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Topic: Anyone else not able to work? (Read 2561 times) |
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Versilleus
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Anyone else not able to work?
« on: Aug 13th, 2007, 11:53pm » |
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I have non-responsive chronic clusters. One of the major impacts on my life caused by them is that I am genuinely unable to work despite repeated attempts and have been placed on a form of long term disability. This had to have been verified by my Neuros, GP, work placement counselors and so forth.
My main issue is being able to convince one of my immediate family members that cluster headaches cause enough pain to be unable to work and the issue is not laziness (not something I have ever been accused out till now).
Granted some individuals will never change their mind despite the evidence. If he wasn't related I would not continue to try to further aid his understanding. Any constructive ideas would be greatly appreciated.
Here is the McGill Pain Index. Maybe I could stimulate his brain cells with something visual. Where on this scale would a cluster headache place?
Paul
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AussieBrian
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Re: Anyone else not able to work?
« Reply #1 on: Aug 14th, 2007, 12:06am » |
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Never been in labour myself but I'd put CH at about 70 on your scale. (More on a bad day.)
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Linda_Howell
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Re: Anyone else not able to work?
« Reply #2 on: Aug 14th, 2007, 12:41am » |
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Quote:| Never been in labour myself |
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Well, I have. 7 times to be exact, and I would rate childbirth as opposed to a KIP 10...at around a 6
Not sure where to place it on the diagram you have there though, since I've never lost a digit.
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Versilleus
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Re: Anyone else not able to work?
« Reply #3 on: Aug 14th, 2007, 12:54am » |
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Wow, 7 times. Congradualtions.
Loosing a digit wouldn't really count because it is acute in nature. Though an acute experience might help him to understand. A high acute pain experience times 10 a day. The only thing time he mentions pain is when his Gout is acting up. The two don't even compare.
Paul
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Re: Anyone else not able to work?
« Reply #4 on: Aug 14th, 2007, 12:56am » |
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Yes, there are others that are on disability due to chronic clusterheadaches, myself included. And no, I'm not lazy either. I'd work 80 hours a week if I could. I'd give up or do anything to stop the clusters.
About the scale: When describing the pain of a cluster attack, we use "the Kip scale". (Link provided at the left)
Goodluck in convincing the family member of the true meaning of clusters and the physical + mental pain it causes. Maybe it'll help with visualizations such as the videos "The Drip 2", and the 3 clips from the movie "PI" (parts 1, 2, and 3), or perhaps a video clip of a real cluster attack (thanks to Chuck, Jason, and Bob) http://www.clusterbusters.com/chuckattack2.wmv
Google search "Drip 2" *Sorry, I can't provide a link to it due to being in dial-up he77. I'm sure Jonny can provide that link)
You will find "PI" clips on You Tube (link below):
http://www.youtube.com/watch?v=UlcjHDDG8dE&eurl=http%3A%2F%2Fwww11%2 Easphost4free%2Ecom%2FClusterhead%2Fclusters%2Ehtm
also, may want to show them the letter to friends & collegues here --> http://www.ouch-us.org/chgeneral/Cluster%20Headache%20Syndrome.pdf
Goodluck
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| « Last Edit: Aug 14th, 2007, 1:39am by unsolved1 » |
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sandie99
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Re: Anyone else not able to work?
« Reply #5 on: Aug 14th, 2007, 5:08am » |
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Paul,
I'm so sorry that you're hurting. 
Understanding someone else's pain is a challenge which our closeones have to deal with. Whether they will "get it" depends a lot from person to person. I've noticed that my boyfriend and some of my friends understand the pain and its impact on my life easily, whereas my mother... just doesn't. We're all different.
Perhaps your family will understand what you're going through when you tell them as much as you can about ch and the pain and what it does to you? And do your best to "catch up" during a rare PF moment... That's my two cents. Being chronic is hell...
PF days,
Sanna
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| « Last Edit: Aug 14th, 2007, 5:09am by sandie99 » |
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phil_h
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Re: Anyone else not able to work?
« Reply #6 on: Aug 14th, 2007, 2:21pm » |
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Paul, I have the same dx. Last year I worked a total of 50% of the year . If I wasn't selfemployed I would have been fired or out on disability . As I am selfemployed ,I'm just going broke.. Anyway I'm off your pain chart 60%of the time....My family can't believe I still work....I'm trying 8am-1pm and 4pm-10pm...it works better,I cancell fewer appts......the beast forgets that most of my regular 4-6 hits occur in the 1am-6am and 1pm-5pm time slots... You and I know the pain...non-clusterheads can never fully comprehend. I refuse to justify my need to survive my experience and try to keep living . I must either reinvent myself professionally or go on disability ...if I can.......... Be brave ,be strong and pray for better days. In the meantime live as much life as the precious present allows....I pray for pfdans for all of us ..... PS..... Someone told me that I seemed to get alot of mileage out of my self reported pain......I refuse to be shamed and /or judged by others......Fortunately I have one judge , ands it's not that guy !!!!!!!!! phil h
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brauer100
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Re: Anyone else not able to work?
« Reply #7 on: Aug 14th, 2007, 3:29pm » |
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Hi, there. Yes, I've had to quit working for chronic clusters. Also, I went through labor without an epidural and I think that a bad cluster is about the same level of pain as the very worst part of delivery for me, only it's psychologically much worse because there is not a baby popping out of your head so there's no element of it being worth anything, no "light at the end of the tunnel", so unlike the "beautiful pain" of having a baby, it just sucks. I've never lost a limb, so I don't know if you can put it up there, but a bad cluster ranks a 10 on my own personal pain scale, with unmedicated labor of a transverse, 9 pound baby I was in labor for 46 hours to deliver ranking just below it. Of course, your relative probably never went through that either. He sounds like an ass to me.
Frankly, I just think he shouldn't stand in judgment of you. Nothing you can say is going to change that, so you probably should focus on yourself.
I had to quit working because of the headaches and then I was a stay-at-home mom. Today, for the first time, we had to put our kids in daycare for a half day because of the headaches, so I know where you're coming from. We're in a financial mess and I feel like a failure sometimes. My husband is supportive and so are my parents, but some of my family looks at me like I'm a lazy moocher. But they've not walked a mile in my shoes. We all have different burdens to carry in life. Someday they may have their own burden to carry and may need my help and support. Right now I just try to rely on the friends and family who give me the love and support I need and I try to avoid the ones who are unable to understand.
I hope that helps. Take care! Your pain is real, and it's understandable not to be able to work when you are in that much pain.
Kate
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Sandy_C
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Re: Anyone else not able to work?
« Reply #8 on: Aug 15th, 2007, 2:11pm » |
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First of all, being episodic myself, all of you chronic CH'ers have my utmost respect. I don't know how you do it, being hit time after time every day of the year. I admire your strength, and salute your ability to maintain a positive outlook.
As to the pain scale, I'm with Brian. I too, gave birth, twice, using absolutely nothing, no epidural, no pain pill, no drug to relax me, nothing, even when the doctor did the episIomotomy (sp?). If labor and childbirth registers in the 30 to 40 range on that scale, a kip 10 registers at least a 70, if not higher. A kip 5 or 6, to me, might approach childbirth.
Again, as an episodic, my first two cycles only hit me in the evenings, after work. Then, they begain to escalate into the day time. My hits lasted anywhere from 15 minutes to 45 minutes, and I could have anywhere from one to three hits during working hours. There are only two people in my office, my boss and me. I explained to him about my headaches, and I always went to my office, closed the doors, asked him to grab the phones and I would be back as soon as possible. Well, the phones rang, without him picking up, he would open my door and ask me a question, He didn't seem to "get it", and commented something like "well, it's only a headache".
What it took, was not hiding away, but staying right there, in his face, and allow him to see a full blown hit. He watched my right eye droop and tear, water pouring down my right cheek, while the left eye was fine. He saw snot pouring out of my right nostril while the left was clear. He watched me go from sitting in a chair, rocking back and forth into pacing around his desk, grabbing and pulling my hair. And, he watched everything ramp back down, watched me return to "normal", and it was business as usual. He was astounded, and from that point forward, he bent over backward to to make sure I had all the time I needed to handle a hit.
In my opinion, when someone chooses to remain clueless about CH, and nothing you can say will disabuse them of their thoughts that you are a slacker, let them see it.
Next time your relative complains about how much pain he is in with his gout, STOMP ON HIS TOE, and say, with the sweetest smile, Oh, Gee, did that hurt? 
Sandy
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Superirish2005
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Re: Anyone else not able to work?
« Reply #9 on: Aug 15th, 2007, 5:48pm » |
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most people work using FMLA
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cindymoore
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Re: Anyone else not able to work?
« Reply #10 on: Aug 16th, 2007, 11:01am » |
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My husband has CH and we have no choice but for him to work. He gets the Ch's for about a month and 1/2 in the summer and again in the winter so about three months out of the year. He is lucky that he doesn't have them year round cause i have no idea how we could survive. Is is very hard to let him go to work when he is having them (he works outside year round) because he deals with trying to hide it from the other guys on his crew but at the same time he doesn't like to escape to the truck because he doesn't want his crew to think that he is lazy (he is the foreman). As for your problem, please don't waste your breath.....this person should care enough about you to try to understand what you have to live with. If this person cannot at least try then just let it go.....they don't have to walk in your shoes....you must live your life the best you can and to hell with everyone that has a problem with it.
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George_J
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Re: Anyone else not able to work?
« Reply #11 on: Aug 16th, 2007, 11:35am » |
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I'm episodic (6 to 8 weeks per cycle), and I have always worked. But it's only because of my particular circumstance.
I almost always get hit at night, and then only once or twice a day during high cycle. I lost a lot of sleep--but I could usually drag myself in the next day. On average, I would miss 2-3 days work during a cycle. Very few people have even seen me take a hit, although a lot of my co-workers commented over the years that I looked like I'd been dragged backwards through a knothole.
If I was chronic, and if I got hit more frequently, it would, without doubt, have turned out differently.
My respects to all who get through these in any way they can.
Best wishes,
George
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Superirish2005
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Re: Anyone else not able to work?
« Reply #12 on: Aug 16th, 2007, 1:17pm » |
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most people actually hold jobs with clusters
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Wayne
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Re: Anyone else not able to work?
« Reply #13 on: Aug 16th, 2007, 2:05pm » |
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on Aug 16th, 2007, 1:17pm, Superirish2005 wrote:| most people actually hold jobs with clusters |
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Gollum, Your opinion on absolutely everything is definitely not wanted! Go away!
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Re: Anyone else not able to work?
« Reply #14 on: Aug 16th, 2007, 2:18pm » |
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on Aug 16th, 2007, 11:01am, cindymoore wrote:| My husband has CH and we have no choice but for him to work. |
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Disability is NOT a choice. Do you think that most people on disability chose to be on it ? I don't think so. They just have to learn to play the hand that god gave them.
Rolling around on the floor, screaming, crying, panicing, etc ... multiple times everyday is NOT A CHOICE either !! Don't you think that one would rather be working than suffering in pain and poverty ??
omg ... choice. It really ticks me off to hear people refer to disability as something that we choose over working for a living. If you were in enough pain, you would have NO CHOICE but to accept disability for the cash and for the medical insurance & treatments !!
CHOICE ! HUH !! 
UNsolved
EDITED TO ADD:
on Aug 16th, 2007, 1:17pm, Superirish2005 wrote:| most people actually hold jobs with clusters |
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I'll agree with that since most people with clusters are episodic
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| « Last Edit: Aug 16th, 2007, 2:22pm by unsolved1 » |
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Superirish2005
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Re: Anyone else not able to work?
« Reply #15 on: Aug 16th, 2007, 3:02pm » |
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i do not beliebe in diasability or unemployment, only choice is to work.
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vietvet2tours
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Re: Anyone else not able to work?
« Reply #16 on: Aug 16th, 2007, 3:08pm » |
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on Aug 16th, 2007, 3:02pm, Superirish2005 wrote:| i do not beliebe in diasability or unemployment, only choice is to work. |
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Help wanted Mommas boy piece of shit.Only Superduperirish need apply.
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Brew
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Re: Anyone else not able to work?
« Reply #17 on: Aug 16th, 2007, 4:12pm » |
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on Aug 16th, 2007, 3:08pm, vietvet2tours wrote:Help wanted Mommas boy piece of shit.Only Superduperirish need apply.
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I can see it now: "I was looking for something in, oh, I don't know, maybe senior management of a major American corporation."
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Superirish2005
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Re: Anyone else not able to work?
« Reply #18 on: Aug 16th, 2007, 4:20pm » |
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brewcrew final warning stay out of my pots!!!!!!!
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Brew
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Re: Anyone else not able to work?
« Reply #19 on: Aug 16th, 2007, 4:59pm » |
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Always remember that you're unique, just like everyone else.
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Linda_Howell
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Re: Anyone else not able to work?
« Reply #20 on: Aug 16th, 2007, 5:05pm » |
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Quote:| brewcrew final warning stay out of my pots!!!!!!! |
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Why? You got some home-made chili in there?
ROTMFFLMMFAO !!!!!!!!
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Brew
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Re: Anyone else not able to work?
« Reply #21 on: Aug 16th, 2007, 5:11pm » |
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Very nice, my friend.
Edited to add: I wonder what's going to happen now that I've been issued a final warning? Is that like double secret probation?
(And no, I wasn't talking to you, dog excrement. I was talking to my friend, Linda.)
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| « Last Edit: Aug 16th, 2007, 5:17pm by Brew » |
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Superirish2005
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Re: Anyone else not able to work?
« Reply #22 on: Aug 16th, 2007, 5:29pm » |
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PollyPocket
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Re: Anyone else not able to work?
« Reply #23 on: Aug 16th, 2007, 5:36pm » |
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oh no Brew! You got the 7 angry faces post!!!!! OH NO!!!!! whatever shall you do???????????????
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Peppermint
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Re: Anyone else not able to work?
« Reply #24 on: Aug 16th, 2007, 5:39pm » |
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on Aug 16th, 2007, 5:05pm, Linda_Howell wrote:
Why? You got some home-made chili in there?
ROTMFFLMMFAO !!!!!!!! |
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You kill me Linda...
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