all need someone as understanding, hard-working and capable as you are.  Those of us who do (and I am one of those) are greatly benefited by what you do.  I've seen my wife cry with me, run red lights to get me to the O2 and stand up to the doctors to help me get my way.  You ladies are incredible !!!

Your efforts and simple acts of "being there" have elevated you to "Angel Status" in my book.  HURRAY FOR SUPPORTERS ...... YOU ROCK! [smiley=engel017.gif]

The one true freedom we all have is the capacity to create any attitude we wish, about any particular situation.  When dealing with these crappy Cluster Headaches, is all to easy to be ignorant and uncaring, when the sense of hopelessness and pain cannot be avoided.  Those who choose to dig-in and fight with us, can certainly get a little "rant" when they need one.  You are a VERY special breed.

Thanks for ranting ......and NEVER stop

Wishing all the days to be PF

weatherman

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Elly,

While supporters do not have the CH pain, they certainly suffer supporters pain!!

To enumerate the pain I see my supporter live with:

Watching me in agony and being asked to 'Go away, please. Don't look while I am suffering! You can't help and I am embarrassed.

Trying to reach out to me and hearing ' It hurts more when you touch me or talk to me! Too just listen focuses the pain and increases it!'

Having to do the cooking and see me not able to eat anything!

Seeing my self esteem go down the drain for months at a time.

Living with me when I have little joy in life, no matter what he does.

It is horrible to want so desperately to help and all help is being rejected!!! Initially he was so angry and blamed himself. He had no outlet for these awful feelings of impotence to stop it or take it on himself so I would not suffer. It must be like watching someone you love dying a little each day.

My husband was my savior when he went to the neuro with me to convince said dr that I really was in agony. After all, as a woman, I must have migraines, not clusters!! >:( He supported me during the times when I took horrible drugs for relief that did not come and when I trashed said meds. He took me on vacation to lower altitudes for relief and loaded the tank of O2 for the return trip home when we both knew it would be needed. Perhaps the best gift over the long haul was never chiding me for spending so much time on this site, ever!!

I can only imagine his pain, as he can only imagine mine. It creates a divide that we have managed to conquer in the most part.

He is my angel and love, as you are Jan's. Were I to go thru this alone, it would be ten times worse. I hate that he has to take over, manage everything, and stay calm when this horror takes over our lives. I don't know how he copes, but I thank the powers of the universe that he does it so well. We have learned to celebrate the victories together and forget the lost months of barely living.

I love the support you have showed your partner and understand the sacrifices you have made. There must be a special place in heaven for supporters. Remember, you need the relief of venting just as we need the relief of pain. :)

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Thank you all for the kind responses, it really given me a warm feeling  :)

I know everyone here has his own way to deal with it all and a lot of story's I've read we're all so recognizable.

Your response has given me even more motivation and I'm so glad that we, the supporters of sufferers", really actually do help!

Thanks again all [smiley=kiss.gif]

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Well, today, my colleagues and I are having a Christmas Brunch.

I'm looking forward to it and on the other hand I feel somewhat guilty. I know I need this break but I also know Jan needs a break.

He told me I must go and enjoy myself but it's the day after the bust, I don't know if he will get the slap backs so I don't feel very comfortable to leave him alone.

But....I have to trust he will be OK, so even though I'm a bit reluctant, I will go and hopefully enjoy myself.

Feeling a bit selfish though.....

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Hey Elly,

I used to be a carer. I was once married to someone with mulple-personality disorder (6 personalities that I knew of), borderline personality disorder and a list of ther disorders as long as your arm. I used to get seriously burned out supporting my partner, and was having near constant migraines much of the year.

I too felt guilty whenever I took any 'me time'. But eventually, I started to get resentful of not having me time. And then when I did get me time, it was from an attititude of 'she owes me, me time'. That is a very bad place to be for everyone involved.

Caring for yourself is just as important as caring for your partner. If you give 100% of yourself to your partner, there will be nothing left of you. Yes, clusters are bad. But if you're there or not, he will get through it.

On the flip side, taking some 'me time' to socialise with people who don't have clusters will recharge your batteries. It will make you stronger for those times when he needs you most.

I know if I were in a relationship, it would be very important to me that my clusters do not consume my partner as they have consumed me. I couldn't do that to another person. So ask him how he feels about it, and if he says you need to have your 'me time', believe him.

Stay strong. Putting your partner first doesn't mean you can't have some time too. First does not mean 'all'.

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After almost 3 horrible weeks, there's finally some "normal" living back in the house.

Don't get me wrong, I fully understand the hell you sufferers live in and I definitely don't want to seem like I know what you're feeling because I don't! I'm just a partner of a sufferer and trying to help any way I can.

But.....after the last couple of weeks I need, I have to vent, I'm sorry about that.

So here's my frustration written down.

- I'm so tired of people that don't understand what CH is.

- I'm so tired explaining over and over again that I'm not an   insensitive person just because I'm not sitting by his side during an attack. It hurts me too but he doesn't want anyone around while having an attack!

- I feel so useless seeing him suffering and not be able to help!

- I' m angry when people say that "everyone has a headache every once in a while", and than look at me as if I'm exaggerating when I say it's more than just a headache.

- Sometimes I'm tired to do everything alone when he's getting hit all the time.

- I'm angry because all the neurologists he went to, don't know what to do anymore, he's just a "rare" case"!

- I'm hurt because he's a victim of this condition.

And please dear, don't tell me you're doing fine when I can see your not!

Don't tell me not to worry, because I will anyway.

Don't tell me I'm better of without you so I can live a "normal" life!

Please don't feel guilty when I cry for you sometimes.

Let me deal with this horrible condition you have, my way!

Sorry if I offended somebody, that is not my intention at all.

I just needed to get this off my chest....

Elly

You sound an awful lot like my wife did before i started busting. She was like this for years.

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Well, today, my colleagues and I are having a Christmas Brunch.

I'm looking forward to it and on the other hand I feel somewhat guilty. I know I need this break but I also know Jan needs a break.

He told me I must go and enjoy myself but it's the day after the bust, I don't know if he will get the slap backs so I don't feel very comfortable to leave him alone.

But....I have to trust he will be OK, so even though I'm a bit reluctant, I will go and hopefully enjoy myself.

Feeling a bit selfish though.....

as a sufferer trust him when he says for you to go and enjoy yourself, do not feel guilty - we do understand the need for our caregiver to have a break.

out of curiosity yo say if he should get slapbacks - does he currently bust?

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Hi all,

Thank you for your input, it's much appreciated.

I did enjoy the "me time" as Moxiegirl calls it and yes, when I was having a good time I realized even more how badly I needed it  :)

Jan was also happy for me that I'd had a good time so no more feelings of quilt anymore :)

@moxiegirl, thank you for your story, sorry to hear you were on both sides, must have been hard, you having CH and caring for your partner too.

@birdman, Indeed, you have to refuel every now and then.

@domino nice to read you understand what your wife must have felt and I promise, I'll trust him when he says I have to go out and enjoy myself :)

Thanks all!!!

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After almost 3 horrible weeks, there's finally some "normal" living back in the house.

Don't get me wrong, I fully understand the hell you sufferers live in and I definitely don't want to seem like I know what you're feeling because I don't! I'm just a partner of a sufferer and trying to help any way I can.

But.....after the last couple of weeks I need, I have to vent, I'm sorry about that.

So here's my frustration written down.

- I'm so tired of people that don't understand what CH is.

- I'm so tired explaining over and over again that I'm not an   insensitive person just because I'm not sitting by his side during an attack. It hurts me too but he doesn't want anyone around while having an attack!

- I feel so useless seeing him suffering and not be able to help!

- I' m angry when people say that "everyone has a headache every once in a while", and than look at me as if I'm exaggerating when I say it's more than just a headache.

- Sometimes I'm tired to do everything alone when he's getting hit all the time.

- I'm angry because all the neurologists he went to, don't know what to do anymore, he's just a "rare" case"!

- I'm hurt because he's a victim of this condition.

And please dear, don't tell me you're doing fine when I can see your not!

Don't tell me not to worry, because I will anyway.

Don't tell me I'm better of without you so I can live a "normal" life!

Please don't feel guilty when I cry for you sometimes.

Let me deal with this horrible condition you have, my way!

Sorry if I offended somebody, that is not my intention at all.

I just needed to get this off my chest....

Elly

i would just like to say good on you !!!!! iam a suffer of ch and i have great family around me but i know sometimes they get distressed with the fact that they cant do anything  for me when i am in such pain.i have a new partner of 6 months and god love him he really did not know what he was letting himself in for but he is great holds me when i need it and leaves me alone when i tell him to but like you i know i know he feels helpless and wishes he could do more but just know we do love you and all you do for us and we do know we hurt you sometimes with the things we might say but we could not get through it without your support  :)

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I am so frustrated with my family and friends right now.  I feel that, although they all want me to feel better, they are inconvenienced once again.  Yes, my husband goes for my 02 refills and my mother calls every morning to ask how my night was, but no one is actually trying to do what I ask. Knowing for 20 years that sleep is the enemy for me, my husband still harps on me to go to bed earlier, brought me a $150 pillow home the other night so I can sleep even deeper, and told me to put on really comfortable pajamas.  He them proceeds to rub my back and tells me to stop thinking about them and they will go away.  Last night, he said that I should read a book at night instead of being on this website because all I do is live and breathe these headaches.  He has been to the doctors and watched cycle after cycle,  but he is a "know it all type" and always has a new suggestion. "Wear my CPAP, take seeds every night since they make you sleep, stay home from work and relax/nap, etc".  I asked him, as well as my whole family, to be very patient with me.  I know I am being short with them because of the lack of sleep and pain at night. While they sleep, I am in hell.  I asked if they could please not offer any suggestions, but rather be a sounding board for me so I can let off a little steam.  I cannot take this out on my prek children at school or co-workers and I try not to lose my temper at home, but this is impossible at times.  So I apologize before hand and tell them I love and appreciate them, but I only need them to try to be understanding. I still go to work, take care of the house, provide some meals, get them everything they need, and am preparing for Christmas.  They still snap at me, gang up, and make me feel like I am a crazy person. I am not perfect, but I am doing remarkably well for what I am going through.  I have not inconvenienced them in any way, I don't bother them in the middle of the night, and I try to live as normally as possible. I don't need for them to do anything for me except be patient and understanding.  My best friend just called and I told her how badly I am feeling.  She said everyone is only trying to help and I need to be more understanding. She said that I need to be more patient because I am putting them through a lot. When I mentioned the fear of sleeping and my husband with the early to bed comments and pillow thing, she told me that I am not thinking rationally because of the lack of sleep and there are a lot of worse things going on the world.  I am sorry, but I expect my husband and life long friends to know my disease by now.  I certainly would not cook him up a beautiful dinner of steak, shrimp, and ale while he is suffering from his gout. I get that they all want to help but I am crying out for specific help and they are all unable to do this. Although I appreciate you all here at our second home, I am feeling really all alone right now. :'( :( :-[ :'(

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Having an invisible disability is like being in an abusive relationship.  Your body physically abuses you.  Due to ignorance, the medical profession, friends and family are emotionally and verbally abusive to you.  We have to spread awareness and stop the cycle of ignorance. 

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Last night, he said that I should read a book at night instead of being on this website because all I do is live and breathe these headaches.

Well I've heard that sort of thing too, and of course it was very wrong, because being on the websites and learning about how other CH'ers had taken matters into their own hands, how they were beating this thing, was how I found out how to much more successfully approach it myself. It was a lifesaver.

That's not an easy thing for others to understand, since the ordinary approach for a malady is to consult a doctor, follow the instructions given, and take your mind off of it, as too much researching on the subject can be counterproductive and obsessive. It's just not the case with us though, since most of us really have to take charge of our own treatment, and we have to be really well informed in order to do that.

I hope that venting here here will help ya, this is a good place for it, and of course you're not really all alone, your HF (headbanger family ;D) is here for you.  :)

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Jackie -

This website has always been a healing place for me, it is essential. Spending time here helps me more than anything a doctor, partner or friend has ever done for me (with the exception of the doc who first gave me O2). We are a strange family. See if you can make it to the conference in Chicago next year. I went to my first one this year and it is one of my all time favorite experiences. This family understands.

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I also feel that this is the only sane place during cycle. Everything I have learned has been from here and our sister site. The medical field has been a waste of time. We are all learning as we go and eventually it will all be figured out...leaving the docs and insurance companies in the dust. I did come to Chicago a few years back, but only attended the conference for one day. I met a few people who were really nice, including Dr. Andrew and Bob. I really want to attend, but September is tough being that it is the beginning of the school year. I'm sure I can do Friday to Sunday if I plan early enough. I am so tired and have to work at 8:30 am but don't want to close my eyes. It is 1:20 am and I am actually contemplating staying up. That can't be good either. Hugs to all!

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Jackie,

It's good to vent isn't it? Although I'm not a sufferer, I can relate how you feel. Even I, as a supporter, need to explain over and over again what cluster headaches are.

No one seem to understand what impact it has on those who suffer from it. All the advices people give are mostly related to a "bad headache"

Cluster headaches are NOT headaches, although they are located in the head, it is not comparesing to any other sort of "normal" headaches.

I can understand your frustration and feel free to vent every now and then. It's good to get that extra stress of your chest. It's difficult enough to cope with the Ch's without defending or apologize yourself.

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Jackie - I surely can relate.  My wife is very understanding, but it is others around me that are having issues understanding the illness.  Especially in Denmark as we have the social medicines and everyone believes they can offer a remedy for the illness.  I am trying very hard to explain the illness to my nearest, but some still struggle to understand, hence I tend to hide and make it thru work when I get hit with a cycle.  I too feel this website has helped a lot, as people here sure can relate to what we are going thru.  I would never had learned about the seeds which I believe is the direct result of ending my recent cycle.  Hang in there and stay strong.

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