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Topic: Chronicism...... (Read 664 times) |
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BarbaraD
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Chronicism......
« on: Feb 17th, 2006, 8:38am » |
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There's been so many questions about going chronic lately that I thought I'd post something about chronics from the standpoint on one chronic sufferer....
First of all, a chronic CHer is one who doesn't have a let up of over 30 days at one time during a year period. For most of us that means a daily headache (at least the ones I know).
We have "high" cycles (the ones where we get slammed with Kip 8-10's several times a day) and "low" periods (the ones where we shadow 3-5 daily), but most of us KNOW we still have the demon with us on a daily basis.
For the first few years I was chronic, the CH ruled my life. I could think of nothing else. I dwelled on it, worried when the next one would hit, didn't get out of the house and was totally depressed most of the time. Not a good state to be in.
Finally one day I found a drug that helped (Topamax) and my pain got down to "managable" and I had a long talk with myself and decided that I wasn't old enough to give up and live life as a hermit, so I came to an understanding with myself - I have CH and they ain't goin' away, so I have a choice- I can stay in the house and be miserable or I could begin to have a life again. I chose to have a life.
Now, I don't dwell on the headaches. I go to work, I keep my grandson, I do things I want to do and I lead a fairly normal life. I have headaches and I don't apologize for them. When I get hit, I get hit. I do my O2, drink black coffee or take my meds (depends on how bad the headache is). If anyone is around when I get hit I just tell them I have CH and don't get near me or I'll hurt them and when the HA subsides, I go on about my business. If they want an explanation, I give them one, if not I don't.
For those of you who are new to CH - acceptance is not someting that will come overnight - it takes a while, but when it does come, you'll be a lot happier and begin to LIVE again. At least I did. My family still doesn't have a clue about CH and probably never will. That I've had to accept also. Mom has her headaches - that's about all they know. A hangnail is enough to put them down, but Mom is supposed to keep going regardless.
This is just one prospective on chronics. What I'm trying to say, worrying won't change a thing. If you go chronic, you do and there's not a thing you can do about it. Spending your time worrying about whether you are or not is just a waste of time. Learn to cope. Your attitude about it is your biggest asset. You chose to be miserable or make a life. The choice is yours.
Hugs BD
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sandie99
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Re: Chronicism......
« Reply #1 on: Feb 17th, 2006, 10:38am » |
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Great post, Barbara! 
As a chronic, my best med has been positive attitude.
Sure, it was verpamil, which sent my ch to remission and maxalt rabitab, which killed the hits...  but optimistic attitude helps when depression hits and closeones don't get it.
Sanna
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"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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Dragnlance
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Re: Chronicism......
« Reply #2 on: Feb 17th, 2006, 10:39am » |
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Thanks for posting this Barb!
I too, am chronic, and have been all my life. Quite honestly, I don't know anything different, so dont really understand what it would be like to go for years without the pain in my head.
I actually think that being chronic is by far better than episodic. Like Barb, I go about my days, go to work, and often work even when dealing with a K8. (I usually go home when it gets worse than that, as I cannot help people when I am hurting that bad)
I will go about my life, and generally am happy. I dont seem to have issues with depression, which is good, but I do get quite frustrated when I cannot do things because the monster decided to rip my brains out.
I usually have k5 and k6 pains a couple times a day, many days k3 or k4 all day long. Normally my hits last 3 hours. I also get the cycles where I seem to get k9s at least once a day, which normally start in March. This year they got an early start, by getting worse in January.
I have been drug free for several years, until last week when I started on the Kudzu. In the little over weeks time, I have found the duration of my hits to be less, as well as a major decrease in the pain levels. I had several hits that should have escalated past k8 this week, but didnt go beyond k6. My daily ones have been this week around k3. This is awesome!
During hits, I will stand in a scalding hot shower, as well as slam a Red Bull. This has helped, but not a cure. Just gets me by.
Quote:| Your attitude about it is your biggest asset. You chose to be miserable or make a life. The choice is yours. |
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Barb is correct however. Some days are very difficult to be that way, but I want a life, so I just find some way to just "deal with it". There are times with the hits are so bad that it isnt possible to do the daily things, and we all understand that. Just wanted to state what I do, as maybe it may help someone.
Pain free time for everyone!!
Dragn
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chewy
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Quote:| Learn to cope. Your attitude about it is your biggest asset. You chose to be miserable or make a life. The choice is yours. |
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Wise words for both chronics and episodics.
Chronicism: Is that a word or did you make that up?
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Dragnlance
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Re: Chronicism......
« Reply #4 on: Feb 17th, 2006, 3:06pm » |
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Quote:| Chronicism: Is that a word or did you make that up? |
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It comes up if you Google it, which surprised me
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| « Last Edit: Feb 17th, 2006, 3:07pm by Dragnlance » |
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BarbaraD
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Re: Chronicism......
« Reply #5 on: Feb 18th, 2006, 9:07am » |
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Yep, it was "original" -- I made it up -- didn't know it was actually a word -- gotta read the damn dictionary more often.... 
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Jonny
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Re: Chronicism......
« Reply #6 on: Feb 18th, 2006, 2:41pm » |
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May I add a bit of hope?
Ive been dealing with CH for more than 31 years, the first 30 years were chronic (Yep, right out of the gate chronic) and I thought the hell would never end. Well, over a year ago it stopped, just fucking stopped like someone flipped a switch. I have no idea why and im not sure I want to know why. I just know that I live with a fear that I never had before, the fear it will come back, always looking over my shoulder for the beast. That was the one and only thing good about being chronic.....never fearing the beast cause you knew he would never be late for a date. To me episodics have it worse with that fear!
Never give up, never give in.....always fight, it could be your switch that is flipped next!!
The people here that know me personally know that I would give up half my PF time just so folks here would suffer less.
PF to all my peeps....FIGHT!! 
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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Chillrmn1
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on Feb 18th, 2006, 2:41pm, Jonny wrote:| To me episodics have it worse with that fear! |
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My take as an episodic: Sure I feel fear when out of cycle as to when the next cycle will start, but as an episodic I know the cycle will eventually end and that's what helps keep me going.
My biggest fear is that someday I may go chronic. The strength a chronic sufferer must have to deal with this day in and day out is beyond my comprehension.
BD - Your post on how you approach and deal with your chronicism is the best I've ever read and that's the type of strength I was referring to.
PF Wishes To All And May A Cure Be Discovered Soon!
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Kevin_M
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Re: Chronicism......
« Reply #8 on: Feb 18th, 2006, 6:50pm » |
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Thoughtful and a good post too, Barbara. Sometimes chronicism can become a new experience to previously episodic sufferers and accepting the change is one thing but learning to live without the let up that used to occur can be different to deal with over the following period of time.
Subsiding of peak times will level out to allow lowered preventative use but then, as a previous episodic, it can be ingrained as an expectation that the cycle may be soon departing. Instead, another increase of a more intensive time reoccurs. That can be the tough part for the first few times it happens and experience lends a hand for the support to again learn the new mindbending. It took time to adjust to being episodic for a while I remember, changing to chronic can too.
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| « Last Edit: Feb 18th, 2006, 9:09pm by Kevin_M » |
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kcopelin
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Re: Chronicism......
« Reply #9 on: Feb 20th, 2006, 4:50pm » |
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It looks like I'm going chronic after 24 years episodic-this is month 11, week 2. Daily hits, except those three days with a high fever. When I was episodic, there could be 2 years between cycles. Long enough to forget how painful. Long enough to believe they were gone forever. Long enough to hope. Each cycle I spent at least the first week in denial..it can't be happening again, NONNONONO! Now, well, hell, I just deal with it. I'm not working outside the house yet-still not that strong. But I'm living, raising my son, praising God for every pain free minute. Maybe chronic is easier, maybe not. But Jonny, dude, that you would be willing to take on the pain for others is, well, incredibly compassionate.
Thank you for every single one of y'all who stick around even when you're out of cycle! Y'all are special. And I really mean that.
PFDAN
kathy
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lashultz
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Re: Chronicism......
« Reply #10 on: Feb 20th, 2006, 7:30pm » |
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I know that I have not posted often, but I read the board a lot. I also am chronic and have been for 4+ years. Am on vrepamil. zomig, imitrex injections, kudzu, and ritalin, plus oxygen. It is similar,for me anyways, as eposodic.What I mean by this is that I get a headache almost everyday, but at different times of the year they get worse. This happens for me in the hot and humid times in the summer. Then they can really take off. I can go through a tank of oxygen easily in a bad night. Plus take mare imitrex than I should. Then I try and get predisone from my doctor. It does break the cycle, but the doc. doesn't really give me a whole lot of them.
lashultz
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Dragnlance
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Re: Chronicism......
« Reply #11 on: Feb 20th, 2006, 9:24pm » |
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Quote:May I add a bit of hope?
Ive been dealing with CH for more than 31 years, the first 30 years were chronic (Yep, right out of the gate chronic) and I thought the hell would never end. Well, over a year ago it stopped, just fucking stopped like someone flipped a switch. I have no idea why and im not sure I want to know why. I just know that I live with a fear that I never had before, the fear it will come back, always looking over my shoulder for the beast. That was the one and only thing good about being chronic.....never fearing the beast cause you knew he would never be late for a date. To me episodics have it worse with that fear! |
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Jonny, as a lifetime chronic, you offer the first real hope that I have ever had concerning this monster. Thank you.
I also agree with you that the fear of the monster... I just dont know how episodics live with it. On the very few times I have had 2 days pain free, I can hardly enjoy it because I know the monster will come back with a vengence for enjoying that time without it in my head.
The biggest lesson I have learned here is that no matter how bad I think things are for me, someone has it worse.
All you with 2 or more years of pain free time, and then the monster comes back, have my admiration, and prayers. How you can deal with that....
At least as a chronic, having a headache all the time, I dont have to deal with such radical change.
Ugg!
Lance
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