I was dxd with MS in Sept. 2011. I've had serious symptoms and exacerbations since that date with steady decline. Condition: Sometimes bed all day. Cane and sometimes wheelchair. Going upstairs on hands and feet. I can toilet and bath myself at present.
I have been so busy trying to digest and keep up with my own symptoms and doctors that I just realized that is all I talk about and my friends and family can not deal with this disease any more than I can. Although they want to help, at some point, they realized it's more than they can do emotionally and then I'm hurt when they back off. I realize now that I can not talk about my disease to anyone and need to somehow grieve alone. This is all new to me. I've always been a healthy person and so this step of the process is a little overwhelming as is all the other steps.
Can anyone please make suggestions, from a caregiver's viewpoint, how I can make things easier on those I love?
I have been so busy trying to digest and keep up with my own symptoms and doctors that I just realized that is all I talk about and my friends and family can not deal with this disease any more than I can. Although they want to help, at some point, they realized it's more than they can do emotionally and then I'm hurt when they back off. I realize now that I can not talk about my disease to anyone and need to somehow grieve alone. This is all new to me. I've always been a healthy person and so this step of the process is a little overwhelming as is all the other steps.
Can anyone please make suggestions, from a caregiver's viewpoint, how I can make things easier on those I love?
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