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My name is Marjie, also known as Shorty. Before my stroke on 2/4/19 I was diagnosed with uterine cancer. The stroke delayed my surgery. 2 weeks later I had a complete hysterectomy to remove the cancer. So I am dealing with a double whammy. I am back at work but not myself. I also have high blood pressure, diabetes 2, insulin dependent, on 7 meds blood thinners. Gee what else. This is all new to me and extremely overwhelming. Which is why I sought out help. I am cancer free now and I should be on top of the world. But I feel like I have been hit by a big rig. Seeking support and understanding. My old self is gone. 

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Marie it's great to know your name. 🙂 Wow you have been through a lot! None of that "I should be on top of the world" stuff. Not saying that it's not great to feel that way, but Marie you've been through a lot in a pretty short period of time. I am so happy to hear that you are cancer free. Having a stroke can cause a lot of neuro fatigue after. Hence feeling like you've been run over by a truck. Add to that a cancer diagnosis, surgery, and a slew of other health issues... I am amazed at how well you are communicating with all of us in just 3 months. So on one hand you really seem to be doing great, on the other I can only suspect you are under a lot of stress and can really feel it. I so understand having to go back to work to survive. Be careful and listen to your body it will let you know when it needs rest. The brain works so very hard after a stroke to heal and rewire... That overwhelming exhaustion I suspect you are having is your brain saying "I need sleep" that is when your brain does a lot of recovery...during sleep. 

6 hours ago, Shorty said:

My old self is gone

This is a statement that I have heard from almost every stroke survivor if not all. That is a huge statement to say much less deal with. It will take some time but you'll get to know yourself again...some things may seem the same while other things different. Just know you have friends and support here. How is your support system at home? 

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Hi Marjie, Yes you have been hit by a big rig. Don't be surprised that you feel that way. This was why I said if it is possible delay your return to work. Of course that assumes that you have insurance or social assistance that will make it possible.  I was very lucky to have a good bank of accumulated leave as well as income protection insurance in my superannuation. So with that and a helpful employer I was able to take 6 months off work to concentrate on getting better and then do a very gradual return to work.  Not everyone is that lucky. and it can be very overwhelming even when you know that financially it will be OK in the long run, but getting those insurance claims in takes energy you can't spare when it has to be done.  Thank goodness my family was able to help.

 

As Tracy said that feeling of the loss of your old self is very common and one of the hardest parts of this new journey you are on. Be ready for grief and mourning. It may help you to look into the stages of grief and the spoon theory.

I like this one about grief and how you should NOT expect it to be https://www.psychologytoday.com/au/blog/supersurvivors/201707/why-the-five-stages-grief-are-wrong

and this is spoon theory https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/ which is about managing fatigue in a world that does not understand it. Brain fatigue is different to body fatigue in a whole lot of ways. You'll find lots of conversations on here where we try to explain it to each other. note your Dr/GP will probably have no idea.  So much of the time we end up teaching our Drs rather than the other way around.

 

Just keep positive that things will/do get better and tackle each day/hour/minute as it comes.

Hugs

-Heather

 

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Thanks guys. My support at home is non existent. I live with my sister and we couldn't be more opposite. She was at the hospital both times but in the ER she was heard yelling at me saying nothing is wrong and how I was wasting her time. I'm only here cause she feels sorry for me. My mom passed a few years ago. My dad is not really in my life. So I am pretty much alone. This is hard enough and then add no one there for me. It's just to much. I have tried to give up many times but my faith in God won't let me. I just want to run away. I'm a loner. A hermit. No friends, just co-workers. Pitiful isn't it. Now being sick and diseased I really feel isolated. 

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As my neurologist told me once, you aren't sick or diseased, you're injured. You have friends here who can help and be there for you, virtually anyway. This is the place where we will listen and understand because we've been there.

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Thanks Scott. I appreciate that. 

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Marjie watch out for negative self talk! which will be very hard if your sister is also reinforcing it. You are on a journey to reprogram and rewire your brain and your self talk will be a vital part of that. You are not sick or diseased, the cancer is sorted, your brain is temporarily broken. and these are separate things anyway. You are recovering and you are a worthwhile person. Your sister has no right to take the high moral ground or to take her frustrations and probably fright out on you.  you're not pitiful you are reaching out for support and we are happy to provide it. Hang in there!

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Marjie, You have been through 2 major events almost simultaneously. Each of these events is capable of wreaking havoc on your body's chemistry. Because of the hysterectomy,  YOUR HORMONES ARE PROBABLY OUT OF WHACK,  AND YOUR BRAIN WOULD NORMALLY TRY to help, but it can't right now because it has been injured by the stroke. The result of all of this dis-harmony can be depression, which you can't control. Ask your doc for an antidepressant if you're not already on one.                    As for being "diseased", your cancer is gone. But your high BP, AND DIABETES AREN't, and both of these can be affected by dietary changes and exercise. So why not focus on what you can change, instead of what you can't? Then give your body time to heal. Good luck.   Becky                                                                                                                                                                                

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Yes Yes and Yes!!! Marie I agree so much with everyone. Not sick and diseased but recovering from an injury to the brain. If anyone belittles you or talks to you in a negative way... You just remember "My brain is damaged, what's your excuse!". Of course I don't say that to cause friction between you and another...but man have I been there. I know what it's like to internalize these things and to be at such a fragile moment. Your self identity has taken a blow... It's OK to cushion your force field. 🙂 I wondered if you had checked to see if there is local stroke support group in your area? Having people in your corner is great. BTW I can almost promise you will have so much relatable things. It's kinda like when you came and talked to us...you will get understanding and support. I am now very (anti social), people and places and things are all too much for me at times but I used to be the social butterfly. I was a bit nervous when I first went to my local meeting. Besides becoming a member here my local stroke support group is one of the best things I have found. I actually love being around these people. It made me feel some sense of normal when I am experiencing the total opposite of that. I wish you so much positive... ❤️❤️❤️

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I'm gonna say it again... Yes! Try your very best to focus on what you Can do. It is great to reinforce positive self talk with positive for you actions. BTW breathe... 🙂 You do not have to be on anyone's time line. You go at the pace that feels good and doable to you. 

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Thanks everyone. Your words are very comforting to me. My sister started on me when I got home last night. I told myself to not say a word and I remained silent. Which was hard for me. If I could leave I would. I tried to find a local group but was drawn to this group and I always follow my instincts. I will keep going one day at a time. 

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Hi Marie

 

As everyone else has said, you've been hit with several tsunamis all at the same time.  Just being on your feet is a huge leap forward.  I'm afraid that I am terrible at the touchy-feely stuff, but not bad at the practical issues.  What I have learned the hard way is that you need to put yourself (and your recovery) first.  You brain has had a _huge_ insult, and will be slow and erratic while you recover.  There are things that you can no longer do, or no longer do as well as you could.  Things will change, most will improve to a greater or lesser extent, but this does not happen overnight -- you will still see improvements a couple of years from now.

 

In the meantime, you need to try to give yourself some leeway, and not beat yourself up.  Not sure how much you can do about your sister, other than trying to get her to understand.  One tool that I have found very useful (found out about it from this very group) is spoon theory.  https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

 

It explains quite succinctly how much of an energy drain a brain injury is.  If you can persuade your sister to read it, she may be able to understand a bit more of what is going on.  Obviously we do't know the history between you two, but if you CAN get her to understand, even a little bit, it must surely help.

 

And please feel free to pour your heart out here.  Doesn't matter what, or how stupid it may feel.  I've done that a lot, often with really trivial issues, and have one ever been met with warmth and understanding and compassion.  This is a group of _really_ nice and friendly and compassionate people, and we have gone through (and are still going through) what you are. 

 

My heart goes out to you.

 

       paul

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Thanks Paul. I'm not or haven't been a touchy feely person until all this happened. My sister has her own issues. Like being bi polar and on meds. Just to name one. I guess that's why I like coming to work. Getting out is my break. So we are just together on weekends. My doctor won't let me work overtime or I would. I usually go to Wal-Mart on Sat mornings, get groceries and walk around wasting time. I will read the article. Wouldn't hurt. I guess I just don't understand what a stroke really is. I just remember being horrified when I couldn't even get ready for work that day. Really terrified me bad. I literally just had my stroke so this is very fresh and new for me. 

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It's quite understandable to want to be all better right away.  While I was in hospital I was sure that I was fine, made some totally incoherent phone calls to friends until my wife took my phone away.  I only _started_ to get an idea of what the impact was some months later.  Three years on, I'm still seeing changes (for the better).

 

It sounds like you're really lucky if you are able to get back to work this soon, in whatever capacity.  And getting out and about is always a good thing, whether Walmart or just a walk down the road or in a park.

 

But do remember that however mild it may feel, this is a major insult to your brain, and you need to take care of yourself.  Which includes watching your spoons, trying to find what makes you calm and happy, asking people for help.

 

Unsolicited and probably impractical idea:  While it sounds like the situation with your sister is pretty rough, is it possible to try to explain to her (or point her to resources) about the impact of your stroke?  I'm probably wayyy of track here, but this could even be an opportunity to improve matters between the two of you.  But maybe that os just wishful thinking on my part.

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I come to accept how we are. Before I moved in we never spoke. I'm kinda done. I want my brain back. I want my body back. I want me back. And it's *beep* me off those have been taken from me. My job is amazing. I do the live chat for my company. Very easy and laid back. No stress here. And my boss is even better. I'm very hard on myself and I want to get better now!

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2 hours ago, Shorty said:

I guess I just don't understand what a stroke really is.

I know that you must have lots of questions about your stroke.  If you like, you can go to our Stroke Education website and read about it.  There is a very good video that will do a nice job of helping you understand what a stroke is.  Also, you might want to browse through our Media Kit if you want to understand what are all the services and resources available at The Stroke Network. 

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Perfect. Thanks

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One step at a time and don't let someone who hasn't been there talk downhill to you, they just display their ignorance. I started with just concentrating on getting my hand to open, took about a month but one day the fingers moved a little, I celebrated that small act with the nurses in rehab and it set the ground work for what came later. 4+ years later I have a lot of function back in my arm and hand, can walk and mostly think and talk. Still a work in progress. Set yourself a goal and strive for, if it doesn't work today there is tomorrows efforts that may do it but just never surrender. I know people who surrendered and there is nothing good down that road.

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I'm so glad your hand is coming back. I remember when mine returned. Yea!!!!!!. I just drop things a lot. But for the first time the other day I laughed at myself. I'm doing the best I can for now. Am I the only one in Florida?

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9 minutes ago, Shorty said:

 Am I the only one in Florida?

I'm in west central FL.

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I'm up in Jacksonville

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Margie you really have a wonderful attitude. 🙂 If you have any questions about your stroke the info area Steve was telling you about is great. I am pretty sure any of us will help in any way we can. If you want feel free to DM me or Steve. Actually, everyone who has said hello are truly wonderful. I'm proud of you that you stayed quiet with your sister. I 100% know how hard that is! Keep thinking "In one ear and out the other". I'm not disagreeing with Paul at all... There are many ways to help others understand and empathize. I am familiar with bi-polar and that in itself makes things more difficult. If you know it's one of those moments...don't feel the least bit bad if you choose to not engage. In one ear and out the other. If you have your own room excuse yourself, go in and shut the door. Earphones and comfortable music can also help. Also things that don't need any emotion to do... When I had severe anxiety moments I would do find a words I bought from the dollar store. I needed easy and they were easy lol. But you can do whatever you enjoy. It helped to get control of my stress level. 

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Yes. I do the easy word finds and I love to color. I was embarrassed to say that. I told myself how she treats me is her karma and how I react is mine. 

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Coloring was one of the 1st things I could try to do the first few months after stroke. 🤗 My daughter was 19 and she would buy a giant coloring book because I couldn't stay in the lines or see it too well if not. We would color Anna and Elsa. These were such happy moments I had regressed to about 3-5 for a good while and she sat with me on the floor and colored. She also helped me get a bubble bath every night. I ayed with the bubbles like a toddler would. I remember. She played with me... Oh man that just brought on the feels. Hailey took care of me like a mom for a while. I am really glad you are doing as well as you are. Even though it may not feel like it I think you are and it's wonderful! 

29 minutes ago, Shorty said:

I told myself how she treats me is her karma and how I react is mine

Wise words Margie. 🙂

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Thanks. I just have to ignore the ignorance. Coloring was the first thing I did when my hand returned. I wasn't the best but ya know.

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