Lauren17 wrote on Oct 29^th, 2010 at 9:33am:


With my head fealing good this morning (7.34am) I'll pass on the Red Bull (I don't know if I could drink it without a CH) but I've fresh coffee / tea / fruit juices to share with anyone.

Although this thread has been partially hijacked, it's really just shown how diverse a crowd we are linked by an understanding of being impacted by CHs.

Is it any wonder that some people just don't understand? Should it surprise us that others want to help by offering their suggestions, be it walking in the sun, tylenol, prayers, meditation, etc?

If anything, if people didn't want to suggest things, no matter how effective their suggestions are, then that would even more show that they don't care for us.

exactly

I don't want to beat a dead horse, but I need to right a wrong on my part, and I wanted to do it on the board, not just a PM...I feel bad that I didn't acknowledge Lauren initially for fear of opening up a can of worms and thinking I should just leave things alone when she wrote:

Lauren17 wrote on Oct 27^th, 2010 at 3:31pm:


I should have acknowledged that and said "no apology necessary but very much appreciated".  I apologize for my poor judgement...ok, let's put this puppy to bed.

I hope everyone is enjoying this GLORIOUS autumn day!  Fall foilage (who says the leaves have to be on the tree to enjoy them..my backyard is full of orange, red, yellow, and brown, very beautiful) the crisp fall air (at least in my neck of the woods), college football, a kettle of homemade chili simmering on the stove with some sweet cornbread in the oven...life is good!   Please find something beautiful in your life today, take a moment, and really appreciate it. 

Unfortunately for us sufferers/fighters of CH, we're trapped in a bit of a personal hell.

It's been 9 years for me and I think my wife is FINALLY starting to get it. I recently started on Verapamill and 'Trex injections, that seemed to make it hit home for my wife how bad it is.

It's partially my fault though since I don't want to remotely come across as complaining/whining because it could always be worse, so I've always done my best to suffer in silence, so to speak. Also, I've never really tried to explain it or educate her, it just seemed like too daunting of a task.

My mother quasi understands, she's been a migraine sufferer for 25 years. She knows that it sucks but she doesn't really understand the differences between CH and migraines. She was shocked when I told her I don't get sick to my stomach, nor do I want to lay down when I'm getting a hit.

It's a shame that "headache" is the way it's classified. Since there are headaches, then there's what brings us together on this board.

When people ask what's wrong and I say that I get multiple headaches in a day, they just look confused. It's the whole notion that headache=take an asprin/tylenol/advil and lay down, juxtaposed to what actually occurs when we encounter the Beast. Trying to convey that to anyone is too abstract of a concept.

I get what you are saying, Mel.  It used to frustrate me too.  That being said, once I thought about it, I really don't want them to know.  If they do know and understand, that means they saw me get hit and I prefer not to be seen at all during a ch.  Hell, I hid it from my family for almost a year.  Seeing that "look" on peoples face  upsets me because I can tell it upset them to see me that way.

Tell them you never want them to understand.  Understanding means seeing or feeling the pain and that is something I do not wish on anyone.

mikstudie wrote on Oct 29^th, 2010 at 9:45am:


What do you call that cocktail?

I suppose it could be called "the Fuster Clucker", but I should mention that it's already been suggested on cb.com that I start a band called Bejeeber and the Gnashville Fuster Cluckers".

Melissa,

There will be always people who just don't get ch. During my early ch years that bothered me a lot more than it does today. I'm so sorry that there are members of your family who react like that...

I haven't forgotten (like Jerry mentioned ealier... ) that my mother did suggest donuts as a "cure" for ch... And that my closest aunt suggested that I have "imagined" ch. It hurts to hear something like that from the people who know you well. But it happends.

I've used to, also, that my friends do not ask me about ch; that would - to express it coldly - force them to care and "help". So I've solved that by telling them anyway, drinking energy drinks near them when I get shadows or hit. I've supported them with allergies, depression, anxiety attacks, break ups, eating disorders, cancer and insomnia, so I believe that its my right to tell them what goes on in my life, too.

Now, I have not told my future mother-in-law or anyone else in Esa's family about ch yet. I have dealed with shadows during our previous visit to Esa's childhood home, but I did that in privacy. I do know that I will have to tell all of them about ch, but so far it has been so much easier like this. I do believe that Esa's mother will take it in a good way, but its much harder to say how the others will react. But, for now, I don't worry about that, because Esa has seen me getting hit with a kip 10 and he's still here.

So, Mel, here's my suggestion: focus on the good things, live your life and leave the rest. People will have their opinion about you, about ch and about everything else. Tell them what it is like, do what you need to do when ch comes and let other comments/opinions be. It won't be easy, but in the end you will feel better when you will live your life like you want to live it.   

Lots of hugs and lots of PF days,
Sanna