chronicclusterheadaches.co.uk

Sherri

You all know the cliche "The obvious is the most difficult to see"...I have found that to be true more and more now that I've become friends with and met another med-resistant chronic.

Reading Phil's definition of chronic, made me realize what I've known in my mind all along, but somehow haven't really acknowledged.

That no-one...I mean NO ONE, other than another med-resistant chronic gets me...STILL.

I still am justifying my survival mechanisms, explaining CH and apologizing for being in excrucitating pain to my family for or about the same things I have for a decade and a half.

And they are still getting angry at me for the same things, still making suggestions that are simply impossible for me to accomplish...and they can't see what's been right in front of them.

These are people who've actually seen me get hit...watched my life change, etc. My dad actually will ask "Do you have to bring that thing?", in reference to my o2 tank when we have gone out, and we're somewhere that I won't be able to get to the car quickly to use o2.

We went on vacation together once...to the Jersey shore. We stayed at a casino. So, when we walked into the casino, we get further and further away from the parking garage...I don't give a shit about carrying the tank.

It's a LONG, LONG distance to get to the car from the middle of the casino. I'd have to push through tons of people, not being able to see, or remember where I was going...I'd panic, which would make it worse -- then I'd have to FIND the car, etc.

I'd rather carry the tank, then get hit on the casino floor...thrashing around, yelling, upsetting and frightening everyone around me. And none of them will know what the hell is wrong with me...and they'll ask me what's wrong with me, and I won't be able to speak to tell them. I've given my father this explanation many times...I've asked him "Would you prefer dealing with me during a hit? Or have me carry this tank?"

And even if I was able to tell them what I was experiencing, they STILL wouldn't get it...or the extent of pain I was in. They'd think I was over-reacting to a "headache", or that Im just nuts.

Im just getting alot of clarity about this condition, by having someone else's point of view...that experiences it first-hand.

It's really a gift for us to be able to talk to others that really do know without explanation. That was a rant....thanks for listening.
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"Great spirits have always encountered VIOLENT opposition from the MEDIOCRITIES." -Einstein.

Ike · Posted: Mon Jul 21, 2008 9:09 pm Post subject:

I got you sister !

you never need explain anything when your here !
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If you dance with the devil the devil don't change, The devil changes you

Email me, Admin@chronicclusterheadaches.co.uk

phil h · Posted: Tue Jul 22, 2008 12:51 pm Post subject:

Last night after group , one guy stayed to ask me if I was having somekind of medical crisis......... he said during the last half hour of group my left eye teared and began to swell . He also said my speech seemed a little affected ........... He's never been in group when I've started to get hit ..... Maybe it's because it's an 8-9:30 pm group.... Not usual window to get hit for me . He also said he has never seen me with ice packs on my head at work .......................... I realized this guy never really has seen me bad and never really knew what was going on with me when group has been cancelled . There it is ... proof positive .. it's not all about me . As long as I show up and fill their needs some people don't even notice my stuff . He's a nice and compassionate guy , but has so much crisis in his own life that he remains focused on that ............... He didn't ask if the ch's are real painful......... just said that must suck .......... I think he may understand my feelings about this perfectly ..... It seemed soothing and comforting that he cared about me , but didn't really know what it was about............... :smt104
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"Suddenly a huge phantom bird sank three talons of its angry claws deeply into my head and face and tried to lift me. No warnings, no preliminary signs. Just wham! A massive, killing pain came over my right eye. " Frank Capra

Jill · Posted: Fri Jul 25, 2008 4:14 am Post subject:

It amazes me how clusterheads can understand each other in ways that seem impossible given that we have not met.. it is just amazing for lack of a better word.

I think that is what made me click, among other things, with Marty. He understood me and the pain that I felt in ways that my parents and friends could not. He never told me to get over it but instead was willing to work with me, find ways to deal with it and love me anyways.

It a hard thing to explain but parents always love their children but sometimes they just don't get it all of the way and I think that sometimes they push away the problems so as to not face them. If you do not acknowledge that something is wrong than you can ignore and go on with life, right?

That works for some but not for the person who is in pain. Having someone who has been there, suffered and understands helps a lot.

I am rambling now. Sorry. There are times like this when my head really hurts, sleep is hard to come by and nothing is working to ease the pain that I just want to be with him, to feel his embrace and not have to explain or justify anything. Soon I know.

Anyways, in all of this rambling.. I just wanted to say that it was amazing how cluster heads are.. hugs to all!

Jill
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What lies behind us and what lies before us are small matters compared to what lies within us.
-Ralph Waldo Emerson