Please Help me find this letter for F.M. Only for familys

Discussion in 'Fibromyalgia Main Forum' started by 92457, Sep 1, 2005.

  1. 92457

    92457 New Member

    Hi Everyone,I have not been back here for quite awhile. but glad to be back. There was this letter dealing for only family's that do not understand. what we go through daily. And it tells our family everything was is wrong and could go wrong, and our pain travels alot. and helps them make them understand what we go through everyday. doe's anyone remember what it say's I have lost mine along time ago. also Im thinking about going back to work. what do i tell people why i have been out of the job so long. do i tell them the truth?
    Thank you my Name is Paula
  2. mjwarchol

    mjwarchol New Member

    LETTER TO FAMILY AND FRIENDS (INVISIBLE DISEASES)
    I’m not trying to speak for everyone, but from my own perspective I can tell you what I NEED from my family and friends and so seldom get.

    I NEED TO BE SHELTERED dropped off at the curb and told, don't try to do that, let me help you.... There is so much going on in my body that I have no control over and it does get overwhelming and exhausting to my body.

    I NEED TO FEEL PROTECTED even though I can't be safe on the inside at least I can feel if ANYONE or ANYBODY wants to "get at me" then they are going to have to "GO THROUGH" my protector.

    I NEED TO FEEL CHERISHED as if my family or friends feel they are blessed for each day we have together, LIFE IS SO FRAGILE.

    I NEED TO FEEL CARED FOR when I am feeling sick everything is hard to do, even dressing and I WOKE UP WITH ONLY 2 MILES OF ENERGY INSIDE OF ME AND A NORMAL DAY TAKES 25 MILES WORTH. I need someone else to say, "let me empty the dishwasher", or “so what do you need me to do?” I FEEL GUILTY when I can't do the daily inconsequential details that are theGLUE HOLDING THE HOUSEHOLD INTACT.

    I NEED TO FEEL RESPONSIBLE I know the latest research, I am on the internet each day to learn more, please don't say B-12 might cure me, I’ve tried the miracle cures and read the articles. DON’T YOU KNOW how DISAPPOINTED I GET WITH MY OWN BODY for NOT COOPERATING?

    I NEED TO FEEL FORGIVEN for NOT being a full person (in the world's view). You may not hold a grudge, I know it’s hard on you to pick up slack, but I don't FEEL FORGIVEN, I feel guilty.

    I NEED TO FEEL LIKE PART OF A TEAM working toward a common goal (our life together) and it is OK if my main contribution is SPIRIT.

    I NEED TO FEEL INCREDIBLE I get angry sometimes seeing a tennis mom sachet into lunch with the girls after a manicure. I WISH I had the energy to even have a manicure, let alone waste precious energy on such frivolous pursuits as gossip over lunch and judging other women's clothes and homes and accomplishments.

    I NEED TO FEEL AFFIRMED So many people scoff when I can't "Do just this one little activity, and it IS EXPECTED." I get tired of feeling guilty for not BEING ENOUGH to people that I don't care about in the first place. When I rant over the injustice of my illness, don't try to talk me out of it, or encourage me, ust say "I KNOW, IT ISN'T FAIR, YOU DON'T DESERVE THIS"

    I NEED A FRIEND who is there for me on the good days and there for me on the bad days, too. I get left out of a lot, because I go for periods of time when I am unable to do much, they think I probably can't participate, so they forget about me, or just don't even invite me. It is LONELY being ill over a long term.

    I NEED TO BE ENCOURAGED The thought of being sick like this for the rest of my life INDUCES WAVES OF PANIC. It sometimes seems like a life not worth living, the quality is so poor so much of the time. I’m a Christian, I have great faith, but it can be overwhelming, especially when it’s implied "if your faith were greater, or if you would just DECIDE not to be sick....." We HAVE ALL TRIED THAT - it doesn't work.

    I NEED TO BE PRAYED FOR Frankly sometimes in the middle of the night when everyone is sleeping soundly and there are only the creaks of the house for company....I'm SCARED, REALLY SCARED. I wonder who will remember me when I’m gone and if I’m making any sort of impact on the world at all to validate my life. REALITY looms large and feels ominous. It seems like I’m PURSUED NIGHT AND DAY BY A STEALTHY UNSEEN STALKER, who knows my every move. It would feel wonderful to really believe I am actively prayed for.

    I NEED TO BE ANTICIPATED if I am sick in bed, know that I am dying inside, because I am neglecting things that need to be done, and the PRESSURE AND STRESS TO GET WELL is VERY GREAT because I know when I do get out of bed THERE WILL BE EVEN MORE RESPONSIBILITY WAITING FOR ME than BEFORE I wore myself down into a state of exhaustion and bedrest. Just come on over and SILENTLY DO SOMETHING/ ANYTHING, and don't even expect gratitude, I may not even realize, but when I get up a lighter load will be blessed.

    I NEED TO BE NURTURED I just got an email requesting a group of us to get a nice meal up for someone, because she is down with the flu, poor husband for taking care of her! I LIVE WITH THE FLU EVERYDAY OF MY LIFE! The last time a a meal was brought to us, was a year ago, after I had been extremely sick for 6 weeks. Before that it was years. No one even THINKS of reaching out to a chronically ill person, because they might be EXPECTED to do it monthly or because they are so used to you being sick, they don't even realize sick MEANS SICK. Our families suffer too, and would like a warm meal, as much as the lady who just had a baby or the woman with toe surgery.

    I NEED TO BE APPLAUDED give me CREDIT for being a SURVIVOR AND A THRIVER. TO KNOW that there are women out there who have never had more than a broken acrylic nail and an unreliable housekeeper, is infuriating sometimes, especially when it’s implied they must be better than me or I wouldn't be sick all the time and unorganized and uninvolved. I know we don't know what people's lives are like behind closed doors, but I would love, have prayed, to JUST BE SHALLOW FOR A DAY and take every STEP, BREATH AND ACTIVITY FOR GRANTED without deciding WHICH few things I could do today that will make a difference over the next 30 years (it is almost always be a good mom and wife).

    I NEED TO BE RESPECTED I am intelligent, I am attractive, I was once beautiful.... It is depressing to swell into a stranger because of meds and to have no clothes that fit attractively. I'm too tired to shop for them, and if I did shop for new clothes, I wouldn't have energy to wear them anywhere anyway. I CAN DO THINGS, I just can't prove it very often. I AM SOMEBODY not a disease, but the disease overshadows my chance TO BE MYSELF.

    I NEED TO FEEL NORMAL Sometimes it feels like a BOLT OF REALITY HITS ME, as if I JUST REALIZED I am not a healthy person for the very first time. It doesn't seem real or possible for a minute, almost shocking. I can't do everything, but sometimes it would be fun to just play with no worries. HELP ME ESCAPE for a few hours to a play or comedy club, somewhere different where no one knows and I can forget.

    I NEED MY DIGNITY It’s important for me, with so little control over anything else in my life, to at least have my dignity. Please DON'T SPECULATE ABOUT ME with other family members or friends and compare notes about my progress or lack of progress or determination or mindset, or your opinion of what I could, should or ought to be doing differently. It is easy to be smug when you aren't wearing lead ankle weights each day and trying to walk through neck deep water, this is what it really feels like. Everything is ten times harder for me than it is for you.
    I NEED TO FEEL ACCEPTED AND INCLUDED not like a project to be SCRUTINIZED for worthiness and validity. I’m not going to doctor after doctor and struggling to survive for ATTENTION. Believe me, if I wanted attention, I’m bright and capable enough to get it in other ways. I’d rather be noticed for my good qualities and accomplishments. Even if I were getting attention, which I’m not, it certainly isn’t worth all this seclusion and suffering. REALLY who WANTS to have medical tests run and spend travel money on medication?

    Not every day is like this, there are good days, and that is what makes the bad days even more depressing sometimes, because you realize what you are missing.
    DON’T TALK, JUST DO. Actions speak louder than words. You have the freedom to buy a plane ticket and go anywhere in the world and enjoy it. You can take a job, or join a club, or garden or take a hike or run in to a new shop or.............anything you decide to do on a whim. I have to think and plan and strategize. I am afraid to make plans because I really don't know if I will be able to follow through on them. Even planning takes energy, which may not leave enough energy for the actual doing. YOU PLAN SOMETHING and pull me along, with no responsibilities and NO GUILT if I can only do half of the plan...at least we will have done something.

    Brigett (Hope)


    Is this what you were looking for?

    M J
  3. LottieWilkins

    LottieWilkins New Member

    My favorite was reposted here 8/28/05. Just search "letter to normals" here under "title". It's the one with many simple facts, like describing that just because I was able to do something yesterday doesn't mean I can do it today.

    Thanks for asking--prompted me to go back and re-read it myself!
  4. 92457

    92457 New Member

    I Would like to thank you's for the letters that i was looking for.

    thanks fibro's Paula
  5. kimkane

    kimkane New Member

    I hope this helps, I have another one I will post here also.


    for people who love someone with fibro


    We want you to try to understand us, as much as anyone that doesn't have these diseases could.


    We want you to sympathize. This isn't easy for us.


    We want you to know that we appreciate all you do for us, literally and figuratively, even when we don't show it. We are glad that so many people take the time to help. The fact that you are reading this proves that you're one of these people. We know this isn't easy for you, either.


    We want you to know that when we cancel things because we aren't feeling well, it's not personal. Even when we cancel at the last minute, it's still not personal. These illnesses are unpredictable. We can suddenly have a bad health day just as easily as we can suddenly have a good health day.


    We want you to know that we can sleep as much as you and still not feel nearly as rested. It's the quality of sleep that matters, not the quantity, and people with our illnesses tend to have a lower quality of sleep than healthy people. We can wake up feeling worse than when we went to sleep, too. We know this is hard for you to understand.


    We want you to know that there's no cure for fibro, CFIDS, or any of these other related chronic illnesses. (This is a question I get asked frequently by people in my life.) Yes, there are things we can try to do for them, and yes, we're trying them. We've tried lots of them. We're doing the best we can.


    We want you to know that a lot of doctors and other health care professionals aren't very sympathetic towards these illnesses, and that we'd like support when we run across insensitive health care professionals. It is incredibly demeaning and insulting for us to be told things like "It's all in your head" or "You should see a psychosomatic specialist" about our very real, very physical pain. Sometimes we want to vent about it, even though we know there's usually not much you can do about it. If it happened to you, you would be insulted too.


    We wnat you to know that a lot of everyday people also think that it's all in our heads, or that we can't be "that" sick if we don't "look" sick. Believe us, it's not all in our heads and how we look does not necessarily reflect how we are feeling health-wise. People with fibromyalgia have, amongst other things, overactive substance P, which is a substance that helps regulate how pain is felt in the brain, so all our pain is actually stronger than in healthy people, not less. As with health care professionals, sometimes we want to vent about it.

    We want you to know that just because some of us can't hold down full-time work and/or full-time school doesn't mean we're lazy or stupid or underachievers -- and it doesn't mean we don't want to do these things. These illnesses are incredibly draining and unpredictable. A lot of employers don't want to hire someone that can't be guaranteed to work every day at set times. And school can be extremely draining to already-drained people. Many of us that can't do full-time stuff would love to be able to do so. And for you to imply that it's something we've chosen adds insult to injury. We didn't ask for these diseases, nor for the ways they have impacted our lives. Again, we're doing the best we can.


    We want you to know that little things mean a lot to us. We really appreciate the little things you do for us, even when we forget to tell you.


    We want you to know that when a particular pain is serious enough for us to complain about, we generally really mean it. We have so many physical problems so much of the time that if we complained about them all constantly, we'd never do anything else. If something is serious enough to merit mentioning, take note. And please try to be sympathetic.


    We want you to know that travelling isn't easy for us. It isn't easy for a lot of people; imagine if you also had a sleep disorder and chronic physical pain that's exacerbated by lack of sleep. Please realize that we might be in extra pain or extra cranky when we're first adjusting while travelling.


    We want you to know that we're human beings, just like the rest of you. We're just human beings that happen to have illnesses. We're not illnesses with a human being attached as an afterthought.


    We want you to know that a lot of us have lots of allergies, even to stuff like cigarette smoke, perfumes, cleaners, and pollution. Please try to be conscious of these things, especially if we mention them.


    We want you to know that we get depressed sometimes, but that our illnesses aren't caused by depression. In fact, the opposite is true: Anyone with a chronic illness will be depressed sometimes, because being in pain frequently is depressing!


    At the same time, we also want you to know that we're happy and/or joyful sometimes too. Having a chronic illness doesn't mean you can't find the joy in life. If anything, having a chronic illness makes you look harder for it.


    We want you to try to revel with us in our successes and our joys. We want you to know how happy we are when we have good health days, when we find sympathetic and knowledgeable health care professionals, when we get a great night's sleep, when we try something new that helps improve our quality of life, when we're able to do something that we didn't think we would be able to do, when we help someone who didn't understand our diseases understand them, ... And we love it when you realize how important these things are to us and share in our happiness.


    We want you to know that we get tired more easily than other people. This doesn't mean we aren't enjoying spending time with you or that we don't want to do more. It's simply that sometimes we literally can't. We need to take breaks more often than healthy people, especially if we're having a bad health day or doing a lot of exertion (even walking a long way).


    We want you to know that having invisible chronic illnesses can be really hard. People don't offer seats to us like they do to obviously sick or otherwise obviously disabled people. They don't give us other helpful allowances like they do for others that they can tell need them. We want you to know that sometimes these things really frustrate us, and that though we know you can't always change them, sometimes we just need to vent about them.


    We want you to know that sometimes we just can't do any more for a little while, even if it's something as seemingly simple as making a phone call or washing the dishes.


    We want you to know that sometimes we have trouble admitting when we can't do any more for a little while, or when we have otherwise reached our limits. Gently reminding us when we're pushing ourselves too far helps us remember that our limits are usually lower than they were before we got sick and helps us learn to take better care of ourselves.


    We want you to know that there are times -- sometimes days or weeks, even -- when we have a lot of trouble going out, and that during these bad health times, we would just love for people to visit, even if it's only for a little while. Stop in to say hi. Bring a movie. Bring a meal. Anything like that. It is so frustrating for chronically ill people when no one seems to want to take the time out of their busy lives to check in with us.


    We want you to know, along the same lines, that we really appreciate it when you take the time to be thoughtful in periods when we're not doing well. Things like offering to pick up a prescription, go with us to a doctor, or get us a few things from the grocery store mean so much to us when we're having a bad health day or period.


    We want you to know that we really appreciate it when you ask "How are you doing?" and you really want to hear the answer. We (well, most of us) try to give balanced perspectives of our lives. Sometimes they're sunshine, yeah, but sometimes they're not. And we appreciate it when you listen to us during both times, and the inbetween ones as well.


    We want you to know that because there are no cures for these illnesses, there are no guarantees. Even if we are doing better for a little while, we could get worse again. Even if we seem to go into remission (which doesn't happen that often, but does happen sometimes), we could always relapse. So even though we know you mean well, please try not to make comments like, "Oh, you look like you're getting healthy." With invisible chronic illnesses, even if we look well, we might not be feeling well. And even if we are feeling well, there's no guarantee that it will last.


    We want you to know that a lot of us spend a lot of our extra money on various things related to our illnesses, be they seeing health care professionals, massage therapy, meds, physical therapy, naturopathy, trying homeopathic remedies, heat pads, foods we're not allergic to, clothes that don't cause us much pain or discomfort, books and newsletters to help us understand our illnesses better and adjust to them better, or any of the other bizillion things related to our illnesses that cost money. We don't always have the money to do things with you that aren't free, and it's not personal.


    We want you to know that just because something seems "easy" or "simple" to you, does not mean it is "easy" or "simple" to us.


    We want you to know that we aren't going crazy or losing our memory when we have "brain fog"/"fibro fog" -- when we can't remember a really simple word, or accidentally say the wrong one, or forget something that happened ten minutes ago, or lose our train of thought in mid-sentence, or go into a room only to forget what we were going to get, or... These are the cognitive problems that tend to come with these diseases, especially on bad health days. And we know that it can be scary for you. Imagine how scary it can be for us! We're the ones it is happening to. We're the ones that wonder the most if our brains have deserted us (which they haven't, even though sometimes it feels that way). Please try to laugh along with us when these things happen. They can provide some really funny moments.


    Speaking of that, please help us to keep our senses of humor. Sometimes, especially on very bad health days, we can lose them. And a sense of humor is something that's pretty essential to dealing with invisible chronic illnesses.


    ...I am going to add to this page as I think of more things to include. If you have suggestions, please feel free to send them my way! :)





    For another take on this subject, please read the completely excellent, oft-linked An Open Letter to those Without CFIDS. There's also a slight adaptation of it for FMS/MPS, Open Letter to "Normals" (People Without FMS/MPS), from another site.


    Lady Care's website has tons of great articles & other writings for helping people understand CFIDS: There is also another Letter to People Without CFIDS; the same site also has a letter to an editor entitled PWC's Can Be Touchy and an excellent Letter to Dateline (a TV show in the U.S.) by another PWCFIDS. Please read the absolutely excellent article How to Kill a Sick Friend. That site also has a copy of the CFIDS Assosication of America's brochure, Understanding CFIDS. (Note: All the pages on this site have music files. They have squares for you to hit to turn the music off, but please be aware of this before surfing in there.)


    "Living with FMS: A Guide for Relatives & Companions is a wonderful article. "Some Advice for Partners of People with Fibromyalgia (A Work in Progress)" has some great suggestions as well.


    There are also brochures available online from Invisible Disabilities Advocate that are targeted towards the loved ones of people with chronic illnesses; you can find them here.


    There's also a self-published book out by a CFIDSer that talks about the impact of CFIDS on relationships (both romantic & friendships); you can find information on it over here.





    back to the main fibro resources page






    this page last edited 11/11/99




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    Standard Disclaimer: I am not a medical professional; I am, as noted, a patient with fibro & several related illnesses. Therefore, of course my advice is not to be taken in place of a medical professional's--it is, instead, what has and hasn't worked for me as a patient with fibro. If you need medical help, please seek out a caring, informed physician--it is an important step towards managing this illness for all people with fibro. I take no responsibility for any mishaps that happen as a result of my fibro section--please remember that it is your responsibility to make sure that things are safe and sane for you, since what works for one PWFMS does not necessarily work for another.
    --------------------------------------------------------------------------------








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  6. kimkane

    kimkane New Member

    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 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. 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 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 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

    YOU CAN USE THIS TO DESCRIBE FMS/CFS TOO.

  7. watermelonbebe77

    watermelonbebe77 New Member

    Paula TY I enjoyed your post. what about the spouse that leave us because they dont feel its fair for them to be burdened with us being ill.They can just get up and leave, but we cant we are stuck with this disease.I cant get up and take a vacation from my body. I didnt want to be ill, I loved life each day a new adventure,now each day can be a new nightmare for us to live trapped inside our bodies. A nightmare that never ends the depths of pain and agony,the unrelenting never ending physical, mental,emotional and financialthe sorrow and grief of who we use to be and the painful reminders from our loved ones saying you didnt use to be this way. I would never have chosen this none of us would. The Emergency room Doctors that think you only want the drugs. the disapoitment of our little ones faces when we are having a bad day and they want to go to the park and we just cant do it. But some how through it all we manage to hang on to a small amount of hope,maybe tomorrow I can. We help each other laugh in the chat rooms their we find undertsanding and love. TY Margie (watermelonbebe77)
  8. sues1

    sues1 New Member

    All the posts has left me in awe for they are so well stated. They are also very sad, but they are our truths!

    Somehow I am finding a new strength from what I have read. For I see a real challenge and WE can all forge ahead all in our own way. I also feel proud of myself and proud of all on this board.

    We are really tough folks with all WE face. It is important for others to realize what OUR illness is like.

    Thanks to all that posted here. God Bless US all.....
  9. chui

    chui New Member

    bumping...great letters