Feelings Of Guilt

[friday7]

First off please forgive any typo's but I'm not feeling up to reading right now, so I can't reread this to check for typos and I'M not the best typist.;)Sorry, but hey, maybe I'll give you a laugh.

I"ve had a hard time dealing with feelings of guilt. Ive been in the house a lot lately and I guess its getting ot me. I"m not bedridden but I 'm just not up to doing much.I know I"m sick. I know I have something that most people don't understand but yet it gets to me, and i start to feel like I should be able to do something about this. Like i"m just not trying hard enough. It's almost like people that get brainwashed. You know how you see those reports on the news shows about people giving false confessions because they just cant take anymore badgering from the police, and they're mind finally gives in and makes them think , maybe they're right. Maybe I did what they said..It's like the same thing. year after year I see doctor after doctor and they say the most hurtful things sometimes. Or worse they ignore you alltogether. And when you look to people around you for support you get things like. "well, When I get sick I push myself to get out" and helpful suggestions like that. SO instead of feeling supported you feel, Guilty. Maybe I"m not trying hard enough. Maybe it's something I'm doing. Maybe I"m just not strong enough. SOmetimes it just gets overwhelming. And i joined a support group but I'm not going to go anymore. Last time I got sick while i was there, and I was afraid i would pass out. Then the therapist running the group tells me how it's alright to come when I'm sick and how this other woman makes it here who has Fibromyalgia. So that's great instead of saying something like. Well you know you'r e body, so if you feel like you're not up to it you'r e the best judge of that. Just know we're here for you. That would be lovely to hear.. But instead she' compares me to this other woman not knowing how either of us actually feels. You then get the feeling of..well Anna nmakes it here so I should..not real helpful.

IT's really horrible when you feel horrible and you miss your life and then on top of all of that instead of getting support when you talk about it you get suggestions that don't help because they don't understand. I know it's only human but I wish some people would just learn how to support a person and not give them advice on how to deal with things that they have no idea about.

Well I just had to vent. Thanks for reading..if you could understand my typing.

[rach73]

Hi,

I am so sorry that you are feeling so bad at the moment. I just wanted you to know I completely understand how you are feeling.

I have been ill for nearly 4 years now with some sort of neurological problem plus autonomic issues that have left me housebound and on some occasions bed bound for days on end. I have no diagnosis of any ilness other than low b12 serum levels and low normal cortisol levels.

Its not helpful to try and compare yourself with other people or for others to compare you with people that are also chronically sick. You do know how your body is coping with things and you are the best advocate of what is best for you.

I also get times where I am hard on myself and call myself lazy or I am not trying hard enough. Its like this other person takes over and says "you aren't sick, if you pushed yourself you would do more." So you do more because you think the voice is right and then you end up collapsing and being even sicker. Its a vicious circle and its so easy to get sucked into it because for me no one believes (other than my family and husband) that I am sick. I look reasonably well and I can do the basics of day to day living most days, but do anymore than that and I will collapse and be bed bound for a few weeks.

I think you will find that there are a lot of people on this forum that feel exactly the same way you do. Ive seen posts where people have said they have pushed themselves for family occasions and ended up sicker. You aren't alone in this.

This is a great place to vent when you are feeling so overwhelmed you dont know where to turn, because a lot of the people here have been there and understand it.

Plus your typing was fine!

Hang on in there

Rach

[lieze]

I hate the guilt.

I get it in many forms-it's part of my personality.

I feel guilty spending any money at all on myself because I feel like I'm not a contributing member of society any longer I know really warped. I've got issues. So I really have to let go and say hey I'm going to try to enjoy every day of my life despite it all.

Just do what you feel like you can do and do not try to compare as much as possible. I think it would probably be possible to come up with a great comeback for situations like you encountered if we think on it hard that would make the therapist reexamine their own words.

If the pain that you're experiencing or discomfort outweighs the benefit of the event that you're attending it is pretty much a no brainer-stay home!

[comfortzone]

I understand too. I vasilate between anger and frustration and self deprecation, negative self talk, and generally beating myself up pretty good. I would never do that to someone else - Lord knows why I find it so easy to do that to myself. It's wearing. It's self defeating. It is not helpful at all.

I think somehow I should be able to "think" my way out of this. If I'd just find the right doctor, get the right medicine, do the right thing - life would be so much better. Of course that's not really possible. Not with this diagnosis.

I'm probably still in a bit of denial. A bit of shock. A bit of "why would I accept this? this awful thing?" No I can't accept it - and if I can't - how could I expect anyone else too.

Then the doubts.....is it 'real' or not. Of course it's real - it's documented in tests. In the vital signs - it's there. Same with the EDS - experts in our country say 'yes you have it'...??? Wha?

I seem unable to allow myself the slack I would kindly offer to another.... I push and push and flop. I get very upset when I lose things - most lately lose my mind. If I rest and take it easy - the place looks disheveled and reminds me of my weakness. I get a very poor mood when my place isn't clean - and it isn't clean a lot lately - or as clean as I'd like anyway - so the mood goes south.

Then you have no one to talk to that understands what it is to look 100% perfectly healthy -- and you know you are housing severe health issues that cause frank disability. It's not a battle that's easy to tackle. Yet we want to be engaged in some way to say our actions prove we want to be well.

Yes I hear you on that -- I think I bypass much of the guilt - because if I added that to the mix - the burden would be crushing. I try not to think about guilt - because of course we never asked for this. We did nothing to bring it on. We're doing everything we can to heal.

To not be able to support yourself when you have done so your entire life - is the most bitter pill to swallow ever. Yet at least we are alive this very day. And in this very day there are beautiful things. This is where I need to put my head and body and all of me -- into the present moment.

I get terrifying dreams of tornados lately...I'm on the ground and they are inching closer and closer as I press my body into the ground grabbing a tree for dear life - probably just a subconscious expression of what we live morning till night......... And you want it to stop desperately. Middle ground is so hard to bear .... and we appear middle ground to the world. Not well perhaps to those that know us best - but certainly not the other end of the spectrum - looking sick and very lame.

I would seek someone out to speak with about this - but that would feed my propensity to somehow validate I'm going crazy & none of it's real. It's very very real as you know!

So try try try to be kind to yourself and realize that we aren't of course the only ones carrying invisible wounds....someone is always worse off - sadly so. All corners of the world have people enduring heavy burdens ~ so we have to learn what feeds us and drives us to live in a peaceful way no matter the circumstances - because life will always have these frustrating hard things to deal with now and again. No one gets off easy - truly. But perhaps one way is to get involved with helping other people in the littlest ways we can - a phone call....an email....something to take the focus off of our hurts to bless someone else -- but only if it seems feasible with your energy of the day. Otherwise it's good to just be good to you period. Forget others and mostly forget their expectations if you can - the one you need to please is you.... Developing a non-judgemental view of yourself is crucial - and something so hard for us to do sometimes.

Hang in there :-)

[friday7]

Hi,

I am so sorry that you are feeling so bad at the moment. I just wanted you to know I completely understand how you are feeling.

I have been ill for nearly 4 years now with some sort of neurological problem plus autonomic issues that have left me housebound and on some occasions bed bound for days on end. I have no diagnosis of any ilness other than low b12 serum levels and low normal cortisol levels.

Its not helpful to try and compare yourself with other people or for others to compare you with people that are also chronically sick. You do know how your body is coping with things and you are the best advocate of what is best for you.

I also get times where I am hard on myself and call myself lazy or I am not trying hard enough. Its like this other person takes over and says "you aren't sick, if you pushed yourself you would do more." So you do more because you think the voice is right and then you end up collapsing and being even sicker. Its a vicious circle and its so easy to get sucked into it because for me no one believes (other than my family and husband) that I am sick. I look reasonably well and I can do the basics of day to day living most days, but do anymore than that and I will collapse and be bed bound for a few weeks.

I think you will find that there are a lot of people on this forum that feel exactly the same way you do. Ive seen posts where people have said they have pushed themselves for family occasions and ended up sicker. You aren't alone in this.

This is a great place to vent when you are feeling so overwhelmed you dont know where to turn, because a lot of the people here have been there and understand it.

Plus your typing was fine!

Hang on in there

Rach

Rach, thanks for the reply.

That must be really hard not having a diagnosis. I have a diagnosis, several in fact:(and I still doubt myself . But I know that you are sick. I can say that because I read you words and I hear myself. I had a friend years ago that used to fake illness to get attention..that's a whole nother kind of talk. I wish people would realize the difference.

Anyway thanks for the support. I know myself how if I push too hard I wind up making things worse..It's hard when most of the people you talk to don't get it..But as you said people hear will. That helps.

Thanks again for your understanding.

Susan

[friday7]

I hate the guilt.

I get it in many forms-it's part of my personality.

I feel guilty spending any money at all on myself because I feel like I'm not a contributing member of society any longer I know really warped. I've got issues. So I really have to let go and say hey I'm going to try to enjoy every day of my life despite it all.

Just do what you feel like you can do and do not try to compare as much as possible. I think it would probably be possible to come up with a great comeback for situations like you encountered if we think on it hard that would make the therapist reexamine their own words.

If the pain that you're experiencing or discomfort outweighs the benefit of the event that you're attending it is pretty much a no brainer-stay home!

Thanks for your support.

I know logically that guilt does nothing for you. If anything it beats you down. It's just really hard to fight it. Sometimes you need to hear from others.

I would love to come up with something to say when people like that therapist say the things they do. My first thought when she said "well Anna comes here and she has Fibromyalgia". I wanted to say well good for Anna!LOL But that wouldn't' be so smart to say. I think it might be important for me to let her know how that made me feel to be compared to someone else.

I think part of it is accepting I have a different life now and my goals and achievements are going to be different than other healthy people. I really don't care anymore about having a career and money and husband. Well, those things would be nice but right now my main focus is well, me. I think society doesn't work that way. It's all about achieving, getting out there and getting more. So it makes me feel guilty for not doing that..Even if I don't want it. stupid I know. It's hard habit to break.

Well thanks for listening and thanks for your reply. It helps.

Susan

[friday7]

I understand too. I vasilate between anger and frustration and self deprecation, negative self talk, and generally beating myself up pretty good. I would never do that to someone else - Lord knows why I find it so easy to do that to myself. It's wearing. It's self defeating. It is not helpful at all.

I think somehow I should be able to "think" my way out of this. If I'd just find the right doctor, get the right medicine, do the right thing - life would be so much better. Of course that's not really possible. Not with this diagnosis.

I'm probably still in a bit of denial. A bit of shock. A bit of "why would I accept this? this awful thing?" No I can't accept it - and if I can't - how could I expect anyone else too.

Then the doubts.....is it 'real' or not. Of course it's real - it's documented in tests. In the vital signs - it's there. Same with the EDS - experts in our country say 'yes you have it'...??? Wha?

I seem unable to allow myself the slack I would kindly offer to another.... I push and push and flop. I get very upset when I lose things - most lately lose my mind. If I rest and take it easy - the place looks disheveled and reminds me of my weakness. I get a very poor mood when my place isn't clean - and it isn't clean a lot lately - or as clean as I'd like anyway - so the mood goes south.

Then you have no one to talk to that understands what it is to look 100% perfectly healthy -- and you know you are housing severe health issues that cause frank disability. It's not a battle that's easy to tackle. Yet we want to be engaged in some way to say our actions prove we want to be well.

Yes I hear you on that -- I think I bypass much of the guilt - because if I added that to the mix - the burden would be crushing. I try not to think about guilt - because of course we never asked for this. We did nothing to bring it on. We're doing everything we can to heal.

To not be able to support yourself when you have done so your entire life - is the most bitter pill to swallow ever. Yet at least we are alive this very day. And in this very day there are beautiful things. This is where I need to put my head and body and all of me -- into the present moment.

I get terrifying dreams of tornados lately...I'm on the ground and they are inching closer and closer as I press my body into the ground grabbing a tree for dear life - probably just a subconscious expression of what we live morning till night......... And you want it to stop desperately. Middle ground is so hard to bear .... and we appear middle ground to the world. Not well perhaps to those that know us best - but certainly not the other end of the spectrum - looking sick and very lame.

I would seek someone out to speak with about this - but that would feed my propensity to somehow validate I'm going crazy & none of it's real. It's very very real as you know!

So try try try to be kind to yourself and realize that we aren't of course the only ones carrying invisible wounds....someone is always worse off - sadly so. All corners of the world have people enduring heavy burdens ~ so we have to learn what feeds us and drives us to live in a peaceful way no matter the circumstances - because life will always have these frustrating hard things to deal with now and again. No one gets off easy - truly. But perhaps one way is to get involved with helping other people in the littlest ways we can - a phone call....an email....something to take the focus off of our hurts to bless someone else -- but only if it seems feasible with your energy of the day. Otherwise it's good to just be good to you period. Forget others and mostly forget their expectations if you can - the one you need to please is you.... Developing a non-judgemental view of yourself is crucial - and something so hard for us to do sometimes.

Hang in there :-)

Thanks so much for your words.

I know what you mean about not wanting to accept it. Sometimes I feel like part of the guilt is me not being able to accept that I'm not the same person I was. That I am disabled. That the life I had is no longer my life. If I'm not accepting that, It's like I'm saying I'm well and if I'm well what am I doing laying around the house all day?! So in comes the guilt.

But I do have more acceptance than I used to. Somehow I have to accept it without feeling like I'm giving up on ever being well again. I have to accept that now I am a sick person. And this is my life. But that doens't mean it will always be that way.

The thing is I haven't always worked . I haven't always been productive. I had a hard time as teenager. I went through a depression for about ten years. And I did a lot of lying around doing nothing. I had a lot of people then telling me what to do. And I had a lot of guilt an eventually a lot of self hate.

I overcame the depression and got praise for that..But that reinforced the belief that I was doing something bad before that. The thing is I would have liked nothing better than to be happy , running around with the other kids my age but I didn't know a way to make that happen at the time. So I carried that guilt with me. Until I started to work and have goals and date and get a life. The guilt lessened. I had almost ten years..Then I got sick. I couldn't do those things that people value anymore. I had no way of proving I was a good person. On top of that you get people telling you to push yourself and not understanding. So in comes the guilt.

In many ways what I'm going through now is similar to what I went through as a teenager. Feeling helpless, no one understanding, or thinking they understood and telling me what to do and making me feel worse. What you say about having compassion for yourself is true. And I think if that girl I was, was someone else I would have compassion for her.

What's frustrating is I know all of this stuff, but yet I keep falling into the guilt trap.

But hearing form other people here that understand is good. It reinforces the good things I say to myself.

Thanks for your help

Susan

.

[Noreen]

Hi there-

I could easily have written your post (provided my fingers worked) It actually helps to know someone else is going through the same things yet it is so hard for us to parse what is physical and what is emotional. I have no support myself and feel guilty that I cannot even reliably work/volunteer at my son's school. It is a very small school (2o kids) relying on parents to help. I cannot tell how I will be from day to day and hour to hour. For my own sanity, I need to get out more yet if I expend energy doing that the very basic housework I can do doesn't get done - gone are the days when I could clean for 12 hours to whip things into shape. Now generally I only have 3 to 4 hours of energy a day and divided into 20 minute chunks throughout the day. If I go to the doctor's the energy has been used driving there and so with luck I have 2 or 3 twenty minute chunks left. Even deciding to go to the doctors takes energy and if the result of getting help is iffy that ends up balanced against the sure thing that the house will get dirtier.

Nowwhat's reply was superb. If I only had a gauge to tell me when I have pushed and pushed too much before I flop!

[Guest tearose]

You are all saying it all so well.

It is a constant feeling that we face and must deal with.

It is not in our imagination that others are misjudging us and pushing us since we tend to look "more able". We are sensitive to begin with so the additional pressure we feel from others on top of our always trying to "push the envelope" makes the perfect conditions for guilt. As well as mental torture!

I think as long as I have breath I will always try to push. I look to spiritual life to help me balance and not overdo.

I am thankful for my dearest friends here to be able to share and give and get support.

The best therapy for me is meditation and sharing here.

with love and hugs to all,

tearose

[friday7]

Hi there-

I could easily have written your post (provided my fingers worked) It actually helps to know someone else is going through the same things yet it is so hard for us to parse what is physical and what is emotional. I have no support myself and feel guilty that I cannot even reliably work/volunteer at my son's school. It is a very small school (2o kids) relying on parents to help. I cannot tell how I will be from day to day and hour to hour. For my own sanity, I need to get out more yet if I expend energy doing that the very basic housework I can do doesn't get done - gone are the days when I could clean for 12 hours to whip things into shape. Now generally I only have 3 to 4 hours of energy a day and divided into 20 minute chunks throughout the day. If I go to the doctor's the energy has been used driving there and so with luck I have 2 or 3 twenty minute chunks left. Even deciding to go to the doctors takes energy and if the result of getting help is iffy that ends up balanced against the sure thing that the house will get dirtier.

Nowwhat's reply was superb. If I only had a gauge to tell me when I have pushed and pushed too much before I flop!

That's so true about not knowing how you'll feel from day to day or hour to hour. That's the part that people have such a hard time with. I guess they can' t imagine that because they haven't experienced anything like it. Usually when people get sick they have an idea when they can' t do something when they can and when they think they are getting better. But I can feel great one minute feel like going out and all of a sudden it all goes away. I need to lie down and I'm done for the day.

It's also hard knowing what I should spend my energy on. I like you have only so much energy for the day and I have to choose what I need to spend it on...sometimes I can't even count on having energy to do anything. Or I'll have the energy but I'm too dizzy or whatever to do anything.. that's very frustrating.

I guess that's why it hurts so much when people assume we have control over these things. We are trying so hard and then you get criticized for not pushing hard enough. I guess it' s human nature. When you're not experiencing something directly, it' s really easy to give advice on how to handle it.

[friday7]

You are all saying it all so well.

It is a constant feeling that we face and must deal with.

It is not in our imagination that others are misjudging us and pushing us since we tend to look "more able". We are sensitive to begin with so the additional pressure we feel from others on top of our always trying to "push the envelope" makes the perfect conditions for guilt. As well as mental torture!

I think as long as I have breath I will always try to push. I look to spiritual life to help me balance and not overdo.

I am thankful for my dearest friends here to be able to share and give and get support.

The best therapy for me is meditation and sharing here.

with love and hugs to all,

tearose

It's true what makes being sick much worse is the lack of understanding from other people. I think if others understood it would make things so much easier on us.

I think meditation is helpful. I'm new to it and it does not come easy to me, in fact it's the opposite of what I normally do. I'm a bit of an obsessive thinker, but it's something I need to practice. Again it's not something that's highly valued in our world..Well at least in the US. I even had a therapist who I talked to about Zen and mindfulness and she said how most people couldn't meditate all day..I was like Wow she knows nothing about it. You'd think at least therapists would understand.

[comfortzone]

One good thing about moods ... they change. And maybe if there's anything good to say about invisible chronic illnesses or disorders -- it would be the same - they change. This thankfully is likely not a death sentence. It's a challenge to seek out the helps and the motivation to actually Choose - to be on the side that counts -- your side. Not choosing to help depression out or guilt. To be on your own side - sometimes takes a leap of faith in getting active. Not running a marathon or things as that....but getting physical in exercise as a goal no matter how little it is. So whether it's a stationary bike or a DVD - or a walk to the mailbox - or physical therapy -- if your doctor says it's okay to do .... it might be good medicine. Movement changes brain chemistry and makes you 'be on your side' ... It's a concious effort to do something healthy in spite of pain, in spite of lots of things. By doing this as a routine.... you build a bit of control over your body and the situation it's in. They say there's always something we can do to be more fit. Fitness helps the mind immeasurably. Even baby disciplined steps toward it. You look back at the day and say.... 'well I tried' on days where you couldn't do what you'd hoped....but most days as you learn your capabilities....you will conquer the fatigue maybe just a little, the anxiety, the paralyzing negative thoughts. It's worth a try. Many do this, maybe you already do.... I'm a slow learner - but for me lately it seems if I don't move -- I'm in serious trouble. So every day I must do something no matter how little - and by golly it makes me smile now and again - my tenacious spirit is still there ... my can-do spirit still can do.... and I can learn kindness and self-forgiveness when I blow it. But movement - as breathing - can be very grounding.