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Getting better vs. not getting worse (long term survivors)


CagedBird

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I did my two sessions of PT. I do my 3rd one on Friday. Each time I get different exercises (and its a different therapist). I am really anxious to start OT. Time has gone by so fast. When they told me I would have to wait until next year I was so disappointed but my OT evaluation is actually next Friday (January 4) :) I got 7 exercises to do at home from PT and boy do I feel the stretch. I felt like I just had my stroke the day before I last went to therapy. I felt so helpless and kind of bad. I thought I was doing good walking good but in reality I have some major issues with leaning to my left side. I couldn't believe how scared I was just to stand up and sit down (without leaning to my good side). I guess I have a lot of work to do. I just hope I can keep it up. I did all 7 of my exercises and went to my apartment gym to ride the exercise bike. I wanted to do the stairs as well but somebody is always on the good stair stepper. The other one doesnt have any straps or back piece to keep your foot from slipping so I decided not to use it. My PT told me I could use the treadmills too but that day I didnt want to overdo it so I just walked to my doctor appointment which is only a mile from my house and took the bus back. It felt good to do the exercising (mentally not physically LOL) but I hope they pay off in the end. My PTs have all told me even though Im walking good I have to keep exercising so my leg will stay strong. If anything my overtoned contractured wrist and fingers have taught me that you can get worse when you give up on getting better. So I am going to try to stick with doing my home exercises and frequenting the gym after my little trial runs out Friday.

 

I contacted my insurance provider to find some OTs and PTs that are in network but nobody returned my calls and a lot of the facilities did not answer. The ones that did answer of course told me they were out of network. I sure wish I had someone to help me. The wrist support Ive had for 3 years is starting to wear out. Either I have too much tone or the velcro is crap now but it wont strap down anymore when I put it on. I still have my comfy splint but it hurts so bad since I guess I have contractures in my middle and ring fingers with the most tone.

 

I use my hand at work sometimes as Fred suggested. I make a space between books then reach my left hand in to hold them apart while I grab the next book to go in the place. I am at a public library so I still do not feel comfortable enough to push the book cart with both hands. Im afraid my hand will drop off as Im pushing and bring even more attention than when Im pushing with my good hand with my left arm bent in front of me.

 

Some days are very hard. One day after talking with my coworker about my stroke, I felt down. Sure she was telling me how Im such an inspiration but I couldn't help but focus on her question "Do you think God can still heal you?" I guess I gave up on "healing". I think I can get better with the help of technology medicine and exercise but I no longer believe in the "miraculous healing". I've been to the altar too many times. I guess the man with the withered hand in the bible was the last hand Jesus felt like healing. Anyway that same day I was kind of down in the dumps and confused thinking about healing, acceptance, faith, etc. I was trying to wash dishes and it seemed extra difficult trying to do it with one hand. To add to it, I was trying to scrub a pan I burnt because I didnt have 2 hands to pull my burgers apart when i was cooking the day before and I had a mess of dry noodles in the sink from where I couldnt move the faucet out the way while filling up the cup. I had a little break down and shoved the faucet out of the way knocking over some of the dishes. I just couldn't take it. Sometimes I just wish I had someone to help me. To wash my dishes, to help fold my laundry, or at least to do stretches with my arm before bed when my good arm is exhausted and fatigued from doing everything else all day. Its hard being a "long term survivor". You have to accept you wont get better but still be motivated enough to keep yourself from getting worse while PTs OTs doctors and insurance companies want to be "debbie downers" and remind you of everything you cant do and never will be able to.

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All I can say is put that left hand on the cart handle and your eyes are what guides that hand not the mind or brain that connection is long gone!! You ever sit down and after a while you realize your left foot is still where it was when you sat down??

 

I do it more so in church when I look down my right shoe is almost under the pew in front of me while the left foot is still where it was when I was sitting down so I don't fall backwards!!!

 

My first 5 minutes after sitting down I'm shaking hands, hugs and kisses from the sisters before I settle down in thoughts!!

 

I'm very glad you didn't give up on therapy and when they change up it stays interesting rather than same ole routines time after time!!

 

Just got to remember you did nothing after the stroke, no therapy or guidance at that age and you didn't know what to do to get better but look how far you have come since you know what to do!!

 

You are talking about almost 10 years of doing nothing to gain use of the left side compared to me staying in the hospital 5 months after my stroke with therapy daily then more therapy where I learned to walk!!

 

If that had happened to me I would be in bad shape trying to function and in a WC too!! You are still in my daily prayers and one day I hope to meet you and others there in NC and Maryland!!

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Katrina :

 

I don't believe in faith healing, I believe earth is school & we are here to learn our lessons in life. As a human I feel sometimes we learn more valuable lessons in adversity than in joy. when you start focusing what you can still do even after going through frustration of doing with one hand, you will find joy in it. hope you start writing 5 things you are greatful every day in the night.its one of the tool I have used & it has brought me lot of peace.

 

Asha

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Katrina,

You are such a shining example of overcoming adversity. You are getting new exercises....different therapists....You are getting better. Recovery from a stroke take along time. It is sooooo slow. We can't even see the progress we make because it is so slow. But, you have really come along way. I can't even imagine walking to the MD's office. A job!

I do wish that you had somebody to help you. I cannot imagine, William, without help. But, women are strong and more resilient. Those down times come to each of us. But, you have a bubbly spirit and it rises to the occasion all of the time.

 

Keep up the good work and keep us posted on the new exercises that you get.

 

Ruth

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Guest hostwill

Posted

KATRINA,

 

I TOO HAD THE PROBLEM OF LEANING TO THE LEFT. ASK YOUR PT TO PUT YOU ON AMACHINE CALLED A "BALANCE MASTER" IT WILL SHOW YOU WHERE YOUR BRAIN THINKS YOUR "NORMAL" UPRIGHT IS. IT SURE HELPED ME, AND I HOPE IT DOES FOR YOU ALSO. NEVER GIVE UP! YOU HAVE COME SO FAR.

 

-WILL

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Katrina, I think the wishing someone else would do...whatever..is just a part of being on your own as I wish those things sometimes too. But unlike you I do not have stroke fatigue and I think that is still a big factor in your life. Slow and steady wins the race in stroke recovery as you know, and keeping active also breaks the depression cycle.

 

I think you are doing well, I know sometimes that doesn't help but hopefully remembering we are all still prayng for you, for strength to go on each day, will.

 

Sue.

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