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Someone Like Me


SassyBetsy

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I wonder if I am the only one who had to go into a nursing home and if I will ever get to live a normal life again. That is why I push and do not accept it when they say oh here is a cane now practice therapy at home. I need to get out of here and have my therapy days. This past therapy the PT said if I do these 3 exercises everyday I will improve. I was not impressed that some squats and headturns is enough. He hurried me along recommending a cane but I know I am even unsteady with my 3 wheeler. I put a backpack on it and that goober went on about how I use it as a cart.

After 7 weekly sessions he basically said goodbye goodluck. Of all the therapists he spent the most time talking. And the topic was how great I walk and that I do not need therapy. And he basically scolded me for being there as if I was taking time from another needy client. Plus all his atta boy's about all his years of experience knowing all about it. He said he did not see my eyes problems.

So I went to my next primary doc appt. asked about my progress. I said so is this the answer that there is nothing else but walk around and do knee bends? I know pain interrupts my plans to move around at all. I want a coaching program I admit and therapy nowadays is show and tell with some handouts off the internet. But is this all there is?

The doc hurriedly gave me a referral for more therapy saying few words. But I already know. I have a wonderful neurologist for the past 2 years already who put me in therapy over and over. He said some things will be forever but probably with improvement. 

It does not get any more vague than that. So I alternate between hopeful to some downhearted acceptance I feel boxed in to embrace while I do a homestudy course. And I do not want miss the really fun important work I only get to do in the lab. I mean gym. Standing on a rolled up towel does not make me feel the same as standing on a foam thing. I will need some supplies if I am to do it at home. 

There is no one to play balloon badmitten with and no balance board. Not even an obstacle course. How do I replicate? And no one to keep me from falling into despair that I will not improve more or inspire or hold me accountable.

When I mention that just getting to the appointments is therapy itself as I am getting out of my limited space.

I guess therapy does not last forever. Why? Is not there more? A next level? 

They suggested a community college adapted P E course. But They took my license plus I cannot travel alone for safety reasons and I cannot walk far. And they say driving a motorized is not safe. And pain comes. Then the reasons I cannot live alone like stay away from stoves with my numb hand that works.

I am Oliver here expecting more.

Because I have improved. somewhat. I used to be worse. 

My roommate gets therapy here. They come move her around a bit. She cries she is not improving. I think the longer she is in bed......

I do not want that to be me.

I want a program. 

Oh wait. I forget. The pain makes it impossible to get off this mega dose meds that make it possible to get up and not  be in pain. Sometimes the meds help. some days not so the RFA is what they insisted would be good to try. It wears off and then it is apparent my nerve bundles did not reset off their course of always interprting every sensation as pain. Life. It has shrunk to pain management every moment.

But I want to run. I practice some steps that look like simple dance. open my arms. I feel dizzy sick. I cannot go sideways well. I keep my body stiff.my eyes down. The closer I am to the floor I am happiest.

My neuro said my cog is good but The Meds make lots of problems. I dream what if I could stop them but then it hurts so bad I cannot even space out doses.

I Never read about someone like me. I try and look. Am I the only one who lost home and lives in a nursing home?  

 

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Bessy:

 

I can understand your questions I had some of them. Every stroke is so different & so is recovery. I know how bad I felt when they sent me home, I was afraid of how will I be able to live home alone, but with support from family I was able to create my new normal & started enjoying my life again. I feel when you reach acceptance in life, its quite serene place to be in. Though I understand living with constant pain is no joke, and you are one strong personality to be able to handle all this in your life.  I will keep you in my thoughts & prayers to find relief soon & accetable solution to your new normal life.

 

Asha

 

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I know a few young adults who live in a nursing home.  Some because of pain meds that can only be authorised there, some because of mobility issues, some because basically there is no-one who will take the responsibility of looking after them as much as they need.  I wonder if you can work on some therapy you can do with just the minimum equipment.  I am thinking of a bar to hold onto while you do some knee bends we used to use the verandah rail while I spotted for Ray.  A rolled up towel is not a foam roll but better than nothing. Think about sitting in a chair and rolling a ball backwards and forwards with your foot to strengthen your ankle too.

I know Ray got very frustrated with his lack of progress he last few years he was home with me.  It was our plan to do a lot of things in our retirement that never happened because of his condition.  He did have a year in a nursing home at the end of his life when he got beyond my ability to look after him.  I will always have some regrets about that. But I did go every day to make sure he got the best treatment possible.

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Sue please do not regret Ray in a nursing home. Your words made me realize I complain and fail to think on the people who take good care of me and why I am here too. Yes disappointments cause me pain. I do not want to be a burden on anyone either. I picture you and Ray being together at the home and going through it together. I bet you made sure all was well. I know Ray was never alone and that besides you he had caring nurses.

So thanks to your posting I am listing the good important people in my life here that I would miss if I did move. They take good care of me. And I am on terribly strong pain killers and unable so unable. I know that from my time going out of here.

It is hard to accept hard to wait for improvement yes.

Maybe I just needed to vent it off my chest. It took a care giver's perspective to snap me sane again.

I love some residents here. It is like living in a big house with people. I believe it better than being alone.

Today my cna went to kitchen and made me orange infused water, my nurse got me up for pain meds and my roommate and I watched tv. They came to help me have hot water for tea. I wonder at my discontent. I am alive and ambituous to have more freedom that is not practical. Thank you for showing me my blessings.

Your Ray was so lucky and loved. Even though you did not get to do some things in retirement you had an incredible time together in so much love. That is all we need for a great life.

When I get a care package I do not care what is inside only that someone reached out  remembered me.

I regret being a diva sometimes.

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