Frozen Time

Discussion in 'Fibromyalgia Main Forum' started by TeaBisqit, Jan 27, 2013.

  1. TeaBisqit

    TeaBisqit Member

    For those who have had this disease for many years, do you ever feel a part of you is stuck in that year you got sick, since that's when your life stopped? I have so many things I should throw out because they are literally from the year I got sick and I certainly don't need them or use them, but I'm having a hard time parting with them. I even have a book with that year in the title. I have clothes from that year that certainly no longer fit, too. Just so many things from when my life literally stopped.

    I think I'm afraid to throw them out because part of it is fully admitting that my old life is dead and will never return. And all these years have passed and I'm still sick and disabled.

    And then there's that sentimentality. Remembering when I wore something when I was healthy. The places I used to go and the things I used to do that I can no longer do.

    Maybe I should have titled this post Dead Dreams. I have old college papers I should also throw out. It's painful for me to even see them. I'm no longer well enough to ever attend another school. And I never got to have my career because of this disease. That's all over and long dead.

    Throwing it all out for me is admitting it's over. My old life will never return to me. And that's incredibly sad.
  2. As someone who suffers with ME/CFS and FM, I can so relate to your feelings... And it breaks my heart...

    I've had FM since 1995 and ME since 2004... But my life didn't come to a halt till the ME/CFS hit. And early on, if I came across anything that reminded me of how active I used to be, it would bring me to tears. The losses we incur from this disease are profound... more so for some than others because there are different levels of severity with this disease... So it's only natural that we would grieve the loss (though not necessarily permanent) of our active lifestyle and dreams. A perfect analogy to how ME/CFS makes us feel is "being in prison"... Except in our case, we didn't do anything wrong and the prison is our bodies. I also think that the younger one is with this disease, the harder it can be to come to terms with.

    While I feel it is important to come to a healthy level of acceptance (which took me years), I still feel it is important to hold onto hope of getting better. I will never give up that hope, and continue to look for ways to improve. For some, a counselor can help to get you through the grieving process of what this disease has taken from you... For others, a strong faith helps them to come to terms with such a difficult situation. But without either of these, we can stay stuck in a state of grief and emotional turmoil... Which can then make our condition much worse.

    I have often said that this disease (ME/CFS) is very cruel... especially if you are at the severe end of the disability scale. But at the same time, there are spiritual blessings that can come from our suffering, if we allow it. And we must keep believing that we can get better and look for ways to improve... little by little... not giving up hope of improvement... And dare I say it? Even complete healing...

    Teabisqit, I have felt the very same way you are feeling at times, so my heart goes out to you. Do you have any family support or anyone who could help you deal with the feelings you're having? Do you have a faith (spiritual beliefs) that could help encourage and strengthen you?

    Just know that others on this board care.... and understand... all too well. I will keep you in my prayers... Let us know how you are doing...


  3. gb66

    gb66 Well-Known Member

    I have had CFS/FM for over 30 years. And, yes I do think about all I've lost. I was 38 and looking forward to going back and finsihing college, going to work, since all my kids had grown up.

    I did finish a 2 year associate degree and did work for a couple of years but finally had to quit due to the CFS/FM. I finished college after getting sick and just couldn't work, even part time. I don't feel like it was a waste though because I really enjoyed the experience.

    Since becoming ill I've had to give up all my dreams for retirement years. My husband and I wanted to move back to FL and be near the beach. That's where we met and did a lot of our dating. We're now 72 years old so it's not too likely that we'll get to return.

    I'm sorry you're feeling so blue. Those moods come and go for me. I too have not given up hope of being well one day. I know it still could happen. Right now I'd settle for a little validation from the medical community. I still don't have a doctor that acknowledges CFS. They did diagnose FM and arthritis years ago.

    Wish I had some insights for us. It truly is living one moment at a time. I don't think I have anything left to throw away from those years. It's too long ago. Seems almost like I dreamed my former life. (Or maybe this ones the nightmare!)
  4. TeaBisqit

    TeaBisqit Member

    There is only one reason I believe our condition can be reversed and that is from when I took Ortho Tri Cyclen Lo birth control pills around 2001 or so. The first two months I was on the pills, ALL of my fibro pain disappeared. And I mean ALL of it. You know the feeling like someone beat you up. And all the tender points in your shoulders and the burning pain and all that, went AWAY during those first few months on the birth control pills. Then, I experienced a very brief bit of time when I was in the grocery store and it was like a veil was lifted and I suddenly felt almost normal energy. There was this incredible feeling of what it used to feel like to be healthy. But it was so brief. It was just long enough for me to look at everyone in the store who takes their energy for granted and I hated them all for it. Totally irrational hatred, but maybe not. They do take their physical energy and health for granted. Well, the feeling didn't last. Especially because shortly after that, I was in a car accident that destroyed any progress the pills had given me. So there has never been a way to tell if they would have continued to improve me.

    All the women over the years with our illness who have claimed to have a remission during pregnancy, they are telling the truth. But it's also true that the second they give birth, our illness returns.

    I believe some form of hormonal therapy could reverse our condition. But no one is bothering to research it, no matter how many times I have begged researchers to do so and told them what happened to me with the pills. They ignore me. They would rather study stupid things like if we had stressful childhoods, or try to force us to exercise while sick, knowing it can make us worse.

    Anyway, my post was about that I need to clean up and throw out and I'm having a really hard time doing so because most of the stuff is from the year I got sick. It's hard to part with. Because once I do, it really is gone.
  5. sunflowergirl

    sunflowergirl Well-Known Member

    I've felt for years that after the change at age 40 I went downhill. I read a few of Suzanne Somers books and in several she talks about FM and hormones.

    In Dec. I started biodentical hormones (I'm age 68 now) after she had run a ton of lab tests which showed I had absolutely NO hormones left. It's too early to tell for sure but the entire month of dec. I was without that achiness and felt pretty good UNTIL I was hit by the flu. I'm just getting over it after 5 l/2 weeks.

    I'm on the hormones because I started seeing an integrative doctor which I found by going to an integrative doctor website and putting in my zipcode and my medical problem. This doctor specialized in treating FM, and aging problems.

    Maybe you need to look for another doctor?

    And about the "cleaning needed", we ALL go thru periods of change, whether we're sick or not. Start small.....if you haven't worn it for a year you're not going to, so give it to someplace where they will have a use. Don't go into the mental side of thinking about what's been lost. Look at this as a time of growth and change, not of loss. Decide in your mind that you WILL make changes for the good, starting with your closet.[This Message was Edited on 01/28/2013]
  6. MicheleK

    MicheleK Member

    I think in the beginning it is perfectly normal to hang onto things. We don't yet know enough about the illness or how it will proceed in our own personal case to be able to know if we will be using the things again or not.

    If it has been many years though and you find yourself hanging on to all of those things, then it's a problem and you are right to examine why you are hanging on to them.

    You could pick a few choice things that mean the most to you and donate the rest of the usable things. It would be emotionally healthy to do so.

    We can never move forward while hanging onto the past for dear life. That said, we all understand they symbolism, emotional ties, hopes, dreams, and other reasons for tending to hang onto things from our days before our lives were struck by this cyclone of chronic illness.

    I live in hope and if and when I get better I intend to fill my life with new things and you can bet it will be much easier to get rid of the things I've spent passing the past 20 years of illness with.

    I wonder if you are a person who naturally hangs onto things and if this is not just about the year you got ill. I am and always have been a natural purger. So I find it easy to get rid of things. It feels good to me actually. I do cherish the photo albums of my pre illness life and enjoy looking through them to remind myself I was not always like this and hopefully won't always be either.