Page 1 of 2 12 LastLast
Results 1 to 10 of 17

Thread: Tired of being sick tired of the mess of my whole life

  1. #1
    Join Date
    Jan 2009
    Location
    ontario canada
    Posts
    21
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default Tired of being sick tired of the mess of my whole life

    I am so done with this crap...i grew up in an abused home just to be ill in the second half of my life...what the hell, I have had no life...i am tired of the dysfunctional health system in the niagara region in ontario...i am sick of just trying to manage a day without being a dead person walking. I just can't do this pain anymore and i can't stand my life. This is not even life...oh you look good joanne, does anyone at all care that i can look good and feel like crap. Damn I am sick of convincing people...I just am so sick of it all...I just want...I don't know, I am even too sick to cry. This darkness is like wearing me out. sorry all...
    Last edited by rob; 10-17-2009 at 08:28 PM. Reason: content/language

  2. #2
    rob is offline Super Moderator Super ModeratorEmperor of the World
    Join Date
    Feb 2008
    Posts
    3,681
    Thanks
    426
    Thanked 1,105 Times in 628 Posts

    Default

    Hi Leaf,

    I sent you a PM awhile back, I'm wondering if you got it? I moved this post from the "sticky" area to Lauri's Lounge. Almost nobody would see it in the sticky area. This way, you can get more responses.

    I understand the frustration, and the anger with so called health care professionals. Leaf, I had some terrible things happen to me when I was a kid too. And now I'm dealing with not only Lupus, but MS as well. I don't know why these things have to happen to people like you and I.

    I get the "Oh Rob you look so healthy" comments all the time. I try to take them in stride, and realize most people don't mean anything by it, they are just trying to be nice, and I don't think they know what else to say really. I gave up trying to convince others to take my problems seriously. If they don't, they are out of my life, and that includes Dr's and all the other specialists. Accept me, help me, otherwise I'll move on is my attitude now. I wish I knew something better to say to you. Just know that you are not alone.

    Rob

  3. #3
    Join Date
    Feb 2009
    Location
    essex, england
    Posts
    581
    Blog Entries
    1
    Thanks
    28
    Thanked 15 Times in 15 Posts

    Default

    leaf i'm soo sorry you having rough time i too had some stuff go on in my childhood it just seems to be never ending!!! but most of the time i look at as i was given all this for a reason to help other, educate others, what ever it is i know i'm strong enough to get throu it all and so are you!!! and its help know end with this place and people like rob!! you know we're here for you and sending you lots of virtual hugs xxxxx

  4. #4
    Join Date
    Feb 2008
    Location
    Nova Scotia, Canada
    Posts
    1,692
    Thanks
    0
    Thanked 1 Time in 1 Post

    Default

    Gentle hugs to ya leaf

    The pain and being tired all the time wears one out. People around me are so happy that I'm walking with out a cane now...pfft.

    While I'm glad to be mobile with out the cane because it means I can walk with out passing out from jolts of pain, I still suffer. But they don't see that.

    It gets very frustrating. Because I "look" all better they assume I'm not in pain any more.

    Heaven forbid if I should drop something. I aint a pickN it up.

    Well I wont go on about it. You understand. I just wanted to let you know your not alone.

    They give us things to help "manage" the pain, but it barely scratches the surface.

    I continue to search for things that make my life a little easier and fight the battle with hubbyman that clutter is NOT a good thing for me. I need to be able to move freely around and get to items I need easily with out hunting for them.

    oops said I wasn't going to go on about that

    Blaiming it on the brain fog.

    One of the best things I found for myself is tensor knee braces. OMG I love them. They cut the pain in half.

    Hope you find things to help you cope. You know we are here for you.

  5. #5
    Join Date
    Nov 2007
    Location
    Texas
    Posts
    1,189
    Thanks
    0
    Thanked 1 Time in 1 Post

    Default

    Oh Leaf...I so feel for you. Like you I was abused as a child and teen in everyway possible...I hear the frustration that now this should be your time...the crap happened in the first part of your life so now it is like you have done your dues and it is time for the good to happen.

    I wish that I could give you a magical answer, but I really can't. I survive with the knowledge that God is there...I can at least hang on to him and know this will not be forever.

    I still have extremely dark days...like you and many others, lately on this forum. Some of that can be the disease talking...I would like at times to give up and die, but it just isn't time.

    I also have the people telling me how wonderful I look/sound. Depending on the person, it is meant to be a compliment, or because they think I am whining or not really ill....try to consider the source and walk on. That is what I do now..I might answer, Really? and then say How nice that I don't look as bad as I feel, or I have learned to hide it...then with some people I just leave it at "really" and move on...they get the message. Those are the people that I never talk about how I am feeling. The most in depth I get with them is how nice the weather is and do they think it will rain.

    The nice thing about this forum is it lets us know we are not alone...not glad that others feel a bad as we, but there is a comfort all the same.
    I have promises to keep and miles to go before I sleep, and miles to go before I sleep.......Robert Frost

  6. #6
    Join Date
    May 2007
    Location
    Seattle, Washington, USA
    Posts
    3,002
    Thanks
    256
    Thanked 148 Times in 79 Posts

    Default

    Hi Leaf...tight hugs...

    For me, I find comfort in understanding why they don't get it and say you look well, you don't look sick instead of them trying to understand me with a disease.

    I find I don't have to explain my disease to anyone anymore, because I know they would not understand or provide the deep empathy I feel I need because they don't have the disease. They have nothing to relate it too.

    I do at times with my husband, find myself explaining why I am in the stupid hole...

    No matter what metaphors I use, they may understand it for the moment but to feel it, to know our daily struggles it doesn't happen. I ask, do I really what him too because it's so ugly for me.

    I figured, within me, I don't want anyone to have the mental daily struggles about my disease in their hearts and minds. I don't want them to feel, feel it...get in my head to feel the icky. No way. It is too much for me and to share that..ugh...so I don't need them to understand it anymore.

    I just request patience from him, them if I am tired, if I am in pain, if I want to stay home...it is the disease and not me. THat way no one has to own it. I made a promise to myself I will not take my frustration of my disease out on him, my husband or anyone with shortness, anger...I have to find ways to cope with it. I think the mental anguish is what I suffer most...what was.

    I realize I can not base my whole spirit, my heart on whether they get it our not. Creates too much pity within me.

    As I look back, when my Mum was dying of terminal cancer, I didn't get it. Though I felt great, great empathy..it ached my heart I never knew what she was going through..her thoughts of dying, leaving her family, her children, her pain, her depression...leaving her career early and her colleagues. Premature death. Changing.

    I never labored over and over in my mind, day after day what she was feeling. I lived my life too. I worked, I shopped, went out with friends, took vacations...

    I thought I was doing all the right things to comfort her. I'd cook for her, clean her house, massage and slather her with lotion, paint her toenails, drove all over looking for orange sherbet push-ups.....run errands..bathe her... I'd buy anything she mention in passing. I wanted to do all those things...

    I know she like it..but now, not then... I know it wasn't enough. I know now the fright she felt, the depression, the drugs, changing, missing who I was...trying to be happy for everyone, getting frustrated and quick to anger.

    I know all of us children, eight felt like we were on pins and needles at times because we simply did not know what to do...we didn't understand her pain, her broken spirit.

    My Mum, she didn't look sick, not until the last fours months of her life..she fought cancer for 2 plus years.

    Times I feel guilty for not "knowing"..but you know, I could have never known because I wasn't facing a life threatening disease then. I also try, still a work in progress not to let my husband ever feel guilty for not caring for me enough, loving me enough...showing his love. He has to life his live also, we are individuals.

    Being married to me, means never dissolving your individuality into one another but strengthening the individuality of each other and by me not seeking deep understanding from him, about my moods, about my pain, about my mental plight I am better emotionally, stronger to understand why he does not get...

    I've complained in the past, even as early as last week... about his attentiveness, but it isn't about the disease. For me, us.. it is marital issues and not about me with a disease.

    I also know I forget too, the wonderful things he did last week. I forget especially when I am having a rotten day. I am learning to reflect and all the things he did, does and not just what happened or didn't today...

    I wanted to share this because I thought it may give you a different perspective to help turn your darkness around. It helps me tremendously with family and friends...times I still fall in the hole but now I don't stay in there languishing for days and my trips in are getting fewer and fewer...

    Sometimes we have to seek support outside the home, to get the person to person feeling of caring for our disease and for the abuse we had while growing up...in a friend, in a local support group, counseling.

    I hope as the day progressed you were able to see some light...
    It is hard to be positive, to find goods things in our day while in pain..but there is good in it...we just have to keep plucking at it..make changes, find ways to cope better...

    Head hugs,
    Love Oluwa
    Last edited by Oluwa; 03-18-2009 at 01:33 PM.
    I have Lupus. So *^#@! what.

  7. #7
    Join Date
    Feb 2009
    Location
    essex, england
    Posts
    581
    Blog Entries
    1
    Thanks
    28
    Thanked 15 Times in 15 Posts

    Default

    oluwa i just wanted to say how beautifully put thank you for opening up!!! xx

  8. #8
    Join Date
    Oct 2008
    Location
    Yucca Mesa
    Posts
    234
    Blog Entries
    5
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    Quote Originally Posted by leaf View Post
    I am so done with this crap...i grew up in an abused home just to be ill in the second half of my life...what the hell, I have had no life...i am tired of the dysfunctional health system in the niagara region in ontario...i am sick of just trying to manage a day without being a dead person walking. I just can't do this pain anymore and i can't stand my life. This is not even life...oh you look good joanne, does anyone at all care that i can look good and feel like shit. Damn I am sick of convincing people...I just am so sick of it all...I just want...I don't know, I am even too sick to cry. This darkness is like wearing me out. sorry all...
    It sucks, it really does. It is amazing how I have found so many people who I can totally relate to. I know exactly what your going through. I went through the same feelings and perspectives. I was also not only raised in an abusive home but a twisted damaging cult on top of it. It was a nightmare from birth.

    Then a 16 year abusive marriage.

    By the time I was free from the mind control of the cult and my ex, I was too sick to enjoy life. It was so wrong! It is so wrong. I struggled for years to make sense of it all. How do you process this much pain?

    "But you don't look sick" I'd be surprised if there is anyone with lupus who has not seethed with frustration after hearing these words. My mother, who I took in and care for told me once "I wish I could lay in bed all day". We should not have to defend the disease that is causing us so much pain!

    Anger, frustration, pain, depression, isolation of body mind or spirit, and feeling unloved and uncared for are common feelings dealing with any form of chronic illness.

    The reason for my telling you this is to assure you, you are not in the darkness alone. I think I speak for most of us when I say, we understand. We are here with you if only electronically, we are still real humans who care and understand. All is not lost. I have had to learn to find joy in the small things in life just to maintain a little sanity. We can still experience joy. Tomorrow might just be better than today.

    Don't lose hope.
    Ayah
    Believe in Tomorrow - Appreciate Today
    http://twitter.com/LupieAyah

  9. #9
    Join Date
    Dec 2008
    Location
    UK
    Posts
    3,091
    Blog Entries
    59
    Thanks
    0
    Thanked 94 Times in 83 Posts

    Default hi

    Sending you gentle hugs.xxxx

    love
    Angel.xxxx
    I am still here,just been on new meds so unable to function like i used to.I will pop back,just know im thinking of you all and hoping you are keeping on keeping on.xxxxxxx

  10. #10
    Join Date
    Dec 2008
    Location
    Atlanta
    Posts
    3,115
    Blog Entries
    1
    Thanks
    27
    Thanked 80 Times in 69 Posts

    Default

    hi leaf,

    wish i could make it better.
    Phyllis

    share a smile today

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •