Discussion in 'Fibromyalgia Main Forum' started by Kathleen12, Aug 26, 2006.

  1. Kathleen12

    Kathleen12 New Member

    At the risk of sounding unsympothetic to my SIL who was just dx with lymphoma, I became more aware of how little understanding others are toward our disease.

    She was just telling me of how exhausted she was standing in line at a casino to recieve her ticket. So she told an employee there that she has Lymphoma and cannot stand in line. The employee hurried straight to the desk and got her ticket for her when all she asked for was a wheelchair.

    I know she is exhausted even though she has not started chemo yet, but I wonder if I told an employee that I had CFS and needed a wheel chair if I would get the same treatment. Would he direct me to a sofa to wait on until the line got shorter? Would he tell me he'd find a wheel chair for me but never return with one?

    Is it because Lymphoma is fatal and he was just showing sympathy to someone who's days are now numbered or does he not know what CFS is and that we cannot stand for more than 5 min. without either passing out or having to just sit on the floor until we get our turn at the desk?

    I AM very worried about my sister-in-law and know that she may not have more than a few years left on this earth, and that those years are going to be unbearable at some point. But I cannot mention my disease because it is only miserable and not fatal.

    Sorry, guess I just needed to vent about this a little. She had her first fund-raiser today and I had to help in spite of my obvious inability to do so. Do you all understand?
    [This Message was Edited on 08/26/2006]
  2. Marta608

    Marta608 Member

    Yeah, I do hear what you're saying but I still wouldn't want to trade her. I'd give her all the wheelchairs and tickets she can use and call it good.

  3. Kathleen12

    Kathleen12 New Member

    I posted this before I read it over and realized what a whiney-baby I sounded! I am so sorry for leaving the impression that I begruged my SIL her desreved treatment. Yes, I definatly would give her anything she wants and needs and will help in any way I can. The words just did not come out right at all.

    I mainly wanted to point out that CFS does not seem to be treated seriously and that those who think they know anything about it just thinks "oh, she gets a little tired sometimes".

    Marta, thank you for your reply and I hope that if you're a praying person, that you will keep her and her family in your prayers. She has NO insurance at all and is not sure how she will pay for the surgery to romove her spleen next week and then begin the chemo sessions.
  4. octobermarriage

    octobermarriage New Member

    I feel like how my pains or illness could be much worst and that yes I am alive. I also know that my quality life on more that 75% of my days is less than average. I have to lie in the bed or sit in a chair on ice or a heating pad. My house doesn't get cleaned like it should and the kids have to spend a lot of time watching movies. I feel that while I am here physically; I am not really here with them. Sometimes that guilt is pretty overwhelming.

    The person you ask for a wheelchair looks at you and thinks well, "she looks just fine to me." Just tired.

    My sympathy goes out to you because I have been in your shoes, "everytime I venture out to Wal-Mart for big grocery shopping."

    Hang in there.
  5. Pennygirl2

    Pennygirl2 New Member

    Hi Kathleen,
    i certainly know what you mean. Don't feel badly about the posting. And when our quality of life is this impaired, to where we need wheelchairs and staying in bed, well it is hard to be in our shoes as well as cancer patients.
    I am sorry about you SIL. I will pray for you all.
    I was considering going on a flight to see mom (just couldn't make it, I decided) but I was going to tell reservations I have MS, need a wheelchair in airport and help with baggage. It is sad, but true. Try not to take it too seriously. And don't feel guilty about using another illness at present time til we are better understood--we will be, right??????
  6. findmind

    findmind New Member

    Who said CFS is not fatal? It may take 20-30 years, but according to almost all the latest research, our organs are being attacked by viruses and bacteria, and they are being damaged, especially the very thing that keeps us alive: the oxygen transport system.

    Please read some of dr. paul cheney's reports of how patient's reach the "event horizon", of heart failure because we do not pump enough blood INTO the heart (called diastolic heart failure). Maybe you could print it out, to remind you that your illness is actually saving your life my making you sit or lie down so your heart is less tasked.

    The ads in the now on-going national campaign say this illness is very serious. Maybe you could print something from the hummingbird's org. website, as it has a lot of truth's about CFS.

    I understand what you are saying, dear person, and I really agree and sympathize. I tell anyone who can help me that I look good, but if I stand here 5 minutes, I will be on the floor and they will call an ambulance, that my blood pressure drops and I faint. That gets me shopping scooters and wheelchairs very easily wherever I go!

    Maybe one way you can help your SIL is to go to her house and lie on the couch to be near her and with her when the going gets rough. Tell you you're glad you can sympathize with her, as you understand how badly she feels even though your illness does not progress as rapidly.

    I know you'll be there for her as much as you possibly can, and you will be blessed for it.

    Best wishes to you and your SIL.

    There's always hope!
  7. springrose22

    springrose22 New Member

    When I need to sit or lie down, I always tell someone that I'm feeling very unwell, and somebody always helps. Generally, I don't tell strangers that I have CFS. That's too complicated. Marie
  8. Kathleen12

    Kathleen12 New Member

    I am feeling much better now that I know you all understand. I was afraid that I was being too selfish. And a selfish person I am not and really never have been.

    When I was a therapeutic instructor and the fatigue got so bad after a lesson, I had to collapse in the office befoer I could go back into the arena and clean up. We have volunteers to do that but I just could not bring myself to ask them to pick up for me while I sit in the cool office. And most of my volunteers are in their 60s and older. So I would smile at them, thank them for their hard work, and tell them "you are now released from duty". After they have left, I would drag myself back out there and clean up. Asking for help has never been easy for me. I just could not imagine asking for a wheel chair! But if I did, I just do not think that I would be treated any differently than someone who complained about being a little tired.

    By the way, I never knew that this disease could be compared to someone who is going through chemo. Thank you all again. :)
  9. 1sweetie

    1sweetie New Member

    You are 110% right. I have survived breast cancer twice and serious precancerous conditions. Please feel free to read my bio.

    It was not fun and I was very sick is just like you said. The cancer did not take my cognitive abilities. It did not change my personality. I was able to go back to work. Friends and family and my employer treated me great. People sent flowers, food, & cards. There were so many flowers and cards. My Mom and many others helped me the whole time with food and I had volunteers begging me to take me to treatments and to places to cheer me up. You would not believe how well the ENTIRE medical profession treated up. I was pampered by everyone. They made me feel special.

    Nothing and I mean nothing resembles the way I have been treated now. I can't believe it. It is so hurtful. Now everyone just thinks I've been through so much it must be my "nerves". I am jealous too so don't feel guilty. I know the really know the difference and it hurts that we are treated this way because there is no test to prove we are sick.

    Don't feel bad...I feel the same way. This disease has killed the old me and messed up my entire family. I really feel that it is worse.
  10. morninstar

    morninstar New Member

    How many CFS patients have we heard about taking their lives because no one would listen. I talked to my sister a few minutes ago and she says that she can not go on. What do we do? I have been diagnosed with the illness though it is not yet causing me this serious set backs. But i have watched my sister for 10 years go from an athlete to a bed confined person. I do understand your thoughts about cancer vs cfs, no one ever questions the terminally ill cancer patient but not many people ever lend a sympathetic ear to someone with this disease that totally takes your life away....don't feel guilty..some of us understand and YES WE WILL continue to PRAY.....STAR
  11. Leaknits

    Leaknits New Member

    CFS IS, IS, IS a life threatening disease.

    More specifically it's a life-stealing disease. It surely stole mine.

    Too many people, especially those in whose hands we have to put our health care, don't believe in it.

    Too many health care people, if they DO believe in it, haven't the least clue as to what it is, what it does, what it means to the patient and they don't much care to be enlightened.

    If I hear one D****d more time when I mention Chronic Fatigue Syndrome "Oh yes, I get tired a lot, too..." well, I would say I'd cheerfully strangle the person saying that but I don't have the energy.

    Too tired, you see.

    I've lately decided to stop calling CFS "chronic fatigue." I'm going to start calling it's what it is called in Europe and, maybe, some other places: Myalgic Encephalitis.

    And to think that recently I said I didn't care what the d'd was called.

    I hereby eat those words. Would someone please pass me the ketchup?

  12. MsE

    MsE New Member

    I understand 100% . My sister has MS. Now there's a disease with a name that gets attention! Would I want to have it? Of course not! Do I begrudge my sister the help she receives? Certainly not! But do I wish CFIDS had a recognizable name that was not associated with pathological hypochondria and emotional illness by so many people? You betcha!
  13. Leaknits

    Leaknits New Member

  14. Kathleen12

    Kathleen12 New Member

    Hi guys,
    I almost forgot about this thread and thank you for getting it back on the front page.

    Ya know? I've been thinking about the name change that everyone has been suggesting on other threads. I now beleive that may be part of the answer we need to help us be taken more seriously. But it is a strange thing. I don't know of any other disease which has had a name change. But it just may help.

    Thank you all for the wonderful replies. I do feel alot better now.

    By the way, I just learned that my sil is in stage 4 of her cancer. It's gonna be very tough for her and her family. Keep her in your prayers.
  15. ABCDfamily

    ABCDfamily New Member


    CFS is life threatening to the point of death. We do know too that it's life debilitating. CFS is an immune system problem so to me it seems that could be life threatening in itself. Our bodies do not fight against illness the way normal healthy bodies do. God forbid we get the birdflu or some other serious outbreak, we could start dropping like flies. Normal healthy people would have a much higher risk of living through something that could potentially kill us. To me, and again, I'm not an expert but I call that life threatening. Just my two cents for whatever it's worth.

    I can tell by your second post that you felt terrible about your first post. I know you love your sister in law and I'm so sorry she has to go through cancer. I'm also sorry that you have to endure what you have. I understand your feeling of guilt, I've recently gone through it just a couple of weeks ago myself. I had a friend that was in and she has stage 3 bone cancer, it's not looking good for her. We had plans to get together when my daughter was diagnosed with Coxsackie virus. Cancer patients cannot be around anyone who is sick with even a minor cold since the meds they take lower their immune systems. To make a long story short she and I never got together and I pray it was not my last opportunity to see her. It's a long complicated story of guilt on my end because I feel like I can't do enough for her and we have not spoken since she left. I think what I'm going to do is send her some money, as you may know cancer is very expensive. Enough of my rant, my point was, it's very difficult for you too so please do not discount yourself. Your immune system is down and the best thing you can do is take care of yourself so you can be a support to your SIL. Remember, that once something becomes a burden on us we are no longer helpful. I'm not implying that your SIL is a burden by any means but more that this could burden you as far as a potential load you may carry around.

    I will keep you and your SIL in my prayers
  16. barbinindiana

    barbinindiana New Member

    is all I ask for. My best friend had a heart attack 4 years ago. Her heart completly stopped, and if she hadn't been in ER when it happened she wouldn't be here today. She had to have a triple bypass. When she got home from the hospital, she told me "I'd rather have what you've got than this."

    At that moment I thought and said "I would too." But later I thought about it and thought heck NO! I was at the hospital when she had her bypass, and after her operation the doctor came out to talk to the family and I, and said that she would be able to live her life just as she had before.

    He was right. She was able to go back to work, and get the rest of her time in before retiring. Was able to pay off her morgage, get completely out of debit, and pay cash for a new car before retiring.

    She is now able to keep her house spic n span clean, do hard yard work, go on trips, and really enjoy her life.

    I had to give up my job when I still needed it badly. I am not well enough to even think about keep my house clean. I have been so sick and broke that I've thought about ending it all many times.

    This friend buried my poor cat who was in my freezer for months because I was unable to dig a hole for him.

    I am so happy that I still have my friend alive and well, but I wish that people understood how sick I really am, and would just show me alittle respect.

    If they only knew what this DD is really like, they would be amazed at what strong people we really are to be able to continue on day after sick and painful day.


  17. ABCDfamily

    ABCDfamily New Member

    I agree with you Barb, we are very strong people and not by choice might I add. Hang in there :)

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