What did you do if you ever felt THERE IS NO WAY OUT???

Discussion in 'Fibromyalgia Main Forum' started by 1sweetie, Jul 17, 2006.

  1. 1sweetie

    1sweetie New Member

    If you have ever felt trapped, with no known solutions, having tried everything that you know to do with little support, what did you do???

    I have always been a fighter and still am trying and God knows I've asked for help but it doesn't come or not enough. No one knows how to help. Everyone is too busy. My husband is the only one but his behavior has always been to ignore and hide from problems and he has his own health issues.

    I have never needed much help before. I always took care of me or found a way to do it and everyone else. I think that is the problem. They just will or can not except that my life has changed and they don't want to change their lives. This hurts me a lot.

    I know what I am supposed to do. I know about pacing and energy envelopes and I believe in that but how do you make it happen. Where do you find a support team? I live in a rural area and help is not readily available.

    I just don't know what else to do. I know that many people have had to face this problem or are still dealing with it. I'm out of ideas.

    What works or worked for you? I am afraid to let things continue in the way that they are progressing or should I say declining.

  2. cymbeline

    cymbeline New Member

    I do pacing although i find it hard to be strict enough with myself sometimes. Although it is a simple concept i think it is quite hard to implement and you have to really want it and be prepared to give it a go for quite a while before improvements become obvious.
    I don;t know if you are in the US or the UK so can't help about support teams. Action for ME have a really good booklet if you want to find out more.
    It is hard when other people can't make allowances either because they cann't see the difficulties or they won't see them. I am good at hiding mine and people only see me when i am good or push myself to look ok- when i thought about this it seemed less surprising that people didn't change or do things differently because i wasn't letting them see the extent of the problem. I don't know if this is the same for you but thinking about this really helped me make a shift in how i thought about their behaviour and changed how i was about my illness with some people which made a big difference.
  3. NyroFan

    NyroFan New Member

    1sweetie:

    I just knew what I had to do and went ahead with my plans.
    I am really big at designing a plan and executing in knocking every barrier down.

    It is also how I get through these DDs.

    nyrofan
  4. TAM

    TAM New Member

    HI,

    Try to have a heart to heart with your loved ones, i know you probably already have but scream it out (in a nice way) if thats what you have to do let them know you need there support because of all your pain.

    Also try to do things just for you, when you need to take it easy you do that . Do something that you enjoy read a book watch a movie just start caring for yourself first.
    Listen you have taken care of everyone it sounds like and taken care of yourself, well its time they start helping you the way you have helped them.

    My heart goes out to you i feel so sorry for you, i wish i lived near you and i could help you and be there to support you but i can only write you on this post but please know i'm here for you if you need me. Just vent away on this post when you need to , there are alot of helpful nice people who are dealing with the same troubles and they will be here to support you.

    My heart goes out to everyone who is in daily chronic pain but my heart breaks and really goes out to the ones like yourself who suffer daily pain and have no support, that tears me up. I'm in horrible daily pain i keep getting worse i don't know why i keep feeling worse, but i'm blessed and i have lots of support and understanding. I can't imagine not having support because that just gives you more stress and stress = more pain. Take care, I hope things get better for you your in my thoughts always. TAMMY.
  5. sisland

    sisland New Member

    I hear you! The only way i've found is to be your own advocate! I've learned not to complain and to be as self sufficient as possible!..............................................It's hard but i realize that all of my family members have their own lives to lead (job's school, etc...) and they do make time for me when they can!!...................................That's why we are here for eachother!!..........................................Hugs to you Sweetie!.....................................Keep the Faith!......................sisland
  6. janieb

    janieb New Member

    I'm afraid this will sound like whinning, but here goes.

    Have had fibro for about 15 years and it just keeps getting worse, although I can pretty much control the pain with meds, and I have a very high threshold of pain.

    Sometimes this good and then again, it's not. Two weeks ago I was hospitalized with pancreatitis. My enzyme counts were so high they insisted I stay and that I needed a morphine pump immediately. I really did not feel that much pain.

    Lots of friends and relatives called or came up to see me. So much, that I felt guilty. After five days of no food or water,and every test they could do in our hospital, they decided to let me come home.

    We walked into the house, my husband had two workers here (they had slicked up the house) and he looked at me like "what's for supper." For the first time ever, I told them they would have to cook for themselves because I was going to bed; and I did.

    Part of this is my fault for taking care of everyone except myself. No one realizes I need taking care of and if they did, I think I would discourage them. It's not in my nature.

    My other problem is that my husband is so self-centered that even when he knows the next round of tests will be at the Mayo Clinic, he just expects me to do for him.

    At this time, I feel like I can take care of myself, but that's about all I can do. I'm actually wondering if we should separate so we can each take care of ourselves.

    janieb
  7. kjfms

    kjfms Member

    I am sorry you are having such a rough time and I do hope it will get better for you soon.

    I really can't offer any advice just a little show of support :)

    Best wishes,

    Karen :)
  8. ABCDfamily

    ABCDfamily New Member

    Hey 1Sweetie,

    If you want to talk you can email me at (email address removed per site rules) Maybe you need someone to talk to rather than just post. I can relate and I do not want to preach to you. It sounds like you need a sounding board. I too am dealing with all of this stuff and it is scary and you seem like you are asking for help. I'm listening and I'm here.
  9. 1sweetie

    1sweetie New Member

    I truly appreciate all that replied. All support is very much appreciated.

    It's hard to watch what you thought was a fairly stable long term marriage(where I was treated like a queen), a son that once adored you and use to say he wanted to marry me (when he got big and I got little) and to whom at age 24 is still living in my garage apartment for $50.00 a month, a daughter that was one of your best friends, and parents that until a couple of years ago I felt would have given their life for me, a 32 year career that I loved, and lots of people (customers) that thought I was smart and depended on me for life altering decisions, and long term work relationships that I thought were friends all desert you in one way or another.

    I feel like a little tiny canoe all alone in a great big ocean. I only felt safe here until recently when I got involved in a strange & combative post. I've haven't posted here in a couple of weeks and did not know if I felt safe to post here again.

    I have severe cogntive problems that go along with the fatigue. Because the cognitive problems are so severe, it limits what I can do. Driving is one of the big problems. My brain test show executive order dysfunction. The sensory overload and multiple chemical sensitivities limit me a great deal also. Sometimes I feel like the boy in the bubble.

    The cognitive problem limits everything. I had always used my brain and social skills to better myself. Somehow I have lost both.

    The reason for this post is that I know mentally I am in a very unstable spot. I have turned to all the people that I know and the responses have been hurtful and told them that I need professional help. I am talking serious emotional feelings now and for several reasons not listed here.

    My husband will try but our relationship is on eggshells. My daughter will be available in 2 months when lake time is over. My son is to busy because he is stressed. My parents are clueless and if you can believe it they don't want to take me out because they are afraid it is to hot for my dogs to be in the heat. I had an appointment to get a hair cut today and my husband wanted me to cancel it because he did not want the dogs in the heat. I honestly feel second to the dogs now. I am thinking it is not me that has brain problems.

    If any of you have read my profile, you will know that I have had problems in the past and certainly did not list some of the personal ones but I never felt like this. I researched and fought and activitely raised money for breast cancer. I have led food drives and fund raisers for people in need. I guess my feelings are hurt. I saw someone yesterday that I had not seen in over 2 years and she compared my illness to a friend's daughter that is anorexic. Is she telling me it's mental?

    Hayleycole: Thanks for your input. I will go to the website. Can you still read? I can not concentrate to read a book. I was an avid reader. I wish I could get this back. It would feel my time. I have to print your replies so that I can remember or I would not be able to anwser you. I also think that you are right...they can't handle it. In my present situation, they need to make an exception.

    I will reply to the other's later. I had an unexpected, long phone call with my daugher which I was happy to talk with. I really did go into detail about the current situation.

    I have an appointment tomorrow. My husband had to take the day off work to take me but hopefully it will help. This person is suppose to work with people with chronic illness. I hope it helps.



  10. sfrazier

    sfrazier New Member

    I battle this question every day. I told my mom the other day that I have no quality of life just an exsistance. The only thing that keeps me going are my kids. Without them I don't know what I would do. Even with them, sometimes I even yell at them cause they think this is funny when I forget things and it just makes me so mad. I would never have thought I could be this bad. My mother is 75 and she can do more then me and remember more then me. It is just so frustrating. I'm sorry you feel like that but remember you are only one person. God is out there but also remember that verse that god only helps those who help themselves. I don't know if that applies to you but on some days I know it sure does to me. Helpless, Frustrated, and just down right angry at life is just something I go through everyday and some days are better then others. The other bible virse is god doesn't give you anything you can't handle. He just doesn't say how you are suppose to handle it so if screaming in your back yard at 2 in the morning is handling it. Your luck cause you are in a rural area. If I did something like that they would have me locked up in a heartbeat and put me in a padded cell. lol.....SueF
  11. ABCDfamily

    ABCDfamily New Member

    Hi 1sweetie.

    I kind of guessed you had asked for help. I read between the lines what you did not write in your first post. I do know the place that you are in and I know it seems dark. The unfortunate truth of the matter is most people do not want to hear how terrible this is to go through. Most people do not care nor do they believe us. It may sound terrible but that is what I am finding out. I consider myself to be a very caring person who has always watched out for people. You sound similar to me in many ways......including your career so I can relate. I'm finding out that I will not talk about this or share it with anyone else. The sharing process in itself is pure torture.

    I just found out this evening that you can't list your email here so that's how new I am to this site. I am here if you need someone. I will keep checking in. I couldn't care less when I signed up or what the rules were..........I felt/feel like crap. I'm doing this more for my own therapy and I am catching on quick. Who cares who says what here. This is a place to dump and maybe help a couple of people along the way. If I were you I'd use it as just that too. It's obvious that these people do not have any kind of relationship outside of here because "they" don't allow it. Can anyone tell me why that is? It's bad enough out there in the "normal world" why limit people to this and only this? OK, who's the book writer or movie producer here? Believe me guys this is watched and people are paying attention. Do you think for one minute anyone is going to let on?

    Good luck my dear 1sweetie and if you ever need someone...... you'd be amazed just at how good I am at finding people :) No one should be alone and I'm sad that you feel so alone.

    All My Best to you :)
  12. Crickie

    Crickie New Member

    Dear Sweetie,

    I think your post has deeply touched all of us who have this awful illness. For the fist time in quite a while I cried. While I feel for you and the struggle you are having, I also cried because it's amazing how similar we all are and that "we" do really understand each other! I am pretty new to this site even though I have had fibro for 7 years...I never knew of any support and so this is the first. The more I read, the less isolated and more welcomed I feel! It's unfortunate that we all don't live close together and could reach out for a real hug...will you settle for a cyber hug?
    Among all of this good advice that you received...the one thing that has worked for me at times is writing. Keep a journal...write a nasty venting letter and then tear it up or watch it burn....or simply writing a list of things that I am thankful for has helped. Of course, a lot of the time, to me, these ideas just seem like bullshit. But then other times it can do wonders...that's fibro! Whatever works!
    Hang in there and please take care of yourself...you deserve it!
    Chrisi