I was just thinking about when my CH started...

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Posted by Dani ( on May 24, 2001 at 08:21:23:

I was emailing another sufferer and got to thinking about how terrified I was when this started. Not knowing what is was or anything...
One day being perfectly healthy, then whamo! I wake up one night in unbelievable pain. I was certain it must be a brain tumour...what else could cause pain like that?! It may sound funny, and by no means do I mean to minimalize CH, but I was almost relieved to find out that even though I could not neccessarily be 'cured' of what ailed me, I could at least live with it. For a few years I have watched a good friend battle with her MS and have admired her courage, optimism and fortitude. After dealing with CH for almost 2 years, I have an even deeper level of respect for all people who live with devastating and excrutiating levels of pain. I kept thinking any day this would disappear as mysteriously and quickly as it had come. And I waited and hoped and waited...sometimes I would think they had left for good (when I took prednisone)and I would be so happy. And then bang, there they were again within 24 hours of finishing my taper. That feeling of utter despair and such harsh disappointment. Trying new drugs and waiting desperately to see if they would work...only to have those very same hopes dashed, one after another. I was at the end of my rope....mentally, physically even spriritually exhausted. I became the recluse we know all too well. Never wanting to make plans because I didn't know from one day to the next how I would feel. My nights spent in tears, trying to hold the panic at bay. And my days spent wondering how I was going to live like this. How would I continue in my work? How would I ever have a normal, healthy relationship with someone when most of the time I felt like I was going out of my mind. When in a cycle, my CH is allconsuming....my life revolves around it....all of my energy focused on it. When I am given a reprieve, like as now, I feel like celebrating just to wake up naturally after even too little sleep. Sitting here today (tonight actually), when I think about what I have been through, what we all have been through, I feel so much pride and respect for us as individuals dealing with CH. No matter how overwhelming it is, we are dealing with it. It takes an extremely brave person to look the devil in the eye and spit in it's face. I guess I like that saying "That which does not kill us makes us stronger."
Sorry my post was so long, but I just wanted to share this with you because you have helped dispell some of the fear and anxiety for me. Just knowing that you are here helps takes some of the lonliness away and what I read here (even the bantering and bickering), inspires and educates me.
It seems so trite to say thank you, but I am not nearly articulate enough to express how I feel, and so, those two words will have to suffice till I think of some better ones...:)

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