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        New Message Board Archives >> Jul-Sep 2003 >> Question about daily living...
        
(Message started by: TraceaTX on Jul 10^th, 2003, 9:44am)

Title: Question about daily living...
Post by TraceaTX on Jul 10^th, 2003, 9:44am

How does everyone cope during their daily lives? I am really having trouble coping at work (which is why I am now on short-term disability) and off work.

Before anyone asks, yes, I have tried all preventative & abortive meds. My CH's are chronic and I have them throughout the day (starting at 0400hrs every morning and the last one usually at midnight). I am currently on Imitrex, O2, Indocin, Effexor, Seroquil and Cafergot with little help. (Imitrex and O2 help the most).

I really need to get back to work but the last time I was in the office 3 hours into my shift I got hit with a doozy of a h/a and had to go home.

Is it possible to get disability for CH? I really don't want to go that route but I am at my wits end as to how to get this damn cycle to stop (I have been in the hospital 3 times for DHE - this last time in June didn't help at all).

How do you all deal with this beast?

Thanks

Tracea

Title: Re: Question about daily living...
Post by ozzman on Jul 10^th, 2003, 10:01am

Tracea,

Not a chronic, but may be somewhat relevant. While in cycle y remind my boss of my "condition" give him some literature on it and I let everyone know that I'm in cycle. Since the attacks when treated with Trex don't last more than 20 min, I usually sneak out for the time they last. If need be I make up the time at the end of the day.

As a rule, try not to let CHs mess with my life. Didn't stop me from going out New Ýear's Eve (got hit 30 min, before midnight). I go to work, family functions, play hockey. When I get hit, I just walk away. Most people that know me understand, the ones that don't want to understand....F@#$ 'em. Who needs those not a very nice persons anyway!

My only question is, I'm not sure if that med combo is too much, something wrong with it? I don't know. Seems an awful lot.

Wishing you much patience and strength.

Ozzy

Title: Re: Question about daily living...
Post by NotH20 on Jul 10^th, 2003, 10:09am

Tracea,

I totally agree with the Ozzman......I too continue to live my daily life when in cycle. I don't know chronic's do it - day in and day out...my heart goes out to all chronics. :'(

When I get hit at work, I just close my office door and hit the floor with either my O2 or my Imitrex and wait it out. Luckily for me the Imitrex has never failed me :)

Sorry that the DHE treatment didn't work for you - have you thought about a Prednisone holiday recently? Sure sounds like you could use that.

I continue to do my daily routine and just pick up where I left off when I have a ch. You cannot allow this beast to win and to rob you of your life. It's difficult - we all know that...and when times really get bad, we are all here to lend a helping hand and ear.

Keep the faith - there IS a light at the end of the tunnel.

Mia

Title: Re: Question about daily living...
Post by don on Jul 10^th, 2003, 10:19am

I totally agree with the prednisone option.

At the very least it will provide you with some rest and time to re- energize.

Title: Re: Question about daily living...
Post by Ted on Jul 10^th, 2003, 10:38am

I think one issue we chronics face that's a little different from episodics is that if we go to our bosses and tell them we can't finish that off by saying "just bear with me for the next two months (three months, etc...)" Or hope to get through a certain period hiding and then knowing we're in the clear.
Trace, have you tried the alternative method talked about here? I know you said you've tried everything but that one has a good success rate, in case you haven't tried it. Also, what about med cocktails? Right now, and to give credit where credit is due, thanks to jonny for posting many times how well it's worked for him, I am on verap and lithium. I was on "everything" before this too, including other cocktails. Right now I'm down to 1-3 attacks per day (sometimes more sometimes less, including some times of 2 days PF).
Some people have gone on disability for CH but if you can avoid it I would. I've been unemployed from this too and lived off my savings and by defering bills for a LONG time. But then you start getting in a rut and still get the same number of attacks. Like the others said, try to live your life and don't let it be stolen from you.

Title: Re: Question about daily living...
Post by hdbngr on Jul 10^th, 2003, 2:08pm

As a chronic, it can be very hard to do the day to day things in life, like work. Getting hit in a grocery store with a basket full of stuff is an all time low. One of my lows was getting "let go" because my condition made them "nervous". They thought I was a liability to have around.

Now, I don't tell anyone at work what is wrong. The fastest way to become unemployed is to tell them you can't work because of a headache. Let them assume what they will, but I don't volunteer anything. Efforts to "Educate" employers and co-workers can backfire.

When you are chronic, it is difficult for people to discern anything is wrong, because that is how we look and act ALL the time. Little scary, very pale, runny eye and nose, lots of weight loss (or gain, if you take prednisone) frequent side trip behing closed doors. Most people will assume you have allergies, unless you tell them otherwise. Get out of sight, FAST. It has been mentioned that you can get portable tanks of O2, and bring them into work in a decorative back pack. Go the bathroom and breathe deeply, or a supply closet if you don't have an office. Occasionally, someone will still see you in the midst of an attack. Damage control time.

Hang in there, try a new med, and hope for remission. In the meantime, PFDAN's

Vanasa

Title: Re: Question about daily living...
Post by don on Jul 10^th, 2003, 10:06pm

I am my ussual miserable honery self either in or out of cycle.

Only differance is I may kill you while in cyle.

Title: Re: Question about daily living...
Post by TraceaTX on Jul 10^th, 2003, 10:39pm

I have to agree with you Don..,. same here.

Tra

Title: Re: Question about daily living...
Post by paul_b on Jul 11^th, 2003, 12:28am

Be honery but be positive. You have control over how you feel, think, and act reguarding this affliction. Keep searching for the right med cocktail for you and inform those important to you that you are working at mastering living with this BEAST. Sometimes the anxiety of having an attack in a public setting limits our choices. Look at the post about card carrying CHers. Might give you an options you have not considered. We're with you in your search.