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Title: Tell me!.... Post by Jonny on Sep 9th, 2004, 7:41pm Where would you be now if you never had CH? We all got CH at different ages, 12 (me), 20, 25, 30, all they way up to over 50. Would you (Being able to do w/o pain) something that you did not do? This is for both episodics and chronics.......this shit fucks our lives up no matter how often the pain....damn it!!! I would like to hear if any of you had life plans and CH ruin them. .............................jonny |
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Title: Re: Tell me!.... Post by Lizzie2 on Sep 9th, 2004, 7:48pm Well I guess a couple health things did, but... I wanted to go to med school....from when I was about 8 years old or so!!! I would've also liked to continue with piano had the pain not been so bad. Ah well. My former neuro told me one thing back in April or so? : No Regrets!!! Lizzie :) |
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Title: Re: Tell me!.... Post by Redd715 on Sep 9th, 2004, 7:54pm I'm not sure how to appraoch this question, but I guess I'll just speak from the time this mutated on me. To put it quite bluntly, I highly doubt that I'll ever find a person understanding enough to ever have a normal relationship with again. I had always hoped that I'd remarry someday. I don't think that is a realistic wish anymore. |
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Title: Re: Tell me!.... Post by Donna_D. on Sep 9th, 2004, 8:06pm Takes more than the beast to make this Texas Gal give up! Onward through the pain! DD |
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Title: Re: Tell me!.... Post by Melissa on Sep 9th, 2004, 8:22pm I don't know where I'd be, and I don't want to know. I love my life the way it is and everything that has happened up to this point, good AND bad. It is made me who I am. I've always believed, that everything that happens in our lives, happens for a reason, and it is we who choose which paths to follow and which doors to open. If I had a chance to go back and change things, I definately wouldn't. :)mel |
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Title: Re: Tell me!.... Post by IndianaJohn on Sep 9th, 2004, 8:26pm This is a tough one. I've used at least 70% of my vacation, sick and personal time from work to deal with this. So I would probably guess that I would have like to use that time for other things, like a real vacation. Not to mention all the money I have spent on doctors and meds.... Red don't give up on finding someone..I can and does happen. |
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Title: Re: Tell me!.... Post by stevegeebe on Sep 9th, 2004, 8:29pm I don't think anything would be different jonny. Can't say the same if I were chronic. Being episodic has allowed me to simply plow through the bad times and continue on with my plan. Perhaps I don't recoginze the smallest things that affected my daily outlook as a result of this defect. Being a small part of this family however, has taught me things that I know makes me a better human being and most of all, to relish the pain free times. That, my friend, is enough for me. Time is short. Live it well as best you can. Good question. Steve G |
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Title: Re: Tell me!.... Post by kimh on Sep 9th, 2004, 8:31pm I'm with Mel. Hindsight..........i don't want to go there cuz it's wasted energy IMHO. After all this time, the ONE thing i think clusters had a negative impact on is my younger days at school. High School was a tough time for me with clusters, because no one understood at all what was happening at that time. We all have rough things to deal with in life. I don't know one honest person who has a "pain-free" life. If it ain't one ting its anudda ;) .........actually.............i'm real kool with the lunatic i turned out to be :D |
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Title: Re: Tell me!.... Post by Linda_Howell on Sep 9th, 2004, 8:48pm Hmmm. Started this shit in 87 Got divorced.. and realized I could not get a REAL job because of CH. So, if this had a impact on my life I would say it was job related. Had to go clean other peoples toilets and shower stalls instead of getting a real 9 to 5 job. If this had affected any relationships I had...I would consider it as blessing I had been warned that this person was not what I was looking for. Linda |
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Title: Re: Tell me!.... Post by Rock_Lobster on Sep 9th, 2004, 9:07pm Not really. The life was pretty well rolling when they started (about 15 years ago). When in-episode I tend to just stay home... make very few plans outside the house. No vacations, not even any day trips. If I go out, it is for a few hours max. Also I refuse to travel on business during most of an episode, but that has not really hurt anything. |
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Title: Re: Tell me!.... Post by vig on Sep 9th, 2004, 9:16pm all I know is I wouldn't be where I am and there's no going back. |
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Title: Re: Tell me!.... Post by E-Double on Sep 9th, 2004, 9:29pm I don't know if anything would be different to be honest. However, I do sometimes dwell on whether this will end and then I tend to get scared about pursuing future endeavors. I really want to go back to school for my PhD but I also know that there is absolutely no leeway when it comes to doctoral programs. Kinda a tough shit attitude. Do your work and can't let personal problems interfere. I also look at many people here and find inspiration to do whatever it is I need to do and feel that I can probobly find a way to accomplish it. So despite my fears I'll find a way to make this all work. Good thread Jonny :) & Redd, it's out there when we least expect it ;) Hugs to all. E |
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Title: Re: Tell me!.... Post by farmboy on Sep 9th, 2004, 9:34pm Well for me i think the only thing it really affests for me is that i miss a lot of car shows because i can't take the heat in the summer anymore. My cycle is end of june and begining of july into august. That is when the chrysler car show is and i can never stay long because of the heat, set off an attack. |
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Title: Re: Tell me!.... Post by ckelly181 on Sep 9th, 2004, 9:39pm Yea, I'd have to agree with stevegeebe. My life wouldn't be much different. I think the only thing that would be different is that panic I feel when I get near a cycle. Every little twitch in my head makes me fearful and tearful. It's almost a relief when I get them; at least I know what to do and can buckle down and survive. Good question. Chris |
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Title: Re: Tell me!.... Post by Karla on Sep 9th, 2004, 9:42pm I had to give up my career working as a computer programmer/systems analyst for the last 5 years. I hate to be thinking about how much income Ive lost or where I could be at today If I hadn't quit working to go on SSDI. I am however in school now since I have been ch free for last 5 months and taking computer courses so I can get a job again. My husband and I would have been eligable to Pastor a church many years sooner. My kids would not have had to pick up the slack with me being unavailable for housework and helping them deal with their lives. |
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Title: Re: Tell me!.... Post by thomas on Sep 9th, 2004, 10:11pm I'd have a lot mo' money. |
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Title: Re: Tell me!.... Post by Gator on Sep 9th, 2004, 10:15pm Well, let's see. I was working for Creative Labs as a Tech Support Agent, but probably would have ended up being fired (if I didn't quit first) because they wanted robots to read scripts and not technicians who could spend time with the callers actually fixing their problems. I was getting fed up them them not allowing me to actually help people and they were getting tired of my long call times. So ch or not, I probably would not be working there now. CH has kept me from going back to work because of the number of hits I get in a day. No one around here wants the liability. Having said that, I am very happy at home being Mr. Mom. The house is cleaner than it has ever been, meals are served at a decent hour - not when one of us finally gets home from work. And they are good balanced meals, not thrown together crap or sandwiches because we were both too tired to cook. We have less money, but actually seem happier as a couple than when we were both working. All in all, I'd say that besides the pain, the lack of sufficient meds and the extremely tight budget, I am actually doing better in a way, than before the ch hit. Gator Hmmm, go figure! Editted to add: I'm 11 months in to my first cycle, but hey, at least I'm not chronic, right? :-/ |
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Title: Re: Tell me!.... Post by JDH on Sep 9th, 2004, 10:28pm Don't think my life would be much different other than I'm no longer scared to death at this time of year. My cycles start in the fall and I went through a whole lot of them not knowing anyone else was out there....scary stuff for sure. Jim |
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Title: Re: Tell me!.... Post by Sean_C on Sep 9th, 2004, 10:45pm Started at 13 Chronic Went from High Honors to below average to failing. Left school at 16 to go to work full time. Tried to returned to school a year later, left again due to a kip 10 break down.........never graduated Went to work for 12 years, later became self employed, own a home, got married to the best supporter ever, had 2 kids, got a dog, a fishing pole and a truck and never looked back. Beast has been with me for almost 25 years (our Silver Anniversary ;;D thank you your so kind) and to answer your question I honestly can say the road I was on prior to medication was pretty rough, the medication road has been alot smoother thanks to trex. Nice thread Jonny, made me think for awhile ;;D Sean........... edit: I left school because I assumed my pain in my head was caused by something in the air at the school. Go figure? |
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Title: Re: Tell me!.... Post by Charlie on Sep 9th, 2004, 10:47pm Hard to say but I suppose I'd be stuck feeling sorry for myself only at an epilepsy MB. Sad sites they can be. You people have helped me get stay a bit away from total self-involvement. Charlie |
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Title: Re: Tell me!.... Post by Tim_Z on Sep 9th, 2004, 11:11pm I'm with Mel on this one. They are hell to live with and I've done some strange things. I'm lucky at work, I just disappear for a half an hour or whatever it takes. If it gets too bad and I can't abort it I go home and come back and try again the next day. I'm fortunate that way. Just wish I could catch up on my sleep during cycle. It has screwed up some dates and appointments. My wife and kids put up with a lot. They're the greatest. I generally don't have any regrets and play the hand I'm dealt. I deal with things the best I can and move on. Tim |
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Title: Re: Tell me!.... Post by athos on Sep 9th, 2004, 11:56pm CH had screwed my career in more ways than I can count.... I have had very few bosses that have ever understood what the deal was.... No I am unemployed unless you count the Xshirts... but still looking..... got a lot under my belt, but health issues always kill something..... Hollywood film makup artist Graphic Designer for Playstation Games Senior Producer for the Worlds #4 Advertising angency all affected by CH. and others since then |
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Title: Re: Tell me!.... Post by unsolved1 on Sep 10th, 2004, 12:05am I'd have my Bachelors Of Science in Computer Science degree from IU by now. I had to stop taking classes after nearly 3 years because the CHit got too bad ! Where would I be now ?? Unsolved |
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Title: Re: Tell me!.... Post by nancyc on Sep 10th, 2004, 12:42am Damn, bro..i had already written my post then read yours...I was thinking the same things when i wrote mine...thinking about how I would be a nurse practioner now instead of an RN if I had not had chronic chs. Thinking how I have not done what I wanted to do in nursing because of chs...Then when I read your post, I could not believe you had posted this !....must be the nite to think back on our past or something...Good topic.... :Dnancyc |
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Title: Re: Tell me!.... Post by Callico_Kid on Sep 10th, 2004, 12:49am I think I have to agree with Kim that if it were not CH it would be something else. Yes, CH has changed a lot of things in my life. I am not able to operate a business the way I wanted to and tried a few years ago (b4 chronic), and like Karla, it has kept me out of a a lot of ministry opportunities, but it also has opened up others. All told, I think I have to say I have been blessed with CH. I look at my wife with MS, and my mom with Parkinsons, and Christopher with cancer, and I think I am quite lucky. Besides, had I not found this place while looking for some answers I would have missed out on you people. good thinker, Jonny. jc |
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Title: Re: Tell me!.... Post by BobG on Sep 10th, 2004, 6:14am I think I would probably be right where I am now. I've been very lucky that my attacks were mostly at night and didn't interfere with my job. My managers have always been informed that an attack could happen at work and the couple of time it did happen they accepted it. I've always had good insurance so the money hasn't been a problem. I've never been chronic. My longest cycle was only about 8 weeks so it has not been a lifelong day in-day out problem I haven't had a real cycle for about 5 years now so maybe I'm out-growing them and don't have to live in fear of the next cycle. |
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Title: Re: Tell me!.... Post by lionsound on Sep 10th, 2004, 9:04am I’ve had these ever since I can remember. While existing in undiagnosed blind stupidity and pain I managed to plow myself through a decent college, teach for a while, then start my family. I think I would be in pretty much the same place in life. Without CH, I would be smiling more and enjoying more of it. I miss my family and I hate it when I lose days. And I guess I have always figured I’d have more children. It’s sadly looking like that won’t happen. I’m so incredibly blessed with two and I wouldn’t have more just to satisfy myself. That is wrong. I won’t be pregnant while on these meds. I won’t. And I won’t have children I can’t take care of the way that they deserve. this is a good, thought provoking, thread -lionsound |
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Title: Re: Tell me!.... Post by Jimmy_B on Sep 10th, 2004, 11:16am I would definitely be working less hours...began working in a retail Pharmacy chain & was ultimately promoted to Drug Enforcement Rep. for the Philly Region. It was a crash through the glass ceiling since they never hired anyone for this position that didn't have at least a Pharmacy Degree. (Makes sense...hire a Pharmacist to investigate drug loss in Pharmacies, instead of someone with Law Enforcement experience) [smiley=huh.gif] Was laid off ( due to Cluster Cycle) taking off too much time, & disappearing to deal with a sudden onset Cluster. The final straw came when I was on a business trip & got a cluster right in the middle of one of the important meetings. Now I'm working two jobs (Corporate Security for a large Pharmaceutical Research Co. & Security (bouncer) for a bar in Princeton) Also, work a third job freelancing with covert Security Equipment. So that's three jobs for what I was making at one. :P Jimmy |
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Title: Re: Tell me!.... Post by rubberplant on Sep 10th, 2004, 11:38am I would have been exactly where I am now. I never let my epilepsy get in the way. I met my wife (then partner) and was off sick for three months with that almost immediately. She stuck by me through that. I would stilll have ended up being a freelance cameraman/photographer. I have clusters on my left and use my right eye only! You've gotta remember that even if we're labelled (or self-labelled) clusterheads or epileptics (or smokers!!) underneath we're still people. We just have something a little extra. Something I'd willingly lose my legs to get rid of but... James |
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Title: Re: Tell me!.... Post by stuey on Sep 10th, 2004, 11:50am I wish I could blame the Clusterheadaches for the stupid shit I've done. But my fucking up a tennis career through smoking, not having gone to culinary school or other choices I've made in relationships with people who used me to live off the salt of my sweat but didn't give a shit about me, none of that had to do with CHs. I guess I got what I thought I deserved. Why I got CHs who knows but I've wanted to give up often even before being hit with CHs. Just dumb ass decision making and not respecting myself. I hate CHs but still contemplate ending it all at times even when in remission just out of unhappiness. Everyone says I have so much to offer, blah, blah, blah, so good looking, blah, blah, but if you don't believe it it doesn't really matter what others say. I guess what's stopped me from ending my life is fear, not knowing what is coming after no matter what that guy on tv who talks to dead people says, and not wanting to hurt the people who do truly care about me. Plus I keep hoping things will somehow get better. So that's my thing. In sum, CH make me unhappy, but I was unhappy before they got here and still and not the most joyful person around. Stuey |
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Title: Re: Tell me!.... Post by echo on Sep 10th, 2004, 11:58am I'd probably still be a policemen. I'd probably have a better relationship with my wife, children, brothers. I might actually have a close friend I could depend on. I might actually give a shit! I'd play more hockey, I'd coach a team. I might actually enjoy life. What the hell, I'm chronic, I'm alive, I'm miserable -- just fucking shoot me!! If this is what life is all about -- someone needs to cancel my ticket. I sure as hell won't do it myself. |
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Title: Re: Tell me!.... Post by Opus on Sep 10th, 2004, 12:25pm I could have been a contender, Ch was for me just the last straw, like being kicked when you are down. On the other hand, I would have never met the good friends that I have here. I would have been on some boring sleep apnea board. All they care about is getting a good nights sleep. Clusterville is truly the city that never sleeps. Opus/Paul |
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