Guest guest Posted September 22, 2007 Report Share Posted September 22, 2007 Terri, I explain this to my family & friends as my energy being like money in the bank--when it's gone, it's gone, until somebody puts more in. If you spend it all at once, it goes faster. When I push myself to do things I want to do or need to do, I know I'll pay for it later, and my family is learning to expect that also. I've been working all day on stuff for the Hike for Lung Health tomorrow--visors for the kids to wear, painted a t-shirt for myself (since my official shirt hasn't arrived), made signs to attach to the dogs (yes! of course!), a sign for my scooter, which I'm taking mostly to carry my water, footstool, the dogs' water & cups, a box of ziploc sandwich bags with a few candy kisses inside along with an explanation of the walk & a K.I.S.S. label outside (Kick In to Stop Sarcoidosis). Oh, yeah, I made a flag for the scooter with the Hike logo. We are going to take lots of pictures. First I'll send at least one to the Community Snapshot page of our paper, and the rest I'll save for the Features Editor's story. Anyway, I've putzed around with all this stuff since Friday night & finally finished it (I even ironed on a K.I.S.S. logo over a hole in my jeans; they needed a patch, why not that?!?) Now I'm getting ready to hit the sack, get up about 9:30 for church, then come home & get ready for the walk. My daughter Theresa, Jon & , my niece Sharon, Gwyn & Trent are walking with me & possibly some friends from church & work. My son Brad went to Missouri this weekend to see an old friend, but he wore one of the KISS wristbands. If I'd thought of it, I'd put a KISS sign in his car's back window! So, I'm excited about this event (you'd think I was running the Boston Marathon, but hey, I gotta start somewhere, right?), but I know that I will be totally useless for the next couple of days. There is plenty of literature about the fatigue of sarcoidosis; Yvonne in The Netherlands mentioned a study on fatigue being done over there. It seems to be pretty universal, from what I've heard. So like others have said, find a way to maintain balance, but when you know something is coming up that will empty out your energy account, plan for it & for the recovery period afterward. And don't be shy about letting others do the work (family dinners, etc.) & parking on the sofa, or a recliner if you can get dibs on it! Ramblin' Rose Moderator A merry heart is good medicine. Proverbs 17:22 "How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these." ~ Washington Carver To: Neurosarcoidosis From: mosaicgirl1@...Date: Fri, 21 Sep 2007 18:53:47 +0000Subject: question Hey Guys,I wanted to know if I am crazy or if this happens to anyone else. If Idon't take time to rest and push myself for a couple of days, I feellike major crap and have an increase in symptoms. If I rest for acouple of days the symptoms become minimal and I am back at it in thevicious circle pushing myself to get things done then back in the samedownward spiral.What do you guys think.Terri G. Gear up for Halo® 3 and get a $25 Best Buy gift card. It’s our way of saying thanks for using Windows Live™. Get it now! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2007 Report Share Posted September 22, 2007 Terri, I explain this to my family & friends as my energy being like money in the bank--when it's gone, it's gone, until somebody puts more in. If you spend it all at once, it goes faster. When I push myself to do things I want to do or need to do, I know I'll pay for it later, and my family is learning to expect that also. I've been working all day on stuff for the Hike for Lung Health tomorrow--visors for the kids to wear, painted a t-shirt for myself (since my official shirt hasn't arrived), made signs to attach to the dogs (yes! of course!), a sign for my scooter, which I'm taking mostly to carry my water, footstool, the dogs' water & cups, a box of ziploc sandwich bags with a few candy kisses inside along with an explanation of the walk & a K.I.S.S. label outside (Kick In to Stop Sarcoidosis). Oh, yeah, I made a flag for the scooter with the Hike logo. We are going to take lots of pictures. First I'll send at least one to the Community Snapshot page of our paper, and the rest I'll save for the Features Editor's story. Anyway, I've putzed around with all this stuff since Friday night & finally finished it (I even ironed on a K.I.S.S. logo over a hole in my jeans; they needed a patch, why not that?!?) Now I'm getting ready to hit the sack, get up about 9:30 for church, then come home & get ready for the walk. My daughter Theresa, Jon & , my niece Sharon, Gwyn & Trent are walking with me & possibly some friends from church & work. My son Brad went to Missouri this weekend to see an old friend, but he wore one of the KISS wristbands. If I'd thought of it, I'd put a KISS sign in his car's back window! So, I'm excited about this event (you'd think I was running the Boston Marathon, but hey, I gotta start somewhere, right?), but I know that I will be totally useless for the next couple of days. There is plenty of literature about the fatigue of sarcoidosis; Yvonne in The Netherlands mentioned a study on fatigue being done over there. It seems to be pretty universal, from what I've heard. So like others have said, find a way to maintain balance, but when you know something is coming up that will empty out your energy account, plan for it & for the recovery period afterward. And don't be shy about letting others do the work (family dinners, etc.) & parking on the sofa, or a recliner if you can get dibs on it! Ramblin' Rose Moderator A merry heart is good medicine. Proverbs 17:22 "How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these." ~ Washington Carver To: Neurosarcoidosis From: mosaicgirl1@...Date: Fri, 21 Sep 2007 18:53:47 +0000Subject: question Hey Guys,I wanted to know if I am crazy or if this happens to anyone else. If Idon't take time to rest and push myself for a couple of days, I feellike major crap and have an increase in symptoms. If I rest for acouple of days the symptoms become minimal and I am back at it in thevicious circle pushing myself to get things done then back in the samedownward spiral.What do you guys think.Terri G. Gear up for Halo® 3 and get a $25 Best Buy gift card. It’s our way of saying thanks for using Windows Live™. Get it now! Quote Link to comment Share on other sites More sharing options...
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