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cluster_mom
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Jobs and ch
« on: Mar 28th, 2006, 8:21pm » |
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I would love all the suggestions that I can get for how to hold a job when you have ch. Every job that I've had I've lost for too much time off. Its hard to even get a job with my attendance history. I've never had an understanding employer. Even when I came with doctors notes and er slips for being there. I've always got the its just a headache, we've all had headaches spheel. I'm from WI anyone know any ch friendly places to work. I was working as a CNA, but also have a history with office work among other things.
Cluster_mom
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sailpappy
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Re: Jobs and ch
« Reply #1 on: Mar 28th, 2006, 11:07pm » |
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 One of the most difficult parts of having Chronic Cluster Headaches is trying to work a normal occupation! Back when I did work, I found myself taking only jobs that allowed some liberty with working the hours that you could work. One of the best jobs ever for me was being a Maintainence Superentindent for rental communities.
This line of work offered the most flexible schedule with the most challanging work load. I was able to stop when I needed to and make up the time I was off with attacks when I could.
It also afforded me the conditions that were best suited to my condition. I kept a beer keg cooler in the shop so that no matter what the weather conditions outside, I could keep control of the enviorment to best fill my needs with regard to the only treatment that consistantly helped expadite a rapid return to work.
Sitting in the 28 degree cold air inside the cooler and being able to wet my head when I needed to was not only benificial to me but to my employer.
First and foremost, I had to be completely honest with my employer and the crew under my supervision. From the very first interview, I had to stress the importantance of being able to break when I needed to without feeling like I was cheating somehow.
Even with the complete flexibility and freeddom to come and go as I chose, it only took seeing me have one attack for the most suspicious person to understand that there was no malcontint or lazyiness on my part, only uncontrolable pain. However even the best boss only lets things go so long, then its out the door!
Employment became a very frustrating event! I always made up 10 fold for any time I had to take off during the day, but even that was never enough!
Good Luck, and remember--honesty is always the best Policy-- An understanding employer is a very rare thing! Pappy
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neetnut
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Re: Jobs and ch
« Reply #2 on: Mar 29th, 2006, 1:37am » |
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I have a job where I least get some support from my employees. They give me shots when I really need them, but then again they always have a solution to heal my headaches. I think that is more annoying then anything.  Thats the thing with people that dont get these headaches, they really don't understand. They have the cures and the it's just a headache they should be able to cure it.
I 'm so gald I found this site to help me get through these terrible headaches.
Anita
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BarbaraD
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Re: Jobs and ch
« Reply #3 on: Mar 29th, 2006, 8:01am » |
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I'm an accountant and a grumpy OLD person. My clients have gotten used to me over the years and when I get hit they KNOW to leave me alone till I'm over the hit. I'll get to them when I get able. My assistant (who has a neice with CH) learned early the signs that I was about to get hit and learned to get people out of my office and explain what was going on and that I would be "out" of it for a little while. She was a peach... She's kept employees from getting maimed or hurt by pulling them (literally) out of my office when they tried to "help" me -- I'm not one who can be "touched" when being hit - I do bodily harm to anyone who touches me!
Now that I'm "semi" retired, I work around the headaches.
But the one thing I've found over the years of dealing with CH and working with them -- I have very little tolerance with people who slack off with "little" ailments and this may not be a good thing. Had an employee who came in with a "horrible sinus headache" and needed to go home (in the middle of a busy day!). I told her they made pills for that and if she went home she could stay at home! She "screamed" at me that I, of all people, should understand about headaches! I was coming down off a hit (about a Kip 9) and had taken cafergot and was not feeling in a sympathetic mood about a damn sinus headache at the time. She went home and I fired her.
When I was episodic, I could go about a month with them, then I had to go on DHE to end the cycle. About three days of DHE and I was down for the count - (about 3 days to a week - depending on how long it took to break the cycle) and I would miss those days at work cause I just couldn't think or even walk. Since I went chronic, I've learned to work with them. Have to -- didn't really have a choice.
Good luck to you....
Hugs BD
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seasonalboomer
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Re: Jobs and ch
« Reply #4 on: Mar 29th, 2006, 8:51am » |
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I am an employer and a sufferer. So, in some respects, I'm lucky - I can adjust my own schedule. But, when I'm in cycle I still have the responsibilities of running my business and having my employees see me as managing my own needs as well as I do my own business.
If I was employing a sufferer I would expect that person to educate me and their fellow employees as to what we they were experiencing. Most importantly, I would not see it as my responsibility to accept the load of their CH problem. It is the sufferer's responsibility to make the employer feel as though the employee he has in his/her employ, just happens to have cluster headaches, and that the sufferer is doing everything possible for it not to affect his/her business. That means actively managing, actively communicating, using all the necessary tools to deal with and, when a hit is no longer manageable, having contingency plans in place to meet the needs of the business.
That means that it is going to place more pressure on the sufferer. Which doesn't sound very "nice" of me but I'm running a business. I've got employees who may be pregnant, or with toddlers with childcare issues, or senior parents that have special needs, I've got people who might want off early every Friday, people who can't seem to get in on time everyday, a variety of needs that I have to manage. And yours would be just another one, albeit unique to you, as an employer, it is just another on the list of many i'm dealing with. Unless I'm made to understand it and th measures you are going to take to make it have as little impact as possible to my business I'm probably not going to view it with much deference.
That may be cold - but that is the way it is for most people. I'm a pretty good employer and am really flexible on just about any issue. But, when it starts to affect the bottom line or damages the fragile balance of a team of employees, I watch it closely with great scrutiny.
When it comes to communicating with employers the employee has to take the lead and show how they are going to make it as much a non-issue to the employer as possible and not simply expect an employer to accommodate everything because you happened to pick the person with CH to work you.
Scott
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| « Last Edit: Mar 29th, 2006, 9:00am by seasonalboomer » |
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pfunk
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I agree with Scott here. I have always worked in the restaurant business and have always been up front, and laid it all out on the table from the beginning. Fortunately the restaurant I have worked at most of my life belonged to my family so I have been in a supervisory/management position for the vast majority. I make the schedule and tkae whatevr time off I need when I am suffering. Honesty is the key in these situations. Don't let youe employer believe that you are hiding anything. When I higher a new employee, I'm sure I let themknow About my CH and am sure to find out what pre-existing they might have before I hire them. That being said, it nevre ceases to amaze me how many new employees turn up with "chronic migraines"  once they've found out about my conditions. If I see legitimate evidence of their conditions, I am willing to work with them. Most often they have just given me an excuse not to work and think that I "... of all people" should understand. And, I do understand but if they are "chronic" you definitely knew about them when I asked about pre-existing conditions that may hinder your work performance. I can't fire you or not hire you beccause of the codntion buut I can fire you for lying to me about it. The only things I ask of my employees is good effort, honesty and don't steal from me.
Now tha I've rambled for so long, the moral is to be honest and up front with your future employers. Most good employer will work with you unless they absolutely have to have someone who never misses work ever(very, very hard to find). My family's been in business 32 years and we have nevr had one employee that showed up to work every day. And most od not have good reason.
Good luck to you!
Patrick
P.S. You may also want to go to the OUCH site and print off a copy of the letter for family, friends and employers so you cna show it to them when you apply.
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Charlotte
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Re: Jobs and ch
« Reply #6 on: Mar 29th, 2006, 1:54pm » |
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I have been with the county as a legal clerk for almost 18 years. When I started, I didn't realize the extent of my problem. I miss very little work, and overcompensate most of the time.
During the past few months, I had a really hard time - forgetting parts of the job and making life inconvenient for others. My office manager was great. She told me to ask for help when I need it. This assignment is one I've had for only 10 months and I am coming up on end of probation soon, so I do need some prayer that I will be able to deliver what is expected of me.
It has been obvious some of the things that were in my mind one day and have disappeared the next because we color code a lot of things and people have seen me lose my former habits and have to relearn them.
I'm fortunate with the group I work with - but if I don't pass the probation period, I will retire. I'm 56.
I think I'm chronic because I never have more than a few days w/o ch. Some little cycles are very mild, and some start out heavy. I see the new doctor Friday, for the first time. My bad cycle ended 3-13-06 and a mild one started 3-18-06.
I miss very little work and that does make up for a lot, but not everything. I try to be very organized and productive to make up for my down time.
Over the years, I have been promoted a number of times, with full disclosure. I found that politics and emotional stress of loved ones with severe illness does make mine worse. I've demoted twice to try to get to a realistic responsibility level.
I dread getting hit at work.
Charlotte
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| « Last Edit: Mar 29th, 2006, 3:19pm by Charlotte » |
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Redd
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Re: Jobs and ch
« Reply #7 on: Mar 29th, 2006, 3:23pm » |
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I work in an industry that also regulates stiffly time lost from work. They knew going into it what I suffered, and that attendance may be an issue. I was assured that it wouldn't be a problem, however it remains a constant issue that they toss in my face monthly, even when I haven't taken a sick day. I've had 2 sick days since Jan 1st this year. One two weeks ago when I sliced my hand and I needed to go get stiches, and today to get a tooth repaired.
I take my hits at work, I don't call in sick for my head. But I sometimes have to call in like today to deal with the aftermath of a bout (IE: the broken tooth from clenching my jaw so hard.)
I too am in WI and it's a hard row to hoe when it's an "At Will" employment state.
No advice for you really, but I can relate all too well.
Pegg
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yikes-another-one
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Re: Jobs and ch
« Reply #8 on: Mar 29th, 2006, 4:57pm » |
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believe it or not, I worked ina daycare while chronic.
I was in the one year old room,
and it was a 5 to 1 ratio....I could be trapped
in there with 5 kids, and no place to hide.
In a way I was lucky, on the bad days there
were low attendance or at least an assistant
around to give me a helping hand...
I think rugrats is a real way to how babies
see the world, becuase these 1 year olds would actually
take it easy on me when my head hurt.
Normally they would be climbing and fighting and
switching otys every ten minutes...
when I had a headache, they would sit down
with one book, and look at the pictures for
20 -40 minutes. They would even trade books
with eacho other and keep reading, unitl My
episode lightened up...then the kid gloves came off,
and we'd all get up and play again....
I was lucky, though.
Most hits came before and after work.
I'd get two before 8am, and then 5 after 5pm...
and an occasional hit at noon or 2
(lunch time) and (nap time)
so I was was lucky.
Any job where there are kids involved, is usually
a tag team affair anyway...and that is good,
so you cna take the ones who want to color or
paly with playdough...and when you can't sit still,
you are the one who does the parachute and ball
games...
Hope you find a way to manage through...
I think a few people have won cases
with Social Security...for disability...
but you know it is rought to prove, and they
always turn down the first and second filings...
more and more I hear you need a lawyer to file...
but I don't know how much of htat is propaganda...
Hugs,
TJ
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superhawk2300
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Re: Jobs and ch
« Reply #9 on: Mar 29th, 2006, 5:43pm » |
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Where in WI are you? I live inthe Milwaukee area and may have some leads for you depending on what your expectations are.
I work at a place where my boss is a "just get the work done" type guy. As long as the work is done he doesn't care what I do. Now I started out as a consultant there so that created a different enviroment from day one.
Others have been let go for missing too much time - it is allif they really like you or not.
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thebbz
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Re: Jobs and ch
« Reply #11 on: Mar 29th, 2006, 8:53pm » |
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Lets see this is Wednesday? Since Monday ...6 Imitrex injections, 1case of Mountian Dew, 2 gallons of coffee, 6 e-tanks of 02. I volunteered to go in and work on Friday which is a holiday. I am however very tired and every one calls me an a$$hole.  You need determination,timing, the proper meds, and a good doc.
Oh ya broke down and started a pred taper yesterday. They thought I was an A$$ before..lol
jb
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Linda_Howell
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Re: Jobs and ch
« Reply #12 on: Mar 29th, 2006, 9:06pm » |
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Oh John.....PULEASE tell this person what you do...
WITH, CH no less. 
Cluster mom...if he can do this you can too. Trust us.
Linda
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thebbz
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Re: Jobs and ch
« Reply #13 on: Mar 29th, 2006, 9:16pm » |
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 You got it Linda..seems to be a trend here I saw another post about working. This really gets us down for sure. I feel like the 10 round is coming up...but the towel will not be thrown in...just put back in the freezer to cool off...now make me take my advice
jb
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superhawk2300
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Re: Jobs and ch
« Reply #14 on: Mar 29th, 2006, 9:51pm » |
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Sure Jonny I could have looked there but then, well, er, um, you know.......
Cluster_mom - You're a little out of my terrirory, sorry. I do know a couple of girls that work at the Fireside, but that prolly isn't a very good option. Sorry, I will keep my ears peeled for you though.
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Jasmyn
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Re: Jobs and ch
« Reply #15 on: Mar 31st, 2006, 2:48am » |
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When I still worked for the Billiton Group as a coordinator, I was up front about my CH. Honesty does help but if you do not do the time at work, your butt is on the line.
I always carry my Imitrex with me, so I will excuse myself from a meeting and run to the bathroom when I feel a hit come on and inject, then back to work even with the shadow afterwards.
If the trex won't kill the beast, I arranged with the company medical station to use their O2. My boss and the company were very understanding and supportive because I worked my time in the bathroom or medical station back and more. My job was always well done and I even got promoted.
It sure does take some extra hours at home and from home, to keep ahead of the CH but if you need to keep your job, it can be worked around.
The worst problem was the hits in the morning before work, then I'm just a little late(had to get over the hit before I could drive to work) but the bossman always knew I would work late if I come in a bit late. Never missed a day at work.
When I bought a bar, the times were more flexible for me but I still had to be on top of the game. With a 24 hour bar you cannot take a day off and your own financial survival depends on it to make it work, CH an'all.
So, yes, it can be done. I would rather be working now than sitting at home in a godforsakencountry without the work stress. Stress is good for CHers, it keeps you going, keeps the Beast fighting for his life and it helps with carrying on with life and not just CH.
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Jazz
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Mikey99
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Re: Jobs and ch
« Reply #16 on: Apr 6th, 2006, 8:53am » |
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Wow! What a great topic. One of the most challenging for the CH patient. I guess I never really thought about not working as an option so no matter how bad the headaches would get, I always showed up at work. When I was in pain, I would take my meds and go some place quiet until the pain subsided. One time my boss allowed me to use his office. I will never forget that.
I have always worked double and triple shifts on my job so management always gave me the benefit of the doubt -- thank God. It also helps that I am a professional and don't get paid for overtime. In my line of work, we do what needs to be done. You are entitle to take comp days for your double shifts if you choose to.
On the rare occasions that clusters have side lined me, my company supported me.
I can only thank God for putting me in the right position.
My advice would be to pray for a good positon.
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BMoneeTheMoneeMan
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Re: Jobs and ch
« Reply #17 on: Apr 7th, 2006, 1:17am » |
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well, Mom, one thing that I do is always show up.
Even if you get 7 hits overnight and only get 2.5 hours sleep........for weeks......still show up, and do your darndest to do a good job.
Granted, if you have major sleep dep, it will be almost impossible to work efficiently and well, but maybe kick in a few extra hours to help pick up the slack.
I'm lucky though, I mostly get hit at night. When I do get hit in the daytime I have to excuse myself.
Think of it from an employer standpoint. You have made an agreement to perform work to help run the company. When you dont show up, it's a major pain in the ass to everyone.
Thats just my 2 cents.
PF wishes
BMonee
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bigyin2
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Re: Jobs and ch
« Reply #18 on: Apr 11th, 2006, 4:38pm » |
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Don't want to sound macho ,but.........
This affliction does not evoke understanding and compassion,from colleagues/friends,who also have "terrible headaches".
You just have to get on with it,and constantly remind yourself that there ARE worse conditions.
I know it doesn't look good to come out of the toilet one hour later at work,but it still beats lying on the floor at home,DEFEATED.
It makes you stronger.
bigyin.
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Icey
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Re: Jobs and ch
« Reply #19 on: Apr 13th, 2006, 5:13pm » |
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I agree , Some days I go in work looking like apsolute shit but I got there . I'm lucky too cause if it gets that bad I just say i've gotta go home . I find I can work the shadows easier when I'm at work cause my brains getting confused , whereas if I was at home I would be thinking just of the headache I read somewhere where it said don't let it take over your life , and that's my motto not always easy I know
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Tom K
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Re: Jobs and ch
« Reply #20 on: Apr 14th, 2006, 1:06pm » |
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I wish I could give you some insight on how to approach your employeer, but I can't. I have just always found a way to work through it. I'm not trying to sound all big and bad, but working in a kitchen during the 7PM rush on a Friday night while getting hit, kinda makes you tough it out. I've been working covers and had tears streaming down my face because I couldn't get to the bathroom to shot Trex. You just buckle in and ride it out, at least I do. What would help me out once in a while was to have the table runners make me a pint of espresso iced. Slam that and get back to work. I used to take time off when I could, but over the past few years, I have made it a point to go in, just make sure that there is O2 and Trex lined up in my car if I need it. I am to the point now, that I can walk out of the rush for 5 minutes, but it still sucks. Like I said before, not trying to come off all high and mighty, but that is what I did to deal. Your Milage May Vary.
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