Really fed up, angry and feeling hopeless, reduced to just my illness

By linni

1 min read

Been feeling weakness and exhaustion to the point where I could barely take care of my home. Severe pain on my right side and sides of my back, nausea throwing up.

Contending with a lot

I have anxiety but I finally caved under a lot of pressure from family to seek help and got my blood tested. Found out my liver enzymes are high, my family doctor wanted to rule more stuff out so I had another blood test, 2 ultrasounds, a liver biopsy, and gall bladder dye tests now they want me to get a tube shoved down my throat and check for gastritis. I said no to that test.

The emotional toll

All this constant waiting in waiting rooms, the fear and the pain has me so mentally wrecked I can't think about anything else. I'm terrified. I feel like I lost who I am as a person. My family insists on helping me around my home and bringing me to appointments, and I feel more and more like a burden like I'm taking away from their personal lives, and I told them that. I cried myself to sleep many nights. I still have not gotten any answers. I'm not mad at the doctors, I'm mad at myself. I'm so tired of this I'm running on 0 hope and no cylinders. I want and begged to have my gall bladder removed but they want more tests to make sure. Why couldn't they see this by now? I'm scared I'm going to die a slow horrible death. I'm completely isolated because I'm unable to do anything anymore.

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CommunityMember947 Member
I understand. I just came back from pulmonologist and things are not good. I just want to drive 2500 miles back to Oregon and go to my little rocky beach and lay down and just leave this world. I have many happy memories there with my last dog. My good friend is no help. Hard of hearing and wont do anything about it for 4 years. It hurts me to yell loud at him. I have no family and am not afraid to die, but want to cry. I dont want to die, but I have nothing here. I hope this helps you, as I do really understand how you feel. I am end stage. Dont even know if I can make Christmas. You are lucky to have family to help you. I am very sure they dont mind. Try to keep smiling. 
1. Allyson.Ellis Community Admin
 <inline-mention username="CommunityMember947" user-id="4725608"/>, I hear what a discouraging pulmonology appointment you just had. Those days are so tough. I understand how much you want to go to a place that brings you such comfort. I, too, love rocky, wild beaches. Where in Oregon do you like to go? Try to remember that what a doctor sees is only one snapshot in time. You know your body, how it feels, and how you are managing day to day. Many factors can influence the way your symptoms present in that one moment the doctor sees. A new tool that some doctors are starting to use is letter grade (A-D) alongside the staging. This helps look at the nuances of symptoms, and can change from appointment to appointment. This article gives some information about it that you might find interesting: <a href='https://copd.net/clinical/abcd-assessment-tool' target='_blank'>https://copd.net/clinical/abcd-assessment-tool</a> Also, in case your doctor didn't clarify, "end stage" is just another way of referring to stage 4. While it is the last or "end" of the 4 stages, it does not mean your life is ending soon! Many in the community have lived over a decade in stage 4 and are still managing - just at a slower pace of life. I thought these articles might feel encouraging. 1) <a href='https://copd.net/living/doctor-communication' target='_blank'>https://copd.net/living/doctor-communication</a> 2) <a href='https://copd.net/living/understanding-end-stage' target='_blank'>https://copd.net/living/understanding-end-stage</a> I hear how lonely it feels to live with COPD without good support. Having a friend who isn't addressing his own health challenges makes for a difficult companionship. Please know we are here to listen when you need support or a place to vent. You are not alone. Thank you for sharing so openly with us. Please keep us posted on how you are managing. Wishing you a gentle day. ~Allyson (team member)
2. CommunityMember947 Member
 I have a very good doctor. He never makes me feel bad, but it is just facts. He knows I want the truth and tell me. I wish everyone could have him. I do get over the weepies, but it is hard to do. Do I stay with my good friend of 5 years or do i go back to Oregon. I just dont know. My favorite place is Port Orford on the coast. I call it Stinky beach after my poor dog. Thankyou.
Allyson.Ellis Community Admin
<inline-mention username="linni" user-id="8663253"/>, I appreciate you sharing so openly with us. I hear how much you are struggling with the various tests you are going through and the endless waiting - both in waiting rooms and for answers. Living in the in-between is so tough. Have your doctors determined if gallbladder surgery is an appropriate treatment for you? The emotional toll of living with COPD is significant. Losing independence and needing more support from your family than you ever have before is hard. When you have always done things for yourself, being unable to do them can feel like weakness. I want to affirm that you are not weak. Navigating COPD on a daily basis takes incredible amounts of strength. Asking for and accepting help takes incredible amounts of strength. Sometimes, it can be helpful to put yourself in your family's shoes. If it was one of them needed help due to living with a chronic illness and you were the healthy one, you would be happy to be in that supportive position. I thought this article might resonate with you: <a href='https://copd.net/living/accepting-help' target='_blank'>https://copd.net/living/accepting-help</a> You are not alone struggling to find hope and a sense of purpose with this disease. It is natural to feel discouraged and hopeless when so much of your life has changed. I haven't read it yet, but a book in my "to be read" pile that a colleague who lives with a different chronic illness has reviewed and recommended is "The Anatomy of Hope." It is about finding hope when living with chronic illness. While I can't make a personal recommendation (yet!), I trust my colleague and I thought maybe it could be helpful for you. Additionally, several of our patient leaders have written about hope and purpose. These articles might offer you some encouragement. 1) <a href='https://copd.net/living/having-hope' target='_blank'>https://copd.net/living/having-hope</a> 2) <a href='https://copd.net/living/purpose' target='_blank'>https://copd.net/living/purpose</a> 3) <a href='https://copd.net/living/fulfilling-life-anyway' target='_blank'>https://copd.net/living/fulfilling-life-anyway</a> 4) <a href='https://copd.net/living/acceptance' target='_blank'>https://copd.net/living/acceptance</a> I hope some of this might be helpful for you. How are you feeling today? Know in this community you are among those who understand and empathize with the many challenges of living with COPD. We are here to listen when you need a friendly ear. Wishing you a gentle day. ~Allyson (team member)
CommunityMember6bf4c5 Member
I was given a COPD diagnosis after a 6 month coma in 1999. Plus second hand smoke. In January of this year I started to come down. I am now stage 4 but I pick my health care providers carefully. They have to understand what I am saying and give me a honest answer. My oxygen level is 99%. Still they pulled 4 pounds fluid from my lungs 2 weeks ago. I got sick a week later and coughed up 2 more pounds. I am alone with my Sunday school class ladies helping me. Yes I get tired. I do things I like when I feel like it. I paint by number. On bad days I read books on a E-reader. I have Faith that I will go when it is time, Funny movies and heartwarming movies help. God help you 
1. Melissa.Arnold Community Admin
 <inline-mention username="CommunityMember6bf4c5" user-id="9887397"/> Hi. Thank you for sharing your story with us! I can't even begin to imagine the range of emotions you felt when you woke up from your coma. You're lucky to be here! I love all the things that are part of your care plan. Not all doctors are wonderful, so it's important to choose someone who works WITH you and is easy to talk to. Are you recovering a bit following your illness last week? I hope you're doing okay. We all need someone to look out for us now and then. What a gift that your church friends were willing to step up and be there for you. Do you also have any kind of home health care? That might be useful to talk to your doctor about now, even if you don't feel like you need it. This way everyone will be on the same page and you can see what's available without the pressure. Do you have a library card? You may be able to use an app like Libby or Hoopla to read books on your e-reader. Keep taking good care of yourself! -Melissa, team member