tag:blogger.com,1999:blog-22576999.post2832672654567290765..comments2024-03-27T14:05:22.815-04:00Comments on Live With ME/CFS: Why Don't I Look As Bad As I Feel?Sue Jacksonhttp://www.blogger.com/profile/14532098225905355332noreply@blogger.comBlogger18125tag:blogger.com,1999:blog-22576999.post-62473894020659792842010-04-20T15:55:16.856-04:002010-04-20T15:55:16.856-04:00I agree with you, David! Science fiction can be p...I agree with you, David! Science fiction can be pretty uplifting that way. Cheers to no more blood work!<br /><br />D.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-48141735975782584962010-04-19T17:23:53.422-04:002010-04-19T17:23:53.422-04:00That would be a great title for a book on CFIDS! ...That would be a great title for a book on CFIDS! "Why don't I look sick!" That one statement says so much!<br /><br />I hope you are feeling better soon.<br /><br />Sorry I am so behind but I crashed for 3/4 days after my Tea Party last week. :-)Dominiquehttp://www.4wallsandaview.com/noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-89112647736914598792010-04-16T16:12:12.067-04:002010-04-16T16:12:12.067-04:00I'm loving all this Star Trek talk! LOL!
Funn...I'm loving all this Star Trek talk! LOL!<br /><br />Funny enough, whenever I get bummed about being sick I always think of Star Trek and the amazing technology. They can scan your body (no giving blood!) with a tricorder and tell almost everything instantly. Our own future may very well be like that. Seriously, just think of the changes in technology in the past 30 years. Now imagine 30 years from now. CFS/ME will be cured long before then, I'm confident! Now it's just about accelerating the rate of progress/discovery...<br /><br />David (formerly anonymous David)Davidhttps://www.blogger.com/profile/10778342601996392913noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-78448126653180202452010-04-16T15:49:45.445-04:002010-04-16T15:49:45.445-04:00Craziest episode ever last night... Data starts ha...Craziest episode ever last night... Data starts having strange nightmares about the crew while the new warp engines refuse to function. The writers were having fun with that episode, I'm certain...<br /><br />D.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-24006127649034489182010-04-16T15:14:53.402-04:002010-04-16T15:14:53.402-04:00PJ -
Ha ha ha - don't worry - we all live in ...PJ - <br />Ha ha ha - don't worry - we all live in a brain fog world...and I don't mind if you comment twice!<br /><br />D -<br />I love Star Trek TNG! Great show - I watch old reruns with my 15-yo son when he's home sick.<br /><br />Laurel -<br />So glad you enjoyed The Help, too!<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-60360736632500142502010-04-16T15:09:29.521-04:002010-04-16T15:09:29.521-04:00Hope you're feeling better soon, Sue. I know w...Hope you're feeling better soon, Sue. I know what you mean about not looking as sick as you feel. I recently came across some photos of me from a year or so ago when my brother and his family were here, and I was having one of the worst CFS crashes I'd ever had that week. I could barely move. And yet, in the photo, I look just as perky and healthy as anyone else, excluding the fact that I was in bed. :) It made me realize how hard it must be for others to understand when it's so invisible.<br /><br />I read (or listened to) the audio version of The Help. Excellent!Laurelhttps://www.blogger.com/profile/01688914443102913569noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-68412495498458390762010-04-16T13:02:28.165-04:002010-04-16T13:02:28.165-04:00Hi Sue I hope you don't mind me popping by but...Hi Sue I hope you don't mind me popping by but Rachel from blue mug recommended I drop by.My daughter of just 16 has been ill on and off for what seems like forever but over last 2 yrs has become worse.No energy to walk round school some days,it was interesting to read about not looking the way you feel,I know what you mean!She had bloods taken this week and they are fine,she has lost lots of weight over the year and gets bad throats and has terrible memory and concentration,Doctor just said come back in a month.Great!!!Phoned a nutritionalist to have allergy tests to rule things out,just not sure what to do next!Will have a good read of your blog,love & light to you and your family Beckyxincahttps://www.blogger.com/profile/00422744383344397117noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-81330705813539830962010-04-16T12:29:36.820-04:002010-04-16T12:29:36.820-04:00I've been watching a lot of Star Trek TNG late...I've been watching a lot of Star Trek TNG lately... haha...<br /><br />"Run a level 3 diagnostic on the warp engines!"<br /><br />D.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-65075830624321601662010-04-16T11:44:01.305-04:002010-04-16T11:44:01.305-04:00I think that's one of the hardest things about...I think that's one of the hardest things about having an "invisible" disease...you are always battling the fact that you don't look sick at all. People start second guessing how bad you really feel. I know that has been the case for me at least.<br />Just remember you are who you are and what you feel is real whether you look sick or not.hobbzhttps://www.blogger.com/profile/01329630388338314898noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-34674809972717692182010-04-16T11:18:45.757-04:002010-04-16T11:18:45.757-04:00I see I've already commented and didn't re...I see I've already commented and didn't remember -- how's that for feeling worse that you look! I can totally relate - the classic, 'but you don't look sick' that CFS presents. I hope you are feeling as good as you look quickly!Pamelahttps://www.blogger.com/profile/05578825920314020836noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-27234050096942488562010-04-16T08:50:41.337-04:002010-04-16T08:50:41.337-04:00D -
Yes, the constant mental monitoring is necess...D - <br />Yes, the constant mental monitoring is necessary but drives me crazy! I love your phrase - "running all the continual diagnostics"!<br /><br />Renee - <br />I know I should have the house closed up tight,but in spite of the allergies, I just can't do it - I;ve been waiting months to be able to open up the windows again!! I love fresh air and really hate being closed up inside....but I know it's making things worse.<br /><br />David - <br /><br />I do sometimes use sinus washes, and I need to start again - thanks for the reminder! Problem is that this time, the worst part is my eyes - constantly watering and sore. And I am overly sensitive to eye drops - I've tried them all - they help for a day or two, then my eyes get red and itchy - the cure is worse than the symptom!<br /><br />Shelli - <br /><br />Water for Elephants is great! You'll love it - can't wait to read your review.<br /><br />Jo - <br />Thanks for the kind words! Yes, I know I've done too much this week, no question. But from past experience, I also know that when these allergies hit this hard, it totally knocks me out. Usually, it lasts for about 10 days or so, so I still have a ways to go. It's nice to be back in the blogging world!<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-87734517018426765652010-04-16T07:10:57.456-04:002010-04-16T07:10:57.456-04:00Maybe, just maybe, it has something to do with jus...Maybe, just maybe, it has something to do with just having hit the ground running after a big road trip?<br /><br />Oh, how I know those horrible trying-to-rest naps when you know there's more to do. <br /><br />You take it easy now. It's great to have you back by the way.Dusty Bogwranglerhttps://www.blogger.com/profile/14378437798741434260noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-48741306042292096982010-04-16T00:24:43.652-04:002010-04-16T00:24:43.652-04:00Hope you are feeling better soon. I wear my crash...Hope you are feeling better soon. I wear my crashes all over my face -- deep circles and lines around my eyes.<br /><br />"The Help" is definitely on my list of have-to-read. My book club did it awhile back, but I wasn't able to go. I hope you had a great discussion. The latest book I'm waiting for is "Water for Elephants." I've heard great things about it, too -- you'll have to keep your eyes peeled for my review sometime!Shellihttps://www.blogger.com/profile/03068094486297918345noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-8908719468744181612010-04-15T23:20:55.142-04:002010-04-15T23:20:55.142-04:00Have you tried a neti pot for allergies? I was ske...Have you tried a neti pot for allergies? I was skeptical before trying it, but it really does seem to make a difference. The idea is it washes out all the junk (allergens) that gets caught up in your sinuses. <br /><br />DavidAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-51297799838547253732010-04-15T21:17:35.554-04:002010-04-15T21:17:35.554-04:00Sounds like you're doing pretty well Sue, espe...Sounds like you're doing pretty well Sue, especially after that long vacation.<br /><br />My daughter read The Help and wanted me to get it so I did. It's what I'll read next. It takes me weeks, sometimes months to read a book because I can only handle about 10 pages a day, but I'm so glad you recommend it highly too.Tonihttps://www.blogger.com/profile/05729837575450453607noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-3443300081740011622010-04-15T19:13:41.680-04:002010-04-15T19:13:41.680-04:00I have been keeping everything closed up tight as ...I have been keeping everything closed up tight as it is windy and high pollen counts....worst in years I am hearing.<br />I just had this happen today where I was at the oncologist's office and the nurse said first of all, "Do you ever question why ~ you have Lyme, CFS, allergies, AND cancer? That is too much for one person to deal with! Then she said, You LOOK SO GOOD! And too young to have 16 grandchildren...anyway.....it is hard isn't it. People always say that~ sometimes I wish I did look bad. But of course, just like your sensitive son, those closest to us know when things are not good...<br />sure hope you are on the mend soon....Reneehttps://www.blogger.com/profile/07089685282700680525noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-34179981069698279302010-04-15T17:56:46.665-04:002010-04-15T17:56:46.665-04:00Ugh allergies, I know what you mean. We were clea...Ugh allergies, I know what you mean. We were cleaning out some boxes of books yesterday and I'm having a small crash today just from all the dust! Hang in there and I hope you get some rest.Pamelahttps://www.blogger.com/profile/05578825920314020836noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-8319080030725919222010-04-15T16:57:51.753-04:002010-04-15T16:57:51.753-04:00It's really a mystery, isn't it? I think ...It's really a mystery, isn't it? I think I had a bad habit at one point of scrutinizing other people, trying to find some sign of why they were energetic and vital, while I was so often weak and strained. I'd think "that person looks the same as me, they're the same size as me, their complexion is the same, they don't look stronger or healthier... what's going on?"<br /><br />I explained to a family member one time that when I seem distracted, it's often because I'm running all the continual diagnostics of the invisible symptoms, scanning for the beginnings of a headache, or the aching body or shortness of breath that tells me I should rest. We need some kind of a visible meter or readout that tells people, like in science fiction stories. Like, "How are you doing?" and a slot on our arm starts spewing out sheets of data on the present moment's condition... it's tempting to carry around a recorded message sometimes and play it for people.<br /><br />That's great your kids are so in tune with it. My partner and I are like that... <br /><br />"Top of head headache and slight crushing sensation in chest?" <br /><br />"Yes, and bordering onto slight nausea?" <br /><br />"Exactly".<br /><br />It's sort of like a weird telepathy, sometimes.<br /><br />Enjoy resting up.<br /><br />D.Anonymousnoreply@blogger.com