tag:blogger.com,1999:blog-8824828113983189391.post6498186067269035927..comments2024-03-09T09:28:24.274-05:00Comments on Despite Lupus: My lupus fatigue definedSara Gormanhttp://www.blogger.com/profile/07608238591846611898noreply@blogger.comBlogger14125tag:blogger.com,1999:blog-8824828113983189391.post-10681677233968035922013-12-22T11:09:22.642-05:002013-12-22T11:09:22.642-05:00so glad you found us! welcome to the world of lupu...so glad you found us! welcome to the world of lupus, and know that u are most definitely NOT alone. i'll look forward to hearing from u again...take care until then. Sara Gormanhttps://www.blogger.com/profile/07608238591846611898noreply@blogger.comtag:blogger.com,1999:blog-8824828113983189391.post-30362823915805002052013-12-21T18:40:58.654-05:002013-12-21T18:40:58.654-05:00Hi Sara,
I'm relatively new to Lupus and if ...Hi Sara, <br /><br />I'm relatively new to Lupus and if I'm honest I completly doubted the doctors once they diganosed me. even though my blood samples and kidney biopsy were all the proof I needed. I just felt like it was normal to have this overwhelming tiredness as everyone leads such hectic lifestyles but reading this post and finding your blog makes thing crystal clear to me. I need to learn to listen to my body the way you do, understand each feeling and sign. I too easily put things down to 'I'm just not a very energic person', which totally isn't true. <br /><br />Thank you for your posts! Now I've found this site I will be a loyal reader! <br /><br />VxAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8824828113983189391.post-29470073705894826532013-09-03T14:40:26.670-04:002013-09-03T14:40:26.670-04:00Thanks for commenting and well wishes!Thanks for commenting and well wishes!Sara Gormanhttps://www.blogger.com/profile/07608238591846611898noreply@blogger.comtag:blogger.com,1999:blog-8824828113983189391.post-23326048008170301502013-06-26T02:54:46.023-04:002013-06-26T02:54:46.023-04:00It is certainly hard to have some condition that y...It is certainly hard to have some condition that you just can get away from. And it is good that you endure it, and can do things that some people with the same condition are afraid to do. I hope your <a href="http://thesishelpdesk.com/" rel="nofollow">thesis help</a> you take your mind of the pain that are cause by your condition. Anyway, good luck in whatever things you like to do in your life. Kimberly Hoskinsonnoreply@blogger.comtag:blogger.com,1999:blog-8824828113983189391.post-813787487807669622012-12-11T21:43:26.015-05:002012-12-11T21:43:26.015-05:00Oak haven - I know - i don't think people real...Oak haven - I know - i don't think people really can understand if they've never experienced it. In fact, a business associate who's worked for a prominent lupus organization read this post, and commented on how she now has a much better idea what it means to have lupus fatigue. My hope is that it will in turn help the patients she comes into contact with! Thanks for sharing. Sara Gormanhttps://www.blogger.com/profile/07608238591846611898noreply@blogger.comtag:blogger.com,1999:blog-8824828113983189391.post-52573484374836698752012-12-11T21:41:01.685-05:002012-12-11T21:41:01.685-05:00Terrie - I'll definitely check out your illust...Terrie - I'll definitely check out your illustrations! I think whatever works for you is great - and I'm so happy to hear that you've found (and actually created!) a supportive environment to help you cope and manage lupus. It definitely helps to talk it through with others. i probably wouldn't keep my blog going otherwise!Sara Gormanhttps://www.blogger.com/profile/07608238591846611898noreply@blogger.comtag:blogger.com,1999:blog-8824828113983189391.post-33312169673146918132012-12-11T21:39:14.248-05:002012-12-11T21:39:14.248-05:00Wendy and Cassie - Thank you for understanding and...Wendy and Cassie - Thank you for understanding and sharing! You both mentioned this concept of not being able to think straight enough to stop - and I think that's a valuable statement for all of us to consider. I suppose the goal for the next time then, is to stop before we get too tired that we can't! I'll try if you will! :) Sara Gormanhttps://www.blogger.com/profile/07608238591846611898noreply@blogger.comtag:blogger.com,1999:blog-8824828113983189391.post-22079145952074177002012-12-11T12:32:04.274-05:002012-12-11T12:32:04.274-05:00Aymie - So glad to hear you're back to school!...Aymie - So glad to hear you're back to school! Sorry you have the challenge of managing lupus alongside a thesis, but I really appreciate your comments. knowing that you understand that inability to articulate makes it that much easier for me to cope with! Sara Gormanhttps://www.blogger.com/profile/07608238591846611898noreply@blogger.comtag:blogger.com,1999:blog-8824828113983189391.post-68034120153867274742012-10-09T12:07:59.937-04:002012-10-09T12:07:59.937-04:00oh yes, that is so so true.
I could relate so muc...oh yes, that is so so true.<br /><br />I could relate so much to all of it. My cut off point is when I am not hungry. That's the line where I know once I cross it's a rough recovery back. Sometimes it happens and I am powerless to stop it. Other times slowing down, taking extra naps like you talk about can make all the difference.<br /><br />I don't think people can understand that fatigue and brain fog unless they have been there. I had a person say to me "well I'm tired too" and I wanted to strange them :) it's so not the same thing as that extreme fatigue you feel in your bones and you can't move no matter how motivated you are.<br /><br />Lupus has taught me to be in tuned with my body. To take time when I need it. It has taught me the necessity of having a balanced life.<br /><br />Caraoak haven alpacashttps://www.blogger.com/profile/02603968424369860667noreply@blogger.comtag:blogger.com,1999:blog-8824828113983189391.post-22981350975554770212012-10-06T16:32:41.129-04:002012-10-06T16:32:41.129-04:00Hi Sara,
I could have written that page today too....Hi Sara,<br />I could have written that page today too. But I could not have remembered the words to write, as you stated in you post. Thank you for writing this Blog, I did one for a while, then I just to fatigued to even think, and most people asked why I was like that. well if they only knew how it is to have lupus. I draw and do illustrations to depicted how I feel at different time in a lupus flair. Now I have a group on Facebook and for me is much better, we trade secret ideas to use for different illness of lupus and what to watch out for. We keep it only love can be written on the posts, no bad mouthing or they have to leave but cuss words are allowed. Only support for each other and a safe haven to vent. You are so right on in your descriptions of a lupus flair. Thank you for sharing you life with us. ♥Terriehttps://www.blogger.com/profile/15105247185851250432noreply@blogger.comtag:blogger.com,1999:blog-8824828113983189391.post-72745756231883702922012-10-06T00:45:00.747-04:002012-10-06T00:45:00.747-04:00Thank you for describing this so well!!! Especiall...Thank you for describing this so well!!! Especially that inability to 'process' input, OR give intelligible output. Or make simple decisions! It's all VERY frustrating and very hard to describe, yet you did it so well. The weird thing that happens to me is being so tired but so used to pushing through that I can't even make the intelligent decision to STOP. Or I won't even realize that part of the problem is I'm overdue to take some med. Pushing beyond exhaustion and making things worse...this is what your book teaches us NOT to do. But even the best of us won't always be in full control ;-) . Hope you're doing better, Sara. Be well.Wendyhttps://www.blogger.com/profile/07901026275536217683noreply@blogger.comtag:blogger.com,1999:blog-8824828113983189391.post-47830366265306038452012-10-05T20:57:24.533-04:002012-10-05T20:57:24.533-04:00Hi Sara,
I haven't written in soooo long becau...Hi Sara,<br />I haven't written in soooo long because I was living through care giving of family, job responsibilities and added things that I just seemed unable to say "no" to on any given day. I was feeling pretty smug about myself since being on CellCept - I had turned the corner and left Lupus behind! <br /><br />I was thrown back into the arms of Lupus with the same type of fatigue!! Yet, I kept trying to meet the task of holding a church reception for 100 people - all of the plans, etc. I woke up tired; existed all day long with such exhaustion there were moments when I really thought I had to be dying because no one could feel like that and still go on! One morning, I showered for work - not much pain but had to lay back down soaking wet because I didn't have the energy to dry off and get dressed. I didn't have the energy to think about the pain because the fatigue was so overpowering! How does it do that to us?!?!?!<br /><br />The loss of appetite was incredible; I was too exhausted to eat and it just took too much energy. I loss about 5 pounds in less that two weeks. I had stomach and intestinal upset, that still lingers.<br /><br />But, it's the fatigue that is so demoralizing! I kept going because I just hated to give into it and tell my family. So, the fatigue became debilitating. You're right - I couldn't think straight! Even the smallest thing - couldn't remember things; it took me twice as long to process and do anything I'm certain people thought I was losing my mind!<br /><br />I seem to be gaining some ground but it doesn't take much to drive me down. <br /><br />Sara and Aymie - you're both so spot on! Thank you both for sharing. <br /><br />I feel like I'm back in touch with my Lupus "family." Thank you for being there. CassieCassienoreply@blogger.comtag:blogger.com,1999:blog-8824828113983189391.post-55543629983818495882012-10-05T13:27:01.858-04:002012-10-05T13:27:01.858-04:00Oh my gosh....thank you. This is perfect!Oh my gosh....thank you. This is perfect!Kristi Thomsenhttps://www.blogger.com/profile/05171184382020654151noreply@blogger.comtag:blogger.com,1999:blog-8824828113983189391.post-9366223242949800602012-10-05T12:22:19.805-04:002012-10-05T12:22:19.805-04:00Mine Is similar, but with a few added points.
I ...Mine Is similar, but with a few added points. <br /><br />I feel ready to start crying at any given moment, simply because I can't even begin to think. It feels as if every little thing takes a stupid amount of effort without showing nearly enough results. During one of my worst days last year I remember having to get out of the shower, mid hair wash, just to lay down. Then there's the pain of it... You try to lift your arms but can't because it just hurts. <br /><br />The worst bit, I feel, is not being able to speak because you can't find the words. It's as if you can't think fast enough to get the words out. I had that happen to me last week in a meeting with my thesis supervisor... I sat there for a good five minutes trying to explain what I was trying to ask her, but it just wouldn't come out. She somehow managed to understand what I meant from a couple of drawings. <br /><br />(And, yes, thesis supervisor! After a break of four years, I'm back to finish my degree while kicking lupus' butt! Sensibly, of course, with lots of sitting down and resting.)Aymienoreply@blogger.com