6 Words I Hate

[MoxieGirl]

Apologies for this short rant.

6 words I hate: 'I don't know how you cope.'

My well meaning friends often say this to me, and it only serves to remind me that I don't know how I cope either. And in fact, I opened up to one of my friends this evening who said it to me, that, one way or another, I plan for this year to be my last year of having to cope with this battering of clusters.

When she inquired more, I explained that if my current plans for stopping don't work, then I have a date in my mind when, well, that will be the end.

So her next set of words that I hate were: 'You're not alone, we are here for you.'

Although I didn't say any of this, the truth is, they are not there for me. Not when I need someone to be there for me. I know they love me, and are concerned, etc. etc. But they aren't there for me. In fact, no one is. So it winds me up when people pretend they are, or try to make me feel better with an illusion that isn't true.

So, what do your friends say to you, meaning to be helpful, but really just winds you up?

Renée

[davidj]

Renee,

They say way to many stupid things to even begin to list though many have tried. The only people who truly get us are those on this site. We had a thread going last year with a list of well meaning or ignorant things we have heard over the years. Even my wife who has been a wonderful support over the past 15 years has said some things that as you put so well "wind" me up.  I hope that your line that if this doesn't end then you have a date in mind to end it is said out of frustration. There is hope for us as Bol 148 becomes a reality and we to quote AO the "citizen scientists" continue to experiment and share our success's as well as our failures. Please remember that we at this site are truly here for each other and reading the various stories people write and members responses I know this to be true. I wish you PFDANS and hope that you find some relief soon.

David

[Pixie-elf]

Honey, my psychiatrist has flat out told me he doesn't know how I cope. My response was "I have no idea how I'm coping either."

(And several of my other doctors have commented on the same thing. No one knows how the hell I'm coping.)

Y'know what that really means?

That they think you're strong. And that they think that they themselves could not handle being in your shoes. I've had people telling me that stuff since I was 12. I've learned to take it as a compliment.

If they're saying they're willing to be there, have you tried reaching out, and telling them what you need from them? If they can't give you what you need then.... yeah, it's FACE PUNCHING TIME.

Renee, I don't know what all you've tried, but before you go with that option, I'd try everything out there for them. To quote a poem "Do not go gentle into that good night.

Rage, rage against the dying of the light."

There's got to be something out there that will help you. If your doctor can't help you, you should get another. I know someone mentioned another hospital to you, try anything. Your life is valuable, you are a valuable person, and this world would be a much less lively place without you in it.

Mystina

[MoxieGirl]

Thank you both *wipes eyes dry*

A handful of months ago, when I started to plant a date in my head when I could no longer cope, I turned to this site. And this site has given me much hope.

My last cluster was last Monday, this is Saturday morning. That is the longest I've gone cluster free in months and months. Which I very much attribute to busting.

Apart from busting, I have tried just about everything. But I haven't sorted out O2 yet, and I do know there is the medical centre in London that I can get myself too. I also know Bol is probably on its way as well. So I haven't given up hope yet, and am still fighting.

And, this potential date in my head is somewhere in Novemeber, so I have time yet.

But, still. Despite everyone meaning well, I am single and live on my own. And although part of me knows clusters are hard on partners of sufferers, I also know I would do a lot better if I had someone in my life to help me through all this. Not at a distance like my friends are, and I mean a physical distance not emotional.

So I know something has to change this year, because I have a good idea how much longer I can cope with this, as it is, on my own. I had over 260 clusters last year, and I know I simply can't do that again.

And very true your comment Mystina, about my friend's comments really meaning that they think I am strong. I hadn't really thought of it like that. For me, it just reminds me how bad they are, and how I don't know how I'm getting through it either.

I have hope. I do believe this is going to be a better year. I don't believe I will ever reach 'that date', but still, it is a date I'm unable to shake free of. And also, perhaps, in my subconcsous, it is a safety gap when things get really bad. By setting the date way out there, I have a target. All I have to do is get through this until that date. And probably as the date approaches, I'll set a new date, equally far into the future.

Anyway, I've rambled on enough. Thank you for your comments.

xx Renée

[Brad]

Hi Renee.  During every cycle I can remember  thanking myself for not owning a gun.  I can't even fathom how many times that dark thought has run through my, searingly painful head.  Have you tried the D3 regimen (with fish oil and cal cit), yet?  It has worked wonders for me and I have found that eating Vit K2 containing foods like hard cheeses (romano) and fermented foods (sour kraught) along with a list of others, helps with proper transport and absorption (kinda like a buddy messenger system).

I have finally started my Wellness and Sports Nutrition course on Monday, so I will keep everyone posted on if and when I stumble upon anything useful. 

Never give up and take back control of your life. 

[Pixie-elf]

I bet it is the busting, and your pain free times should get longer and longer. I was at the end of my rope too when I found this board.

I was at the point of "If this doesn't work I'm putting myself in the mental hospital so I don't kill myself." Because I have people relying on me. I've also seen up close and personal what suicide does to a person's family... And I cannot ever do that to mine. Not in a sane mindset anyways but during a K-10 it becomes a compulsion. Anything to stop the pain. Anything.

That's my fall back plan. I don't know if it would work... but I feel like I owe it to the people who love me and who I love to try whatever I can to survive.

I've almost been busting for a year, and it wasn't until last June or July I finally learned that Low Cycle REALLY existed. (I thought it was some kind of myth... until it happened to me.) But first, I had small breakthroughs like you. At first I could just feel something happening to my trigeminal nerves. Things got better slowly but surely.

If it can happen for me, it can happen for you.

The way I feel is... if you're coping, you don't have to know how. If it's working, just be thankful it is. Maybe when whoever created us was giving out coping skills, we were all in the line for "SUPER COPING SKILLZ!"

I hate that you don't have people to sit with you there. Physical distance sucks. *hugs*

You can, and WILL beat the beast.

Mystina

[razorPP]

Renee, hello, my fellow ch'er. damn the beast can tear us down, i'm having bad thoughts the last few day, I'm tired, took the ice pick out of my eye this morning and logged on to find you, Renee, posting about what i'm thinking, humm, how's that work, your words about you and what other write relates to me, your post starts the cb community coming to the aid of us thinking about what your thinking, so i come here to read, get hope, and be understood, your post and the post of others like us, help me fight another day, through what ever means it take 02, rc & hbr seeds, d3, working out, busting. so thank you for you post Renee and busting will start to make a change in you. I'm holding on for change...

[spiny]

Morning Renee,

Once upon a time, my 11 month old grandson died. In my house. During the night. His mother was 21. They were living with me.

I said to her "Oh my God Sweetie, I can't imagine how you feel or the pain you are suffering".

She looked at me and replied "I thank God that you can't Mommy".

That is how I cope with those who can't possibly know. I thank God or the Universe that they CAN'T know.

As for the platitudes, let them go. People don't know what to say, so they say stupid, well meaning things. Try to imagine the many cliched, ignorant, but well meaning things that were said to my daughter and me at the funeral for an innocent baby.

Always remember your own, your child. Be there for him. Let the rest go and be glad for others that they DON'T understand. Would you wish this on one of your friends? No. Of course not. On your son? Never.

We cope because we have to. We cope because we are resilient. Down days, we don't cope so well. Up days, we do better. Reading your blog, I have seen some very good days for you in the past month or so. Go back and read it yourself. Remember those days and your feeling of accomplishment. Stop counting the number of Ch's you have daily, weekly, yearly. Start counting the number of PF days, weekly, monthly, yearly. I think you are already off to a better start for 2012 than you had in 2011. Focus on that. Go ahead and be angry about the bad days, but don't FOCUS on them. You will feel better. You will be better able to accept the platitudes and well meaning statements of friends. Just understand, they don't and can't understand or identify with your condition. They can only compare it to what they personally know of pain and despair.

When they voice the comparison, you probably want to put the Hex on them for an hour so that they can compare apples to apples. I know that I do. But, it would be rather evil to wish it on anyone other than an incompetent Dr - all docs should have to experience the pain of the diseases they try to treat and the misery of the meds they dish out.

By the way, damnit, get the O2 setup!! > Then you will have a love affair with your tank when you are all alone. It will save you, cause you won't be alone and it can provide relief that no girlfriend or boyfriend can, no matter how much they want to. It will shorten the pain time and intensity. So, be the 'go getter' that you are and go get it.

spiny

who once again is angry with the docs of the world.

[davidj]

But, it would be rather evil to wish it on anyone other than an incompetent Dr - all docs should have to experience the pain of the diseases they try to treat and the misery of the meds they dish out. 

AMEN Spiny

[IndianaJohn]

I know what it's like to "set a date".  I have often contemplated grabbing my rifle and taking that long walk down to the river.  It isn't worth it.  I know it hurts.  I know it's heartbreaking to be alone.  It's even harder when you are not actually alone, but still feel that way.  You are blessed Renee.  You have friends that love you.  That's more than I have.  I am blessed to have my wife and children, but they haven't always been supportive and I can't always count on them.  So I know what it's like to be alone and having to deal with CH.

Get the O2 set up going.  Make it a priority.  Get help with it if you need to but get it set up.  It makes a huge difference.  I tried O2 in the past and it never worked for me.  I have had neurologists tell me that O2 would not work for me because I am a smoker.  After some prodding by CHFather and Spiny and others I gave it a try.  Guess what? IT WORKED!

Keep your chin up honey, you can beat this.

John

[Bonkers]

Awesome post, spiny. Thank you for writing it.

[Brew]

You may not have to set a date, according to the Mayan calendar.

Seriously, I only have one true friend in this world. It is my bride, whom I've known since I was 5 years old, and who has been my wife for what is now our 30th year.

She doesn't have to say a word to me. All I need to do is look in her eyes and I know how painful my ending it would be for her. Because I know how painful it would be for me if the shoe were on the other foot.

I keep pushin' for her. Because of the joy she has brought me, and I for her. I'll let God decide when my time has come.

Or the Mayans.

[MoxieGirl]

For the record, I've had 22 clusters this year, and, and it is Jan 21st. So, on average, it is worse than last year. But, the 5 days cluster free has been a welcome relief. May it long continue.

But, I won't be able to bust again till Wed at the earliest.

As for suicide. I have lived with depression all my life, and have had sucidal thoughts from very, very young until I was 40. The reason was my gender dysphoria. At around 40, I got that sorted out, and the depression left.

So I know about seriously considering that option, although I have never attempted it. Why? For the very reasons many of you mentioned. I had people depending on my, namely my son when I was a single parent for many years.

But at the moment, I don't have any people depending on me, and my son is grown up.

I think of it like this. When you have to remove a bandaid (plaster), you know it is going to hurt for that few seconds you rip it off. But you also know, that when it is over with, it will stop hurting. Yes, I do think about the people I would leave behind, but I also know when it is over with, that will no longer matter to me. The pain, all pain, will be gone. I won't care then. I won't have the stress of carying it all, of coping, of hurting, of being afraid of the hurt. So for all the reasons for not doing it, it is a selfish act, I will leave people behind - none of that will matter afterwards.

And yes, that is increadibly selfish. I know that. When I was suicidal all my life, the reason I never did the deed, was because I wasn't selfish. I put other people before my desires. The reason I transitioned from male to female, was so I could still be around when my son grew up. It wasn't easy, and it cost me more than anyone knows. Someone without gender dysphoria trying to understand how hard it is, is just like someone who's never had a headache trying to understand a cluster. You can only understand by experience. And it is an experience I would never wish on anyone.

I'm babbling on now, so will stop. But, I've done the whole not doing it because of others before. I fought and won that battle once. It's not fair I'm doing it again. Just not fair.

Renée

[Bonkers]

My kid's gotten hit more than 22 times - this week! and he isn't considering suicide. Why? Because of the pain it would bring me, his mother and his sister. That's why most people don't. That's enough reason not to. That their pain wouldn't matter to him afterwards is a complete cop-out. Their pain does matter. Especially if you're the cause of it. Suicide ruins entire families. The survivors never get over it.

I'm sorry you're suffering so. I can't imagine having CH on top of gender dysphoria resulting in gender transition. It just seems to be too much to ask anyone to bear. It isn't fair. But that's exactly what's being asked of you. You can bear it because you have borne it and are bearing it this moment. You just have to keep doing what you're doing till the sun comes out. And you know it will.

You might ask your grown up son, who no longer depends on you, if he thinks it's a good idea.

[MoxieGirl]

I want to it make very clear, I'm not considering anything rash - soon. And haven't completely decided upon this selfish course of action. I have only been thinking about it, and set a rough date at the end of this year, as a target date where things need to change by.

And I am working very hard on things that will make this unbearable situation bearable. I haven't given up, I am a fighter.

But I do know, very well, my coping limits. And if I don't find a solution this year, then I know my ability to cope WILL run out.

I do still have several things to try, and busting seems to be making an improvement. So this hypothetical date in my diary will hopefully NEVER come to pass or come into serious planning.

Also, I do have many close friends. And although they are not physically supportive of me during attacks, they can't be. I do know they will rally around me if they sense, I'm in serious trouble, even if from myself.

Perhaps, in a messed up way, setting this date is my light at the end of the tunnel, that keeps me going until I find a better light to follow. Picking myself up after an attack is a bit easier if I can tell myself that I have an out when they get bad enough, if I can only make it to a particular date. Also, I'm not beyond moving that date even further back when I get close to it.

So please, don't panic for me.

[Pixie-elf]

(I was writing this up while you posted yours, and it posted mine and I didn't see you'd updated....)

We can't help but worry for you hon, you're a part of our family!

Now on to my post....

Renee, I'm a 27 year old woman. I still need my Mom. I still needed my Papa (Grandpa) when he died when I was 25. He was my father figure, the man who raised me.

I would have given years off of my life to have kept him alive for longer. I know that when my Mom's time to go, I'll make the same offer to God. To beg him to take something from me instead, anything.

You don't stop needing your parents because you're grown. If something has happened with you and your son... reach out to him. He could turn out to be someone who would help get you through this.

Before you turn this idea down... I get that you don't want to share your life because it'd be hard on someone else... but you have got to get over that.

I know you don't want to feel like a burden... But tell me, is it a burden when you help someone out, and make THEM feel better? Usually no... it makes you feel better inside.

Just because you are in horrible pain, and it's scary to see, does not mean that it's going to break the person seeing it. I know it feels like it will, but trust me...

Yes, my Mom is scared horribly at times during my really bad hits, but the fact is, she knows she can offer me comfort by being there for me. If nothing else, I know I have her.

Does your Son live anyplace near you? Or is there any chance you could go stay with him for a while? Just wondering...

I could go into what all it would do to your son if you went with suicide, but I think you have a good illustration from Ron. Suicide, while over quickly for you, leaves everyone else a wreck. I can tell you exactly what it did to my God-sister's family.

If nothing else, Renee, let us support you. We might be far, but we care. I'm sending you love and well wishes. I wish I lived in England so I could come over and give you a hug.

[Brad]

Have you Tried the D3 Regimen,yet?

[tingeling]

Hi

I know what you mean and i have been provoked, sad, irritated and so on more than once. One friend very recently said to me "i wish it will just go away one day". I explained how this kind of thinking works the opposite way for me. If i should go around thinking like that, every day wishing and hoping it would go away, every fecking day would be a slap in my face, and with that slap comes anger and grief over time. But of course, i did hope for this everyday for the first 6 years. No wonder i got depressed. I hoped for the next day, then next week, next month, next year and even next seven year, cause i heard your body changes every seven year So i told my friend i started to work towards happiness in a different way, wich lead to inner peace. I have never been better or happier. Her answer to this was "well, as long as your able to imagine yourself being happy without being it then it`s better for you than feeling sorry for yourself." LOL ;D I didn`t spend time trying to explain more. As long as people haven`t experienced being pushed this far into a corner, it is hard and impossible to understand what that person needs. When i wanted to commit suicide, i was thinking i better tell someone, i did and the aswer from this person wich is in my close family said "and what did you think i could possibly do about that?" I said "nothing" and she said "exactly." Other people being inexperienced or simply just not very bright or whatever, does not define you. You define you. Only you got the power to define yourself.

What was one of my tools was and is this board. The people on this board is really here for you. When it`s night where you are, it might be day another part of the world. Or maybe a fellow buster is awake with you? More than once i experienced this. We feel isolated and alone sometimes, often i actually just open my computer and the board and have it open so i can see the board on the screen. Sounds weird maybe but it is kind of nice, cause i know many of the other members are doing the exact same thing. Your one of the people on this board, so you contribute to my happiness in life. One member on this board i often had my morning coffee with her for a long time. That means i drink my morning coffee while i email her or read trough an email she sendt me. It`s really nice Stick around and let us get to know you, there`s always a listening ear in here, and maybe you could come to the next conference and meet us all That would be nice as well

My best

Tingeling