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Never give up


Pearls

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Many ups and downs but i always go to therapy and i always give it my all and something extra. Sometimes i give up on full recovery but never on improving where i am today. The difference between try and triumph is the umph. If i don't recover it will not be for lack of trying it will be because that's all there is. I'm not happy with that but that's who i am.

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Pearl, I think this is acceptance.  Acceptance is finding a place where you can still go forward but have accepted that you can't go back.  Took me many years to get to that point as my husband Ray had stroke after stroke.  But in the end I knew it was the only way to live.  Good for you for recognising that.

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HI Pearls

Glad to hear that you are going to therapy and hanging in there. I know it can be really frustrating to not be back to normal. I wake up every day and say What! More of this? I am ready for it to be back to normal and why not because i never had more to deal with than a flu or a sprained this or that and it always went away and life went on. This is going to be just like that in my mind and when they talk of brain damage and all that it doesn't register but when it does on occasion then I sob my heart out and refuse to accept it but it looms over me like a dark cloud and I don't know how to have hope and acceptance at the same time except to just live moment by moment and enjoy the day especially lunch after therapy which is always fun for me to be out and about. We won't give up and so I am glad to hear that you are not happy with the way it is right now because I think for me if I got happy with it then I wouldn't fight so hard anymore. It hurts so much to want to be back to normal and it hurts so much to keep trying and not see immediate results but it would hurt more to not keep wanting and trying so I get what you are saying. What a place to be. It hurts to look back and say that is gone now and I want to be standing there looking back and saying wow I never thought I would get back here.  I am no where near acceptance guess cuz I haven't realized exactly where I am standing at all. But as time passes I get discouraged and it hurts to accept that maybe I will never do this or that again. For me it is better to keep the denial or the fight or whatever this is that I cling to and just keep on going on. What happens when I don't get to go to therapy anymore and I am not at my goals? I hate to think but I will not despair today at all. I will enjoy the day as it is and do what I do and be in the middle of life not waiting for it to start or end or anything just live moment by moment. I am glad you will never give up and never give up hope. I am right there with ya. I had my future planned and mapped out before this happened and look how that turned out so I think I will just sit back and roll with it awhile and see how flexible I can be with but I guess because I am this diva who thinks I will eventually get my way. So we are never quitting this fight together~!

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Pearl, I wonder if part of the way you feel might be because they made you believe that a little therapy and you would be restored to 'normal'?   Stroke is not like you broke your leg, now you go to therapy, and after a few hard months of grueling work, you are back again.    Stroke rehab is strenthening and balance and learning to do things another way, now.   It is knowing that you have to keep at it, because those who didn't, became wheel chair bound, when it wasn't the only way for many of them.  (sure some need wheelchairs).   

 

Bob has losses in all areas, and we work like devils just to get the tiniest little thing returned, and then to keep it.   There is improvement that can happen, no closing of the window of opportunity, but it is not going to find you like you were pre-stroke.     Our big continual goal, that we have to always keep working on or lose, is that Bob remains able to get from room to room, with my help, rather than me having to break out the wheelchair.   He has gait and balance problems, but since he can be a little mobile (with my help) it is such a blessing, and we work to keep it.

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Actually what they made me believe was that with a lot of therapy i would recover. Now i am understanding that healing does not equal recovery. And getting better does not mean getting well. False hopes. Why can't doctors just be honest? Getting better means hobbling around and getting used to it. Healing means adapting and accepting the disability. I get it now. I will survive. I am not going to die. I am a survivor.

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Exactly right, Pearls.   I guess they do it because each person's stroke is so very different.... every stroke is different.   They really don't know how far a person can go, and if they set limits on it, the person will often quit and say there's no use, and so never get their ultimate abilities they could have back.    Some doctors tell people after a couple of months, that's all, or after a year, no more improvement.   But that is wrong.    People keep learning and accomplishing new ways of doing things.

 

The thing is, any improvements are soooooo slow to come, and working the whole time.    I remember reading a book after Bob's stroke where a doctor was talking to a wife of a stroke surv, and he told her, in the next year, you're going to really understand the meaning of the word "slow".      

 

Bob does still have little gradual improvements, which are like gold!    To someone else, they may seem like nothing, in the face of all his deficits, but to us, they are miracles!

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Yesterday i walked on grass! Walking on grass is a challenge. There are so many dips and bumps that you can't see and you have to lift your feet higher. It was the first time in six months that i walked around the outside of my house, my own house. I saw roses, and blueberry bushes, and the lilac bush my dh planted for me. I walked in the cul-de-sac and said hello to a neighbor. Some friends took me wine tasting and i walked down twenty concrete steps on my own!! A good sturdy handrail makes a difference. A good day! Was slow as a snail but you just have to swallow your pride.

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Hi Pearl, wonderful that you had a good day.  Yes my dear you do have to swallow your pride. Mr.  Strokes does that to you, but he is not going to win!  At first I was slow and did not want to get about with my cane. Did not get it that it was helping me at the time,  and  my father asked me" why are you worried about what people are thinking" he was correct such a wise man.

 

Keep on enjoying you strides that you are making. Keep us posted!

 

Yvonne

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I am really enjoying water therapy. It is so warm and relaxing and i am never sore or worn out afterwards. I can do so much more with my body in the pool, stretch muscles that would be impossible to stretch out of the pool. Getting in and out of the pool is anxiety causing but that is only a few minutes. I am not a water baby. I don't even swim. I have a good therapist that is fun to be with and that makes a huge difference. My dh helps me in and out of my swimsuit or else i probably wouldn't be able to do it. For all you men out there getting in and out of a tight swimming suit is real work. It's hard work even if you don't have additional problems. Oy-vay.

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After therapy today my dh dropped me off to have my nails done. It was an hour of luxury. Little things like thishelp me to feel normal again. I sipped hot cocoa and stared at the beach photos on the wall pretending i was in Hawaii. I tried explaining to the young Vietnamese nail girl about my stroke and my paralysis since it was obvious i couldn't move my arm or hand. S he smiled at me and started to massage my arm and hand. Then she took out her smartphone and showed me all these pictures of stroke damaged brains. Her best friend in Vietnam is a Neurologist. She was so kind and gentle and understanding. It was such an unexpected place to find such understanding and from someone so young. I 'm still smiling at her lovely manner. You never know where angels will come down and find you.

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So much time to sit and think. Too much time to sit and think when all i want to do is get up and move and be productive. I've been working it hard at therapy. Probably too hard. I push and push to the point of physical and mental exhaustion but i'm afraid to stop, afraid i might miss an important breakthru. If i stop to breathe i'm afraid i'm not working hard enough. I am walking short distances on my own doing the stroke limp. There is just so darned much to remember when i walk. Where are my feet, where are my shoulders, what are my hips doing and my knees, maintaining strength, maintaining balance, where am i going to fall, what is there to support me physically if i fall. Is my left foot leading or following, is my weight equally distributed between my two legs, is my timing off, are there any obstacles, am i dragging my foot, am i breathing, how much further, and lord forbid if anyone tries to touch me or grab my hand it sends everything into outerspace and i have to reorient all over again and make sure all my body parts are in unison and working towards a common goal. Sometimes i get distracted and try to let my body go on autopilot and i always end up in trouble. Autopilot no longer works. I have to think every movement through carefully and make adjustments thoughtfully second by second. I am the Mighty Wallenda on a tightrope, focused to capacity. I don't want to get up and walk because it is so tiring . Walk across the room and i am ready for a nap.. But i get up anyway, push, push, push . I want to be normal. Always looking for new ways to feel normal. I've lost a lot of weight so i bought this hot little black leather dress online. Where in the heck i am going to wear it i don't know. I'm not even sure i can go to the bathroom in it but just in case a miracle befalls me i am prepared to embrace it and celebrate it. After spending seven months in sweat pants and baggy tshirts i needed something to wow my inner woman. Sparkly heels would be nice but i'd have to go back to the wheelchair for that because i know my brain and my body could not handle it. Okay. Black leather dress, lots of pearls and fuzzy slippers.

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Living with paralysis is the separation of mind and body. It is like being on the edge of a dreamworld. Your mind says go and your body says no. There was a time when i could control my own body. There was a time when we worked together, one helping the other. If your soul is in your brain and part of your brain goes AWOL then part of your soul goes AWOL too. No wonder i feel bereft. I am missing the cohesive unison that i am so used to working with. I miss laughing and smiling and interacting with others. When i smile it is a lopsided grimace that no longer elicits a smile from my fellow human beings. It is a missing communicator that i relied on a lot. My nonverbal language is broken into pieces and no one understands that i am trying to smile at them and share uplifting human emotions. They just think i am looking at them strange but that is not what i am trying to communicate! When i look at a child and try to smile they look confused and wary. Their faces are so honest. Sometimes i think it is better if i don't make eye contact and try to smile. I practice in front of a mirror trying to unite my mind, my soul, with my body, make them work as one to communicate. I am an emotional spiritual flirt. I've always smiled to uplift someone's day. I've always reached out in a nonverbal manner with my eyes, my smile and my touch.. I can't do that now. It is part of who i am, part of my soul. I can't give and i can't receive the feedback. No one smiles back at me. I cannot connect with my own species. I am outside of the human loop. That is a strange place to be. I want to be human. I miss my tribe and i miss me. I am trying to find my way back.

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