I have life threatening chronic illness. I'm trapped. Nothing I do,no matter how hard I try, it's not good enough. I can barely live a normal life each day. Some days being alive is so painful that I'd rather not be. I try with every ounce of my being not to give up. Just keep going. Just get through it. Today I spent in the emergency room for 7 hours.... 7 hours and they couldn't do anything to help. I haven't been able to eat more than a spoonful of rice for 3 days and I'm getting scared. I don't know what to do. This what I'm writing ...this very disorganized and probably the worst thing I've ever written.. but I don't care. I just want to feel better. What I have is rare and incureable and I'll probably die soon if things don't improve. That's ... That's the harsh reality I want to ignore. And if my illness doesn't kill me young I'll live my life in physical agony.. one doctor after another telling me the same old thing. "There's nothing we can do." "We can't", "We don't feel comfortable taking you as a patient"...."I'm sorry but this is just how it is for you." They don't understand what it's like... They have never experienced how it feels to have a fucked up heart and everything else. They are just doing their jobs and when there arnt enough inpaitent beds for everyone .... I have to go. If you weren't meet me in real live ...if you were to know me in person you would say this sounds nothing like me...so pessimistic and hopeless. I can't always keep up that happy go lucky positive front ok. Not when I'm stuffed in an ambulance and hooked up to called and tubes and wires and monitors for hours wondering if the pain will ever ease... Will it ever go away. never knowing if this will be the one that finally does me in...I just want to live.
I wish it would all just go away - Anxiety and Depre...
I wish it would all just go away
I am so sorry you have this life threatening illness. Is there any pastoral guidance you can take in your final days/ weeks /months/years or family support? I know how scarey it must feel and I can see how much you are fighting. I am not sure this forum is the correct one for you. I think you need to get support from hospital counselling services to help you come to terms. Really really sorry for all your struggles.
Hospitals and medical systems beneath there surface appreance are surprisingly corrupt once they become a more involved part of your every day life so it can be tricky to find a good place amongst them. It's hard to understand because doctors should be there to help people but alot of doctors and health professionals are not so good. More than usual doctors will refuse patients that have difficult conditions and complicated systems just because it looks bad to have those patients on their records or they will refuse treatment because they simply don't want to put in the effort to help people with tricky illnesses. I've been to alot of medical forums and they all end the same way so far. A toxic environment for the people like me. And it's really sad but it's true. That's not to say I won't give up on a good medical forrum to be in though. I appreciate all the kind words of support 💜 it means alot. I want to keep trying. Some days it gets so hard I'd rather just end it already. More than anything I want to live though.
And it's really hard for my family. Sometimes I just feel overwhelming guilt for all the pain I've caused them. They have sacrificed so much of their lives to take care of me and be there for me....i wish I wasn't such a cause for difficulty on their lives. And because it's so exhuasting and difficult to take care of someone chronically ill they often take out their anger and frustration from it verbally.. even though there is nothing I can do to change it. It still hurts so much and I wish I could.
I’m so sorry you are feeling like this.
Sometimes it’s so good to get it off your chest and have a little rant.
We are always here if you ever need a chat or to talk about your illness x
What exactly is wrong with you?
I personally came in terms with mortality rather simply.. I feel we are accidental clumps of particles and different fields of energy and we should try to enjoy our lives as much as possible, not fear death, forget that time exists and live in the moment as it is meant to be, and try to survive - it is our duty as representatives of life to survive and spread in spite of cosmos, that tries to kill us (with elements, asteroids, radiation and whatnot).
Why can't you be declared HOSPICE? Then it is all free and real.... Dying wont be the hard part. Dying isn't the end, it's the beginning. I'm in nursing and have been with so many patients who have had NDE's and with those who have passed. Let me tell you about my Grandmother's death journey after she turned 100 and announced to my father and I one morning at the breakfast table that she needed to "go home" now because her deceased husband from the other side needed her. She had been in coma for couple of days and a much younger friend of hers who had an impression they should come and visit her, were sitting on the end of her bed, when she suddenly woke up and sat straight up and looked at both of us and said, oh...pardon me for dozing off...I was just in the most beautiful place and there are no human words to describe what I just saw. My mother was there (Her mother died of diptheria when she was 19 and she never got over that death.) and she is so happy and I'm so happy....so happy....will you promise to take care of my son?...I said of course I will, you know I will, and then she said I love you both and they are coming to go with me now...Im so so happy....and then she laid back down and passed...just like that. Have you written down your thoughts and feelings and memories of your life? YOU MATTER NOW