*****I actually started this post in October....just getting around to posting it now****
I have had a sort of shift in my thought process in the past few weeks. You hear about "acceptance" in the stroke world and it always carried such a negative sort of connotation for me. As if accepting any of these deficits means I've surrendered, quit, or given up....and that is NOT what I'm about. I am persistent like crazy so how could it possibly be that I am coming to place of acceptance. Perhaps it's a different kind of acceptance, my own kind...that means I only accept certain parts of this for the moment...for now. I still hope and pray I will get better but I need to be cautious to not allow my not fully recovered state to limit me. Rebecca, from Home After A Stroke blog wrote a short line that has really sat with me and helped me move more towards acceptance than ever before. "Waiting for my real life to begin." That's exactly how I have felt. Once I'm all better I could do x, y, or z. Well guess what....this is my real life...I'm not all better. I'm lucky to be here and be as good as I am. I need to move forward and stop waiting for my real life begin. Coming to that revelation was very emotional. My life is far from the way it was, I'm not sure when or if I will ever get where I want to be. It doesn't mean I'm giving up on getting better ever...it just means that I'm going to continue to live in gratitude where I'm at today. Living with my current deficits means I need to make some changes. I'm going to need to ask for help sometimes...even though I hate asking for or needing help. This fatigue is consuming at times. It's frustrating for me to want to do so much only to find my self NEEDING to sleep a few hours after I woke up. I have spent the better part of 2 years trying to find a solution...to which nothing much has helped. I remain optimistic because I am way better than I was immediately post-op, but I still have a long way to go. So far there has been no great explanation for why my fatigue is so intense. Some of the doctors have called it "post stroke fatigue" PSF and they said I could deal with this forever. I hope they are wrong. There is little research focused on PSF, although it is a very common occurrence after stroke. This is my most limiting deficit today, and yet I am comfortable accepting it and moving forward. If I was left with a leg/hand that didn't work, I would have to use an AFO or brace to help me...I need massive amounts of sleep, breaks, naps. That's just how it is and I am LUCKY! I'm not waiting for my real life to begin anymore and that makes me happy! :)
I have had a sort of shift in my thought process in the past few weeks. You hear about "acceptance" in the stroke world and it always carried such a negative sort of connotation for me. As if accepting any of these deficits means I've surrendered, quit, or given up....and that is NOT what I'm about. I am persistent like crazy so how could it possibly be that I am coming to place of acceptance. Perhaps it's a different kind of acceptance, my own kind...that means I only accept certain parts of this for the moment...for now. I still hope and pray I will get better but I need to be cautious to not allow my not fully recovered state to limit me. Rebecca, from Home After A Stroke blog wrote a short line that has really sat with me and helped me move more towards acceptance than ever before. "Waiting for my real life to begin." That's exactly how I have felt. Once I'm all better I could do x, y, or z. Well guess what....this is my real life...I'm not all better. I'm lucky to be here and be as good as I am. I need to move forward and stop waiting for my real life begin. Coming to that revelation was very emotional. My life is far from the way it was, I'm not sure when or if I will ever get where I want to be. It doesn't mean I'm giving up on getting better ever...it just means that I'm going to continue to live in gratitude where I'm at today. Living with my current deficits means I need to make some changes. I'm going to need to ask for help sometimes...even though I hate asking for or needing help. This fatigue is consuming at times. It's frustrating for me to want to do so much only to find my self NEEDING to sleep a few hours after I woke up. I have spent the better part of 2 years trying to find a solution...to which nothing much has helped. I remain optimistic because I am way better than I was immediately post-op, but I still have a long way to go. So far there has been no great explanation for why my fatigue is so intense. Some of the doctors have called it "post stroke fatigue" PSF and they said I could deal with this forever. I hope they are wrong. There is little research focused on PSF, although it is a very common occurrence after stroke. This is my most limiting deficit today, and yet I am comfortable accepting it and moving forward. If I was left with a leg/hand that didn't work, I would have to use an AFO or brace to help me...I need massive amounts of sleep, breaks, naps. That's just how it is and I am LUCKY! I'm not waiting for my real life to begin anymore and that makes me happy! :)
