A.

You can get busy living between the hits, or get busy dying between them. Val's a perfect example of living between the hits.

There's no joy in option B.

Good for you, Maria.

I have had this dreaded condition for 18 years, and I have missed work twice because of it - both times having been hospitalized for IV DHE treatments. Other than that, I keep both Amerge and Maxalt in my briefcase, and two E-tanks worth of O2 under my desk.

Notice I don't call it a "dreaded existence" - I have little dreaded interruptions in my wonderful existence. There's a difference.

Hi ALL - I too had to quit work - after having CH for 4 years without the diagnosis, I went on disability.  The first thing I noticed was that the attacks got worse.  It seems like they like to creep up and give us something to do if we're too relaxed.  After a year I decided to look for a job to at least get some health insurance again.  I mentioned the fact that I would need to bring in an oxygen tank and that seemed to be the kill switch!  I finally applied for a job without telling them anything and got it in August.  I have been working full time ever since.  My headaches have decided to move into the off hours only, so they are working with me really well.  OK - some nights I might average one hour of sleep, and have to be in at 6:45, but I am determined to make it work.  Once I was in, I could introduce the oxygen and everything else that goes with accommodating me.  It has been great!

sylverstar wrote on Apr 25^th, 2009 at 4:05pm:


The beast LIKES it when you relax. It notices you relaxing, and decides to take a big ol' bite out of you.

I'm on disability for my other medical conditions, at first in my cycle yes, the beast WOULD have interrupted work for me, had I been going to it.

At this point? I've been in cycle for almost a year. I take care of my 2 nephews each weekday since January... I do not miss a day, and I treat the hits aggressively when they come. The 02 is more than enough so long as I get on it immidiately.'

Good luck!
pfdan
Mystina

I'm OLD and still go to work every day. When the beast decides to visit I hit the O2 and kick his rear and go back to work.

I LIVE between hits (I'm chronic) and don't miss a whole lot of nothin'.

You can give in to the BEAST or you can FIGHT... I have too much to do to let that jerk WIN, so I CHOSE to FIGHT.

And NO, it's NOT easy at times. But if you do it long enough, it gets to be routine and a part of your life. You just don't think about giving in - you just fight automatically. Took me a few years to figure this out, but I'm a slow learner. Think I finally figured out it wasn't going to get better unless I MADE it better. ATTITUDE is everything....

One thing I found is that MENTAL HALLITOSIS (stinkin' thinking) is your enemy. When you make up your mind that the beast is NOT going to win - then you're on the road to LIVING again, but it's got to be YOUR decision.

I was down about as far as a person can be down (Iwouldn't even go out of the house for over a year). But then one day, I CHANGED my attitude and decided I didn't want to live like that any more. It took a lot of doing, but I got new tires on my car (the old ones had dry rotted) and got out and went to the office, cleaned the cobwebs off my desk and said the hell with it - I'm BAAACK! If I get hit - live with it! (Ok, so I went to the kitchen during a hit for a while there, but after a while I just closed my office door and everyone left me alone till it passed  ).

I got involved in local politics and started going to every rally and meeting that was held in our area - even ran for office (that was a hoot). What I'm trying to say is - I CHOSE to get my LIFE back and did a pretty good job of it. There were a lot of people on this MB who helped me thru some really bad days (you know who you are). And NO it wasn't easy, but we got thru them and today, I'm still going strong.

What I'm trying to say (long winded) is that we're all a lot stronger than we realize, but we have to accept that we have a disease known as CH and it ain't going away, so we have to find a way to live with it. Our attitude is the best defense we have against it. No one except another Cher understands what we have - we have to accept that also - the sooner the better. Then learn to live with what we got and make lemonade with the lemons we get thrown.

End of sermon -- 

Hugs BD

Good for you...

Yep I have optic nerve damage and some days I can't see worth a darn out of my left eye, but the right one still works, so some days I just put a patch over my left eye and tell my grandson that Granny's a pirate (he thinks that's neat). But maybe I should rethink that one right now... with all that's going on in the world. 

Take it one day at a time sweetie and it will work out. Now go kick some Demon rear.....

Hugs BD