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Title: As C3PO Would Say... Post by Carl_D on Sep 19th, 2006, 10:40pm "I've got a bad feeling about this." Things have been fucked the last 2 weeks. I am almost 2 months back into cycle, and too much other shit is piled on top of it. I'll be brief (me? brief? is it possible?) I'll save it for my raging blog later. Don't want to unload here. I do that enough. Pain has escalated, insomnia is getting way out of hand again (same time as last year, which I told my brother tonight I wonder if it is a seasonal thing). After much sleep deprivation, I passed out yesterday morning and didn;t get woken up with a cluster. Instead, since I was so drained - I was 6 HOURS LATE FOR WORK!!! My boss was totally cool and understood since he knows my situation far too well. I got to work and my client was fine. He stayed out of trouble, kept himself entertained and... talk about a trip, called his mom when I hadn't shown up, worried about me and wondered if someone could check on me. He has seen me coming out of an attack 3 times since I went back into cycle, but Friday he saw me go into an attack, and then saw me while I was full blown. Later, after it was over, I had to calm him down and explain that, while I was just fucked up - I am okay now. There is something about having someone see me that far gone that just disturbs me. I know I have to look completely psycho during a hit, and whereas I had learned to cope the last couple of year of being chronic and would focus on breathing and trying to remain calm..... since going into cycle again, I have lost it a few times... and... well fuck! Not coping as well. I haven't been hit in two days, but got a couple of hours sleep today and am sick as fuck now. Apparently, the sleep dep, temp drop and everything weakend the immune system. Too much other shit. I have to laugh or I will lose it. The new machine I just got to try and record with... my brother Bry got ahold of it last night, threw a harddrive and soundcard, vid card into it to try and get me set up ( I had no idea he was going to do this) - but got the word today that the whole thing is fucked. It fires up, but will not work. So, My dashed hopes of having a recording machine were rejuvenated briefly only to find out I have a computer case - everything else is shot inside it. At this point, I don't care. I've beat my head against the wall over the whole music situation enough that... I will not stop playing. However, it remains to be seen if I ever record again. Been trying for over two years now, and I just don't have the means. I have the songs, I have the drive to do it and the hunger is stronger than ever... right now I just have to make it through another day, get to work on time, and fight the exhaustion. Even if I sleep a couple of hours nowadays, it doesn't seem to help much. I'll stop now before I start whining. I may go down, but it won;t be without a fight. However, I am getting weak. Not sure if it is because I am getting sick, or the sleep dep is already kicking my ass. All I know is, if this gets as bad or worse than this time last year - I'm beyond fucked. I can't explain how wicked last year was. I just know that during my remission this year, I forgot how bad this can get. Tooth and nail, Carl |
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Title: Re: As C3PO Would Say... Post by Batch on Sep 19th, 2006, 10:48pm Carl, I'm still a newbey here but a 10yr+ epeisodic CH sufferer. What are you taking/using as an abortive? Hang in there. Batch |
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Title: Re: As C3PO Would Say... Post by Batch on Sep 19th, 2006, 10:49pm And may the Force be with you... V/R, Batch |
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Title: Re: As C3PO Would Say... Post by BMoneeTheMoneeMan on Sep 19th, 2006, 10:51pm Bro, Once thing I learned. When a cycle comes on, try to stay on path and focus. Try to get the things done that you want to get done. However, when the beast has taken its toll and you are completely worn out, stop trying. Trying and failing will only make you more stressed. Sometimes ya just gotta put life on hold for a little while, and realize that you can either go through the motions and get a half-ass result, or you can just take a break and take a break. Thats just my 2cents. I know I didnt expain it well, but hopefully you understand. PF wishes BMonee |
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Title: Re: As C3PO Would Say... Post by chewy on Sep 19th, 2006, 10:55pm After all the years of suffering I'm wondering why you are not prepared for this shit and why it all seems to be a surprise time after time. |
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Title: Re: As C3PO Would Say... Post by Carl_D on Sep 19th, 2006, 11:07pm Batch - Right now I am on Verapamil as a prevent, and take Frova for abortives. I ran out of frova, and so it looks like I will be hitting the Trex, even though I fear massive rebounds. My doc appt got postponed, so o2 is on hold until Nov 3rd, and I am not a happy camper about it, but can;t do jackshit. Bman... You just hit the nail on the head. I have been so frustrated fighting this and trying to either get a gig or a means of recording, and basically had a nervous breakdown in the last week. In fact, I even considered saying fuckitalltohell and giving up music altogether but... I can't stop. I can;t explain either. I put music down for such a long time that, right now I almost feel like it is all I have left. Just like no one else can understand what a cluster is like except another clusterhead... no one can understand how imcomplete I feel not being able to do the only thing I am good at. Music is my lifeblood, and I feel like if I do give up and stop trying - I WILL die! The last break I took from music... I lost myself. Again, I can't explain. I just know it compounds with everything else. Peace, Carl |
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Title: Re: As C3PO Would Say... Post by georgej on Sep 19th, 2006, 11:12pm I'm with BMonee this time. Time to circle the wagons, Carl. Circle the wagons, forget all the stuff you don't absolutely have to do right now, defend yourself as best you can, and wait for the attack to end. No other choice. You're going to wear yourself down to a stub if you don't. Hang tough, my friend. Take advantage of the PF time. Get some rest. Recharge. Renew. Quit stressing. Best, George |
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Title: Re: As C3PO Would Say... Post by Opus on Sep 19th, 2006, 11:14pm Carl, Keep on fighting, and don't worry about the trolls, giving us updates help use know what you need prayer for. Sorry to hear about the computer. It might be a bad card. Yank all of them but the video card and see if it will look for an OS. It could also be bad memory. I hope it is something simple. Let me know if you need something. Paul |
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Title: Re: As C3PO Would Say... Post by Carl_D on Sep 19th, 2006, 11:17pm on 09/19/06 at 22:55:25, chewy wrote:
Because, every year it gets worse, and every time I think I have a grip on things, I get thrown a curveball. Also, with the insomnia, it is hard to prepare for something that gets worse with time, and nothing is working to control it. I'm just lucky I'm not getting hit as frequent with the CH, which I attribute to the Verapamil, and have an abortive that works most of the time. Not surprised, and did all I could to prepare for this. Just wasn't expecting the CH, Fibro and everything to hit all at once so soon. Carl |
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Title: Re: As C3PO Would Say... Post by Batch on Sep 19th, 2006, 11:30pm If you've not already tried it. ask your doc about Neurontin (gabapentin). I've been on 900 mg/day TID for almost two weeks now and it's made life worth living during this cycle. I was approaching mid cycle when I started taking it and it shut down the beast right off the bat. I've had some minor CH burn throuh but all were due to not taking the gaba on time. 3 Nov wait for O2 - Ouch! 100% O2 at 10 to 15 l/min works great for me even when the CH spikes to KIP-7 and above. Have you looked for another O2 source? |
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Title: Re: As C3PO Would Say... Post by cootie on Sep 19th, 2006, 11:36pm You mite be feeling 'sick' from the aches and pains flareup......fibro stuff or chronic muscle fatigue my doctor calls it. Even with severe arthritis you will have bouts of fatique and not feeling so good episodes or cycles. I am convinced EVERYTHING comes in fazes and cycles......but what about life Pam |
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