"I've given up on you."

Discussion in 'Fibromyalgia Main Forum' started by yagottalaff, Jun 28, 2008.

  1. yagottalaff

    yagottalaff New Member

    Well, I can't live up to my username today. It is hard to hear a friend say, "I've given up on you." I am used to doctors giving up on me, but I keep hoping my FM-only & well friends can understand why I'm not the same me they used to know. They've had 21 years to figure it out!

    Today I learned of this statement made about me by a friend of 13 years who also happens to be my body worker. We try to get together to do "normal" things, but more often than not, I cannot hold up my end of the bargain.

    It's understandable that she's given up. But I wonder, have any of you ever heard similar remarks made? How do you handle it?

    BILLCAMO New Member

    I love your handle and agree that humor is the best....and often cheapest .....LOL.....medicine !

    Yeah , I've heard that , and even said simular things to myself. But , I never give up and pull myself out of it with laughter ( Sometimes all I can squeeze out is a chuckle or smiley smirk ......LOL ....for awhile).

    Here's another one I use : "No One is perfect and he
    (or she) is not here".

    Here's a big :>) for you !

    Blessings ,


    [This Message was Edited on 06/28/2008]
  3. steach

    steach Member

    I'm sorry that you had to hear that statement from someone; that sounds so hurtful.

    Have you talked with your friend about this? That is probably the first place to start- find out if it is true. If so, print-out some of the educational information from this site and give it to your friend. You can even give your friend this web site info.

    I've had similar remarks from friends AND family. It was difficult to deal with. I felt guilty for "letting everyone down" and not doing the things I had done in the past. I allowed their comments to "beat me up" emotionally. I became very depressed.

    Coming to this site and the chat room saved my life -and- gave me back my life. I learned the meanings of "friends", "acceptance", and "control". I asked my family and friends to visit this site to learn about "me" through all of you. I learned that I can not control everything about/with my body or what always happens.

    I have been told NEVER to say "I'm sorry....." I couldn't make it, or visit, or cook that covered dish.... We don't have to apologize to others for the way our body works!!! We can simply tell them, "My body wasn't allowing me to go to the gym today"............. but I would really liked to have gone.

    I don't schedule activities/events on my calendar that are "written in stone"; I never know how I will be feeling. I tell friends and family that we have "tentative plans" providing I'm up to it.

    Just for thought, my fibro friend-
    "...grant me the serenity to accept the things I can not change,
    the courage to change the things I can,
    and the wisdom to know the difference."

    ((Hugs to you))


    BILLCAMO New Member

    Great reply !

    I'd just like to add this :

    ................And the strength to carry on , even when I and others don't understand......


    yagottalaff , here's another one you may like :

    The 1st mistake a person that thinks that they're perfect is thinking that they are......... ;>0

    Blessings ,

    [This Message was Edited on 06/28/2008]
    [This Message was Edited on 06/28/2008]
  5. sues1

    sues1 New Member

    Myself, I sometimes wonder about me. This is a stupid illness to have and to explain. I started sending copies of somethings by computer and a couple by mail. Also made copies and hung them around the house.
    I have missed so many functions, but I have to go with the flow of how I am and that is not easy. I have much more respect from the nay sayers once they got a glimpse of "my life". I have tried not to let it define me and be normal as I can. Anyhow here is one to share.....
    The Thief of Many Lives

    I am constantly on the prowl in search of new victims. I do not discriminate--health care workers, teachers, students, airline personnel, teens, and innocent children are my prey. If you are dynamic and have a lust for life, I will seek you out, and I will find you.

    Just when you are at the peak of your endeavors, climbing that career ladder or building your family and home, I will find you. There is nothing that you have in your life today that I am not capable of destroying tomorrow, your career, your education, your goals, your dreams, your family, and your life. I will have it all. I will strip you of your ability to function at any level above minimal, and from this day on you will refer to that minimal as a "good day."

    I have the ability to create an invalid out of you overnight, and I will. It will take a marathon effort for you just to get out of bed. At a cellular level your immune system will be in a constant war battling itself and unnamed viruses which will painfully be replicating in your brain. I promise you despair along with isolation and losses far beyond what you can ever imagine.

    Your mind will be in a constant "fogged" state, your expression will be unable to express, and your eyes will have a noticeable "glazed over/drugged out" look. You will find it most difficult to pay attention, concentrate, or even process the simplest of thoughts. Making change from a dollar may well be beyond your ability now. Your mouth may feel like it is full of marbles when you try to speak, as your tongue twists and nothing you try to say comes out right. Who would believe your level of education when you can't even string enough words together to make a complete sentence ... or one that makes any sense.

    I promise you, at any unsuspecting time, severe abdominal pain, nausea, vomiting and diarrhea along with a host of gastro-intestinal disorders. I will make you weak and lifeless as one could be without being confirmed dead. You will be house-bound or in bed for several years if not the rest of your life. As part of incapacitating you, I will make your heart race and your head pound; your throat will constantly be sore and your lymph glands will swell. That will all seem trivial after I inflame and spasm muscles throughout your body. Crushing a grape may take too much energy or be too painful now.

    On those nights that I allow you to sleep, you will awaken drenched with sweat and throbbing with pain. Perhaps I might even throw in a little seizure activity. On those nights that I do not allow sleep to occur, I will torture you with thoughts of death.... Not suicide, but death. Simply because you have not come to realize that this is your new life, and that you are not living.

    I have also done a few things that you may not be aware of yet. I placed some lesions on your brain (have you noticed how you have difficulty with balance and memory yet?) and have permanently turned your immune system on high. I have shorted out your nervous system so that you have intermittent numbness and tingling which might resemble an electrical current zapping you from time to time.

    Now I have you, I have taken over your body and mind. I have stolen your life but left you alive, not very functional, but by clinical definition you are still alive.

    Your family will not be able to give you all the constant care that you need on a daily basis. As for your friends, well, they're still on that ladder climbing up. I'll find them soon. By now you must have learned the definition of isolation, if for no other reason just so that you do not have to explain how you feel to others because they won't understand anyway. Isolation will save you all that energy.

    Your health insurance has already been or will shortly be discontinued as you lost your job from not being able to "keep up." Perhaps you got caught dozing off or called in sick one too many times. Now that you are no longer employable or insurable when you seek medical care, any doctor who figures me out will diagnose you and say that what you have is presently not curable.

    Now it is time for you to seek out medical care, nation-, if not world-wide. You will give more blood samples and have more examinations than you ever imagined existed. Then you can take the results to dozens of doctors in search of a diagnosis. One that is valid and accepted by the

    medical community and insurance companies. One that does not label you as depressed or say that "it is all in your head!!!" Most doctors will suggest a vacation, weight loss diet, new or increased love life, help with the children, or change of scenery as the "cure," mainly because you look like the picture of health. This is my mask of deception.

    You will pray for a positive word from current research. Research which you will soon learn is quite limited due to lack of funding and government support. You will learn new vocabulary which contains words like: T-Cells, Cytokines, Nuclear Antigens, Natural Killer Cells, Immunoglobulins, Cytomegalovirus, Seratonin, Cerebral lesions, and Immune Dysfunction are among a few. However the most important words that you will need to know and fight for the most are Social Security Disability and Medicare.

    At one point I may give you a false sense of recovery or remission. let me assure you, I'll be back, as you are my prisoner and that makes me your keeper. I have placed the lives of millions of people nationwide in limbo. I would consider this an epidemic, wouldn't you?

    Eventually I will bring the government, health care workers, and society to its knees in search of unraveling my complexities, which are crippling humanity. I leave it up to you, my victims, and your caretakers, to educate the public and let them know that I am very real and that you are very sick.


    ------------written by KATHLEEN HOUGHTON who suffers from both.

    I think we are all incredible people, we must be kind to those who doubt us and to ourselves and our family.
    Laugh when you can, keep a sense of humor and look for the blessings in each day. They are there. Share info with those around you in a nice way.
    Blessings and gentle hugs...........Susan
  6. PVLady

    PVLady New Member

    Maybe this person was never a real friend. If your inability to do things physically caused her to drop you, she must not have cared much in the first place - just using you. Now that you are not meeting "her needs", she has no need for you.

    Life and people change as time goes on, for everyone. I guess you could try to appreciate the good times you had with her, and move on. Too bad for her.

    You might make some much better friends in her place.
  7. sues1

    sues1 New Member

    This one has been used for various illnesses, Fits CFIDS/FIBRO very well.

    My best friend 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 with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have MS 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 MS. She came to doctors with me and she saw me walk with a cane. She 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 MS. 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 “Here you go, you have MS”. 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 a life without choices, 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 MS, 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, which you wont know until you wake up. To answer your question we’ll start your day with twelve. 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 the12 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 MS.

    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 my shoulders and back hurt I wont be able to put on a bra. 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 virus comes, or a treatment reaction, 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 dizzy, 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 her 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 “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, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared”

    It’s 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 that 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, “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 MS, 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”.
  8. katte

    katte Member

    Those are some harsh words. I wondered what this means about the body work?A) Is this partially the expression of a health practitioner who does not think their work is doing any good? Or is no longer willing to do the work within the boundries your *body* requires? OR connected to where they are at in their "body work" career? (If they are in business).B) No longer willing to be faced with a medical condition that challenges their belief system regarding "healing"?C) It seems this sentiment would feel especially hurtful, even a betrayal or violation from someone who's actually been your "body worker".About the suggestion to give the person Medical material, or send them to a forum or website:This may be a good idea for some, at least to try...However, it is useless for others and can make matters worse.A) They are sick of hearing about it already...too busy, or it's too scary, or it's too depressing, or makes them confront the un-confrontable for them, personally. or, is too confusing, or they think it will only enable an unhealthy obsession, OR, as was finally told to me by more than one person...it makes them feel STUPID! Some people are very intimidated by Science and Medicine and the complexity of ME/CFS. They do not want to confront themselves feeling stupid. {This comes as much or more from very educated people, including in health professions}.We have to remember also, the monstrous weight of literature and Media our loved ones may be bombarded with , which totally contradicts all that we say about ourselves and ME/CFS. This is true, too, about illness in general today, and can be even more so, within the "Wholistic" Communities. It really is a mass brainwashing. A perversion of anything that's actually valid in "Mind/Body" medicine.In a way, everyone is being taught that the correct approach to illness if CBT and GET :(And NOT to focus on limitations/symptoms/the disease experience.I know from some, being spoken clearly, or unspoken...that interaction is acceptable only IF it does not require talking about ME/CFS. This might vary...it might mean that saying briefly how I feel is acceptable, but the Science and Politics..not. It might mean I can tell them what advocacy work I am doing, or friends I'm meeting, with boundries and style that varies among the persons.In some ways, statements like this one from your friend, have been devestating to me.On the other hand, it can be better to know this clearly, rather than all the unspoken, unexplained moments that can feel horrific, but much murkier. (And later, leave strong feelings of betrayal of trust...re: the times this was felt, but not spoken).If I sense this from a Health Care Practitioner (or before), it's very important for me to tell them they ARE helping me, contributing to healing...so they don;'t feel that not "fixing or curing" is a failure or waste of their time.About getting together...I have to constantly re-create the ways I can do that. If there are times, places, environments I do best in, I propose those and invite the person. I was able to see people alot for a few years this way. For me, it meant to meet at an outdoor cafe a short distance away, in moderate weather, in the PM, becasue I can show up for that the most consistently.Even better to have some friends who were themselves flexible or able to be spontaneous...and would acceptthe invitation, even last minute!I can also do this sometiems, at local hangouts nearby, and *spontaneously* run into friends...no planning required :)))Or be part of a social or community group, where being late, or not showing does not ruin the event.In other more homebound years, it might be to find out their schedule, when they would be closest to my house at the time I can see someone, and invite them to stop by. And make sure I am seated, or lying the most comfortably (This means feet elevated for me, due to NMH and Heart, and near freshest air. Maybe with a spray mist of something tolerable becasue it makes me feel good. These would be me at my best, becasue I can think and communicate the best, and most relaxed).And make sure I am asking about them, and listening to them. Not simply a denial of self, but staying connected with "the outside world"...and challenges and joys that others face today.For the last while, I've been doing soley what works for me and my body/brain and schedule. Since I am very near the town square, so to speak, it's easy to get "somewhere" or gathering that I will see friends, and only stay as long as I feel like it. It's very relaxing.But some difficulties will come soon, as I may have things coming up that I really need help with. Then, the results of all of this spontaneous, relaxed social approach may come back to haunt me...since it has meant less closely bonded or consistent, with individual friends or circles. :((Some of the alienation among friends and social bonds is also experienced by other people today...just the way our Society is operating. Noticing that among even healthy people can lift some of the pain that feels so personal.In spite of that, here is what I heard once at a Cancer Survivor "spoken word" event.A story about a Dwarf. Knowing about bigotry, someone asked him "isn't it terribly difficult, being a Dwarf in this Society?"He said: "No, it isn't...it's a great way to weed the assholes out".Best wishes,K
  9. texangal81

    texangal81 New Member

    Maybe MY words are harsh, but I know I've been standing by a friend for 10 years now who has done some pretty bad things to me. A lot worse than bailing out of normal outings. And I plan on standing by him until the end. Sometimes he drives me nuts with his whining and complaining. I think his ailments are all emotional. But they are real nonetheless and I listen even when I can barely move.

    I don't think it is understandable to give up. She is healthy, if you have to back out of something, would it kill her to maybe bring you a little something to cheer you up? Maybe dinner so you don't have to cook, maybe a DVD so that you CAN watch a movie, just in the comfort of your home. If you are in so much pain that you can't think, why can't she sit with quietly while you suffer?

    That is a friend.
  10. MamaDove

    MamaDove New Member

    I love your username and you should be doing that as much as possible today...

    That 'friend' you referred to may have something going on in his/her life that enabled them to make that remark in the first place...The first thing that came to mind was this...This person may care about you dearly and can't bear to stand one more cry, complaint, excuse as to why you are unable to do certain things that normal people can...

    Try this:

    1)Don't react at all, this is likely about THEM and not about YOU at all

    2)Don't give them the power over you...This statement has made you feel bad enough to come here and share your feelings...Would you consider printing this off and giving it to them in an attempt for them to understand how hurt YOU felt...

    3)YOU have made this about YOU, that is not to blame this on you, it's just something I have learned lately...Many people have made their feelings known to me about my conditions...I used to care what people said, I no longer do and I am benefitting quite nicely from it...I am now stronger and have unloaded alot of baggage I once called friends, true friends will find a way to deal with your limitations, always...My 'circle' is very small, but very honest and I now know who I can count on and who put on the show so I would consider them friends...

    Friends can be overrated too...All of the people in my family and those I considered friends are all non-existent in my life due to their misunderstanding of my illnesses...My husband has stayed with me cause he loves me unconditionally and my friend Cay, whom I don't see often but we both know we can depend on eachother cuz we are in the same boat...

    Don't give this more power than it deserves...This could have been a long-awaited comment meant to make you distance yourself from this person and make it your issue, could have been a loose lips, sink ships comment and they will likely apologize OR it could be something be made from absolutely nothing and everything will be back to normal soon...

    If this has hurt you to the core (and you will know it) you may want to walk away from this 'friendship' and be thankful you had it once and life goes on...

    I have been in all these situations and once I listened to Wayne Dyer speak, I realized it is all about PERCEPTION...Everything we do is about how we perceive...We have to live with ourselves, if we are satisified with being abused, unloved and used, we will settle for that, if we have the belief that we are worthy and deserve better, we will seek out those to have around us...

    Much like this board, there are those of who I trust my feelngs and those that don't get me at all...I don't respond to them and I wish they would keep their opinions to themselves...I can ignore them and it's all good!!!

    Hope I explained this well enough that you feel better about this...Don't give it the power it doesn't deserve...Do something wonderful for only YOU today and forget everything else...You deserve that...You live with alot of 'stuff' and need to be appreciated and pampered...Take Care of YOU dear...

    Let us know that you sre feeling better will you...some of us care...Peace~MamaDove
  11. PVLady

    PVLady New Member

    I am wondering if yagotalaff has seen these reponses.... If you did can you let us know

    [This Message was Edited on 07/01/2008]
  12. Honora88

    Honora88 Member

    I try not to do business with friends even if it is bodywork.

    It just gets way too messy and then there is no detachment.

    A professional would never have said that although would have felt it.
  13. Bluebottle

    Bluebottle New Member

    At my father's funeral 9 years ago (which I really, really struggled to attend) my brother and sister informed me that they too would like to lie down all day, but were too busy.

    I haven't heard from them since.