Those of you with FM and Husband/Wife or partner...How...?

Discussion in 'Fibromyalgia Main Forum' started by orachel, Sep 11, 2005.

  1. orachel

    orachel New Member

    Man oh man...I'm having such a hard time dealing with this! What I need to know is how did/do your sig other deal with your limitations (specifically those of you who are severely impaired daily) emotions and basically support you in dealing with this? Obviously its a huge impact on them as well...
    My DH (in this case, DEAR husband...) and I have been married for about 2 yrs, lived together for year before that, and known each other since high school. Up until this, we really argued very seldom, even though we've had a whole lot of trauma in a few forms thrown at us since we've been together. I got sick about mid June (and I mean REALLY sick...almost couldn't move at all) and have been diagnosed with FM for a month. We're at each other's throats! I understand that this situation is stressful in the extreme for both of us, plus add financial strain (I'm unable to work and still waiting on disability benefits)and him having do pick up the slack at home (some housework I just can't do at all). I keep feeling so isolated and lonely in this! Seems like he's not dealing with the reality that OUR WHOLE LIVES HAVE CHANGED! Seems like now, when he has an excuse to be out of the house, he is.
    I'm really struggling with this. Huge guilt, and terrible sense that I'm a burden to him (and we're only in our early 30's). I know that I shouldn't feel this way. I know that neither of us asked for this to happen. I just hear certain things he says and he seems a bit standoffish, and I'm having a hard time dealing with it. He seems almost to be acting like he thinks I can control this, somehow. Or like if I could just "get happy" this whole thing would go away. He actually referred to FM (now he took this back later, said I took it out of context) as a "mental illness". But when I try to explain how these things make me feel he says that I'm totally projecting my doubts and feelings onto him...like I think he doesn't want to be around me, so I interpret his actions as not wanting to be around me....
    Is any of this making any sense? Anyway, I'm kinda at the end of my rope, here. I never ever dreamt that we'd be in this situation. Suddenly having to realize that most of the plans we made for our future may be out of my reach unless my health drastically improves.
    I know this is just really hard because we're both still grieving, but any suggestions on how your loved one dealt with your diagnosis? I've even suggested that we see a therapist separately or together who can navigate us through this rough patch, but he seems to think this whole "problem" (with us, not my illness) is in my head, of my own making. Help?! Any advice? Would even be good to know that another couple got through this hard part and then things got better....

    Any words of wisdom? Anyone? Thanks!
  2. nje

    nje New Member

    SO SORRY YOU`RE HAVING TO GO THROUGH THIS. I WAS THE SAME WAY;I`VE BEEN BATTLING FM AND PROBLEMS WITH HUBBY FOR 2 YEARS. BUT MY HUSBAND IS BASICALLY A GOOD MAN AND I KNOW HE LOVES ME; BUT AT FIRST WHEN I HAD TO CHANGE MY LIFESTYLE DRASTICALLY,GOING FROM BEING A GO-GETTER,ALWAYS READY TO GO WITH HIM ANYWHERE,ANYTIME WIFE TO A (LUCKY IF I GET OUT OF THE HOUSE ONCE A WEEK WIFE)I HAD THE SAME FEELINGS YOU HAVE ABOUT YOUR HUSBAND,BUT I DECIDED RIGHT OFF THAT I WOULD HAVE TO FIND A WAY FOR HIM TO UNDERSTAND THAT IT WAS A DISEASE AND THAT I WASN`T JUST LAZY,SO I HAD HIM COME WITH ME ON A VISIT TO MY RHEUMY (DR.)MY DOCTOR WAS KIND ENOUGH TO TRY TO EXPLAIN IT TO MY HUSBAND AS BEST AS HE KNEW HOW,HE TOLD HIM HOW FM WORKS,THAT IT WASN`T ME BEING LAZY OR NOT GOING WITH HIM EVERYWHERE LIKE I USE TO WASN`T BY CHOICE,BUT I COULDN`T BECAUSE OF MY LIMITATIONS,IT WAS SLOW BUT GRADUALLY HE HAS COME TO TERMS WITH MY ILLNESS AND HE`S SUPPORTIVE NOW,BUT I TRY VERY HARD TO REST A LOT DURING THE WEEK SO I CAN GO SOMEWHERE WITH HIM ON WEEKENDS. A LOTS OF TIMES I STILL CAN`T GO,ESPECIALLY WHEN I1`M IN A FLARE-UP WHICH LATELY HAS BEEN ACTING UP A LOT ,SO MY ADVICE IS TAKE HIM TO THE DR. WHO DIAGNOSED YOU AND IS TREATING YOU FOR IT
    IT CAN`T HURT AND IT MAY WELL MAKE HIM SEE YOUR ILLNESS FOR WHAT IT IS;SOMETHING YOU DARN WELL DIDN`T ASK FOR,BUT NOW YOU HAVE IT,SO HE WILL HAVE TO ACCEPT YOU ON THOSE TERMS
    BUT LET HIM KNOW THAT YOU ARE THE ONE SUFFERING AND THAT THERE WILL BE TIMES YOU WILL BE ABLE TO DO SOME OF THE THINGS YOU AS A COUPLE DID BEFORE FM. BECAUSE IF YOUR DR. GETS YOU ON THE RIGHT MEDS;YOU WON`T HAVE TO SUFFER NONSTOP.
    HON I HOPE THIS WILL HELP YOU,IT WORKED FOR ME:AND IF ALL ELSE FAILS ASK HIM DOES HE REMEMBER (IN SICKNESS AND IN HEALTH)? THATS ONLY IF ALL ELSE FAILS. JUST ONE MORE THING
    MEN ARE VERY DIFFERENT FROM WOMEN ABOUT BEING SICK PERIOD;THEY TEND TO WANT TO STAY AWAY FROM YOU ESPECIALLY WHEN YOU ARE AT YOUR WORSE. I HAVE BEEN HURT OVER THAT ONE THING MORE THAN I CAN TELL YOU BUT AFTER HEARING OTHER WOMEN TELL THE SAME THING,I KNEW IT WASN`T BECAUSE HE DIDN`T CARE OR DIDN`T LOVE ME BUT THAT MEN ARE JUST A TOTALLY DIFFERENT BREED WHEN IT COMES TO SICKNESS,I PERSONALLY BELIEVE IT SCARES THEM TO SEE YOU LIKE THAT,SO NOW IT DOESN`T BOTHER ME NEAR AS MUCH AS IT USE TO. HON IF YOUR HUSBAND LOVES YOU ,TRUST ME HE WILL FIND A WAY TO DEAL WITH IT.HE WILL HAVE YOUR GOOD DAYS TO LOOK FORWARD TO.YOU DIDN`T SAY IF YOU HAD CHILDREN OR NOT,BUT IT WILL BE EASIER ON YOU IF YOU DON`T,BUT IF YOU DO AND THEY ARE OLD ENOUGH THEN DELEGATE CHORES THEY AND YOUR HUSBAND CAN DO TO HELP YOU. IF YOU CAN AFFORD IT,HIRE SOMEONE RELIABLE TO CLEAN YOUR HOUSE;I HAD TO HIRE ONE OF MY GOOD FRIENDS TO COME CLEAN MINE EVERY 2 WEEKS,BECAUSE IT TAKES ALL MY ENERGY JUST TO DO SIMPLE TASKS.I WILL PRAY FOR YOU HON BECAUSE I KNOW WHAT YOU ARE GOING THROUGH.SORRY I WAS SO LONG.HOPE IT HELPS YOU . NJE
  3. Rose_Red

    Rose_Red New Member

    Sweetie,

    I know exactly what you're going through. I was only married a couple years when I got sick and it was like getting hit with a sledge hammer. It is hard on a marraige, especially when it hits like this. If you can, try to se it from your DH's point of view.

    He's angry that you're so sick. He's probably angry at God for screwing up his life. It kills him to see you like this. It sounds like he just can't take it 24/7.

    As hard as it is for you (you're the one in pain) it is on him to learn how to live a whole new life. This really puts a strain on 'in sickness and in health till death do us part.'

    You're sick and upset. He's scared and upset. You guys need to come together and just love each other right now. It sounds like he's trying to deal with it. Even by not being there. As long as you don't think he's fooling around (my hang-up) then give him the space and time that he needs. You have friends, family, the computer and the telephone.

    As hard as it is - try believing him whn he says I love you. If all you do is fight it's not a surprise that he wants to go out.

    FMS isn't a mental disorder but it will cause depression no matter how hard you fight it or deny it. You NEED to stop feeling guilty - you didn't ask for this. By getting married you agreed to care for each other no matter who got sick!

    You both need to educate yourselves about FMS. You're trying to explain something you don't understand and he's trying to understand what's not being explained. It's a catch-22.

    You can get or order books from your library. the first 2 books you need are Fibromyalgia & Myofacial Pain Syndrome by devin starlynol(?) and Fibromyalgia for Dummies by Dr. Roland Staud.

    Try to read these together. Include him in your dr's appointments. This way he can ask the doc himself and start to get unconfused.

    As difficult as it may be - it does sound like you're projecting a little and who can blame you? Certainly not me - I've been where you're at, except I was in my eaarly 20's with an infant.

    Stay here with us and learn about your illness. Have your husband check out the site - he can post questions also. You guys can make it if you don't turn on each other.

    Try telling him "I just need you to hold me right now" and snuggle in and let him support you - feel the WUV (love). That'll do more for you guys than a week of arguing.

    -michele
  4. Rosiebud

    Rosiebud New Member

    this is a very difficult situation. I was only with my husband 3 years when I became ill and it took its toll on our relationship. However I am very lucky that we both came to terms with what was happening.

    I believe that my attitude helped my husband come to terms with our situation. I went through one year of 'bereavement' from losing my job and since then I have accepted my illness and I cope with it very well.

    I still have times where I feel sorry for my husband, he had to give up work to take care of me, but he doesnt feel sorry for himself.

    Yes we went through the hard part and it got better so dont lose faith in you or your husband.

    love
    Rosie
  5. lvjesus

    lvjesus Member

    You have FM, you are not FM. You do not have to give up all your plans and hopes for the future. You can get better, but you have to give both of you time to come to grips with this DD before you can move forward.

    The fear will subside and you will stop, hopefully, obcessing about it. When I was dx, I thought of FM nearly 24/7 and read and thought about it some more, and what COULD happen to me and what would I do if this happened.....You get the picture.

    I got over that and you can too, but it takes time. Think about it like this. If you were dx with cancer, the same thing would happen - the adjustment period I mean. A bump in the road takes time to recover from.

    You will recover if you want to bad enough (from the shock, I mean) and figure out how to go on from here. It is just another factor in your life and you have to work it in, just like any other thing, like a new job, having to move, having a baby, etc.

    Eventually, you will absorb the details into your plan and go on. Trust your hubby to go on with you, but give BOTH of you time to get used to this idea, but don't take a fatalistic view.

    Many can and do get better and can function. I was dx in March of last year, began to "get over myself" in the last few months and have been treating the worst symptoms as I learn and progress. I still work full time and although I get tired and am in pain some, I manage to make it.

    It is true that some cannot, but if there was ever a thing with no mold, this is it. Everyone has it differently.

    Keep your chin up, if you don't have faith, I strongly urge you to investigate it. Jesus is the best support partner in this world and beyond.

    God Bless, keep reading and learning and we will do what we can to lift you and your DH up.

    Sonya
  6. rileyearl

    rileyearl New Member

    I'm so sorry you have fm. It's such a shock. I was diagnosed in July this year.

    One thing that really helped my husband's understanding of what was happening with me was to get him to go with me to my first appointment at the Fibromyalgia and Fatigue Center. We spent an hour with the doctor and she gave us both an education, as well as diagnosing fm, cfs, thyroid deficiency and ibs. After the chat with the doc, the lab drew 37 vials of blood and then I had an hour-long IV of get-well-quick nutrients and vitamins. It was a real wake up call for him. Before we went, he was coming up with all kinds of ideas to minimize the symptoms and assign them to something less serious. Talk about irritating!

    My DH tends to look at illness as a competitive sport. If I get a sore throat, he gets a bad cold. If I have the flu, he has a worse strain of it. If I have a headache, he has a tumor. When I got pregnant, he was SOL. And fm is even worse because it doesn't stop after 9 months!

    Denial is the first stage of grief. You both are grieving now. The next stage is anger....

    Do lots of reading on this message board. There is so much information and kind support here. Not many people who don't have fm or cfs themselves are going to be very sympathetic. My mother-in-law told my 4 yo son that once I lose weight, I'll be just fine--then he told me. I was tempted to knock her down, but I loaned her a book on fm instead.

    Take care!

    Francie
  7. lvjesus

    lvjesus Member

    that cracked me up, your husband thinks illness is a competitive sport! I wonder if it is just yours and mine that do this, or is the compulsion widespread with men???

    You know how they are in bed for a week with a cold...

    Sonya
  8. KJ2003

    KJ2003 New Member

    Steve and I are newly married, as well. Right after (and I mean, right after) we got married, I went off of all my medication due to growing fear of dependency and long-term effectiveness and use of various pain medications when I get older. I was on MS Contin and hydrocodone.

    Coming off of these medications all at once was probably the dumbest thing I've ever done but, NOW, I'm glad I did. However, after the inital few days, I figured I would feel better, but I didn't. As a matter of fact, due to pain levels, it was as though someone took my life force right out of me. Feeling as bad as I did, it was hard to conjure up any good feelings at all. I became irritated over the least little thing (unlike me) and disconnected from everything and everyone. For me, when I hurt, I lose energy thus lose my ability to find joy in life...no matter how hard I try and fight it (and I am a fighter).

    My husband was so confused and afraid. He had married one person but, here I was, someone completely different. We went a few rounds and, even though we could understand each other's position, it didn't help the situation any.

    I finally went to the doctor about a month ago and began new treatment for my diagnosis' (plural) and it has helped tremendously. My pain levels are down thus my energy has returned. And even if a particular medication makes me drowsy, it is NOTHING compared to the lethargic conditions I experienced while dealing with my problems without being treated. Again, that was STUPID to do on my own and if I EVER feel my medicines aren't working again, I will have the doctor slowly take me off of them and then we'll regroup. Right now I take Tramadol and Neurtonin for pain.

    As far as sex drive, mine was depleted, along with my body's ability to produce ANY hormones, due to my condition but, since then, my doctor has switched my hormone pill from Estrace to Estratest, which also includes Testosterone. This has made all the difference in the world and has helped 'matters' immensely.

    I hope this helps. Sometimes, when our bodies are injured internally, it can cause major repercussions with our hormonal system. You might want to discuss this with your doctor.

    Chin up,

    Kim
  9. fivesue

    fivesue New Member

    This is all new...to you and your husband. Adjusting to such a dramatic life change takes longer than a month. I can't imagine having to deal with this at your ages, but I do think it can make your relationship better in a different way. In time, when the shock and the grief begin to wear off, I hope you will be able to talk and to generate some alternate plans even if it is for the short term. Once you get an agreement to focus on days instead of years, maybe things will fall into place more readily.

    Your husband may be a person who just wants to fix it and since he can't, he may feel powerless and thus somehow inadequate. I know my husband wants to fix me..."Is there anything I can do to help?" "Maybe if we do this, you will feel better!" All he does is to help me, but being who he is, a male, he wants to make it all OK...and he really can't.

    It's a process, and I believe you two are starting. I pray that you will be able to talk to each other and take comfort in the fact that you love each other and are in for the long haul. That way you can both be part of the solution.

    You might also reassure him that new meds are just a short time away, and these may help us gain more stamina and energy. Finally we have come to a time when we are being taken seriously by doctors and the drug companies are trying to create meds that will help...and they will be rewarded with huge monetaty gains if they develop something to help those of us with FM.

    Hang in there...it's one of life's happenings. I am sorry it has hit you so young!

    Hugs,
    Sue
  10. orachel

    orachel New Member

    I know all of you are right.....Its just that this is SO NEW to us. I was a determinedly single person at 28...on career track with no desire to marry or have kids. Then I met my wonderful husb, and ALL of that changed somehow. Was still working, but my priorities were him and the future we would build together (and hopefully family!).
    This diagnosis came at me from left field...its been only a month, and my docs just aren't overly optomistic. I've heard 30-40% recovery is best they expect from me, and that flipped me out even more!!!
    About your suggestions....all of them were great, some funny as heck, and many I've tried. I did take dh to rheumy with me...the first rheumy I saw. The imbecile compared FM to Schizophrenia bc both involve levels of serums in the brain, and totally gave dh idea that FM was somehow caused by depression....Don't see that doc anymore, but he caused most of the problem!
    I've read some of your suggestions "Letter to normals" was great...on way to library to get the rest. I've been keeping a computerized journal with articles and studies about FM I've found, with my thoughts on each, so DH gets and idea of where I'm coming from....I probably should have mentioned it, but he's an ENGINEER, so hes all about fixing problems, and he's having a hard time being faced with this and not being able to fix it.

    Oh, and the illness as a competative sport thing cracked me up! I used to date someone like that. I had a terrible cold, then he managed to convince himself he had pneumonia (but wouldn't see a doc!) and missed his Med school application deadline....that's a weird thing some people do, I just don't get it!

    I think one of my biggest issues is pain control. I really am in constant terrible pain (as are most of us), and since my diagnosis, they've taken me off all narcotic pain meds (which I understand). But strongest thing I'm on us ULTRAM (tramadol, I think), and so far its just not working. I know it improves with time. So what happens is I literally suffer all day..can find no relief whatsoever from the pain, and then DH comes home in late evening when I'm just totally frazzled and fried by trying to deal with the pain all day. I need to really talk to my doc about finding something to relieve pain at least for a few hours a day, to give me some breathing room. Plus, he just started me on aquatic therapy, which hurts like heck and I'm totally down for count like 2 days after each session.....I guess we just haven't found a good mix of meds and phys therapy yet.

    I really appreciate all the support ladies. We recently moved to the area, and we were both so caught up in our careers (sigh...) that we didn't really make any friends here. Then suddenly this happens, and poor old DH becomes literally my ONLY support, which is unfair to both of us. We'll figure out a way, but I really appreciate all the kind words, and just knowing I'm not alone in this suffering is like, HUGE. Thanks All!
    Rachel
  11. Rose_Red

    Rose_Red New Member

    If you're down for 2 days and in THIS much pain your physical therapist is having you do too much !!!!!!! Explain what's happening when you leave PT. As soon as we put our hurting bodies in that warm water all the hurt goes away along with quite a bit of gravtiy. You literally weigh less and it gives your muscles a break.

    I would absolutely tell your doc about the pain that you are in and that you require breakthrough pain meds. You take your Ultram normally but you add a 2nd pain pill to the mix to help with the pain the ultram doesn't touch.

    If you're home all day - pamper yourself. take a nap. Take a bubble bath. you don't have to impress anyone but you. I know it sux but it's something we learn to live with.

    michele
  12. pinkstar

    pinkstar New Member

    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".

    -------------------------------------------

    some days, there are only a couple of spoons for us.. others, we have plenty.. i'm still attempting to explain this to my live-in boyfriend.. i'm not sure he can handle it, since i am still struggling with accepting it.. but the above should help someone without a disease understand our struggles..
    -Lauryn
  13. orachel

    orachel New Member

    Quite frankly, made me think abt being sick in a new way. I'll ask my husband to read it, and we can hopefully discuss it together. I really appreciate the thoughtful post. And also, some early posts suggested some books, "FM for Dummies", etc...my local library put in a request for all of them and will call me when they arrive. Thanks again, all.
  14. rileyearl

    rileyearl New Member

    Wow! The spoon story is wonderful! Today is a 12 spoon day and I used 11 before 8AM.

    Also, the guy whose hypochondria caused him to miss medical school cracked me up!

    Orachel! I was trying PT for awhile and it didn't seem like they were doing very much, but after 5 sessions I came to the conclusion that this flare is never going to go away if they keep messing with the worst of it.

    So, I decided to try massage. I've had 2. The first one was given by a man who thought I needed all kinds of stretching AND he yammered the whole time. The second one was done by a rather stoic young woman, no chatter, just soft answers if I had a question. Her touch was perfect--not intrusive, but ever so relaxing. That night and the next day I had hardly any pain. I'm going back to her.

    About your medication, if you are in so much pain, you might need to take something like vicodan or even stronger. I don't go the the doctor to get a lecture about becoming a drug addict. I go so he can help me have a semblance of a life. The only way I can get things done while I'm in this flare is to take 10mg of hydrocodone. Am I worried about addiction? Not one bit. If it became a problem ever, it would be another phase of this DD. There are lots of people on this board who are able to get by on herbal or other pain treatments. You need to do what works for you. And if your doctor doesn't work for you, then he/she needs to be replaced!

    Can you tell I feel strongly about that?!

    Take care!

    Francie
  15. orachel

    orachel New Member

    I feel same way abt pain meds. Docs were throwing vicodin and flexeril at me hand over fist when we thought my prob was just a sprained back. After diagnosed with FM, they immediately took me off all narcotics. I'm like OK, still in massive pain, here! I have bigtime doc appt tomorrow with my Physical Medicine doc, and will discuss pain mgmt in a big way, as the amt of pain I'm in can't be as good as it gets. Thanks for your post!!!

    Oh, and I've always been hugely into massage therapy (long before I got sick), but my dh recently went to a wellness clinic for a massage for a pinched nerve, and the clinic called me to pick him up and take him directly to the ER. The massotherapist had so aggravated his injury that he had to have a shot of MORPHINE! Was just terrible! So, now I'm all freaky deaky about going to massage place I'm not familiar with. Plus, now I'm sick I'm so dang broke its not an option anyway. lol
    Rachel
  16. ldbgcoleman

    ldbgcoleman New Member

    One thing I have learned about men is they want to fix things. My husband has been very frustrated because he has always been the go to man when anything has gone wrong and he has no control over my illness.

    I would also like to say that you can and will get better than 30-40%. That is balony. The day I started getting better was the day my Rheumy said find a support group. That made me mad and I found a Dr who could actually help me. Finding the right Dr is key to getting better.

    My husband goes to my major Dr appts with me and when this started I had him read articles and part of a book so he could understand this. He has seen my put up the fight of my life and has actually gained respect for how I am handleing this. Our relationship has become stronger. And No he doesn't understand. The only people I have ever found who truly understand are on this board.

    If he were in a car accident and incapacitated you would stick by him. Thats what marriage vows are about.

    You have to take care of yourself and tackle your symptoms. Try to find a good Dr and work hard to get better. Do not give up. It is very difficult but you can do it. Good Luck and take care. Lynn

  17. orachel

    orachel New Member

    So sorry took me so long to respond!
    Every single thing you said is exactly what was going on, and since then, things have gotten IMMEASURABLY better! And by the way, we improved things by doing exactly what you suggested...research research research. Together! And I'd love it if he could come to doc appts. He did come to one major one (and whew! That was with psycho Rheumy who called FM a "mental illness", which is what caused the confusion/frustration with my husband in the 1st place!), but my Wonder Husband is a Nuclear Engineer, in the midst of MAJOR projects and deadlines at work...working 70-80 hr weeks. Its totally nuts! Plus, his work stress (though he LOVES his job...lucky boy!) is just compounding our new situation. But lemme tell you....it's just been amazing between us lately. Hes been incredibly supportive and willing to work with me to come up with SOLUTIONS to how we can attempt to "normalize" our life, even within the limitations I'm dealing with right now!

    And you know what? YOU ARE 100% RIGHT when you say 30-40% improvement is bunk! Hooey! Nonsense! And Negativity at its finest. All of you wonderful people here have completely changed my "attitude" and "altitude" in terms of FM within the last few days, and I can truly say that women like you (and this group in general) have been one of the true "blessings from above" in my life. I don't know if you've been around, but even the tone of my posts and my internal self talk has been LIFTED up by all the support I've gotten here, and with my wonder hubby!

    As a matter of fact...dont want to sound like a total nutball, here, but I've even realize that even though this DD (Grrr.....) is wretched and painful and all that jazz, there may have been some incredible benefits to this seemingly awful "affliction". Renewed sense of determination, faith, hope, postitivity, and willingness to help others is a pretty amazing thing, even if it is gained through something unfortunate like a crappy health situation! Plus, I have no doubt that with tons of research and tons of work, I can lick this nonsense. And if it does affect me in some way for the rest of my whole dang life, such is life, right? And there are so many who have to deal with so much more struggle! Look at katrina victims, for crying out loud!

    So. Whew! Marathon post, but I did wanna get back to you after all your help and support and the time and energy you used to try to offer me some comfort. I also wanted to let you know that what you said really did make a difference (for the positive!) in my life....

    Thanks so much, and here's wishing you Health and Hugs!
    Rachel

    OMG...Fog!!!! I almost forgot funniest thing and what I most wanted to share with you!LOL...
    My husband is a NUCLEAR ENGINEER! What you said about men wanting to "fix" things? Ohhhh....darlin'. Take that normal tendency that I think is a trait of most men, and multiply by 10!!! My wonder husband fixes things for a living, and it is just a totally intrinsic part of his personality, overall. He actually just sorta "came clean" to me that so much of his seeming irritated, or defensive, or even avoidance of me and the issue at hand is due to fact that he literally was becoming physically nauseated sitting next to me and watching me rock and moan in pain (cuz, yes. Right now I am in very severe pain, but seeing doc on monday and we're gonna fix that asap!). He literally got sick because he felt so WRETCHED and USELESS because he was unable to FIX ME!!!! Aren't you clever?! LOL
    [This Message was Edited on 09/17/2005]
  18. Mareeok

    Mareeok New Member

    So that's the story of the spoons. It is incredible and I have a list of people I want to email it to. Can I have your permissiion to do that? Please...please.