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Bare Naked Truth


justsurviving

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Sometimes, the truth hurts. Especially when it is the Bare. Naked. Truth. I've been in, and seen people in, denial about the truth - willing to argue that it isn't the truth. I know that each person's perception is their reality and when someone else points out what seems to be a truth to them, it creates a dent in someone else's reality.

 

Here is the nitty gritty: The most difficult Bare. Naked. Truth. I had to deal with came a few short weeks after the stroke. No one, absolutely no one can help the stroke survivor. All of the work has to be done by the survivor. There isn't any neosporin, band-aids, cold compresses that another person can do/provide to help. No matter how caring or giving a caregiver is, the stroke survivor is the only person who can wage battle to improve. This cold hard fact became real to me when at one point, I laid on our bed crying uncontrollably and begging Bob to help, please help. Couldn't he just take this away for a day, an hour, a minute? It was unbearable to deal with. I know he felt terrible that there was nothing he could do. I had to deal with it. No one else could help - no talking, therapy (physical or otherwise), nothing could help me deal with it - it was all me.

 

Current truths: the stroke has left me with oddities;

 

My hair isn't the same, it is coarser and wilder that it ever was before.

 

I used to have a great memory - not so much any longer.

 

I am jealous of people who seem to walk so easily without thought.

 

I have almost overcome the impulse control issues - really weird and difficult to deal with, but I am working on it and am feeling successful on that front.

 

I am working on dealing with people - I seem to have a difficult time with small conversation and relating easily.

 

I am working on being more positive. The negative feelings seem to be easiest and rise to the top faster so I need to work on being more positive.

 

I was a work-in-progress BS (before stroke) and the stroke just added to the pile and seemed to take away previous progress. No worries, I'll get there again. (see? positivity in play!)

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hey Sherri:

 

. I agree with you completey, I remember blogging about it, I used to feel that post stroke journey is very lonely journey, and no one else can take it for you. even your lovely caregiver ur soulmate, ur family, no one can take that journey for you. we have to walk on this path all alone.

though site like these do provides waves & cheers of other survivors who understands what we are going through on daily basis. how frustrating is it to ask for help and wait for that help to arrive. how frustrating is to loose your job which filled your time and made you happy, in blink of eye. though I remind myself everytime I feel sad about it that I have choice here, should I sit here & cry on my pity pot or go & tidy up my closet :D. I guess I am done with my soapbox & will go fix up my closet.

 

Asha

 

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No one else could help - no talking, therapy (physical or otherwise), nothing could help me deal with it - it was all me.

 

Sherri, I can't imagine even a small portion of what you've gone through and I won't insult you by even implying that I can relate to any of it, on any level whatsoever. For all the turmoil I've had in my life and all of the ups and downs of deaths, divorces, etc. - all my 'catastrophes' - great and small - pale in comparison to such a life-changing event as you've had.

 

Having something like this happen to you - something that you had absolutely no control over and no possible way to predict, prevent, or prepare for as it came out of the blue - something that affected your life so profoundly, deeply, and negatively on every single level - physically, mentally, spiritually, cognitively, etc. - it boggles my mind to even try to imagine what you've been going through.

 

That feeling of being alone - and coming to terms with the Stark. Naked. Truth. . . . the way you describe it all - my heart goes out to you but instead of pity, I'm filled with pride and admiration that I have the privilege to know someone like you - you're amazing. I hope you realize that and also take some pride in how you've handled everything, what you've overcome in spite of the odds and the setbacks, and how much the people in your life love, admire, and respect you.

 

Hugs!

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Hi, Sherri. It's true that only the stroke survivor can do the work that may (or may not) result in getting better, and that is lonely, and frustrating, and scary. As a caregiver, the most frustrating thing for me is that all of those things are true, and that I can't "fix" anything. Only my husband can do that. I can encourage, and hope, and do research, and file paperwork, and make phone calls, but all of those things are just peripheral. He has to want to get better, and his body has to be strong enough to do it. Larry's stroke has totally changed my life in many ways, and even if he were to recover completely right now I will never be the same person that I was before this happened. Neither will he. That means that both of us have to learn to live with the changes, and to find a way to accept all of these changes and create a new life together.

 

Here are some of the ways that stroke has changed my life:

 

-My short term memory is gone. If I don't write it down it just flies out of my head.

 

-Things that used to give me pleasure - reading, gardening, eating - have become mechanical. I do them because it's a necessity, not because I enjoy them. Hopefully some of that will come back, but right now I feel like I have aphasia too - nothing makes any sense.

 

-My hair has changed too! It's coarser and harder to manage. Must be because of the stress.

 

-Speaking of stress - I am stressed to greater or lesser degree every minute of every day. My stomach never relaxes.

 

-I don't have dreams anymore, or if I do, I'm not remembering them at all.

 

-I often wake up sobbing in the morning, and have trouble making myself get out of bed.

 

-I have become a bitter, complaining, suspicious shrew of a woman when dealing with the SNF staff, the insurance people, and anyone else who has the power to decide what kind of treatment and care Larry will receive. I've learned that if I don't make a stink, put up a fight, file formal written complaints and otherwise be a total b**ch, Larry will be warehoused and they will steamroller right over me. I do not like this new person very much, but it seems to be the only way to handle this and everyone is going to have to get used to it!

 

-I am a compulsive house-cleaner, because I have nervous energy to burn. I'm up sometimes at 3AM scrubbing the kitchen floor. This is NOT a problem I ever had before.

 

-I'm learning how to mask my emotions, which I'm not great at doing. When I go to see Larry, it's not helpful if I look at him and cry, so I'm learning how to turn that off and put a smile on my face even if I feel like the opposite of smiling. I don't know that I'm fooling him (or anyone else) when I do this, but all my tears help nothing and I have to try.

 

So, as a caregiver, I would say that I'm "just surviving" right now too. I hope that this gets easier as time passes, but whatever happens we do have to face the reality of our new lives, and be strong. Some days I feel like I do that pretty well, other days...not so well.

 

Thank you for your post - it's interesting to think about all these changes and try to figure out how to channel it all into something that can ultimately be positive. I did manage to get my husband's home office painted, and I've been trying to do that for 5 years, so there's a start!!

 

xxx's and ooo's

-Janine

 

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sherri,

first off i am sending you a big hug and second just letting you know you are not alone in your feelings about your stroke. you are so right - no one can do anything to make stroke better. our friends, family and spouces can support us -if we are lucky -yet it is still us who live with the effects of the stroke in a way they can never understand. you are right, it is up to each of us to work as hard as we can to overcome our deficits.and it is very important to be gentle and kind with ourselves --no one does stroke survivor perfectly.

i have said to my hubby barry at times when i feel the walls crashing down and my spirit begins to waver...i don't want to be like this! i hate this! yet again, we can have thier understanding and care but it -in the end - is our life and stroke. i am coming up to my 3rd year mark and only recently have begun to realize that my stroke is here to stay. it was not just a nasty visit.

keep doing what you are doing to be better and remember there are others that are slogging thru as well. keep up the positive attitude as much as you can as attitude is the key to a good life. cheers! kathy

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