Valet or Self Park?? VENT

Discussion in 'Fibromyalgia Main Forum' started by marilynb, Mar 12, 2007.

  1. marilynb

    marilynb New Member

    Yesterday, we went to the Gaylord Texan for our son's 29th birthday. Of course my husband believes if I just get more exercise & walk more, I will be better, so he passes Valet parking up & goes to the parking garage.

    So when our 28 year old daughter, her boyfriend & her daughter arrives, they Valet. She says they always Valet!

    Our son arrives with his girlfriend & they Valet.

    This is not an issue of money, because we ate at one of the restaurants there & they validate your ticket either way.

    My husband had to go there an hour early also, so we could walk around. Then after dinner, we had to walk again! I did want to see everything, but he ran me around earlier in the day, & I was kinda tired already & he knew that.

    When is my husband going to "GET IT"?????

    I had an 8:30 appt this morning, that was an hour away (with morning traffic) & then go to work after that.
    Well, you guessed it... I did not make it to either one.
    I stayed in bed all day.

    I don't know what else to do, for him to understand. He thinks I need to be moving constantly except for sleeping.
    (Which by the way I let him know, it is not a restful sleep) He knows this, because he see's me get up every morning, very slowly & stiffly. He know's mornings are my worst time, so why the heck does he think I sleep well at night??

    BIG QUESTION...
    How long did it take those close to you to understand??
    It's like we are going in circles here. I know things run in cycles & I guess he is just back to square one again.

    HELP,
    Marilyn
  2. Febricula

    Febricula New Member

    I no longer expect understanding. What I do expect is accommodation.

    I let people know exactly what I'm capable of and what I plan on doing. If they try to push my limits, I simply refuse, nicely and politely but without any apologies.

    And if people have a problem with that, it's *their* problem and not mine!

    It has taken me years to adopt this attitude, but it's made my life infinitely easier. In the past, I tended to adopt a martyr attitude. I pushed myself harder than I should, hoping that other people would realize how much I was sacrificing. The problem is that other people may not necessarily notice or care about our pain. Even worse, they may think that just because we pushed ourselves too hard one day, that means we should be capable of it everyday.

    Also, I used to spend a lot of time trying to convince people who simply didn't get it. Now, I don't waste time on whether they get it or not, or whether they think I ought to be doing more than I do, or something other than I do, etc. I simply tell them what the facts are and what I'm going to do about it (i.e. REST, have limited social activities, not drink alcohol, etc.). I refuse to get into arguments or debates about the nature of my illness, because it automatically puts me on the defensive, and I have nothing to apologize for -- my being ill and needing to take care of myself is not my fault.

    So I've found that giving people material from the internet doesn't matter because people will insist that I can find anything on the internet. Or they will refuse to read it regardless of how reliable the source is. Or they'll tell me that of course the doctor agrees with me because "he's on your side." Or that (I still can't believe this one), the American Psychological Association is "just wrong" (this was from an argument about depression, many years ago).

    Hence my new motto: Never apologize, never explain!

    Learning to say "no" and refusing to feel guilty for things beyond my control is something I work on everyday. It goes against everything I learned growing up, but it's really worth it.

    hugs and sympathy,
    febricula
  3. pw7575

    pw7575 New Member

    My boyfriend and family are very understanding of my CFS. My boyfriend has understood from day one. Many times he even tells ME when I am trying to do too much. He can even pin point the minute that I start going down hill and tries to accomodate me. I hope his understanding continues for as long as I am ill.

    My father has been understanding since I first became ill but I think he didn't understand quite as much as others for a while. Now I think he gets it.

    Not sure if my mom or other family explained things to him that he wasn't sure about or if he figured it out on his own by seeing me go through it over the years.

    Also the last year he hasn't been feeling very well himself (doctors aren't sure why yet). He is having dizziness, brain fog and fatigue so I think now he understands a bit more of how I feel every day.

    I don't know what it was but now my dad seems to get it much more than he used to.

    I guess for some people it just isn't easy to understand this sort of thing. Maybe some people need to be told what is happening and exactly how you feel. Have you sat down with your husband and explained your illness to him? Maybe you could try that or print out some info on your illness or maybe take him to doctors appointments with you.

    If you have tried all of this and it still doesn't work than he just may not be able to understand it. It is unfortunate but we see it alot on this board.

    If he just can't seem to grasp your illness than I think you will have to do what Febricula recommended. Just set your limits and do what YOU need to do for yourself. Learn to say NO and anyone who can't understand that will just have to deal with it.

    I hope your husband can finally understand this. It would definitely make things easier for you.

    I am sorry you have to stuggle with this. I hope things get better for you!

    Take Care,
    Pam
  4. marilynb

    marilynb New Member

    Thank you for the input, Febricula & Pam.

    I have tried the 'no' thing & I think sometimes my husband takes it personal. He knows I have a lot of health issues. (Not just FM) I also am having a sinus issue & an eye problem at the moment. I am trying not to say too much about being in pain or not seeing well, because I know he knows. I just figured he gets tired of hearing it, so I say nothing & try to keep going.

    I hope I am making sense. I just woke up & my thoughts seem scattered.

    I was once give a paper on the Family Cycle Pattern of Emotions:

    Start of Pain.
    Have hope for a cure.
    Feel resentment & anger about the situation.
    Sense of loss of control.
    Take out frustrations on person in pain.
    Withdraw. Withhold affection.
    Feel guilty.
    Feel worried & helpless when pain worsens.

    And then it starts all over again.

    I try to remember this, but it's hard.

    Thanks again for the advice.

    Marilyn
  5. mary124

    mary124 New Member

    i too have been very lucky. I don't have fibro but I have IC which in itself is very painful! and a few other medical problems. My husband, once he realized what I had he began to understood my limitations. he really doesn't like listening to me complain a lot, so I don't really tell him how tired and how much pain I'm in, but when he looks at me, he realizes it.
  6. krisfromaz

    krisfromaz New Member

    My husband is a great guy. No doubt. But sometimes I feel like it's a competition with him. He works hard. Almost to the point of being a workaholic. He comes home after a 12 hour day:

    Him: How are you?
    Me: OK, but I'm really tired and sore. (we just moved and I have been unpacking the house)

    Him: Me too. I had meetings and teleconferences all day. What did you do to be so tired and sore?

    What he doesn't 'get' - even though he says he does:

    Being tired and "sore" from being mentally drained all day is not the same as MY tired and sore. I normally don't do anything that is too strenuous because I pay for it the next 2 days. My tired and sore is my everyday state, whether I spend the day on the couch reading, or unpacking boxes. It's just the degree that changes. He thinks I 'do' something to become that way.

    People don't always get it, even if they say they do. Unless they experience it themselves, it's no use.
  7. TerryS

    TerryS Member

    Marilyn:

    I could tell that my husband didn't really believe me...thought I was just lazy (although he didn't say it, you can just tell those things).

    It wasn't until I was diagnosed with an autoimmune liver disorder (and he thought I was going to die in the next five years) that he finally took me seriously. He's totally on board now also with the CFS/FM.

    TerryS
  8. pw7575

    pw7575 New Member

    The cycle of emotions is understandable and it could be what is happening. Just be careful to not assume that that is what is going on. Make sure you KNOW if it is just him going through these emotions or him actually not understanding the illness. There is a big difference.

    Have you seen him go through all of those stages of emotions? Have there been times where he has understood your limitations and been supportive and caring etc? If not than it is probably not so much the cycle of emotions but just that he doesn't quite understand the illness.

    Be sure to try and figure this out because you don't want to assume that he is just going through the cycle of emotions if he actually doesn't understand. Because if he doesn't understand than you would want to try to help him with that.

    Also I know that you don't want to complain about how you feel (none of us do) BUT there is a difference in complaining and explaining. Complaining all the time and explaining something once or from time to time are two different things.

    You can explain to him the illness and how you feel if you think he doesn't understand. That is perfectly ok and probably necessary.

    Some people are not capable of understanding certain things unless you DO explain it and help them to understand. Don't assume that he understands how you are feeling because he SEES you in pain or not feeling well.

    Always be VERY careful about assuming that people know what you are thinking and how you are feeling just because they are there and see you or you have sort of told them in the past. People are not mind readers and may from time to time need to have things explained to them. ESPECIALLY if it is something they have a hard time understanding.

    Make sure to tell your husband that you missed your appointment and work because you did too much walking around and too much activity the day before. Tell him it was too much for you and you can't handle a lot.

    If you do have to set limits for yourself and tell him no than he should NOT take that personally if he truely understands your illness. He would know that you are saying no because you are ill not because it is something against him.

    I really do think it might help you both to actually sit down and really talk about all of this. Find out what he si thinking and feeling and tell him what you are thinking and feeling.

    Tell him all about your illness and exactly how you feel and what happens to your body and what your limitations are. Give him examples of things that have happened to you ie the other day when you did too much and missed your appointment and work the next day.

    I really think he just needs to see/hear all of that and may then understand better what your limitations are. Some people are just not the types who can sense things. Some just need to be told in order to get it.

    What a wonderful person you are that you are having a hard time but still trying to understand your husbands emotions and what he is going through. That is a very good thing and you should definitely keep doing that. I just don't want you to shoot yourself in the foot by chalking this all up to his emotions if what he actually needs is for you to explain all of this to him.

    Let him know that you understand how difficult this is for him as well but also explain to him how the illness works. Give him all of the info he needs to be helpful and understanding and tell him that when you do have to say no to something that it is NOT anything personal against him.

    I hope things work out for you!

    Take Care,
    Pam
  9. Adl123

    Adl123 New Member

    I'm so sorry you are going through this. I don't think anyone, whether husband,realtive, friend or stranger, has a right to be so inconsiderate. I would venture to guess that your illness makes your husband feel powerless, and so he is in denial.

    I'm not as nice as you. I would have asked for valet parking before we left. If he said no, I would have driven myself, if possible. I would not have done the walking. You don't want to get as bad as I am. After I've walked for about 60 feet, I can no longer stand upright. With every step, I lean forward more, until I'm at about a 90 degree angle, and I look like the witch in Snow White!

    I knowit is really hard when a person close to us just doesn't get it. I hope this will resolve itself. Have you tried giving hiim the "spoons" paper? It might help him understand.

    Good luck to you, and a big hug.
    Terry



    [This Message was Edited on 03/15/2007]