"Fighting" CFS

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artpainter
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Date Joined Feb 2006
Total Posts : 620
   Posted 7/7/2006 7:34 PM (GMT -7)   
:-)  hi, this is painter(artpainter44)with something i want to share. many of ypu probably know this anyway, but i just realized the truth of it in my life. i was in the hospital in 1979 about to be released after my 2nd bowel resection when i caught a virus which slowed my release by over a week. i didn't think about that again for years. by 1981, i noticed  that i was getting flu-like symptoms about every two months and they would last 2-4 days. it didn't take long for the symptoms to increase in frequency and severity;i could no longer play tennis, run, work out like i had been doing without becoming quite symptomatic, ill the next day;then it took only about an hour after exercise to get sick....my doctor had no idea what it was and tended to blow it off. fortunately i sought the help of an allergist who just happened to have a friend working in research with a new syndrome dubbed the "yuppie flu". luckily, this doctor agreed to see me in denver. this was 1990. after a full day of testing, ruling out everything else, i was told i had cfs. i started fighting it all over again. i had continued to exercise even though it made me so ill i had to spend two or three days in bed afterwards. not too bright, huh.
    i was looking at the titles of posts earlier today and noticed the words "fighting cfs", which made me realize something i think i'd known all along;I can't fight cfs..it wins every time, stacked deck.(i am still ...after 27 yrs. ...having to learn to live with it & listen to my body). live with it, don't waste my energy trying to "fight".
    i still have it, of course;my whole liife has changed because of it & the crohns& agoraphobia, etc.but i doubt i'd be painting as much ...& i know i wouldn't be here at hw  with you wonderful folks."not fighting" is not "giving up";just the opposite;it's going on with your life thought in a different way...just a change of course..a different path;i am not running things;none of us has control over anything but our own reactions& responses...& it's wonderful that we can choose how we want to respond. i am lucky. and grateful. thank you all. painter.

hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 7/8/2006 8:55 AM (GMT -7)   

Well said painter yeah .  It does seem like a fight - everyday is a fight to get out of bed and try to function.  I think it's important to figure out the the right amount of "fight" to give.  You are right that if you fight too hard, the cfs will win.  It's a huge balancing act and I'm still trying to learn how to listen to my body while still testing the waters a bit to see how much I can do each day.  Diseases like cfs are life changing and I'm in the process of figuring out who I am all over again and I'm working really hard to find things I enjoy that don't require a lot of physical exertion.

Thanks for posting this, it gives us all a lot to think about.  I hope you are as well as you can be.  I'm still struggling.  I've decided to turn my notice in at work next week.  I'm going to work until the end of August.  I know this is the right decision because I feel a real sense of peace about quitting.

Lots of hugs for you painter cool cool cool


Diagnosis:  Suspected Lupus 2004; Raynauds 2006; Sjogren's 2006; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 300mg; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/



artpainter
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Date Joined Feb 2006
Total Posts : 620
   Posted 7/8/2006 5:01 PM (GMT -7)   
cool   eyes eyes was going to post short reply but cannot resist emoticons!! i've never used the cool sunglasses;i like them! hi, hippi, i hope this is a good day for u. thank god...i was so glad to hear that you are quitting your job...but very sorry u have to. your health is first, though,...  thanks for kind remarks re:my post. later, i realialso realized that a lot of the fighting is a form of denial. you don't waant the disease so you try to keep your life like it was...until you finally really know u can't.
   i am in the process of just beginning to reinvent myself & i still have some anger that i have to...denying anger was something i was so good at;i am dealing with it in other ways now...first, by acknowledging it, then by doing something i'm up to;evev if it's going into the bathroom & screaming. so far the neighbors haven't called the cops, so i must not be too loud...or they think it's a catfight(we have 3).!! i prefer to put the energy into a painting if i can, tho...i can't always do that.
    as usual, this is too long. thanks so much, hippi. gosh i have missed you. i'm not in a very good cfs energy period..low, low, & some depression comes with it...it's more physical(paxil helps) than anything else...cfs change in brain chemistry. oh, well..it will pass. you take care of yourself, girl;wow, it was so good to hear from you. big hugs, painter :-)

hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 7/9/2006 6:07 AM (GMT -7)   
Yeah, this reinventing of one's self can be a real pain in the rear - I was pretty happy with the way things were before I got sick. I still go into denial every so often and tell myself that if I can just find the right frame of mind and just start making myself do things then I will feel better. Well, unfortunately I've tested this theory a few times and paid for it dearly with several days in bed.

Hang in there painter and take care
Diagnosis:  Suspected Lupus 2004; Raynauds 2006; Sjogren's 2006; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 300mg; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/



artpainter
Veteran Member


Date Joined Feb 2006
Total Posts : 620
   Posted 7/9/2006 9:37 AM (GMT -7)   
eyes   :-) hi, hippi;thanks.i'm feeling like a big truck hit me ;bad cfs day so far. you brightened it, dear. thak you. will write more when i feel better..hugs, painter tc u hang in too.
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