Any one in my position

Discussion in 'Fibromyalgia Main Forum' started by lin21, Dec 1, 2008.

  1. lin21

    lin21 New Member

    You lost your job and your income and battle every day with your illness, doing what you can when you can. You lost friends (or people that called themselves that) and you're pretty much housebound.
    And through everything you've been through you've managed to keep your soul, when you feel yourself getting down you fight it. You do everything you can to improve your quality of life and when you do you're condemned for looking good. You're on a limited income and can't do what you used to do financially. Your husband works and pays mostly all the household bills but you pay your share and worry about "tomorrow".
    I'd like to know , what people do after they win their SSDI, what they do after divorce.
    How do we go on and survive? Or are we in financial hell forever? Dealing with our illness is one thing but our changing lifestyle is quite another. Life is certainly not the same.
  2. Shirl_M

    Shirl_M New Member

    My marriage ended, my children don't understand, they keep saying they have "read it all" yet I know they think my deep exhaustion cannot be "all that" bad. But it is. Getting my disability did not help a lot, since My marriage ended, there has been a saying I have learned... "you have to learn a "new" Normal. And you do, however, you will remember the times that you were able to "do it ALL!" and you liked it, so people are either telling you that you can become "lazy" just like *snap* that, or you are a hypochondriac, and the one(s) who know that is not true, are You, and those who have the same thing, or similar illnesses, and you have to be leary of those who say, "OH all you have to do is go on with life, push yourself!" (these are people who exhaust themselves beyond control with Me/Fm, they become irrational, irritable, and think that they have the answer, because someone with a "urban legend" remedy has convinced them of that, and they never left the denial phase, and it is a bit like grief, and the lonliness is soooo deep, it reaches the most core area of your innermost self, and sometimes you cry, and you mourn for who and what you used to be, for me, I have been alone for so long, I had a marriage, three children, and my ex resented me getting ill, he resented me not waiting on him hand and foot, but somewhere you will find "You" and your new normal, and you WILL find things that are interesting to you, other ways to try to stay in shape, yet, I still find myself avoiding meeting anyone, as going places is not easy, and having stomach trouble is not easy, and you cannot go hiking, rafting, and you cannot do the motorcycle thing, but there are still good things in life, you find out who your friends "really" are, you learn that you cannot keep your house perfect and that is ok, many NORMS do, so what the heck, it is not the be all and end all of life. I am currently attending college, for criminal justice, so I can work in a lab, or on a computer, or one of many other things that is "mind" work, because I would love to be able to work part time, and get decent medical, and if it comes to being able to get off disability well, that is a hope, but I will not expect it... many of us need our teeth fixed now, and that too is an embarrassment when it comes to meeting someone new... I am doing this because when you face reality and a new normal, there are other choices, and I turned 50 alone, I do not want to spend the rest of my life alone. I UNDERSTAND how you feel, people who are "really" lazy, are still able to go to parties, and shop and do all the things it takes "US" days to rest up from... yes, I do understand, I also don't want to spend another holiday alone... and yet I am complimented all the time about not looking 50, and many men want to meet me, but I am terrified, I raised 3 daughters alone, WITH these illnesses, so it has been so long I am terrified, I have been where you are and then some, and I was diagnosed when I was 34.... that is a long time to build up a fear... I hope the best for you, because you can still have the best, you just have to learn acceptance, there are agencies that help financially when you are insolvent so do not feel like all is lost, feel hope, that you will adjust and can go from here and have happiness.
  3. bobbycat

    bobbycat New Member

    You create a new life and new world one different from the one you knew. You realize what is important and you realize what isn't. One thing for sure if I was offered a million dollars or my health back I would take my health. You don't want to struggle but I think with most of us the material things are just not that important anymore. We spend so much energy in trying to get well that we have little energy for other things. When we have that one good day we try to make the most of it. Our pride goes out the window as we need help with most things. Most of us have worked most of are lives and in my case my work was my life in many ways. I loved my job and I owned my own business. You try to keep going even though you know you are getting sicker every day and your brain is not working right (cognitive problems.) You don't want to give up and go on SSD as the system is not set up to help you and it scares the death out of you to be put though more trauma as you already feel to sick to even want to go and handle it anyway. It almost sets you up to fail and at the point of applying you already feel like you failed as you don't want to admit your ability to work is not longer there. It is a very misunderstood syndrome and everyone says "but you look good". You do loose freinds, family and what not. Some pretend to understand but can't possibly. Dr's get tired of you as you are chronicaly ill and you end up having other medical problems due to your immune system. Yet you keep going. And what ever is thrown at you you keep going. Once a happy person you are carterized as having major depression yet you know you would not be depressed if you did not feel like a mac truck ran over you and dragged you for a mile. Due to the fact that there is not much known about FMS the Dr.'s when you have other pains tend to try to lump it into FMS only later to find out that there are other major issues happing that has taken numerous dr appointments and another year or two to diagonois. Then you deal with that. You spend your life at the dr's with dr bills stacking up. And more times then one there is another diagonoise of it can be managed but it's not cureable. I hear it all the time manageable but not cureable. Everything I have been diagonoised with is manageable but not cureable. Problem is it is not even manageable. Yet you keep going. People always have hope that one day things can be different. And that is why we are here on this board looking for hope looking for that one thing that might just CURE us. And you never know they cured small pox and other unknown medical mysteries. It is possible and maybe someday we to will be cured so we continue to look for answers and hope. Yes and we keep going because it is the animal instinct to survive.
  4. SweetT

    SweetT New Member

    At this point, I still work. However, working outside of the home sucks up all of my energy. I basically work all week and crash all weekend. I have lost fair-weather friends. Right now, most of the friends that I have left battle illnesses themselves. For those who are "normal", they are mature enough to know that I need rest more than anything, and I cannot have more than 2 "girls night out" days per month.

    "Extras" have to be accounted for in the budget somehow, as I can no longer work overtime.
  5. TeaBisqit

    TeaBisqit Member

    The truth is, there are no real answers. We each go on for whatever reason holds us together.

    I've lost everything, just like you. I am mostly housebound now. And I am a shell of what I used to be.

    I go on now simply because I don't know what else to do. I feel like I live in a glass prison and I'm being held back in this life. I'm not allowed to live my life. I'm not allowed to do anything I want to do.

    I no longer run to doctors. They can't help me and they only seem to make me worse. And I'm sick of their stupid answers. They know nothing.

    All I can tell you is, there are many of us all with similar stories. But there are no answers to any of it. All we can do is hope that one day we will be allowed to know why we got this and why our lives were stolen from us.
  6. pam_d

    pam_d New Member

    ....You go on. I had FM for years, though not as severe as some, then got Leukemia---twice in 2 years---which resulted in a bone marrow transplant this summer. It has just about exhausted our formerly OK finances, every day is scary economically. But you go on, and you believe, and you get awfully grateful for what you DO have. When you evaluate it, it's often more than you realize. At least that's my experience. Good luck, I do hope things get better for you, Lin.