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Topic: Its evaluation time for me (Read 303 times) |
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wildhaus
CH.com Alumnus
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Its evaluation time for me
« on: Feb 22nd, 2006, 3:05pm » |
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HI…
Its evaluation time for me, after just about a year of “dancing with a beast”.
The pain I can handle… abort it with (by now) what looks like a chemical laboratory, including a tank of O² of 11.5 kg (25.35lb) as well as 4 portable tanks and re-breathable masks….. and god knows how many tablets, sprays, needles, and so on….
Oh and some of the “woodo” stuff…. I did fall for the Charlatans!! - How desperate one gets…
On the computer desktop numerous articles and charts….I call them pain flow,
The psychological effect for me, is not only the avoiding and denial, it’s the “shame feeling” of not being able to get the situation “under control”. The anxiety… the fear of the next attack – and what if the meds don’t work: that’s my stress (which is mainly self made) but still stress… and then what if the meds work slower, or not at all…. and the pain level increases… the “why me” syndrome …sleepless nights. I will avoid the truth, if I will say I didn’t - but at the beginning (not yet knowing its CH) I was at times intrigued to “turn the light off“ - and it could come again.… and then during (still in treatment) the torture of going trough the treatment of “Gloa” - my preventive - and I am an absolute needle phobic. Most of the time this is an effective treatment, which is not a pleasant alternative, but better “Gloa” then the pain you are all so familiar with, and still it is a psychological rollercoaster…. And that “little Indian” called shadow sneaking up on me with his little lance……how much coffee can one drink……. I start to dislike this dark brew, NO alcohol at all… and I have to give up my last “pleasure“: smoking… What’s left……..( I bet there will be a clown telling me Sex…..did see it on one of the boards ……and my answer - when I am hurting, that is the last on my mind)
Which way I take I am trapped!!!
I am going to work, at work almost all understand and the Company gave me the right, if its too much for me just to take a brake… or if needed to go home…No problem (and don’t get the “funny comments “ we all are so familiar with)… the letter for the employer/ friend (Tks E.Doubble for posting the link to "Simon's Letter" helped a lot to explain this phenomena called CH to most of my friends and colleges, well some didn’t get it… they think its all in my head…which it is, but not the way they see it…
And still, with all the understanding, the fear of getting “hit” at work, or for that matter, anywhere outside the safety of my home, the thought that people will see me in that agony is, I would say depressing and embarrassing, which adds to the stress… and my new “girl friend” O2 tank….”She” follows me all over…..
Is there a way out?
Some would say – “there is a cry baby!” – some would say “what is your problem?” And I will say –it’s not a cry it’s a statement, it’s not a problem it’s a fact!
The more experienced ones will say – “get used to it, live with it” and I will say NO – there has to be an answer there is a way….. It’s just that I didn’t find it…… (yet)
One answer I have though_
for the ones that initiated this “global Village” for me it is a refuge, a comfort and source of knowledge
and to the ones that shared their experience, know-how, and words of encouragement:
“incline thine ear unto wisdom, and apply thine heart to understanding;
3 Yea, if thou criest after knowledge, and liftest up thy voice for understanding; (Proverbs 2;2)”
In a situation that does not have an answer (for me) you are a start….. a very big start
and for that I am grateful to you all……
And to my loved ones – my wife and two boys, what would I have done and do without you………
Michael
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| « Last Edit: Feb 23rd, 2006, 5:02am by wildhaus » |
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marlinsfan
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Re: Its evaluation time for me
« Reply #1 on: Feb 22nd, 2006, 5:26pm » |
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Nice post, Michael. Thank you. I read it 3 times just to make sure I got it all.
You are lucky that your employer allows you to take time off, etc, when the beast visits. You are also lucky you have some good supporters at home (apart from us, of course).
If the caffeine works for you but you are getting tired of the taste, there are some alternatives: mountain dew, red bull, coca cola. Look around, I'm sure you can find something.
I'm with you, when I'm getting hit the last thing on my mind is sex! Why did you give up smoking? Did you find it was a trigger for you? I smoke cigars, and that is not one of my triggers, but like you, I hate smoking one without a beautiful glass of port wine to accompany it.
Hang in there, Michael. The cure is coming,and believe me, those of us here at ch.com will be the first to find out!
PF wishes, my friend.
Jose
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Jasmyn
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Each day will be a new trick in life's journey
 
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Re: Its evaluation time for me
« Reply #2 on: Feb 23rd, 2006, 6:03am » |
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Michael, you are spot on. We all, some or other time, go through this, taking stock of our lives with CH.
What you said is very much close to home for many of us.
Going through the excruciating pain constantly, sleep deprivation and the tons of meds and treatments takes its toll.
We all at one time or the other become desperate to try anything and everything, snake oils included, if it can just give us a glimpse of relief.
I sit here between somewhere and nowhere and although I try to keep a humoristic view on life, me, myself and I have stumbled various times, very close to the precipice of giving up.
This insert is a humoristic view but I have tried everything I joke about in here for real, that is how desperate a person become:
http://www.ouch-us.org/newsletters/12-2005/12-2005.pdf
Trial by Massive Error
CH has an intense psychological effect on CHers. We try very hard not to live with fear, we push it to the background, we try to convince ourselves we are stronger than it but... it sits there in the back, dark corners, glaring at us with the beasts flaming eyes.
We feel out of control when the CH becomes out of control. We lose who we are to this condition and then everything else around us spins out of control
We feel ashamed because we cannot seem to control our own lives, bodies and emotions anymore to the detriment effect of all those around us.
Pain, frustration and desperation are the modes we operate in.
We are all lucky, we use to cope with these feelings and thoughts alone, then DJ came along and now we know that we are not crazy, a bad person or psychotic.
We will never be alone with this again, this is the place where we are safe, where the people are, who understand and don't judge.
Encouraged by the support we can face each day a little bit better.
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Jazz
Madness is proclaimed by society’s inability to accept its own infallibility
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Bob_Johnson
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Re: Its evaluation time for me
« Reply #3 on: Feb 23rd, 2006, 6:49am » |
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As you recognize, much of your distress is emotional. It's a distinction which I define as pain vs. suffering. Pain is the body's reaction, suffering is an emotional response which we can experience even when there is no pain.
In the U.S., cognitive therapy has become recognized as the best researched form of emotional therapy presently available. It offers some good approaches to reducing the suffering (emotional) distress.
I have a little handout on how these techniques can be used for cluster folks but it's too long to be posted here (the system won't allow it). If you are willing to send me your e-mail address, I can send it to you. (You can use the "instant message" button just below my name on the left margin of this message.)
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Bob Johnson
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Dragnlance
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Re: Its evaluation time for me
« Reply #4 on: Feb 24th, 2006, 5:00pm » |
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Quote: We are all lucky, we use to cope with these feelings and thoughts alone, then DJ came along and now we know that we are not crazy, a bad person or psychotic.
We will never be alone with this again, this is the place where we are safe, where the people are, who understand and don't judge.
Encouraged by the support we can face each day a little bit better. |
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Here here!!!
Well said Jas!!
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