Serious pressure to get well, does me in

Discussion in 'Fibromyalgia Main Forum' started by JaciBart, Jul 13, 2003.

  1. JaciBart

    JaciBart Member

    Does anyone else get so much pressure from everyone around them to get well???

    I get these not so subtle comments all the time from my in laws that "as soon as I get well and back to work" and I swear I CAN ACCEPT THIS ILLNESS, I HAVE COME TO TERMS WITH IT and my hubby is really starting to see too that IF I ever have more than 2 good days in a row it is a miracle, I have made a lot of improvement in a lot of areas but I am nowhere near well.

    My fibro has turned into CFS in the past few mo and I sometimes have less pain but terrible fatigue, I cannot keep my eyes open sometimes and I end up sleeping until 2 or 3 pm a lot of days.

    We are so hurting financially and we recently humbled ourselves and asked for help financially from inlaws who can afford to help and all we basically got was a lecture about managing our money, we have lost my income for over a yr now and we are getting seriously close to losing my vehicle and we are afraid of ruining our credit and all we get is this patronizing undertone of "well, as soon as Jaci can get back to work you will be ok" like that is gonna happen. I feel like they just think I am lazy and how dare I put Scott thru all this horrible financial trouble like I fricking asked for this.

    I have tried to hard to come to terms and I honestly am doing well with that and every once in while my self esteem will start to improve and I talk to one of my inlaws and WHAM!!!!! I again get reminded "so and so has this and he works" and "so and so got addicted to her pain meds and look at her now, she has lost everything" and "so & so has MS and she works".

    It is the single most hurtful thing that could possibly happen to me, it cuts so very deep.

    I had a career I loved too as most of us had here and I never imagined myself not being able to work but the fact is I go thru a change about every hour in the day as far as what hurts, what I feel.

    I know you all can relate to this and there must be some wise thing to say to these people besides "Yes, I wish I had MS or Parkinsons or Lupus or cancer or ANYTHING besides this illness so that you would get it thru your stupid head that I am doing the best I can and just to be able to cook a great meal for prescious Scott who does not deserve this and to be able to rub his feet at night and keep up the housework is more than a lot of people can do"


    Help me please,
    Jaci
  2. kerrymygirl

    kerrymygirl New Member

    I can relate. I know some people are good at having a quick retort to people like that. I always think of it to late. Even when I think I am prepared I never come out with the response that I thought of earlier.

    We need to think if they were saying this to our child or loved one. I am so protective of people I care about.

    I have coped with others who I do not care about that roll their eyes or give that look when they ask am I working yet?
    Then add you are looking good..

    When it comes to my family I still find myself either avoiding the subject or trying to defend my illness.

    I am know reading some peoples reply`s here that they maybe of better help.

    All I can do is support and defend you from afar. I do know completely what you mean. It gets so frustrating.

    I guess we should just ask them what is acceptable to them and say, Yep that is why I can not work!!!!

    I understand why they do not understand, would appreciate the same consideration in return!!!!!

    Take Care/ One day they will have to eat their nasty thoughts and words. I just don`t know if I have that long.
  3. PatPalmer

    PatPalmer New Member

    This disease really stinks...

    Yes, if it had a label like *cancer* it would make so much difference to peoples attitudes.
    There are one or two articles I can think of, you could print out to give them to read - but would they be interested enough to read them?

    CFS/FM doesn`t kill (like a living death for some) so will never achieve the same status.
    What goes wrong is only now being understood by researchers in this field.

    The system is basically malfunctioning due to viral/bacterial infection.
    The central nervous system is all out of sorts, the immune system has gone haywire, and the blood is pretty clogged up too.

    Time for a spring clean...

    I liken this to my sink & dish cloth, when its getting grimy, stained & smelly - they`re bleached...

    Your body is full of toxin build up and not getting the right ingredients to help it run efficiently.

    To save me running through the plan for self help, please read my reply to Soulstice under her Most effective treatment post, I hope this helps you some.

    Love Pat.
    [This Message was Edited on 07/14/2003]
  4. Hippen

    Hippen New Member

    Hi Jaci, Yes I know what you are going through is very difficult!!! I am a 35 year old female with Fibro/CFS/CFIDS. Like you, my CFS is the strongest of the two. I know that you want to get along with your inlaws and I hope that is possible after you educate them about this disease. You need to explain to them that this is not the "FLU" that one can just get over like that. Now I wonder how they would act if Scott were the one with this instead of you??????? OH, poor Scott......Jaci you will just have to work harder now that scott is so sick...YIKES !!!! Marriage is through sickness and through health...marriage does not include pleasing your inlaws by recovering from a major disease over night. You are in a tough situation because it is hard to be in the middle between Scott and his parents. Does Scott understand your situation? I hate to say this but, you may have to do without your second car and any extras that you do not need to avoid asking his parents for ANYTHING!!! All of us with this disease have lost somethings in our lives...our jobs, our hobbies, our friends and some family . You have enough to deal with keeping yourself sane and your marriage together...all this while trying to stay healthy and awake...LOL. I laugh because we have to laugh about this sometimes to avoid crying sweetie. I have an 8 year old daughter and I have had this disease for 8 years...so while I was so sick most of the time...I lost many possible memories with my daughter's younger years. I was often to sick to go to the park to play etc. I cried the other day...thinking about how much of her life I just slept away. Do what you can Jaci...follow pat's wellness plan from the post above. Do try the OLE it is the only thing I have tried so far that has given me any measurable relief. You can't spend the rest of your life trying to please the inlaws......just can't happen. The least input and hold they have on you ...the better. You need to clean out all the negative things in your life and start fresh. I hope you and your husband can communicate openly about this situation...you two need to figure out a plan that will work financially and emotionally. I wish you the best of luck...you are not alone !!! More hugs for you...Hippen
  5. franners

    franners New Member

    Honey Ron's one friend told him all of this was in my head.. So one day Honey Ron, when I could only lay down for the day, said "I wish you would get out of this depressed shit and move on!" Oh, I was PIS#ED!!! I know I had to have demonic like eyes... Oh, and somewhere he mentioned "mental".. So I rose off the bed and let him have it soooo friggen bad.. And then stopped all of a sudden, looked at him and smiled and layed back down to watch tv..I have all sorts of literature I have found and picked up and ordered off of different sites laying around.. All he has to do is pick one up and read it..
    I agree about educating their as#es, but they have to want to learn.. Rustle up a few literature, pamplets and take them over there and be as sweet as you possibly can and tell them if they have questions that they should read them.. You are suppose to have support from your family. You can only try to educate them, but they have to want to be educated.. I would also mention that and that YOU love them.. You are not kissing as$, be dignified. Do not take lip, just give the info and excuse yourself and leave.. With them being your inlaws it makes it rough on your old man and could probably cause friction between ya'all if not now, then when one of them is passed.. I went through this with my own mother.. I know in my heart I have made every effort.. BUT if it is a friend, lover,or aquaintence lock and load both barrels and let them have it if they wont let themselves be educated.. And remind them that if this is just being "mentally ill" just think of what all you can get away with.. They will either laugh along with you or leave very cautiously.. Sometimes I find this the funniest thing to do and get a laugh at it, and if Honey Ron and I are going at it and someone comes to the door I don't care for I tell them to go away I'm having a mental moment and shut the door.. I hope nothing ever happens to Honey Ron that is questionable.. I love him very much and would never hurt him for anything in this world (or anyone else).
    i believe it is OUR job to educate this generation so the next generation with Fibro might live a more supportive and happier life.. But hopefully they fix this first..
  6. pam_d

    pam_d New Member

    I'm sorry you have to go through this, it takes everything we have inside us to keep any kind of self esteem with these DDs anyway, without having to deal with negativity, subtle or otherwise, from people who should want to love & accept you.

    My mother-in-law is long deceased, but I have a father-in-law, brother- & sister-in law still, and I have been blessed in that they not only accept me as is, but---even more than my own family---try to read & learn about fibro so that they can talk intelligently about it & check on how I'm doing, while actually knowing what the answers I give mean. My brother-in-law, especially, e-mails regularly to check on me; he visits, but always checks to see if it is a "flare" time for me, & tries to make as little work as possible for me. Part of why they are so good, though, is they actually READ information I gave them about fibro.

    I'm wondering if your in-laws would take the time to read a short but descriptive primer on fibro? It's easier for them right now to make judgements on your fitness to work, when they don't really understand the first thing about this illness----and let's face it, if many of our doctors don't even understand this illness, how can we assume others will (although, I agree, it would be nice for our friends & relatives to take our description of it at face value----just because they love us, & believe us!!) Aren't you seeing Madwolf periodically as a healthcare provider? I wonder if he has, because he deals with so very many FM/CFS patients, one piece of literature he feels is most helpful in describing this DD & the way if affects our lives? And if your in-laws would read it?

    I think it's easy to say "get these toxic people out of your life!", but very tough to do, when you love your husband & these people are connected to him forever----and I know you don't want to make him feel as if he has to choose between you & them. That's why I'm hoping there's a way to educate them, maybe subtly (after all, their comments are subtle sometimes!)---I don't know, I'm just musing here, but I hope they can someday really learn & understand this, & accept you for the wonderful presence you are in your husband's life, rather than judge you based on mis-information, or no information, about an illness that's so little understood by many.

    Hugs & hope it gets better,
    Pam
  7. JaciBart

    JaciBart Member

    I have sent them SO much INFO OVER THE LAST YR. about this dd and been so upfront & forthcoming with info and they still only see it from the angle of what this is doing to Scott, my family of course sees it as how horrible it is for me.

    They have the internet too and they know how to find all the best info out there, but the info I have provided them from this sight is plently.

    I think a lot of the power in prayer, I do it daily myself and I do think God has all power but I also think making everyone well is just not gonna happen.

    Jaci
  8. elaine_p

    elaine_p New Member

    I agree that you should limit your exposure to your in-laws as much as you can. You may not be able to do it completely, but you could perhaps cut it down.

    One thing that might help is finding one of the articles that relates the quality of life for different illnesses, then show that article to them. I'm not sure how you can find it, but I have seen it in the CFIDS Chronicle at least once, and perhaps other places. (Where people on chemotherapy have a greater quality of life than people with CFS. Where people with AIDS have a greater quality of life. And I don't remember what else.) Maybe you can contact the CFIDS Assoc of America and ask if they can point you in the right direction, or maybe someone else can help more.
  9. kmelodyg

    kmelodyg New Member

    I am so sorry that you are having such a tough time right now. I understand completly. I just had a good example of this happen as well. My ex and I were trying to work things out together last week. He has been with me the whole time I have been going through my FMS. (So he's supposed to understand about it by now). Well, he had asked me on Thursday night to MABYE pick him up from work on Friday night (if he didn;t have another ride). Well, I ended up flaring like crazy and I couldn;t sleep. So, finally around 4 AM I did. And I didn;t wake up until 4:30 PM. Well, I didn't get the message that he called at 3 until around 5. That's when he was getting out. I checked my e-mail and he hadn't written. So, I assumed that he got a ride. Wouldn't you? Well, he didn't. He ended up taking a cab, which is VERY expensive. I talked to him later that night and he ripped me a new one!! He said that I really messed up ans that he can't ever count on me. ANd he said that it was because of the pills that I was having all my problems functioning. He said that if I didn't stop my medications, we would be through. Well, needless to say, it is OVER! What a jerk! He knows how much pain I'm in all the time! He knows that I can feel good one minute and bad the next! What nerve! I don't think that anyone can fully understand what you go through except those who already have it. I guess you find out how people really feel when everything blows up.

    I am also constantly being told that I will get better, and that I need to go back to work. The only one who dosen't say that to me is my Mom. This is because she has it too as well as MS. She tries to talk me out of going back to work. She thinks that it is unrealistic. I am trying though. I am fighting with my body everyday.

    It is such a pain in the "you-know-what"!!!!!!!!
    AAAAAAAAAAAAAAGGGGGGGGGHHHHHHHHH!!!!!!!!!

    Don't let anybody tell you what to do or how you SHOULD feel. You are the only one who knows your body and your limits.
    Kathryn
  10. kerrymygirl

    kerrymygirl New Member

    You are right if they do not want to learn then that is the very best we can do.Being an advocate I have all kinds of literature. Seems as soon as they read it that is it,gone. Maybe it is their brain fog??? Or want it to be.

    I understand why alot do not get it. All I ask for is understanding for the people in my life I HAVE to deal with.

    It is like my mom`s breast cancer. She has a huge hole in her chest. Is a very proud,trim,prim and proper lady.Looks & presentation were always extremely important to her. She was only 40. I certainly can not feel what is like to live the rest of your life with such a large cavitiy on her body. But I was young and always tryed my best to understand, help her and have compassion for her situation. I cannot see it of coarse, she looks great otherwise. I just know it has not been easy for numerous reasons. So I hurt for her.

    That is all I ask if I try to educate you, and you know the active person many of us were. WHy the heck would or could we make up this DD. I live alone no one to tell or cry on a shoulder. No reason to make in a mo. what I had just gotton my business, was making in a hr. or 2 10yrs. ago.

    That is why it bothers alot of us from the ones we love. Of all people we expect them to try to understand. I expect from them to look into it before they insert foot. So whether you can come to terms with them like that or not, most of us have been through the pain of it. Many of us lose husbands,it still hurts,even though we are better off without the jerk if he can not stand by our sides. Even your own kids it taps into their own vulnerability so they may back off, still hurts. Even though you understand.

    I still say why do we have to do all the understanding of them??????Prob. shouldn`t......

    Take Care try not to let their ignorance (that is what it is if they do not try to learn) get to you .....Hugssss

    PS/ Almost every disease has it`s up`s and downs. Just before my dad died of cancer. We had a B-day party for him, no 1 new we called in hospice. He acted fine laughing got all dressed etc. We all have good days & bad days just ours happen daily. But most illnesses people can be up and down.

    [This Message was Edited on 07/14/2003]
  11. Jen F

    Jen F New Member

    and I know how painful it is...

    My father has been telling me for years I just need to exercise more and eat more cheeseburgers and isolate myself less from toxins because a little toxins are good for everybody.

    I can't tell you the number of times I explained to him that more exercise was one of the first things I tried and just made me more exhausted. I don't think he wants to listen or wants to learn.

    I have also sent a bunch of information over the last few years to family and I don't know if it helps at all.

    My mother lives out west and I feel like she just can't handle the fact that I am sick anymore. She was at least somewhat supportive some of the time previously, but she likes to deal with things, fix them, and move on. And she is not able to fix me instantaneously, so I think she has given up and just prefers to forget about me. She never phones me anymore to see how I am doing. It's always me making the long distance call these days and talking about how she is doing.

    My aunt, who I recently had a major dispute with, was keeping money from me illegally and I had to even get a lawyer -- like I have energy and money to waste on that crap... kept making references as to how : "well, [she][unlike me?] HAS to work" It has been said pointedly more than a couple of times like it's a decision I made not to work, but she is not that fortunate and she can't just sit around and be lazy, she has her retirement to think of. She has recently inherited over $250,000 but does not help me out in any way anymore, and as I mentioned above, in fact tried to keep some desperately needed money from me. She is not poor. She is not really rich either, but she has a husband, a house, a car, nice furniture, and a small cottage they are building outside the city as their retirement home. And no children. We used to be rather close and initially she was helping me out with food and $10 here and there, but that has changed.

    I realize that my family, to some extent, has given up on me and cannot accept that I am truly ill and doing my best to try alternative treatments to recover my health. And it really hurts. I know I would help my family members if the shoe were on the other foot.

    I am so sorry your in-laws won't help you financially and that they think you just need to force yourself back to work. I don't understand how people can be that blind.

    I hope you can find a way to muddle through your life despite that.

    Sincerely,

    J.