help me understand

Discussion in 'Fibromyalgia Main Forum' started by donna07, Jul 25, 2008.

  1. donna07

    donna07 New Member

    hi all

    havent been here in a while

    2 of my children got married!

    here is the big question

    my oldest daugther came over yesterday and we started talking, yes this is about fibro.

    because her father and i divorced, i dont feel it my place to go on cookouts, i recieved so much greif as the girls were growing up, from him, but i sucked it up for my kiddos, and did all the gatherings and did it with absolute sweetness! oh it was hard!
    now their grown! and my oldest is throwing a fit for me to stll come to the gatherings.
    i have fibro, myofacial pain, lung trouble etc...
    i have enough grief of my own , and i counted the days till they were 18 so i never had to deal with them again (the dad and his mom)
    they also live an hours drive away( the dad and his mom)

    my daugther cant understand why i choose not to go to the functions, cook outs etc.....
    i said besides me being happy that i dont have to be around them (i do encourage and have always encourage, the girls being close to their entire family)
    i hurt all the time.... she rolled her eyes at me, and i wanted to die, i felt she thought i used the fibro and etc.. for an excuse i suppose?
    then she compared me to her mother in law, saying i wasnt like the rest of moms, no im not! i cant be, but i sure waded through alot of pain to keep her busy and happy and clean and fed......

    she said her mom in law still gets together w her ex's family..........

    broke my heart!!! am i not normal? please tell me guys!
    should i suck it up and still go to ex in laws and ex husbands grt to gethers?
    but more importian , how do i let my kids know that mom is ill?

    thank you for taking time read this
  2. cookie1960

    cookie1960 New Member

    hi Donna!

    You did your job - and they are grown up now. They need to understand that stress triggers FM and can cause flares and pain. What if you were allergic to bees? Would they ask you to picnic in the middle of a hive? What if you had skin cancer? Would they ask you to spend the day in the sun at the beach? They have to realize that this is your health - not just your excuse for not attending.

    Sometimes you just have to do what is right for you - no matter what the consequences.

    Good luck & stay happy,
  3. donna07

    donna07 New Member

    I hoped I was looking at it right. I thought just what you said, then I was compaired to her mother in law, and I started to dought myself.
    I will stick to my guns then.
    donna 07
  4. Pansygirl

    Pansygirl New Member

    Hi Donna ~ I agree with cookie you have done your share for your daughters while they were growing up and now it's time to take care of yourself.

    Stress is such a big trigger for FM and you don't need that kind of stress from and ex and his family.

    Where you sick with FM when your kids where still living at home?

    I say stand your ground and do what is best for you and your health. We have to stand up for ourselves because we are the only ones that know how we truly feel. :)

    Gentle hugs, Susan
  5. minkanyrose

    minkanyrose New Member

    looks like your daughter tried to lay a guilt trip on you.

    you sucked it up long enough and they are grown now and you do have your health to worry about. you did your job and you now can pick and choose what is better for you, you served your girls long enough and did the motherly thing and now the role is diffrent because she is and adult.

    wishing you well
  6. Leaknits

    Leaknits New Member


    Stay home. You don't have to go and be made miserable at The Event and then pay still more with pain and exhaustion for how many days following??

    You did your job, you were a good mom and kept the girls fed, clothed, sheltered, schooled.
    Now it's their turn to understand you can't just jump up and run when they think you should.

    Don't let them Should on you, :).

  7. Janalynn

    Janalynn New Member

    You do not have to go there or any place else you don't want to go. It's time to put yourself first. Your daughters are guilting you into doing things. They need to learn a little maturity and know that that is wrong to do to anyone. A little understanding on their part is in order.

    Remember - you're the parent. Period. If you didn't have money and would you let them guilt you into buying them a car or buying something frivilous for them because other Moms do it? NO.

    Once you start giving in to that kind of manipulation - it will never ever stop. They (and others) will learn that if they push hard enough (through whatever methods work)they can get you to give in or cave in any situation. You certainly don't want that.

    You're providing love, you'll always be their Mom - you can support them in other ways than showing up or doing things that you don't want to do or can't physically do.

    You hang in there - stand your ground. In the long run, it will be for the best!!
  8. Iam1ShadyLady

    Iam1ShadyLady New Member

    Also have your loved ones read it:

    The Spoon Theory

    My best friend Jenni and I were in the diner talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

    As I went to take some of my medicine with a snack as I usually did, she watched me this time, with a kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. Jenni had seen me cry in pain, what else was there to know? I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn't seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

    As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

    At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Jenni, here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands. I explained that the difference in being sick and being healthy is having to make choices, or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of choice, a gift most people take for granted.

    Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

    She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

    I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of "spoons". But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started yet. I’ve wanted more "spoons" for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

    I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said " No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can't take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too." I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her a spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

    I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s "spoons", but just think how hard tomorrow will be with less "spoons". I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on "spoons", because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

    We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

    When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

    I rarely see Jenni emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “Jenni, I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared”

    Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day's plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count "spoons".

    After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Jenni, don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

    Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my "spoons".

  9. donna07

    donna07 New Member

    you have all been so helpful. thank you for taking the time for me. means alot!
  10. WhoSaid

    WhoSaid New Member

    Seriously, you are old enough to know where you do and do not want to go and NO ONE has the right to question your decision on that. Especially not your children.
    A simple I am not going because I do not want to should be enough. Your children are old enough to simply "get over it" and respect you enough to leave well enough alone.
    So-and-so does thus-and-such is such a lame reason for doing anything so saying that is just pathetic.
    If they don't understand that you have health challenges then there is no way you can explain it. If you are clear that you are not going because you don't want to then they have to drop the charge that you are using your health as an excuse and maybe start to understand you are serious on both counts and not confusing the two.
    Can you tell I am having a cranky day?
  11. marti_zavala

    marti_zavala Member

    and it would have nothing to do with my health.

    Ex means EX! Sheesh!

    I am sorry that you had this dumped on you.

    Sounds like you have to set limits to keep yourself healthy - your physical health and your mental health.

  12. katiebug61

    katiebug61 New Member

    Hey Donna,
    I also have an ex. To this point, since my son had surgery on his brain, I haven't had to spend time with him and his family. It is great for me, because my ex in-laws blame me for him cheating on me. I am the root of all evil her my ex mom in law's eyes. Whenever my kids get married, I will be there. I do NOT attend X-mas or other holidays when they have them. My son goes with his father to those holidays and me and my current husband and other son have our holidays. Not a problem. Sounds like the girls still hope you guys might get back together. They need to realize you don't want to do things together anymore. I understand stress making the FM worse. When I am stressed, I can almost guarantee some kind of flare. It is not because we are doing it on purpose, but the stress just reacts with our bodies and chemicals. Do NOT feel bad about not going and yes... it is time to explain to your kids know what you have and how it effects you. They could have it someday, if it is a inherited condition.
    Do NOT feel guilty. The ex is a part of your past ! I know mine is!
    Stay strong.... :)
  13. Peace77

    Peace77 New Member

    I have fear going to my family reunion because of the cracks they'll make about me. I can't imagine going to the X's cookouts. Even the car ride would jam me up. Pray about it before you tell your daughter, but you'll have to set limits on what you're willing to do. The stress would be enough to throw you into a flare. We all have to set healthy boundaries. It saddens me to read about your daughter's reactions because I'm going through very similar situations. My daughter told me, Do you go to the dr. every week? Your the sickest person I know. I'm sure you want to make your kids happy we all do, but you can only do so much. Take care and I hope your discussion goes well. I'd still be gentle with them. Kids have a way of blaming us for things that aren't our fault. They are part of the normals and the normals especially young adults can't relate. Be strong,