Discussion in 'Fibromyalgia Main Forum' started by petsrme, Nov 14, 2005.

  1. petsrme

    petsrme Member

    I have been told for about six years now that I have given up and caused myself to get sick. I have shared this here many times, but everytime I hear it I get upset again and need to talk about it. I didn't cause myself to get sick. My sickness did cause me to get sadder and more depressive, but I didn't cause the sickness with them. My problems started 22 years ago with my getting hives in the sun. I then started having back problems and joint problems in my early twenties. Xrays showed the arthritis and blood work showed high sed rates. I don't think I could have depressed myself into getting arthritis. I wasn't even really depressed then. I honestly do think I have always had a tendency to get depression and even bipolar, but I don't think this caused my health issues, I just think the health issues aggravate the mental issues.

    I was diagnosed with fibro in about 1996. They thought I had lupus too, but would then say I didn't because ANA wasn't elevated. I begin to get severe fatigue in about 97/98 at age 29. I started slowing down and couldn't do all that I had. I gained 60 plus pounds in about a year due to inactivity. (I mention this because I also hear the old "maybe your sick because of your weight" speil. They seem to forget that I was thin when I got sick.)

    The back and joint problems got worse and fatigue. I was diagnosed with lupus in 2000 after the ANA was elevated. My point in all this is that I can't see how I caused my illness by giving up. I hadn't given up when I got fatigue and arthritis. I was going full blast and doing a lot. Sure I began to give up a little and concede to the fact that I couldn't do as much anymore. I don't really think it is giving up; it is surrendering to the fact that you have changed. As long as I pick my aching body up out of bed everyday to go to the restroom and do as much as I can to survive I have NOT given up. I am still going. Even if I can't get out of bed someday and still breathe and live it doesn't mean I have given up. Even after the last breath comes out of my mouth I have not given up. My body has just ran out of gas.

    Almost all of my diagnoses are provable by tests. I have shown these to people (MRI's, bloodwork, XRays and doc records) and that still isn't enough to prove that I didn't make this happen with depression and defeat.

    In case you are wondering what set me off today I will tell you. My mom called and as usual she had the attitude that my life is useless, that I sleep it away and just am rotting slowly by my inertia. She told me that she talked to a lady Friday night who is having a hard time because her sister is dying from Lupus. I thought oh here it comes. She then said that the lady told her that her sister was told 20 years ago that she had given up and she would die from this lupus in 20 years if she didn't get out of bed and live life. This lady is dying from multiple organ failure as lupus can attack the organs.

    I blew up. I am usually very wimpy with my mother and just ignore her comments but I said that is a bunch of BS. I said that lady should be ashamed of herself for saying that. Her sister is NOT dying because she gave up; she is dying because she has lupus and it has attacked her organs. Giving up had nothing to do with it!! I said sure not getting out of bed and getting active can cause things like arthritis and back problems to worsen, but being depressed, sad and giving up do not cause your organs to fail. Many many people who are very active and trying their best to stay active have organ failure with lupus and no matter how hard they try they can't stop it. I forgot to add that my mom was telling me this whole story to convince me that I needed to change so I would not suffer this fate.

    Mom got silent and then said, Well I won't be here in 20 years. I said what does that mean? She said at least I won't be alive to watch you die. I couldn't do that. I said well if I am dying from organ failure in 20 years it won't be my fault. I said I might be crippled from arthritis in 20 years and it might be some my fault for not doing more, but who the heck can do more when their legs and feet swell up like pumpkins if they stand more than five minutes. I can't walk for exercise now. It literally makes my legs baloon up to stand and wash a dish. i walked five miles a day as recently as last year. I did it through knee pain and back pain. I pressed on until I fell and sprained my ankle one day when on vacation. I know my limits and know I CAN push myself , but at this point I can't push any more. I am afraid my legs will burst if I did. They swelled so bad about two weeks ago that they cracked and I had huge indentations in my ankles and calves.

    I am so sorry to rant and rave so long and I understand if no one takes the time to read all of this. I just needed to get it out. I know I say the same things over and over in all my posts. I am sorry for that. If you did read this I do want to say that I know depression can cause our illness to be worse. I realize that they go hand in hand, but I don't think all of our illnesses were caused by depression. I also realize that if we don't push ourselves to do as much as we can it can hurt us and inactivity does execerbate our problems, but my point is that it did not cause our problems to begin with. I just want people to realize that and I am so tired of trying to convince people that supposedly love me that. They above all should see the evidence and remember the facts of what happened, not think they know it all.
    [This Message was Edited on 11/14/2005]
  2. petsrme

    petsrme Member

    Thank you so much for responding Fight. I really appreciate it.
  3. Jana1

    Jana1 New Member

    I think you are so pretty and have a lovely daughter and some darling little dogs. You have done a lot in your life with a college degree and human services job. I can't see what your mom has to gripe about. I guess she just doesnt like seeing you laying down. I am sure she loves you but can't accept your illness.

  4. sues1

    sues1 New Member

    We have folks that thinks the "use it or lose it" methods and it is true on some things. But not ours.

    I had some that would give me the "RAH RAH RAH" approach and try to motivate me. They thought I was giving up. (Not true).

    Just listen to the Gambler song. (on card playing)....."Know when to hold them and when to fold them". We learn how to handle our lifes the best we can.

    I sent articles to many friends and relatives, per email and I have a new respect from them. Really do.

    Do a search here for SPOONS STORY and also THE THIEF OF MANY LIVES.........good ones to send.

    Spoons was written by a Lupus patient. Email or print and snail mail various articles to the ones you wish would understand.

    Your Mom loves you and feels helpless. I do not know what to say to help her. But maybe I can give you a hug here...I bet she is afraid of dying and you being a lone. Maybe somehow you can help her? But I do not know how.

    Does anyone here have any suggestions?

    Others will probably remember some of the other really good articles. I am not remembering them right now.

    No sweetie.......you did not do this to yourself! Yes, it does add to our depression. I hope you are getting extra help on it. We have to take care of all aspects of this illness.

    You never know when a cure might happen! Hope it is within my time.
    Wishing you the best and HUGS (gentle ones) Susan
  5. petsrme

    petsrme Member

    Jana thank you very much! I looked at your profile also and your picture is great! You both look so happy.

    Thanks for the comments. I know you are right, it is hard for my mom. I just wish she would ease up on the judgemental attitude a little. I guess she doesn't realize how it come across. I sometimes want to say to her to think about how it is when she gets sick. She isn't very good at introspection and looking into how she acts in the same situations. She has back problems and when hers goes out she is in severe pain. I know that. She has went to bed for three months one time without going out anywhere except to the doctor. I NEVER once told her she needed to get up or do more. I knew she couldn't. The last time this happened she was in bed for three weeks. Even on my worst days I still get out of bed and do something. I know if I had sciatica pain like she does I wouldn't be able to, but I just use that as a comparison.

    She also has a thing about pain meds and narcotics. My doctors never prescribe me any. If they do it is when I have a short term problem like a sprained ankle or such. Then they will only give me a thirty day supply if that. I don't ask for pain meds. I do take muscle relaxers occasionally, i am supposed to take nightly but I don't. She gives me flack about this. She will preach if she calls and I have had to take one.

    Now get this, when her back goes out, or just recently she had a neck problem, she will say to me or others in my family, "I am taking pain medication and I don't care what you say. I am in agony!" I will just look at her amazed because I have NEVER said a word to her about her taking pain medication. I don't know if she is feeling guilty because she knows she has given me a hard time or what. I just don't get it. Why does she think it is okay for her to (give up) go to bed for weeks when she is sick and take pain meds, but it is not okay for me?

    Jana sorry to bother you again, but I just wanted to see if you have any advice on whether or not I should tell her the next time she says something how she does when she gets sick. I am afraid it will make her very angry to compare the situations and she will get defensive. What do you think?
  6. petsrme

    petsrme Member

    Thank you so much Sues for the articles. I also like that song comparison you gave. That is very true. We do have to know when to holdem and foldem, etc.

    Thank you for your kindness and support. I really appreciate it. I hope there is a cure soon for all of us.
  7. petsrme

    petsrme Member

    Hanging how anyone could ever think you uncaring I just don't understand! You summed it all up so great. I guess I just need to learn that if they aint got it by now, they never will! Maybe one day I will accept that.

    I think your mom and my mom should get together and have a griping party just like we do. LOL! I bet our ears would be burning. I would probably burst into flames with all my mom would say.

    Thank you for being a friend. Everyone is so helpful and sweet here.
  8. sues1

    sues1 New Member

    I read your profile and the responses and your responses to them (WHEW)....

    You have great in sight and a beautiful soul. By reading what you have written, it says it all.
    You are a strong person and do well with all you have to deal with!

    Mom said she would not be here 20 yrs. from now to see you die. WOW. Hey Mom, we are all dying from the moment we are born! Who says I will be gone then? Is my birth certificate numbered or something?

    How sad the lady that kept telling her sister that when her sister could of lived those 20 yrs. with love and acceptance instead of being put down!

    I myself do not like meds. But I also do not like my illness. Sooooo......gotta do it.....with thought and learn about what we are taking, etc.
    My brother has RA and would not function without his meds and he is tough. I admire him. If he can be as strong, I can be no less.

    Yes, you are special.......I am glad to meet you.....many blessings...................Susan
  9. trinity3

    trinity3 New Member

    my mother does the same thing to me....over and over and over... it does not matter when the doctor tells her that my illness is very real and not in my head.... it does not matter that i bust my ass every day fighting to hold on to the little bit of a 'life' i still have.... all she can say is that she thinks that this is all because i am depressed or that i have given up or that i am not trying hard enough....

    she even told my fiance that she wouldnt blame him if he wanted to change his mind about marrying me, because, what kind of life could i possibly offer him really....!!!!!

    she is toxic to me and my illness... thank god i moved half way across the country away from her... i would never have a chance at healing with her and her attitude to deal with..

    i know that the general public have no clue about this disease and that alot of doctors dont either... but i lived in the same house with my mother and she SAW how much i struggled and how much pain i was in every day... she just chooses to have this opinion about it and having her opinion is more important to her than having and helping her daughter...

    and by the way... no criticism hurts worse than the criticism of a mother... i can have 10 people in a day insinuate that i am psychosomatic but it never hurts as bad as one comment from my mother....

    okay.. end of rant... ugh....
  10. stinker56

    stinker56 New Member

    treat our illnesses and I am sure it is because they just don't understand how we feel. I am not trying to make excuses for them but I think this is true. In your mom's cause, my guess would be that she is just scared for you and doesn't know how to help you. Sometimes we respond to this fear with words and actions that don't help the situation. Some wise person once said (fog won't let me remember who) not to judge anyone until you walk a mile in their shoes...well walking a mile in any of our shoes would be a very difficult process. My mother didn't understand why I couldn't do more and lose weight. She passed away and never did understand nor approve of the way I had to spend some of my days but if I could have her back to say these things to me I would be thrilled. All I am saying is...try to take it all in stride and ignore her when she or anyone else says the wrong things to you. There is always someone here on this post who knows and understands how you feel and we all care. I don't really have anyone who understands how I feel either close to me. I hope this doesn't offend anyone but I just wanted to say....I wish I hadn't been so hard in return on my mom when she said things and didn't truly understand how I felt, now I can't because I lost her much too early. I hope you have a good day and here is a soft hug just for you.
  11. petsrme

    petsrme Member

    Thank you so much again to all of you. trinity you know I feel your pain and anger. It is so frustrating isn't it. You are so right that it hurts more from your mother than anyone else.

    Stinker, you didn't offend me one bit. I agree with you. No matter how frustrating my mom is, if she wasn't here I would miss her so much. I love her and need her and I guess that is why it hurts so much: she is so important to me. I am willing to put up with her attitude just to have her here. I don't want to lose her.

    Sues thank you again for your replies. you are so sweet.
  12. elastigirl

    elastigirl New Member

    I just wanted to say I'm thinking of you. The mother/daughter relationship is so tough. Those daughters who have Mom on their side seem to flourish. You know first hand the heartache that happens when Mom isn't on a daughters side.

    She does need to respect you though, even if she can't believe you. I had to resort to telling my mother she would have to respect me (not criticize or belittle me,) or I would hang up during our phone conversations. After a few hang ups, she really started to change her tone on the phone. Best wishes :).
  13. petsrme

    petsrme Member

    Thank you elastigirl. I wish I had the courage to do that iwth my mom. She would not forgive me though. I need to try it. Thank you for your support!!
  14. petsrme

    petsrme Member

    I wanted to add that early, early this morning and all day most of the day I spent crying. I didn't know what in the heck had happened. I was reading a book and it just hit me. All the things with my mom, etc. The book had a suicide in it and it the person in the book sounded like me and I just flipped out. I had already been crying off and on, but this just made it worse. I wrote a long rant in my word perfect journal and I mean it was a rant! I then wanted to share it with just one person because I know my family can never see it. They would be very mad and hurt and guilty. I went to the depression board and asked if I could post it, but it is pretty quiet there and no one responded.

    Someone had responded by the time I just checked and said that the rules are the same for the whole message board so I knew I should not post it there either. It had a few suicidal references and I thought that the depression board might allow it since depression cause some to have suicidal thoughts. I thought that as long as you weren't threatening to do something drastic you might could discuss it there. I am so glad now I didn't post it. I knew I shouldn't post it here for obvious reasons (suicide talk is against rules) and I also knew it would offend many since off topics tend to do that.

    I kept having asthm/coughing attacks everytime I lay down. I have been doing this for a couple of days. I don't have a cold or congestion. I would just feel a scratch in my throat and have to cough and then when I would swallow my throat would feel like it was torn or rough almost like a fingernail feels when it is not filed and I would have to cough again. I slept about two hours today and a few yesterday. I hope tonight/tomorrow will be better. I am feeling better now. I had a good cry AGAIN when my husband came home and I told him what happened with mom yesterday. He was upset for me and told me he loved me and I had him to understand what my life was like. Lord I'm crying again!

    Anwya as I was writing that rant I mentioned I realized that I had not taken my paxil for three days. I ran out and my husband has been out of town until tonight and I hadn't been able to pick up my prescription. My daughter got off dance and work in time tonight to pick it up for me. no wonder I have been so emotional. Once again I guess it proves I need to take my meds on time EVERY day. I just forget to get it filled until the last minute and run out sometimes.

    I just wanted to share this, especially if any had popped into the depression board and read my post. I was so grateful to the person who responed to me there when I read it just now. Thanks again to all who take the time to read my posts. You don't know how much I appreciate it becuse I know how hard it is to read long posts and reply.
  15. abbylee

    abbylee New Member

    I've not taken an antidepressant in years, as I am not depressed. I can hardly move, I'm so stiff and hurt so much this morning - but I'm not depressed.

    Depression can come because of the physical restrictions we have and the tremendous fatigue, pain, and loneliness, but it doesn't have to. There is no way that you could "depress" yourself into havine lupus, ms, fms, or cfids.

    The next time someone who treats you this way gets a cold, ask him or her what they are depressed about and suggest an antidepressant - just until their depression is better and the cold goes away. That might make them think before speaking so ridiculously to you.

  16. laura81655

    laura81655 New Member

    I could so identify with a lot of things that you have said. I have been dealing with this DD for over 20 years. I use to walk all the time and can't because of severe swelling in my feet.

    It sounds to me, that you are doing the best you can with the cards that you have been dealt.

    Some days when I can't get out of bed, I say the Serenity prayer over and over -- Grant me the serenity to accept the things I cannot change, courage to change the things I can, and the wisdom to know the difference.

  17. petsrme

    petsrme Member

    Abbylee that was a great analogy and a great suggestion. I think I will use the cold question next time someone says something to me.

    I honestly don't believe that depression causes this either. I do think that stress can break down the immune system and cause a person to get sicker, but I don't think stress causes an illness, just may exacerbate it.

    Thanks again to all of you who have helped me and thank you Judy, Abbylee, Laura and Kristie for your posts today.
  18. Jana1

    Jana1 New Member

    Hello again, Petsrme!

    I hope you are feeling a little better by now after your bout with a deeper sadness yesterday.

    One thing that strikes me in your posts is that you feel you have to justify your illness to others, especially your mom. NONE of us has done anything to DESERVE this. NONE of the well people have done anything to DESERVE wellness.

    I can't tell you how much it has helped ME to just type that! I realized I fall into the exact same thing! Apologizing to my husband when I haven't got much done for the day, or making excuses to friends when I can't go to club meetings!

    Let's get out of this RUT thinking, ok? I am going to come up with a set phrase to say when this "beat myself up" thinking starts.

    How about, "Wasn't today a beautiful day? I'm so happy I am able to enjoy it!" (what can anyone say to that! lol)


    "WOW, another day to enjoy life, how did you do?"


    "Let's not dwell on anything negative today, I just want to talk about good things."

    IF we say it like we mean it, I think it might stop criticism in its tracks, and even change our circle thinking!

    What do you think? Please give me some ideas, too.

    Thanksgiving will be a great time to practice this, as I am grateful for my life and I know from your pic, etc, you have a lot to be thankful for too! (including that sweet husband!)

    Jana, or should I sign this PollyAnna! hahahaha
  19. elliespad

    elliespad Member

    If ANYONE EVER said that to me I would give it to them with BOTH BARRELS!

    Here is my definition of GIVING UP: You decide if it is you.

    One would have to accept that they have a lifelong illness and that you can do little/nothing to change its' course. Then, do nothing except what a Doctor tells you to do. Don't do any research on your illness. Don't ask to try different therapies. Don't reach out to others who have walked in your shoes. Don't write letter/sign petitions on issues that affect your illness, your environment, and medical access. Don't try to maintain relationships that are positive and supportive. Don't try to persue and develop interests not related to your illness.

    If you are guilty of the above, then maybe you have given up. If you work hard to NOT do all the above, then shove it down their throat that NOONE works harder than you to beat their illness. I may not be getting the results I want, but I do NOT sit back and figure I will wait for my cure to be handed to me.

    If anyone said that to ME, they would get an ear full. Christopher Reeve may not have been able to lift a finger, but he sure didn't take his paralysis lying down, did he. (pun intended)
    [This Message was Edited on 11/17/2005]
  20. pirtpain

    pirtpain New Member

    It is very apparent to me that your mom really loves putting you on a guilt trip. More than likely she will never change her opinion on any of this. Boy is she in denial. I know how you feel because my mom was the same

    way, but finally she began to understand. I guess you can provide your mom with more info on the subject of your health, but I really doubt it will change anything.

    I use to have a TYPE A personality, and could run circles around everyone. I struggled for yrs. to try to keep up the pace. I had a real hard time accepting the fact that I was no longer able to keep up. I was feeling really guilty

    and useless. Don't worry about your mom. You are very ill.
    Concentrate on your health & take care!