One day at a time
My first journal entry...
I am coming to grips with the fact that my daughter's Fibro is here to stay for now. Accepting it as a disability has been a long process for me probably because I watch her struggle with pain and fatigue daily. Her appetite is up and down (mostly down at the moment), she can only eat a few things and very little of those at that. She is, herself struggling to accept the disabling side of things. Only just starting to realise the long term effect this will have on her life. We are waiting anxiously for her service dog to be ready for her as we can both see the benefits it will bring. Knowing the dog is being trained at the moment really helps her cope a bit better emotionally. I am learning to cope a lot better in my role as caregiver. Learning tricks that will help her to be more comfortable, figuring out ways to reduce her pain and stress. We have been finding out which of our 'friends' are actually 'frenemies' and which are the real deal. Making new friends through this group has been a blessing!
All this makes one re-assess one's life. Draw a line and say that this was the past - now THIS is our new reality... make adjustments, re-arrange priorities etc.Several of our frenemies comment on how hard it must be etc. I wish I could make them understand that we do whatever it is our loved ones need. It isn't a sacrifice for me, just a different way of life. The moment people start focusing on how much they 'gave up' that is when they start feeling down and getting resentful towards the one suffering and others whose lives are different. I love my daughter very much - it is no sacrifice. The same as I love my husband and son very much and dealling with our Asperger's is also just a way of life.
I am coming to grips with the fact that my daughter's Fibro is here to stay for now. Accepting it as a disability has been a long process for me probably because I watch her struggle with pain and fatigue daily. Her appetite is up and down (mostly down at the moment), she can only eat a few things and very little of those at that. She is, herself struggling to accept the disabling side of things. Only just starting to realise the long term effect this will have on her life. We are waiting anxiously for her service dog to be ready for her as we can both see the benefits it will bring. Knowing the dog is being trained at the moment really helps her cope a bit better emotionally. I am learning to cope a lot better in my role as caregiver. Learning tricks that will help her to be more comfortable, figuring out ways to reduce her pain and stress. We have been finding out which of our 'friends' are actually 'frenemies' and which are the real deal. Making new friends through this group has been a blessing!
All this makes one re-assess one's life. Draw a line and say that this was the past - now THIS is our new reality... make adjustments, re-arrange priorities etc.Several of our frenemies comment on how hard it must be etc. I wish I could make them understand that we do whatever it is our loved ones need. It isn't a sacrifice for me, just a different way of life. The moment people start focusing on how much they 'gave up' that is when they start feeling down and getting resentful towards the one suffering and others whose lives are different. I love my daughter very much - it is no sacrifice. The same as I love my husband and son very much and dealling with our Asperger's is also just a way of life.
Replies
My pleasure in helping any at all and I also read a book called Pain Erasure by Bonnie Pruden and it is basically teaching acupressure which you can perform yourself or your daughter can. Tell her there is lots of hope because there is..i am not on any meds at all! Hippocrates said Let thy food by thy medicine and I agree. :)