Do you ever just get angry about being sick?
Oooooooooo!!!! <raising hand and waving wildly> Me, me, me, me!!!! Constantly!!
yes, yes, yes
all the time.
the times i get the most angry (not outwardly of course) is when i feel
like i am disappointing my daughter who's turning 5 next month.
she understands that 'mommy has boo boos that wont go away, and some days
mommy feels ok,and other days mommy cant do the things she wants to with you'
thankfully she is a very empathetic child, and understands when anyone is sick.
however i HATE HATE HATE that i even have to explain to her i'm always going to be
dealing with these issues. I dont feel like it's fair to her. I'm suppose to be the supermom
that i want to be on the inside and in my heart.
what my heart desires, often my body cant deliver when it comes to my child.
I think I will probably always beat myself up about it
and it's the one thing that I will always be the most angry about.
Yep, sure do. All of the time.
Patze
Yes, sure do... >:(
It is becoming very evident to me that the father of our 3 adult kids will bend over backwards on a spur of the moment call that request/or invite for help with a work need or pleasure outing!!!
Well, the more I sit here and mull this issue over in my mind, the more I realize that to him its Wednesday, Oct 26, 2011, and he, too,
only gets this day once in his lifetime as I do... ???
To me the many years of the C word and in my case its CHRONIC, not the other so well recognized C word, has from my perspective taken a g-r-e-a-t toll on our 50 years of marriage. So very, very often I wish I had walked away in those early years before we had any kids....
Yes, I feel like a second rate citizen!!!! Enough said... Trust you can find that one thing in your day that makes it worth its while as I hear the big grandfather clock in the hall striking 9 a.m. The realization that I cannot go outside and do as I ONCE did depresses me soooooooooo! :P
No responses necessary, just seeing that my post has been read by others that truly understand gives me HOPE for a better tomorrow!!! :)
I believe that anger is part of the grieving process. Yes, when I think that I have made it through the process, something happens and I get to start again.
Yes, I get angry everyday and have yet to get though those 5 stages of grief they talk about,, must have been written by a person that wasent sick,,
I feel alone in my illness,, everyday I sit at home while my wife works, just me and my Doxie who is as bored as I am, who wouldnt be,, the only thing we do is take a walk around thehouse at least 20 times a day, one day just melds into another,, days are measured by months ,, where did summer go,, the illness can be consuming, things lost, things to come that may not be good, yes I am angry,
I used to drag out the pictures of the good times,, when I could walk miles, work from sunup to sundown, look at pictures of vacations at the beach,, me my wife and the boys,, pictures of me and the boys salmon fishing, I dont do that anymore, its to painful, there was a smile on my face,, a vibrant look, a confident look, now theres nothing in the mirrow looking back at me, just the face of a chronically ill person,
My sister moved in next door witht eh pretense of helping her brother,, that lasted about a month,, now even though she lives 100 feet away,, I could lay here dead for a day before my wife found me,, she never comes over, never calls,, and her husband only comes over when he needs something,
So I sit here daily,, monday means as much to me as Friday does, thers no difference, my poor wiffe of 36 years just watches her husband lose the battle to this rotten disease and everything thats coming with it, the poor thing has no clue what to do,, or even how to get us any help, I have told her to just divorce me and find someone that can give her the happiness she deserves, its that for better or worse thing that is probably keeping us together, days mean nothing, nothing but the pain that was there yesterday and will be tehre tomorrow, the arm pain, the leg pain and never a good answer of why,, yes I am angry, I guess there are only a few options left,, either just learn to live like this which isnt living,, or go bow hunting,, and maybe fall out of a tree, at least I have life insurance, and dont think for one second I havent thought about it,
I am just tired of fighing something no one can see,, Chronic isnt Cancer, one may kill you pretty quickly,, but Chronic does too,, those smart people who always say Sjogrens doesnt kill you but you can lead a life thats about equal to a person that doesnt have it are full ofit,, if you have Sjogrens along with neuro aspects along with gastro issues,, and the pain,, the unrelenting pain, well you mayhave thoughts of jumping in front of a bus to just escape the pain, and at least you will havethe peace of mind of not having to worry about what else this disease is going to do to you in the future,,
Now that my Cobra has ended,, and I have rotten insurance with no drug coverage,, I cant afford any drugs,, I make to much onmy pension and SSDI to qualify for any assistance, so basically I cant afford to get any sicker,, I wonder how long I;ll last on dollar store aspirin, Ijust came in from taking my doxie out,, I hurt more then ever,, my hands are screaming,, I feellike I have ice inmy veins,, ya,, I;m angry,,
Definitely yes. This disease is a daily struggle to manage through. But I really really do not want to become a bitter person.
Still in the hunt - I feel led to reach out to you. I feel angry too, but right now am more worried about you.
Can you do something for you that doesn't cost a lot financially or physically? A trip to the library or book store?
I have also thought about Ending it so my family can be rid of the burden and collect a lot of insurance $$. But the truth is I have a purpose and so do you. Your wife stays for a reason - she loves you!! Please don't push her away. Let her in so she can begin to understand.
I'll be praying for you, if that's OK.
KellyG
All the time.
And every time something new pops up ... I get ticked all over again.
Today ... left side of the face and lips are tingling and numbish ... it's new ... means the neuropathy is spreading ... it's so close to my throat I'm worried ...
I don't mind out and out dying ... but this inbetween stage is CRUEL.
Pick one ... cure me or kill me .. flip the freak'n switch.
So yes ... I'm still angry and will be until I'm cured or dead.
Yes, yesterday I really wanted to cry just so tired of not feeling good anymore !
My daughter was diagnosed at 17, she has good days and bad days, but at times she is very angry. I can't really blame her. Now 21, her life is more like a middle aged woman than a young vibrant woman in the prime of her life.
I'm angry too! I would do anything for her to be normal again. To be able to go to uni without getting sick. To be able to get a good job and travel like all of her friends. I'm angry that she's probably already had the best years of her life..... before she reached adulthood.
Navydad, please take some strength in the fact that we all care about you. I think of you often and hope that one day some Dr will find all the answers to your medical woes.
Take care everyone
Aussie Mum
Yes, I feel angry. And I feel like i've been ripped off. Cheated...
Luna
Yes, Yes, Yes!!!
Some days, which are coming more and more, I feel like ending it all.
The pain is just to much to take day after day, not being able to enjoy our retirement the way I'd like.
But I guess we just have to do the best we can.
This isn't living, it's existing with with a chronic illness, You bet i am angry. >:(
Cheryl
Quote from: smallfry on October 26, 2011, 01:24:21 PM
This isn't living, it's existing ....
DITTO THAT! I'm not living. I'm not dead.
I'm stuck in between ... it's CRUEL.
Side note ... left arm started burning today .. this is new.
Hurts like heck. Like rug burns all over it.
Freak'n ticks me off.
Quote from: LizPetillo on October 26, 2011, 12:42:24 PM
All the time.
And every time something new pops up ... I get ticked all over again.
Today ... left side of the face and lips are tingling and numbish ... it's new ... means the neuropathy is spreading ... it's so close to my throat I'm worried ...
I don't mind out and out dying ... but this inbetween stage is CRUEL.
Pick one ... cure me or kill me .. flip the freak'n switch.
So yes ... I'm still angry and will be until I'm cured or dead.
Oh I SSOOOO hear you on this! Cruel is putting it mildly...
Good topic and I see a lot of the same thoughts,, the miserable pain, the horrible endless round of visis to doctors that give us no relief, I dont expect to come back now, the crime against my nervous system has been commited,, But I am not one bit suprised that some of us have given it thethought that leaving this miserable existance is a far cry better alternative then living alife thats nothing short of what Liz calls cruel,, which it is,, I am not asking for miracles,, I quit asking long ago,, there are no more tears to shed,, staring at the wll has become my way of coping when i realize there is no escaping this madness, I have a neuro appt tomorrow, I dont kow why I bother to go,, she offers nothing,, and shes part ofthe biggest practice in the UPMC network in Pittsburgh,, must be 30 neuros in the bunch and i have been shoved to over half of them,, none of which has a clue why I have this neuropathy,, I still think that with enough looking,, a clue will jump out at you,, but like some of our doctors,, if it aint there,, its not there
STILL IN THE HUNT - Never give up hope. Someday, somehow we will all get help. It may be in a small way - one symptom gone, one new friend, one med that takes the edge off. Why you? Why NOT you??
Still praying for you.
Never give up. We all care so much.
I, too, am very angry sometimes. That I'm not well enough to do things I love or need to do, and also that I need to fight with doctors to get treatment. Not fair at all.
The thing I get the angriest about is the fatigue. I will be doing fine and then just hit a brick wall and cannot do another thing. I really hate it. I sleep all night and get up and feel like I haven't been to bed in days. It's really awful. The "energizer bunny" is dead.
I have moments where I feel angry that I can't do certain things that used to take no thought at all (like opening things, sitting on the floor, kicking off my shoes, etc). At least I can't without pain.
But more than angry, I feel more melancholy about the things I can't do anymore. Not out and out depressed, just down.
I do get angry in terms of losing my temper easily, though. I don't know if it's a Sjogren's thing, or just a fatigue thing where my brain can't handle anything anymore...
I get angry all the time. Over what I want to do and yet I'm to tired to even get dressed. Over wanting to play, but my hips won't even let me walk. I've been stuck on this some couch for months without even a regular bathing schedule, because sometimes a shower is even beyond my energy limits. Then I have to stop and think. When there is an emergency and one of my kids has to go to the doctor because they are really, really sick, I make myself get up and go take them. It doesn't matter how I feel at that point, it's my child and he needs care and I will make sure he gets it. We can make ourselves move when we really have to. I've been thinking it over and I've decided that I have to start making myself move for a purpose. I think I found the perfect one. By next year, both my kids will be in school. Yeah!!! ;D I'm about to be forced with the worst boredom ever, so rather then face that, I'll be going back to school at age 42. On line classes to get a Bachelor's degree in Psychology, so I can be a professional counselor. I would love to counsel people like us. Help us to find the silver lining in our lives, the things that we can still give back to life that can help us feel like more then second class citizens. When we became sick, we felt like we still had so much to offer the world, well, what happened to it? Obliviously I no longer have the strength to restrain large dogs or the hand dexterity to assist with surgeries, I can't work as a Veterinary Tech any more, but I could be a really good part-time counselor and have the opportunity to help lots of people, some maybe struggling wit the same issues we face everyday. That would be a great blessing for my life and I know if I work hard, I can make it happen It would also give me something constructive to put my time into. It will mean less time from forums, but I can always be reached through email or PM's. I think this may be one of the best steps I've taken since finding the right PCP for me. Sometimes dealing with anger means doing something about it. Showing this disease that you're not going to give up and let it win your life over. Jennifer
Quote from: puccini914 on October 26, 2011, 09:18:08 PM
I get angry all the time. Over what I want to do and yet I'm to tired to even get dressed. Over wanting to play, but my hips won't even let me walk. I've been stuck on this some couch for months without even a regular bathing schedule, because sometimes a shower is even beyond my energy limits. Then I have to stop and think. When there is an emergency and one of my kids has to go to the doctor because they are really, really sick, I make myself get up and go take them. It doesn't matter how I feel at that point, it's my child and he needs care and I will make sure he gets it. We can make ourselves move when we really have to. I've been thinking it over and I've decided that I have to start making myself move for a purpose. I think I found the perfect one. By next year, both my kids will be in school. Yeah!!! ;D I'm about to be forced with the worst boredom ever, so rather then face that, I'll be going back to school at age 42. On line classes to get a Bachelor's degree in Psychology, so I can be a professional counselor. I would love to counsel people like us. Help us to find the silver lining in our lives, the things that we can still give back to life that can help us feel like more then second class citizens. When we became sick, we felt like we still had so much to offer the world, well, what happened to it? Obliviously I no longer have the strength to restrain large dogs or the hand dexterity to assist with surgeries, I can't work as a Veterinary Tech any more, but I could be a really good part-time counselor and have the opportunity to help lots of people, some maybe struggling wit the same issues we face everyday. That would be a great blessing for my life and I know if I work hard, I can make it happen It would also give me something constructive to put my time into. It will mean less time from forums, but I can always be reached through email or PM's. I think this may be one of the best steps I've taken since finding the right PCP for me. Sometimes dealing with anger means doing something about it. Showing this disease that you're not going to give up and let it win your life over. Jennifer
You go girl!! You can do this!!
Quote from: Still in the hunt on October 26, 2011, 06:00:57 PM
the crime against my nervous system has been commited,,
It IS a crime .. isn't it?
I wanna' know who is responsible.
I'd love to haul Him (capital H) into a court of law and put Him on trial.
oh ... don't get me started ... >:(
Quote from: LizPetillo on October 27, 2011, 03:24:19 AM
Quote from: Still in the hunt on October 26, 2011, 06:00:57 PM
the crime against my nervous system has been commited,,
It IS a crime .. isn't it?
I wanna' know who is responsible.
I'd love to haul Him (capital H) into a court of law and put Him on trial.
oh ... don't get me started ... >:(
Oh yeah...
>:( One thing makes me particularly mad . . . When you tell someone that you have Sjogren's and they reply, "Oh, that's the thing that causes your eyes to be dry." That's all the average person knows about Sjogren's. What a crying shame!!!!
i think we all do. I have struggles with needing to ask my daughter for help. i have a son i take to and from school and work. I have issues getting motivated just to get up. i hate relying on someone to help me. like most here they don't understand it and find it hard to believe. my son always says mom your just too lazy and this hurts. but i know deep in my heart he dono whats going on and try hard to ignore it, my husband is starting to understand it but he too expects way more than i can deliver and it makes it even harder to bear. I simply look at it like this: i have 4 wonderful grandkids i adore i know i wont be able to do a lot for them but i will do what i can. i will be there for my children or i will make sure i can get the help i need to do what ever it is they need or want. there is always a way to get things done we just gotta do it a different way sometimes and if we have to ask for help well thats not a bad thing. I wished i could wave a wand and make everyone better. i do feel for you having a child so young mine is 17 and i know how i feel about it. I tell my son everyday how proud i am that he can do the things i can't and really strive to do more. the biggest thing you can do for your children is praise and love them i don't think anything else will make them love u anymore or less. thats what really counts. i admire you for the strenght you do have and remember love ans encouragement is the most important. teach her to play cards n board games they meant a lot to me and my brothers when we were kids and my mom was like us sick a lot. when she would have the headaches we didn't mind not spending time we knew she loved us and would spend time when she was better. i know both sides of it.. hope u find your balance and hope this helped you.. god bless
Quote from: Luna on October 26, 2011, 01:20:54 PM
Yes, I feel angry. And I feel like i've been ripped off. Cheated...
Luna
Exactly!
I WAS angry but I'm not any more. I agree with Joe - it was a part of the grieving process.
Lots of people suffer from all sorts of things. We only have one life and we just have to live it the best way we can.
I'm alive. I had friends who are not - and they didn't have Sjogren's. I have a friend, who if someone says "Why me??" says "Why not me?"
Take care - Scottie :)
Has anyone felt like they're being punished by having all these health problems?
Quote from: Narablueeyes on October 27, 2011, 07:54:34 AM
Has anyone felt like they're being punished by having all these health problems?
Punished? No.
Cursed? Yes.
Really.
About a year before really getting sick i had a wiccan get ticked at me and tell me she was casting a spell on me to make everything in me backwards ... to make me what I wasn't .... all because she disagreed with me politically. I told her that would just bounce off me and hit her back because - as wiccans know - what they send out will hit them back even harder if it's a bad thing. Here we are, about 3 years later, and my world is upside down. My health and my mental well being are the opposite of what it was.
I keep hoping that it's hit her back ... I think it's supposed to crash back on them 3 fold or 7 fold or something like that. (Can't remember what I read about wiccans).
So that's why I say 'cursed'.
puccini914 (Jennifer)
I think your post is one of the most inspiring I've read in a while. :D As Scottie says, We have one life and we need to live it the best way we can.
We all have different and similar pains, fatigue, issues of all kinds and I'm well aware some of us are not in very good health at all, but for me, I refuse to let it overtake my life. It has changed my life drastically, but it's not all I am.
I love what you say, Jennifer, about sometimes how to deal with anger is to do something about it. If we can harness that energy used for anger in a positive way, we can probably do more than we realize.
I think it's awesome you're going back to school! You'll be a great counselor. ;)
Quote from: confused on October 27, 2011, 08:59:40 AM
I seriously admire those of you that have "whatever it is" so can somehow accept and be positive.
I must say I can't. I'm mad at what has happened and tired of trying to explain it to someone who just doesn't get it.
I'm also discouraged by reactions to the fact I have pain, and that seems to be something I'm supposed to miraculously get over.
This is not the-if you find something you want to do you won't notice the pain. This is the- you are doing something you want and the pain increases and knocks you over.
I'll quit because those of you that understand will get it and those of you that have that magic "something" or "better coping skills" or whatever you wish to call it, are just not going to understand.
This also a serious pain day, so that is no doubt part of my problem. I'm fairly sure my left little toe does not hurt.
I hear you confused. I really do. My body is screaming obscenities at me today. We just need to take it one hour at a time today. And try not to broad brush those who handle it better than you and I. There's a story behind every one of them. They may not be as far along as you; may have found a medication that really works for them; or something else. I know it's the anger and frustration talking. But we all hear you! You just keep venting. It helps to get all that toxic emotion out.
Everyone on here is different, some have just some annoying things going on and its just that annoying,, some of us have stuff going on that makes us want to take the bridge in a last ditch effort to end the pain of a existance that is nothing short of walking , but your allready dead, I dont want to make all this sound like were in a Pi**ing contest to see whos pain can outdo the other,, I just know today is one of thos jump in front of a bus days, I lerally want to rip my arms and legs off,, its been a week and Ilm still waiting for the compunded medication for my sinuses,, of course I called,, I quit calling any of my doctors about how bad things are,, and I did call state agencys, got bounced around to different ones only to end up back where I started,
This type of pain is unrelenting,, no one can see it,, but i bet if thee was some sort of scanning thing,, the thing would blow up when it went across our bodies, I dont want to take opana,, I dont want to take depakote,, I dont want to take neurotin, Ilm tired of pills,, mostly becasue they do little if anything,, I agree about the wicken,, I thin she must have tossed it at me too,, I cant buy the why not me attitude,, its almost like sayinng you asked for it,, and just accepted it as something you deserved,, I didnt,, I didnt want it,, and I am sure its going to kill me alot sooner rather then later,, and THATS what scares me,, what will it be,, will it be years after being in a wheelchair,, not feeling anything, given a bath then put back to bed,, I dont thin so,,
I have had these illnesses a long time, but I can remember the rage I felt in the beginning.
Working as a nurse, I realized that there is a huge spectrum of suffering in the world, and that I really couldn't think of someone I would trade situations with. So, I didn't stay angry long.
Occasionally, I feel sad when I can't participate in a family gathering or other fun activity like traveling.
Time has helped more than anything to keep this in perspective. I do the one day at a time thing, and feel grateful for small things. The love and support from my daughters makes it easy to be positive.
My anger was very short lived during the grieving process. I most significantly felt sadness and guilt.
But now I focus on what I can do, not what I used to do. I have made peace with this body of mine and all its "problems", and I work hard to enjoy my life as it is. No, it isn't easy, but this is much better for my health. ;)
Quote from: confused on October 27, 2011, 09:15:45 AM
Oh, heavens, I didn't mean to imply anything negative towards those that are positive. I really do admire them. I also wish I had that mindset.
I think I realized that and deep down I was talking to myself more than you. ;D. Sorry
NEW TONI BERNHARD ARTICLE!!!
I read it and re-read it. Going to print it right now.
"People who are sick or in chronic pain often come to see their bodies as the enemy. This perception triggers emotions such anger, fear, and sadness. In response to these emotions, people clench and tighten muscles in their bodies. This can lead to intensifying existing symptoms or to new symptoms in other parts of the body."
http://www.psychologytoday.com/blog/turning-straw-gold/201110/using-the-body-scan-help-chronic-pain-and-illness
I talk to my Doxie,, he doesnt answer but I bet he knows everything I am saying,,
Quote from: Narablueeyes on October 27, 2011, 10:42:41 AM
"People who are sick or in chronic pain often come to see their bodies as the enemy.
It IS the enemy.
I told my husband I want to be cremated because I hate my body now.
I want to be a ghost standing next to the crematorium ... watch it burn.
It's my childish revenge ... but I want it.
He said ... 'tell ya' what, I'll have you cremated twice, you'll be twice as happy!'
I said ... heck ya'!!
:) I've got a good husband.
Angry, depressed and GUILTY!~ I get angry because I really can't plan for anything anymore....I just take one day at a time....Depressed because I am mourning my former life where I lived with spontenatity, fun, and being social! GUILTY....for not being the wife, partner, mother that I used to be...........it's all a vicious cycle. My husband is very supportive but I am not sure how much my grown sons grasp ....because I look fine!
I am not the person I was 2 years ago and if anything it hurts emotionally and mentally! The physcial pain ...well that's something I have to learn to live with.
We just attended his Aunt's funeral and I also mentioned that I want cremated.........just burn me so no one has to see me!
Quote from: Diane54 on October 28, 2011, 07:27:11 AM
mentioned that I want cremated.........just burn me so no one has to see me!
It's my ultimate revenge upon this body.
I swear I'll be a ghost standing there ... enjoying watching it burn.
REVENGE!! ha ha