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Thread: Living By Myself/Does anyone else?

  1. #1
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    Unhappy Living By Myself/Does anyone else?

    I have an issue that basically took me by suprise, and I just wonder if anyone else out there has a similar situation? I was diagnosed with Wegeners Dz. April, 1990. I was married in September of the same year. My husband was my rock, always there for me. Of course as time goes on, the disease changes, medical bills are expensive. Insurance is expensive. Dr visits, surgeries, CT scans, bloodwork, etc. get old. Its pretty much always something, sometimes there are some months that go by with no issues, then POW.....Flare Up!!! Well in 2010, my husband turned 49, he started having his midlife crisis. He was so sick of my disease, that he just couldnt take it. But he didnt tell me. My knee was literally falling apart after 3 arthoscopic surgeries and a total ACL replacement by a top surgeon in Tuscaloosa Al, who is the dr to the University of Alabama Football team. So when my ACL detached, the Dr just kind of freaked out, and so did my husband! It was the beginning of the end of my marriage. I just thought we would go to Birmingham and get my knee replacement, Me and my Husband by my side, not happy about it, but he would go through the motions. Well, Things did not happen that way. The details are still excruiciating for me to think about, but in a nutshell, he said he just was sick of all the disease issues, and could not take it. It had taken its toll on our 19 yr marriage, and he was unsure about his feelings for me. We took a 3 month "time" away from each other, I got a total knee replacement.....He got time to think, and continue his midlife crisis, and I begged him to let us get some counseling, but he was just not ready. I moved in with my parents in Mobile, 4 hrs from him. I thing I was in shock for a year!!!! I really could not believe the man I thought I was going to grow old with was gone......So as time went by, the disease and I were taken wonderful loving care of by my family. They watched me as I went through the divorce, as some of you know, can be like a death of your spouse. I felt like my entire life was ripped away from me because of this stupid disease! I was trying to stay busy, my sisters were here for me. My parents were helping me get back on my feet. Then my Mom saw that I really needed some of my own space. I needed a place of my own. So she helped me get an apt while I was trying to get my disability. I had a little old poodle I found 1 week before I left Tuscaloosa to move to Mobile, and he was my best friend. We were Buddies. He was about 12, and couldnt hear. He was very dependent on me. But I really needed that. I had taken care of a husband and stepdaughter for years, and suddenly.......that was gone. I feel the Lord put me and my Buddy, Who I named Bo, to help me through the time of transition of suddenly losing everything. We had each other! He was soooo cute, and loved me so much. I would be in the kitchen, and I would feel his little wet nose on the back of my calf, letting me know he was there, so I wouldn't trip on him. When the apt lease was up, I moved back in with my parents and decided that I would fix up a little rental house my dad had, and move in there. I could afford it, and I would have my own little house! My money would be going toward a purchase and not an apt rent. So thats exactly what I did. I had the attic totally emptied out and re insulated. I removed all the interior doors and bought new ones, new door knobs, new paint in the whole interior, new carpet, new windows! So Bo and I moved into our new little house. It was close to my parents, and my sisters. Ive been there about a year and half. Bo passed away about 5 months ago, and so now its just me. Well, I have never been so depressed! I dont want another pet right now, because of the expense and if I want to go somewhere, I have to make sure I do not stay away too long. But instead of putting the finishing touches on my house, that I was so excited to do......I just cant get started, and when I do, I lose interest, and start something else and around and around it goes! I wake up in the mornings crying! I mean, exactly that! I wake up and I am crying and drag myself out of bed and lay on the couch, sometimes go back to sleep. I do have good days. It seems about half and half. I swear, I just stay depressed, and just have a few good days! I am a good housekeeper, and my house is not dirty or messy, but I just have not unpacked all my boxes, set up my easel and painting items, so I can paint. Get my jewelry items out, and start creating again. Is there anyone else out there that are in a similar situation? I dont go out with friends, I feel like I am only Half Living. Half the time, I am doing what I need to do to be a good person in society, I get things done that I have to do, and participate in Church, family events, etc. Then other times, Im just a weekend recluse, living in my pajamas, eating food that makes me gain weight, and I just cant get control of my life! I know I try so hard to say, Today is the day! Then after 2 or 3 days, Im back in the hole. The depressed hole. I sleep for hours, days sometimes. Is there anyone out there who has this disease, lives alone, is in their late 40"s and is able to live a relatively happy life and feel like you are where you want to be in your life? Hmmmm.....after writing this, maybe I should write a book! (Andrew is probably saying "you already have! on this website!" Well, I love all you fellow weggies. I hope I have connected with someone out there. I am open to constructive critisism, ideas, other peoples stories.
    Life is a Gift~ Lilly

  2. #2
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    I really think you should go speak to someone who specializes in mental health, as I think that would really help you to get yourself out of this hole.

    It sounds to me like you feel like you have nothing to live for and just go through the motions... You need to find a hobby, or a person, or a job, or something that you're passionate enough about to keep you going.

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    That was very well put Lilly. I live with my parents but do feel the way you describe from time to time.

    There are many days where I don't even leave the house. Sometimes I won't go out Thursday, Friday, Saturday and Sunday. This is mostly not from depression usually but more from not having enough energy and breathing issues as well. As the months go on now this feeling and situation just gets worse and worse.

    Lilly, how are you energy wise? Do you have enough energy each day to do all the chores and walk your dog, etc? How is your breathing?

    I think going to a counselor is not a bad idea for you. You have recently gone through very traumatic events that are life changing. When I get depressed or when I just stay at home because I am not feeling well, I also will eat junk food and lounge around. I think a lot of us are guilty of that.

    I wish you lived close to me then I would come over often for visits. I think that would boost both of us up. And who knows, maybe we might fall in love and get married. Just because you are in your 40s and not in top health does not mean that someone will not again fall in love with you and marry you. I still have hope that I will get married.
    Phil Berggren, dx 2003

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    While not in the same exact situation, I understand where you are coming from. I just turned 34, I have been married for just about 4 years. I got sick and then got worse starting two years into our marriage. I feel this deep rooted fear because of being sick. I haven't yet reached remission, I haven't been able to return to the life we had before all this began.

    Will he tire of it as your husband did? Does he wish he had someone who wasn't broken? I mean, if I am already broken at 34, isn't it only going to get worse?

    My dog and two cats are my best friends. I do have friends, yes, even best friends. But, nothing compares to the true unconditional love from my pets. I would be absolutely devastated without them right now.

    I also believe that talking with someone would help you. Phil is absolutely right. We are not too old and busted to find new loves and begin new chapters in our lives. I know that you can get through this. I know you will have happy days ahead of you.

    Sending you hugs and a smile.
    Officially Diagnosed 07/31/2013

    My blog: http://nikkinicolealison.com

    "It's no use going back to yesterday because I was a different person then" - Alice in Wonderland

  5. #5
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    I live alone and have for a long time, so I'm used to it. I have three cats. But I have some of the same issues as you do, sometimes waking up depressed, leaving boxes unpacked for a long time, having days where I don't do much of anything. I also have artistic pursuits, as a maker of pottery, which I sell at a local farmers market to supplement my disability income. It can be hard to stay focused on that if things are bothering me. I'm not sure how similar our situations are. I haven't been through the pain of divorce, having never been married. But I could probably use some mental health counseling, too. At my age, 61, I think I could meet someone to possibly marry. There are a lot of old single codgers around; however, I'm pretty picky. But I think it might even be easier than if I was younger, since then a potential mate would see the WG as something to interfere with a normal life, whereas at my age, a lot of the codgers will have some health problems too and/or already have lived a full life, had families or fulfilling careers, and are now retired and living out their "golden years" the best they know how, which could include taking up with someone like me. I'm really just ruminating here and will probably let all this sink in, read your post again, read responses from others, and see if I have anything else to add later.
    Anne, dx'ed April 2011

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    Lilly, I agree with everyone else some counseling might be in order. I've had major depression on and off for years. When it gets so bad that I have anger issues I know it's time to get medication. That is probably letting it go too far and I should, no doubt, be on meds all the time, but I don't want to. With that being said the meds have been good for me when I've taken them. In addition, I see or did see (lack of money did get in the way), a therapist. That also helped a great deal. When you talk to a therapist it's all about you and sometimes we need that. I hope to resume my therapy visits later this month. I ended up having to stop right when all this stuff was going down in Nov/Dec. I miss my talks with her. I would suggest first talking to your PCP about depression and getting a diagnosis and taking it from there. Thank you for sharing your story.
    Cindy



    Earth is just a stopover and whatever you achieve there is only a small part of the deal. The Afterlife Of Billy Fingers


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    Thank you all for the advice you gave Lilly. She has been struggling with this, and we as a family try our best to keep her busy! I feel like just reading all of your different, yet similar situations, she will eventually pick up her painting soon, which is something we both do. And she is very into nature, and her jewelry making shows it.....I'm hoping she picks up on that again. She is very proud of her little house, but finds it difficult to get started on any projects because of her being tired......you all know about that! Thank u all again, u are always in my thoughts and prayers.
    Be gentle with yourself, you are doing the best you can ~ LillysMom

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    Nikki, I appreciate your reply to my lengthy story! Not all men are like my husband. We had a fun and great marriage, but he was selfish, and it was always "all about him". We were very active, and went out of town to concerts, and roadtrips on our Motorcycle, etc. I LOVED those times, and when my knee started getting in the way, I just put up with the pain, so I could continue on with my life. When it got to the point that I couldnt go anything else until my knee got fixed, he pretty much said I couldnt keep up with him, and since I couldnt drink alchohol in excess to "party" equally with him, his selfish side came out, and he did not want to understand my dz anymore. His selfishness came out and all he thought about was himself. He should have been with me at night when I got home from work sitting on the couch, rubbing my knee, watching tv with me, and just showing me he was sad I was hurting. But instead he went down to the basement, drank beer, played on the pool table, got in the hot tub, .....he would come upstairs and say...come down with me instead of sitting there feeling sorry for yourself. I say all this, to say that your husband may be the sweet kind that wants to be there for you, wants you to let him into your life, and you will not feel so broken. I feel broken too, and I have lots of opportunities to go out, listen to live music, (which I Love to do), but I dont go because I know I will b ready to leave early, and I cant drive myself at night because of my pain meds. Vicious cycle!!!!! But if your husband wants to b a part of your life, disease and all, let him in. Your original dreams may have changed, but there are new ones that you can make with him. And I feel like you will go into a remission sooner or later. Also, I read your blog. I left a msg. but it disappeared and I dont think you got it. I have been wanting to start a blog but dont know how, and I suppose I need a computer first!! lol Take care....Blessings, and thank you for your advice......hugs to you <3
    Life is a Gift~ Lilly

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    Cindy, you are right, counseling has really helped me in the past, and I have thought about getting back into seeing someone at least 2 times a month. Just to help me stay on track. Its amazing what someone telling you what you know you need to do will help you!! Thank u so much for your advice. I so appreciate it. I know how you feel having to stop going, lack of money, etc. It is so difficult, you just want to give up! But we have to keep on going! By the way.....I love your "before" pic! And I love the eyeshadow!!!! You look so pretty!!! Thank you so much for helping me.......Blessings and hugs <3
    Life is a Gift~ Lilly

  10. #10
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    Anne, I love your sense of humor about the age and finding a husband or boyfriend! So funny!!! We do have similar issues about just having a lack of energy for doing things we want. Then we feel guilty! Arrrrgggghhhh!!!! Thank you for sharing, Its good to know there is someone else out there that does have the same issues about getting things done, and having artistic pursuits........I really feel like if I could do my painting, I would feel like I was accomplishing something!!! Thank you! Blessings!
    Talk to you soon
    Life is a Gift~ Lilly

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