Does anyone else experience an overwhelming sense of guilt becaue of their illness? I feel as if I am a nusense to my doctors and my family is sick of hearing me complain. I have been trying not to let anyone know how bad I am feeling because I feel like it puts too much pressure on them. They have all be so supportive, but I feel like enough is enough. Now, when they ask me "How are you feeling?" or "What's wrong?"... I just tell them that I am feeling ok and nothing is wrong. I feel like since I had the surgery in December, everyone thinks that I should be "all fixed." I am still struggling everyday with fatigue, pain and numerous other symptoms. I don't want people to worry, I don't want to become a broken record, but at the same time....I feel terrible.
I totally feel that way. I also had surgery in december, and again in march. I’m still mostly in bed. It seems all my friends bailed on me and my dh is burned out trying to care for me and 7 kids. I feel alone, depressed and afraid I will never get better.
I feel the same way, pre-op. I just don't want anyone to know I'm not feeling 110% I am supposed to be the strong one, and to relinquish that role would leave a few people unsure. I move in a month and really need to get everything in order. I am just not ready to accept being sick.
Post op and you still feel terrible?! That's horrible. If you are near Toronto let me know. I will see what I can do.
I know how you feel i have felt the same way. I had my surgery a year ago this past Janurary and it seems like im not getting any better. Im still having the painfull headaches and im constantly going to either the hospital or the doctor hearing the same old things. I have a real good family who is always by my side and at least acts like they understand what i am going through but i do hate having them worrying about me all the time so i sometimes tell them im ok when im in pain. For some odd reason my mother and youngest daughter can always tell when im not being honest about my headaches. We cant give up we have to learn how to depend on god for our help and pray that he dont move our mountains but give us the strength to climb them so keep head up help is on the way. God Bless!!!!
Hey how are you........i know exactly how u feel lol it is really hard and i have been to and from the doctors for the last 2 weeks....and in hospital twice....and now going into my 3rd week and feeling the same as i did when i started feeling sick...it is fustrating i had my surgery in july 2009 and i still have the same symptoms from before the surgery and it is exactly the same......i have to go back to the neurosurgeon who did it in the next couple of weeks if i get in so heres hoping and hopefully will get some answers really......stay strong and hopefully it will all work out
take care and all the best stephanie just message me if you need anymore help
I do feel overwelmed with guilt,
i didnt have this, my kids would have a better mother, who doesnt feel shes good for anything, my husband and I wouldnt fight all the time, My parents wouldnt have disowned me,
i feel that i let everyone down, even if i need help i dont like to say it as it might put them out,
im so angry with this, i feel ashamed of who i am, i cant be the wife i want to be, plus my husband didnt sign up for this, he married a wife that had only minor issues, not waiting by my bedside at hospital while i recover from all the surgeries,
FIXED, thats crap, ive had my sister tell me that, ive also had my father tell me that if you can drive then you must be fine, "you look fine" your just a drama queen,
i dont have surport and feel that i dont deserve it, my mother told me i must have done something really bad to get this in this life,
the sad thing is, my sister is now getting looked at for chiari, and she is very luckly that i can surpport her better than anyone else, as i know it all with it, i understand it, but on the other side i dont want her to have it, not because its horrible thing to have, but because she will get sooo much help, love and surport, where it makes me angry, as my parents disowned me and havnt helped me due to me marring a man they dont like (this has just happened) and my sister will get everything , Im just left to my own and been told how selfish i am for thinking of me sometimes,
i feel like if i was well. then none of this would happen,
but on the other hand, i am a better person for it, im very lovening and helpful where i can be, i understand the stuggles of it, and can see life in a different view, my awearness on things are better, and overall im a stronger, person,
so as much as we feel guilty, HOW WOULD YOUR LIFE PREPECTIVE REALLY BE IF YOU WERE WELL?
People who don't have Chiari don't understand us. Brain surgery is a very serious matter, it can take upwards of three years to heal, and some of us never fully recover. We need to take it easy and take care of ourselves and try not to stress over what others think, as hard as that may seem. It's only been about three months since your surgery, it's normal not to feel all right, you have a long road ahead of you. You should have a post op MRI done to make sure you don't have any CSF flow leaks and that everything's ok. Other than that, post op pain is normal, and u will probably get many jabs in your head called Ice pick pain, that's the nerves healing. Just try to take it easy, let yourself heal. Also DO NOT LIFT anything more than 3-5 pounds, you can cause serious damage, let others help you around the house!
I FEEL THE EXACT SAME WHY! no one understands me and I know/feel that they get tired of me when i express what i am feeling or when i warn them that i am having a bad day =( I feel so alone sometimes even when i have my kids and my husband and even my mother by me. Sometimes all I want to do is sleep for hours and wake up when everything is better....thing is nothing is broken its just me
I can relate! I also had my first surgery in december, 6 hospitilizations and a second surgery march 1st. I’ve been nothing but sick. My husband is great, but I can tell he is getting weary of taking care of me and our 7 kids. My friends steer clear of me, even people on facebook ignore me. I feel invisible, but guilty saying anything. It just sucks.
OMJ Facebook is the worst I used to be very active on FB but after i got diagnosed and some family member telling me to stop posting about the pain and stuff cuz ppl gonna get tired of me always whining i STOPPED POSTING all together. I feel so ALONE but at times within minutes I feel like the happiest and more loved person in the world. My mom says i am bipolar =(
the more you talk about how you are feeling , the more awearness you are doing, and maybe they can understand it,
ok now im being tough,
STOP BEATING UP ON YOURSELFS, you have chiari, atleast you have surport, a lot of us dont, you are the luckly ones, if you need help you need it, you didnt ask for this, your families didnt ask to look after you either, but give yourselfs a break, its here and you need to deal with it, accept it because you will always have it, yes sometimes its tiring, for you and the family, but hey thats what they are there for, so embrace it, allow them to help and say thankyou you really appreciate it, when you have recovered, you might not need them as much, but for now, go with it, IF YOU HAD NO ONE HOW LONELY WOULD YOU REALLY FEEL,?
now with friends they are all stupid, they dont know how to deal with it, so thats the easiest way to deal with it, walk away from you, ohhh dont get me wrong i have no family support, and most of friends dropped me, this is their problem, they couldnt handle it, im still me underneath it all,
the ones that are by your side, are your true friends they are worth being in your life,
SO WHAT ARE YOU GOING TO DO? ARE YOU GOING TO SIT THERE AND FEEL SORRY FOR YOURSELF, AND MAKE THINGS WORSE, OR ARE YOU GOING TO GET UP AND GET IT GOING FOR YOU? YOU CANT CHANGE IT, ITS YOU NOW,
Very well put Joelene! I was having a bit of a pity party for myself when I posted that, plus I was sure that there were others that felt the same guilt. I just wanted everyone to be able to feel free to vent and get it out. It has been difficult because I am a go getter. I don't usually feel sorry for myslef, I am the one in control and I run the show. Ever since I became ill, Chiari has been running the show. I try to stay positive but sometimes I just need to morn the "old me." I accepted Chiari, I adjusted to Chiari, now I need to overcome Chiari! Hope everyone is having a good day :)
joelene hossack said:
the more you talk about how you are feeling , the more awearness you are doing, and maybe they can understand it,
ok now im being tough,
STOP BEATING UP ON YOURSELFS, you have chiari, atleast you have surport, a lot of us dont, you are the luckly ones, if you need help you need it, you didnt ask for this, your families didnt ask to look after you either, but give yourselfs a break, its here and you need to deal with it, accept it because you will always have it, yes sometimes its tiring, for you and the family, but hey thats what they are there for, so embrace it, allow them to help and say thankyou you really appreciate it, when you have recovered, you might not need them as much, but for now, go with it, IF YOU HAD NO ONE HOW LONELY WOULD YOU REALLY FEEL,?
now with friends they are all stupid, they dont know how to deal with it, so thats the easiest way to deal with it, walk away from you, ohhh dont get me wrong i have no family support, and most of friends dropped me, this is their problem, they couldnt handle it, im still me underneath it all,
the ones that are by your side, are your true friends they are worth being in your life,
SO WHAT ARE YOU GOING TO DO? ARE YOU GOING TO SIT THERE AND FEEL SORRY FOR YOURSELF, AND MAKE THINGS WORSE, OR ARE YOU GOING TO GET UP AND GET IT GOING FOR YOU? YOU CANT CHANGE IT, ITS YOU NOW,
You are not alone. Everything you said, I know my daughter feels 100%.
Gotta let those feelings go though and I know it's hard. Most friends and extended family can be so awful (at least in our world over here). If you have one person (or maybe more if you're lucky) that really cares and tries to be supportive, then you have love and that's a blessing.
My daughter feels sad for me sometimes esp if she catches me crying over her. She wants me to go back to volunteering all of the time and wishes this would all end. I want our lives back too, don't get me wrong. I wouldn't be doing all of this though if I didn't love her more than anything. She's said she could never repay me but I'm not looking for that...it's just love. Simple as that.
Guilt is a normal feeling when you go from living to being a medical wreck but don't let it stop you from accepting the love you'd freely give if the roles were reversed. :)
So many of us feel this way…your not alone. Don’t apologize for speaking your mind, that is what this is for. If we can’t support each other, then who will? Yes Joelene had some very valid points, but a was a little disappointed to read her response. Seriously not only do we know this, we are constantly told this by others. I hope we can continue to write what most of us just don’t say out loud any longer, because I know sometimes I jut need o have my feelings validated by one one that knows exactly what I’m going though. Hugs to you and I hope ou are feeling better.
nicole its ok to feel like that, but for awhile, we tend to look at all the bad points too much, without looking at the good things,
if we dont accept it, then it will become harder, dont get me wrong there are days i wish i could float away, but in the end i have to keep pushing,
i like your positive mind set, but overcome it, im afraid isnt that easy, there are things we can deal with to make it easier, but it will never been gone, but if we can deal with those issues then it feels we have beaten it alittle bit,
life my not be the same and we morn who we were, but we can be better people in what we have learnt and lived with, we can show the world that no matter what, we will keep putting that one foot forward, you may have my body but i rule my head, i will enjoy the little things i use to take for granted,
i see the world differently,
the hardest part is getting your head around that life want to be what it was, and thats ok,
allow yourself time if you need it, but too much time is dangerous,
nicole you are a inspiration, you allow yourself to feel, id like to thankyou, i was dealing with emotional battle, and reading all these posts made me get past that, thankyou
i agree with you, im sorry you felt disappointed, about my comment,
i was just giving it another view to think about, cause at the end of the day, its up to us,
i wasnt trying to be nasty, just thinking about things is good, im the first to say speak up, and dont be afraid of how you feel,
i do think its good,
thankyou for your imput, i have been though so much over the last few yrs, it overwelms people to know that full story,but ive just had this journey of self healing mentally, my out look has changed, everything had to be put on the table and dealt with, this was the hardest thing to do, but i found acceptence was key number one,
and that no matter what was happening it was up to me and me only,
now im rattling on, sorry i do that alot,
Sslakemom2 said:
So many of us feel this way.....your not alone. Don't apologize for speaking your mind, that is what this is for. If we can't support each other, then who will? Yes Joelene had some very valid points, but a was a little disappointed to read her response. Seriously not only do we know this, we are constantly told this by others. I hope we can continue to write what most of us just don't say out loud any longer, because I know sometimes I jut need o have my feelings validated by one one that knows exactly what I'm going though. Hugs to you and I hope ou are feeling better.
Joelene…I didn’t think you were trying to be nasty, I just know that I am so use to apologizing every time I feel bad, or like I am wrong for feeling the way I do, that I sometimes come here to just let it out. I’m not saying your wrong…there is a lot of truth to what you said…maybe disappointed wasn’t the correct word ( and I can’t replace it with a better one right now), but I know tht sometimes I (personally) just need someone ( who understands me) to give me permission to feel what I am feeling in that moment…does that make sense? I wasn’t trying to be mean or judgemental of your opinion…sorry ifi came across that way.
sslakemon2..... i do know what ya mean, i wish i could have someone to tell me that also,
i try so hard to keep my head up, but sometimes its impossible,
i feel so loney somedays i just want to die, my husband isnt supportive my parents disowned me, ive had spine surgery to remove a cyst compressing my cord, i had decompression surgery june last yr, im now waiting for more spine surgery to remove a tumor, its hard everyday, im sooo tired, i have 3kids that are demanding, my husband ignores my issues, he disappears every chance he gets, (we just been fighting again cause i need him home, but he didnt see why,)
i feel like ive been a disappointment to everyone, i do need love, attention, and support, i want to know its all gonna be ok, i wasnt even good enough for my parents, who dropped me so fast, when i said "what about me!, they told me i was selfish and a drama queen, and to get out or they would call the police, they admitted they dont like my husband, i am no longer apart of the family, im sooo angry with that, im hurt,
i have days where i cant breath, or walk properly, i get no help from anyone, i have to do it all myself, its hard and yeh i want to vent to, but feel im selfish for doing so, i admit im trying to do, and i pretend its all ok, and theres nothing wrong, but who am i kidding,
my friends have young kids also, and i take them alot cause i think im helping, and i do hope they return it, but its never returned, im a door mat for people and dont have the balls to stand up and say enough, i allow people to walk on me, just so i dont hurt them, but what im doing is making myself sicker,
im in pain most days sometimes i need morphine, or i sit in the bottom of my shower and have the hottest water i can manage,
i dont know why i bother with it all,
so i do understand, and i know you werent being mean back, i just wanted you to know how sometimes its like for me,
i want to cry so hard, and go to sleep and not wake up, cause tomorrow will the same all over again, '
but at the end of the day, i try to look at the positive side and try to keep my head up,
I'm sorry that you thought that I was disapointed in your comment. I am happy to have anyone comment. Everyone has a right to their own feeling and their own opinion. Please don't ever hold back when it comes to my posts. I accept everyone for who they are. It is nice to have different points of view. It helps everyone to know that they may be in a certain place right now. but can move forward. I did not think you were being nasty at all! We are all here to vent and seek support.
joelene hossack said:
i agree with you, im sorry you felt disappointed, about my comment,
i was just giving it another view to think about, cause at the end of the day, its up to us,
i wasnt trying to be nasty, just thinking about things is good, im the first to say speak up, and dont be afraid of how you feel,
i do think its good,
thankyou for your imput, i have been though so much over the last few yrs, it overwelms people to know that full story,but ive just had this journey of self healing mentally, my out look has changed, everything had to be put on the table and dealt with, this was the hardest thing to do, but i found acceptence was key number one,
and that no matter what was happening it was up to me and me only,
now im rattling on, sorry i do that alot,
Sslakemom2 said:So many of us feel this way.....your not alone. Don't apologize for speaking your mind, that is what this is for. If we can't support each other, then who will? Yes Joelene had some very valid points, but a was a little disappointed to read her response. Seriously not only do we know this, we are constantly told this by others. I hope we can continue to write what most of us just don't say out loud any longer, because I know sometimes I jut need o have my feelings validated by one one that knows exactly what I'm going though. Hugs to you and I hope ou are feeling better.
Oh Jolene, I am so glad that you let it out. We are all ENTITLED to feel, however we feel. You are very brave and strong. I know it is hard sometimes, but you will get through this. You are important and you have what it takes to keep your head up. Your children are learning a great lesson from you. They see you fighting and being strong. Come here and vent all you want. We are all here to listen and offer support. My thoughts anad prayers are with you. Keep that head up girl!!!
joelene hossack said:
sslakemon2..... i do know what ya mean, i wish i could have someone to tell me that also,
i try so hard to keep my head up, but sometimes its impossible,
i feel so loney somedays i just want to die, my husband isnt supportive my parents disowned me, ive had spine surgery to remove a cyst compressing my cord, i had decompression surgery june last yr, im now waiting for more spine surgery to remove a tumor, its hard everyday, im sooo tired, i have 3kids that are demanding, my husband ignores my issues, he disappears every chance he gets, (we just been fighting again cause i need him home, but he didnt see why,)
i feel like ive been a disappointment to everyone, i do need love, attention, and support, i want to know its all gonna be ok, i wasnt even good enough for my parents, who dropped me so fast, when i said "what about me!, they told me i was selfish and a drama queen, and to get out or they would call the police, they admitted they dont like my husband, i am no longer apart of the family, im sooo angry with that, im hurt,
i have days where i cant breath, or walk properly, i get no help from anyone, i have to do it all myself, its hard and yeh i want to vent to, but feel im selfish for doing so, i admit im trying to do, and i pretend its all ok, and theres nothing wrong, but who am i kidding,
my friends have young kids also, and i take them alot cause i think im helping, and i do hope they return it, but its never returned, im a door mat for people and dont have the balls to stand up and say enough, i allow people to walk on me, just so i dont hurt them, but what im doing is making myself sicker,
im in pain most days sometimes i need morphine, or i sit in the bottom of my shower and have the hottest water i can manage,
i dont know why i bother with it all,
so i do understand, and i know you werent being mean back, i just wanted you to know how sometimes its like for me,
i want to cry so hard, and go to sleep and not wake up, cause tomorrow will the same all over again, '
but at the end of the day, i try to look at the positive side and try to keep my head up,