Hello I'm new

Discussion in 'General Health & Wellness' started by fuzzyrainbow, Jun 7, 2012.

  1. fuzzyrainbow

    fuzzyrainbow New Member

    if we accept responsibility for taking care of ourselves. It is possible to lead a meaningful life in spite of chronic illness.

    How hard is this to do?

    Hugs everyone x
  2. TwoCatDoctors

    TwoCatDoctors New Member

    I can't give you a short answer. I am disabled and use an electric scooter and live with two cats. I struggle to maintain my independence even through I find (as most of us do) that I continue to gain more ailments.

    No one is going to come in and take over and take care of me and the cats if I don't do it. Living alone is pushing me to keep going and keep my independence through it all. I HAVE to get up every morning to feed the cats, I HAVE to make sure their food is stocked, and in order to do that, I have to take care of myself.

    My cat Shelby will pester me that it is time for me to go to bed and signal me if someone is at the front door. She is a real blessing and is a true gift from God. Her brother is incredible in recognizing I am in pain and getting to me to help. He is my partner on pain management techniques. He is a real blessing and another true gift from God. They work to help me and it's a reminder that they do their share to help, and they inspire me to want to keep pushing myself and keep going even though it can be hard at times. But I get an incredible sense of satisfaction when I do things.

    In fact, twice a year I take an art class and the cats take turns going to the art class with me (in the scooter basket). I also go to support group meetings and a cat goes with me each time.

    I believe each person defines what makes their life "meaningful," and with disabilities and ailments, I have fine tuned what "meaningful" is to me at this point in life.

    Ten years ago, I used to run and play soccer with a dog I had. that dog passed away long ago and I am disabled and lost the ability to run. Now I love playing toys with the cats and watching them chase each other and play. I love going to the park and watching the ducks in the lake and the Canadian Geese arriving (25 at a time and they keep arriving like planes at an airport).

    Don't give up on yourself. If you need some help for a few hours every two weeks or once a week in order to remain independent, check with your town/city's social workers because they have info on so much. Take care and life is meaningful.

  3. MicheleK

    MicheleK Member

    I fully beleive in and live a quality life though I have a more severe form of M.E and also suffer from FM & POTS.

    So how can I say as I lay in bed with a computer table over my abdomen that I lead a quality life? Quality life is in having a purpose. It involves doing good to others and treating yourself as well as you would treat others.

    I have found a purpose through advocacy, making many friends with the diseases and sharing experiences so I don't think I'm crazy and beat myself up emotionally.

    A heart that can love makes one feel alive. Is this the quality of life I wished for? No! But you work with what you have. Do hobbies you can still do. Keep in touch as your body allows with friends and family. Having a pet also contributes to the quality of life.

    Half of life it attitude, how you face things. We have our days where we just sit down and cry our hearts out. Then we get back up and live our life in whatever circumstances we find ourselves in till the next time we have a day where we are tired of it. Living a quality life with FM, ME/CFS or any other chronic illness is possible. Redefine what a quality life it to you and do what you can with where you are.

    All the best to you!
  4. Mikie

    Mikie Moderator

    Welcome to our boards. I'm glad you found us because we are likely the only ones who understand what you are going through. Even though most of us have struggled with our health, many of us live lives of purpose but usually on a different level than before we got sick. Also, some of us have had changes in our health for the better or worse and have had to adjust. I think it is such a personal thing, quality of life. We must each figure out what that means for us and how to live our lives with purpose and rewards.

    It can take years to find things which help us to physically feel better but I believe it is worth the trial and error to achieve some healing. There is a strong mind/body connection and the more we improve one, the more the other will improve.

    There is a lot of wisdom here and our members are very generous and supportive in helping each other. Our CFIDS/FMS board is a great place to get help and understanding. Good luck to you.

    Love, Mikie
  5. How hard is accepting responsibility for taking care of ourselves? Pretty damn hard if you're too sick to get out of bed.
    Nonetheless, it is possible to lead a meaningful life in spite of chronic illness. My laptop sure helps, since I spend 90% of my life in bed.
  6. TwoCatDoctors

    TwoCatDoctors New Member

    The article below on disabled person Mark O'Brien (now deceased) is an excellent read. Mark contracted polio as a child and was paralyzed. He spent most of his life in an iron lung, yet managed to go to college on an "electric" gurney with a plastic cover over it.

    He used a pointer in his mouth to type on a computer while in the iron lung and wrote incredible poetry, books and was featured in a documentary called "Breathing Lessons," which I saw.

    At one point, Social Security Disability set a hearing to take away his SSD benefits, but they were not successful.

    Mark O'Brien was an incredible person with great determination.