Click this link to read a post I like on the clusterheadaches.com message board...

BlueMeanie

Ex Member

Re: Letter to Employers & Colleagues
Reply #25 - Oct 5^th, 2005 at 6:15pm

Definately an excellent letter for employers, family and friends. Ever since I showed the letter to my boss, she would ask me everyday if I'm getting shadows or got hit at night etc. and wanted all the details about CH's.

She now only asks once in awhile if my cycle started yet. Luckily for me, I keep saying not yet.

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jon019

Ex Member

Re: Letter to Employers & Colleagues
Reply #26 - Oct 5^th, 2005 at 10:06pm

Quote Simon

All I've ever asked was that my name is on it! Just a little bit of conceit on my part.

Anyone welcome to use it, and put it on websites. Good to hear that it is still having some use.

Might be worth noting that it has been translated into American....

Baa

Hi Simon,

Your name! dang, if I had a first born he'd be named after YOU! It is a wonderful letter.

I have not yet shown it to friends and coworkers but I'm getting closer. This is such an self focusing condition that I have a hard time including others. The ONLY ones that understand (at least it seems to me) are on this list. It's a big leap to try to share the pain because of the fear of how it will be interpreted by others.

I've heard every one of the last part of your letter. May I have the courage to at least try.

Wondered who you were. Delighted to see your post. Many thanks.

jon019

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jason1212 CH.com Junior Offline I'm out of my mind please leave a message Posts: 87 Tampa, FL USA Gender:	Re: Letter to Employers & Colleagues Reply #27 - Oct 26^th, 2005 at 2:20pm Hey Eric, thanks for posting this. I've needed this for a very long time. -Jason
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lionsound

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breathe

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Re: Letter to Employers & Colleagues
Reply #28 - Nov 26^th, 2005 at 9:21am

I am pregnant

and I gave a copy of this letter to my obstetrician. My OB read the letter and liked it a lot and also emailed alll the other docs in the practice about me. She put in my file so all the docs in the practice get a look at it if they treat me and it goes with my info over to the hospital for when I deliver in late December.

-lionsound

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tanyae CH.com Newbie Offline I love YaBB 1G - SP1! Posts: 5 x0\|Sheridan\|USA\|\|0\|0\|WY,Wyoming Gender:	Re: Letter to Employers & Colleagues Reply #29 - Nov 26^th, 2005 at 9:45am Where can I find "Simon's Letter"?
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E-Double CH.com Alumnus Offline Are we ourselves? Posts: 6948 Commack,New_York Gender:	Re: Letter to Employers & Colleagues Reply #30 - Nov 26^th, 2005 at 9:52am tanyae wrote on Nov 26^th, 2005 at 9:45am: Where can I find "Simon's Letter"? on page 1 hit the hyperlink. While you are there...Join OUCH!
Back to top	I can't believe that I have to bang my Head against this wall again. But the blows they have just a little more Space in-between them. Gonna take a breath and try again. IP Logged

tanyae CH.com Newbie Offline I love YaBB 1G - SP1! Posts: 5 x0\|Sheridan\|USA\|\|0\|0\|WY,Wyoming Gender:	Re: Letter to Employers & Colleagues Reply #31 - Nov 26^th, 2005 at 10:01pm Thanks, I did sign up while there! Great letter like you all said.
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Delts CH.com Newbie Offline I love YaBB 1G - SP1! Posts: 14 x0\|Hastings\|Great_Britain\|\|0\|0\|	Re: Letter to Employers & Colleagues Reply #32 - Dec 1^st, 2005 at 1:55am Simon that is the best explanation of CH i have heard every time i try and explain i cannot convey the seriousness of attacks, as soon as people hear headache they switch off and seem to think a paracetamol will do the job Nice one mate
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chewy

Ex Member

Re: Letter to Employers & Colleagues
Reply #33 - Jan 21^st, 2006 at 7:47am

Quote:

Sue!!...you cant be fired because of a disability

Its not always that cut and dry. Upon hire an amployer may legaly ask if you have any health conditions that may effect your job performance. How did you answer that question?

Do you have documentation of your condition on file with human resources?

How many employees does your company have.

An employer is required to act with due diligence but so is the employee.

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mt240sx CH.com Newbie Offline I love YaBB 1G - SP1! Posts: 3 x0\|Fredericksburg\|USA\|\|0\|0\|VA,Virginia	Re: Letter to Employers & Colleagues Reply #34 - Feb 7^th, 2006 at 9:28am Thank you for this link i sent it to my friend's, co-workers, and boss it has helped them to understand that it is not a migraine or tension headache like they have had in the past.
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dacluster CH.com Newbie Offline 800mg Ibuprophen? You gotta be kidding! Posts: 9 x0\|Nampa\|USA\|\|0\|0\|ID,Idaho Gender:	Re: Letter to Employers & Colleagues Reply #35 - Feb 14^th, 2006 at 10:39am I like this letter! It just about hits the nail on the thumb! As funny as this may sound, I have been shot before, and I would still rather be shot than experience another CH! I am not kidding. At least when you are in shock, you don't feel as much! If it would get rid of any an all future headaches, don't miss!
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dacluster CH.com Newbie Offline 800mg Ibuprophen? You gotta be kidding! Posts: 9 x0\|Nampa\|USA\|\|0\|0\|ID,Idaho Gender:	Re: Letter to Employers & Colleagues Reply #36 - Feb 14^th, 2006 at 10:49am Addendum: ...by shot again, I mean I would rather survive the incident so that I could relish the feeling of never experiencing the MONSTER again! I consider them a fair trade!
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Dragnlance CH.com Hall of Famer Offline Monster bait Posts: 1131 x1\|Great Falls\|USA\|usa\|147\|54\|MT,Montana Gender:	Re: Letter to Employers & Colleagues Reply #37 - Feb 14^th, 2006 at 10:51am Print this letter off and give it to those that need it. You will be surprised at how well it helps.
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Garys_Girl

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Making biscuits

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Planet Cat, NJ
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Re: Letter to Employers & Colleagues
Reply #38 - Apr 4^th, 2006 at 7:03pm

What a great letter! Our friends have begun to think we're using "migraines" (didn't know until a few days ago when I found this site that it was Cluster Headaches) as an excuse to break weekend dates. Gary started getting CH several times a day - always in the evening - at the beginning of March. We've had to cancel plans each weekend as his pain just keeps on rolling..... this letter should really help!

Thank you Simon!

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This is enough already

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Garys_Girl

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Making biscuits

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Re: Letter to Employers & Colleagues
Reply #39 - Apr 5^th, 2006 at 2:30pm

On second thought - I would change just one thing in the letter. At the end it mentions that CH sufferers may exhibit tiredness, irritability, etc. I would simply change "tiredness" to "exhaustion." Gary's had on average 2-3 hours of sleep per night, often with completely sleepless nights, and only a few naps here and there (which he could never do if we worked in an office 5 days a week) for over a month. He's not just tired, and he's not just "bone weary;" he's completely exhausted.

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This is enough already

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pingu1981 CH.com Newbie Offline The world was my oyster, but I used the wrong fork Posts: 8 x0\|Llanelli\|Wales\|\|0\|0\| Gender:	Re: Letter to Employers & Colleagues Reply #40 - Aug 4^th, 2006 at 6:52am Oh my word!!! That is SUCH a good letter!!! I've got a formal meeting coming up with my area manager where I know that CH is going to come up because they don't beleive I'm ill. I'm SO taking a copy with me!! Thanks alot!!! Michelle
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LeLimey Ex Member	Re: Letter to Employers & Colleagues Reply #41 - Aug 4^th, 2006 at 7:07am Michelle check your email! I've sent you some other stuff love Helen
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BMoneeTheMoneeMan CH.com Alumnus Offline In remembrance of KingCazman. RIP Posts: 2674 Portland, OR	Re: Letter to Employers & Colleagues Reply #42 - Aug 15^th, 2006 at 8:12pm I am not the most computer savvy person, but I would like to send someone this letter in an email. I havent been able to finger out how to save it as a PDF so that I can just attach it to an email and send it. Can someone tell me how I can do that? Thanks a lot. BMonee
Back to top	"Fool me once, shame on, shame on you. Fool - can't get fooled again"&&&&&&Think of how stupid the average person is, and then realize half the population is stupider than that.&&&& IP Logged

Jonny Ex Member	Re: Letter to Employers & Colleagues Reply #43 - Aug 15^th, 2006 at 8:30pm Right click "PDF Version" and then click "Save as target"
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BMoneeTheMoneeMan CH.com Alumnus Offline In remembrance of KingCazman. RIP Posts: 2674 Portland, OR	Re: Letter to Employers & Colleagues Reply #44 - Aug 15^th, 2006 at 9:32pm Thanks, Bro. email is out the door
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aubmari

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Do not lose heart~

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Re: Letter to Employers & Colleagues
Reply #45 - Aug 28^th, 2006 at 6:35pm

Tthat is a really great letter I wish that I had only know about this web site and had the letter when I had my last round of them ('03). My boss thought that I was one of those "Hypocondriac slackers" that just didn't feel like coming into work!!!!! It would have been nice to be able to have help convincing him that it really is severe. Thanks all for your info. Wink

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Life is too short for drama & petty things, so kiss slowly, laugh insanely, Love deeply and forgive quickly.&&&&

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psuet

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Re: Letter to Employers & Colleagues
Reply #46 - Oct 18^th, 2006 at 10:29pm

This letter is absolutely perfect. I have had the unfortunate opportunity to lose a good job from ch. I had doctors notes and everthing, but like it says if you've never had any, you can never understand. I am printing and copying this to give to my instructors, fiancee and especially my mother. She seems to think I am faking and I just need to come out of my room and do some yard work or something. Ha Ha Ha.....

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winshots

CH.com Junior

Re: Letter to Employers & Colleagues
Reply #47 - Oct 19^th, 2006 at 10:18am

Thank you for this letter, it says everything I'm trying to explain to everybody since I am no longer trying to hide my CH's to the rest of the world.
I would like to try to translate it into the Dutch language, if you permit.
(Maybe this has already been done? Tell me!)
Please inform me if you are OK with this and how to have the translation checked before publishing it (I prefer the PDF format).

Keep it up!

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... untill it sleeps ...&&

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Lawnmoman

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Re: Letter to Employers & Colleagues
Reply #48 - Jan 24^th, 2007 at 11:19pm

Hello all
I am new to the site and i dont feel so alone anymore."as corney as that sounds" Ive suffered for 26 years with the longest remission being a little over a year. Coincidentaly about six months after quitting smoking. Long enough i thought i was cured. I read the letter through tears. I think we all have felt somewhat like this before but I have never been able to speak so eloquently. I have forwarded this to close friends and family in hopes they might forgive anything i may have done in the past, present or future. THANKS!
CLUSTER FREE FOR FIVE HOURS AND COUNTING!

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MathenyMan

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Re: Letter to Employers & Colleagues
Reply #49 - Mar 2^nd, 2007 at 6:46am

Just to reiterate once again what you have all said, this was a great letter. I have, since reading it, posted it on my myspace for all to read. It's perfect(for myspace). Thats the one place where all the people I care about, reguardless of age, sex, or location can be contacted. Since I've posted it there, now I don't have to tell the weird story of my, "bad migraines" as most people like to call it, over and over again. I just annonced it in a bulletin and let people read it in their own time. The whole suicidal thing, eh. I wish I could deny it. But, you all know what a 10 on the Kip scale is like. What I should do is get some gloves to prevent more holes in the walls and/or broken knuckles. I'm not so big on head banging, I just get really frustrated. I always get the feeling if I hit my head hard enough during one I might die or something. While that wouldnt sound so bad most of the time, one, I'm a "girly man" if you will, two, I use loved ones to keep me calm. Meaning, if I lay down next to mom, I know I wont get to crazy, for her safety. Well...see ya. Thanks again Simon

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What does it feel like? Let me think...Have you ever had something try and eat its way out of your brain? Me either, but I'd imagine it feels something like a CH.

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