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Loneliness
I’ve started several discussions since being on the forum. I really enjoy what they have built here for the benefit of those of us afflicted with this dreadful disease. I’ve also reached out to many of you who replied to my thoughts and information. A common theme I see is that a lot of us, myself for sure search for an ear or even a shoulder for reasons other than IPF. The disease is certainly number one and has to be, but what about a how you doing, what do you need? My wife takes such good care of me. She listens and tries to understand but only we know what we really feel. We, those living in wait for the next test or appointment. To keep this from getting too lengthy, does anyone just need someone to be there occasionally? I do. Thanks, I’m probably way off base.
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10 Replies
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I do so agree with your feelings about this horrific condition – and sometimes the effort to retain a normal appearance is just too much – and I am living on my own, family some distance away, and although friends are very good, they just can’t understand the change this condition forces on you. We can only hope for some good news, and I wish you well.
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I’ve pretty much become comfortable being alone, for the most part. My children (2 of them) are only 30 miles away, but only come here on rarely. One is an over the road truck driver-single. The other is self employed, and his child, my grandson has autism so they don’t make it here much. Until 2 months ago, the neighborhood my home was in has turned into all rentals, except me, so I didn’t develop any friendships there, but that changed as I bought a one level home – which I needed, living alone with this disease-and am fortunate to now have great neighbors. I have a good friend here, but she and her husband winter in Arizona, so I don’t see her all winter. Its been a process; I was working when I suffered a lung injury that caused my IPF at 57 yrs old. Those first couple of years were hardest in many ways, one of which was being socially isolated, although my disabled parents lived next door. They have been gone 7 years now, and that’s when the true lonely began again. Daily calls with my sister help a lot, but for a former social butterfly, I sometimes surprise myself at how I’ve adapted.
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You’re not off based. I believe our mental health is tied to connections. It re-affirms our humanity. We are force to deal with our mortality, which ain’t easy. About six months after I got my double lung transplant, I got counseling. I was shocked at how much suppressed emotion I had about the whole thing–and mine was a very successful transplant, which I attribute to having received counseling both before and after. One of the neat things I discovered was an innate connection to people who had received transplants or those awaiting new lungs. It was like soldiers who had this connection of war, as they were the only ones who could truly understand what they had gone through. I feel the same way about my brothers and sisters’ who underwent a unique experience. So I think it is therapeutic that we connect with each other, as a weapon against loneliness. My email is [email protected]
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Very nice to hear how well you have adjusted. It’s a process for sure. I know I lie to myself and others about how I’m doing but that’s OK no need to complain about things we can’t change. I’m not alone but we do isolate because I don’t get out and she doesn’t want to leave me. I miss working. I love my home, caring for my yard. It was just everything I had wanted my entire life. I was in the army during Vietnam and wandered around for awhile after. I settled in Kentucky. I got hepatitis c along my journey and a liver transplant in 2012. Then in 2017 diagnosed with IPF. I did well for years but it has caught up to me. Very low lung capacity and 02 24 7. I’m happy though most of the time. I talk to much all of the time. Take care Rhonda, you have a friend. I’m here.
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Hi! You’re not wrong. I recently started mental health counseling. It’s been pretty helpful as my home situation is less than a shoulder or ear. Means well but mind is always elsewhere. Best description is the dog in the movie “Up”……
Havent really found much that helps except being outside in beautiful surroundings. Peaceful. No one else around but me and my dog. Even then sometimes there’s too much interference.
The only thing that really helps for me anyway is being fully involved in something like a good hockey game or music or something.
Best to you and looking forward to the responses you get!
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Since an ear or a shoulder has been mentioned here, I will mention that I am a retired pastor with some training in counseling, though no degree. I think that means I can’t bill your insurance, and probably can’t bill anyone for much if anything.
I began my ministerial journey as a volunteer visitor with terminally ill prison inmates, which I did for about 6 years. I was also the sole pastor of a small church for 12 years.
And around a year ago, I learned that I have IPF, as my pulmonologist suspected. I’m on Ofev, with which my experience has been a bit iffy. I’m not yet on O2, but I believe I will be by springtime, if not sooner.
I’ve not been working since about the time I started Ofev. My income is very minimal, from two partial pensions. If it weren’t for my wife and our church, I could be homeless. I get help from time to time from friends or family, and once in a while both. I’m living. One look and you could see I’ve missed very few meals in my 67½ years.
But enough about me. Anyone who ever wants to chat, e-mail, call, whatever, Facebook even, you could even write. Like Frazier Crane, I’m listening.
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I’m very glad to see some of the things you are writing. I feel for all of you regardless of your situation. I hurt when someone can’t afford medicine, I cry when someone can’t afford food. We have to be available I think. We can’t as individuals take on the world and all it’s problems, but maybe we can offer a word or possible solution to one individual who needs it. Read these responses find one that speaks to you then respond. You have to stay private. You have to use common sense but try. Everyone benefits if we work together. Most of us are older and life wise. I have been to the bottom too many times to count, no shame in that. The shame is if I pass by a person who is hungry and not offer aid. I do feel each of you when I read your story. Thank you.
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You are so lucky to have a loving wife. I am another of the alone ones, one daughter in FLA.,a d a son 40 miles away. Np close neighbors. Only outlet I have is a visit quarterly to staff at clinical trials office. I have had ipf for almost 5 years now, I have a strong beliefe that the experimental meds from Clinical trials have worked somewhat. Am a retired RN, with 50 yrs past experience, but never dealt with anything like this awful diagnosis. Neither of my children want to discuss end of life issue. have paid funeral, and am pretty good dealing with my death.
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Hello M-14. I was in the Army in the very early 60’s. I was in the 82nd Airborne and was out before troops were over in Vietnam although Green Berets were there as Advisors. My BIL was in the 173rd Airborne and was in Vietnam and had the exact issues you have had. Hepatitis C and Liver transplant. He attributed it to Agent Orange but no proof. He was doing very well until COVID and he got it. They put him on a ventilator and he didn’t make it. I say this to let you know I was pretty close to him and his issues. I understand everyone is different.
I would like to offer a suggestion in hopes it might help you and your wife. I have to make some assumptions, so if this isn’t valid for you, at least I tried. Perhaps your wife is like mine was and didn’t talk about my IPF unless I brought it up. I sat with her one day and told her I really wish you would ask me more about my feelings about IPF and how it effects me. She said, with the prognosis of IPF I just assumed you wouldn’t want to talk about it. She said she didn’t want to bring the subject up because it would remind me there is currently no cure etc. She also said, I thought some things were just best unsaid.
After that talk, if she notices me not acting right or being to quiet, she brings IPF up and ask if WE need to talk about my feelings. She is a great wife and does everything for me and now she brings it up and we can talk honestly about OUR feelings. It does take two to Tango.
So, if you haven’t sat down and talked with her about sharing the IPF journey perhaps it might help. It helped us and especially me. BTW I bought a motorcycle since I have ridden all my life and I ride it every day weather permitting. I was born in 44 so a little older than you. The bike takes me back to some great times and I love the wind and smells and thoughts I get and don’t get by riding. I do know why a dog likes to stick his head out the window of a moving car. Maybe you could do something you used to like to do before Vietnam and have fun like I am. God Bless you M-14. Sandyman
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Sandy, you are very good at reading between the lines. Thank you. My wife can talk to me about anything, she knows that, but as you say, what do you say to someone you can’t know how or what they are feeling. My MOS was infantry, we saw action many times and it stays with you. I know what you mean by living your memories. I spend most of days in another time. I do love to stick my head out the window. Thanks brother, 😊
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