Victim or Victor?

I applaud your turn around.  Living with FM is not easy, but it is the hand we've been dealt.  I think at this point I live between your two ends of the FM spectrum.  I have two children...both toddlers...a husband, two dogs, a mortgage and bills up the whazoo.  I'm part of a typical American family.  I don't have a lot of choices right now.  I HAVE to work full time to pay for our lifestyle and there is no way to downsize because the real estate market wouldn't compensate for the mortgage and debts incurred on our house.  There are days I feel like your #1 - Good Lord, take me now...but there are days that I'm #2 - Nothing can stop me now.  Most days I live between the two - I live day to day, treat pain when I need to, rest if the kids let me (Not so much), share chores with my husband who compensates for me (plays mommy & daddy) when my FM moves into my lower back and upper leg and I can't lift.  I know - being a typically happy person - that attitude (and LOTS of faith) can help you through most obstacles.  The only thing I will tell you is that having a tiny little pity party for yourself now and then is ok.  Life is hard with Fibromyalgia, and acknowledging that is NOT taboo.  Accept it as part of your life now, be happy every minute you can be and throw yourself into a pillow and cry when you need to.  There is a happy medium between Victim and Victor.  Find yours and whether or not your FM improves, your mental state will.  Love to you fellow FM's!

good for you! Im a victor too. Sometimes its easier to give in to the pain but life is still worth living! Keep on fighting it!

You should be very proud of your accomplishments! A writer is something I am not very good at, but writing poetry since I became ill has opened a new door for me one TALENT I never new I had..lol

thank you for this concept about pain ,  I know it will help me push through those hard days when I cant raise my arms without the pain so I can accomplish more knowing I am not the victim of my pain.

I have a poem and photograph coming out in an online magazine, that's not what's relevant to this piece by Karen. It's the short bio, where I own my status and describe myself ans a chronic pain survivor.  I had pondered a word there, in the bio, sufferer? victim? afflicted? All left a bitter taste, survivor, that's what I wanted to claim myself to be! Lol, even though I was laid up at that precise moment, recovering from a little fishing excursion  that as it turns out, was a bit much for me and I became heat exhausted.

I was trying to be philosophical, even in the moment, sitting there with a wet towel on my head, completely nasueous, dizzy, while my husband hurridly loaded us up to go. This, I thought, is the reality, calling for more judious planning. While the other me, the whiny me, was in the background, No fair! The healtheir girl who loves the outdoors, heat and all, the girl who loves to fish, the girl I no longer am.

  There is a mind set, a chosen one I hold onto like a drowning sailor. Be calm, work around the obstacles as they present. Then just live. I tend to be occasionally overwhelmed by my pain and sleeplessness, so it's almost a mantra for me, it helps.

Karen, I do enjoy your pieces, you grasp and convey so well the everyday challenges, and your research is tireless on our behalf. Do know how much it is valued and appreciated.

Like many Fibro people, I find myself relating to both.  I especially take heart when I hear others describe their symptoms.  Sometimes I think I am absolutely crazy in the head, until I realize others have similar challenges with pain and chronic fatigue.  I recently requested more tests.  My doctor told me I would probably live to be 100.  Please no!  I, too, have resorted to qualifying my time.  In doing so, I have become an accomplished painter.....something that could not have happened had I been busy running marathon's and such.  I also have the gift of six grandchildren.  They sometimes ask too much of me, but seem to have a sixth sense when Grammy has had enough.  So, yes I have been blessed.  Even so, I wouldn't wish fibromyalgia on my worst enemy! 

FM & I have grown up together, our relationship began at age 13 and still going strong at 43. About 5 yrs ago fibromyalgia blasted me off my feet & out of my career. Changes had to be made for survival, one change was leaving our families in the north to live in the south.

Prior to moving south, I built an outstanding team of doctors, specialist and therapist. We were all on the same page; preventive & proactive. It took me years to make this happen. I was my own advocate and I took full responsibility for my health care.

Now in Central Florida, it is 1980's & 90's all over again.

Fibromyalgia isn't recognized or accepted as an illness in my area; therefore, this dibilitating Fibromyalgia isn't medically treated, properly. I'm not treated properly. I'm not a victim....I am tired! I am sick and I AM tired!!

Finally, 2 years of searching for a doctor I was referred to U.S.F Tampa Medical Group. However, they refused me as a patient because, I don't have insurance.They treat fibromyalgia but, not the uninsured.

A very sad and sobering fact, No health insurance = NO health care.

Now what?

Karen I am new to your articles so I don't know if you live with pain? I have been in pain

since 2003. I guess it's not that long some have had to live longer. I feels like it's a life

time for me. I take a cocktail of opiates to try to take away my pain. I have nerve pain

in my sacroiliac joints, down legs to neuropathay in both feet. I have implanted scs since

2004. I have not sleep a full night since 2006, it's 2 or 3 hours at a time. I start to get

real edgier after a will. Maybe I'm still a victim I get up and go as long as I can endure

the pain then it's home to bed. When pills and scs do not cut pain and can not mentally

endure the pain. This thing about victim or victor what is when it takes all of our

mental capacity just to get out of bed. Are we a victim when our medication runs out

at midnight and there is no more until eight in morning. I lay here feet hurting so bad

you can not lay them on the bed. again I ask victim or victor?

I suppose I feel like a victim most of the time since being really ill with this for the last 6 years.  I am 45.  It has aged me tremendously and changed me drastically.  It seems all my plans center around rest periods.  The constant question in the back of my mind is always "when can I rest again"?  I crave rest like a drug addict craves a drug.  The problem is, I pay for sleep.  A night of what I believe is good sleep finds me waking up to the worst stiffness and pain for the first hour or so out of bed.  I don't even want to see anyone for the first couple hours after I am up.  The pain is with me all the time to some extent.  But mornigs are sure to be hell everyday. 

I am frustrated by the lack of belief and the questioning.  Ok... now was NOT fibromyalgia around LONG before any drug companies ever created meds for it?  Then why the accusations of the drug companies creating an illness to make meds for?  Makes no sense.  How many poor souls of the past have suffered their entire lives being called hypochondriacs?  Very sad.  No, you cannot see pain.  Especially chronic pain because we have learned to LIVE with it.  Otherwise, we would not LIVE at all.  You smile, you walk, you talk, you do things that you need to do to function.  But just because we are not crying all the time, people think we cannot possibly feel as if we are dying.

Does anyone fault a cancer patient for having a smile?  Do they doubt the pain?  NO...only becuase you can SEE cancer on some test.  Well, fibromyalgia can lead and progress to pain equal to that of cancer...yet we don't die from it and there is no removal method such as removal of a tumor.  No removal.  No death until natural causes or another disease.  So therefore many live each day with this curse feeling as if they are dying.  But the only other choice is to give up. 

So in this way I suppose I am a victor.  I have not given up. I do what I can.  I smile and talk and walk all the while feeling as if screws are in my muscles pulling them tighter and tighter.  All the while I am feeling as if someone literally took a baseball bat and beat me.  All the while that the dark circles under my eyes are the only revelation to others that I don't feel rested.  NEVER.  NO matter how much I sleep.  Literally.  I do not have the luxury of sympathy and very little empathy save for the people I find on the internet who are exactly like me. 

Guess what?  This disease is SOOO real.  I am a RN of 17 years and had never heard of it until I got very ill with the curse. 

When, When, When will anyone learn that pain can be real though we are not grimacing and crying in bed all day?  Pain is not seen.  Only our reactions to pain.  I personally don't want to spend my entire life grimacing and crying.

Debra RN

After I got sick in 1999 I struggled with the pain and stiffness that came with the multiple forms of arthritis and the neuropathy that I was diagnosed with. I tried to keep my business as a Gardener going but it became very dificult and after three years I finally gave up and applied for disability on the advice of the five doctors I was seeing. I took the attitude that I just could not do anything.

It was not until last year that I started coming out of my shell. My Doctor sent me to physical therapy and it turned out to be the best thing to happen to me. It was really hard at first but after about six weeks I started noticing that my pain was much less and that my flexabilty was better. I started going to church again after being absent for 5 years and started doing volenteer work for the church and helping where ever I could. It also opened up my social life. I came out of my shell and started enjoying the company of others.

It took me nine years to come to the realization that I needed something more in my life and to do something about it. I am still very limited in what I can do but I am much happier and now have friends again.

Good for you Karen, but not everyone has had the talent or support that you have enjoyed through your health journey. 

I was healthy and happy until cancer entered the picture.  I'm in remission; however, the list of diseases, disorders and syndromes that I have developed has gotten longer and longer since the completion of intense chemotherapy and steroid treatments.  I am in unrelenting pain. 

These are simply the facts.  I lived, but now I just exist.  Labeling each other "victim" or "victor" does nothing to alleviate the pain and suffering.  In fact, I believe that it only causes more distress in those of us who are hanging on by a thread.

I wish us all less pain and more joy.

For most of us, chronic pain is but one part of our medical equations. One of the most depressing aspects of a long-term illness has to be the need to request accommodations from others in order to physically accomplish things we want to do - either at work, at home, or in our community. Four years ago, I was a lot more active despite my medical problems.

Currently I head a committee at my church, produce flyers for various community outreach groups, manage our website, and edit the monthly newsletter. I used to do a lot more but just can't regularly get to (and sit through) three-hour meetings of various committees.

I'm a retired 60 year old insulin-dependent diabetic with kidney failure, a large ventral abdominal hernia, arthritis, a paralyzed vocal cord, and heart disease who has undergone 10+ operations due a botched hysterectomy as well as breast cancer. Though my knees should have been replaced four years ago, I'm considered too great a medical risk for more surgery.

Individually, my physical maladies aren't terribly devastating but taken together - especially with limited mobility - they can seem overwhelming at times.

How does chronic pain effect ur relationships? Do u think the people that luv u get tired of u being ill?Peaceful days