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I know just what your feeling. I have had so many people in my family do so many things to try to and succeed in helping me out in different ways. Still I have times I have that same lonely feeling. Comes and goes once or twice a year for me but it does go. It sucks almost as much as the clusters themselves but just keep positive and make sure you tell your family you appreciate the help and love them, explain your feelings and im sure they will try to understand. Stock up on as much of that oxygen you can and try not to let it run out and you will pull through this. I am sure you know from poking around on this site that we have all had issues like this at one point of another and we are all here to support each other. For me reading, asking questions and not being afraid to try new things has kept me from going nuts.

Hey there CE, The pain can certainly be isolating which can lend a helping hand to allow loneliness to creep in. Having supportive family like you do is so important (as you realize). Lot's of us on here to talk with so no need to allow yourself to feel so lonely prior to popping on here. Sometime just reading on here and talking to others that understand what your going through can really help keep the spirts lifted. I see by this comment that you have a wonderful sense of humor Trust me laughing at this sh*t show can be a saving grace of sorts. I hope you get your o2 and find your way out of this cycle sooner than later.

That is a haul. I usually go crazy by week 10 if they do not stop due to the loss of sleep. Funny you say get off easy because that is exactly how I describe the first half of the cycle but then it goes big. Bust when you can because it is amazing help, I am getting close to three years PF!

This is something I've been kicking around for years while in cycle trying to tame the beast. Whenever a cycle would start these words would pop into my mind "time to dance with death" as each experience truly felt like a tango with my mortality. Can I get through this? Can I take the pain? Can I make people understand this craziness that is my life? Do I even want to go on? Wrapped in the deep embrace of unimaginable pain, I'd waltz through the agony. With every searing neuronal shock, I'd spin. My screams where the music as the tears flowed. I'd dance with death to the drumming of my racing heart and the explosive pain in my brain. Stuck in this box step 123-123-123 repeating to myself "release me....release me". Just as the ordeal felt like it would swoop me away leaving a lifeless body, setting me free from this curse forevermore with the extinguishing of my heart...the dance was done. Left as a shell of who I was, battered beyond repair, a scared quivering woman who's life was run by fear and the anticipation of the next attack. Death had released me from our waltz but not for long as we all well know, it will be back to consume us again. It's that time of year folks, my cycle has started and with it, has brought my life to a screeching hault. The thought of losing everything and the constant rebuilding is daunting to say the least. It's been a week since the beast has arrived, leaving me homebound and struggling to explain my condition to my new employer and loved ones. I feel a creative outlet would help so I've thought of writing about my experiences (the good, the bad and the downright ugly) to help release some of the emotional burden this condition causes. I wish you all a beautiful pain-free day.

I was two miles away. (Just someone who lived in NYC. Not 1st responder or anything.) The non-stop smell, the feeling of the smell coating your tongue, the thickness of the air… there isn’t a vocabulary for this… just no words… bleak adjectives like nightmarish and horrific miss the mark the way describing an elephant as grey does— there is no scope, no dimension, to capture what it was actually like. To think that the smell/taste/sadness/despair of that day/week that is still so visceral, could be connected to the life-ruining, non-stop, soul-crushing, relentless pain that I feel like I can’t endure another second, this pain that makes me want to rip my own eyeball out the way Van Gogh dispensed with his cursed ear, to think this pain could be directly connected to that 9/11 pain… I just don’t know what to say… I’m crying right now, but I am not sure if it is the thought of the connection between these two, or the fact that I ran out of o2 last night and I’ve been pounding my head against the shower wall for the last 12 hours.