I'm new, and could use some support.

Discussion in 'Fibromyalgia Main Forum' started by annie1202, Apr 18, 2007.

  1. annie1202

    annie1202 New Member

    I'm new at this, and could really use some support or encouragement.
    I've been ill for about 5 years and have been to many doctors who can't figure out what is wrong with me.
    I am exhausted most of the time (not just tired, exhausted to the bone) I hurt all over, in fact sometimes it hurts just to touch my skin. Many days I have to talk myself through even taking a shower and getting my kids ready for school.
    While my boss is very understanding, and lets me take naps when needed, he doesn't understand completely. He thinks I don't get enough exercise and that my diet is too restricted (I have allergies to over 50 foods). I know he gets frustrated with it.
    My husband gets frustrated because I can't stay awake during the early evening to take care of the kids, and that the house isn't always kept real neat. I feel like a horrible mother! He doesn't understand and just tells me to "deal with it."
    My present doctor just thinks it's depression and has put me on antidepressants, which have done nothing. I am going to see a new doctor on Monday. He is a wholistic M.D. I am hoping that he will at least be understanding and can give me some hope.
    I am frustrated because I can't stay asleep at night, but during the day, I can sit down and fall asleep at the drop of a hat. My hubby works 2nd shift, so I am alone with my kids in the evening. They are the ones who really suffer. I am blessed with great children, who are understanding, obedient (for the most part) and hate to watch t.v. programs that are violent, scary, or morally wrong. They police themselves well. It completely exhausts me to travel, which is a concern since my new doctor is 80 miles away. I can't go on family vacations because I can't keep up or function well. Unfortunately, my hubby doesn't understand and will not change the vacation destinations to do things in this area that I might be able to participate in. Instead, he takes is mom with him and the kids on vacation. And I end up feeling like a real heel since I don't go along.

    How can I explain to those I love what I am going through, and get them to understand that this is not in my head, that I really hurt, and I am am so exhausted sometimes all I can do is cry???? I feel like a complete failure at everything!

    HELP!!!
  2. minkanyrose

    minkanyrose New Member

    you will find many caring loving people here to help you and encourage you when you just need to scream or need a gental hug you are in the right place.

    I can relate to what you are saying my family and ex didn't beleive I was sick until I was approved with disability.

    There is a thread in here about the spoon theory that explains to family and friends well but for them to understand is not always what happens.

    some one else can tell you how to find the thread on here i have a hard time remembering and explaining how to find it.

    Hope your husband will understand how you are feeling and that you are exhausted so he will help you out and include you in plans that you can participate in.

    hang in there it does get better when you pase yourself and pamper yourself. don't feel guilty about taking care of yourself if you don't you are no good to anyone.

    hope you have a great day
    Brenda


  3. wld285

    wld285 New Member


    Your story is not new to any of us. I have been through this since I was a teen. Raised 2 children and now have 3 grandchildren. I also still work because I have to in order to see docs who know anything about this.

    My family still doesn't understand me either, and probably never will.

    You will get support and some of the help you nee from this board. Don't give up.

    Linda
  4. 139864

    139864 New Member


    Hi Annie
    This was written by a young lady with Lupus ,Christine !this is how she was able to explain her disease to her best friend ,because like most of us ,she didn't look sick .it is now copyright .
    Perhaps you could print this off & ask your friends / family to read it .
    I hope it helps
    Brenda uk



    The Spoon Theory

    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 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. 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 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 “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 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 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 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 “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, “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 “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".


  5. Debra49659

    Debra49659 New Member

    Hi Annie...it sounds like you suffer from many of the same symptoms that I do. Maybe when you see this new doctor you should ask him about fibro. Your story unfortunatly is not unfamiliar to many people hear, please try to hang in there and get yourself some treatment. Many doctors love to chalk up our symptoms to depression. My response was always, I am depressed because I am in pain. I am not in pain because I'm depressed!!

    Deb
  6. annie1202

    annie1202 New Member

    I do think I have fibro. My aunt had it for 7 years, and then God healed her of it. I seem to have most of the symptoms.
    I tried to explain to my doctor that I am depressed because I am in pain, not the other way around, but he just patted my on the back, gave me a condesending smile and script for antidepressants. I see him today to follow up. I think I might, nicely of course, give him a little piece of my mind.
  7. annie1202

    annie1202 New Member

    The spoon theory makes so much sense. I will have my husband and boss read this, hopefully they will get some insight.
  8. Marta608

    Marta608 Member

    My heart goes out to you as you struggle with the illness, the children, an insensitive husband and the anxiety that comes with all of the above. We expect so much from ourselves - in part because everyone else does. Don't worry about your husband, it sounds as if he's taking care of himself just fine. Your kids seem to be wonderful and very well adjusted so you've done a great job at your most important responsibility.

    And you work?? Of course you feel exhausted!

    I'm so glad you're going to a new doctor who may be able to help you, no matter that he's 80 miles away. Hopefully he will work with you via email after your initial testing. Do ask him. And have you been tested for Lyme Disease?

    Most of all, you are NOT, hear me?? NOT a failure. You're a super hero and anyone who doesn't believe you should be ashamed of themselves.

    I'm so glad you found this compassionate board. Please keep us updated on how things go for you.

    We all just amaze me.

    Gentle hugs,
    Marta

    P.S. The Spoon Theory is a good story and helps some people who read it understand better. But don't be discouraged if your boss and husband don't quite get it yet. They sound like guys who need proof and this illness doesn't offer much of that. As for your current doctor, don't waste your energy unless it will help you feel better. M.

    [This Message was Edited on 04/19/2007]
  9. Fmandy

    Fmandy New Member

    Your story sounds so familiar, way too familiar. I think you made a good choice by coming here. These people are the greatest, as you can see. We all study together and try to find treatments, or ways to relieve our symptoms as best we can. We learn to cope with life as best we can. We use our spoons wisely :) Well myself, I really don't know but am going to start trying...What a great explanation of how to cope with a chronic disease on a day to day basis.

    Thanks Brenda for printing that. I had always heard of it, but had never read it. Annie, this is how we cannot be pushed. I am going to print this out and show my wife who sometimes pushes me faster than I can go. The spoon theory says it all. You should show your husband.

    You have to find help with sleep SOON. I think a lot here use sedatives instead of "sleeping pills". I sometimes take 1 mg of Xanex when I need sleep help and boy does it help.

    Traditional doctors do not do enough blood work, so I hope that your new holistic doctor will thoroughly test your blood for the Epstein Barr virus and other fatigue causing bugs (CMV and other herpes viruses). Also your blood needs testing for all the abnormalities possible, without getting into research.

    A rheumatologist diagnosed me with having FM, which I knew nothing about. I went to him for arthritis, which I have. I think this specialty probably makes as many or more FM diagnoses, than any other medical specialist.

    I do hope that you can use our support in "getting the pressure off of you". You surely are headed for a diagnosis, so until then tell your close family members to help you, and not add to your pain until you can get the proper medicine and treatment.

    Please get better :)

    Andy
  10. Engel

    Engel New Member

    It is hard for someone that is healthy to understand. My rheumy said I should go to a support group and take family with me. Oh yeah right ... like that is really going to happen. Most of us feel guilty for not being able to be a perfect parent and/or mate. I raised my son alone and was ill for most of his life (he is 23). He turned out ok but still insistss that all of my problems are "mental". Yeah right. I want to be a cripple to get attention ... lol.

    ((((((((((( hugs Annie )))))))))))) don't beat yourself up.
  11. annie1202

    annie1202 New Member

    I just got back from the visit to the doctor that I am leaving. He still isn't listening. I suggested Fibro or CFS, and he told me that he believes both are just another diagnosis for depression. He did give me samples of Rozerem, which I will try. I would do about anything for a full night sleep right now.

    I also got medical records from when I was in the hospital last October and found some abnormal test results that were never told to me or followed up on. Hopefully that will shed some light on things with my new doctor.

    I really appreciate your supportive comments. Thank you all!

    Annie
  12. coolma

    coolma New Member

    I can't believe how disappointing and ignorant some doctors seem to be about the reality of fibro and cfs.

    There is so much out there to indicate they are wrong! These conditions not only exist but are growing in increasing numbers. By the time the world of healthcare and doctors all recognize them, it is going to cost the nation billions in health care costs.

    I found the best way to deal with doctors, though this is hard, is to state the facts.

    Emotionally we are really strung out because of the pain and the terrible loss illness has cost us; our jobs, our joys, our passions, our families, our purposes in life, the list is endless.

    We need to find adequate treatment for all of these losses, emotionally and in change of lifestyle choices.

    Plus the burden of treatment for all the symptoms and all the side effects of illness.

    Then, we need to be our own best advocates.

    I take a written list of things I want to discuss with my doctors and specialist. After the emotions are dealt with, I deal factually with what I know and what I want to know, and with what my needs are.

    I learned from my specialist, they are practicing scientists, so they deal matter-of-factly and scientifically with their diagnoses and patients. That is what they are trained in the most.

    I just found it was better if I stated the case matter-of-factly, kept asking until I got the result I needed - tryed different meds until I found the right one and persisted.

    Yes, it is hard to do, but I think we would all get along better with our doctors if we did this. If I didn't like a diagnoses, I asked for more opinions. I insisted on more care.

    There is such a huge emotional component to illness I know the above seems very hard to do at times, but I have had success with it.

    Good luck and I hope you get better care in the future.
  13. coolma

    coolma New Member

    Our family members will not understand what we go through until they have to go through some things themselves.

    After 11 years of this and just suffering so much, I have learned to handle it in a different way, and it works.

    When requirements are placed on me that I know I cannot fill, I have finally learned to say simple "No, I am not able to do this at this time". Period. AFter a couple of times with family members and friends reacting (because lets face it, Moms ALWAYS do everything!); they eventually learned that what I said, I meant.

    I only do what I agree I can do now. If it is too much for me, I say NO> and they have to take the results.

    BUT, what I could not do, I found a way to get done by enlisting help - because let's face it, nobody likes to live in a messy home, meals have to be eaten and life does have to have some substance to it, plus, our loved ones do not what to hear about our ills every day. Some times, these illnesses just wear our loved ones out.

    IDEAS which I used:

    Enlist the help of any social services, red cross, cleaning service if you can afford it, community care access centre, local church volunteer groups, to aid you in shopping, an occasional cleaning, or some moral support. Help is out there if you look for it.

    I enlisted the aid of volunteer teenagers from a local church to initially get my home in order when I became sick, recalled the girls to help with babysitting my grandchildren with me when I was too ill to get off the couch, and the young men to mow my little lawn when I could not push the lawnmower!

    a local church group had a list of volunteers that would do community service. One offered to take me shopping once a week for my groceries. People offered me rides.

    Seniors for seniors, the Arthritis Society, a fibro or CFS support group, offers emotional support. A woman from the arthritis volunteer group telephoned me once a week to keep me connected.

    Though I was too young to join, the Senior's Centre locally, allows people on disabilities to join. Only 2 hours once a week led to a volunteer opportunity when I was physically able later, new friends, and a social outlet for crafts, activities, that I did not have.

    When we are cut off from the workplace and our previous friends and activities due to illness, we have to rebuild life.

    Just a few ideas. When you enlist the help of others - and I don't mean just family, you will give integrity to your statement that you are ill.

    And, you will gain a support group, new friends and blessings to your life in other ways.

    About the hubby taking off with the kids on vacation - very sad - relationships are often tried by adversity in some way or the other. Are you very close to him? Could you explain how this made you feel? Men are not good with illness and worse with talking! I hope things get better for you.

    good luck, and I hope you gain a better support system, you deserve it!~


  14. annie1202

    annie1202 New Member

    Good idea about enlisting help. I guess most times I feel like I have to do it all because I'm the mom and it's my job to do it all. My kids do help (with much protesting) and they don't do it the way I would like it done, but I am learning to live with that.
    I guess the area that I would love to have a lot of help on is grocery shopping. I used to love it, now the thought of going wears me out! And I have to take the kids, which they now help, but I would love to bring some of the cart pushers home with me to help me unload it all.

    About the hubby, I have told him how it makes me feel, but he said that he doesn't want to "punish" the kids for how I feel, and that they love to go to this location and he is going to keep going, whether I go or not. He did say we could do some things in this area, but I have yet to hear of any plans. I did tell him about the doctor's visit today and how it made me feel. He seemed to be understanding and is now teasing that everything that is wrong is depression. He is all for me switching doctors.

    annie
  15. MsE

    MsE New Member

    You have come to the right place, Annie--a true home for those of us with these illnesses. I don't know what I would have done without this board. The people on it have kept me from going nuts many many times. Welcome! MsE