Do others "maintain the rage"

Discussion in 'Fibromyalgia Main Forum' started by tennisnut, Mar 4, 2009.

  1. tennisnut

    tennisnut New Member

    When a close family member commented that I had finally accepted my lot in life (this DD). I thought "well - that's bollocks, can't you see I'm mad as hell". Just because I've stopped whining (after 5 years) - that doesn't mean I've given up. In fact, I will never give up hoping and trying for wellness.

    Are others still raging against their shrunken little lives?
    [This Message was Edited on 03/05/2009]
  2. TeaBisqit

    TeaBisqit Member

    I even had one idiot doctor tell me that I "seem to have alot of anger toward my illness." Duh. Who wouldn't? This thing has taken away everything in my life. I can't work. I can't socialize. I can't do much of anything. I have no life from it. And no money from it. Who wouldn't be angry? It's destroyed family and friend relationships. The list of all the things I've lost from this disease would fill a book. So, yeah, after eighteen years, I am mad as hell. But I don't know how to fight something that I can't see and can't get rid of. Most days, I'm too sick to move. What little energy I get, I have to use on daily living. And it is so hard. The rest of the time, I have to rest. But yes, I am angry and I always will be. I want my life back and I can't have it.
  3. nixon

    nixon New Member

    Especially during flares, and when people make STUPID comments about our conditions. Until you have lived this hell......I don't think most people will ever have a clue.

    The Cymbalta commercials piss me off too.....they should use REAL sufferers for the commercials!

    I'm angry about ALL of the $$$ spent, and yet....not much relief.
    You are not alone with those feelings!
  4. AuntTammie

    AuntTammie New Member

    I am angry, although I seem to alternate between angry and sad....TeaBisqit I can totally relate to all you wrote except that I haven't had this as long as you....tennisnut - "shrunken little lives" is it exactly...and nixon, what you said about others not getting it is so true

    my anger tends to be more towards the people who don't get it and the stupid comments they make and towards the financial implications of this illness....the losses and isolation, just general lack of a life all make me more sad than mad

    anger can be good, in that it can be energizing, and when it has that effect and when I have a healthy way to fight back I take advantage of it.... for exp, I wrote a letter to readers digest - see the thread about the joke.....and I am planning to get pamphlets from the CFDIS association and see if I can distribute them different places for CFS day.......when my anger generates enough energy for me to do things like this, I appreciate it, but when I am just too tired, even with the anger, then it stinks, bc it makes me feel more hopeless and helpless
  5. " Bitterness is like cancer. It eats upon the host. But anger is like fire. It burns it all clean."

    Maya Angelou

    I like this quote...I hope to understand it someday, and (GOD WILLING).... live this quote..

    I realize reading it, though, that there is no such thing as 'chonically angry' so, I guess ..... I am *bitter*.... actually, I've known that.. I don't like it... but, feel helpless to change it... It's just the way I've been, probably starting long before my actual physical brain was developmentally capable of knowing, that was what 'it'.. 'felt'.. but, I've been *bitter* for at least, 21 yrs... I turned 31 in January.

    I've been disabled since August 2000. (I was 22. Newly married, 4 months..)

    So, yes, anger certainly has a place in healing..

    Like an above poster, though, I've long told doctors/therapists, that I truly felt I only had two emotions left within me, at ALL... and they were anger, and sadness- sadness and anger.. then those felt so repetitive, they had no impact on these doctors, counselors affect, reaction, 'treatment' (nothing, but recommend anti-depressants, & therapy)..

    So, it turned to " RAGE, and deep, deep, never-ending, bottomless pit GRIEVING".... same recommendations..

    But, then I was on steroids... A LOT OF THEM... and at a HIGH dose... I told my primary physician, my pain clinic dr/NP, counselors... that, "I" (whoever "I" was, anymore) was AFRAID that *I* would truly snap on someone, that I had been lashing out at any, and everyone within shouting distance- I flat out told my primary doctor once... "I am actually WANTING someone to just f*** STARE at me with my cane..."

    (I WAS LOSING IT! I scared my next door neighbor to death, tearing him a new one- poor guy... valid reason- very very over-reaction by me.)

    Nothing, nothing, nothing happened. except, my primary doctor seemed to be the ONLY ONE who truly actually understood, that anti-convulsants either put me in a coma, or, left me with permanent side effects, caused me seizure-like twitching & jerking, and, irony of all ironies-- any that did NOT put me in coma-like states (lexapro, remeron were bad!) Any that I *was* awake on, I literally laid around and just THOUGHT OF DEATH, 24/7...

    (that would be that whole "suicide ideation" side effect warning on ALL anti-depressants- just in case any clueless moronic doctors are reading - :-D

    So, to answer your question NOW, lol....

    yes. Absolutely. I rage.

    So much, that I begin to start wondering if my head will truly just explode if I here the *WRONG thing* at the *wrong time*... (those stupid "I can help you, my friend gets massage for a stiff neck, and blah blah blah blah "swears on her life" ) stiff neck- yea, has........ WHAT to do with my million diff health problems..??

    I AM glad that I no longer go on steroid tapers, (need them, won't do em'.) And, I still always dread starting a new med (anti-convulsants).. due to the bulk of those new ones, have also the side effect of "aggression"/ "personality changes" / "aggressive behavior"

    Some of them say, 'particularly in children under age _ but, HA! No.. don't think so... Topamax, didn't even effect me, for many many months... 300mgs.

    My cousin, has a severe, uncontrollable seizure disorder, they treated him for parkinson's for five years, along with the seizures, (he took 800mgs topamax, but a basketload of other drugs too, of course)..

    I'm pretty sure his head spun an entire 360* more than just a *couple times* on it.

    When I'm not raging, and not crying like I've just lost my whole world.... I'm just.. flat.

    I'm backing off as many medications as I can, just for that reason... I've been on clonazepam over 7 yrs now, no one ever checks it, changes it, etc... and I'm hoping* that, IF I can reduce the dosage, I won't have such a flat affect... I have ALWAYS been THEE joker of any/all crowds, that I "hang" with...

    now, I see friends I haven't even talked to in YEARS, (my BEST FRIEND- who lives in Co. now, from age 14-22), log onto messenger... and I can't MAKE myself appear 'visible'... not even to my MS friends.

    I always say I'm just toooo tired, or just in toooo much pain to talk- but - yrs ago, I sat on chat pretty much day & night, with friends..

    I just have anxiety/panic/grief attacks.. (rage supressed,)

    or, I've told myself, I'd rather go back to being NUMB (I've lived most of my life that way- blank, no affect, numb- if I just don't do/think *anything*.. I don't FEEL anything)\

    That, I've just shared- is as big a hurdle, as all the illnesses/diagnosis I have. Fighting the *mental* aspect... which never even existed... for a few years of my illness (had *hope*)..

    BUT- my physical illness, will not kill my husband.. but, how I am/have been, will... and does change who HE is as a person.... and I love him more than life itself..

    ((((hugs)))) I know this is long-winded.. but, we understand the anger/rage. It's also anger at the 'loss of control' as *ONE* slightly helpful counselor yrs ago, helped ME identify, when I told her I was just *always* full of rage and couldn't stand it, & didn't know why- it's grieving- it's anger- because illness has no face, it's not a physical being you can confront face to face, & just tear it a new A-hole... face to face... or even just beat the sh** out of it.

    So, it's normal, but, it sucks, and I guess again- we have to learn balance... embrace & allow "ANGER"... but, fight very hard, to avoid "bitterness".

  6. shari1677

    shari1677 New Member

    "Are others still raging against their shrunken little lives?"

    Everytime my 14-year-old daughter asks me to go on a field trip with her class and I have to say NO.

    Everytime I babysit my neice and can't play games because I'm too tired.

    Everytime I wish I could go to my friends houses.

    Everytime I look outside at the nice weather and just can't move.

    Yes - I'm still raging!

    LISALOO New Member

    Had a discussion w/ my hubby tonight.

    I have issues with acceptance too, because I don't want to accept that I will probably be ill forever, and continually get worse. If I accept I will be sick, I accept that I will never be able to have kids. Can't.

    I've never had denial or bargaining, a lot of anger, I think we're all different.

    I get so angry that I was 26 when I got this and i will never have kids.
  8. and want to add... a statement/question I told my old therapist, who was a BSN (Bachelor of Science, in Nursing,) degree, along with another degree or two...

    (She lost her father to Guillane-Barre Syndrome (SP?), after I read further on GBS.... I was a little shocked... what I read sounded so... much less ....?? terminal for most, if not ALL patients... I don't know *when* she lost him.. so, don't know how 'good' the medical info/treatments were then. I know he wasted away, year after year, was in a wheelchair with hand controls...

    Anyways.... ACCEPTANCE... we talked about the '5 stages of grief' and, again, I'd told her, I seem to rapid cycle them... but, really stay in anger & grief more than anything... Yes I too went thru bargaining, really, until about 2005-06...

    after the 6 months of IV Glutathione/weekly B12 shots, & omega 3's, etc that a "top notch" florida neuro put me on, along with a lot of vitamins, my doc here having previously done chelation therapy, 3mos of abx & anti-virals, before sending me to FLA to this 'top notch' neuro (drs words.)...

    Anyhow, I told this therapist ( I really cared for her, but, in all honestly- she seemed to ..... I don't know... actually be TOO EMPATHETIC... towards me? She almost *hindered* my fight- wanting* me in a w/c with hand controls (I was with a cane, had a chair, but, used a quad cane 99% of the time.. but, fell a lot)... She wanted handicapped railing along my kitchen, all in the bathroom, special chairs, etc... (EEK!)..

    Anyhow, I told her MAYBE- just MAYBE- I, and others like me, COULD reach FINAL acceptance... if our illness(es), did not seemingly change, constantly.. for me, the diagnosis' continue to pour in, WHEN I go to a doc, now I don't even seek treatment for a lot of things I DO have. I just had to STOP THE MADNESS, seeing SIX doctors, (primary, integrative medicine, four specialists) intermittent physical therapy every year- til the insurance coverage would 'max' out... and ocasionally, the *specialists* sending me to ? even specialer specialists?? (lol)

    But, does anyone else agree with *that* as well, that, you can't accept something, that does not stop pulling cheap shots at ya...

    To me, its like telling some firefighters to "just accept" a raging fire, because, each time things started to seemingly start to get under control.... it would fire up again, in a different area. They might accept, ok, so, a room burned down, but we stopped it from spreading- Different story though, if they were fighting all night, to get that 'fire' out and it just continued to 'flare' up again, or start in other places.

    I truly HAVE been there, early on in my illness... before so much other stuff happened... and some diseases I've been diagnosed with ( at least 3 of them incurable,& progressive, and one also rare, and will require medication AND surgical intervention(s) for LIFE...and I've been told by my neuro, three neurosurgeons, and the radiation oncologist, that due to the first procedure I'd had, having been invasive, and then having had that neurosurgeon screw it up, BEFORE anyone had tried the non-invasive radiation treatment I had twice after- changed the disease, and also has made it harder to treat. It continues to get harder, with each surgical treatment, and they are limited in what they can do- accept that??

    Like the above poster also, I get angry because I got it at 22, and, also, will never have children, with endometriosis, & other gyn issues too, if all else just went away one day, I would still probably not conceive...

    So, agreed- acceptance... in OUR case, for some people, they would argue is *not* impossible, and is not the 'same as laying down & dying' ... but, for me, that is what it would mean.... and, as I've already said many times now, for me, I can't accept something that apparently isn't even done with me yet. If I would've just hit a platteau where my pain was a ___ this, everyday, scale of 1-10, and my fatigue stayed at ___ this.. yes, I could learn to accept- just adapt.

    I bet we all feel that way, as far as that goes. We're only humans,