Struggling to accept this illness.

Discussion in 'Fibromyalgia Main Forum' started by Michelle_NZ, Apr 12, 2006.

  1. Michelle_NZ

    Michelle_NZ New Member

    I've had CFS for about 2/12 years now, but during that time I had about 15 months of remission.

    Now that I am sick again, I am starting to understand what it means to actaully have this illness. I didnt really "get it" before, as I was really only very sick for about 6 months.

    I read many posts on here, and peoples bios, and to tell you the truth, it freaks me out sometimes. Many of you have been sick for sooooo long! It scares me.

    How do you do it? How do you accept this is what your life is now and get on with living it?

    I am struggling with this. I'm feeling so sad about the loss of what I had, and the future I thought I had to.

    I know that I need to accept CFS in order to be happier, but I really dont know how to. Sometimes I just want to scream "I don't want this!"

    Those of you that hvae been sick for a long time, when did you finally stop fighting and start accepting it? How did you do this?

  2. elliespad

    elliespad Member

    Good question. I have been sick 27 years, since age 21. Completely Disabled since age 31. Currently 48.

    The only way that I manage, is by NOT accepting that I will be like this for the rest of my life. That is too much. I HAVE to continually research, to learn new things to try. It is EMPOWERING to be PRO-ACTIVE. I cannot give up hope that I will find my cure, or at least improve. To accept that this level of disability is forever, is NOT part of my mindset. There ARE things we can do to help ourselves .

    Some people have achieved significant improvements, often after YEARS of relentless suffering. Just some things that have helped people:

    * Prayer
    1. Tons of different supplements.
    2. Hormone treatments.
    3. Massage
    4. FarInfrared Sauna
    5. Exercise, when appropriate.
    6. Mental Imagry, relaxation techniques
    7. Reiki
    8. Physical Therapy
    9. IV nutrition therapies
    10. PRAY some more
    11. Probiotics
    12. Mineral and detox baths
    13. Prescription meds
    14. Did I mention PRAYER?
    15. YOGA/TAI CHI

    For years I prayed that God would heal me. I had been in a particularly hopeless feeling state for quite some time with no reprieve. One day, I changed my PRAYER, asking God for WISDOM. Asked him to show me what I needed to know to help myself.

    I had given up researching, because I hadn't found anything new to explore, for MONTHS. Kept finding the same stuff over and over. Immediately, that same day, I stumbled onto a great website concerning Amino Acids. Spent months researching these and eventually sought treatment with a doc using these. This doctor has helped me more than any of the other 40-50 I have seen over the years.

    So now, everytime I reach the end of my rope, and think I have researched EVERYTHING, I remember to pray to GOD that he would give me WISDOM, and IMMEDIATELY HE SHOWS ME SOMETHING new. I'm not kidding! He comes through immediately.

    So, to answer your question, basically, I ACKNOWLEDGE I have this, but I don't accept that it is not possible to heal/improve. I will NEVER give up my DOGGED PURSUIT to find my cure, and that is how I do it. By being STUPIDLY OPTIMISTIC :)
    [This Message was Edited on 04/12/2006]
  3. ABLUV

    ABLUV New Member

    Dear Michelle_NZ, my heart goes out to you. I hope your read these messages and receive the heartfelt sympathy and encouragement we offer on this site.

    You've had a long remission and I'm so happy that you did. Even though it has ended I am happy that you had 15 months of freedom from this horrible illness. I hope you took pictures, wrote in your journal, or went to the beach; I hope you created fond memories that give you comfort on the worst days. If not, I hope you at least know that remission is possible and it could happen any day and when it does...WATCH OUT WORLD, HERE COMES MICHELLE!!!

    Your comrade in battle against CFS,
  4. ABLUV

    ABLUV New Member

    My remission was only 5 months. I was sure it would not come back but one hot August day, my life crashed again. I was devestated. The grief was so heavy, I felt I would suffocate and die from it. The loss of health is such a great loss,esp. when you're young, it feels like someone has died, and in a way they have - the old vivacious me...

    It took me two in a half yrs to accept CFS. My mind just couldn't wrap itself around the thought of such a horrible loss, it felt like my mind would explode, trying to understand why, Why, WHY??!

    Most of the people I've talked to say it took 2 to 3 years to settle down emotionally and begin to learn coping skills. So I would venture to say that your time of acceptance was postponed becuz you were so sick for 6mos. then remission.

    I eventually accepted that I needed my medication, this helped me with the oppressive depression and the tremendous pain in my body, which in turn enabled me to have hope that I could make it no matter what came my way. Before I accepted the meds, I was so very depressed that tears would run down my face for hours and I couldn't stop them; the pain in my soul was just as bad as the pain in my body. I never knew how much anguish a person can suffer with depression until it happened to me. When I finally took the meds the way they were prescribed, I found relief from the ever present storm cloud that hung over me nite and day.

    In the process of 2 1/2 yrs I found a support group in my local area (this helped me sooooooooooo much!!), I read books about the disease and research about ways to improve my condition as well as books that helped me to cope. Coping doesn't mean that I give in to the disease; it means I'm rolling with the punches life throws at me. It means I may be knocked on my rear end from time to time but I aint out for the count-I'm gettin bak up! Coping gives me a chance to dream and hope. I think of ways to help someone else through the storms in their life and I find it so rewarding. In all of this, my relationship with God has been so helpful in acquiring a positive outlook in spite of CFS and I thank Him for helping me through it all. He's the best friend I ever had in my life....

    Please write again and tell us how you're doing, okay? Please don't give up. Try some of the things that are suggested on this site, even though it may not cure you it can improve some of your symptoms....

    Hoping for a brighter day for you,
  5. painandagony

    painandagony New Member

    Initially it took me quite a few years to accept I had CFS; I just couldn't believe this was my life. I still can't believe it sometimes. I am in agony 24/7. Who lives like that?

    I would say do research, do whatever treatments look promising to you, but don't worry if you just can't be bothered with any new regimen either. I go in spurts.

    I have really turned to God and trying to find out what life is about. Is there meaning to all of this? For some reason the universe wanted us to experience illness, even though it is horrible, unfair, and one of the worst out there, as it is so chronic, longterm, and untreatable (for some of us).

    I try to look at the positive things I've learned; I really know and understand human suffering. I can empathize with any person I meet. Who do my friends come to when they have a problem?? I know the importance of my friends, family and spirituality. I try to find humor all around me and I am forced to not care about where I should be in my life. All my friends are living their lives, working their careers, taking care of their babies, driving SUV's, living in their huge, new homes, and feeling great, not trying to simply stay awake each day, but that's the way it is.

    I accept that I am sick, that I have been sick for a long time, and will continue to be sick for some time to come. But, I too, refuse to believe it will be for forever. I'm only 35, I've got a lot of life to live yet. It better not be like this. But if it is, I will deal with every year as it comes. Which I have been doing. I went through college and grad school. I am writing a book with a friend of mine. I got married a year and half ago. I am sick, and everyday is a struggle just to stay awake, but I have still accomplished some big things. I'm still me. I love my husband, I love my friends, I love to laugh, I love to smile, I love to make people laugh, (of course all of this happens occasionally, not often like I wish it would). I love my nephews and I still plan to have a baby in the next year. I am going to be exhausted anyway, why not have a little bundle while I'm at it. I know it will be ridiculously hard, but I have great support and I just know the fatigue will be worth the love I will have for my child. So, although I have to deal with the exhausting fatigue and everything else that goes with it, day in and day out, the illness has not taken over. I am still living my life, just in a different way and a different pace.

    Another thing I have done is reframe things whenever I can. I am wondering if anyone else has done the following: Sometimes I make myself think about the fact that at least I live in a house, with a fantastic bed, hot water any time of day, all the food I could ever want, clean water, etc. People who live in third world places suffer constantly and they are people too, just like us. Why them and not me? Why me and not them? It's how I get through sometimes. It really could be worse. However, there are plenty of days when I just plain feel bad for myself and cannot even think about the fact that things could be worse, because they could be a lot better too.

    Anything you can say to yourself to get through it is good. it's hard to do anything when you feel terrible, but whenever you can get the energy to do something you'd like to do, do it.

    I have to say I have a lot of friends who are supportive. They understand as much as they can, and when I do go out, I just want to go out and have fun. I usually don't want to sit and bitch about how I feel. Don't get me wrong, I can if I want to, they're ok with it, and sometimes I do, but usually I am sick of me, and I want to hear what everyone else is up to. I live vicariously through others. I can't keep up activities with them, but I can keep in contact enough to keep up friendships.

    I could go on and on. I don't know if you're in therapy but I love my therapist. He is great. He will let me bitch, swear, moan and gripe as much as I want. But he also likes to talk about the good things in my life, so the focus is not always on the bad. I've always thought of myself as so weak, but he reminds me just how strong I am. I don't know why any of us have to go through this horrible thing but I guess what it all comes down to is this: We do have this illness and we have every right to be pissed off, but try not to be too pissed, that you miss your life. I hate the saying "Life is 10% of what happens to you and 90% of how you react to it" but it's true. It's hard when you're eyes burn, you literally can't get out of bed, you're in pain, etc. But, I try to live like that as much as possible. Some days I can't, but some days I can.

    Also, you have had a remission!! As far as I'm concerned that is a great prognostic indicator. You have been in the dark, dark tunnel and come out of it. I have never once come out of my dark tunnel. Your body has the means of repairing, maybe it will repair itself again!!!!

    I hope this helps. I am way too exhausted to reread what I wrote so I apologize if I got off topic.

    Take Care
  6. Michelle_NZ

    Michelle_NZ New Member

    I must say it is so good to know there are other people who TRULY know what I am going through and how devastating it is to live with this.

    I had some counselling last year (to help me cope with the loss of my brother), but during the counselling my CFS started coming back, and I really got the impression they thought I was making it up, or exaggerating my symptoms to avoid doing the psychological work. I felt completely unvalidated and it kind of put me off therapy, but maybe I should find someone who is specialised in CFS.

    I have days when I feel so down and miserable and helpless that I cant imagine how I can possible live like this.

    I really admire all of you who have been living with this for so long.

    Thanks for your posts.
  7. Jgavi

    Jgavi New Member

    Glad you posted this subject-

    It took 10 years for me to accept this! Yeap! Ten years to say to myself "I am sick, I have lost my life as I knew it"

    So now what?
    I am waiting to die or a cure to come by...

    Its sad and an awful way to live but I have to be thankful that I can still take care of me!

    So many people cant walk, are blind, fighting cancer...etc.

    If you see the good side of this (which is very hard to do) you can accept this new way of life-

    I have seen way to many people struggle with other horrific diseases...count your blessings, it could be worse!

  8. rosemarie

    rosemarie Member

    I have good days and days that are not good in anyway shape or form. I hear this daily from my girls who all don't live at home. " Mom all I want is for you to be the way you used to be"

    But the problem is I don't know what I used to be like. I hvae feet like this for so long that I don't remmeber how to just let loose and tease them like i did, but then they were at home and smaller not all grown up . So maybe I should tell them that I will be the way I used to be if they will be like they used to be at 15,11,&9. I will be the carefree mom that I was then if they will go back in time so I can. But that is not going to happen to I have to accept me like I am now.

    I can do things now that I once thought I could not do. I am comforatable staying at home. And not working. But I still have the feeling that I should be working and it is not possiable any more.

    So I have to take a look at myself and see the things I can do. I CAN drive my car, I CAN Play with my grandson,
    I CAN walk, I CAN be happy when I choose to be. It is the choosing to be that is hard to do. I want to be the old me and that makes me sad. I now have to think of all that I can do and do the things that I enjoy doing and make myself understand that yes I live in pain and little sleep but there are many people worse than me.

    A dear friend told me this. She was talking to her neighbor who told her that watching Karen manage her life and her 5 kids with no husband always made her feel better. Karen assked her why and she said that when she saw Karen she knew that her own life was better and had less pain in it than Karens did. And it made her understand that no matter how rotten or bad your life may seem there is always someone who has it worse than you do.

    Now I am happy for Karen she has married again and her kids are grown and she is so happy and that makes me feel happy too.

    So while today may have been rotten tomorrow has the possiaby of being better if I will but let it.

  9. mme_curie68

    mme_curie68 New Member

    I had a hard time accepting my dx also.

    I was angry because it was probably the last dx I wanted - I wanted to find out that whatever I had could be diagnosed and treated directly, not in the oblique way FM is "treated" by addressing the symptoms and not the "cause" (yet anyways).

    But I think I had a helping head start towards acceptance because I belong to a twelve-step recovery program and acceptance is key to maintaining a life in recovery - or else I'll go right back to doing what I was doing.

    Now its kind of like, okay, I have FM - what am I going to do about it? I had to make lifestyle changes whether I like it or not because otherwise FM is calling the shots, not me.

    I ask for help and I pray to God to help me understand and relieve the burden of this DD. I can only control so many things - this disease is not one of them.

    BUT I can help myself each day and do what I can do to help - diet change, adding supplements for nutritional support, adding meds for physiologic support, yoga, and talking to other people on a daily basis who understand me and what I'm going through - this provides the emotional support I need.

    No matter what your physical condition, you can have a decent quality of life with adequate supports in place. I pray for all of us that we have access to the care we need, the medicines we need and the emotional support we need.

    Madame Curie

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