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Thread: not myself

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    Default not myself

    Sorry to always be the downer. But I am just struck today of how much I have changed over the past 7 years since dx. I am not myself anymore. I am a weggie.
    every decision I make has GPA consequences in the back of my mind. no more carpe diem for me - it's 'no, what if I don't feel good?'
    ive become more humble and kind I think, which is good, but I've also become a hypochondriac I'm afraid. I used to be a fun guy, now I'm too worried to have fun.
    I swore I wouldn't be defined by this disease, but I'll be damned if that has happened.

    Sent from my SAMSUNG-SM-J320AZ using Tapatalk

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    Illegitimi non carborundum est. Don't let the bastard grind you down.

    I hope you're not having symptoms and are feeling reasonably well.

    Take my dx doc's advice below.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    Mate you can still seize the day just stop if you feel bad. You might surprise yourself with how much you can do. This disease can make us build walls for ourselves that don't need to be there. Yes, you're a weggie but that's only a small part of WHO YOU are
    Forum Administrator
    Diagnosed March 2003.
    Currently but not permanetly residing in Canberra, Australia.

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    Quote Originally Posted by greenjeep View Post
    Sorry to always be the downer. But I am just struck today of how much I have changed over the past 7 years since dx. I am not myself anymore. I am a weggie.
    every decision I make has GPA consequences in the back of my mind. no more carpe diem for me - it's 'no, what if I don't feel good?'
    ive become more humble and kind I think, which is good, but I've also become a hypochondriac I'm afraid. I used to be a fun guy, now I'm too worried to have fun.
    I swore I wouldn't be defined by this disease, but I'll be damned if that has happened.

    When we can't "move" too much with our sick bodies, our souls are "moving" more, our hearts are expanding...
    Being more humble and kind, like you said you have became, is beautiful. More precious then being a "fun guy"......
    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.

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    Greenjeep,you CAN'T let this disease take control of your life. As long as you can walk and are still breathing you are still alive so go out and enjoy. There will be days when you don't have the energy or don't feel well enough but to plan your day around maybe I will be ill is just a waste. Instead think of it as "today is going to be a good day".
    Life isn't about how you survive the storm, but how to dance in the rain !

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    I know what you mean. In the last 18 months I have stopped flying model airplanes. I'm afraid of losing them in the bright sun, I'm afraid that my reaction times on the control sticks have diminished, I'm afraid that I'll make the control go the wrong way, I'm afraid that I won't have the skill to fly gracefully.
    I haven't ridden bicycles, for fear of losing balance, fear of running out of gas on the ride, fear of blurred vision not seeing a pot hole or parked car.
    There are more fears that I hve not named yet but I know that I'm not being myself.


    So, last night I wet on a short bike ride. I did not lose balance and I stayed within a close perimeter so that when I got tired I could make it home. It's a start.

    FEAR = False Events Appear Real

    All of my fears do not have to become true.

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    If feel the same challenge that you are talking about. Once when in an extremely difficult position on a job I had to make a choice. That night I read something by James Allen
    "Circumstances do not make the man , they reveal him to himself"

    Some people have easier lives than us, some people have more difficult lives. Whats important to me is what kind of person I want to be no matter what my circumstance. I'm in no way saying this is easy but it gives me something focus on that is positive and that has brought me satisfaction and happiness in times where I might have become bitter and angry.

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    I hear ya! I've been living with it for 7 yrs, too. Its difficult to live with the pain every day and its worse knowing that not much can be done about it. I keep plugging away and have found that the best thing I can do for myself is to move, that is, be active.... Even if it hurt's.... And, it usually does....
    Wegener's (​GPA )- dx Apr10, Granulomatous Hypophysitis - dx Apr10, Diaphragmatic Paralysis - dx Feb16, Bradycardia - dx Dec16. (my story)
    Forum Member Map -- world map for you to put a stickpin of where you are located....

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    I'm just now after seven years, trying very hard to find the yester me in as many ways as possible. It is not easy most days to struggle and stumble thru things, I used to do. I get exhausted sometimes and then other days I surprise myself. It's hard to not have worries and thoughts about how we feel all the time. We should all give ourselves praise and a pat on the back for the things we can do.
    I will never be that energetic hard working person I was. However I will find myself striving to do things that bring me joy, even if it takes me down a couple days.
    I really hope that you don't beat yourself up and know that you are still that fun loving person you and others know.
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


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    Greenjeep, I have been where you are! I kept looking back at the person I was when I was younger and more active when I first had wegeners. I had all the energy to push past the things happening to my body. But I'm getting older, and I do not have the energy I once had, due to damage from wegeners. I lost my husband, he divorced me, I wasn't and "fun" anymore. I was having pain that I could not control anymore. The wegeners just kept rearing its ugly self. But I decided one day that I must embrace who I am, not who I was. I struggle. I fall, I get up. I cry, I laugh. I'm strong, I'm weak.....I have good days and not so good days. I wonder what is this stupid wegeners that is robbing me of so much?? Other days I feel like I can kick its butt!! This is the life I have, I know how you feel. And I just take one day at a time. Lets celebrate the good days, rest on the other days......its not easy....but like you said, it does change us somewhat, for the better. We may be more compassionate, we may be more patient, and if we can just make someone smile, or use our new compassion in good ways, helping someone struggling with groceries and a walker, or cane. Hold a door for someone walking slow because they are in pain, you can see it in their face.....and the people behind them are rushing them and rolling their eyes, because they just don't get it. Yes, I know you feel.
    Life is a Gift~ Lilly

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