It's Just Benign: Connecting Benign Brain Tumor Survivors Everywhere
Confused, disorganized and I can't seem to catch up.
Is there anyone that has problems with managing their everyday life? I am way more disorganized than I was before surgery/radiation. I feel so far behind that it feels impossible to catch up. I also find myself confused about things that are relatively simple to understand and have to "fake it" to others and pretend I know what they are talking about.
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Replies to This Discussion
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Permalink Reply by Rose Hominick on -
Hi Darin,
I can relate toyour feeling sof disorganization. I think that is a problem for a lot of people whohave had brain tumors. It is helpful to not that because of your brain problems you are experiencing a type of brain injury. Perhaps you could contact a brain injury association in your area. They might have some programs set up to help with managing your everyday life. As for myself, I have hbeen most successful when I have made detailed plans.of the "do this ,first, second, and so on" variety. This is hard for me to do, because I am, by nature a very spontaneous person, but honestly, the planning and making of list works if you can get into the habit of it. How long has it been since your surgery and radiation? Things will probably get better with time, and practice.
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Permalink Reply by Jane Edgell on -
*Yep..that's me! Sometimes I wonder if I am really disorganized or the things that were once important to me just don't seem as important to me anymore...so I don't do them. However, I do know that lack of energy has a lot to do with disorganization.
*You probably have some cognitive issues, too. One day I couldn't get my seat belt fastened. I opened the car door and checked around to find the clip...couldn't find it. Got back in and told my husband I couldn't fasten my belt...then realized I was not on the driver's side, I was on the passenger side that day...so needed to cross belt over to the left side of my body instead of the right! Many times I haved walked out of the bathroom and can't remember if I brushed my teeth so walk back and see if my toothbrush is wet...decide it may be wet from the night before, so I brush again to be sure. I'll pick up the remote to call someone...well we have an excuse don't we?
*I will laugh about it and my family will make jokes or smile and shake their heads. And that is OK with me...if I can make someone laugh or put a smile on their faces for whatever reason...I've brightened their day.
*Now I will say that I write things down that I want to remember. Tape them to the frig or the car dash or clip them on my purse. I ask people to help me remember something I need to do. Don't be afraid to ask for help...your tumor's side effects are not of your doing...and most certainly be open about how your tumor has changed your life. The more people know about how they effect us the better. Most people think once the hair grows back we are cured! Not so...our lives have been changed forever. We have to learn to live with our deficits the best way we can.
*And don't worry about catching up...we are always running trying to catch up and we should just be maintaining.
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Permalink Reply by Beth Rosenthal on -
It's been extremely difficult for me, too. I started using planners years ago, more for doc appointments. Now it's more difficult between working my job, this site, and everyday life. I'm trying to prioritize and need to learn to take advantage of the days that I feel well. It's a challenge.
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Permalink Reply by Sandy Belaire on -
For me, it was going into surgery having been an "A" -type personality all my life and waking up as a "B!" And, I, too, have troubles with the small things, but that makes me experience life at a slower pace!
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Permalink Reply by Darin Wedemeyer on -
Thank you all for sharing and for all the tips. It's been nine years since my operation and radiation and I was hoping that I would just get used to my new life at some point but the truth is, I have found out for me is that everyday is different. In fact, on most days every hour can be different. I used to feel somewhat intelligent and now I am told quite often that I don't make sense when I communicate which makes me feel at times like not trying because I can't explain myself anyway. This has been particularly true with regards to my marriage. After 22 years, my wife filed for Divorce and during this entire 2 year process, she has come after me with a vengeance. Somehow, to her, during the last few years when I started to have more brain issues, I became a lazy, unattentive husband and father. I have not been able to get ANYONE to understand fully that I do not understand things like I used to, I am so overwhelmed, extremely lonely and I have become almost apathetic about my life because of it. I am thankful that there are people out there that understand that we are mostly just trying to cope with our new lives that we did not choose and that we need way more help than we used to. I am so thankful for this website!
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Permalink Reply by Ralph Hill on -
Hi Darin,
yup, i can relate. My wife is not divorcing me however we are as 'seperated' as we can get in a little 600 square-foot house. I guess the change is that the tumor and the treatment have only 'amplified' the negative behaviors that I had before. I'm not able to work, so I'm a stay at home dad for our two boys and I have a lot of trouble keeping the house clean, the dishes done, and the laundry. never mind the day-to-day paperwork ...that's just all one disaster after another.
so you're not alone.
Darin Wedemeyer said:Thank you all for sharing and for all the tips. It's been nine years since my operation and radiation and I was hoping that I would just get used to my new life at some point but the truth is, I have found out for me is that everyday is different. In fact, on most days every hour can be different. I used to feel somewhat intelligent and now I am told quite often that I don't make sense when I communicate which makes me feel at times like not trying because I can't explain myself anyway. This has been particularly true with regards to my marriage. After 22 years, my wife filed for Divorce and during this entire 2 year process, she has come after me with a vengeance. Somehow, to her, during the last few years when I started to have more brain issues, I became a lazy, unattentive husband and father. I have not been able to get ANYONE to understand fully that I do not understand things like I used to, I am so overwhelmed, extremely lonely and I have become almost apathetic about my life because of it. I am thankful that there are people out there that understand that we are mostly just trying to cope with our new lives that we did not choose and that we need way more help than we used to. I am so thankful for this website!
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Permalink Reply by Darin Wedemeyer on
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Ralph,
Thank you for the reply. You know, what you said about the tumor and surgery "amplifying" your negative behaviors is an honest way to put it and I feel the same way. However, I am learning that the focus should be more on what we do that's positive. You may have a messier house but you are at home with your two boys and that is a very positive thing. It is not your fault that things don't come together in your mind the way they used to. I hope you and your wife can adjust to this and if you need help, it is worth it for you two to get some.
Ralph Hill said:Hi Darin,
yup, i can relate. My wife is not divorcing me however we are as 'seperated' as we can get in a little 600 square-foot house. I guess the change is that the tumor and the treatment have only 'amplified' the negative behaviors that I had before. I'm not able to work, so I'm a stay at home dad for our two boys and I have a lot of trouble keeping the house clean, the dishes done, and the laundry. never mind the day-to-day paperwork ...that's just all one disaster after another.
so you're not alone.
Darin Wedemeyer said:Thank you all for sharing and for all the tips. It's been nine years since my operation and radiation and I was hoping that I would just get used to my new life at some point but the truth is, I have found out for me is that everyday is different. In fact, on most days every hour can be different. I used to feel somewhat intelligent and now I am told quite often that I don't make sense when I communicate which makes me feel at times like not trying because I can't explain myself anyway. This has been particularly true with regards to my marriage. After 22 years, my wife filed for Divorce and during this entire 2 year process, she has come after me with a vengeance. Somehow, to her, during the last few years when I started to have more brain issues, I became a lazy, unattentive husband and father. I have not been able to get ANYONE to understand fully that I do not understand things like I used to, I am so overwhelmed, extremely lonely and I have become almost apathetic about my life because of it. I am thankful that there are people out there that understand that we are mostly just trying to cope with our new lives that we did not choose and that we need way more help than we used to. I am so thankful for this website!
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Permalink Reply by Beth Rosenthal on
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Hi Darin. I'm sorry to learn about your divorce. I was operated on in 1986 and I'm still not used to my physical limitations. I still envision myself as the free spirited dancer and gymnast, but I'm not that person anymore either.
I started this website in May 2007 because I needed to find individuals who understand my situation. I never imagined how big it would become. It's the absolute first thing that I've been passionate about since my diagnosis. I never felt smart anymore either, like I used to. My grades in middle school dropped and so did the levels I was in. It was really devastating to me. I'm happy that this site is here for you, too. Running this site has given me so much. I'm very happy that you've been able to find comfort here. Because dealing with our "invisible" side-effects can be extremely isolating and heartbreaking!
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Permalink Reply by Sandy Belaire on
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Beth, how did you become so wise?! I know I speak for all when I say "thanks for creating this website!"
Beth Rosenthal said:Hi Darin. I'm sorry to learn about your divorce. I was operated on in 1986 and I'm still not used to my physical limitations. I still envision myself as the free spirited dancer and gymnast, but I'm not that person anymore either.
I started this website in May 2007 because I needed to find individuals who understand my situation. I never imagined how big it would become. It's the absolute first thing that I've been passionate about since my diagnosis. I never felt smart anymore either, like I used to. My grades in middle school dropped and so did the levels I was in. It was really devastating to me. I'm happy that this site is here for you, too. Running this site has given me so much. I'm very happy that you've been able to find comfort here. Because dealing with our "invisible" side-effects can be extremely isolating and heartbreaking!
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Permalink Reply by Beth Rosenthal on
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Thanks Sandy! My wisdom comes from the many hours that I speak about my brain tumor experience. I wish that my wisdom could help me create a career that would get me off of disability forever, would allow me to have a comfortable life, and would let me help other survivors! Please have a Genie sent my way!
Sandy Belaire said:Beth, how did you become so wise?! I know I speak for all when I say "thanks for creating this website!"
Beth Rosenthal said:Hi Darin. I'm sorry to learn about your divorce. I was operated on in 1986 and I'm still not used to my physical limitations. I still envision myself as the free spirited dancer and gymnast, but I'm not that person anymore either.
I started this website in May 2007 because I needed to find individuals who understand my situation. I never imagined how big it would become. It's the absolute first thing that I've been passionate about since my diagnosis. I never felt smart anymore either, like I used to. My grades in middle school dropped and so did the levels I was in. It was really devastating to me. I'm happy that this site is here for you, too. Running this site has given me so much. I'm very happy that you've been able to find comfort here. Because dealing with our "invisible" side-effects can be extremely isolating and heartbreaking!
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Permalink Reply by Bonnie on -
Beth,
You wouldn't be here providing this place for us to come to and share, to find help and support, to make new friends -- if it wasn't for your BT experience.
You wouldn't be doing what you are passionate about -- if it wasn't for your BT experience.
You have a career...something very worth pursuing right here. :)
A comfortable life is what you create, who you are, how you live -- not what you own.
If you were not on disability, would you be doing this?
Beth, you are wise, as Sandy said.
Focus on what you have, your positive qualities, the good you are doing ---rather than live a life focusing on the "what ifs".
(((HUGSSS)))...Bonnie :)
Beth Rosenthal said:Thanks Sandy! My wisdom comes from the many hours that I speak about my brain tumor experience. I wish that my wisdom could help me create a career that would get me off of disability forever, would allow me to have a comfortable life, and would let me help other survivors! Please have a Genie sent my way!
Sandy Belaire said:Beth, how did you become so wise?! I know I speak for all when I say "thanks for creating this website!"
Beth Rosenthal said:Hi Darin. I'm sorry to learn about your divorce. I was operated on in 1986 and I'm still not used to my physical limitations. I still envision myself as the free spirited dancer and gymnast, but I'm not that person anymore either.
I started this website in May 2007 because I needed to find individuals who understand my situation. I never imagined how big it would become. It's the absolute first thing that I've been passionate about since my diagnosis. I never felt smart anymore either, like I used to. My grades in middle school dropped and so did the levels I was in. It was really devastating to me. I'm happy that this site is here for you, too. Running this site has given me so much. I'm very happy that you've been able to find comfort here. Because dealing with our "invisible" side-effects can be extremely isolating and heartbreaking!
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Permalink Reply by Bonnie on
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Beth.....you ARE helping other BT survivors! :)
Bonnie Candance said:Beth,
You wouldn't be here providing this place for us to come to and share, to find help and support, to make new friends -- if it wasn't for your BT experience.
You wouldn't be doing what you are passionate about -- if it wasn't for your BT experience.
You have a career...something very worth pursuing right here. :)
A comfortable life is what you create, who you are, how you live -- not what you own.
If you were not on disability, would you be doing this?
Beth, you are wise, as Sandy said.
Focus on what you have, your positive qualities, the good you are doing ---rather than live a life focusing on the "what ifs".
(((HUGSSS)))...Bonnie :)
Beth Rosenthal said:Thanks Sandy! My wisdom comes from the many hours that I speak about my brain tumor experience. I wish that my wisdom could help me create a career that would get me off of disability forever, would allow me to have a comfortable life, and would let me help other survivors! Please have a Genie sent my way!
Sandy Belaire said:Beth, how did you become so wise?! I know I speak for all when I say "thanks for creating this website!"
Beth Rosenthal said:Hi Darin. I'm sorry to learn about your divorce. I was operated on in 1986 and I'm still not used to my physical limitations. I still envision myself as the free spirited dancer and gymnast, but I'm not that person anymore either.
I started this website in May 2007 because I needed to find individuals who understand my situation. I never imagined how big it would become. It's the absolute first thing that I've been passionate about since my diagnosis. I never felt smart anymore either, like I used to. My grades in middle school dropped and so did the levels I was in. It was really devastating to me. I'm happy that this site is here for you, too. Running this site has given me so much. I'm very happy that you've been able to find comfort here. Because dealing with our "invisible" side-effects can be extremely isolating and heartbreaking!
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