I just can't live like this anymore

Discussion in 'Fibromyalgia Main Forum' started by ilovepink4, Sep 5, 2010.

  1. ilovepink4

    ilovepink4 Member

    I have truly hit the bottom. Fibromyalgia have destroyed my life. I am only 43 and i live in my bed. I would have checked out long ago if I didn't have children. Isn't it sad when you are so low that you just hate to wake up.

    i can't tolerate med's very well...i have intolerable side effects. Besides, there is nothing good out there yet.

    The summer is over and the fall pain has hit. I am tired of having no purpose. I have no life. I am just a waste of space, food, and oxygen. I just can't face another long, snowy winter of nothingness.

  2. karynwolfe

    karynwolfe New Member

    This is just a really bad patch, ilovepink. You can't give up now when we're all trying so desperately to cling onto hope, when things are actually starting to become available to us... Hang in there, we're with you.
  3. justdifferent

    justdifferent New Member

    It is so easy to be down on ourselves for not being as "good" a mother as we feel we ought to be - but we are the only mothers our children have got. I know that if I "checked out" that my kids would soul search for the rest of their lives as to whether *they* could have done something different to help. I know I wish my own mother could be there for me emotionally, but due to her own issues, she isn't. Even if I were a lump of clay molded to my bed, so long as I could speak to my kids that would be enough - to listen, to share. My father has a rare terminal disease and it's rotten bad luck that he has it - and my fatigue is my rotten bad luck. My children are my blessing and my joy. I have to stay alive for them because I think leaving them would be far, far worse than giving them what feels like my meagre best. This disease cannot rob us of our ability to love - especially to love our children, and if that is all we can do, then we are still giving.
  4. kat0465

    kat0465 New Member

    ther has been a few posts on the same things your saying. i guess it's that time of year for a lot of us
    Not to mention we get our hopes up with all the talk about the xmrv stuff. i too feel like i live in my bed, only 45,when i go to sleep at night i dread the mornings( it's when im at my worse)

    i too struggle thru for my kids. and nope theres noting good out there to take...... Yet. But it's coming, it looks like the xmrv thing is really credible and it's sad to say but that will Bring out big Pharma by the dozens!!! they will wan't thier share of the billions they will potentially make off of us.

    Hang in there, yes it will probably be one hard winter, but i truly believe that soon, our winter's of ill health and loneliness and despair will be over!!

    were way too close now, don't lose hope.
  5. ilovepink4

    ilovepink4 Member

    Thank you everyone for taking the time to write your encouraging words. I wish that we could all move to a huge apartment building or an island with connected huts.....with people there that can run errands for us, clean our living spaces, cook healthy meals, and we can interact face to face with each other. We could pool our money and our resources and then just be taken care of for the rest of our lives with no money worries anymore.....some that have more to contribute will balance out the ones that don't have as much....

    we can bring our spouses if they want to come...no kids so you have to wait until they are older and out of the house....

    i just can't stand this isolation. I hear others say that they know someone or their relative has FM/CFS but it is never someone i ever see....or know....

    When i am at my most desperate, I come here to talk to you guys. I just struggle with the guilt of laying in bed most days....almost every day in bed unless I take a phentermine....i wish i could take them everyday and never have a crash or never build a tolerance....

    At least school starts in the morning for our boys....the house will be cleaner and that will calm down my anxiety....and i won't be worrying all day about the boys out riding their bikes and getting into trouble...or hit by a car....

    the laundry levels should go down ...they go through so much clothing in the summer....

    and we have a chronic bedwetter...my son is 11 yrs old and has had about 5 dry nights in his life....he pees through an adult depends, floods the bed(mattress pad, sheet, and blankets) and he tosses and turns and churns up the bedding so it all gets wet....i have 2-3 loads of bedding each day just for him....then my daughter has cerebral palsy and that creates extra laundry....

    don't have main floor laundry room....we have pets and hair everywhere....you all are living in teh same situation....it is just too much...

    i just am dreading the cold weather because the pain gets really viscious....i can already feel tension in my jaw...i kind of bite down or put pressure on my jaw joint when i have pain...i am noticing the sore jaw and noticing that i am doing this....

    we really need to move to another part of the country...somewhere warmer and dry....

    again , thank you for taking the time to write to me....i will print this out or bookmark it so i can re read them when i feel like poo.....
  6. greatgran

    greatgran Member

    I have no answers but wanted you to know I feel exactly the same way.. I have thought I am going to just lay in bed till I die or get better.. Well, can't do that. I have so many mixed emotions ..

    The time of year doesn't seem to make any difference seems I am miserable no matter what.

    All I can say is I sure know how you feel as I could have written this myself.. Oh, if I could just get rid of this sinus/ears or weird head thing it might help my anxiety... The darn off balance, seems like I just can't handle simple things let alone the big ones..

    I would like to know what I can do with me... All I know to do is pray and there are times I don't think I am getting through but know I am..

    Also I am so tired of doctors and meds not working. I could go on and on but whats the point..


  7. dzlady

    dzlady New Member

    I havent hit bottom yet, so I am sure that I dont know how bad it can get. However, I get pretty low sometimes.

    Do you have a spouse/partner that supports you? I have a tentative diagnosis of FM but I also have other problems. I will be 40 next Tuesday and I also have ovarian cysts. Last night, the pain from the cysts hit and I couldnt even walk upright. My husband came in the bathroom (it hit after my nightly bath) and I was laying on the floor. I couldnt even stand up to dry off. He dried me off, dressed me, helped me to bed and then he went back out, fixed me a glass of tea, brought me my meds, cigarettes (yes, I smoke) and lighter, my cell phone and blue tooth and came in several times asking if I needed anything. He helped me to the bathroom to use the toilet twice before we actually retired for the night. He covered me up, prepped the bed and pillows for me, put a pillow between my legs for comfort and kept asking me if there was anything he could do for me. He is very supportive. I then began having what I will call breakthru pain in my left leg from the hip all the way down to the top of my foot and into my toes. It hurt to move from the cysts but I had to move to relieve some of the pain in my legs.

    Do you take an antidepressant? My doctor has me on Savella and it seems to work some. When I seen her last, she had me fill out a survey on depression. All the questions were answered from none to every day of the week. Most of my answers were every day of the week (I feel depressed) or several days of the week. The last question was did I feel like ending my life to which I answered no. She said that was the only thing that was keeping her from making a call to the hospital.

    She said I was majorly depressed. There are days that I feel like you...a waste of space, food and oxygen, but I too have children. One is a 17 year old mouthy teenage boy. and the other is a 13 year old boy. My 13 year old is very helpful when I need him. My 17 year old however, is a bag of stress. He's lived here and moved out several times. Some on his own, some because we have told him to get out. I know that sounds bad, but my health, I can't take it. He has been emancipated, has a job and goes to school. He is one of those "entitled children" you hear so much about. He is entitled to everything with no consequences for his actions. He moved back in early July and turned our peaceful house into turmoil for 2 months. Saturday he started cussing and yelling at me, because I wouldnt stop and drop what I was doing right then and there to take him to get his tongue pierced. Every other word out of his mouth was F^&*. After about 4 minutes of me arguing with him, my husband stood up and told him to get out! It was like a 10 ton weight had been lifted. It sounds bad, but I felt good. He moved out. He's always been disrespectful to me and has always treated me like dirt and I dont deserve to be treated that way. I've done nothing to him but try to teach him right from wrong.

    There are days I want to stay in bed all day, but I force myself to get up. It is always late in the afternoon, today it was 1:20 before I crawled outta bed. I do or try to do one thing a day. Like vacuum, dust, laundry, something to show that I have accomplished something. My husband helps with all household chores. He works all day in the heat (he's a roadside assistant and mechanic technician) and then comes home and mows the grass, does dishes or laundry, whatever needs to be done. Maybe I'm not as bad off yet, as you are physically, but I have a lot of support from him. If I dont do anything all day, I feel useless. There are days that I cant do anything, and he knows it and is fine with it. He knows that I am in pain and I cant do things. Matter of fact, he says if I do do something on a day I probably should have just laid around that he would have done it when he got home. And, HE COOKS!

    I've only been off work for a year. I got fired when I took a week off when he had to have a pacemaker put in last October. They said I had missed too much work without notice. OK, yeah, like we knew he was going to have to have this done. I tried to find another job, but there were days that I just couldnt get out. I have been suffering with this pain for about 10 years and about 5 months ago, decided I had had enough and needed to find out why I was in pain all the time.

    Just know that there are people out there who are right beside you with your same problems. Some have varying degrees of pain and depression. Where do you live? Is there a support group out there for you for FM? I am in NW Missouri and would love to have someone to share this with...become friends with. Someone who understands. Maybe there is someone close to you who can help, someone you can vent to, if nothing else.

    And, I love pink too!! :)

  8. ChrissieJean

    ChrissieJean New Member

    I totally know where your coming from. It's the hardest thing in the world to tell your child, " I'm so very sorry "jon" that mommy can't go watch you ride your bike today or play ball with you. Mommy is ill today and can't get out of bed." I did it for the first five years of my son's life and off and on after that. No wonder my son wanted to go live with his dad. IT SUCKS!!!! I lived in my bed for so long that the muscles in my arms and legs started to atrophy (did I spell that right) I was dying in my own bed doing nothing but reading, crying and feeling sorry for myself.
    Well it didn't help when my step daughter's daughter got very ill and ended up in the hospital. of course had to go and support and such. I had to make myself do things. I would all but crawl to the toilet and take forever to walk anywhere. Anyway, the granddaughter came home and had to have on duty nursing care for so many hours a day. Well there was this WONDERFUL woman came into our lives. She not only took extroidinary care of her, played with her twin sister and worked me out of the bed and into a slow but increasing exersize routine. She started with muscle strengthing things in the bed, to walking around the house, out the door, to the mailbox, down to end of street. We did this in like weekly stents. After about a year she had me goign to the gym doing the treadmill and low weight free weights. And we would walk up to three miles. LOL we would walk to stores and shop. She'd say, " a reward for your travels. " Eventually it just worked itself out.
    YES, I still have MAJOR FLARES. Yes I'm still ultimantly depressed alot of times. My son still lives with his father. But you know what, I go out side on my good days and play catch with the neighbor kids. My grandkids are now 3 and in less then a month they will be moving down also. I can't wait. Then I can play with them also.
    OH and did I tell you. I didn't take major pain meds. I started on Effexor and hated the stuff and begged Dr to take me off them. I went to all natural. I started using VEMMA and yes paid out the rear for it. But it did what rx drugs would do. Only problem was just like meds my body got ammuned to it also. So I stopped it and saved the money.
    Anyway, my point is, From half dead and bringing my own family down, I had to make a decision to live or die. Have you seeked out like a pain management facility? If you can't take alot of medications that would be the place I would seek out.
    I had to remember I was placed on this earth for a purpose and laying in the bed willing myself to die wasn't the purpose. so with alot of support and prayers, I battled the PAIN (scale of 50+ not any 10) and I pushed myself to over come. I will pray for you and pray that you will seek your purpose in life and have the desire to over come and be a part of your family's life and before it's too late (like mine) your children will appreciate it.
    I'm only 39. I was down and out like that at 28 and 29.
    keep a daily diary. Track what you eat, drink and what you feel for the day. hell people have stopped reading my blog b/c it's all consumed with my daily bible readings and then my personal stuff. Alot of times you will see my pains and flares. Oh well! That's my life..
    I have no friends to unload it on, so I use a live blog to do it with. For my hands don't tolerate holding a pen/pencil for periods of time. I have to type it. Your welcome to read it and put in your inputs and we can compare notes and what not..
    my blog is richristina.blogspot.com I hope your allowed to do that.
    Start baby steps. just lift your arms in the air (from the bed) and stretch as far as you can. then push out your legs as much and far as you can. Start once a day, then work up til you feel strong enough.
    I don't know. I've written too much. But I hope I helped. And I promise I'm coming in a loving way and i know exactly what your going through. Ive been there. your in my prayers.
    hugs and love Me
  9. ChrissieJean

    ChrissieJean New Member

    I sure love your hubby already. There are far and few men out there that are like that. Mine is "almost" that good. He is supportive and helps me move and fetches me things when I really need or ask for it. As far as cooking, he doesn't do that. If I can't manage to move to cook, he'll find left overs or something in a can. It's better then nothing. He does dishes and picks stuff up. that's enough for me. I'm like you, I do try and find one or two things to do a day to feel accomplished. Out of my five to ten days a month, i may do quite a bit more. But for the 20-25 bad days a month, Im lucky if I cook dinner and make my hubby's lunch. That's my really big way in doing for him. I love making his lunch for work. And no matter how bad I feel, I make sure if i can walk to the bathroom, I do my damndest to walk him to the truck and kiss him goodbye for him to go to work. He understands if i didn't do that, then I'm really having a crappy day and he will come and "lightly" try to hold me and love me before he leaves.
    I 100% agree you need support. You need it in the home, and you need others who share the same things to be able to chat with and compare notes. Where i live there isn't a support group. I was just talking to my husband about it today. I would love to start one. I wouldn't even care if it was an online chat room that met a couple times a week or even once a week. WE need shared expiriences.
    Sorry to hear about your son. That must be very tough on you. My son is only 14 and two years ago (come Nov) he told me that he wanted to go and live with his father. It tore me in two. Even though we had our daily issues. It still a peice of you walking out the door.
    So i'm with you Teresa and anyone else who wishes to have a sharing time. I'm from NW Fla but when it comes to a computer screen, everyone can be in the same room..
  10. slasher

    slasher New Member

    I just posted on another CFS topic how much I hate heat and the intolerance I have for it, that it is has caused multiple hospitalizations.

    You seem to have the opposite problem.

    I actually wish I could move now to a city of perpetually moderate temps, temps never over about 75 degrees. We are all different in some way but with a basic set of underlying problems and causes.

    You have so much to deal with and you should not feel guilty about your condition or your family now.

    Hoping and praying you improve today and each day. Hope and pray you find some solutions, whether alternative or conventional.