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Thread: Living By Myself/Does anyone else?

  1. #61
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    Hi Lilly, Oh yes I can relate to your story, I had prostate cancer a few years ago, so had an op and they have been monitering me ever since, my partner of 15yrs didn't understand how that affected the way it changed me mentally, so we split up, but after a while a year or so, she realized how much I did with and for her, so wanted me back. by that time I had grown away from her and felt better about myself, and didn't feel the same way. It was just after that she commited suicide, and wow then the guilt feelings hit me hard. After quite a long time I met someone else, but that didn't work out, since then I have met a few others but nothing seems to go right and I feel it must be something in me that's not responding how I used to be. What happened next was my left hip was getting bad, so I had x-rays and they found out that I had arthritis badly, and then to top it all off I got this Wegie thing and couldn't walk for about 4 weeks after coming out of hospital. Luckily I had a really good friend, a mate who I met through the motorcycle club I used to run ( I don't have any family ) apart from a sister who rings me and asks how I am, then before I can answer, tells me all about how ill her and her husband are. Just before last Christmas my best buddy died, the one who used to help me out. So yes I can relate to your lonelyness, and lack of energy, crying, depression and not wanting to do anything. I do force myself to go out on a Saturday night as I love live bands, and there is a Pub quite near that has them on, but even that makes me depressed seeing couples together, going back home on my own afterwards. I feel so lonely most of the time, the phone only rings when someone is trying to sell me something or one of my friends has trouble with their car, motorbike, plumbing, clock etc, as I am a very practical engineering sort of guy. None of them understands my illness, but I have found a wonderful new tool, it's a leaflet by John Mills of Vasculitis UK, called "Understanding Vasculitis" so I am going to pass it round to friends, neighbours, doctors, nurses etc, and just hope that someone understands how I feel, at last.

    I think this site is wonderful, but nothing can replace face to face talking, or a kiss and cuddle with someone who cares.
    Look after your family, they are one of the most precious things in the world !!

    Sorry I don't think I've been much help to you, but remember you're still young. Not an old cogger like me at 69.


    I wish you all of the best for the future Acker

  2. #62
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    Acker, you have been through a lot of hard times.... I hope that being a member of this group will bring some light into your life, as it certainly has to mine and I'm sure many others. It's spring, summer is coming, get out and go to the pubs, ride your motorbike, and have a good time! I've kind of gotten over feeling bad at seeing couples together... I figure they probably have their problems just like everyone else. I think your time will come to be with someone special and enjoy life more fully!
    Anne, dx'ed April 2011

  3. #63
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    thanks for sharing your sad and touching story, Acker. now that you are here, I hope that you will feel less lonely. you can always come here and share.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  4. #64
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    Quote Originally Posted by annekat View Post
    Acker, you have been through a lot of hard times.... I hope that being a member of this group will bring some light into your life, as it certainly has to mine and I'm sure many others. It's spring, summer is coming, get out and go to the pubs, ride your motorbike, and have a good time! I've kind of gotten over feeling bad at seeing couples together... I figure they probably have their problems just like everyone else. I think your time will come to be with someone special and enjoy life more fully!
    Hi, thanks for your kind words, yes it's good to be part of this group, a real lifesaver, I'm so glad you find it's the same for you too, it's so good to just get it off your chest now and again. Most of my friends don't even know about things that have happened to me, mostly because I'm the one that tells all the jokes and funny stories ( which is a great outlet for me ) and I love to hear people laugh.
    This site and the wonderful people on it, as yourself, are the only one's I have opened up to in years, and what a relief it is. Your right summer is on it's way, that alwas makes me feel so much better, there are some lovely country rides around here, and getting out on my bike is a huge release for me.

    I have also started to learn to play the blues harp ( harmonica ) and would love to join a band again, as I was in one for 20 odd years before, just hope I will be able to keep up with them though.
    Thanks once again Acker

  5. #65
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    Hi Alysia, thanks for sending me all those new friends on facebook, that was lovely of you. I haven't opened up to people for years, and this site and wonderful people, as yourself, have been a huge help to me already.
    Thank you. Acker

  6. #66
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    Quote Originally Posted by annekat View Post
    I've kind of gotten over feeling bad at seeing couples together... I figure they probably have their problems just like everyone else....
    We (those of us who are half of a couple) certainly do! I've lived both on my own and in relationships including marriage--each has its pros and cons, but I have at times felt more lonely with a partner sitting right next to me than when I've been alone... Like in Lilly's original post about her husband just heading downstairs to do his own thing and ignoring/minimizing her pain. When you are feeling misunderstanding, criticism, lack of empathy, etc. from the person who is supposed to be your biggest supporter, it can be very lonely, just a different kind of loneliness. I would not trade my family for anything, but I sometimes long for a day where nobody judges or misunderstands or makes demands on me, or even silently notices what I haven't done... And I silently notice them silently noticing.... Or completely minimizes my pain and negates my experience by a blanket denial like, "oh, I'm sure it's nothing and you'll be fine..." Um, no, it's NOT nothing and there's no guarantee that I will be fine.

    Oops, did I accidentally rant for a minute there?!? Just a little window to the grass on the other side of the fence. I certainly feel for you, Ackerman, and everything you've been through. I hope you are able to make some more connections with people and feel more supported in your journey. Great idea to provide information to friends; hopefully some will understand. It's amazing how much it can help when even one person tries their best to 'get it' and support you. The pub with live bands is a good idea too. Maybe you'll meet someone there who shares your interests. And this forum is amazing. I have quickly become addicted because nowhere else do people so completely understand what I'm going through... I hear you though about needing some in-person contact and I hope you find it. I wonder whether there are any support groups in your area? Arthritis, Wegs or even autoimmune diseases generally... That might be worth trying.

  7. #67
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    Quote Originally Posted by LisaT View Post
    We (those of us who are half of a couple) certainly do! I've lived both on my own and in relationships including marriage--each has its pros and cons, but I have at times felt more lonely with a partner sitting right next to me than when I've been alone... Like in Lilly's original post about her husband just heading downstairs to do his own thing and ignoring/minimizing her pain. When you are feeling misunderstanding, criticism, lack of empathy, etc. from the person who is supposed to be your biggest supporter, it can be very lonely, just a different kind of loneliness. I would not trade my family for anything, but I sometimes long for a day where nobody judges or misunderstands or makes demands on me, or even silently notices what I haven't done... And I silently notice them silently noticing.... Or completely minimizes my pain and negates my experience by a blanket denial like, "oh, I'm sure it's nothing and you'll be fine..." Um, no, it's NOT nothing and there's no guarantee that I will be fine.

    Oops, did I accidentally rant for a minute there?!? Just a little window to the grass on the other side of the fence. I certainly feel for you, Ackerman, and everything you've been through. I hope you are able to make some more connections with people and feel more supported in your journey. Great idea to provide information to friends; hopefully some will understand. It's amazing how much it can help when even one person tries their best to 'get it' and support you. The pub with live bands is a good idea too. Maybe you'll meet someone there who shares your interests. And this forum is amazing. I have quickly become addicted because nowhere else do people so completely understand what I'm going through... I hear you though about needing some in-person contact and I hope you find it. I wonder whether there are any support groups in your area? Arthritis, Wegs or even autoimmune diseases generally... That might be worth trying.
    Hi Lisa, thanks for your advice about types of groups in my area, I will certainly give them a try.
    I always keep my eye out when I'm at the band gigs and motorbike do's, I think I'm more impatient the older I get
    Don't worry about having a rant, I do quite often, and feel much better for it Acker

  8. #68
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    Lilly you sound like a very nice person with a loving spirit and a giving heart! I'm sorry you have gone through such emotional trauma along with dealing with WG signs and symptoms! I have had WG for 11 years now. Both my husband and I had to retire early. I was diagnosed first in Aug. of 2003 with WG then a month later my husband was diagnosed with Nash's liver disease and ended up having to have a liver transplant. There were days that were so overwhelming I thought we'd never get through all the problems from medical to financial to emotional upsets it seemed unending! We still both have recurrent medical problems but we found that we're glad to both be alive and even though there are challenges along the way there's always hope of finding happiness you just have to be open to it! Making new friends, hey you might even try a dating service you never know you might meet the new man of your dreams who will support you and share every aspect of your life and love you through every adventure your world finds you living through! Finding Mr. Right isn't always easy and maybe there's some things you need to do first to fix your emotional well being, but you must remember you are worth whatever effort it takes to be happy! Wegener's can be a real drag, I can Totally empathize with your plight, but your world and your life if far from over! You just need to find that something that drives you to want to get up every day and be happy to be alive!!! You take care of yourself and be good to yourself start a new chapter in your life. A concerned fellow WG friend, Kathy

  9. #69
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    Hi Lily , Your story really resonates with me . I hate hearing that you hurting like this but at the same time it gives me a sense of validation knowing that there is someone else out there that is going through what I am . Although I was already divorced by 6 years when I was diagnosed , I too feel very alone . I too have days when all I do is stay in my pajamas all day and barely get out of the house and I too have a little dog that is my best friend, I don't even want to think about what I will do when she goes which hopefully is no time soon. I've seen you on here before responding to other post and just from your pic , I would have never thought you were so sad =-( YOU are BEAUTIFUL ! Inside and out ! I wish I still looked like I did before all the prednisone , I look like a troll right now =-( What's so ironic about this is that before I gained all the weight and moon face etc. etc. I still thought I wasn't worthy ..aaahh ..what I would do to look like my old self again . I feel like it's something I'm doing wrong but my doctor says it's not , I trying to have faith but sometimes it's soooo hard , I know in my heart that this is happening for a reason , God only knows . I just really wanted you to know , you are not alone and I'm thankful for finding this forum , it truly is helping to mend my broken heart. Much love to you xoxo <3 Carmen

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