Welcome, Guest. Please Login or Register
Clusterheadaches.com
 
Search box updated Dec 3, 2011... Search ch.com with Google!
  HomeHelpSearchLoginRegisterEvent CalendarBirthday List  
 





Page Index Toggle Pages: 1
Send Topic Print
A little unsolicted advice from an oldtimer... (Read 1922 times)
BarbaraD
CH.com Alumnus
***
Offline


Hugs to ya


Posts: 8333
Douglasville, TX
Gender: female
A little unsolicted advice from an oldtimer...
Feb 9th, 2010 at 1:28pm
 
I keep reading here about "how do I handle work and CH?"

Well, I'm an accountant and I very seldom miss any work (unless I'm playing and that don't count).

I'm also a chronic CHer and get hit regularly (daily). YOU can cope! My work is demanding and detail orientated and I've been coping for years.

How do you explain your condition? Very simply.  Example: Tomorrow I have an IRS audit at a client's office. I've spent days getting ready for it. The weather has suddenly changed and my head doesn't do well with weather changes, SO, I'm showing up at the audit with my O2 in the car and I will explain to the nice auditor that I have a chronic condition and if I get hit, I WILL leave without notice and go to the car to get rid of my headache and THEN when it's gone we will continue OUR business.

I've been hit during several audits and only once had my O2 handy and it was a fiasco a couple of times, but the IRS got a quick course in CH (not one they wanted repeated  Smiley).

One thing - I NEVER apologize for my condition - I cannot HELP it - I did not ask to have CH and I can't do a damn thing about it - it HURTS, but it happens. You just have to build up enough "self-confidence" to overcome the "ashamed" feeling that you're not perfect. You have a medical condition that you cannot help and other people do not understand and that's just a fact.

I know, you're saying, "That's easy for you to say!" No, it's not... it took a while to build up a tolerance to not giving a damn about what other people think.

On this website there are "letters to employer" detailing out what's wrong with you and what you need. Use the tools that are available.

We all tend to want to be alone when we get hit and that's fine, but if we do get hit in a crowd, deal with it.

Lordy, I got hit in the middle of O'Hare airport and survived. (Some of the people in that airport don't ever want to see me again, but....)

If this sounds like I"m not being supportive - that's not it at all. I KNOW how you feel, especially if you're new to CH - you're scared, you're ashamed, and no one understands. Been there - got the t-shirt. But most of the old-timers here have learned to cope with our ailment and are here to help show you this isn't the end of the world. We just have a disease that we have to learn to live with.

The best way to deal with our disease is to learn everything you can about it - what works for YOU, get a good doc you can work with and then learn to cope. Your attitude is the best DEFENSE you have - USE it.

Hugs BD Kiss
Back to top
  

What don't kill ya, Makes ya stronger!
 
IP Logged
 
wip5150
CH.com Veteran
***
Offline


I have tired head


Posts: 119
Naperville, IL
Gender: male
Re: A little unsolicted advice from an oldtimer...
Reply #1 - Feb 9th, 2010 at 2:06pm
 
Nicely said.  I have a demanding job as the Senior VP of Sales for a national marketing company and, even though I'm episodic, I have had to deal with getting hit in all sorts of situations:  in front of clients, during a presentation, while traveling (I got a kip 8 once at O'Hare...must be the fumes!).  The point is I don't let this disorder/disease/defect control me.  I have let pertinent coworkers know about my little affliction and, to a person, they have been supportive. 

My $0.02 and that's about what it's worth.
Back to top
  

Ever dance with the devil in the pale moonlight?  I have, and man it hurts.
http://www.facebook.com/home.php#/profile.php?id=1 wip5150  
IP Logged
 
DennisM1045
CH.com Alumnus
***
Offline


One wave at a time!


Posts: 3437
Haverhill, Massachusetts, USA
Gender: male
Re: A little unsolicted advice from an oldtimer...
Reply #2 - Feb 9th, 2010 at 2:16pm
 
Barb, I love you  Cool

-Dennis-
Back to top
  

Where there is life, there is hope.
Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.
dennism1045 dennism1045 524417261 DennisM1045 DennisM1045  
IP Logged
 
Chad
CH.com Hall of Famer
*****
Offline




Posts: 738
Emmaus, PA
Gender: male
Re: A little unsolicted advice from an oldtimer...
Reply #3 - Feb 9th, 2010 at 3:00pm
 
Applaud, amazing Barb!

I've gotten hit many times without a weapon and explained to my co-workers what happened and they understand as well as my boss.  That letter helped a ton.
Going out to my car to fight it off is the way I have done it for years.  Then I come back to work and pick up where I left off.  I'm only episodic so I have no room to brag, but even with this disease my attendance has been perfect for 6 straight years.
Back to top
  

When the PAIN starts, I FIGHT back!

Rivea Corymbosa seeds were my KO punch, now D3 is the front runner!
 
IP Logged
 
ordiefam
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 21
Re: A little unsolicted advice from an oldtimer...
Reply #4 - Feb 9th, 2010 at 3:42pm
 
I have my o2 tank and mask with me and just close my door a little. I am new to all this still, but I have to work and I have to take care of myself, so both will work together:) I have a great support here at work, I work in a government hospital so they understand. I have not mentioned CH, because that is new. I have occipitical migraines and CH. Still learning the differences. About ready for some o2 now..... Shocked
Back to top
  
 
IP Logged
 
koctail
CH.com Junior
**
Offline


I Love CH.com!


Posts: 52
Re: A little unsolicted advice from an oldtimer...
Reply #5 - Feb 9th, 2010 at 4:43pm
 
great post. i have suffered for 20 years with ch. i will never let ch stop me from living a normal life. i have my o2 here at work and if i get hit i close my door and breathe deep for 15 minutes. a nice break in my day actually. i always wish there was a better name than cluster headaches. what we experience is not an ache. its like cluster headintensef'ing pain. ha.

i will never give up the fight against my ch. its a constant and evolving battle, but i will never let it stop me from doing all the things i want to in life.
Back to top
  
 
IP Logged
 
JustNotRight
CH.com Sponsor
***
Offline


CH version 15.0.8 member
since 2005 aka GingerS224


Posts: 1300
Wilkes-Barre, Pa (USA)
Gender: female
Re: A little unsolicted advice from an oldtimer...
Reply #6 - Feb 9th, 2010 at 5:18pm
 
Excellent Post Barb ! 

I work full time with lots of OT the last few months, seems to go that way for the last half of the year where I work.  10 Hour days are not uncommon.  I too am chronic CH and luckily have a very understanding group of people to work with.  I do get told frequently "I don't know how you do it!"  Well it's just like any other obstacle, you put one foot in front of the other and just keep on going. 

Again Kudos on the post, very nicely done.

Back to top
  

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
An eye for eye only ends up making the whole world blind.
M.K. Gandhi

If you are going through hell...Just keep going
WWW JustNotRight gngr.stewart GingerS224  
IP Logged
 
lorac
CH.com Old Timer
****
Offline


Imagine


Posts: 433
Tennessee
Gender: female
Re: A little unsolicted advice from an oldtimer...
Reply #7 - Feb 9th, 2010 at 6:05pm
 
Hey tough girl...thats great.   I feel the same way.
    but I didn't always.   Took some time to get in that zone. 
   Some newbies might not feel that empowered yet, at least till they figure out that they can control it.
   Hope it gives em some hope though.
Back to top
  
 
IP Logged
 
seaworthy
CH.com Hall of Famer
*****
Offline




Posts: 706
Re: A little unsolicted advice from an oldtimer...
Reply #8 - Feb 9th, 2010 at 7:03pm
 
Quote:
Lordy, I got hit in the middle of O'Hare airport and survived


Now that could get on the "No Fly List" pretty darn quick.

I have one simple rule:

I will never let this condition define who I am.
Back to top
  
 
IP Logged
 
jon019
CH.com Alumnus
***
Offline


"Ya gotta believe!"


Posts: 1656
USA
Gender: male
Re: A little unsolicted advice from an oldtimer...
Reply #9 - Feb 9th, 2010 at 9:00pm
 
What a great post! If there was a "clusterspeak" hall of fame...that'd be in it....

AND....I want one of them "t-shirts"... Cool

Hugs back dear...hugs back Smiley

Best,

Jon
Back to top
  

The LARGE print giveth....and the small print taketh away.    Tom Waits
 
IP Logged
 
shaggyparasol
CH.com Veteran
***
Offline


I Love CH.com!


Posts: 192
Portland, OR
Gender: male
Re: A little unsolicted advice from an oldtimer...
Reply #10 - Feb 13th, 2010 at 10:48pm
 
Shaggy concurs, nice work Barb.

I am episodic and have gone out of my way to let people know about my clusters.  I was undiagnosed for so long that if I can help anyone get a proper diagnosis and proper treatment it is worth the hours of explanations.  One of my friend's coworkers has them too and I turned him onto this website.  So much pain for so long, if I had known about oxygen and the alternatives 20 years ago a lot of my life would have been different.

So I go out of my way to let people know.  If we all did I bet we would find a lot more of us. 

I also respect the 'job sensitivity' issues as I used to have a job where CH's wouldn't be acceptable (fortunately I was undiagnosed and confused about the headaches) so just dealt with them.

Thanks for the great post!

--Shaggy
Back to top
  
 
IP Logged
 
Jbrigham77
CH.com Junior
**
Offline


I'm Me, nothing more,
nothing less.


Posts: 30
Poquoson, VA
Gender: female
Re: A little unsolicted advice from an oldtimer...
Reply #11 - Feb 14th, 2010 at 6:26pm
 
I suffered from CH abou 10 yrs before I was diagnosed. Well we think.  I have migraines and CH so it's hard to pinpoint the exact moment I 1st had one.  I remember sleeping in my closet a few weeks at a time when I was younger, anything to get away from noises and suffer in quiet.  but I rarely missed any time from work.  Only time I really have missed is for appts to the Neuro or right before I was diagnosed I had to be taken to the ER from work but that is it really.  I still go to work every day after a bad night, maybe a little coverup on my face to hid the circles under my eyes from lack of sleep but no one would know.
my work now is great, any time I need to get my current cycle under control is given, they understand my O2 tank and have read the employer letter.  It helps that I work for a health insurance company and my boss was an ER nurse years ago.  But it tooks me years to even feel comfortable taking the portable tank with me, now I don't care.  It's easier than missing work-I just got hide in a conference room for a bit and come back good as new.
Back to top
  
 
IP Logged
 
seasonalboomer
CH.com Hall of Famer
*****
Offline


CH messes with my isness


Posts: 2517
Charlotte, NC
Gender: male
Re: A little unsolicted advice from an oldtimer...
Reply #12 - Feb 16th, 2010 at 11:04am
 
Smiley fukineh!
Back to top
  

Scott
 
IP Logged
 
T.O. Wifey
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 3
Re: A little unsolicted advice from an oldtimer...
Reply #13 - Feb 18th, 2010 at 11:59am
 
This is great!  Thanks, Barbara.  My husband's a relatively new sufferer, and only at night until he recently got one while he was at work.  He's devastated, and has felt that he can't possibly work like this (he lectures twice a week).  I'm going to print this out for him.
Back to top
  
 
IP Logged
 
boxcorner
CH.com Junior
**
Offline




Posts: 39
Re: A little unsolicted advice from an oldtimer...
Reply #14 - Feb 24th, 2010 at 1:54pm
 
One of the best pieces of advice on this website.
Back to top
  
 
IP Logged
 
Skyhawk5
CH.com Alumnus
***
Offline


I love YaBB 1G - SP1!


Posts: 1320
Ypsilanti, Mi. USA
Gender: male
Re: A little unsolicted advice from an oldtimer...
Reply #15 - Feb 24th, 2010 at 3:45pm
 
Thank you Barb, I needed that.

Don
Back to top
  

Though I walk through the valley of the shadow of the Beast , I  have O2 so I fear him not.
Skyhawk5655  
IP Logged
 
Joni
CH.com Old Timer
****
Offline


Knowledge is Power


Posts: 476
Gender: female
Re: A little unsolicted advice from an oldtimer...
Reply #16 - Feb 27th, 2010 at 1:52am
 
I agree and have stated that many times, here!  It has never entered my mind to describe myself as a cluster headache sufferer to anyone.  As I have said before, it is way down on the list of important characteristics about me.  It is not because it is easy...I am just determined, I guess.  I also had the luxury of growing up around family members with them that never missed a beat in their lives or let it define them in any way.  Good modeling.  Of course, in the middle part of my cycle...I hate it!!!!!!!!!!!!!!!
Back to top
  

Experience:  That most brutal of teachers.  But you learn, my God do you learn.  -C. S. Lewis
 
IP Logged
 
Page Index Toggle Pages: 1
Send Topic Print

DISCLAIMER: All information contained on this web site is for informational purposes only.  It is in no way intended to be used as a replacement for professional medical treatment.   clusterheadaches.com makes no claims as to the scientific/clinical validity of the information on this site OR to that of the information linked to from this site.  All information taken from the internet should be discussed with a medical professional!