Thanks for the posts!
The disabilities I am having are physical ones. The physical problems are making me depressed. I have had two types of cancer and now have liver failure. I spent most of my time in bed, alone. I am extremely weak and have lost a lot of my muscle tissue, making getting out of bed very difficult. I am often hungry and thirsty and there is no one to bring me food or tea or a cold drink.
I often need assistance getting out of bed. My muscles are badly damaged by surgery and are just too weak to lift me up. But, there is no one to help me out of bed. I regularly have bladder and bowel incontinence as I struggle to make it to the toilet. Then, there is no one to help me clean myself up. I really don't like having to give all these details. But if I don't give all these unpleasant details, people seem to assume my physical health is far, far better than it is.
Our house has stairs and it is almost impossible for me to leave the house. I often go weeks trapped in the house, especially in the winter. I have bad osteoporosis. We live in Michigan and if I fall, I break bones and they never heal well. Yes, I want to sell the house and live somewhere warmer, with no stairs. My husband and I have fought about this for years. I have no money and am dependent on him for everything. I have no leverage to get him to listen to what I want.
My husband is gone about 10 or 11 hours a day at work. On my very worst days, I tell him I can't be alone and need him to stay home with me. But, he worries he will lose his job, and goes to work anyway. I have begged him to just quit his job to take care of me, and he says no. He will be 62 years old in three months, and I want him to retire and be my caregiver. He says absolutely not. He likes working, he likes driving a new SUV, he likes going out to lunch in a restaurant every day, he likes having a big house, and he will not give that up to take care of me.
I have been mostly bed-ridden for over a decade, and my friends and much of my family have moved on with their lives and forgotten about me. I email, text, and phone them, and most do not respond at all. A few say how great it is to hear from me, but that they don't have time to talk now. And, then, they *never* find the time to talk.
Maybe I made a mistake by posting here. I don't feel understood at all. People here seem to think the problem is that I have a bad attitude. I don't need platitudes and slogans. I need additional resources, like ideas for finding a support group for very disabled people, or how to get a home health aid to help me get to the toilet on time.
Someone here said things might get better in an instant. I have lost a *lot* of my organs. I don't think they are coming back in an instant. I don't think they are coming back, ever. Yes, with some types of problems, things do get better. But, that's not the type of problems I have. My health is probably never going to get better. It has been getting worse for over a decade, and it will probably get worse until I die. A lot of illnesses are that way.
As for the idea that there is nothing worth dying for -- Do you believe that people are *never* entitled to assisted suicide? That they should suffer with cancer or other illnesses endlessly until God (or Nature, or whatever) gives them permission to die? I don't think that. I believe in assisted suicide for people who are terminally ill.
In my case, I don't know how long I have left. I already came extremely close to bleeding to death in the E.R. Maybe that will happen again in a month or two, and this time I'll die, showing that I am, in fact, terminal right now. But, maybe I have a few years left. If I do have a few years left, I'd like to find some way to make those years bearable and worth living.
I've spent many, many years on various writing projects. If I could find some way to get people interested in my writing projects, that would give my life purpose and make putting up with my illnesses worthwhile. If no one cares about my writing, the physical suffering is just too much and I want to my life over with as soon as possible.
My liver specialist says most sorts of exercise could cause another episode of life-threatening bleeding. I am supposed to keep my pulse below 70 at all times. So, that really limits what can be done with rehab.
I have gone through physical therapy about four times in my life. The first was quite successful -- physically therapy to get my eyes to align, back when I was in my twenties. But, over time as I've gotten much sicker (I'm now 57), rehab doesn't do much, at least not the mild forms that are safe for me.
I have tried to get an occupational therapist to come to my house and show me things such as aids for getting in and out of the shower, but it has been an epic battle with my insurer. I don't know if I will try again, as I have so many other things I need to fight with my insurer about.
I don't think there is really much hope in finding a treatment that will improve my ability to do things. I have tried that for over a decade, and it never works. I've really reached the point where I need people to do things for me. I spent years unwilling to admit that -- but now that I've admitted it, I can't find anyone to help me, anyway.
I really appreciate all the relies here -- very fast replies, too! I don't understand, though, the many people who say, "It will get better." Do you mean my health will get better? I have tried everything to make my health better, and nothing works. So, I don't think my health will get better. I really feel that *nothing* has gotten better in the decade since I got sick -- my social isolation has gotten worse, my marriage has deteriorated dramatically, my depression has gotten worse and worse, my finances have gotten drained. I'll like to believe that something is going to get better. But what is that something?
The disabilities I am having are physical ones. The physical problems are making me depressed. I have had two types of cancer and now have liver failure. I spent most of my time in bed, alone. I am extremely weak and have lost a lot of my muscle tissue, making getting out of bed very difficult. I am often hungry and thirsty and there is no one to bring me food or tea or a cold drink.
I often need assistance getting out of bed. My muscles are badly damaged by surgery and are just too weak to lift me up. But, there is no one to help me out of bed. I regularly have bladder and bowel incontinence as I struggle to make it to the toilet. Then, there is no one to help me clean myself up. I really don't like having to give all these details. But if I don't give all these unpleasant details, people seem to assume my physical health is far, far better than it is.
Our house has stairs and it is almost impossible for me to leave the house. I often go weeks trapped in the house, especially in the winter. I have bad osteoporosis. We live in Michigan and if I fall, I break bones and they never heal well. Yes, I want to sell the house and live somewhere warmer, with no stairs. My husband and I have fought about this for years. I have no money and am dependent on him for everything. I have no leverage to get him to listen to what I want.
My husband is gone about 10 or 11 hours a day at work. On my very worst days, I tell him I can't be alone and need him to stay home with me. But, he worries he will lose his job, and goes to work anyway. I have begged him to just quit his job to take care of me, and he says no. He will be 62 years old in three months, and I want him to retire and be my caregiver. He says absolutely not. He likes working, he likes driving a new SUV, he likes going out to lunch in a restaurant every day, he likes having a big house, and he will not give that up to take care of me.
I have been mostly bed-ridden for over a decade, and my friends and much of my family have moved on with their lives and forgotten about me. I email, text, and phone them, and most do not respond at all. A few say how great it is to hear from me, but that they don't have time to talk now. And, then, they *never* find the time to talk.
Maybe I made a mistake by posting here. I don't feel understood at all. People here seem to think the problem is that I have a bad attitude. I don't need platitudes and slogans. I need additional resources, like ideas for finding a support group for very disabled people, or how to get a home health aid to help me get to the toilet on time.
Someone here said things might get better in an instant. I have lost a *lot* of my organs. I don't think they are coming back in an instant. I don't think they are coming back, ever. Yes, with some types of problems, things do get better. But, that's not the type of problems I have. My health is probably never going to get better. It has been getting worse for over a decade, and it will probably get worse until I die. A lot of illnesses are that way.
As for the idea that there is nothing worth dying for -- Do you believe that people are *never* entitled to assisted suicide? That they should suffer with cancer or other illnesses endlessly until God (or Nature, or whatever) gives them permission to die? I don't think that. I believe in assisted suicide for people who are terminally ill.
In my case, I don't know how long I have left. I already came extremely close to bleeding to death in the E.R. Maybe that will happen again in a month or two, and this time I'll die, showing that I am, in fact, terminal right now. But, maybe I have a few years left. If I do have a few years left, I'd like to find some way to make those years bearable and worth living.
I've spent many, many years on various writing projects. If I could find some way to get people interested in my writing projects, that would give my life purpose and make putting up with my illnesses worthwhile. If no one cares about my writing, the physical suffering is just too much and I want to my life over with as soon as possible.
(12-25-2019, 01:49 PM)Traygold Wrote: Peony13,Hi, Traygold!! Thank you! We were posting at the same time.
I am so sorry that you are feeling so down. As others have said, things will get better. We only get one shot at this and it's important to try to make the best of it. But you aren't alone. Many people here have felt desperate and like there are no options. The good news is you are part of this forum's family, and you have every member here as a resource for when you need to talk or have questions. Although it's not face to face friends, I've met the most wonderful people here that are better than "real life" friends.
I don't know where you live, but is there a rehab hospital in your area? If not a full rehab hospital, is there a physical rehab unit in a local hospital? This might be a good starting point to get some good and real resources. They are run by Physiatrists which are doctors of physical rehabilitation. They are experts at working with people with physical disabilities and lead teams of physical, occupational, speech and recreation therapists, as well as rehab psychologists and other team members. The teams whole job is to make people as healthy and independent as possible, and will know of support groups and any social opportunities available. Please consider at least checking into if any are available near you. And remember you always have your friends here.
My liver specialist says most sorts of exercise could cause another episode of life-threatening bleeding. I am supposed to keep my pulse below 70 at all times. So, that really limits what can be done with rehab.
I have gone through physical therapy about four times in my life. The first was quite successful -- physically therapy to get my eyes to align, back when I was in my twenties. But, over time as I've gotten much sicker (I'm now 57), rehab doesn't do much, at least not the mild forms that are safe for me.
I have tried to get an occupational therapist to come to my house and show me things such as aids for getting in and out of the shower, but it has been an epic battle with my insurer. I don't know if I will try again, as I have so many other things I need to fight with my insurer about.
I don't think there is really much hope in finding a treatment that will improve my ability to do things. I have tried that for over a decade, and it never works. I've really reached the point where I need people to do things for me. I spent years unwilling to admit that -- but now that I've admitted it, I can't find anyone to help me, anyway.
I really appreciate all the relies here -- very fast replies, too! I don't understand, though, the many people who say, "It will get better." Do you mean my health will get better? I have tried everything to make my health better, and nothing works. So, I don't think my health will get better. I really feel that *nothing* has gotten better in the decade since I got sick -- my social isolation has gotten worse, my marriage has deteriorated dramatically, my depression has gotten worse and worse, my finances have gotten drained. I'll like to believe that something is going to get better. But what is that something?