It’s so lonely

[CursedEyeball]

I am so lucky. My family is so supportive. Right now my spouse is skipping work to go to the o2 place to try to get them to give me a new tank even though we didn’t follow the 24-hour order rule.

Even with all this love, generosity, support from my family (which oh my gosh, I know I am so @*^#% lucky to have) I realized in the middle of last night—snot pouring out of my nostril mixing with tears; cries waking up the neighbors, sending them to google to find an exorcist—I realized pain like this… unimaginable pain… unspeakable pain… is just so lonely.

All this to say, between pounding my head against the wall, passing out for 20 or 30 minutes, up again in agony, cursing-crying,  etc. I’ve been reading the archives here and feeling pure love, empathy, gratitude for all of you people. I still feel lonely as hell, but at least we’re all lonely as hell together. 

[BoscoPiko]

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.

1 hour ago, CursedEyeball said:

sending them to google to find an exorcist

   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.

[FunTimes]

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. 

[Bejeeber]

10 hours ago, BoscoPiko said:

Trust me laughing at this sh*t show can be a saving grace of sorts

+1 for the cluster gallows humor.

[Rod H]

 It is lonely at the top. That is why we have this place. 

[Bert]

I find that in my case, playing the mental game right becomes the most important thing as episodes grind on. Particularly at night. I don't know how chronic people do this.

I steal a lot from zen teachers and competitors in precision sports for mindset, and play small attention games if I can manage it. Music with polyrhythms is a useful one, but I was a drummer as a kid and trying to tap along is familiar (and more importantly, each song I can make it through kills a few minutes).

Anything to focus on is better than sitting there and taking a beating. Because you're right, that's when you start to ruminate. I try to keep my mind on a very short leash and frame getting through it as just another distasteful and necessary job.

Edited August 13, 2023 by Bert
clarity

[devonrex]

I always find at about 3-4am, alone, dark, quiet rocking and biting my tongue to try and not wake anyone, to be the loneliest hour. Without the dark/black/gallows humor might not have made it this far. I have help from family and while the is freaking amazing, the depth of the pain is really isolating because it is basically unimaginable to anyone who has not experienced it. 

I tend to try and blast music or force myself to play something, if it allows me, to try and split my focus. Adhd is kinda a blessing in those cases if I can manage to grab my hyperfocus with something, it can in essence put me in a fugue state and helps to ride out the hellstorm.