Guest guest Posted January 17, 2012 Report Share Posted January 17, 2012 I get no respect for memory problems because ... I used to be able to remember the date, time and appointment for months without a calendar. I used to be able to check dates for conflicts in my head. Someone would ask me about a particular date and I'd know something was going on, then, just a moment later, I could say what, and what time of day, it was. So, when I began using a calendar, ya know, like everybody else, I got no sympathy. : ) But, I felt the loss. Feel the loss. Yes. Even extra special memory powers when no longer there in the same way requires a period of grief. But I love using calendars too. And I love ysing calendars and contacts on my iPod and, since day after thanksgiving, on my iPad. I am grateful technology is trying to keep up with my (newer) needs. toni cf-alliance.tripod.com/ from iPodTouch Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2012 Report Share Posted January 18, 2012 With everything else CFIDS brings, the loss of my brain was the worst loss. I have learned how to recover and deflect quickly when I am in conversations that I get lost in. I guess my brain has compensated somewhat for what it has lost. I use notebooks and pads all the time. I have to start my day with my chore book and calendar to know what I need to do, if I am able to do anything. Checking off works well. I never even needed to study in college. Just read everything and could almost repeat it. I feel like I have become borderline retarded. This also applys to my activities. Like putting hitting the gas pedal instead of the brake, or putting the milk on the shelf and the cereal in the fridge. The worst was getting out of the shower w/o remembering to rinse off. My biggest loss was my brain. And I try to learn forward, rather than mourn. It really stinks. > > I get no respect for memory problems because ... > > I used to be able to remember the date, time and appointment for months without a calendar. > > I used to be able to check dates for conflicts in my head. Someone would ask me about a particular date and I'd know something was going on, then, just a moment later, I could say what, and what time of day, it was. > > So, when I began using a calendar, ya know, like everybody else, I got no sympathy. > : ) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2012 Report Share Posted January 18, 2012 With everything else CFIDS brings, the loss of my brain was the worst loss. I have learned how to recover and deflect quickly when I am in conversations that I get lost in. I guess my brain has compensated somewhat for what it has lost. I use notebooks and pads all the time. I have to start my day with my chore book and calendar to know what I need to do, if I am able to do anything. Checking off works well. I never even needed to study in college. Just read everything and could almost repeat it. I feel like I have become borderline retarded. This also applys to my activities. Like putting hitting the gas pedal instead of the brake, or putting the milk on the shelf and the cereal in the fridge. The worst was getting out of the shower w/o remembering to rinse off. My biggest loss was my brain. And I try to learn forward, rather than mourn. It really stinks. > > I get no respect for memory problems because ... > > I used to be able to remember the date, time and appointment for months without a calendar. > > I used to be able to check dates for conflicts in my head. Someone would ask me about a particular date and I'd know something was going on, then, just a moment later, I could say what, and what time of day, it was. > > So, when I began using a calendar, ya know, like everybody else, I got no sympathy. > : ) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2012 Report Share Posted January 19, 2012 I'm with you on the cog fog. It is by far the worst. I used to keep an entire business in my head, raised 6 kids, kept a spotless home, cooked meals, did crafts, sewed a lot of the clothing and quilts and was a body builder. Now it's all gone. I've had to give up both of my part time jobs and my 73 year old hubby is still working. Not being able to make the mind and the mouth work in unison is bad. Not being able to get the mind to work at all is agonizing. I have an above average IQ, am a Type A personality and had never slept more than 4 or 5 hours a night in my life until this hit. Now there are days I don't even get out of bed. I find things done that I don't even remember doing. It doesn't pay to try to keep on pushing through the tired. I can sit and look at something and not be able to figure it out when I've done that task a multitude of time in my life. Spent some time with our oldest and her family at Christmas and it was so draining that there are events and entire days I don't remember. There were pictures on my phone and camera and I have no recollection of taking them or even of who was there. My daughter says 'Oh yeah you met so and so' Even managed to come home sick for two weeks because on top of the CFS I have Leukopenia and catch any germs around. We won't even discuss the chronic shingles. It took me two years and five Dr.s to get even get a diagnosis. Finally was diagnosed at a major teaching hospital here in the metroplex. My Dr. doesn't have a clue. He gave me Nuvigil which was great for two days. On the third day I crashed totally so that is NOT a proper treatment for CFS. There is a Dr. in the Ft. Worth (found him through the internet) area that specializes in CFS but when I looked at his website and all of 'his' vitamins and supplements that he was pushing I was extremely sceptical. Besides it would cost me days down if I tried to drive that far. I rarely leave the house anymore. It's just too draining. Love my family more than you can imagine but none of them really gets the CFS. God bless them they still think I'm supermom! NOT even close anymore. Thanks to all of you for being there. This is the first time I've posted and it's wonderful to read the postings and know that I'm not alone and there really are other people out there that understand this evil illness. Blessings, Dawn ________________________________ Subject: Re: Cog Fog With everything else CFIDS brings, the loss of my brain was the worst loss. I have learned how to recover and deflect quickly when I am in conversations that I get lost in. I guess my brain has compensated somewhat for what it has lost. I use notebooks and pads all the time. I have to start my day with my chore book and calendar to know what I need to do, if I am able to do anything. Checking off works well. I never even needed to study in college. Just read everything and could almost repeat it. I feel like I have become borderline retarded. This also applys to my activities. Like putting hitting the gas pedal instead of the brake, or putting the milk on the shelf and the cereal in the fridge. The worst was getting out of the shower w/o remembering to rinse off. My biggest loss was my brain. And I try to learn forward, rather than mourn. It really stinks. > > I get no respect for memory problems because ... > > I used to be able to remember the date, time and appointment for months without a calendar. > > I used to be able to check dates for conflicts in my head. Someone would ask me about a particular date and I'd know something was going on, then, just a moment later, I could say what, and what time of day, it was. > > So, when I began using a calendar, ya know, like everybody else, I got no sympathy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2012 Report Share Posted January 19, 2012 I'm with you on the cog fog. It is by far the worst. I used to keep an entire business in my head, raised 6 kids, kept a spotless home, cooked meals, did crafts, sewed a lot of the clothing and quilts and was a body builder. Now it's all gone. I've had to give up both of my part time jobs and my 73 year old hubby is still working. Not being able to make the mind and the mouth work in unison is bad. Not being able to get the mind to work at all is agonizing. I have an above average IQ, am a Type A personality and had never slept more than 4 or 5 hours a night in my life until this hit. Now there are days I don't even get out of bed. I find things done that I don't even remember doing. It doesn't pay to try to keep on pushing through the tired. I can sit and look at something and not be able to figure it out when I've done that task a multitude of time in my life. Spent some time with our oldest and her family at Christmas and it was so draining that there are events and entire days I don't remember. There were pictures on my phone and camera and I have no recollection of taking them or even of who was there. My daughter says 'Oh yeah you met so and so' Even managed to come home sick for two weeks because on top of the CFS I have Leukopenia and catch any germs around. We won't even discuss the chronic shingles. It took me two years and five Dr.s to get even get a diagnosis. Finally was diagnosed at a major teaching hospital here in the metroplex. My Dr. doesn't have a clue. He gave me Nuvigil which was great for two days. On the third day I crashed totally so that is NOT a proper treatment for CFS. There is a Dr. in the Ft. Worth (found him through the internet) area that specializes in CFS but when I looked at his website and all of 'his' vitamins and supplements that he was pushing I was extremely sceptical. Besides it would cost me days down if I tried to drive that far. I rarely leave the house anymore. It's just too draining. Love my family more than you can imagine but none of them really gets the CFS. God bless them they still think I'm supermom! NOT even close anymore. Thanks to all of you for being there. This is the first time I've posted and it's wonderful to read the postings and know that I'm not alone and there really are other people out there that understand this evil illness. Blessings, Dawn ________________________________ Subject: Re: Cog Fog With everything else CFIDS brings, the loss of my brain was the worst loss. I have learned how to recover and deflect quickly when I am in conversations that I get lost in. I guess my brain has compensated somewhat for what it has lost. I use notebooks and pads all the time. I have to start my day with my chore book and calendar to know what I need to do, if I am able to do anything. Checking off works well. I never even needed to study in college. Just read everything and could almost repeat it. I feel like I have become borderline retarded. This also applys to my activities. Like putting hitting the gas pedal instead of the brake, or putting the milk on the shelf and the cereal in the fridge. The worst was getting out of the shower w/o remembering to rinse off. My biggest loss was my brain. And I try to learn forward, rather than mourn. It really stinks. > > I get no respect for memory problems because ... > > I used to be able to remember the date, time and appointment for months without a calendar. > > I used to be able to check dates for conflicts in my head. Someone would ask me about a particular date and I'd know something was going on, then, just a moment later, I could say what, and what time of day, it was. > > So, when I began using a calendar, ya know, like everybody else, I got no sympathy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2012 Report Share Posted January 20, 2012 I, too, was above-average IQ, and an over-acheiver. I lived at least 5 lifetimes in 20 years. I totally relate to all your losses. I think one of the worst is losing the ability to retain a relationship with my children and grandchildren on the level that would even come close to being qualified as a relationship. I know they love me, but are hurt by my inability to function. I think they take it personally. There is no way they can understand. I can't stay focused for onteraction with the children, and can't handle the stimulation that comes with kids. My kids all still think I am still supermom. I hurt for my losses. Good to know there is someone who understands. Hang in there, Dawn. Sounds like you are loved, and that counts for alot. I also talked to a Dr. who turns out was going to be using his company's products. They are opening offices all over the country. Tread carefully. > > I'm with you on the cog fog. It is by far the worst. I used to keep an entire business in my head, raised 6 kids, kept a spotless home, cooked meals, did crafts, sewed a lot of the clothing and quilts and was a body builder. Now it's all gone. I've had to give up both of my part time jobs and my 73 year old hubby is still working. > > Not being able to make the mind and the mouth work in unison is bad. Not being able to get the mind to work at all is agonizing. I have an above average IQ, am a Type A personality and had never slept more than 4 or 5 hours a night in my life until this hit. Now there are days I don't even get out of bed. I find things done that I don't even remember doing. It doesn't pay to try to keep on pushing through the tired. I can sit and look at something and not be able to figure it out when I've done that task a multitude of time in my life. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2012 Report Share Posted January 20, 2012 I, too, was above-average IQ, and an over-acheiver. I lived at least 5 lifetimes in 20 years. I totally relate to all your losses. I think one of the worst is losing the ability to retain a relationship with my children and grandchildren on the level that would even come close to being qualified as a relationship. I know they love me, but are hurt by my inability to function. I think they take it personally. There is no way they can understand. I can't stay focused for onteraction with the children, and can't handle the stimulation that comes with kids. My kids all still think I am still supermom. I hurt for my losses. Good to know there is someone who understands. Hang in there, Dawn. Sounds like you are loved, and that counts for alot. I also talked to a Dr. who turns out was going to be using his company's products. They are opening offices all over the country. Tread carefully. > > I'm with you on the cog fog. It is by far the worst. I used to keep an entire business in my head, raised 6 kids, kept a spotless home, cooked meals, did crafts, sewed a lot of the clothing and quilts and was a body builder. Now it's all gone. I've had to give up both of my part time jobs and my 73 year old hubby is still working. > > Not being able to make the mind and the mouth work in unison is bad. Not being able to get the mind to work at all is agonizing. I have an above average IQ, am a Type A personality and had never slept more than 4 or 5 hours a night in my life until this hit. Now there are days I don't even get out of bed. I find things done that I don't even remember doing. It doesn't pay to try to keep on pushing through the tired. I can sit and look at something and not be able to figure it out when I've done that task a multitude of time in my life. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2012 Report Share Posted January 20, 2012 I, too, was above-average IQ, and an over-acheiver. I lived at least 5 lifetimes in 20 years. I totally relate to all your losses. I think one of the worst is losing the ability to retain a relationship with my children and grandchildren on the level that would even come close to being qualified as a relationship. I know they love me, but are hurt by my inability to function. I think they take it personally. There is no way they can understand. I can't stay focused for onteraction with the children, and can't handle the stimulation that comes with kids. My kids all still think I am still supermom. I hurt for my losses. Good to know there is someone who understands. Hang in there, Dawn. Sounds like you are loved, and that counts for alot. I also talked to a Dr. who turns out was going to be using his company's products. They are opening offices all over the country. Tread carefully. > > I'm with you on the cog fog. It is by far the worst. I used to keep an entire business in my head, raised 6 kids, kept a spotless home, cooked meals, did crafts, sewed a lot of the clothing and quilts and was a body builder. Now it's all gone. I've had to give up both of my part time jobs and my 73 year old hubby is still working. > > Not being able to make the mind and the mouth work in unison is bad. Not being able to get the mind to work at all is agonizing. I have an above average IQ, am a Type A personality and had never slept more than 4 or 5 hours a night in my life until this hit. Now there are days I don't even get out of bed. I find things done that I don't even remember doing. It doesn't pay to try to keep on pushing through the tired. I can sit and look at something and not be able to figure it out when I've done that task a multitude of time in my life. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2012 Report Share Posted January 20, 2012 Sounds like an excellent program. I will look into it. I am still into paper and writing rather than computer. I don't move my phone call notebook for phone information, or my chorebook for ongoing record of tasks. They stay where I use them. My paperwork has its own looseleaf at my desk, also, doesn't get moved. I work thru my chorebook in the morning while I am trying to get my brain to work after trying to get it to not work all night long. I can't imagine not being able to write. Thankfully, you have found a computer program that fits you. Its amazing how much we can survive this illness with new technology!! > > If you are able to use a computer you may like the program called evernote. > I think the URL is www.evernote.com or something like that. > Basically i used to use notepads to but between not being able to hold a pen easily and not being able to write very much (not to do with CFS) and losing the damn notebook all the time someone posted about evernote and i decided to give it a try. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2012 Report Share Posted January 20, 2012 Sounds like an excellent program. I will look into it. I am still into paper and writing rather than computer. I don't move my phone call notebook for phone information, or my chorebook for ongoing record of tasks. They stay where I use them. My paperwork has its own looseleaf at my desk, also, doesn't get moved. I work thru my chorebook in the morning while I am trying to get my brain to work after trying to get it to not work all night long. I can't imagine not being able to write. Thankfully, you have found a computer program that fits you. Its amazing how much we can survive this illness with new technology!! > > If you are able to use a computer you may like the program called evernote. > I think the URL is www.evernote.com or something like that. > Basically i used to use notepads to but between not being able to hold a pen easily and not being able to write very much (not to do with CFS) and losing the damn notebook all the time someone posted about evernote and i decided to give it a try. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2012 Report Share Posted January 20, 2012 Hi-- Oh, LORD do I ever agree here with the loss of what little bit of a mental edge I DID have. Never quite the brightest bulb, I once had a vocabulary. I could write and not have to re-read it to edit the writing in order that, God forbid, I send out/ write out something which was not going to make SENSE because I'd leave things out, sort of. Can't explain exactly (knowing myself, I'll likely demonstrate it right here now <smirk>. I don't mean .. like typos, but sort of leaving out things that put something into proper context...? Ah, hell; I can't explain this even. Oh well. Miserable tonight as it is cold-humid (going to snow) and stuff hurts. to get some Borion stuff need to take the train downtown... I ought to as I am also taking Cipro (a REAL fun drug!)for a bronchial thing. Wicked; there was a horrific cold going around and like as not still is. At least it is warm in here, roof over me head and electricity isn't out, right? Wish I could recall the priceless ten things to do for a Migraine headache which was run in Onion News online back when they were first out; it was pretty good. I can only remember one. something like .. 'Take a ball peen hammer and, with as much force as you can, strike your knee cap.'(I do not recall what number this was on the list of things to do to get rid of the headache but somehow it stayed with me...) Cheers and hope all find some moments of relief, Jane, the one with the hound NYC > > With everything else CFIDS brings, the loss of my brain was the worst loss. I have learned how to recover and deflect quickly when I am in conversations that I get lost in. I guess my brain has compensated somewhat for what it has lost. I use notebooks and pads all the time. I have to start my day with my chore book and calendar to know what I need to do, if I am able to do anything. Checking off works well. I never even needed to study in college. Just read everything and could almost repeat it. I feel like I have become borderline retarded. This also applys to my activities. Like putting hitting the gas pedal instead of the brake, or putting the milk on the shelf and the cereal in the fridge. The worst was getting out of the shower w/o remembering to rinse off. My biggest loss was my brain. And I try to learn forward, rather than mourn. It really stinks. > Quote Link to comment Share on other sites More sharing options...
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