I can't believe it!! Yesterday marked 6 months since the day I had surgery and a stroke. December 10th 2010 was a rough day...in every way...the anxiety leading up to surgery was unreal..and when I "awoke" from the anesthesia I would hardly call that state of mind awake. I was in a bad place, a really bad place. I was sort of able to talk in a very slurred drooling sort of way. I was in a ton of pain from my jaw muscle being cut and my neck being held in an awkward position during surgery for hours. I didn't open my eyes very often because every time I opened them, I puked. I couldn't move the left side of my body...and I was pretty scared about that. At the same time, I was immensely grateful that I was alive, I still knew who I was, who my family was, and all of what just happened to me. If I would have lost Jack in my mind...I would have lost my single greatest motivation for recovery. Crazy how he helped to save my life!! What an amazing little spirit he has! 6 months later, I can say I have worked super hard and I am much better. There are some things that are not just as they were, but I'm not giving up yet...I have a long life to live. I have some days that are better than others, but even the days that I'm not feeling well it's mostly fatigue I'm dealing with. My endurance is still pretty terrible. I'm always trying to push myself to increase my endurance, but I actually think I probably push too hard and then regret it later. I don't seem to be able to gauge my endurance either...I just reach the point of being done....and it's too late. Once I reach the too tired spot everything starts to fall apart: my thinking, speech, posture, facial expression, body movement, vision....everything! Point being, I need a lot of sleep and rest. I hope this continues to improve with time because it's not exactly functional to require 10 hrs. of sleep and 2-3 hour naps. As John says, I'm sleeping half my life. At least I get to live the other half! :)
Most researchers and experts on brain injury indicate that the first 6 months after a brain injury is the "golden" recovery period. Not to say that at 6 months, you're done; but the greatest amount of recovery typically occurs in the first 6 months. From what I have read, most "spontaneous"/effortless recovery is usually over by 6 months. The first outpatient rehab I attended seemed somewhat lackadaisical about the significance of early and vigorous intervention. They actually told me at times that I needed to "lower my personal expectations". I totally disagreed and that's mostly why I left. Since switching to an out patient rehab closer to our house, I have continued to progress consistently. I'm not sure if switching rehabs has helped to prevent me from reaching a plateau...or I have just been lucky...but I have noticed continued improvement throughout the entire first 6 months...and I hope it continues.
I have had an amazing recovery and I credit a great deal of that to the team that was/is behind me. John, in particular, has been completely amazing!!! If not for him and Jack...I wouldn't want to see the outcome. From my first diagnosis, working through the decision to have surgery, preparing for surgery (deciding to have and preparing for surgery were the hardest steps for me), and actively engaging in my recovery and therapy....John has been here for me...supporting me, cheering me on, and I am forever grateful. When we were driving to Phoenix for surgery we had a talk about recovery (thinking and hoping I would have a routine 6 week deal)...and we agreed that whatever it takes we're committed to getting me better. I would have never imagined my recovery would last this long or cost this much, but John made a commitment to me and he's honoring his word. He's that kind of guy and I love him more than ever. We're in this together and that makes this really hard thing so much easier. There have been a ton of other people that have walked through this with us, especially: my mom, my Auntie, Rebecca, Tom, everyone from Angioma Alliance,and my amazing team of health care professionals. We truly appreciate all the love and kindness that has come our way. Thank you is never enough but THANK YOU anyway!!! :)
As far as my original goal of 100% recovery, I think I have changed my mind a bit about that. I don't know how I would be able to measure that anyway or if it's really all that important to me. Don't get me wrong...I'm not giving up on getting better it's just that my perspective has changed some. I don't think anyone is ever really as they were...it's a natural process...we're all always changing. If you're older than say 28 you're probably not as quick thinking or as fast as you were at 28...but you have something else to replace that speed with...WISDOM and LIFE EXPERIENCE. As I have been reflecting, I decided I may not think quite as fast as I did before, but what I have gained from this whole experience is so much more than that. I almost think that if I totaled up the pluses and minuses...I might even be ahead of the game at this point. My endurance, mental fatigue, and attention continue to be huge deficits which I DO hope to continue to improve upon. I do not want to feel limited by my deficits and right now I still feel limited somewhat...so the recovery and the hard work continues for as long as it takes. I have often thought about my dear 90 year old Grandma during my recovery. She has such a special way about her. I'm sure she is not pleased about her physical decline due to normal aging. Her ears don't hear well, her body aches, she doesn't walk as well as she once did, but boy is she wise!! She isn't quite what she used to be either, but she's really so much more. This is all part of life...it's the way it goes...it just happened to me faster!!! Maybe in some twisted sort of way it's a gift?!
Most researchers and experts on brain injury indicate that the first 6 months after a brain injury is the "golden" recovery period. Not to say that at 6 months, you're done; but the greatest amount of recovery typically occurs in the first 6 months. From what I have read, most "spontaneous"/effortless recovery is usually over by 6 months. The first outpatient rehab I attended seemed somewhat lackadaisical about the significance of early and vigorous intervention. They actually told me at times that I needed to "lower my personal expectations". I totally disagreed and that's mostly why I left. Since switching to an out patient rehab closer to our house, I have continued to progress consistently. I'm not sure if switching rehabs has helped to prevent me from reaching a plateau...or I have just been lucky...but I have noticed continued improvement throughout the entire first 6 months...and I hope it continues.
I have had an amazing recovery and I credit a great deal of that to the team that was/is behind me. John, in particular, has been completely amazing!!! If not for him and Jack...I wouldn't want to see the outcome. From my first diagnosis, working through the decision to have surgery, preparing for surgery (deciding to have and preparing for surgery were the hardest steps for me), and actively engaging in my recovery and therapy....John has been here for me...supporting me, cheering me on, and I am forever grateful. When we were driving to Phoenix for surgery we had a talk about recovery (thinking and hoping I would have a routine 6 week deal)...and we agreed that whatever it takes we're committed to getting me better. I would have never imagined my recovery would last this long or cost this much, but John made a commitment to me and he's honoring his word. He's that kind of guy and I love him more than ever. We're in this together and that makes this really hard thing so much easier. There have been a ton of other people that have walked through this with us, especially: my mom, my Auntie, Rebecca, Tom, everyone from Angioma Alliance,and my amazing team of health care professionals. We truly appreciate all the love and kindness that has come our way. Thank you is never enough but THANK YOU anyway!!! :)
As far as my original goal of 100% recovery, I think I have changed my mind a bit about that. I don't know how I would be able to measure that anyway or if it's really all that important to me. Don't get me wrong...I'm not giving up on getting better it's just that my perspective has changed some. I don't think anyone is ever really as they were...it's a natural process...we're all always changing. If you're older than say 28 you're probably not as quick thinking or as fast as you were at 28...but you have something else to replace that speed with...WISDOM and LIFE EXPERIENCE. As I have been reflecting, I decided I may not think quite as fast as I did before, but what I have gained from this whole experience is so much more than that. I almost think that if I totaled up the pluses and minuses...I might even be ahead of the game at this point. My endurance, mental fatigue, and attention continue to be huge deficits which I DO hope to continue to improve upon. I do not want to feel limited by my deficits and right now I still feel limited somewhat...so the recovery and the hard work continues for as long as it takes. I have often thought about my dear 90 year old Grandma during my recovery. She has such a special way about her. I'm sure she is not pleased about her physical decline due to normal aging. Her ears don't hear well, her body aches, she doesn't walk as well as she once did, but boy is she wise!! She isn't quite what she used to be either, but she's really so much more. This is all part of life...it's the way it goes...it just happened to me faster!!! Maybe in some twisted sort of way it's a gift?!
Elizabeth, 6 months is really not long at all into the stroke rehab and you will still make huge recovery. I promise. :)
ReplyDeleteOne of the ladies at My Stroke Recovery office would grin and say to you ... aww you are such a new baby, because you are only 6 months. Six months into a fresh start at life.
Do try to plan and pace your day to keep from getting exhausted. (I know that is super hard to do with the little guy around) Think about mental work as exhausting too as well as physical movements and try for balance in your activities.
Don't push yourself beyond your need to rest. It took me a long time to figure out that it is better to stop and rest for an hour than be useless all the next day. It really makes a difference to your ability to work on your recovery and the quality of the time spent with your family.
I wanted to say that Jack is truly adorable. My grandson wore the same kind of cute giraffe costume a year ago!
You are an inspiration!
ReplyDeleteThanks Linda for all the encouragement. Recovery just seems so much easier to me when I have a whole team of experts directing/guiding me. I know I'm gonna get better too...I have to!Thanks for the sweet comment about Jack too...of course we think he's cute too :)...but his personality is the BEST. He's the funniest little person I've ever met...he's got it all figured out at two.
ReplyDeleteThanks Aly...I'm just working hard to get better one day at a time here.
Elizabeth