I had my Annie 21 years ago. I was blind and paralyzed, but have recoved very well. I am currently remain on disability. I have regained movement in my legs thanks to rehab, and my eyesight returned un expectedly, before I left the hospital! It was a miracle. Today, my visual field numbers are so bad that my doctor reported to the state as legally blind.
My real problem though is with paranoia. I’m driving my family CRAZY!!! It’s gotten worse over the years. My daughter and I fight on a regular basis because if it. My husband, well, he’s just learned to live with it.
Has anyone else experienced this? I had my Annie at age 34, I’m going on 55 now. I’m told I am paranoid by my entire family! It makes me so sad and I’m beginning to not want to be around anyone.
Thank you for the kind words (: It’s just my daughter. She’s 26 and lives with my husband and I with my grandson. I’ve accused her of a few things and she gets irate when I do it. I get a good cursing out behind it. She says she’s tired of being accused and tired of my paranoia. My husband kind of just blows it off. But I can tell he’s getting just as frustrated as my daughter ): he and I have had a spat or two as well ): I’m just wondering when he’ll get tired enough to throw give up on me. The rest of my family has (heavy sigh.) When I feel like the paranoia is creeping up, I try real, real hard to re-direct my thought process, to no avail ): Just fighting a losing battle. My doctor’s even say I’m a non-compliant patient. But I get no help with medication or anything else at home. I worked 20+ years as an Administrative Assistant in the corporate/not-for-profit organizations, only to end up on disability for the last 20+ years now trying my hardest not to be paranoid and get along with my family and try my hardest to get somebody around here to at least talk to me!! I realize I can’t be who I was and who I am at the same time!! I was re-born again the day I had my Annie. But who am I? Who is my family? What can I do anymore?? I have a whole new birthday all over again! A whole new set of personality traits. New goals, new habits, new hobbies, new brain!! I’m sure everyone here can relate to what I’m experiencing. My family just puts up with me and they’re frustrated! I’m frustrated, the doctors are frustrated. I’ve tried to commit suicide twice, but I’m still here. . .I’m a survivor they say. I’m paranoid my family says (heavy sigh). Just trying to make some since out of my destiny. ):
ahcila - I concur with Edwardo on most points, but then I usually do:). Find a licensed therapist. Clergy can be helpful but should steer you to someone who has gone to the trouble to learn about personality disorders. Find someone who has brain trauma experience, it’s very similar to a rupture but not quite.
When you say paranoia do you mean:
1
: a psychosis characterized by systematized delusions of persecution or grandeur usually without hallucinations
2
: a tendency on the part of an individual or group toward excessive or irrational suspiciousness and distrustfulness of others
Just being a grandparent helping to raise a grandson can be overwhelming. If your daughter is doing things that don’t fit you and your husband’s morals or ethics, you both need to discuss it with her. Don’t always be the bad guy here. Parenting is always a team sport. If your paranoia is really bothersome, again I suggest a good therapist perhaps with CBT certification as they can help you with what you have already started - learning skill sets to overcome what you don’t like about yourself.
Ohh Ahcila, I too agree with both Edwardo and Moltroub, find a therapist you are comfortable with. This can be a difficult challenge but you need to find someone you can 'click' with. Preferably someone with some knowledge around Annie's. I once saw a councellor, she was very nice, but had no clue nor understanding of my situation. I needed to talk, I needed to get it out of me. Keeping it built up in me was going to kill me, and I knew it. I eventually found a psych who I clicked with. Phew, what a release.
I have found that for me I need to keep my mind occupied in SOMETHING, it doesn't matter what but it seems if my mind can wander I go some awful places, so I keep myself busy. I know I make that sound easy but it isn't. I give myself tasks to complete, something I can complete. If I'm unwell its a smaller task, but I need something to aim for, something to achieve. This prevents me from 'crawling inside my black hole' as I'm occupied and not constantly thinking of everything else, all at once. I mix my tasks up so its not the same things over and over each week. I have a mix of simple and complex tasks, something to meet my needs for the day.
For me its a fine balancing act between being occupied too much and paying in pain the following day if I over do it. But I think these things, these new limits we all have to learn again. We are not the same as we were, things have changed and that takes a HUGE amount of adjustment from EVERYBODY, and that ain't easy. Maybe that's what your family needs to hear, you are trying. They can see the result from Annie, but they can't see your personal internal battle with those results. Maybe they need to. The more knowledge they have, the clearer their own understanding.
I have asked my doctors for help, to no avail. I’m in the process of changing my entire health provider entourage. Sometimes I do feel that because my circumstances with my Annie happened quite some time ago, my docs feel that maybe my symptoms are “old news” to them and I should be much, much better and have overcome my issues by now.
Thanks again for your input!
Merl said:
Ohh Ahcila, I too agree with both Edwardo and Moltroub, find a therapist you are comfortable with. This can be a difficult challenge but you need to find someone you can ‘click’ with. Preferably someone with some knowledge around Annie’s. I once saw a councellor, she was very nice, but had no clue nor understanding of my situation. I needed to talk, I needed to get it out of me. Keeping it built up in me was going to kill me, and I knew it. I eventually found a psych who I clicked with. Phew, what a release.
I have found that for me I need to keep my mind occupied in SOMETHING, it doesn’t matter what but it seems if my mind can wander I go some awful places, so I keep myself busy. I know I make that sound easy but it isn’t. I give myself tasks to complete, something I can complete. If I’m unwell its a smaller task, but I need something to aim for, something to achieve. This prevents me from ‘crawling inside my black hole’ as I’m occupied and not constantly thinking of everything else, all at once. I mix my tasks up so its not the same things over and over each week. I have a mix of simple and complex tasks, something to meet my needs for the day.
For me its a fine balancing act between being occupied too much and paying in pain the following day if I over do it. But I think these things, these new limits we all have to learn again. We are not the same as we were, things have changed and that takes a HUGE amount of adjustment from EVERYBODY, and that ain’t easy. Maybe that’s what your family needs to hear, you are trying. They can see the result from Annie, but they can’t see your personal internal battle with those results. Maybe they need to. The more knowledge they have, the clearer their own understanding.
ahcila - I concur with Edwardo on most points, but then I usually do:). Find a licensed therapist. Clergy can be helpful but should steer you to someone who has gone to the trouble to learn about personality disorders. Find someone who has brain trauma experience, it’s very similar to a rupture but not quite.
When you say paranoia do you mean:
1
: a psychosis characterized by systematized delusions of persecution or grandeur usually without hallucinations
2
: a tendency on the part of an individual or group toward excessive or irrational suspiciousness and distrustfulness of others
Just being a grandparent helping to raise a grandson can be overwhelming. If your daughter is doing things that don’t fit you and your husband’s morals or ethics, you both need to discuss it with her. Don’t always be the bad guy here. Parenting is always a team sport. If your paranoia is really bothersome, again I suggest a good therapist perhaps with CBT certification as they can help you with what you have already started - learning skill sets to overcome what you don’t like about yourself.
Don't you just love them 'know-it-all' dr's. If they knew it all we wouldn't be in this situation, but rather than admit they DON'T know, they put it back on us. And they wonder why I question them about their own actions. Hmmm, they don't seem to like that. So, like you, I changed all my medical physicians. Found people who would listen and investigate and not just write me off as 'Unstable' grrrrrr
I'm in a similar position in that they have operated, they have fixed it, but if this is fixed then I'm............another word starting with 'F'. I was asked if I was going to sue, like WTF, if they didn't operate I'd be dead, plain and simple. I'm not looking for $$$, I'm looking for answers, other ways to manage. They think 'overcome', I've tried that 'overcome' bit. There is no such thing, I'm never going to overcome this, I've tried. This is as good as it gets, so now I have to manage the best way I can, for me.
Merl, you’re my kind of fighter!!! Don’t get me wrong, I do give the Doctor’s 100% of the praise, but most of them are so damn errogant that they feel like they have the degree and ALL the knowledge, we don’t know a damn thing!! The truth is they really don’t want us to know that we’re actually their “ginny pigs” through all of this. They’re learning as they go just like we are, but they don’t want to admit it! I mean how would that make them look? I believe Dr.s are always compiling data on an on-going basis and as things change, new developments, new procedures, new technology, more funding becomes available to them, then they’re able to provide better diagnosis, better relationships with their patients. But I think they’ll never admit this. They’ll always want us/their patients to trust them, not question their ability to make, and keep us well! How else would they make their $$$$. They need to realize, and not be so selfish with their knowledge, and understand, that we are all in this together. We all want healing, cures, good health! The downfall to that is that with partnership, over knowledge, one loses control. . .thus, the reason why some. . feel the need to NOT collaborate with others for a worthy cause, whether it be for the betterment of the majority or for a cure or for healthier happier Annie survivors. Clinical trials are a perfect example. I do feel that the patient is a “valuable asset” to the doctor. Much more than they are willing to admit. Without us, there would be no them! If we were all well, how would they make their $$$$$!!! Hmmmmm? Patients are more powerful than they think. Especially with the World Wide Web!
Merl said:
Ahcila,
Don't you just love them 'know-it-all' dr's. If they knew it all we wouldn't be in this situation, but rather than admit they DON'T know, they put it back on us. And they wonder why I question them about their own actions. Hmmm, they don't seem to like that. So, like you, I changed all my medical physicians. Found people who would listen and investigate and not just write me off as 'Unstable' grrrrrr
I'm in a similar position in that they have operated, they have fixed it, but if this is fixed then I'm............another word starting with 'F'. I was asked if I was going to sue, like WTF, if they didn't operate I'd be dead, plain and simple. I'm not looking for $$$, I'm looking for answers, other ways to manage. They think 'overcome', I've tried that 'overcome' bit. There is no such thing, I'm never going to overcome this, I've tried. This is as good as it gets, so now I have to manage the best way I can, for me.
I TOTALLY AGREE!!! We are 'ginny' pigs. It's all about the sacred $$$$. They don't perform medicine, they practise medicine, its all trial and error. I've lost track of the number of different treatments I have trialled "Ohh so that treatment didn't work, here try this instead..." But some of these so called specialists make out they have all the answers and how dare we question them. And as for the internet, they hate it. I have armed myself with information, gone to appointments and asked some questions. Questions I obviously am not supposed to know about. The reaction was instantaneous and negative. Like "how do you know about that? We are the dr's we have done years of study. We know more than you ever will". I know pain, but that doesn't count. Seems its all in my head, as if I didn't know that already lol but they mean psychological, like I am imagining all this. It would be great if I was cos then I'd just imagine it all away. When they don't have an answer then the problem isn't them, the problem is me. So they put me in the 'Too Hard Basket' which just makes me a basket case ( as if I wasn't already lol ). I have to make light of it because if I don't I can wind myself into such a mess, it isn't pleasant for anyone.
This is why I say to people " If you've got a decent dr, who will listen, who will investigate, then grab a hold and don't let go. They are hard to come by."
I agree! Spiritual medicine along with the worldly docs work for me (: I put a lot of my healing power into my creator, along with the doctors, I mean we were created by a superior higher creator, who knows ALL!
I trust and believe that. So when all worldly cares of the world issues fail me, I can always count on my creator. I’m never ever let down.
Merl said:
Hey Ahcila,
I TOTALLY AGREE!!! We are ‘ginny’ pigs. It’s all about the sacred $$$$. They don’t perform medicine, they practise medicine, its all trial and error. I’ve lost track of the number of different treatments I have trialled “Ohh so that treatment didn’t work, here try this instead…” But some of these so called specialists make out they have all the answers and how dare we question them. And as for the internet, they hate it. I have armed myself with information, gone to appointments and asked some questions. Questions I obviously am not supposed to know about. The reaction was instantaneous and negative. Like “how do you know about that? We are the dr’s we have done years of study. We know more than you ever will”. I know pain, but that doesn’t count. Seems its all in my head, as if I didn’t know that already lol but they mean psychological, like I am imagining all this. It would be great if I was cos then I’d just imagine it all away. When they don’t have an answer then the problem isn’t them, the problem is me. So they put me in the ‘Too Hard Basket’ which just makes me a basket case ( as if I wasn’t already lol ). I have to make light of it because if I don’t I can wind myself into such a mess, it isn’t pleasant for anyone.
This is why I say to people " If you’ve got a decent dr, who will listen, who will investigate, then grab a hold and don’t let go. They are hard to come by."
I'm not what you'd EVER call a spiritual man. I believe in meditation and that sort of thing but to be calling it spiritual would be a stretch lol
I just try to go with the flow now. Get the information then investigate for myself. I keep myself well informed, so I'm not just relying on that one a single source (Being the dr's). I flow the advice given by the dr's. I may not agree with it but if I don't follow it I get labelled a 'non compliant patient'. And that can follow you everywhere. Dr management can be soul destroying for the patients. They have way too much power imo.
Mind, body and spirit! Each of us has the will power to heal our own bodies. I,ve learned when the word “spirit” is mentioned, everybody runs. I’m merely talking about our own ability to know our own bodies! Sort of like bio feedback. I’ve learned that we do not stay in touch with our bodies enough. We just don’t listen to our bodies! We’re just to darn busy. Our bodies were made to give us signals, warnings, hints. We are literally robots. We just ignore the signals until it’s too late! Kinda like a car. We break down, then we call the docs!
If we learn to keep our minds, bodies and our spirits in-line, and in sync, we would be in better health! Mind, body and spirit, sorta like taking yoga! We have the power to heal! I wasn’t a fan of this phrase at first, until I had my Annie. The brain is a mighty power tool!it’s like a computer, the sooner we learn how to utilize it to the max, the better off we’ll be. So when you hear spiritual, think, “I was created. . .” People take that word out of context to me. That’s just my opinion. Hope I haven’t offended you here. I truly enjoy the discussions here. I hope I’ve help you in some way (:
Merl said:
I’m not what you’d EVER call a spiritual man. I believe in meditation and that sort of thing but to be calling it spiritual would be a stretch lol
I just try to go with the flow now. Get the information then investigate for myself. I keep myself well informed, so I’m not just relying on that one a single source (Being the dr’s). I flow the advice given by the dr’s. I may not agree with it but if I don’t follow it I get labelled a ‘non compliant patient’. And that can follow you everywhere. Dr management can be soul destroying for the patients. They have way too much power imo.
" I hope I've help you in some way (: " Sorry Ahcila, I'm beyond help lol So I'm not at all offended. I certainly agree with the idea that our bodies have their own warning systems that we often misinterpreted or ignore. But to be honest if my wife jumped everytime she saw me in pain, we'd have to move in to the hospital as residents lol so I think we need to assess each situation individually. I find this really difficult to explain to people including my wife. And I think you are correct if we could only learn to utilize the full potential of our brain for our own benefit
Ahcila, I would encourage you to be more proactive with any medical team you have. Go in with a list of concerns and questions. I don’t mind challenging any medical professional. And I must be lucky because the ones treating me are honest to a fault.
Medical people aren’t like they were in the 60’s and 70’s. Everyone I’ve met since the 80’s expect patients to be active in their care. I finish every appointment with clarification of what I can do on a daily basis to help me. It’s okay to respectfully confront your doctors.
I would again encourage a therapist with traumatic brain injury experience or neuro experience (certified) and utilizes Cognitive Behavioral Therapy. With any trauma, we get into psychological and behavioral ruts. A good therapist will teach skills to help us identify our negative behaviors and thinking. Skill teaching is more in the realm of CBT but good talk therapists can do it as well. Even with a good therapist always go in with a plan of what you want accomplish, just like with medical professionals. Make short term goals and long term goals.
Ahcila, I would encourage you to be more proactive with any medical team you have. Go in with a list of concerns and questions. I don't mind challenging any medical professional. And I must be lucky because the ones treating me are honest to a fault.
Medical people aren't like they were in the 60's and 70's. Everyone I've met since the 80's expect patients to be active in their care. I finish every appointment with clarification of what I can do on a daily basis to help me. It's okay to respectfully confront your doctors.
I would again encourage a therapist with traumatic brain injury experience or neuro experience (certified) and utilizes Cognitive Behavioral Therapy. With any trauma, we get into psychological and behavioral ruts. A good therapist will teach skills to help us identify our negative behaviors and thinking. Skill teaching is more in the realm of CBT but good talk therapists can do it as well. Even with a good therapist always go in with a plan of what you want accomplish, just like with medical professionals. Make short term goals and long term goals.