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Scotty_Dog
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What kind of work do you do when...
« on: Aug 5th, 2002, 11:33pm » |
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I am having a hell of a time finding a job that I can do when the beast comes to visit. I am a Micorsoft Certified Systems Engineer, I have worked as a Boilermaker and a Field Engineer. All those jobs require me to be at a place at a time of day on a regular time frame, teh beast will not let me do that.
Any suggestions on work I can do from home or when I am not in teh shower frying my head?
Thanks for any advice.
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Slammy
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Re: What kind of work do you do when...
« Reply #1 on: Aug 5th, 2002, 11:57pm » |
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Scotty,
That's a tough question to answer... I am an assistant vice-president for a telecommunication firm in Southern California, and have had to deal with the beast at work all my life. Fortunately for me, I just close the door and blinds in my office when it hits there. However, more importantly, I refuse to allow Clusters to dictate my lifestyle or career.
I make sure those that are close to me ( my boss, for one), know what I am going through, and what to expect. Over time, they truly try understand and sympathize....
If the beast absolutely refuses to allow you to do anything like a normal 8-5 desk job, then I would recommend consulting.
Good Luck,
Slammy 
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Scotty_Dog
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Re: What kind of work do you do when...
« Reply #2 on: Aug 6th, 2002, 12:55am » |
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Slammy
I have tried to not let the beast control my life, but I find that now that I am older, I have less strength to fight. The beast likes to come right after I fall asleep, so I trade off ½ hour of sleep for 1 hour of hell. This is not a good ratio, so I end up sleeping around 1 to 2 hours a day and after a month or so, I become a mush head. I forget things, drop things, and I am all around klutzy. I also do not like to let people know about CH because they are always pitying me and asking me how I am doing.
I am working on a novel, but now that the beast is back, I have lost a lot of my creativity. All I want to do is sleep, but my bed with my lovely wife in it is a torture chamber for me and I avoid it at all cost.
I was mainly interested in what kind of work other CHer’s do for a living and how they manage it during there cycles. I appreciate your input on consulting, but as you know, an IT guy has to be married to his work, and if you are over 25 and married, you have 2 strikes against you already. Networking is a cut throat business, and maybe I should hammer out the novel and make a fortune so I can retire and get the medical attention I need.
Everyone, please give me some ideas, thanks.
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Doc says,
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Charlie
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Re: What kind of work do you do when...
« Reply #3 on: Aug 6th, 2002, 2:15am » |
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Scotty:
I understand your question but I'm not a good example. My CH hasn't bothered me in 11 years and I was episodic with fairly short runs at the time and I’m an epileptic.
I have worked in antiques and collectibles in one way or another for 30 years. I've worked for people, with people and now on my own. Those for whom I have worked for the most part, understood my seizures and they almost never got in my way as they are usually short-lived. I’m sure my CH wasn’t understood but it was thought of by them as part of my seizures. Having a more common but dangerous thing like epilepsy made life with CH more bearable.
Granted, my knowledge of this area is special but maybe it will give you an angle. Have you ever tried sleeping in a recliner? I had one or two fewer attacks when I tried sleeping this way. Just an idea. I wish I had something more. Keep reading and keep in touch.
Really sleepy old Charlie
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Drk^Angel
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Re: What kind of work do you do when...
« Reply #4 on: Aug 6th, 2002, 3:24am » |
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Hell... The only reason why I'm not in the unemployment line, is because of FMLA. Keyin' orders ain't a physically demanding job, but it can be a bit mentally demanding, and it could cost my company alot of money if I miss key an order. I've been thinking about starting a small home office to provide paid personal computer support and consulting for the computer illiterate in my area. Can't even consider getting something like that off the ground until the cycle ends though.
PFDAN.................. Drk^Angel
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Karla
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Re: What kind of work do you do when...
« Reply #5 on: Aug 6th, 2002, 5:00am » |
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I was a consultant for 10 years. It is a very competative business and they expect the best out of you and nothing but pure professionalism since they are paying big bucks for your services. They do not want to hear about your personal problems since you are a mere temperary employee of there servicesess. They expect you to be at your desk the whole time you are there and not up pacing around. You have very tight deadlines to meet no excuses. If they are not met you are let go. No excuses. I had to go on disability. I would not recomend consulting.
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Karla
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cat195
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Re: What kind of work do you do when...
« Reply #6 on: Aug 6th, 2002, 7:13am » |
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This is my first post, but I had to reply.
I have had CH since my college days 30 years ago. I am eposodic, with the first 15 years having cycles at different times of year. I was a stay at home Mom with a daycare so it didn't affect me too much, although it is difficult to attend to little kids when you're having an attack. For the past 15 years my attacks have all come during the summer. Incidently, I started teaching about 15 years ago, so CH hasn't affected my job, but it has ruined many summers (like every other one.) I return to school and feel like, "What happened to my vacation?" I am currently in a cycle and have been since the middle of June. I sure hope it stops soon, as school begins for my on Aug 26.
Cathy
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MarkHW
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Re: What kind of work do you do when...
« Reply #7 on: Aug 6th, 2002, 8:13am » |
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I'm chronic and have 1-3 clusters per day, every day (unless medicated and then I seem to only go a week or two pain free).
It's hard to work with them, but this is what I do....
1. I gave my boss a copy of the "Ouch" letter about what clusters are.
2. I have oxygen and imitrex in my office.
3. I set my alarm an hour early. If I wake with the beginnings of a cluster... I inject and go back to bed. If there is nothing... I just go back to bed.
4. I have warned my work that I will be late at times. I make up the time at the end of the day if I have to be in late.
5. I work my ass off when I'm not having a cluster so they know that I am a hard worker and that the clusters are not an excuse to blow off.
I am a Senior Systems Administrator for a small R&D division and a single father of two boys (I have full custody). There are days I feel like giving up, but I can't.... my boys need me... I keep figuring my neuro will find something that works someday!
Mark
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Gayle
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Re: What kind of work do you do when...
« Reply #8 on: Aug 6th, 2002, 8:33am » |
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Hi Scotty:
I drove big truck for years so whenever I got hit I could pull over and wait it out and make up the time by not stopping any more often than I needed to - just fuel, grab a sandwhich and go. Could take the time to eat properly when the load was delivered.
I hung up my keys last Sept. and now I teach all the classroom stuff - if I get hit now I can just put a video on and go look after it.
On my way now to do an air brake course and have some fun today.
It's an option maybe if you want a totally different change in careers and life style.
Gayle.
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Candy
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Re: What kind of work do you do when...
« Reply #9 on: Aug 6th, 2002, 8:39am » |
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Hey Scotty...what about something that your wife could help with when you can't work? My hubby works for a collections contractor and it can be very flexible. Here's how it goes:
The company contracts his boss, he subcontracts to my hubby. His boss works from home via phone and 'puter, running the day's work with his subs and picking up messages from the company. There is also billing, customer complaint resolution and stuff like that involved in his job. He also has a manager to handle some of that for him. I have very little formal education or experience in this line of work, but I've seen what they do and I know I could take over for either of them at any time.
My hubby does the actual collections, paid on a commission basis. To a large extent, he can choose what days he works, and he has between 9 a.m. and 9 p.m. each day to get through the day's work. I'm technically employed by his contractor, even though I only do 4-6 calls a mth, compared to his 750+. That way, if he can't go out, I can. We figure when the Beast hits, he'll be able to manage his time for awhile until it gets really nasty, at which point I'll take over. He's episodic, which makes this a little easier to manage, but I would think there should be something like this that would work well for chronics too.
The main thing is to be sub-contracted...more time management flexibility. I should also mention that we have the same issues of kids to care for, and other commitments as a lot of you out there. I'm sure I'll be run ragged when the time comes so for now I'm working on getting myself as healthy as I can be so that I have the stamina to get through it. I figure it's a small price to eliminate his worrying about this.
Have you checked at your local employment offices to see if they can register a profile for you and notify you if something appropriate comes up? Best of luck to you, and I'll let you know if I come up with any other ideas.
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Scotty_Dog
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Re: What kind of work do you do when...
« Reply #10 on: Aug 6th, 2002, 10:26am » |
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These are some great ideas fokes, but right now, I am in the middle of a cycle and I am finding it hard jsut to think. Please keep the ideas coming and I am concedering them all, even career change, because IT work is jsut too demanding and I have been a contractor for over 3 years, and I am real tired of being let go the minute the work is done.
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Opus
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Re: What kind of work do you do when...
« Reply #11 on: Aug 7th, 2002, 9:28pm » |
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Talk to your nuro about ways to get though the night. You can try my method of sleeping proped up in bed or If I am in a Ch and can knock it down to a 7 then I can sleep a little in a recliner. Hope this helps.
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Zed-Zed-nine plural-Zed alpha,
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kim
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Re: What kind of work do you do when...
« Reply #12 on: Aug 7th, 2002, 9:54pm » |
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Unless we are independently wealthy, we must all work to maintain the basics.
I am episodic sufferer. For the most part I got hit AFTER work or BEFORE work - not usually DURING work. For the most part, while in a cycle, I was (i) exhausted (ii) stressed (iii) distracted (to say the least), and (iv) depressed. But, was somehow able to ride out the storm until it passed into distant memory once again.
I do not belive the answer to clusters is necessarily to alter "what we do for a living" but rather how we deal with the clusters themselves. Obviously if you are doing something you hate anyhow, then by all means, go for it. Otherwise, ya just gotta DIG DEEP.
Find a way. If you want to, you will.
Best luck, Kim
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Not4Hire
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Re: What kind of work do you do when...
« Reply #13 on: Aug 7th, 2002, 10:00pm » |
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hey Scotty......if yer a Certified Microsoft Systems Engineer ....AND a Boilermaker.......howzabout fixin this FUBAR'd board......how many ISE storms we gotta endure?.......... just kiddin'.....kinda........
......DJ's pet fixer-boys seem to be havin.......mixed results.....know what i mean? ;D
...at least turn down the "gain" on yer picture......the glare is givin me a headache.......... ;D ;D ;D
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| « Last Edit: Aug 7th, 2002, 10:03pm by Not4Hire » |
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sailpappy
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Re: What kind of work do you do when...
« Reply #14 on: Aug 8th, 2002, 12:10am » |
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;D ;D Scotty,
I don't know how mechanical you are, but I use to do Apartment maintainence and it was perfect because I could usually quit in the middle of what ever I was doing and go back later to finish it. Apartment managers are usually very understanding people and if you tell them going into the job about the cluster problem they will help accomadate you in any way they can! Especially if your dependable. honost and good at the work.
Or maybe you and your wife could set up a computer help business for beginning users. You can do a lot of it from your home phone line just by talking them through the problems. as most beginners have software configuration problems and properties problems the majority of the time anyhow!
Just food for thought--------------Pappy ;D
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Scotty_Dog
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Re: What kind of work do you do when...
« Reply #15 on: Aug 8th, 2002, 3:00am » |
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Not4Hire
I would love to fix the Board, but it is an Apachee server, which rund on Unix, Solarus, or Linux, none of witch are my fortay'. As for my picture, If you look close enough, you can see that I caught the Beast as it was taring my skull open.
The main reson I started this thread, is to just find out what all the Ch's do for living, and yes, I am trying to find another field to get into that I can work around the beast as best I can so I can be reliable and hardworking and honest, as well as not get embarest everytime I get hit.
In the IT field, which I do like, I was told by a boss who I tried to explain Ch too this, "If those headaches are that f%%^n bad, why don't you get a gun and end them once and for all?"
Now with people who are that understanding to work for, I think I want to keep them out of the loop as much as posible.
Come to think of it, if I did have a gun at the time, I could have ended ONE of my headaches that day ;D
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| « Last Edit: Aug 8th, 2002, 3:01am by Scotty_Dog » |
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Linda T
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Re: What kind of work do you do when...
« Reply #16 on: Aug 8th, 2002, 9:20am » |
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Dear Scotty. I wish I had the magic words to tell you exactly how to manage your work life and CH. But I don't.
Past cycles I only got hit at nite and while I was tired and exhausted and everything else, I did manage ok during the day at the office.
This current cycle has been soooooo different. I wake up with ch, sometimes the fun started as early as 10a and would continue until 6p (45 min ch - 45 min break - 45 min ch - 45 min break, and so on). I too spent a lot of time in the shower. It's pretty tough to work through that and quite frankly, I didn't. I am a work at home freelance paralegal. I was very lucky in that I spoke to the attorney's I work for - explained my situation - and did what I could when I felt up to it. Which wasn't much. Money wasnt rolling in either.
Hang in there. Imitrex/O2 are all good suggestions. Also, as far as sleep goes I've read that dramamine should help you get some sleep without going into REM (which starts the attack). Haven't tried it myself but heard it works.
Good luck and I wish you PFDAN always, Linda t
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What a long, strange trip it's been!
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gtarman
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Re: What kind of work do you do when...
« Reply #17 on: Aug 8th, 2002, 12:49pm » |
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Yo, Scotty_Dog - the former boss thing - nobody here would've blamed ya for shootin' the insensitive "not a very nice person" (trying to save DJ some editing)!
I work in student loan collections & finance, got my own litte "cubie", been here 15 years. Have to fight the headaches every day (I've been chronic since last year), however, several other people here have migranes so they sorta understand, even if none of 'em wanna trade with me (HA 3-5 days with several weeks off in between? Hell yeah, I'll trade). Even though I'm chronic, the beast hasn't written a definate schedule for me - last year June-Aug was sheer torture but since then my pain level varies between KIP2 and 5 daily. So I use my vacation and sick-leave time as needed and cope, day by day...
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Weldon
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Re: What kind of work do you do when...
« Reply #18 on: Aug 8th, 2002, 8:30pm » |
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Hey Scottie Dog the recliner thing that Charlie and
the others were talking about works about40% for
me . I jacked the head end of my bed about 8 in. and
it works 90% of the time to stop the night one's.
I'm a dirt contracter the rest of the time . Hope this helps
Weldon
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Opus
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Re: What kind of work do you do when...
« Reply #19 on: Aug 8th, 2002, 8:47pm » |
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I am a journeyman electrician and the beast only hits at work with shadows. I am some times late also, but I try to make myself important to the job I am on so that it is overlooked. I have been hit at work in the past but I managed to find a place to hide for an hour. I have to wear a hard hat which can be unbearable with a 3 or higher but so far the benifical stress at work is enough to keep the beast at bay.
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Zed-Zed-nine plural-Zed alpha,
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Scotty_Dog
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Say, what is that strange feeling in my ARRRGGG!!!
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Re: What kind of work do you do when...
« Reply #20 on: Aug 9th, 2002, 9:57pm » |
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You all are being a big help, but I think you need to know more about mine to understand why I ask.
I am an episodic sufferer with regularity in the attackes. They last for almost exactly 1 hour and they start my day at 2AM, then 4 then 6 then 8. A few hours off, then 1PM, 3PM the ocasionly at 5PM. If I try to alter my sleep scedual, they hit within 1/2 hour of falling asleep, sitting up, or not. They are always a 10, (like 10 discribs it). The only time I get a break is between 6PM and 2AM, and that is only if I am caffeened up and alert.
I hate complaining to anyone, especialy you all because you do not need to hear more pain, but God! What's a poor boy to do?
My question is more amed at finding out about you guys. I am just curious what you all do for a living and how you work around the Beast, (sould I be capitalizing the "Beast"?, I mean, does it deserve that kind of respect?)
I have grown rather fond of you all rather quickly and, like you all, I care about you, and not just my own stinking life!
Please keep posting, I find it fasinating finding out what all of you do for a living and how you cope.
LOL
The Scotty_Dog ;D ;D ;D
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| « Last Edit: Aug 9th, 2002, 9:59pm by Scotty_Dog » |
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