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Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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narcissistic parent

Discussion in 'Lifestyle Management' started by outdamnspot, Oct 15, 2013.

  1. outdamnspot

    outdamnspot

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    I'm not sure if anyone here is unlucky enough to still have to live with their parents at 28 -- I hope not! -- but unfortunately, due to the severity of my condition, I'm still dependent on mine.

    I can go more into the specifics of my situation, but I don't want to create too-long-a-thread, and I'd just be venting really.

    My mother fails to take my symptoms particularly seriously though, despite my best efforts to educate her through a meeting with my psychiatrist. Our relationship veers from superificially pleasant to completely toxic, and my financial dependence on her and my father just creates resentment and fear.

    I'm far too disabled to work (primarily due to severe anxiety more than anything else) and don't qualify for any social services here, because I'm not a citizen. There's a 2 year wait.

    Are there any resources anyone who's possibly in a similar situation have found useful?
    vli likes this.
  2. Valentijn

    Valentijn Activity Level: 3

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    outdamnspot - which country are you in? And which country are you a citizen of?
  3. Esther12

    Esther12 Senior Member

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    Sorry to hear about your difficulties. It must be hard for everyone in that situation.
  4. caledonia

    caledonia

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    You may be able to apply for disability in the country you are a citizen of, and have the check sent to where you are now. It would be helpful to know where you're a citizen and where you live now.

    Even though there's a two year wait, I would get started now. Otherwise, in two years, you'll be right where you are now. Just knowing that you have something in the works, should be helpful in helping you cope.

    Then the other thing is to work on the anxiety. What can you tell us about that - how did it start, what treatments have you tried, what helps, what doesn't, what makes it worse, etc.
    Daffodil, beaker and peggy-sue like this.
  5. AbbyDear

    AbbyDear

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    you might consider a video like "Invisible", but if people refuse to believe not sure. My family does not fully understand, but some are somewhat sympathetic. Most friends just think it a mood thing, and anti-depressant treatment is the magic needed. Doctors on the other hand, well, they just don't get it at all.

    http://www.invisiblethemovie.com/
    http://immunedysfunction.org/audiovideo.html

    Not sure if the video is still available - its was avaialble from prohealth and amazon, but I do not see any more. Otherwise, maybe something similar on youtube.

    Good luck.
    beaker likes this.
  6. SickOfSickness

    SickOfSickness Senior Member

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    Sorry you are in that frustrating situation. There are others on this forum who are stuck in a bad situation because of finances or needing care.

    If you are or get involved with a church, they might give assistance or help you find some.
    beaker likes this.
  7. SOC

    SOC Moderator and Senior Member

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    Perhaps educating her through a meeting with a medical doctor who knows something about ME/CFS would be better than trying to use a psychiatrist to educate your mom about a medical condition...?
    Countrygirl, helen1 and Valentijn like this.
  8. Thinktank

    Thinktank Senior Member

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    I highly recommend you to show them the video's of "wetenschap voor patienten" from the Dutch ME/cvs foundation.
    They have done some excellent interviews with Dr. Kenny de Meirleir and a few others who explain what CFS is, what conditions it may cause and more. The videos are provided with English subtitles.

    See http://www.youtube.com/user/WetenschapvMEcvsVer/videos
  9. outdamnspot

    outdamnspot

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    Thanks for your replies everyone.

    First off, and I really hope this is okay, but I don't have an official CFS/ME diagnosis. I suffer from ADHD, OCD, severe depression and agoraphobia. I used to prominently post on neuroscience forums like imminst and mindandmuscle, but I have such a wide range of medication and supplement sensitivities that have been getting progressively worse, and so I figured something else might also be up; since I know medication sensitivities are a facet of CFS, I came here in the hope I could relate more to others. Whenever I report that e.g. simple Vitamin D creates a lot of anxiety, it's met with confusion.

    So, the primary difficult has been getting my parents to gauge the extent of my anxiety. Most therapists have just suggested I give up at this point, since you can only go so far in trying to change someone.

    To answer your questions, as far as anxiety goes, I've tried:

    SSRIs (don't help much, get movement problems on them), atypical antipsychotics (akathisia, worsened anxiety), benzos (paradoxical reaction), stimulants (more irritable), MAOIs (Parnate was the best for depression and ADHD, but I couldn't sleep on it). More recently, I tried Memantine and Riluzole, which both worsened my anxiety for some frustrating reason.

    I haven't tried things like Lithium and Lamictal, but am considering going down that route next. I had an okay response to Neurontin, but it caused severe brain fog and apathy.

    Most supplements don't do anything or make me worse, but I have some Inositol on the way, which I've never properly trialed for OCD.

    I've had numerous courses of CBT for OCD as well as psychodynamic therapy, but my anxiety was too severe to budge and I can no longer afford therapy.

    I live in Australia, but am a citizen of New Zealand. I would love to just go back to New Zealand, since I have friends there, but due to the severity of my condition (essentially housebound) and poor medication responses, it isn't possible right now.

    Thank you all again for your responses. If you have any further questions, let me know.
  10. peggy-sue

    peggy-sue

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    I can't add much apart from great sympathy with OCD and anxiety and ADHD and possibly ME.

    Been there, got the t-shirt.

    CBT for OCD was a disaster. All they do is try to force you to change your physical actions, they don't address why you are doing it, or what is driving the anxiety.

    You are left with the anxiety - trying to find another coping mechanism.

    The actions you take on with OCD are a way of trying to take some control over something, because the option to take control of what is really and truly making you anxious, is not available.

    And much empathy with a mother like that.

    Mine refused to believe I had period pains when I was very young - even when she found me wrapped around the toilet at 5 am, throwing my guts up with the pain.
    SickOfSickness, justy and outdamnspot like this.
  11. outdamnspot

    outdamnspot

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    Thanks for the sympathy peggy-sue, and likewise I feel for you.

    You nailed something essential about OCD -- the fact that you can't take control of what is truly making you anxious. It's the most frustrating existence imaginable .. like an itch you can never, ever scratch, to use a shopworn saying. I understand the mechanics of exposure therapy, and why it should work, and why it's a necessity, but the problem is so overwhelming that I don't know if I care anymore. It's easier just living my life as mindless distraction.
  12. peggy-sue

    peggy-sue

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    The exposure did help... a little... to deal with cutting down all the time and effort I had to put into washing everything and tracking what had touched what (for cross contamination) and what had to be avoided because something had touched it...

    all that was an awful lot of work.

    The only plus point of OCD was that I succeeded in giving up biting my nails!

    Sorry for diving straight to the point - is it your mother who is the source of the anxiety and feelings of lack of control?

    Does she expect you to be "perfect in every way"?
    Does she only care for you when you do something well - but then takes the credit for it herself?
    Does she disown you when you don't do "well enough"?
  13. outdamnspot

    outdamnspot

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    Ah, yes, I suffer from primarily mental compulsions, which seem much more evasive and difficult-to-tame ..

    I would be lying if I said yes; I've had OCD for nearly 10 years and that is the primary thing crippling me, but the stress from dealing with my parents doesn't help. I often get OCD fears superimposed onto our relationship, i.e. I think "if I don't please my parents" then something drastic will happen, e.g. "they'll kick me out of the house" .. which is irrational, because they've never threatened to. The actual dynamics are more intricate and subtle than that, i.e. a lot of blame, guilt-mongering etc.
    Not anymore, but she still wants me to do things *her* way .. e.g. even though it's noisy all day and I can't concentrate, I shouldn't stay up all night because she doesn't like it. Sometimes I sense a kind of disgust in that she can't accept me for who I truly am, and which is probably why she lives in denial of my OCD. When I've broken down and opened up to her in moments of despair, she becomes dismissive and almost repulsed by my fears and weakness; naturally, I don't confide in her anymore.

    Again, since becoming sick, I don't do anything well .. it's more about me living up to some image she has for me. She's a compulsive giver/martyr and will consequently go out of her way to help me (with strings attached, of course) when I don't want or need it. I think she has some fetishized ideal of what our relationship should be; I think she unconsciously thrives on me being dependent on her. She more fits the profile of a self-sacrificing, masochistic narcissistic, as opposed to an elitist, malignant one.
  14. peggy-sue

    peggy-sue

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    :p

    My washing/contamination problems seemed much more difficult to deal with than any other sort - at the time, to me.

    There was a lot of trouble with supermarkets being blackmailed by people who had poisoned things that were sitting on the shelves - the media were in a full-throttle frenzy about it.

    I could not suffer any vegetable with a blemish, I was terrified it had been injected with something...

    You try inspecting all your fruit and veg for hypodermic marks, when you're in the supermarket! :D

    :hug: Everybody's situation is a nightmare, with this.
  15. outdamnspot

    outdamnspot

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    oh, I wasn't trying to belittle your achievements at all and I apologize if it came across that way! I think I just self-defensively try to excuse myself, because I'm embarrassed that I've spent (on and off) about 3 years in therapy and never got anywhere.

    I know everyone's struggle with full-blown OCD is equally nightmarish .. I just personally find sometimes it's easier to resist a defined, physical action as opposed to mental reassurance because the latter can be so subtle and you take your mind with you everywhere. But I only speak for milder physical compulsions.

    again, sorry
    peggy-sue likes this.
  16. peggy-sue

    peggy-sue

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    :hug:

    no, no no! You were not belittling my problems, I'm very sorry you took it that way - :redface:

    I was trying to be a bit jokey about it, it came out the wrong way

    I thought I was commiserating with you about how unique you feel your problems are -
    because I felt exactly the same way about mine.

    This does not belittle either of us. It shows we have both been through the same thing.:love:

    I too felt it was easier to try to stick with my compulsions rather than face them, but I was working at the time, I needed to save my job, and the bully I was married to was going round the bend with me.

    I was much more forced, by external pressures, it would seem, into going along with the CBT and exposure.

    My next method of "coping" was to become an alcoholic; but that's another story of bad CBT.
  17. Valentijn

    Valentijn Activity Level: 3

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    outdamnspot - have you ever been able to get your neurotransmitter levels tested?
  18. SickOfSickness

    SickOfSickness Senior Member

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    Because you are sensitive to medications, consider over the counter supplement Lithium Orotate before a prescription Lithium.

    I'm glad you found this forum. Welcome.
    Little Bluestem likes this.
  19. outdamnspot

    outdamnspot

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    Oh, that's okay! I realized my post could be construed as a case of "my problems are worse than yours" after I posted it .. which wasn't my intention. I'm very, very happy (and a little envious) of anyone who finds success -- however modest -- with CBT.

    It's awful that you had a bullying mother.. and then husband on top of it! My heart goes out to you!

    I think obligations might force me to face the obsessions, or kill me, I donno .. and I can relate to the alcoholic thing, it's sadly easy to fall into the grip of nihilism when faced with OCD; I feel like I've betrayed every core value I tried to instigate before it set in at 18. I have an unconscious (and sometimes not so un-) death wish that can get the better of me.

    I know they say 'it's never too late', but having not worked .. studied .. done nothing since 21, and being a chronic overachiever before that, I just feel like it's all pointless, and it's so much harder without a decent family support structure.

    I'm going to see a support worker next week to find out if there's any loop holes with financial support.
  20. outdamnspot

    outdamnspot

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    No, I haven't .. is that the urinary test?

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