Guest guest Posted July 21, 2006 Report Share Posted July 21, 2006 I spent decades on the phone with a mail order business and constant doc contacts. The sicker I got, I started communicating with docs via FAX, that way there was no question of what the issues my kid was facing or the directed treatments. I became very unpopular with one neurologist who I eventually fired. There is a note on the door that say By Appointment Only and the front stoop is a mess, not welcoming. I have a old computer that serves as my phone msg and FAX receiving system. The phone ringers are OFF for about ten years now. Sensory overload is understatement, but I am much improved. I used to be so out of it I could not complete preparation of a simple meal much less clean the house and etc. I could read the words in a book, one by one, but could not put them together and make sense out of their combined message. The little function I had went to making sure my kid was safe, medicated on time and happy. We got him a computer in 1981 to help develop not only fine and gross motor control but also to help integrate parts of his brain. He achieved far more than any of the medical or educational professionals said that he would. All we did was to provide a supportive, safe environment and let him develop as he chose. And, what he chose was quite remarkable. mjh " The Basil Book " _http://foxhillfarm.us/FireBasil/_ (http://foxhillfarm.us/FireBasil/) Great topic, gang. Nice to know I'm not the only crazy hermit ignore- the-phone lady. Sara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2006 Report Share Posted July 21, 2006 On Jul 21, 2006, at 5:30 AM, dphf wrote: > I can identify. I hide when people come to the door, rather than > simply make the contact, say what I have to say and close the > door. Maybe that's a cowards way out, but it works for me. I'd > rather send an email, make orders over the internet than call and > talk to someone on the phone. I prefer drive up windows over > going into buildings. YES! One of the things I did starting in the late 90s was put a message on my answering machine saying: This machine doesn't accept messages. If you want to reach me, send an e-mail. (Not said, but implied: And if you don't have my e-mail address, you're not somebody I want to talk to anyway.) I've gotten a lot of flack about this over the years. People act as if being able to leave messages is some kind of legal right. I get dressed down for it: " I tried to reach you for days, but YOUR MACHINE DOESN'T TAKE MESSAGES " (tsk, tsk, BAD GIRL). I'm sorry -- that machine is there for my convenience, not theirs. I'm not providing it as a public service. I find it hard to chat on the phone for long periods of time. I'll put necessary phone calls off for days if I can -- less necessary ones off for weeks. I will absolutely ignore a ringing phone. Caller ID has been a real boon: these days, with two teenagers in the house, most of the calls aren't even for me to begin with, so this allows me to do triage on which calls I pick up. The phone's ring tone alone just sends me up the wall, though. Both my father and grandmother had this same phone aversion, probably due to their post-polio syndrome. It's been interesting (and annoying) to watch it develop in me. I'm better in public, though. I've always been pretty extroverted, and don't mind malls or theaters. The crowd has to be pretty dense before it really gets to me. In fact, there comes a point where getting me out of the house for a few hours can really help me recover my spirits. They tend to sink when I'm being at home during a long crash. These days, I actually have friends, and I'm trying to train them about this. But e-mail is the ultimate boon. I also do most of my shopping and other communication with the outside world here. I can choose my words, take my time, control what gets read and what goes out to a much greater degree. If I don't have the energy to deal with something right now, it's OK to let it sit in a queue for an hour or a day until the energy gets found. You don't get that kind of control with a phone. The person on the other end of the ringtone doesn't give a damn if you've got the energy to talk to them or not. Great topic, gang. Nice to know I'm not the only crazy hermit ignore- the-phone lady. Sara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2006 Report Share Posted July 21, 2006 Sara I can't tell you the number of times I've nearly been hurt racing to answer the phone. I think there is something about the jangling noise that incites me to move. Long ago, with four small children, 2 of which were chronically ill, I would spend long periods of time on the phone...before the age of the PC, internet and email. It physically hurts me to use the phone, I try to multitask, making it necessary to cradle the phone with my head against my shoulder, to use my hands. The hands free ear bud things are OK but not real user friendly for my situation. You have a great idea about the answering machine. And your description of the advantages of using email are perfect. That's exactly why it's best for me to email. My writing skills have improved immensely, and that in turn has improved my verbal skills, and vocab. What a deal. I am saving many of the discusssions regarding the various pathways and cycles and informative messages regarding the various relationships between one vital biochemical and others. I want to reread them over and over so I can ask smart questions when I see the dr. She loves to teach, has already done such a good job of showing how they approach the complexities of HPA axis disfunction, the cascade following the intitial event etc. All these chemical pathways would be food for her to just take right off into orbit. I'd love to be able to sit a long time and listen to her teach. Maybe someday I'll be energetic enough to be able to drive the 2 hours and work at the clinic...wouldn't that be a trip? That'd make keeping my R.N. license up to date worth it. I've actually toyed with the idea of letting it lapse, but am scared silly to do that, just in case. Diane Re: hermitage <snipped>...But e-mail is the ultimate boon. I also do most of my shopping and other communication with the outside world here. I can choose my words, take my time, control what gets read and what goes out to a much greater degree. If I don't have the energy to deal with something right now, it's OK to let it sit in a queue for an hour or a day until the energy gets found. You don't get that kind of control with a phone. The person on the other end of the ringtone doesn't give a damn if you've got the energy to talk to them or not. Great topic, gang. Nice to know I'm not the only crazy hermit ignore- the-phone lady. Sara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2006 Report Share Posted July 21, 2006 Part of the reason to turn off the phone ringers was that I was so sensitive that the ring of the phone was a physical assault on my body and I could sense the pain from the sound waves over a foot before they reached my body. So, if I could feel the pain and then experience the increased debility from sound waves.... what else was impacting me that I was not sensitive enough to perceive? Just because I cannot see it, feel it, hear it, smell it or taste it, does not mean it does not exist. In a message dated 7/21/2006 1:44:13 PM Eastern Daylight Time, Foxhillers writes: The phone ringers are OFF for about ten years now. mjh " The Basil Book " http://foxhillfarm.us/FireBasil/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2006 Report Share Posted July 21, 2006 Diane in MI Thank you for your kind words.... we are all in this situation together. mjh " The Basil Book " http://foxhillfarm.us/FireBasil/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2006 Report Share Posted July 21, 2006 Decades ago, I ordered a phone tech to adjust my phone ringers (the box of gizmos at the floor molding) to make them all be able to be adjusted to ZERO, no sound. Yes, there's a " rattle " sound but no ringing when a call comes through. As soon as the guy left that day, I ran around and did set them all to zero, no sound. All phones themselves are set on the lowest volume control. No sounds of phones at all, other than a " rattle " in the molding of the floor. I had thought that my predilection was due to being raised in a family of phone company people and then marrying into another one...but maybe not? No kids in the house anymore, so all I have to worry about is me. in Champaign IL >[...]The phone's ring tone alone just sends me up the wall, though. Both my father and grandmother had this same phone aversion, probably due to their post-polio syndrome. It's been interesting (and annoying) to watch it develop in me. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2006 Report Share Posted July 21, 2006 Interesting. Thanks, mjh. The last doctor I had I communicated with by fax. There's a note covering my doorbell that says Do Not Ring. Yesterday I had to drive to the post office. On the way home, a truck was in the left lane and it passed me once, then dropped back behind and then passed me again. Each time this truck went by my left ear, my face grimaced in response to the sound or pitch of the noise, and my head automatically crooked to the left to cover my ear. It was distinct and noticeable and automatic and uncontrollable. Your description of reading is me trying to do work as an editor. On good days it's slightly better. This is not a good day. in Champaign IL > > I spent decades on the phone with a mail order business and constant doc > contacts. The sicker I got, I started communicating with docs via FAX, that way > there was no question of what the issues my kid was facing or the directed > treatments. I became very unpopular with one neurologist who I eventually > fired. > > There is a note on the door that say By Appointment Only and the front > stoop is a mess, not welcoming. I have a old computer that serves as my phone > msg and FAX receiving system. The phone ringers are OFF for about ten years > now. > > Sensory overload is understatement, but I am much improved. > > I used to be so out of it I could not complete preparation of a simple meal > much less clean the house and etc. I could read the words in a book, one by > one, but could not put them together and make sense out of their combined > message. The little function I had went to making sure my kid was safe, > medicated on time and happy. > >[]...] > mjh > " The Basil Book " > _http://foxhillfarm.us/FireBasil/_ (http://foxhillfarm.us/FireBasil/) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2006 Report Share Posted July 21, 2006 MJH Your little tidbits about your son are so interesting. It sounds to me like he led a very difficult life, but in another sense very fulfilling and rewarding, to have such support and make such accomplishments. It sounds like you invested a lot into making that happen. I hope you have a great sense of having done a very good thing as you remember him. As for your functioning, as with many with physical difficulites to overcome, from somewhere there comes amazing abilities to compensate, and utilize strengths from other areas to accomplish what would seem to be impossible things. For all the hardships, you have accumulated a wealth of information and what seems to me to be a sharp mind, regardless of it's minute by minute function. I'm glad you choose to share what you know. Thanks. Diane Re: hermitage I spent decades on the phone with a mail order business and constant doc contacts. The sicker I got, I started communicating with docs via FAX, that way there was no question of what the issues my kid was facing or the directed treatments. I became very unpopular with one neurologist who I eventually fired. There is a note on the door that say By Appointment Only and the front stoop is a mess, not welcoming. I have a old computer that serves as my phone msg and FAX receiving system. The phone ringers are OFF for about ten years now. Sensory overload is understatement, but I am much improved. I used to be so out of it I could not complete preparation of a simple meal much less clean the house and etc. I could read the words in a book, one by one, but could not put them together and make sense out of their combined message. The little function I had went to making sure my kid was safe, medicated on time and happy. We got him a computer in 1981 to help develop not only fine and gross motor control but also to help integrate parts of his brain. He achieved far more than any of the medical or educational professionals said that he would. All we did was to provide a supportive, safe environment and let him develop as he chose. And, what he chose was quite remarkable. mjh " The Basil Book " _http://foxhillfarm.us/FireBasil/_ (http://foxhillfarm.us/FireBasil/) Great topic, gang. Nice to know I'm not the only crazy hermit ignore- the-phone lady. Sara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2006 Report Share Posted July 21, 2006 Hi mjh, dphf, Diane, Sara, I too can identify with needing to be a hermit much of the time. Trying to carry on a conversation can be just too exhausting and can cause post-exertional malaise, even though the exhaustion is cognitive. Vickie in Houston > > I can identify. I hide when people come to the door, rather than simply make the contact, say what I have to say and close the door. Maybe that's a cowards way out, but it works for me. I'd rather send an email, make orders over the internet than call and talk to someone on the phone. I prefer drive up windows over going into buildings. > > As for explaining to someone else, I do little in that arena unless they ask specific questions that allow discussion on the topic. Few do. Except those that already have experience in the topic because they have CFS/ FM. I find the association with autism intriguing though and am beginning to describe the similarities to family. It sure makes sense to me the previous posts about compensatory actions, relationships to objects over people. > Diane > > Re: Symptoms of Autism which may be relevant to CFS/ME > > I've changed professions.... instead of being actively and productively > engaged in the outside world, I am now a full time recluse. Or, is it hermit? > > mjh > " The Basil Book " > _http://foxhillfarm.us/FireBasil/_ (http://foxhillfarm.us/FireBasil/) > > sunscaper53 _ (sunscaper53) > Thu Jul 20, 2006 7:40 pm (PST) > Yea, don't you just crave some solitude, to rest the weary brain drain!!!! > (Those normals think we are just depressed, lazy, or trying to escape > reality, whereas we are a tribute to the human will to survive, despite all > this...) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2006 Report Share Posted July 21, 2006 Same here, but I am coming out of it. But have felt so bad about my myriad weirdnesses. Am so glad for the validation, even belated. Adrienne Re: hermitage On Jul 21, 2006, at 5:30 AM, dphf wrote: > I can identify. I hide when people come to the door, rather than > simply make the contact, say what I have to say and close the > door. Maybe that's a cowards way out, but it works for me. I'd > rather send an email, make orders over the internet than call and > talk to someone on the phone. I prefer drive up windows over > going into buildings. YES! One of the things I did starting in the late 90s was put a message on my answering machine saying: This machine doesn't accept messages. If you want to reach me, send an e-mail. (Not said, but implied: And if you don't have my e-mail address, you're not somebody I want to talk to anyway.) I've gotten a lot of flack about this over the years. People act as if being able to leave messages is some kind of legal right. I get dressed down for it: " I tried to reach you for days, but YOUR MACHINE DOESN'T TAKE MESSAGES " (tsk, tsk, BAD GIRL). I'm sorry -- that machine is there for my convenience, not theirs. I'm not providing it as a public service. I find it hard to chat on the phone for long periods of time. I'll put necessary phone calls off for days if I can -- less necessary ones off for weeks. I will absolutely ignore a ringing phone. Caller ID has been a real boon: these days, with two teenagers in the house, most of the calls aren't even for me to begin with, so this allows me to do triage on which calls I pick up. The phone's ring tone alone just sends me up the wall, though. Both my father and grandmother had this same phone aversion, probably due to their post-polio syndrome. It's been interesting (and annoying) to watch it develop in me. I'm better in public, though. I've always been pretty extroverted, and don't mind malls or theaters. The crowd has to be pretty dense before it really gets to me. In fact, there comes a point where getting me out of the house for a few hours can really help me recover my spirits. They tend to sink when I'm being at home during a long crash. These days, I actually have friends, and I'm trying to train them about this. But e-mail is the ultimate boon. I also do most of my shopping and other communication with the outside world here. I can choose my words, take my time, control what gets read and what goes out to a much greater degree. If I don't have the energy to deal with something right now, it's OK to let it sit in a queue for an hour or a day until the energy gets found. You don't get that kind of control with a phone. The person on the other end of the ringtone doesn't give a damn if you've got the energy to talk to them or not. Great topic, gang. Nice to know I'm not the only crazy hermit ignore- the-phone lady. Sara This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2006 Report Share Posted July 21, 2006 You know, I guess I've felt so badly I didn't even care if I appeared " abnormal " or not. Maybe I've moved into a self preservation mode, and that excludes all but the most basic functions to survive, from where I feel I am slowly emerging. I sense another verbal war erupting, I'll go crawl back under my rock now. It's been nice visiting and getting to know some of you better. I'll be back after the shrapnel lands. Diane Re: hermitage On Jul 21, 2006, at 5:30 AM, dphf wrote: > I can identify. I hide when people come to the door, rather than > simply make the contact, say what I have to say and close the > door. Maybe that's a cowards way out, but it works for me. I'd > rather send an email, make orders over the internet than call and > talk to someone on the phone. I prefer drive up windows over > going into buildings. YES! One of the things I did starting in the late 90s was put a message on my answering machine saying: This machine doesn't accept messages. If you want to reach me, send an e-mail. (Not said, but implied: And if you don't have my e-mail address, you're not somebody I want to talk to anyway.) I've gotten a lot of flack about this over the years. People act as if being able to leave messages is some kind of legal right. I get dressed down for it: " I tried to reach you for days, but YOUR MACHINE DOESN'T TAKE MESSAGES " (tsk, tsk, BAD GIRL). I'm sorry -- that machine is there for my convenience, not theirs. I'm not providing it as a public service. I find it hard to chat on the phone for long periods of time. I'll put necessary phone calls off for days if I can -- less necessary ones off for weeks. I will absolutely ignore a ringing phone. Caller ID has been a real boon: these days, with two teenagers in the house, most of the calls aren't even for me to begin with, so this allows me to do triage on which calls I pick up. The phone's ring tone alone just sends me up the wall, though. Both my father and grandmother had this same phone aversion, probably due to their post-polio syndrome. It's been interesting (and annoying) to watch it develop in me. I'm better in public, though. I've always been pretty extroverted, and don't mind malls or theaters. The crowd has to be pretty dense before it really gets to me. In fact, there comes a point where getting me out of the house for a few hours can really help me recover my spirits. They tend to sink when I'm being at home during a long crash. These days, I actually have friends, and I'm trying to train them about this. But e-mail is the ultimate boon. I also do most of my shopping and other communication with the outside world here. I can choose my words, take my time, control what gets read and what goes out to a much greater degree. If I don't have the energy to deal with something right now, it's OK to let it sit in a queue for an hour or a day until the energy gets found. You don't get that kind of control with a phone. The person on the other end of the ringtone doesn't give a damn if you've got the energy to talk to them or not. Great topic, gang. Nice to know I'm not the only crazy hermit ignore- the-phone lady. Sara This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2006 Report Share Posted July 21, 2006 I used to love dinner parties, getting together with friends, talking on the phone. But it's exhausting and now I dread the sound of the phone ringing. And everyone I know knows way better than to just drop in. I call myself a recluse very often. It's all I can do to survive let alone socialize. dphf <dphf@...> wrote: You know, I guess I've felt so badly I didn't even care if I appeared " abnormal " or not. Maybe I've moved into a self preservation mode, and that excludes all but the most basic functions to survive, from where I feel I am slowly emerging. I sense another verbal war erupting, I'll go crawl back under my rock now. It's been nice visiting and getting to know some of you better. I'll be back after the shrapnel lands. Diane Re: hermitage On Jul 21, 2006, at 5:30 AM, dphf wrote: > I can identify. I hide when people come to the door, rather than > simply make the contact, say what I have to say and close the > door. Maybe that's a cowards way out, but it works for me. I'd > rather send an email, make orders over the internet than call and > talk to someone on the phone. I prefer drive up windows over > going into buildings. YES! One of the things I did starting in the late 90s was put a message on my answering machine saying: This machine doesn't accept messages. If you want to reach me, send an e-mail. (Not said, but implied: And if you don't have my e-mail address, you're not somebody I want to talk to anyway.) I've gotten a lot of flack about this over the years. People act as if being able to leave messages is some kind of legal right. I get dressed down for it: " I tried to reach you for days, but YOUR MACHINE DOESN'T TAKE MESSAGES " (tsk, tsk, BAD GIRL). I'm sorry -- that machine is there for my convenience, not theirs. I'm not providing it as a public service. I find it hard to chat on the phone for long periods of time. I'll put necessary phone calls off for days if I can -- less necessary ones off for weeks. I will absolutely ignore a ringing phone. Caller ID has been a real boon: these days, with two teenagers in the house, most of the calls aren't even for me to begin with, so this allows me to do triage on which calls I pick up. The phone's ring tone alone just sends me up the wall, though. Both my father and grandmother had this same phone aversion, probably due to their post-polio syndrome. It's been interesting (and annoying) to watch it develop in me. I'm better in public, though. I've always been pretty extroverted, and don't mind malls or theaters. The crowd has to be pretty dense before it really gets to me. In fact, there comes a point where getting me out of the house for a few hours can really help me recover my spirits. They tend to sink when I'm being at home during a long crash. These days, I actually have friends, and I'm trying to train them about this. But e-mail is the ultimate boon. I also do most of my shopping and other communication with the outside world here. I can choose my words, take my time, control what gets read and what goes out to a much greater degree. If I don't have the energy to deal with something right now, it's OK to let it sit in a queue for an hour or a day until the energy gets found. You don't get that kind of control with a phone. The person on the other end of the ringtone doesn't give a damn if you've got the energy to talk to them or not. Great topic, gang. Nice to know I'm not the only crazy hermit ignore- the-phone lady. Sara This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. Quote Link to comment Share on other sites More sharing options...
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