tag:blogger.com,1999:blog-6181780691238814823.post5151648155002463987..comments2023-08-28T23:22:07.966+10:00Comments on Living with Bob (Dysautonomia): The Lie of Giving Up and Falling Apart. Michelle Rogerhttp://www.blogger.com/profile/16472120868084570461noreply@blogger.comBlogger9125tag:blogger.com,1999:blog-6181780691238814823.post-55548649230499070782016-04-25T13:07:22.596+10:002016-04-25T13:07:22.596+10:00I just watched the movie 'Cake' with Jenni...I just watched the movie 'Cake' with Jennifer Anniston. Was blown away by the insightful take on living with Chronic Pain. Until the last moment, when she seemed to have an attitude adjustment and suddenly sat up straight - As though, 'Determination' overcame pain. It pissed me off royally. The character had been developing insight in the second half of the movie and this was shown in her more thoughtful actions towards other people. And that should have been enough. But no. In the end she had to 'overcome' in that seemingly mind over matter way. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-72010797153164171072015-11-19T02:24:33.162+11:002015-11-19T02:24:33.162+11:00Relentless stress (known otherwise as life) is bad...Relentless stress (known otherwise as life) is bad for you.<br /><br />It is made worse by people trying to cheer you out of real problems. Of course, then they don't have to help.<br /><br />Do the best you can - consider it a success - and stay away from toxic people (and toxic doctors). Don't let illness take anything it doesn't absolutely have to from you. <br /><br />Good post.<br /><br />AliciaABEhrhardthttps://www.blogger.com/profile/17211038591900883672noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-85540856942852547452015-11-18T19:23:00.555+11:002015-11-18T19:23:00.555+11:00Thank you for writing this.
I collapsed with sudd...Thank you for writing this.<br /><br />I collapsed with sudden onset M.E. I was a professor of history. I could not read my own lecture notes. I could not get complete sentences out of my mouth. When students talked to me, I couldn't understand what they said. It was all terrifying (and, of course, exhausting - I did nothing on the days I didn't have to be lecturing - stayed in bed, but it didn't help).<br /><br />I didn't actually quit teaching - my chair called and said they were all worried about me, and that I was to stay home the next semester and get better. [a shock to all of us that i did not get better ... rather, over the next four years, I got worse.]<br /><br />I can't tell you how many people wrote to me, "I couldn't quit work because I needed the paycheck." That "quitting work" was "giving up." Hello? That's what it means to be disabled. That's what it means to be an invalid. It is not a choice. You CAN'T work.<br /><br />I had to quit driving soon after because I had a blackout and woke up with the car on top of a low stone fence in front of the post office. I couldn't read a comic strip without getting confused. My daughter had to fasten me in the seat belt because I couldn't figure out what it was for. i had intense pain in the back of my neck and behind my eyes 24/7, and I got really bad headaches. I poured an entire pot of coffee into a silverware drawer convinced it was a cup. Over the next four years, despite remaining in bed most of the time, I kept deteriorating. finally I was so sick I couldn't even brush my own teeth, and except for getting up to go to the bathroom (which took a lot of willpower and a lot of time), I was bedridden. None of that was voluntary. How in heck was I supposed to work?<br /><br />Meaning to be kind, people suggested i work from home - teach online. I couldn't do that either. I wasn't any more coherent at home. When I meant to ask my daughter how she was coming on solving a puzzle, I said, "How's the tablecloth coming along?" She said, "tablecloth?" So I said, "How's the map coming along?" Map? It's a puzzle, Mom. [Right category, wrong word.] I put milk in the microwave and cereal in the refrigerator. I tried to stuff a roll of paper towels into the Mr. Coffee machine. How on earth could I have taught from home? It was hard enough work trying to just make it through the day.<br /><br />And I WANTED to work - I LOVED being a historian. I had worked hard to BE a historian. It really hurt when I finally realized I was not going back at all. That my career was over at the age of 44. <br /><br />The people who say to me - "I'd quit work too if I could" - as if I had a choice; or "if you just ate right, you'd be fine" - I think that's a magical mantra they say to keep us at a distance because the thought of ending up like us is terrifying to a generation that really hasn't seen much sickness in working-age people. They wear their yoga outfits and diet like a talisman. It's a superstition, really. Like that stupid fad for saying "If you think happy thoughts you won't die of cancer." It's a way of saying - I'm not you. I'll never be like you. There are things I can do that will keep me from being like you. It is a way to distance yourself from fear.<br /><br />Because I was scary. The thought of being me was very scary. They had to have reasons in their heads that this could never happen to THEM. I must have done something wrong.<br /><br />But these people are getting older, and one day, they're going to get sick. Heaven help them when they do.Mary Schweitzerhttps://www.blogger.com/profile/11583106682242141031noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-15910779050729055202015-09-03T03:13:00.810+10:002015-09-03T03:13:00.810+10:00Thank you for this.Thank you for this.Taglesshttps://www.blogger.com/profile/01334563146612476728noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-75144567011848133032015-09-02T20:24:05.167+10:002015-09-02T20:24:05.167+10:00Thanks for this, it was really helpful to read for...Thanks for this, it was really helpful to read for me at the moment--I have been falling apart a bit lately, and it is made all the harder by getting annoyed at myself for not being tougher, and comparing myself to others who appear to be coping with tough things better than I am. And most people I try to talk to about it just tell me to 'be positive' yadda yadda, or just change the subject, when all I really want is for someone to just listen to me and acknowledge how shitty and hard my situation has been lately (CFS diagnosis and suspected dysautonomia). I don't expect them to solve it. Trying to talk about it is not wallowing in it, which is what some people seem to think--it's just trying to talk about it! The rug has been completely pulled out from under me, I'm facing complete uncertainty about how long I will be sick for, and yet somehow I'm supposed to just remain chirpy about it? Or to not talk about it, because it depresses other people? To me, that seems delusional. If I was going through something else tough, I feel I wouldn't be judged as harshly as I am for finding it somewhat tough to deal with these weird, uncertain invisible illnesses.Ashleehttp://www.bettylovesblogging.comnoreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-64171351227140239922015-09-01T19:08:50.545+10:002015-09-01T19:08:50.545+10:00Thank you. What you write helps so much. Much mo...Thank you. What you write helps so much. Much more than you know. <br /><br />But then again, you *do* know. You really know - what you write proves it. What you are living proves it.<br /><br />Which is why you write what's real, and you aren't full of crap. <br /><br />Everything you said about this meme was right. Also struck me: that part about how everyone else would understand if you fell apart? Oh, no. No they wouldn't. That's exactly what's not allowed. <br /><br />Keep up the facade. Repeat. Repeat. Repeat. <br /><br />I agree, Rachel, "authenticity and gusto." That's exactly what I find here.<br /><br />Thanks again. Twelve years into the hell of incurable illness, and I don't find many places like this one.CiMhttps://www.blogger.com/profile/16432559679442365091noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-74132940115069578382015-09-01T03:06:17.557+10:002015-09-01T03:06:17.557+10:00My grandfather was one of the original health food...My grandfather was one of the original health food nuts starting in the 50s. His particular health food interest was "roughage" or as we call it now, fiber. Always eating the fiber. Ate brown bread, apple cores, oatmeal, bran, all for the fiber. Yet, he died at 74 from colon cancer. The very disease for which his diet and lifestyle is now promoted as the best prevention and cure.<br /><br />You'd think having experienced his death in my teens, I would have grasped early the disconnect between food/lifestyle and disease and that I would never have fallen for the media/medical hype surrounding dietary fixes that developed shortly thereafter. But, nope, I spent the next 30yrs of my life chasing the healthiest diet, the diet that would fix my health problems no one would recognize, the cleanest and most righteous diet that would save my soul (I mean, body). Sandra Keehttps://www.blogger.com/profile/16979912092987681396noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-83686094374497248992015-08-31T14:09:40.347+10:002015-08-31T14:09:40.347+10:00I will always be grateful to you for introducing m...I will always be grateful to you for introducing me to First Aid Kit. What an aptly named group!<br />Yep, shit does get fucked up.<br />You are an excellent human being, who does the good the bad the indifferent with authenticity and gusto. I love your words and I love that you make a space for us to feel okay about the realities. Sometimes, it just sucks.<br />xAnonymoushttps://www.blogger.com/profile/11573990403405303936noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-61983137291448673972015-08-31T13:57:50.708+10:002015-08-31T13:57:50.708+10:00I just made the error of posting a comment on a me...I just made the error of posting a comment on a meme that says "When diet is wrong medicine is of no use. When diet is correct medicine is of no need." I pointed out that a person can eat an organic healthy diet and still get cancer and that I've yet to find any specific food that will force my ANS to work properly. It's almost like shaming someone for getting cancer or some other health malady. We must have done something to deserve this or we could have done something to prevent it. <br /><br />If only life were so simple. If only I could hold it all in and not fall apart. If only I didn't absolutely have to give up sometimes. If only people could get past their own damn fear of their mortality to just be present with others in their struggles. If only...Suzanne Hemondhttps://www.blogger.com/profile/03323103032487137743noreply@blogger.com