tag:blogger.com,1999:blog-6181780691238814823.post6277459136426063870..comments2023-08-28T23:22:07.966+10:00Comments on Living with Bob (Dysautonomia): Speak words hard: Conversations with Dysautonomia.Michelle Rogerhttp://www.blogger.com/profile/16472120868084570461noreply@blogger.comBlogger10125tag:blogger.com,1999:blog-6181780691238814823.post-67643232705421798132018-08-28T06:37:14.583+10:002018-08-28T06:37:14.583+10:00I'm so glad to have found this blog. I was loo...I'm so glad to have found this blog. I was looking for something to help explain to friends and family why talking on the phone is so hard. Thank you a million. And thanks for 'Bob'. I've used 'Dys'. Eliskahttps://www.blogger.com/profile/01536444925492920202noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-26024979342787387922014-04-01T05:57:00.737+11:002014-04-01T05:57:00.737+11:00Finally someone other than my husband understands ...Finally someone other than my husband understands how difficult and exhausting it is to talk. I have tried to explain it to "normal people " ,but they just look at me as if I was crazy. After all talking takes little or no effort for them. <br />I both look forward and dread family get togethers. The noise is exhausting and trying to communicate in an intelligent manner is almost impossible, and sometimes is impossible. <br />Attending appointments to maintain my benefits from the last car accident I was in are torture. Most of the appointments are an hour and a half to three hours away from home. The car ride there is torture. Most of the appointments start late, probably part of their strategy or test. I feel like a blithering idiot. I may not be able to communicate effectively but I can remember what I said and what was said to me. <br />You have expressed my feelings better than I could have. Thank you. redcathttps://www.blogger.com/profile/15358762839994958875noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-79867323321329692592013-09-27T16:33:57.953+10:002013-09-27T16:33:57.953+10:00Hi Anon. I hate it when I have totally missed the ...Hi Anon. I hate it when I have totally missed the question or topic and give a completely wrong answer, and you can see the other person looking at you with their "do you think she's on meth? look". I notice it's worse, as you say when there's a lot of information, or if I am in a group. Big hugs to you too xxMichelle Rogerhttps://www.blogger.com/profile/16472120868084570461noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-83259309970027175782013-09-27T16:31:54.703+10:002013-09-27T16:31:54.703+10:00Macarons all round Tricia, or baked good of your c...Macarons all round Tricia, or baked good of your choice. Those who don't know us do tend to look perplexed or impatient when we can't talk. Mr Grumpy and the boys get it, as does my best friend, but that's about it. Thank goodness for people who can understand my "thingie" conversations xxMichelle Rogerhttps://www.blogger.com/profile/16472120868084570461noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-29633948617158980182013-09-27T16:29:48.333+10:002013-09-27T16:29:48.333+10:00YES it is dehydrating. I find my mouth gets really...YES it is dehydrating. I find my mouth gets really dry and I need to guzzle water after a conversation. Sitting up does also make it worse. I'm a percher too. And a leaner and yep it looks a bit weird at times, but a girl's, gotta do what a girl's gotta do some days :)Michelle Rogerhttps://www.blogger.com/profile/16472120868084570461noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-896966308488414392013-09-27T16:28:07.891+10:002013-09-27T16:28:07.891+10:00Oh lordy, I'd panic if I had to work in commun...Oh lordy, I'd panic if I had to work in communications, let alone talk in front of the board of directors. Go you, Judy! Thank goodness for writing. No one sees those first drafts thankfully and you can leave it and go back later to fix it up. Happy to do that most days but not the dreaded talking :). <br />PS when I have some free time on the weekend I'll check out your blog. :)Michelle Rogerhttps://www.blogger.com/profile/16472120868084570461noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-5631255142733631592013-09-26T13:04:05.674+10:002013-09-26T13:04:05.674+10:00Once more the internet explains what is happening ...Once more the internet explains what is happening when I am asked a question and my brain can't register and remember what it was to give a proper reply--- so I give a reply which doesn't answer the Question--this happens mostly, when there is too much info being taken in that I have to process before replying .I send you a big hug for today MichelleAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-60218534723315317522013-09-23T04:13:11.135+10:002013-09-23T04:13:11.135+10:00Oh yes, part of the exhaustion is stringing togeth...Oh yes, part of the exhaustion is stringing together the reply in my head, by which time the questioner is looking at me quizically, either concerned if it is Mr Patient, incase I am about to keel over, or impatient if it mostly anyone else, who seems to think the lack of response is me being ignorant! Ho hum, ho hum isn't dysautonomia fun? No it bloody isn't! Wishing a miracle cure for you Michelle, in lieu of that scoff as many macarons as you can fit in xx<br /><br /><br /><br />Anonymoushttps://www.blogger.com/profile/15309828431703333808noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-31136028244316373322013-09-22T01:22:37.509+10:002013-09-22T01:22:37.509+10:00Speaking seems to be dehydrating, as well. Anytim...Speaking seems to be dehydrating, as well. Anytime I need to have a long conversation with someone, I'd better have a huge drink in my hand or I'm not going to make it. Might also be the additional stress of maintaining a socially acceptable posture. If I'm speaking with friends and family, I often "perch" on a hard chair rather than sit up straight. That is, my feet (the front half) are on the chair and I'm sitting on my ankles. Looks decidedly eccentric, but I can keep more blood in my head that way!Amyhttps://www.blogger.com/profile/00068671443994496718noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-62125412966278219172013-09-21T23:54:00.059+10:002013-09-21T23:54:00.059+10:00I couldn't have said it better... literally, I...I couldn't have said it better... literally, I can't form sentences most of the time. However I too can write with much redo of the draft. I have a blog on POTS, Fibro,Chronic Fatigue and life in general and I find that is the only way to truly communicate now. The really bad part is I work full time in Communications, yep .. Im a 911 Director. Thank God it's an office position, and I'm not on the phone with those poor folks in an emergency. The other day I had to speak in front of the Board of Directors and it was a big heaping bowl of word salad..they stared at me like I had a lobster on my head! Love you , love your blog. Please visit my blog at tootiredtolivebutstillbreathing.blogspot.comJudy Tuckerhttps://www.blogger.com/profile/03931317876835036194noreply@blogger.com