Digest Number 360
Good morning all, Don't we all wish we were just fixable !!! My migraine /HA's started daily when I was going thru a severe 14 yr.old rebellion with my daughter...I was always terrified that when she walked off ,she wouldn't come back...She would be found dead...When she was 17 she disappeared --- Jan. 15 ,1991 the day the Golf war started...That is the day these H/A's became daily.. I didn't hear from her for weeks - my heart was completely broken - all I could do for 4 yrs. of her life is cry and condemn myself for her behavior. She finally called me and we made arrangements for her to come home ..BUT my daily H/A's have never ceased. She is now 25 ..... She has chosen to disappear again BUT at least she does contact me quite often to let me know she is OK My husband and Mom our my only support. Everyone else thinks because I can somewhat motivate they must have just went away. You know NO ONE HAS HEADACHES FOR YEARS !!!A few hours maybe...maybe a few days. So what is wrong with me ??Some just think they are all in my mind - well they sure to affect my mind- my thinking capabilities. I am sorry - I know I sound angry and sometimes I am because the people that should be closest to me are not available. I should send some of this list to some of my friends that just can't understand or can't believe. It feels so good to know I am NOT the ONLY one ... Thanks all for being here and willing to share. We don't have to be afraid here that others just won't believe us or understand what it is like to live with these. Heart to heart, head to head, Karen
~*~*Ya know Karen I have thought many times that I should ask about printing out some of our posts along with those on the other Migraine boards, to show to a *few* well meaning people, & even my Doctor. The couple of people that do support me & try to understand seem surprised when I tell them of my & others experiences with a life of Migraines. My Dr even looks dobtful when I tell him of all the hassles we have with HMOs & the costs & RX limits. If I tell a friend of a really bad episode I get the shocked look like that couldn't possibly be & then they will say something about how I need to find the cause, get medication, go to the Dr...yea right, what do they think I've been doing all these years?! I sometimes feel the need to show them *proof* that many others suffer with this Brain Disorder & that while we may have different symptoms, we are all struggling & basically all in the same (sinking) boat. Some how seeing it in print may make it more real but I would ask permission before doing so. Take care ~Lyn~
The more I read here I think that our experience is very similar to that experienced by disabled people and bereaved peole; that we are so surprised by other people's reactions. I discovered this when running a bereaved parents group, and have also heard it on various disability lists I'm on, and found it true in my own life. There's no way to predict who will understand or try to understand what we're going through, and sometimes it is only when you're faced with something like this that you realise who your real friends are. Some people are terribly afraid of what they've never experienced, and want to pretend it can't possibly happen. So they ignore you, or try to play down or deny what you're experiencing. I guess it's a reaction to things they don't want to happen to them. But that's no help when we're going through it, is it? So I'll have to give you all the same advice I remember giving to the other bereaved parents in our group; spend your time with people who understand you as much as you can. I don't mean being unkind to the others, but they aren't the ones you need right now; you need support. Seek out people who try to understand and just let the others go if you can. They may change their attitude in time, or they may not. There are certain people who consistently avoided me and said useless things to me after my son died, and I haven't been able to be as close to them as I had been. But it wasn't my problem, and if you have to let people go it isn't your problem either. It's harder when it's family, but your support circle can be built of friends instead. Does all this help? I hope so; I just keep seeing the same thing happening over and over again, so I wanted to share my thoughts. Eve -- Okay, so what's the speed of dark?
Eve~ that was very wise advice. How true what you said. And while we cannot compare our feelings to that of a parent who has lost a child many of the same understanding & accepting of our illness applies. Thanks ~Lyn~ give you all