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New isolation and hopelessness

Discussion in 'Lifestyle Management' started by confetti11, May 17, 2016.

  1. confetti11

    confetti11 Senior Member

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    Hello everyone, I don't post much but I've had something on my mind a lot lately with no group of people who would likely understand this, except perhaps you.

    I've had chronic illness, diagnosed as some form of CFS, since 2000, when I was 30 years old.

    As only you guys know, being at something like this for 16 years is beyond challenging. For me, it's left me somewhere between an expert at this to even more lost about it than day one.

    My story is a little different I think in that I was fortunate to have the opportunity to be treated by one of the best doctors since late 2000. What is unfortunate about this treatment is it's cost an enormous amount of money, 99.9% out of pocket to at best a middle class family.

    What isn't always counted into the cost too, by those who don't suffer in this way, is the loss of nearly all the relationships I had growing up, and all of my family. I found I was able to stay somewhat well enough through the years of ups and downs to keep most of my friends. But a few years ago, when the money ran out and I became desperate--and everyone's answers for me would only make my life worse--I left everyone behind and fought my way out. I had to leave behind anyone who didn't believe me, believe in me and want some level of normalcy for my future.

    Cut to today, I work 50+ hours per week in an industry that can be lucrative, so I've been able to get myself almost completely out of debt and still own my home. Work is not easy and I certainly don't always feel good, but so far, I've been able to manage.

    Right when I should be feeling some satisfaction and happiness that I've been able to reach some of my goals, I feel the opposite. Maybe because I can finally see the light out of crisis, and because I don't have the crisis so much in my face, I'm left in the silence to think about all that has been lost in the aftermath.

    In addition, six months ago, my mom died just short of 80 years old. She helped me a lot while ill, but even our relationship was strained toward the end. I felt abandoned by her that she never even learned the name the illness I suffer with. She was generous and I'm grateful for that. Still, in everyone's inability to see what I was dealing with and my being too ill to have relationships or make a family of my own, I was left alone to deal with everything on my own. And because my family, who witnessed my suffering first hand, never grew to be advocates for me, no one around us knows that what I continue to deal with is real and not psychosomatic.

    I guess the most recent blow for me is I found out my parent wrote me out of their will. My dad is 87 and still lives in assisted living but I was shown their will without prompting recently through another party nonetheless. I'm just flattened again that even though they helped me a lot over the years, they were satisfied knowing they would leave me alone and with nothing more coming from them. By the date, when they wrote their will, I was still in $70K debt and upside down on my house. I didn't have the job I have now and I was more desperate to be able to afford treatments and stay well enough to work than I could describe. They knew this and still made the decision to leave me nothing--if there was anything left, they left it with my healthy brother and his family. Whatever their intention was, it's just so hurtful.

    So, all of this has led me to struggling to find my way of happiness. I'm not exaggerating when I say nearly all of my past I have no connection with--and I won't because they don't believe this illness is real. I'm not having that argument anymore with anyone.

    Fortunately, my co-workers are awesome, and while some know I deal with some kind of chronic illness, none of them understand to what extent, and it just feels isolating for me to never be able to be fully honest with anyone.

    There is a level of cruelty shown to people who struggle with illnesses like this that I could write a book about. I don't understand it, why it's acceptable, and never will. The people in my life were satisfied to leave me with no place to live, no credit, no real income and no proper medical treatments. And with tormenting symptoms. It has caused me over the years to just start feeling bad about myself. Which I don't think I did as much in the early years when I thought I had my parents and friends on my side. My view of the world has changed and I just don't feel the same way about things than I used to.

    Anyway, thanks for reading. While I do have a counselor I talk to, I still don't find that very helpful because she's never been there. I just wanted to voice my reality to others who can maybe relate.
     
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  2. erin

    erin Senior Member

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    "I felt abandoned by her that she never even learned the name the illness I suffer with."

    This almost brought the tears...So typical...So hurtful...So familiar...
     
  3. *GG*

    *GG* Moderator

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    Wow, so sorry to hear about all of this. Do/did your parents suffer from dementia at all? How many siblings are you talking about?

    Surprisingly my sister has been less than understanding (even thought she brought me to 2 day CPET testing in NY) compared to a brother of mine. And we were closer, my brothers and I could not be much further on a spectrum.

    I understand the telling co-workers anything, I worked ill for 10 years, took years to get diagnosed, people saw I had changed. But when you have an illness of diagnosis by exclusion, still hard to say see, I have proof! The illness is so poorly understood, not like the support you would get if you had Cancer.

    GG

    Welcome to the Forum, you found a great place for support and understanding!
     
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  4. ahmo

    ahmo Senior Member

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    You have been heroic in finding your way to relative health and a lucrative job. Your next assignment, should you accept it (;)) is to go beyond your negative feelings. You'll never be able to understand why your parents made this choice. But over time, maybe w/ your counselor, you'll find that you can go beyond your wholly understandable feelings of betrayal, bitterness, rage...knowing that you've survived and already shown you can overcome extreme obstacles.

    Sorry if this sounds trite. In fact, it's a life's work to not be at the mercy of other's actions and attitudes. I'm linking some sites that were helpful to me when I was in an emotional mess. Maybe something will be useful to you. If not, keep looking; Don't let the bastards get you down.:bouquet::hug:

    http://www.wisebrain.org/tools/articles/neurodharma

    http://tinybuddha.com/blog/3-reasons-to-stop-worrying-about-your-negative-thoughts/

    http://www.threeprinciplesmovies.com/

    http://www.tuberose.com/Conscious_Living_and_Dying.html

    https://www.psychologytoday.com/blog/turning-straw-gold/201107/4-qualities-mind-alleviate-suffering
     
    Vineyard1, ebethc, nenej2015 and 9 others like this.
  5. meandthecat

    meandthecat Senior Member

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    Thanks for sharing confetti11.
    The isolation is a killer....supporting each other we can beat even this
     
  6. PNR2008

    PNR2008 Senior Member

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    @confetti11 I identify with you on so many levels that I don't know where to start. After crawling out of financial home problems, I should be happy but the fight made me so much sicker, I wonder if I'll ever get back to my "former" level of health. I was just in the hospital and only one member of my family helped me. It goes on and on but I've accepted after 28 years that nothing really matters unless a real cure is found because I get worse every year.

    Hoping better for you.
     
    Mel9 likes this.
  7. taniaaust1

    taniaaust1 Senior Member

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    :( the other day I found out that my mum didnt even know what I had when she called the illness something else. I was shocked and still are that even with the support she's given me that she didnt even know that. It added a new level to feeling like this illness is an invisible one, unseen and unknown by most.

    that is so aweful that I dont know what to say to that except send you a **hug** if you are accepting of that. That kind of thing I think would leave most of us needing some counselling to get over.
     
    AndyPandy and justy like this.
  8. KristenSF

    KristenSF

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    I haven't been sick as long as you have @confetti11, but I relate to your post. I got sick two years ago. Prior to that, in 2005, my elderly parents started needing my help, so I was flying every other month or so from San Francisco, CA to southwest Florida to help them go through the usual aging stuff -- hospitalizations, assisted living, hospice.

    I loved my parents and had a good relationship with them, but after my mother died my dad got dementia and before my I got power of attorney he started spending money like a drunken sailor. By the time he died last spring I was very sick and still dragging myself to the airport every couple of weeks to deal with his latest crisis.

    He blew through his savings and In his demented state he convinced himself that I would inherit his generous pension and be well off after he died, which... LOL! I racked up debt paying for all the travel costs, his cremation costs, and I just bled money dealing with this.

    In terms of lost friendships, I have experienced this as well. It's kind of shocking to learn who will stand by you, and I couldn't have predicted it. For almost thirty years I've been part of a tightknit group of friends that took awesome vacations together regularly and felt like family. They are all mostly out of my life now. I take pains to try to explain my illness and I get things like, "But you've always been in our children's lives, this is upsetting to them. Why can't you fly to our beach house and spend time with us this summer?" People make it very clear that they are disappointed that I am not the happy, gregarious friend anymore. They don't know that I miss that person, me, a million times more than they do. They think the solution to my problem is as simple as going gluten free.

    I've got five people who get it, and I guess I should be grateful for that: My awesome partner, her mom, my amazing Doctor, my patient boss and an empathetic coworker.

    OP, I work too, and it's probably about 50 hours a week as well. I work from home and I've started stealthily working weekends so that when the workweek starts I won't be too overwhelmed. It doesn't always work out that way though.

    Anyway, sorry for being so long-winded, but I hear you and you are not alone. Sending you good vibes and empathy.
     
  9. moblet

    moblet Unknown Quantity

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    The only goals you've mentioned have been to survive the crisis, which it sounds like you've done, but you don't sound satisfied and happy that you've done so. If you look at your life from the perspective of a healthy person all you've done is get yourself back to square one (or perhaps square minus three given that you're still unwell), which hardly rates as a great achievement. From the perspective of reality though, I think it's a huge achievement, and one which you should pause to celebrate.

    Feeling happy typically demands that we feel some kind of sense of belonging and/or purpose. You've reported losing the former, and the purpose of the past few years - surviving the crisis - has run its course. In your position I'd be looking to find/rebuild either or both a sense of belonging and purpose, and accept that they may look nothing like they would have had I been healthy all along.
     
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  10. confetti11

    confetti11 Senior Member

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    Thanks everyone for your thoughts.

    erin: I'm sorry that this hits home for you too, I appreciate your telling me because it makes me feel less alone.

    *GG*: My dad does not suffer dementia. My mom had brain dysfunction the last few months of her life, but she was lucid at the time of writing her will. I have one brother. He's been married for 25 years and has two grown, healthy college-educated children. My brother has not once in 16 years even asked if I'm okay or how I'm feeling. He feels very justified in his judgment and vindicated that I'm a user, not really that sick, that it's in my head. The co-worker/work game is tricky. I felt I could only let people know after years of being there. My boss knows a little bit now, but I only told him because he was suspicious why I always needed money, or was negotiating for more money. Upon telling him, he promptly asked me if it was something in my head. ugh.

    ahmo: Thanks for your thoughts. And thank you for using a word like heroic. It feels like a heroic effort because I'm so exhausted from it, but not so much because it's really recognized by anyone. In fact, I'm still looked down upon by most everyone. Still, I hear you about trying to not let other get me down. And I guess if it were just a few others, as it once was, I could do it more easily. But now it feels like everyone, and that starts to mess with my brain. I'm going to look closely at your sites when I have some time though. I keep working to try to get past the ugliness of this fall out.

    meandthecat: Thanks for your thoughts. The emotional, physical, mental, etc. isolation is inhuman. Yet we're "expected" to heal in the midst of it.

    PNR2008: I'm sorry to hear your situation continues to worsen. Thank you for taking the time to respond with your thoughts because it means a lot to know I'm not alone.

    tanianaust1: Thanks for your thoughts about my mom. I keep telling people who will listen, including my counselor, that as I look over my past, I really stopped believing good things about my life when my mom started abandoning me. There's just something about your own mom not even working to understand that leaves a loneliness that's indescribable. And thanks for your thoughts about the will. A friend of mine who does try to help keeps focusing on the fact that I received my inheritance over the years through the help my parents have me financially for treatments. And while that may be logistically true, it's the emotional equivalent of not giving your sick child a Christmas present while taking your healthy child on a lavish vacation...because you spent that same amount of money helping your sick child get well. I just don't understand the thinking, quite frankly don't want to understand it. It's cruel.

    KristenSF: I certainly can relate to having elderly parents. Mine were still relatively young when I first got sick, but that of course changed. And I so relate to healthy friends and their expectations. It's exhausting trying to deal with it. It's why I just keep to myself now...yet I'm a very social person so it's emotionally damaging to me being isolated so much.

    moblet: Your points really hit home, and thanks for your thoughts. When you said that it feels like I'm just back at square one...yes, this is the source of a lot of my pain and grief. That's exactly it. I'm so so so exhausted from all of this (on top of being exhausted from illness) and where have I really gotten? I do recognize that I have a lot, it still just really weighs heavy on me. People in our CFS world may be able to recognize the accomplishments, but most of the people we're surrounded with won't. They'll still see me as middle aged, never-married, childless, can't travel, (not my thing-too hard on me), live in a cheap house. It shouldn't matter, but the weight of it is heavy. Yes, I'm not sure where my purpose or belonging will be, and you're right I don't think it will look at all what it would have looked like before.
     
    Last edited by a moderator: Apr 11, 2017
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  11. moblet

    moblet Unknown Quantity

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    It's true that we work as hard as high achievers just to tread water, and are then judged as lazy for it. That's a situation that's largely out of our control and with which we have to learn to live if we are to remain sane. It helps a lot if you're able to avoid those who are unsupportive or actively harmful.
    Your parents' lack of understanding of your illness feeds into this as well. They've never grasped just how much you're suffering and how bad things have been for you. Mine have behaved similarly, albeit on a smaller scale and at a greater distance.
    On this I'd add that there may or may not be a one true ultimate purpose and place to belong. It's easier for people with predictable function to pursue lifetime goals secured by visions of permanence, e.g. having a family. Any purpose or place that can engage you, however temporary it may be, will help.
     
  12. ebethc

    ebethc Senior Member

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    LOL re the gluten free... I wish it were that simple

    who is your doctor? I'm in the bay area, too. thanks.
     
  13. KristenSF

    KristenSF

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    Dr. Kaufman at OMI in Mountain View.
     
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  14. ebethc

    ebethc Senior Member

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    @confetti11 - yes, yes, yes to this entire post... It's so similar to my story that it's eerie..

    I have a feeling that my mom is going to cut me out of her will, but I don't know for sure yet.. I try so hard to focus on the positives, (like the fact that I have received SOME family help) instead of the verbal abuse & invalidation. I'm adopted, and my adoptive mother was so verbally & emotionally mean and the only way that I survived her was knowing that my childhood wouldn't last forever... I've been so panicked lately because I fear I may have to move in w her again. It's making me immobilized & agoraphobic. the physical illness is mutating into the psychological panic of pulling my life back together after being in the fog of the physical crash.

    Is it just me, or is pulling yourself out of the crash - the last stretch of climbing out of the hole - the scariest part? I don't know if I'll ever get my life back... I feel socially weird, like nobody will accept me... My last boss was so much like my mother... so irrationally mean and personally so... My health was bad, and I took that job for the amazing health insurance... This illness makes you so mercenary. I'm proud of how it's made me tough...proud to be a survivor.

    My fears are setting me back - even though I'm cautiously optimistic that I'm pulling out of my most recent (worst) crash. When I work, I make good money and I feel like all I have to do is get back on track, but it's hard when you've been out of the job market for 2 years - plus my confidence is so low.. I can't be choosey, but I absolutely can't be in a toxic environment, either.

    thanks for writing.
     
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  15. ebethc

    ebethc Senior Member

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    perfect... I have an appointment w him in august.. if I can figure out how to afford it! I have to get back to work asap.
     
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  16. ebethc

    ebethc Senior Member

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    preach... exactly.. My mom just told me I was a disappointment... I told her that I've never shown up on her doorstep asking her to take care of me. I see her the way she is and I accept it.. Ironically, if I could have had a nice little nest to go to during crashes, I wouldn't have had to sell my stock options at all the wrong times to pay my bills... I'd be very rich now.. ugh. Nobody knows about my illness, so they don't understand why I'm so poor, or stressed all the time.. everyone's always making trite self-helpy comments to me..
     
    erin likes this.
  17. AndyPandy

    AndyPandy Making the most of it

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    Jennifer J, KristenSF and ebethc like this.

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