Hey all
I just looking to share. I am finding it hard to get to a point of "acceptance" being diagnosed last week with having cluster headaches when I was being treated for hermicrainia after a cluster cycle dec 09. I guess I have been chronic since Dec 09 and now the reality of the possibility of being chronic cluster. I guess I am reaching out to share and to get some support. Thank u all and pfw's to all
Anthony

What do you kids know about ailments, anyhooo?<bg>

Few months ago, I moved into a retirement community where the average age is 83, the range is 70-100+. A remarkable quality of the culture here is the absence of moaning about illness, impending disability, even death (which tends to be part of the package living in a place like this!)

Regardless of the age, I've never been with a group of adults who are so engaged, content, good humored, and forward looking.

Yesterday morning, quite early, ran into a new friend who has serious vision loss. Reading is difficult, even with the specialized equipment we have; he had to give up his car a few years ago. One of those quiet times when we could talk privately, with privacy, so that he could say: How at peace and contented he had found himself when he came to accept these changes, realizing that he had so much of himself remaining. His newly focused skills (which were always a part of his working life) revolve around being quiet with others who need his hearing...the need of the lonely, the isolated, who need the very capacity he still has.

A short time ago, a former student, barely 60, had an accident which has left him a quadriplegic. Beyond the quite limited gains from his physical therapy, John told me that the greatest gain has been to rediscover who he still is, what he still has to offer, the quality of being which is still his.

These are not the ordinary trials most of us have, or will experience. Even the "Bitch Cluster" has to be put into perspective if we are not to live in some dead-end spot.

But my friends have told me: No one could give them the way, the peace....

Hi Anthony.  It seems you have been on quite a difficult ride, in terms of pinpointing your ailment etc.  How to "accept" it now that you know you have CH (and possibly chronic)?  For myself I found that acceptance is being willing to have an experience, any experience including the unpleasant ones, but committing yourself to living a valued life....living and behaving in ways that are aligned to what you truly value.  With CH, we have a lot more ammunition to deal with it than we did 20 years ago (when I started).  So its not to say we can't be pro-active, we are.  And we can also remind ourselves that things "can be worse" and find inspiration from others (thanks Bob).  But after we have done everything we can do, that's where I think we need to be "willing" to experience things we don't like but are still there.   Because I fully believe that at such a point, the more we reject something, the more we resist it and want it to "go away" etc., the more negatively it will impact us in the end.   Instead, be willing to have it...then as soon as you can (when the attack ends or the bad feelings about having CH have subsided) go and do something that you like or that is towards your values in life.  Me, after a bad attack, I almost always end up playing / joking around with my 2 y.o. daughter...the same daughter who isn't allowed in "daddy's room" where I breath my O2.  Or I'll have a date with my wife during my PF or attack-free times, or meet a friend for coffee, or work on our family business plan, or play Wii video games (yes I VALUE leisure LOL ....anything.   

As for whether or not you are chronic, I suppose you can only do what you can do i.e. remind yourself that you may not be chronic (you have had remissions before, yes?), treat your condition best you can and enjoy your pain free periods.  I would think worrying and wondering or trying to control where your condition takes you may only create more unnecessary distress.   And whether chronic or episodic...it doesn't change your values, goals in life etc. right?

Take care
Stymie

All
Thank you so much for the great support and advice. It's all exactly what I know and where I know I will be just reaching out for this very reason. It feel's good to share and know that I am not alone , and I  know I will put my best foot forward to be the best man I could be! Again the word's of wisdom is priceless at this time and I am very appreciative for it all!!
Thank's again
Anthony

I am with you.  Definitely having a hard time accepting that I'm back in a cycle again (started a week and a half ago...6 more weeks to go hopefully).  I find it difficult listening to affirmations of those who don't understand what i'm going through, but reading this board...seeing how other people are dealing and the support everyone gives each other...I dunno, perhaps it's warms my soul a bit.  Stay strong everyone.  I'm trying really hard too.

I had a 6 week cycle, then 3 weeks PF in June, and now I'm 5 weeks into this cycle.  I am having a time with accepting that this thing can come and go as it wants.  This is only my 2nd cycle, and I was really thinking I would get more time off between. 

It really helps to be able to come here and read your post and know that there are people who know what this is like.

I wouldn't use the word acceptance however for a topic on ch it defiantly caught my eye. 

Acceptance implies a willingness to receive something in this case CH, no one in their right mind would willingly accept this affliction except to maybe protect a loved one from it.

I didn't willingly accept this affliction.  I have for the most part dealt with it to the best of my ability, and at other times not so much to the best of my ability.  You will have bad days, good days and days you would rather a bullet to the head rather than the pain.  You will lose friends, gain friends and make new friends.  Your loved ones will be tested some will pass with flying colors others will be found lacking.  You will have co-workers who don't understand and who will make snide comments that they don't think you'll hear; such as "she's got too much going on in her head that's why she doesn't talk to us."  When in fact you don't talk to them because they are shallow people who refuse to understand or even try to understand what you go through.  So they'd rather think you Weird, different, or a freak.

Mostly you will persevere because that is what a CH'er does we are a tough bunch and are made that way by what life has handed us.  There are still people in the world that I think have it worse off than a ch'er does and I sit back and admire the way they muddle through their daily lives.  God bless them.

CH isn't really something you accept, but something you deal with daily. (I am chronic so when I say daily I mean Daily.)  Like with most annoyances in daily life when I get a CH hit I deal with it and move on as quickly as possible.  I refuse to let CH rule my life. 

A CH'ers life is harder than the average person who has no major afflictions, since they have to deal with more physical and emotional pain than the average person.  But that only makes us stronger.

I was not going to reply to this post at first because I wasn't sure if I'd have anything worth while to say on it.  As is turns out I had more to say than I originally thought.  Whether it's worthwhile or not, I'll let you be the judge.

Remember you are more than your pain and that you have a Passel full of people who suffer with and support those who in their own small way make this world a better place in which to deal with CH.

P/F wishes to you all.

JustNotRight wrote on Jul 31^st, 2011 at 10:24am:



I guess call me out of my mind then

Everyone has to deal with this condition their own way, and all the best to you all, but for me I realized a long time ago that being willing to accept both the condition and the hits has afforded me a certain degree of freedom...from the endless mental turmoil of being caught up in each and every hit, from the thought trap of wanting something to not be (when its a reality that, for now at least, will not change), and to allow me to put my energy, thoughts and efforts into addressing what I can actually control and do to reduce the pain and impact etc.  It may seem crazy to some, and its not always easy, but for me wanting to control some reality we dont like, wanting to resist a still-incurable condition, getting caught up in it hit-by-hit and day-by-day, only magnifies its impact on my life.

Doesnt mean I welcome the condition, or the hits, or invite it in for tea


All the best and PFDs for all!

I accept that I have CH and have taken charge of my own knowledge of treatments. CH itself is and always will be unacceptable.

Don

well said wimsey!
That's exactly what I originally  meant
thanks
Anthony