How did you ACCEPT that you had a chronic illness?

Discussion in 'Fibromyalgia Main Forum' started by Aberlaine, May 28, 2006.

  1. Aberlaine

    Aberlaine Member

    I've been diagnosed with FM for two years (I'm sure I've had it for ten years), but I find that I'm still trying to do what I used to do when I was younger. And I still think about making plans for canoeing, hiking, visiting places where lots of walking is involved (state fair, etc.). I'm retired, and luckier than most here, in that I can pace my activities. Push, crash; push, crash - that's me.

    How did you finally come to accept that you have a chronic disease that will never go away? During the month of May I overscheduled myself so much that I've been exhausted for a week now. (See my post "Out of spoons".)

    My body certainly knows I have FM (pain, exhaustion), but I can't convince my brain to think the same way. I'd hate to have a breakdown in order to believe that I'm sick.

    Thanks a bunch,
    Nancy
  2. Kathleen12

    Kathleen12 New Member

    Even though I have T1 Diabetes AND CFS, I am still trying to consider myself as being a healthy 43 year old...with a couple of "issues".
    My husband and all of his family keep telling me that I am not well but like you, my mind just refuses to accept it, though my body is SCREAMING at me. Though I have learned not to plan for anything. What ever I do has to be at the moment only. I am still hoping I can get down to the bottom of this fatigue.
  3. Jana1

    Jana1 New Member

  4. lenasvn

    lenasvn New Member

    I have no problem accepting, I grew up with ill family members who kept on living regardless. What I can't accept is the ignorance from some people, and even worse, the ignorance from some Physicians.
  5. lovethesun

    lovethesun New Member

    to do them. For instance the fair.Take a wheelchair or rent one and take breaks so that you don't get dehydrated or overstimulated.There are always ares of the fair quieter than others.Hikes(try again using a wheelchair],a walk through an Arboretum.

    These are just suggestions.I also was diagnosed 2 years ago and cannot walk well most days.I do crafts when I'm not feeling up to going someplace.You are still you.but you need to change the way you do things and accept your limitations.Linda
  6. diva42597

    diva42597 New Member

    Now...this is going to sound strange, but why do you have to accept that your problem is chronic? I have accepted that there is no cure. But I refuse to accept that I can no longer do the things that I enjoy. If you enjoy going on day trips and enjoying time with your family, do it, but know when your body needs to rest. Your body craves movement and it actually helps your condition to keep a positive out look and get daily physical activity. If you simply roll over and accept that you have a debilitating illness, you are now depriving yourself of the things that make you happy and, therefore, affecting your outlook negatively. Do the things you want in moderation. Accept your body's limitations. Stop when it hurts. But continue to live your life and manage the disease. If you cancel plans or plan around the disease...it's managing you. Personally, I'd rather control it than have it control me.
  7. Marta608

    Marta608 Member

    Accept it?

    After 11 years I still haven't, not really. It's like age. That, too, I somehow think of as curable, something I'll just get over someday. Sure, I'll die....!

    Even right now, in the midst of being as sick as I've ever been with this illness, only rarely does the "A" word occur to me. I think that I believe that if I accept it, I'll stop trying to get well. On the other hand, 11 years of trying hasn't gotten me much......

    If you figure out how to do it, will you let me know?

    Marta

  8. rachel432

    rachel432 New Member

    i'm not sure that i really have accepted that i have this thing and i'm notsure that i ever really will. i still try very hard to push myself to o the things that i ued to do, things that i would consier to be normal. istill work 4 nights a week and i still try to work out when i can. i spend a lot of time sleeping. way more time then my husband does. it's wierd, i have so much trouble falling asleep most of the time but once i am asleep i don't want to wake up. i get very tired easily but i find that i keep pushing myself no matter how tired or how much pain i'm in. what this causes is for me to spend so much time being very frustated at the way my life is going. i find that i get very depressed and angry quite easily. i feel that if i were to accept this things may be easier but i would feel like i gave in or just gave up. i want my life back and i'm going to keep trying to have as normal of alife as possible no matter wat i have to do to get it.
    i hope this helps.
    rachel
  9. suzette1954

    suzette1954 New Member

    I too was diagnosed 2 yrs ago. Im now seeing a psychologist along with my other drs. Ive planned my death a couple of times and that scared me tooo death. I need help accepting this and the limitations it has brought.

    Suzette
  10. Michelle_NZ

    Michelle_NZ New Member

    I dont know how to accept it. Sometimes I cry and scream how unfair this is, how I dont want it.

    If anyone has any advice on how to go through this process of acceptance I would love to hear it.

    Take care
    Michelle
  11. Adl123

    Adl123 New Member

    Dear Nancy,
    This is really a good post.

    Just today, I came to the realizations that I am having a hard time acceting that I'm old, and that I'm sick. As soon as I start feeling better, I start doing all kinds of things, that reault in something catastophic. A couple of days ago I had a bad fall on the cement and will be laid up for at least a week or two as a result. I'm lucky I didn't break anythng. I tore a minscus and probably chipped my wrist, but I can live with that.

    I think that , subconciously, I feel that if I totally accept my limitations, I'm givng in, and ,therefore, giving up. When, in reality, it is just the opposite.

    I think it's human nature.

    Good luck,
    Terry
  12. victoria

    victoria New Member

    I find it much easier to accept that I've been fighting something physically caused, ie a stealth pathogen(s), than that I was somehow failing in life due to psychological problems or self-sabotage...

    I always felt like I had mono since I had it for a year at 18, but every time bloodwork came back negative for the usual causes of fatigue, I got brushed off with that 'mental dx' when all I wanted was to feel good/have energy so I could get on with my life and accomplish goals.

    And I sure experienced a few hard lessons over ignoring symptoms!

    On the other hand, my 18 yo son (chronic lyme, positive according to CDC standards) was initially relieved to know he actually had something physically wrong with him, but then the reality of the chronic part surfaced quickly.

    So he still gets mad at himself in order to get himself moving, altho he always pays for it & crashes ultimately... I think beating himself up mentally over having a major illness is NOT a constructive way to handle this; neither is denial which is his other coping tool...

    Any chronic life-altering illness is extremely hard to deal with for anyone, I think, and I think many if not all of us have to repeat 'stages' quite often...esp if there is a relapse.

    all the best,
    Victoria




    [This Message was Edited on 05/28/2006]
  13. xchocoholic

    xchocoholic New Member

    Nancy,

    I haven't accepted that I have an incurable chronic illness, but rather a chronic illness that someday they will have a cure for. Meanwhile, I am trying to eat healthy, maintain a positive attitude and excercise.

    I try to have fun as much as possible, too. I would certainly go camping, etc. if the people I was with understood I was ill and were willing to carry the load while I rested. I can't possibly paddle a canoe, but I can sit in the middle with a life vest on while others paddle.

    You asked for a reason to help you slow down and pace yourself. I heard years ago that those who rested early on in this illness were more likely get better quicker and not have as many complications or get as sick in the long run.

    Something about avoiding the crashes because they are hard on our bodies. Sounds reasonable, but I have no idea where I heard it. Sorry, but my memory is shot right now.

    The most important piece of advice I got about coping was from a CFIDS friend of mine in 1998. She is Mom, too. She told me to concentrate on what I have and not what I have given up. In my case, I had lost a career, etc. but had become a "stay at home Mom".

    I had been depressed off and on up until then. That's when I finally realized how selfish I was being by not putting my child first.

    Aparently, it worked out ok, since she just graduated high school and will be attending college in the fall. : )

    And I haven't been depressed since 1998. I just needed a new purpose in life.

    Hugs ... marcia


  14. victoria

    victoria New Member

    yep, that is the hardest part, not being hard on one's self, something probably all of us have the hardest time with...

    I also think we can't help but compare ourselves to others and their accomplishements, and can't help but feel tinges of jealousy and envy at times with the thoughts of "would have, could have, should have, etc." ad infinitum...

    I also feel that altho we may not be able to be 'cured', I'll be very happy with putting the symptoms into 'remission'!

    Victoria
    [This Message was Edited on 05/28/2006]
  15. BlueSky555

    BlueSky555 New Member

    accepted it. I'm always telling myself, "I'm going to----- but haven't yet. But still, I'm going to-----. I just keep planning things also, telling myself that. I was telling family members that I would do something and as the time came closer, I would change my mind and cancel.

    Maybe one day I will either do what I'm going to do or accept it.

    This thread has me thinking as well; AM I going to or not???

    Thanks for the post Aberlaine,

    BlueSky555
    [This Message was Edited on 05/28/2006]
  16. Juloo

    Juloo Member

    I've been dealing with CFs for 8 years. This long out, I've read the statistics of ever being 100% cured. Like others here, I still make plans, and I keep on trying.

    But in the long run, I think I'm just scared silly -- so much so that I hide behind the Scarlett O'Hara approach...I'll just worry about that tomorrow. That isn't my usual approach to things, but it is tentatively working for the moment.
  17. springrose22

    springrose22 New Member

    I HATE the push, crash syndrome. So, I decided I wouldn't do it anymore, so I had to ACCEPT that I am not able to do things the way I used to, otherwise, I made myself terribly ill, and couldn't do anything. Some are confusing accepting that you can't live like you used to with giving up and lying down and not living at all.

    If you don't accept that you are chronically ill, then everything you do to "live" will be full of pain and/or malaise. Choose to cut back on activities, do things more slowly, and surround yourself with understanding people. Push and crash is no way to live. Take care. Marie
  18. Hope4Sofia

    Hope4Sofia New Member

    I've been actively fighting my symptoms for 15 years but just got my diagnosis in Feb. SO, though I'm glad to finally be validated that I'm not lazy, etc, I certainly haven't reached the point of acceptance.

    I get close sometimes but there are still so many questions. Mostly, I just haven't done all the testing yet to know for sure that nothing else is at play.

    Actually, I don't know if I'll ever become convinced that this is just FM since even the med community doesn't know what FM really is. Maybe if they discover a reliable diagnostic test for FM - then I might be convinced.

    I get depressed thinking this is forever. I know I have gotten dramatically worse over the past two years and that scares me. I'm only 33. I have so much more living to do.

    Maybe it's just acceptance that we are fighting something or that we aren't normal. Other than that it's Deny Deny Deny....

    Sofi
  19. Juloo

    Juloo Member

    I have this weird thing where I read something, but my mind inserts letters or re-arranges them, and I get something entirely different. It's not dyslexia...it doesn't happen all the time, just once in a while. But when it does, and I realize it, I usually laugh my head off.

    I had to read all the way through your reply to find out who "Denny, Denny, Denny" was. I thought maybe it was someone who took your mind off of it all!

    So sorry to hear your are not having as much fun as I first pictured!
  20. Hope4Sofia

    Hope4Sofia New Member

    Gotta love the fibro!