Hi everyone
I appreciate this may be different for each of us - if ok to share - what does a good day look like for you ? and a not so good day ? And how many good days do you have in a week or a month ?
Thanks Janie
I think a good day is a very individual experience. I try to find something good in every day regardless of my pain factor. I live in the Northwest, if it isn't raining, it is a good day. When I watch the birds in their feeder, it is a good day. If I don't have a tube running out of my port for hours at a time, it is a good day. I wish you moments of happiness with every new sunrise. Peace Nancy
Hi.
As per Nancy's reply, for me the difference between a "good day" and "bad day" in effected by my attitude and/or approach and has two components, physically and emotionally and although with CIDP the physical has more questions then answers, I try to remain objective and focus on "the good". At this time of the year, with Christmas looming, celebrating the real reason allows me to focus outside of the secular values. It also brings opportunity to share this with others. Family gatherings etc. are a special gift during this season. I am not trying to belittle the effect that CIDP has, but try (and it can be very trying) to focus on something positive or making an achievement or completing something measurable. For me each day is a new gift and I try and focus on what opportunity the day may bring. Even an encouraging conversation with someone else sitting next to me in the treatment room at hospital (I go to Westmead Hospital, a major hospital in Western Sydney, Australia) can be positive for both of us. If there are things I can't do, and that happens to all of us, I really try and find something else that I can do else I focus on my inability rather than my ability (limited as it may be) and that does not give any benefit to either myself, my spouse or children and grand children. I am becoming more and more convinced that a positive attitude is one way of being able to contribute, no matter how small, to my family, community and maybe even my society. The more I am able to focus on "other things" the less I focus on and am impacted by CIDP. I am not able to "control" the CIDP, and from this forum it is obvious that medical science is not able to either, but I can control my attitude and reaction. Don't sit back and just "let it happen" fight the good fight and experience maximum quality of life within the obvious limitations that CIDP brings. Blessings to the support group and best wishes for 2013, may be the year of a miracle cure.
I agree good attitude is everything ( challenging some times to hold in relapses ) - may I ask how long have you had CIDP - & do you have any thoughts around ' the brain that changes itself ' neuro plasticity - nice to know you are in Australia, we are just outside Melbourne.
Bill said:
Hi.
As per Nancy's reply, for me the difference between a "good day" and "bad day" in effected by my attitude and/or approach and has two components, physically and emotionally and although with CIDP the physical has more questions then answers, I try to remain objective and focus on "the good". At this time of the year, with Christmas looming, celebrating the real reason allows me to focus outside of the secular values. It also brings opportunity to share this with others. Family gatherings etc. are a special gift during this season. I am not trying to belittle the effect that CIDP has, but try (and it can be very trying) to focus on something positive or making an achievement or completing something measurable. For me each day is a new gift and I try and focus on what opportunity the day may bring. Even an encouraging conversation with someone else sitting next to me in the treatment room at hospital (I go to Westmead Hospital, a major hospital in Western Sydney, Australia) can be positive for both of us. If there are things I can't do, and that happens to all of us, I really try and find something else that I can do else I focus on my inability rather than my ability (limited as it may be) and that does not give any benefit to either myself, my spouse or children and grand children. I am becoming more and more convinced that a positive attitude is one way of being able to contribute, no matter how small, to my family, community and maybe even my society. The more I am able to focus on "other things" the less I focus on and am impacted by CIDP. I am not able to "control" the CIDP, and from this forum it is obvious that medical science is not able to either, but I can control my attitude and reaction. Don't sit back and just "let it happen" fight the good fight and experience maximum quality of life within the obvious limitations that CIDP brings. Blessings to the support group and best wishes for 2013, may be the year of a miracle cure.
A Good Day for me is a day that is centered around things that I can still do, cook, teach, enjoy the outdoors. Now that I cannot do the physically demanding things that I once could handle it does not mean I cannot sit in a chair and instruct others and pass along my knowledge. I take great pride in teaching people how to design and build structures (decks, sheds, etc...) saving them money and building their self-confidence.Spending time with family or friends and not being all doped up on pain meds. I love to drive! I have a muscle car and I love taking it to car shows in the summers, cruising around with the windows down and nobody knows I have a disease.
A bad day is when it hurts so much I have to take pain pills when I wake up, just to function. Then I get stuck sitting in front of a TV all day, operating a remote, too tired to get up and make myself something to eat. The fatigue sucking the life out of me, knowing it and feeling helpless. Trying to work out with my weights and not being able to hold onto them and they fall to the floor. Wondering what tomorrow will bring. I hate the pain meds.
Hi Janie and Bill - I am in Oz too - in Melbourne.
I would say a bad day is when I've done too much and am tired. A good day is after a massage and a swim, and am feeling physically good - no aches and pains.
Hey I like your positive attitude Bill - appreciating the little things - hard to do at times I know.
Janie do you go somewhere in Melbourne to do meditation and where do you get your treatment ?
Janie said:
I agree good attitude is everything ( challenging some times to hold in relapses ) - may I ask how long have you had CIDP - & do you have any thoughts around ' the brain that changes itself ' neuro plasticity - nice to know you are in Australia, we are just outside Melbourne.
Bill said:Hi.
As per Nancy's reply, for me the difference between a "good day" and "bad day" in effected by my attitude and/or approach and has two components, physically and emotionally and although with CIDP the physical has more questions then answers, I try to remain objective and focus on "the good". At this time of the year, with Christmas looming, celebrating the real reason allows me to focus outside of the secular values. It also brings opportunity to share this with others. Family gatherings etc. are a special gift during this season. I am not trying to belittle the effect that CIDP has, but try (and it can be very trying) to focus on something positive or making an achievement or completing something measurable. For me each day is a new gift and I try and focus on what opportunity the day may bring. Even an encouraging conversation with someone else sitting next to me in the treatment room at hospital (I go to Westmead Hospital, a major hospital in Western Sydney, Australia) can be positive for both of us. If there are things I can't do, and that happens to all of us, I really try and find something else that I can do else I focus on my inability rather than my ability (limited as it may be) and that does not give any benefit to either myself, my spouse or children and grand children. I am becoming more and more convinced that a positive attitude is one way of being able to contribute, no matter how small, to my family, community and maybe even my society. The more I am able to focus on "other things" the less I focus on and am impacted by CIDP. I am not able to "control" the CIDP, and from this forum it is obvious that medical science is not able to either, but I can control my attitude and reaction. Don't sit back and just "let it happen" fight the good fight and experience maximum quality of life within the obvious limitations that CIDP brings. Blessings to the support group and best wishes for 2013, may be the year of a miracle cure.
What starts as a good day can easily end up as a bad one if I try to do too much like walk too far or too long. The one thing I learned years ago is some times you just have to say: "Oh, well." That is by no means giving up, but realizing your limitations at the time, and maintaining a positive attitude can go far. Gary
A good day is one when I open my eyes and still cast a shadow. I can have agreat day but boy do I hurt and I can have lousey one without any pain. I try very hard to treat my CIDP as, unfortunately part of me without any judgement that the pain is bad or weakness is getting to me it is just there and is part of who I am now. I get so worked up when it is suggested that I cannot do something they may be right but I must make that choice not anyone else.
Apart from all that today is a good day don't know why but I don't spurn it.