Hi gang,

I am so thankful for this board! I need to vent a little and share a revelation that I had recently.

Recently I have been feeling beat up by the constant HAs that seem to suck the life out of me. Cycles have been geting longer and longer; in 2009 I've had maybe a couple weeks of PF time total.

I am constantly in the public eye in my job - either in consultations with clients, or being in front of groups, media, seminars, etc. So I can't hide when I'm in pain, although on many days that's what I feel the need to do. Even so, I find coping strategies to manage, but when I get home I am exhausted after fighting the pain while having to be "on" all the time. The other day my vision blacked out for a minute after a particularly ugly attack and it scared the life out of me. That had never happened to me, but as we know, CH is a tricky beast.

I started the whole "why me" thing and then it hit me...I have absolutely had the hell beaten out of me for the last five years. In that time I managed to hold on to my career, complete triathlons, marathons, write a book, travel the world, and live a pretty good life. If I can do all of those things while fighting my daily battles with CH, then I must be pretty strong, as all CH sufferers are. Despite trying to train for an Ironman while fighting the highs and lows of a nasty CH cycle, I lost forty pounds and made it to the start line. Standing there was one of the proudest moments of my life; after fearing that my life had been stolen by CH, I found I could still do some pretty amazing things. Some training runs had been little more than walking like an eighty year-old man because the pain was crippling, but I tried to find a way to get my training in just the same. The race was the icing on the cake; the victory was looking CH in the face and saying, "I won't let you take my life away." 

We are a resilient bunch, able to cope with the kind of adversity and pain that most people can't even fathom, and we keep doing it day after day, year after year. I think this is amazing, that WE as a group are amazing, and that gave me some comfort. CH hasn't killed me yet. I have taken many severe blows that CH loves to throw my way and I'm still standing, and that makes me proud. Realizing this, I felt better about things; and while my hits have been absolutely ugly this week, it's amazing what a difference it's made to look at it this way.

So let me toast all of you, some of the strongest people I have ever had the pleasure of coming across.

Anyway, just wanted to share that. I'm in awe of all of you on the board who live through this every day, and while we live through it I wish we didn't have to; so with that I wish you all pain free days and nights.

 

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I am crying here BC battler.  I am so proud of you my friend.   I SO wish every newbie would read this. 

12 years ago I had stockpiled enough meds to do away with not only myself but probably the 7th fleet of the Navy.
Then I found this place and it changed my life.  I now try to help others in dealing with this and your post has helped me to help others.  Since you posted this in a public forum, I hope you won't mind if I copy and paste these words to those I come in contact with through Family services.
         I believe everyone needs to hear this.

GOOD on you.  !!!!!!!!!!!!!!!!!!

Linda

Paul, nice to meet you.

  Barry

Hiya Paul....proud to be in the same family with you.

There is very little good to be found with ch...but what those are...well...

NO WAY any human can survive this kind of pain...no way...at least that's what I thought...NOT any more...

Retain your sanity? With THIS?...not possible. Actually MY proudest achievment...I may be nuts...but it has nothing to do with ch....

Pain?...broken bones, torn muscles, cuts, traffic accidents, GUN shots, face plants, burns, you name it....we have to be careful what we tell docs...they don't get it...pain?...that's not pain...let me tell you about pain...

FAMILY....THIS family....nothing like it. I am overwhelmed on a daily basis by this family. More than a few tears here....more than a few times...

Your eloquence is touching...your resilience is affirming...your battle is to be admired...ROCK ON BROTHER!

Best,

Jon

nice to meet you paul. man if your in the public eye and you can play off an attack you got my respect brother. i have a hard enough time playing it off when im driving down the road. thats gotta be tough. welcome to the board. the initiation sucks but the people here are awesome. hope you stick around a while

I have LOVED reading this although I think that the criteria for diagnosing CH has to be changed now.

"Leaky eye on reading other ch'ers posts" seems to be an autonomic symptom the majority of us have, after all, we're not namby pamby wusses now are we?!

I can crush a grape with my bare hands while jumping off a dolls house. There are no limits to my intestinal fortitude (but don't you DARE bring a spider near me or so help me God, I'll squash YOU!)

You said you lost vision for a minute - Although I would make a mental note of that and do something if it happens again, I think that's probably a result of the stress of coping all the time. I know sometimes that "dealing with it" is unavoidable for you but don't do it with every attack or you're putting far too much stress on yourself. Don't forget our "stand by band aids" of strong coffee and energy drinks, use them all you can as it's usually acceptable to do that much at least!

Also, I don't know if you have heard of Frovatriptan, it's a triptan in pill form so pretty useless as an abortive BUT - it's a little beauty! The fantastic thing about Frova is it's extremely long half life, up to 26 hours. I have had up to 17 hours PF time on it. It's no good as an abortive really but it's fantastic at blocking hits so well worth using for high pressure days or even to just get a nights sleep.

It IS a triptan so you don't want to use it daily, it does constrict your blood vessels after all, but it's well worth knowing about and having in your armoury. Oh and you can still use two pills in 24 hours same as other triptans. I personally wouldn't use it for more than three days in a row without a break but it's not my call what any one else does!

Hope that helps a little - and post more often would you? We could absolutely use your input around here!!

Helen

Awesome, Paul,  Just awesome!!!!!!

I never thought of myself as strong,  because CH has beaten me down so many times, making me feel weak,  but maybe I can be considered strong after all.

thanks, and it was great to read your post

Christine