I NEED HELP!!!

Discussion in 'Fibromyalgia Main Forum' started by MamaDove, Oct 8, 2005.

  1. MamaDove

    MamaDove New Member

    I am driving myself crazy with a question I have been asking myself...

    HOW DID I GET WHERE I AM TODAY???

    If you read my profile you will see I have endured much pain and sorrow...But throughout the 37 years and especially the last 12 when this FMS, CF, arthritis, ulcerative colitis, inflammation, etc...I have been somehow able to continue keeping the house, doing everyday chores, and most importantly WORKING...

    One year ago this week, I felt overwhelmed, feeling worse than I ever have and KNOWING that this was the end for me.
    All the FMS symptoms surfaced among everything else and I would "cry" when I even had to think about keeping the house, doing the chores and most of all WORKING...

    I remember a list of symptoms and priorities I wrote when going to my rheumy appt. and the last line said "I have lost the WILLPOWER I had that was fueling what I needed to overcome and fight these DD's, now I need to live for me, on my terms and my priority is ME, I have finally lost the battle".

    Do I sound like a quitter?
    Do I sound weak?
    Did I actually lose the WILLPOWER that was my driving force?
    Did my so-called depression win the battle?

    I guess my question is...
    What happens to us that forces us to stop working, unable to properly function and enable us to dismiss chores and such that once were a MUST TO DO?
    Is there a breaking point?

    I thought that maybe if I just take some time off to care for me, my reward would be a healthier mind and/or body. It has not happened...

    I am beginning to think I am more crazy than they think I am...Or can it be that the illnesses are just too much to take and this is truly what is like to feel with all of these DD's...

    If it is the latter, the medical community better start taking us seriously and figure this out...

    The worst part for me is having to think/feel that I GAVE UP...

    If anyone wants to comment or set me straight, please do!

    After all this time, this is one answer I should have by now and I don't...I am looking to you all for some guidance.

    I am sooooooooo glad I find this wonderful place, a place where I know someone out there feels alot like I do...

    Sweet Dreams~Alicia

    PS. Some of this comes from guilt, I think, knowing that people out there who have worse conditions than I, do so much more...I am not on a pity-potty, by no means...I feel fortunate to still be walking, talking, loving, singing, etc...So why am I feeling this way???
  2. lana33

    lana33 New Member

    I don't think you are a quitter. Cause if you are, I am also.LOL

    Some people I know personally try to make the ones like me and you feel bad by trying to be martyrs. I am not talking about anyone on this forum.

    When I first stopped working, I felt like you. But I also felt that if I worked till I keeled over and died, I still would not be helping anyone.

    Sort of like in the movie, Forrest Gump, when the officer wanted to die so he could be a hero, like his ancestors before him.LOL

    I really believe if I had stopped working sooner, I may have been well enough later on to work again. But I pushed myself too hard because of everybody involved and now I am limited to what I will ever be able to do.

    Hope this helps,

    Hugs,
    Lana
  3. Mareeok

    Mareeok New Member

    giving up. You body needs a rest. A new set of plans needs to be written up in your heart. You've turned a corner and now have to reformat your mental hard drive.

    You may need only to slow down for awhile and do what your FM tells you to do. Try not to push past the boundries too much. Hopefully after a little while you'll be able to resume some of your previous schedule. But you have to listen to your body now. Fighting it only makes it worse. Some are able to exercise and keep their energy up.

    Get rid of the guilt. Every ones's abilities are unique to each person. Be glad for the things you are able to do. Don't compare against anyone else. Everyone has bad days or weeks or even more. And this week you may not be able to do things you will do next week without too much problem.

    Enjoy your personal victories because it is encouraging to the rest of us and when you are in a low episode enjoy the victories your friends here are having because we want to encourage you in return.

    Heart hugs,
    Maree
  4. elsa

    elsa New Member

    I think it took a hugh amount of willpower and courage to say "enough is enough". You let go of the mundane things that wore what little you had out. It takes guts to stop and say I've got to take care of me before there isn't any of me left.

    I think it might take longer then a year to build back up. You pushed the envelope with alot of illnesses on your back. It might take time to heal somethings.

    I agree that you are eating yourself up with guilt. You need to let that one go. I understand the feeling. I too said "enough" not quite a year ago so I could focus on research and making a plan to get better.

    I repeat to myself when the guilt tries to creep in that this break is for "right now", not necessarily for the rest of my entire life. Only God knows what holds in the future.

    I also remind myself that the break was needed so I could take charge and find my way into remission. It's working too.

    I'm so glad you posted your thoughts today. You need the back up of your friends who understand. Please go easy on you. You didn't get in this condition over night, and as trite as it sounds, you're not going to get better over night either.

    Maybe as you let go of some of the anger and guilt, you'll be able to relax alittle bit. When you do, you might find that your symptoms lessen. I'm giving you permission to take care of Alicia. Next time you get that guilty feeling, just blame it on me! Elsa said for me to do this! It's not my fault, but hers!! LOL

    Maybe it is time to readjust your treatment? Do you sleep? Have you had your hormones (not like peri-menopause, but adrenal,thyroid) checked by an intregrated doctor ... or a doctor well vs'ed in CFS/FM hormone problems?

    Maybe it is time to switch pain relievers in that over time we can get use to what we are taking and find they loose their effectiveness.

    I don't take anti-depressents, but if you have been on the same one/kind for a while, they too stop working well for us. Maybe a switch in that area?

    Take care of yourself ,Hun. We are here for you and you are not crazy. You are strong-willed and courageous. I have a feeling that you constantly take care of others ... it's time to take care of you.

    Feel better soon,

    Elsa
  5. MamaR

    MamaR New Member

    Dear MamaDove,

    I just read your post and I truly understand where you are at this time. You did not give up! I know, because that is what I feel like most of the time. We just can't do what we want to do, or need to do, because of this illness. We are stuck in these bodies that won't work most of the time, but we must keep hoping for the answer to come soon! You need to hear someone say, "I understand". I hope by telling you where I am today will make you feel like you are not alone. We will all stick together. Thank God for this site! I am actually crying as I write this to you because I feel like.... if I could just speak to you it might help! We must not give up! There has to be help in the near future for us!!! I had to quit working alot like you and Lana. I should have stopped sooner, because now I truly feel like I have pushed too hard for too long. I just thought that I would get better. I haven't been out since last Sunday....too much pain, even though I take my pain meds! And, I have been having breathing problems, which is scarey. I was just telling my husband today that I can't even manage to vacuum one room without falling on the couch with spasms. Today has been horrible! I can't walk but a few steps without sitting. I miss the days of shopping for hours! I know Christmas is coming, and I first became depressed when I realized that I can't go shopping for my family! Well, I hope to go even if I have to get in a wheel chair!
    I know that the answer is to find a understanding doc, but how can they TRULY UNDERSTAND unless they are suffering like we are?!! We must keep searching.
    Please keep us informed how you are feeling!!
    I am praying for you!!

    Mari
  6. Fudge43

    Fudge43 New Member

    .. I'm sure all of us have felt the way you do MamaDove .. your post helped me in fact because sometimes we think we are the only ones feeling that way .. and it is scary ..
    The one thing I try to remember is that there are some things I can control, but the majority of things and situations are out of my control .. and it is very hard to accept that fact. I'm sort of a control freak .. since I had none as a child in s difficult dysfunctional family .. I was determined that I would control my adult life .. no one can be in that much control of their lives and it becomes clearer every day that you live .. I wish I had upfront solutions for you .. all I can say is that letting go of guilt and of trying to keep control all the time is one of the best gifts you can give yourself .. my last bad patch lasted almost 2 months .. even more if I admit it .. but it did lift .. so hang in there .. things do change .. and your feelings change with them ..
    Fudge : ) .. sometimes a drudge .. haha
  7. WoodstocksMusic

    WoodstocksMusic New Member

    You sound exactly like me.

    (see my reply to tigger57 for some details)

    I gradually got worse, quit my job thinking I should concentrate on my house and my 2 boys (13,6 years old at the time I quit work.)

    I still continued my gradual decline in health until one day I realized I was missing all my boys activities and only keeping the laundry washed and dried (not folded and put away) The boys were dressing in the laundry room while searching the baskets for clean clothes.

    After a visit with dr and a dx of FM I began my search (and research)

    I still had a year from that point where I would simply crawl from bed to couch (sometimes...other times I would just stay in bed)

    This board gave me more information then I got from any other single source. These great folks on our board kept my hopes alive that I would eventually pull out and after a long year of giving the vitamins the time to begin to hep me I did see improvement.

    I hope to continue this steady improvement but am certainly happy that I can occasionally volunteer for school activities and even occasionally substitute at school. If this is as good as it gets I am at least thankful I found my way up to this point of functionality again!

    I hope that you too will find things that will help you start to see improvements and give you back some form of life again.

    There are a few good books I found with loads of information as well....look at some of my past posts to find those books if you would like some good reading material outside of this board.

    Good luck and never give up...I truly believe there is help for the worst cases of CFS and FM. I cannot imagine life much worst then my year of bed-ridden time when I cannot even remember being with my family and children. I will never get that year back but at least I have today and tomorrow too!
  8. rileyearl

    rileyearl New Member

    First, I want to tell your that your sons are adorable! I wonder who's in charge at your house? My little Boston Terrier, Lucy, would just love to play chase with your kids.

    About your post, I think you are going through the normal stages of grief each time you realize another piece of your life, one that you always thought would be the same, is changed or cancelled without your knowledge. I've been experiencing the same thing. I never thought of myself as particularly active or an over-achiever, but looking back, I was a whirlwind! Now I figure out whether I can use the energy to take a shower or if I need to pour it into my business. Sometimes the shower waits 2 or 3 days. I would NEVER have gone without a daily shower before this DD. Who would have thought taking a shower would use all my energy for a day?

    I don't think it's fair to call it giving up on your life. You didn't have any choice in it, so it wasn't yours to give up. What I think is more accurate is that you are no longer resisting what your body is screaming at you to do. Once you stop resisting and start focusing on what's going on with your body, you will be able to understand better how to treat these symptoms.

    This really might just be a break from your regular routine, until you get healthier. Or it might be an opportunity to think of other options that never occured to you before.

    Easy for me to say! Not! I still think I can rule my days, just don't come to my house if you can't take squalor.

    You might look at the weekly thread called the To Do List. You will see how people with different pain and energy levels deal with the daily tasks. In the big scheme of things, you need to take care of feeding the dogs, getting groceries and having something clean to wear. If you can do one other task in a day, well that's good! My house has gone to H because I started an internet retail business here. I do not have energy to clean house, too. So, my husband does it or no one does it. His choice!

    Every time I see MamaDove, I think of a character called Mama Love. I just remembered she was in a John Grisham novel. Whew! It was driving me crazy, not being able to remember where she was from. (Crazy is a quick trip for me.) What's wrong with crazy, anyway? It's taken me a long time to get this way!

    Love,

    Francie
  9. lisadot

    lisadot New Member

    (((Mamadove)))
    Are you on an antidepressant? Geez, I can relate to some of what you've gone through, but perhaps you've endured a lot worse than I have in other areas. Our pain is our own. For some worse than others, but we ALL have it. Knowing someone else has it worse doesn't diminish your personal situation.

    It's tough. It's really tough. Chronic pain is soooo incredibly draining. I think it's why so many of us have probably felt the same way you do!

    Can you see a therapist? Because although this group of people is WONDERFUL, but it's not the same as a live human being trained to be there for you. Often they work on a sliding scale. Or even an intern learning and free.

    I've been hysterical this past week over LICE and gallbladder problems. LICE LOL! Yes, the wondeful little things we sometimes take for granted, like being able to walk, talk and sing. I've been crying as I wash sheets and blankets for the umpteenth time. A little nuts, but maybe understandable. I should be happy now, because the wonderful man I married this time hasn't tried to bankrupt me, as the last one did, and doesn't cut on himself or overdose like the last one did, treats me with love and respect unlike the last one, and yet I can still get frustated and overwhelmed.

    Antidepressants aren't a cure, but they can help with coping and some really take away pain. Don't feel guilty. If you do, then I do ;o) And I'm Jewish, so I know guilt, it's in my genes! You haven't lost the battle, you may just be having a temporary set back. God Bless this list of wonderful people :eek:)


    lisadot


  10. MamaDove

    MamaDove New Member

    EVERYONE give yourself a pat on the back (gently, of course)

    I awake to a new attitude on this dreary, rainy, cold Sunday morning...

    I realized something!!! The lightbulb went off!!!

    My health has not improved since I quit work and started thinking of just me (sometimes, anyway) because I recently lost my lil boy Moose...

    I am grieving!!! On top of everything else, I lost my lil boy!!!

    Yesterday, the day in which I finally wrote down my feelings about "giving up", was on the 8th anniversary of the day my Dad went to heaven...I was a Daddy's girl...My father meant the world to me...I learned soooo much from his strength and courage...I took care of him while he was fighting to live with severe RA and I was there when he fought lung cancer...I was also the only one he would allow to make decisions as he neared the end...I made the final decision when his life on earth would end...That's an awful task to put on someone, but he and I wouldn't have it any other way...

    I therefore, have alot of grief to deal with...I have loved deep, therefore, I have lost much...

    I expect too much of myself...To just get over and get on with it...But the heck with that!!! I am human!!! A strong person with alot to deal with...I am still here and haven't given up on myself or those that mean the most to me...I am thankful for ME...And I am soooo thankful for all of you!!!

    I will continue to fight to get better along with everyone here...We can do this together!!!

    My Heart Is Full of Love this Morning (or as we say it in my house, DOVE, MAMADOVE, the best Dove in Da World)
    Okay, I am getting silly now...Will see how this new attitude works out...I think I am on the right track...Thanks to all of you...

    HUGS to All ~ ALICIA
  11. rileyearl

    rileyearl New Member

    I'm so glad you feel better!

    Love,

    Francie
  12. Grandma6

    Grandma6 New Member

    PLEASE READ THIS TO THE END & THANK THE LORD FOR THE CHILDREN.

    I have said "enough is enough" more than once. I have stayed in bed for weeks at a time telling my family to just leave me alone and go on with your life because I felt and still do feel at times that I am holding my husband back from enjoying all the things that we had dreamed about doing when we got married over 31 yrs ago The guilt is proably what gets me down the most. Guilty of having to stop working and not contributing financialy but causing financial problems with all the meds & all, guilt of having my husband have to carry most of the burden, guilt of not being able to do the things we should be doing together. And I feel like I am useless. But then something happened last week that changed my views on this.

    A friend of mine that I haven't seen or talked to in a long time called me one evening & wanted me to know that she noticed how compasionate my grand dgt is, (she's 7 yrs old). This friend works at a rest home & my grand dgt. goes there with her Brownie troop & my friend said that she thinks because of my illness that Valerie is so caring to people who she sees in pain. Out of all the girls in her Troop the employees at the rest home all noticed how caring she was & how loving, & helpful & just reached out to the residents there.

    I guess I needed this to open my eyes and realize that maybe there is a reason for me to be in pain and the Lord is using me to develope in my grand dgt. a human being with such wonderful traits to care for folks in pain. Hopefully she will always be compasionate to those with health problems and God only knows the world needs more like her.

    On Friday Valerie got off the bus here & she told me they had a vistor at school today. Her teachers Mom came by the school and she said that "She was one of Gods special people". I asks her what she meant by this and she said, "Well, Grandma she has one arm that is real real short". I ask her is she had been in an accident and she said, "NO, the Lord just made her special". Then she went on to see if I needed her to do anything around the house because I was in bed having a bad flare-up.

    I was so proud of her because even though this Lady was different, she accepted her without a second thought. (I am going to call her teacher and thank her for this because I needed this "wake up call".) So now, I can say that I do have a purpose on this earth and I so want to be around to see all 5 of my grandchildren, (we have another due in Jan), to grow up & maybe by me having FMS & them seeing my pain will help to instill in their little minds to show compasion for those that are not as healthy as they are. I do love being a Grandma & we could all learn from this. Learn that little eyes are watching us & learning from us so set a good example.

    Maybe this story isn't the right response to your email but I know this has helped me to see things in a different way and I hope it will helps others.

    I'll keep you in my prayers,
    A Very Proud Grandma
  13. Sheila1366

    Sheila1366 New Member

    I think the one thing that keeps us going is the need to feel normal.Atleast that is for me.If I do the housework everyday,groceries,cook etc....I feel better.But I don't work outside the house.I don't know how these gals keep it up but many do.

    I know for my daughter who has fms/cfs, it is pure will and determination to not let this evil disease stop her from living her life.It is very hard to do but she does it.She is my hero.

    Sheila
  14. Adl123

    Adl123 New Member

    Dear Alicia,
    No dear, you are not crazy, nor have you lost the battle, (unless you consider having to work, that battle). And - maybe that one is not lost, either.

    The fact that you've come to the realization that you must take care of yourself now, is a giant step forward. Yet, I understand your plight.

    When I first realized I would have to stop working (I was 57) I had the only panic attack of my life. I am single and depend on myself for my existence. I felt defeated and scared - terrified, in fact. I tried to take it step by step, and not judge or evaluate my progress in relation to when I could return to work. Part of me is still looking for some way to make some money, but part of me is also at peace with living on less.

    Most of all, I am learning not to ask how this happened to me. It doesn't matter, since it cannot be changed, and there is no guilt associated with it. It happened, like floods and tornadoes. Now I need to deal with it, and still find peace and happiness, and a way to provide for myself.

    I asked a spiritual friend of mine about all this, and she came up with the idea that before, my path in life was to teach (I was a teacher, and a good one, too!). Now my path is to experience what I'm experiencing to learn to love myself without judgment, and to try to make peace with my cuircumstances. I'll tell you, that is hard, but I'm trying.

    If you decide to stop working, please don't feel that you have given up, or that you are less of a person. It takes courage to trust , and to take a step that is necessary for one's health, even though it doesn't go along with popular thinking. I'll tell you one thing: I'm still here, after 12 years, and I'm , somehow, making it.

    Other things have become priorities, and my immaculate home is no longer immaculate. This bothers me, but, my friends seem more comfortable! LOL. Cooking is not often possible, so I order in or take something out of the freezer. My activities have been curtailed, and that is hard, but I am learning to love staying home.

    One thing that has helped me, is Oprah's gratitude journal. I constantly forget to write in it, but I try every day to be grateful for the good and the bad, as hard as it is, because both go to make us what we are, and both are opportunities to grow in love.
    Things change. And change is a sign of life.

    So, please, go ahead and do what you need to do for yourself. You are supremely worth it. Remember, we are here for you when the going gets tough, and when there are happy times,too. And I bet, when your insides can relax, there will be many happy times.

    Big hugs,
    Terry

  15. MamaDove

    MamaDove New Member

    YOU WOKE ME UP!!!

    Very Gentle Hugs to you~Alicia