Advice needed---thank you so much

Discussion in 'Chit Chat' started by zenouchy, Oct 3, 2011.

  1. zenouchy

    zenouchy Member

    Hello All,

    Thank you so much for your help. I hope everyone is having the best day possible and that this topic isn't too heavy for the chit chat board.

    My mom is having hip replacement surgery this December. She lives in a neighboring state. She really wants me to come up there and cheer her up, caretake, and so does my dad. They know I have fibromyalgia and many other health challenges. They vacillate greatly between offering me support and then wanting to provide support and caretake-taking to them that is completely unrealistic.

    Not being able to help is not the same as being unwilling. It angers me that they are asking me to help when I simply can't because I want to help and would if I could. I tears me apart emotionally and I feel guilty even though I did nothing wrong. I have been chronically ill for at least ten years. How can they not understand this? In fact, me going up there would put my mom's care in further jeopardy because I would need so much assistance myself. Yes, I do feel well at times, like most of us do here, but I also need a lot of help and down time just to have those few hours of feeling okay. We all understand that here.

    My husband won a trip to Hawaii from work and I am going with him, but he will be going to many lengths to help me, and I will be spending much of the time resting on a beach or in a hotel room. My parents can't discern this huge difference. When I sound good on the telephone (I don't call when I'm exhausted because I don't want to depress them), they say, "oh, you're fine, come up here". I set as many boundaries as I can with my parents and explain endlessly my situation to them. However, it's brushed aside ("oh, you'll be fine") or listened to at that moment and the next phone call, it's back to the same thing "come up here".

    My dad is very hyper, anxious and screams a lot. This aggravates my health. Obviously, I know I won't visit. However, I'm very angry/upset that they don't listen, try to continually tug at my heart because they know I love them, try to continually put excessive guilt on me, and urge me to visit. They've also said they would come visit me at different times and have backed out. Of course this is fine for them. Other times they can be so sweet and supportive. The contrast between the two behaviors is unbelievable!

    Does anyone have any suggestions as to how I can handle the situation any better, let go of anger, feel okay with me so that I can make peace with them and myself and move on? My mom had hip replacement surgery on her other hip last year and I called, offered support, sent cards and flowers. I offered my best, loving support as I always do with what I can with challenging chronic illnesses that I never asked for. This is who I am, and they know that. Being maligned as someone who isn't quite good enough or offering enough and for them to not allow me to not take care of me properly is not right either. This is not a fun situation to be in and I know I'm a loving caring daughter who has done nothing wrong. How can I feel peaceful with myself with parents who lay it on so thick and manipulate like this?

    Thank you all so much again for your advice.


  2. zenouchy

    zenouchy Member

    Thank you both for your very sweet and supportive messages. They were so helpful to me.

    Diane, the hugs and shoulder of support are very comforting, thank you! I offer the same back to you and hope that all is well with you. Thank you too for the well wishes on Hawaii. I still can't believe my hubby qualified to go. I'm very proud of him; he works so hard and such long hours. The trip is in mid-January. I've always wanted to go and can't believe it's really happening. :)

    Jam, thank you for your wise perspective. It really helps because I sometimes get caught up in the dysfunction of my family and it starts to feel "normal". They should know I love and care already and the difference between wanting to help and being able to. There's a lot of crazy dysfunction in my family, and that's not my fault or problem either. My sister is also helping out AND my mom's sister and hubby will be visiting. My mom should be grateful for all of this and allow me to continue healing, knowing that I am doing what I can to be supportive and that I am sincere and loving as always, offering support in ways that I can. I realize that my parents are going to keep boundary-testing like little kids and that's something I'm going to have to deal with.

    Thanks again Diane and Jam. Have a great afternoon, friends.

    Love, Erika
  3. TwoCatDoctors

    TwoCatDoctors New Member

    i'm just getting back onto the board after being so sick so bear with me.

    I'm sorry you're having the problem you're having with family, but if you read articles and other boards, you will find that not all familes are supportive and there are families like yours that are outright manipulative, guilt inducing, think of themselves only, and will reduce themselves to yelling and screaming to get what they want (it's the basic tantrum).

    Sadly, you have given your family the power over you when you allow them to do it--when you actually hold your own power. You hold the almighty power of the telephone that when your family is on the phone and gets accusatory, yelling or screaming or refuse to listen to you say No that you have an ailment and they refuse to accept that--that you can say "it's time for me to get off the phone" and then you hang up on them right away.

    By doing that, you will gradually teach them the correct way to interact with you--that the only way they will get to talk to you for any extended time on the phone is be RESPECTFUL to you, respect that you have an illness, and respect that when you say NO that you mean NO, and there's no yelling or screaming, manipulating or guilt inducing--that is no longer the way to converse with you otherwise you hang up.

    I STRONGLY SUGGEST YOU ALSO give up regularly explaining your ailment because they haven't listened to your problems because their history is to guilt and manipulate you into doing what they want so they never really listened to your problems.

    You should not feel guilt because you have an illness. Many of us are unable to do what we used to do and that's okay and is not a crime and it doesn't make you a bad person. we've all had to adjust our lives and what we do in order to accommodate our illnesses. It's our only way of getting by. I'm just pleased that we get by and that we manage through the worst times of our ailments. BUT YOUR HEALTH TAKES PRIORITY OVER YOUR PARENTS.

    If your parent truly needs care after a surgery (which might include being lifted up from a bed or a chair which you cannot do), they need actual trained nurse-caregivers who can do that and your parents should speak to their doctor and arrange care through their surgeon and health plan and your parent may even need to go directly into a rehab facility before returning home if they need a caregiver. So your parents need to talk to the surgeon about caregivers under their health plan and let the doctor explain what they will require and set it up. My city also offers seniors that will come in at a lower price to cook meals and help out, but not lift people out of bed or chairs or anything like that.

    Remember, it only works when you say NO and hang up.
    [This Message was Edited on 10/03/2011]
  4. zenouchy

    zenouchy Member

    I appreciate your input and hope that you are feeling much better with each passing day. Do you know where these articles are on our website? I would like to read them. These dynamics sometimes have more layers than can be written about in a few paragraphs. I am highly assertive and do not do anything that I can't or am unable to do. I like your idea of not explaining my illness anymore. However, do you have a suggestion if my dad directly asks me? He's a doctor and sometimes wants to "help". Sometimes he actually does so, so it's quite confusing.

    Also, my parents do listen and offer true support, which adds to my confusion. Also, if they say they understand but ask me again to visit, that's truly confusing for me. It's not quite as black and white as your write about; that doesn't mean it isn't helpful though.

    My dad has been a high anxiety screamer since I was a child. I learned long ago not to give into that. I continue to set boundaries and do not give in. I won't be visiting them during her surgery and have told them that a few times at least. The frustration is that the boundaries are not listened to and they haven't "learned". I have also hung up the phone on them if my dad screams or my mom won't listen and over pushes. I do have a hard time hanging up if they ask gently. I wish they would learn and that it wouldn't continue so that I wouldn't feel drained.

    Thank you very much for your help and taking the time to write, especially when you are still recuperating, I really appreciate it.



    [This Message was Edited on 10/03/2011]
  5. zenouchy

    zenouchy Member

    Sounds like HI will be amazing!! Glad you've been able to go and enjoy yourself too. Yes, first trip and I've been wanting to go for decades. Can't wait. We're going to Oahu. Pinch me, it still doesn't seem real. Not looking forward to the flights, but I'll deal.

    P.S. Yes, doesn't it seem like my Mom has plenty of help? Hmmm. ;)
  6. TwoCatDoctors

    TwoCatDoctors New Member

    It's up to you to define what you are willing to accept. When your parents fail to accept your "no," then aren't they really discredting and doubting your word and doubting if you are really ill? The articles below are very good on guilt, co-dependency, dsyfunctionial families, etc.)

    Your Dad will find a book on Fibro IF HE IS TRULY INTERESTED IN FINDING OUT ABOUT IT, so you don't have to continuously be explaining your ailment. You will see your parents either accept or don't accept you have fibro. The truth is that explaining you have fibro to them 10 more times sadly won't convince them you have it and what it does to you.

    When I came down with systemic lupus and then malar lupus, my Dad (in his 80's) was very interested and wanted me to find info on the computer at a level he could understand that I could mail to him so he could read and try to get a handle on it. I did mail it and he then understood and never questioned except that he was very worried I would die too young and many years before him. That's the reaction of someone who understands and truly gets invisible illnesses--that's not the reaction you have received and I'm sorry you haven't gotten that reaction.

    Here are some good articles for you to read. (read it all the way down for many opinions) (read all about manipulation) (here's a step by step that I think is too involved and too much chance for arguing, but read it anyway to see what you think) (an excellent article on co-dependency, which may factor into some of the problems) (very good article on guilt, what causes it, and how it is activated by parents in childhood).

    [This Message was Edited on 10/03/2011]
  7. zenouchy

    zenouchy Member

    I will look at those articles and appreciate it so much. Hope you feel better soon. P.S. I just hung up on my mom in the nicest way I could. Well, if I can't help during surgery, can I come during Thanksgiving?

    I can't deal with my Dad and it's still too close to our other trip. Of course she'll never understand. I told her she was putting way too much pressure on me and that I'm trying to feel better. She asked me what my health problems were "again" and "gee, I know you have a little fatigue and had an ocular migraine last week". Good lord, after ten years, if she hasn't figured it out, this is pretty pathetic. I told her that I've told her numerous times what my health challenges are and didn't feel like explaining it to her once more and that we could talk again another time. And that was that.

  8. TwoCatDoctors

    TwoCatDoctors New Member

    I revised my reply above with the articles, so re-read that.

    You did very well during the phone call to get off the call. Truthfully, your Mom doesn't accept that you have Fibro and unfortunately people have family members that don't believe Fibro even exists. You now know you will not make her a believer, so don't try.

    If your Mom gets irritating and you get off the phone, that's a huge step in the right direction--YOU DID SO WELL AND PAT YOURSELF ON THE BACK. YOU GO GIRL
  9. fight4acure

    fight4acure Member


    Wow! When I get frustrated about people not understanding my illness, I'm not given others to take care of... that's really darn frustrating!!!!

    Sounds like you know already what must be done. Don't feel guilty for deciding what's best for the situation and what's best for you...

    But, while you're deciding, I'll go with your hubby to Hawaii, but then he can vacation in his own hotel room, I'll be on the other beach where the sun goes down, oh wait, that's every where in Hawaii!

    Realize you need to take care of yourself first, and it's not selfish, and if they don't understand then it's too darn bad!

    Fight ;)
  10. zenouchy

    zenouchy Member

    I really appreciate your help and taking so much time to help me. Thanks too for your encouragement on the polite hanging up. Yep, I don't take the BS! I thought that because of their advanced age, they forgot things, but I realize that they can look up info and I've offered to send it too. I sometimes get trapped in the "nobody's perfect" and because they can be so loving, I need to forgive. This pattern is madness though. She started belittling my health challenges, and I won't tolerate it. "Oh, it's just a little fatigue". Nope, nonsense.

    I'm sorry this is long. Yes, I understand what you are saying. My mom tells me she doesn't want to read the information about fibro because it hurts her too much emotionally. She tells me that she feels what I feel and that she hurts when I hurt. I believe this to be true. My family of origin operates almost on 100% emotion. Both parents tell me to visit and that they want me to see doctors there that can help.

    They seem really intent on helping me there and really finding any way possible to have me visit knowing that it's hard to visit or not accepting that it's hard to visit. THAT'S what's so strange. They are RELENTLESS in finding any possible way for me to visit them. WHY? Of course they want to see me. I do know that. However, it's much easier on them for me to visit them than for them to visit me. At age 69, my dad still works as a radiologist with many health problems with a very heavy work load. This is his choice. He does support my sister who has chronic health problems, however, they don't have to live the lifestyle that they do; it has plenty of extra perks. It's their perfectionistic Type A (I call it AAA) personality. My dad wants to control everyone and now my mom wants to do it to. It's completely uncalled for.

    They want me to conveniently fit in to what works best for them and to support their whims. If they can push, push, and push me some more to visit, well, that works great for them. They should be adult enough to listen when I say I can't or am not sure. I don't push them like that. The relentless pressure isn't right for anyone, whether or not a person has health challenges or not. In the meantime, they can say they're coming to visit and back out with the excuse that THEY have health challenges or even MONEY problems which is a total lie (trust me, they don't at all). I'm even caring and supportive when they back out b/c I think it's best to be supportive of people, even though I think they should have realized in the first place that they couldn't visit. Of course they aren't supportive of me when I'm upfront about not being up for a visit. They want to just run the show and apply their own arbitrary rules which they can break but make me follow; it's so childish. They support when it's convenient for their purposes although I do know that at times their support is care and not fit to any other purpose. That's where confusion on my part comes in. Plus, I need support. No matter though; it's too wishy washy and too much madness. I don't need it.

    Anyway, again, I'm sorry to ramble. I do see everything you are saying and deep down have known this all along. I know that they don't completely deny my fibro; she often can't handle it emotionally b/c it's too painful for her, but I think in essence it's probably splitting hairs with what you are saying. I will continue to hang up on her if necessary and have done so in the past as well. It's a draining process for me though. She's so convinced she's right!! I feel rejected just when I need support; none of us should have to go through this.

    Thank you so much again for all of your help. I hope you are continuing to feel better.



    [This Message was Edited on 10/04/2011]
  11. Mikie

    Mikie Moderator

    Our parents held over us when were growing up and trying to understand the world. That power set up patterns of behavior which we work our entire lives trying to undo. The parent says something and it sets us up for those old patterns. Our parents/loved ones won't change so it's up to us to do the heavy lifting in setting adult behavior patterns/boundaries.

    One thing you might want to consider is to write them a letter and explain how it affects you when they are inconsistent in their support and their unrealistic expectations, considering that you have a disability. Or, if you think they will listen, tell them once again that it simply has to stop if they want to have a relationship with you. If they continue to try their manipulations, just tell them you cannot, and will not, talk with them until they stop it. They will likely act as though they are sweet, loving parents with an ungrateful daughter. This is how a child behaves when he doesn't get his way.

    You are being put through the wringer between the support mixed with the screaming tantrums. You don't have to put up with it but if you make a stand, prepare for it to get worse initially and prepare for them to prefer their games to having a loving, mature relationship with you. We sometimes have to eliminate toxic relationships in our lives in order to survive. This has gone on a long time and even if you can make headway, it will take a long time for the games to stop. They may never stop and you will have a decision to make.

    Tell your parents that they have to make arrangements for help with your Mom's surgery--period!

    BTW, enjoy Hawaii. It's one of the best places I know to relax and heal. You deserve it. Good luck with everything. I highly recommend therapy if it is available. It will help you as you deal with this sensitive problem. Good luck.

    Love, Mikie
  12. zenouchy

    zenouchy Member

    Thank you so much for your very supportive message and wonderful hugs! I appreciate it so much. Indeed, it really is frustrating. Yes, I'm understanding now that I shouldn't feel guilty. I know it logically. It's taking some time though for it to really sink in emotionally and feel peaceful about it.

    My hubby is a quirky goofball. You may not want to go with him to HI. Ha ha!! He's a keeper; I'm lucky to have him. ;) I love your humor! I've been wanting to go to HI since I was a teenager and can't wait to go.

    Thanks so much Fight.

    Have a happy/feel good day,

  13. zenouchy

    zenouchy Member

    Hi Mikie,

    Thank you so much for your warm and supportive message. You are always so helpful and insightful. I think you're right. It's heavy-lifting time. My dad can be a big, intimidating bully who is so anxious and has his own demons. My mom enables it and now wants her own controlling power. Combine that with many good qualities they have---love and generosity that they've always shown over the years, and it's a dangerous combination of them thinking they can keep controlling me. YUCK.

    I just need to heal and not deal with the constant pressure of visiting. Now they've supposedly accepted I can't be there for her surgery, but they want us to visit for Thanksgiving. I have to have time to relax and heal. I do so much at home and have so many doctor appts all the time. The packing and preparing for a big trip is just going to add the the pressure. Another trip before HI would add so much extra stress, especially with a father who is a screaming hyper spaz. Of course when I get back from HI, the pressure will be ever-worse to visit. "You went to HI and were healthy enough, now you HAVE to visit." It's ridiculous when they've cancelled trips here.

    The letter-writing and talking to them I think will have to be something to consider down the road. The talking part never works. I may have to work up to the letter part. It feels too potentially final and confrontational at this moment. I'm very prepared not to talk to my mom for awhile. She's being a child. The part of all of this that makes no sense (the most anyway) is how they don't want me to do what's best for me and take care of myself in the best possible way. I guess they don't know how to do that.

    It feels like a Mexican standoff a little bit, but so be it. Therapy would be an excellent idea if I didn't have so many other doctors' appts. Sometimes I have a hard time even getting to a doc appt. b/c of my health. I went to therapy once and had to cancel some of the appts and the therapist wanted to earn a living and fill the time slots.

    Thank you for the well wishes on HI. It will be a wonderful, healing balm indeed. I'm looking forward to it. Thank you again for all of your excellent help and support.

    Have a happy, healthy day my friend.

    Love, Erika
  14. fight4acure

    fight4acure Member

    A quirky goofball? Those type are the best to hang around with, especially when having fun!!!

    I myself am a quirky goofball, at least when I'm not in really severe pain.

    The thing about taking care of yourself is knowing your limitations. I should know best because I overdo it all the time, lmao! It's like I can't do enough when I am able to do one thing, I say, hey maybe I can do more!!! Then I pay for it, but at least it got done.

    Are you going to be taking a cam to HI? Or is that a given with everyone who goes there? How I'd love to see more pics of my favorite state... the state of relaxation!

    Fight ;)
  15. Granniluvsu

    Granniluvsu Well-Known Member

    I saw your post up and didn't have the time to post so I didn't post back. However, I really still don't have the time as i need to get off very soon but I did want to pop in and tell you that you just have to do what you think is best for YOU.

    I had something similar happy to me, my brother and his wife wanted to take turns with my mom and also come and help more with her when she broke her second hip and became worse. They live in NY and we in TX. I have FM, and very high b/p, not to mention other things. I was telling them for years about my condition but I think they thought I was faking. Of course no one had heard much about FM - yeah even some docs.

    I told them no that I couldn't help and I know that they got really upset with me as I hardly heard from them much after that. When I had told them my problem at that time and also told them about my grandson having leukemia in a christmas letter and one daughter getting a divorce, I hear not a word about ietter of them to me. This was about 9-10 years ago. I think my cousin doctor at one time talked to them abou tit cause all of a sudden they acted at least a little better towards me. I even went to see them this summer for a week by myself. I jmay never see them again as we had stopped making trips back and forth for a varienty of reasons. I still feel guilty not being able to really help out. We came up to see her a week or two before she died and then went to her funeral.

    Yes, I probably will always feel some guilt about not being there when she died and being abot to helpo more but with my constant pain and spiking b/p that was not a good mixture.

    You just need to do what YOU can and what is best for you. You have YOUR health to think about . Sorry I didn't have the time to read all these posts and answers to your questions. You probably have had some answers similar to mine.

    Thinking about you hon and hope all goes well. Let us know what you decide to do.nnSorry I was so late in sending this !

  16. zenouchy

    zenouchy Member

    Thank you so much for your very sweet post. Please, no apologies at all for anything. You are such a dear and so kind to write me. I totally understand you are busy. You need to take care of yourself too, and we all do here. Thank you for sharing your story with me also. I'm so sorry you had to experience that and you didn't deserve it one bit. It's disheartening that this same or similar situation happens to so many of us when we all need to be loved and supported.

    You have nothing to feel guilty about either. We have to take care of ourselves. We are useless if we aren't healthy and if we did as others requested of us when it's completely unrealistic, we would feel even worse. (I can be good at giving at advice but not taking my own. I'm working on it though. :)) It's not our fault if people don't understand or accept reality. It's very frustrating at times, but true. Sending you big hugs and warm, healing thoughts.

    Love, Erika
  17. zenouchy

    zenouchy Member

    Yes, I think it will be lots of fun. Once my hubby loosens up, we'll have a great time. He works tons of hours, but when chills, I think it will be great! So sorry about your severe pain. Is this happening a lot? I'll be happy to offer some suggestions if you want them. I don't know if you've gotten them many times and are tired of hearing of them, but let me know if you are interested. It's hard to be in good spirits when we feel horrible. I love quirky goofballs. I bet you're lots of fun to be around.

    Yes, I overdo it sometimes just like you; I'm trying very hard to stop it, but it's not easy. I tend to want to get stuff done and attack my to-do list. My hubby has so much to do at work, so I want to help out at home so he doesn't have as many things to do here. We both have too many things to do. Tough one, but it happens.

    Fatigue is my toughest issue, but I just started taking Co-Q10 in the form of Ubiquinol, a purer form that's supposed to be better absorbed in the body. It's supposed to help with fatigue a lot (not to mention heart health). I've only been taking it a week and am starting to wonder if it's helping some. Even if it's a placebo effect, that's fine with me too! Anything to help the darn fatigue! :)

    Thank you for reminding me to take a camera to HI. I just started my travel check list and that is something I forgot to write down, so I just added that after I saw your post. Thanks!! Gotta take lots of pics, right? I still can't believe I'm going. I just tried on some swimsuits that are a few years old and they still fit. Woo hoo!

    I hope you are feeling well today. Don't overdo it! Erika's orders. :)

    Love, Zen
  18. Granniluvsu

    Granniluvsu Well-Known Member

    Let me know if you think that Ubiquinol seems to be helping you. I take 400 mg of CoQ10 (forget the brand from Sams). My NRG still stinks but who knows how I would feel without it.

    DH needs the puter so gotta go,
  19. zenouchy

    zenouchy Member

    Yes, I'll be more than happy to let you know how the Ubiquinol goes. I wanted to let you know that I read in a few places (here on Pro Health and also Mercola's website) they recommended taking Ubiquinol instead of Co-Q10 when you're over 40. It's apparently more powerful, absorbs better and stays in the bloodstream longer than the regular form of CO-Q 10. Just passing along the info in case it helps. :) Have a great evening and feel good.

    Love, Erika

  20. fight4acure

    fight4acure Member

    I'm handling my pain okay during the warmer months, but I do live in the frozen tundra. Winter is horrible! My tendons tense up so much and there's nothing I can do for them other than to get massages and use water therapy, like hot baths, showers, and swimming in semi-warm pools.

    I take Lyrica only now. I dropped all of the other meds, except allergy meds, and sometimes my inhalers, when needed. Quit smoking minus having one or two once in a while, which is awesome being that I smoked over one pack a day.

    I'm glad Co-Q10 works for you! Dr. Oz is a gem, isn't he? He mentioned that often on TV.

    Me, not overdo it? You.... don't know who you're talking to. One day or two days I'm laid up on the couch until I can't stand it anymore. The next day I'm trying to catch up on everything. I need to get a plan going again of exercise because my muscles are going to waste. I've lost so much weight, but now I'm average now. 145 lbs now, compared to 190. Now my skin is loose and muscles need toning again.

    I'll go to HI with you and we can swim in the ocean! I'd like to learn how to surf, not that my sore legs could last too long. Did you know they have the surf board for river and lake surfing now? Now I could do that if I could stand up for long. Gotta build my muscles, go for more bike rides, walk more... etc.

    Have much fun and don't forget your sun screen, allergy meds, emergency jelly-fish stinger, shark repellant, Ozone zapper cream, and ice cream freezing gun. Oh, and be careful of those pesky pengys! = : D

    Fight ;)