Discussion in 'Fibromyalgia Main Forum' started by Jordane, May 29, 2006.

  1. Jordane

    Jordane New Member

    There are very few,around me,and a LOT outside who do not truly understand how sick I am.

    Most look at you and unless you look like your dying,or have some physical ailment of somekind that they can see,
    does not get it,that we are sick!!!!

    I have had my MIL with me since last Friday.When she got out of the hospital.Yes she is elderly,and weak from not doing much since being on her back or just setting.

    And I am truly doing all I can to help her.She is moving to an apartment.I packed,and still packing to get her ready to move.Found her an apartment to live in.Made the call to hook her power up.Got an apointment for her phone & cable people to come and set her up.

    Been driving her around town to get her hair done and pick up what she needs.Make the meals,wash her clothes,clean up behind her and hubby.

    I have run out of steam a looooooooong time ago.BUT noone is helping me out here.They think I am ok.And expect me to do it all.

    My lol I am soooooooooo tired.I would LOVE to be waited on this way.My hubby does not understand what this is costing me.

    I am just hoping I will soon be on my own so I can try to recoup.But I dont see it happening anytime soon.We still have to set MIL up in her apartment!!

    SO sorry to be so long winded.I probably have no reason to complain,or feel a little sorry for myself.I am just so tired!!

    How many of you are finding it hard to make your family and others understand that you are REALLY SICK!!!

    Soft hugzzzzzzzzzz to you ALL!!!!!:>)
    wish for you a pain free,relaxing week!!
  2. NyroFan

    NyroFan New Member

    You are doing a good job.
    Sometimes it is better to be busy helping others to get out of our own heads.Bless her, beless you.

    [This Message was Edited on 05/29/2006]
  3. Lolalee

    Lolalee New Member

    that they think you are ok because of all you do. I sometimes think that of my situation. I hate this illness and sometimes I push myself and try to act like I can do the things I used to do. And then I think...if someone saw all I push myself to do they would not think I feel sick at all.

    I sometimes think that the only way they "get it" is if we get in bed and stay there.

  4. Marta608

    Marta608 Member

    The more we do, even when we struggle, the more people think we can do. They don't question what it costs us because they can do things so much more easily than we can.

    You've been a trouper. Now go lie down and take a hard-earned rest.

    Hugs back to you,
  5. cinnveet

    cinnveet New Member

    here is a quote:
    "Never try to teach a pig t sing. It's a wast of your time and it annoys the pig"

    Not everyone will be receptive or supportive. It's not just difficult for healthy individuals to understand what we are going through; it's impossible. They may try to understand, or think they understand, but they cannot full understand. Their mispreceptions may be unintentionally hurtful.

    Healthy people do experience similar symptoms, although less frequently and severely. Such statements as "I get tired , too" and "You're not the only one who's forgetful" cause us to feel discounted. Trying to convince skeptics usually proves futle.

    Some times it is time that we need. And in due time the ones that care the most will start to understand.

    God Bless,
  6. libra55

    libra55 New Member

    I am a bodacious, outgoing blonde who always tries to look my best. I always do my hair and make up and try to coordinate my outfits. It takes me a long time to pull it all together because I am in horrible pain and just dog tired and I don't move fast at all.

    I have the double whammy of FM and Crohn's Disease. I also suffer from asthma. The fatigue is unexplainable to normal people, a 15 on a scale of 1 to 10. Yet because I look so good everybody thinks I am fine, or that I exaggerate my illnesses. (They should have a look at my blood chem profile if they think I am fine!)

    I have a tendency to "push and crash" although that is changing as I learn how to pace myself and not be so concerned with what others think of me.

    We must take care of ourselves and I'm trying to do more of that. It's hard. Even my own husband doesn't believe I'm as sick as I am. He expects a clean house, kids taken care of, laundry done, and meals on the table. It just doesn't happen. I use to bust it just to get all this done, now if I'm ill I stay in bed or just rest. I still do try and keep up my appearance as that's important to me, although I've been told it works against you if you go to court for disability.

    Take care of you first.

  7. UnicornK

    UnicornK New Member

    I love the way the reporter ended it.

    By David Emanuel
    Staff Writer
    Bowie Blade News
    Thursday, May 18, 2006

    Imagine living with a disease that leaves you wondering from one day to the next if you can even walk again.

    Imagine being in pain, be it mild or sharp, pretty much 24 hours a day, seven days a week.

    Imagine being tired all the time and thinking just few hours of sleep is a blessing.

    That's what 47 year old Kathy Winger lives with daily, and there are millions of others like her.

    She suffers from a combination of fibromyalgia and chronic fatigue syndrome, diseased recently deemed "real", as Winger said.

    Chronic fatigue Syndrome is a debilitation conditioncharacterized by severe fatigue and profound exhaustion that cannot be explainedby and underlying medical condition. The fatigue in CFS is extreme and bears no relation to the fatigue a healthy person feesl as the result of a busy life.

    People with CFS also have poor stamina and find that normal daily activities, such as showering or making the bed,can cause exhaustion and breathlessness.

    Fibromyalgia is chaacterized by severe musculoskeletal pain, and often this disease and CFS go hand-in-hand.

    Fibromyalgia is also an illness that involves every part of the body, and has many other symptoms as well, that may include impaired memory or conecntration, sore throat, muscle pain, nausea, insomnia and neurological symptoms.

    Recovery from CFS and fibromyalgia are not guaranteed. Some people will have the condition for the rest of their lives, some become completely disabled, housebound or bedridden.

    "I've gone from doctor to doctor and many of them still don't acknowledge these (diseases), she said.

    Winger said she's not sure when in her life the diseases actualy started (it is often difficult to determine), but it's certanly been in Winger's life for quite a lomg time, since she was in her 20's.

    Sometimes called the "Yuppie Flu" (and those suffering from this hate the term, said Winger), CFS is far from being a disease that leaves you tired and overworked.

    "Not everything hurts every day, but something does," she said. "The pain moves. One day it's in your foot, the next it might be in your arms. When I get up every morning, I ask. 'Well, what's gonna hurt today?'"

    Friday [May 12] was Chronic Fatige Syndrome and Fibromyalgia Awareness Day, and Winger hopes mpre people become educated that this is a real and dibilitaing disease.

    "There are still a lot of doctors out there who don't understand it, and just chalk it up to depression," she said. "Many stillsay it's all in our head. But there is testimony out there form millions of people suffering from from this who will tell you otherwise. They'll tell you its not a matter of having to exercise ot lose weight. And as for depression, that is a secondary symptom. It is a result of having CFS that a person gets depressed, not the other way around."

    Winger takes 32 pills to get her through the day.

    They help, she said, and on some days she doesn't have to take some of the pills, others, she may take them all.

    "A good day for me is what it feels like for you when might have the flu," she said. Just kind of tired and drained. Some day I suffer from a migrain. Other days my lims just hurt."

    So how does she cope every day?

    "You kind of mentally find a way to block it all out, and you have to surround yourself with people who support you. I don't know what I'd do without my husband, who's been so helpful and supportive through all of this," she said. And you have to have a sense of humor about it. You have somehow keep a bright outlook."

    Winger said she knows people who have committed suicide over this.

    "You just have to be secure enough in the knowledge that there are some treatments, and maybe someday, a cure." she said. it hasn't been determined whether this is a genetic disease or not.

    "I don't want this disease to take my life away from me," she said. "I stay involved in things. I have my limits, and I accept them. I do what I can do. I realize, for example, I'll never play volleyball. I can ('t sic) be a judge."

    Winger said the most important thing people need to understand about CFS snd fibromyalgia is that the people suffering from them aren't lazy.

    "We aren't lazy. We aren't slackers," she said. "We are sick!
  8. sisland

    sisland New Member

    You just have to stick up for yourself! and pace-pace -pace! Tell your MIL that you can only do 1 or 2 things on the list each day do to your illness, give her options (like "we can get your hair done today") but there will be no shopping today!,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,Just putting my 2 cents in. I had to learn everything the hard way over and over again ! my dad comes to visit every once in awhile and after 2 or 3 days (of him pretending that he's helpless) ................................................and i do everything for him! Believe me i'm ready for him to return home where he takes care of himself just fine ! My brother and sister live close to him so they look in on him everyday !
    Don't get me wrong i love my DaD but there is no way i could take care of him!! not with this illness!......................take care of yourself! sisland

  9. Lolalee

    Lolalee New Member

    That is what I was trying to say. I agree with you 100%. If you look and act like a healthy person that is how you will be treated.

  10. CockatooMom

    CockatooMom New Member

    Jordane and fellow sufferers:


    I OFTEN feel like NO ONE around me understands what I go through on a daily basis. I am exhausted from getting a shower, doing my hair and make-up. I only do this because it makes ME feel better, but I can't do it every day.
    I also get exhausted and breathe heavy from making the bed. Cleaning house it a NIGHTMARE!!!

    I have pushed myself to the limit and beyond for TOO many years and didn't realize it until I found this website. My husband WAS supportive in the beginning, when first diagnosed, but he seems to have forgotten how much pain I am in EVERYDAY!!!! And so has everyone around me. My father doesn't think there is anything wrong with me.

    I never complained about the pain much. But, as I get older, I find I am in MORE pain. My mind thinks I can still do what I want, but my body says NO. I, like may of you, have SO MUCH wrong with me I hate even going to the doctor with a new ailment for fear of being labeled a hypochondriac. I need to be re-evaluated for MS and CFS. I KNOW I have CFS, I have just never been "formally" diagnosed.

    Dncfngrs: you are right...if I act normal, I am treated normal, but if I take care of myself and refuse to push myself, I will be treated as I really am - SICK!

    I'm just waiting for my husband to tell me the since I found this website that I "seem to have more pain" than I used to. Besides him, I think I was the one in denial.

    I love you all SO MUCH and thank God I found you!

    Gentle hugs and lots a love,

  11. KMD90603

    KMD90603 New Member

    In fact, I just posted "CFIDS and expectations" regarding an argument my hubby and I got into. It had to do with exactly that. I'm doing as much as I physically can, yet he seems to want me to do more now that I'm on summer vacation from school. The problem is...I could work more than 16 hours a week, but at what cost? I feel like I barely have the energy for my 5-year old son now as it is. He sees me sleeping on the couch all day. I try to take him to the park for a couple hours each day, so I feel like I'm getting him out and he's having fun. But even just picking up one extra shift a week, I fear, will leave me exhausted and give me less time to spend with my son. Because for every day I work, it takes 1 full day to recouperate.

    It sounds like you are definitely stretched way too thin. Maybe you could sit down with your hubby and tell him exactly how you're feeling. Tell him that even though you may not look sick, you ARE sick and need him to remember that. I mean, we have enough skepticism from the rest of the world without our own loved ones contributing to it. The amount of things you are doing would be a lot for any normal person. But for someone with this disease to do all of that, it's extremely difficult and tiring.

    Not sure if this was much help. I pray that you get some time to recover from all of your hard work, and ASAP. Gentle healing hugs,
  12. painandagony

    painandagony New Member

    I hear ya. i just posted about my realtor giving me a hard time. Why do I care what she says? Because I'm so blasted tired. Period.

    We're not alone....thank goodness for this board.
  13. sjogrens

    sjogrens New Member

    Sometimes Making myself look good helps me feel better, even though I feel like crap. Only this backfires because people then think if you look good you feel good. I hate it because I look awful so much and feel bad. I try occasionaly to look good. I try to trick myself into feeling good. thanks Lisa
    [This Message was Edited on 05/30/2006]
  14. Jordane

    Jordane New Member

    You are ALL such a blessing.I know you all understand how comforting it is to come here and get support,help and understanding.

    I want to marry you all!!!:>)

    As far as make up or polishing myself up.I dont,I understand the ones who do.Its a way of having a bit of control.If you feel like S***,then you say,well I cant fix the inside but I do have the control of this,making yourself look nice.It boosts your self esteem.Nothing wrong with that!!!

    I dont use it now,because frankly I just do not have the energy to put it on or take it off.It is one other thing that I would have to do.Even wearing earings is too much work.As for my hair,its white,short,and fuss free.

    And I have told my hubby how bad I feel.He sees me take gravol,all the time for the sickness.He sees that I am totally wiped out.Knows that the bulk of looking after,and getting her stuff packed up to move,is on me.I even asked him to take a week off and help out.He wont,except to bring the truck in to move her.

    Maybe I should lie down in front of the truck.That way he would have to run me over or listen.

    I am sure you are all facing dilemas of your own.Thanks for the hugzzz,prayers,and love,sent to me.It means a LOT!!!

    Please take care of yourselves.Rest,get pampered when possible.Keep on telling to whoever will listen,that yes we are really sick!!! It is not our imaginations!!!

    Jordane :>)
  15. springrose22

    springrose22 New Member

    They won't understand how sick you are as long as you keep working yourself to the bone and doing for others like you do. Period. Does that make sense to you? Tell everybody that you can only do certain things like possibly drive people somewhere. But, packing, taking care of someone else, etc. No way. I couldn't do it and I wouldn't do it. If you want anyone to wait on you, then you better sit down! LOL By the way, how did you make out with your CPP disability application? It was you, wasn't it? Take care. Marie
    [This Message was Edited on 05/30/2006]
  16. PGWS

    PGWS New Member

    I could not agree more with your description of this nightmare disease. I am a sufferer for 4.5 years
    Lucky you, someone cared enough to allow you to express yourself and put it in print.

    I wrote to Dr. Phil with my story, because I was and still are so desperate for help and also thought it would be another way to bring more public awareness, but he never got back to me. I guess he would rather have shows on topics of which people "can" help themselves, but choose not too. I may try Oprah.

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