tag:blogger.com,1999:blog-22576999.post4750139759264863637..comments2024-03-16T10:39:00.522-04:00Comments on Live With ME/CFS: The Daily BattleSue Jacksonhttp://www.blogger.com/profile/14532098225905355332noreply@blogger.comBlogger18125tag:blogger.com,1999:blog-22576999.post-16839564094672508422012-10-21T16:43:42.294-04:002012-10-21T16:43:42.294-04:00Sue, Hang in there with SSDI. It took me 3 turn d...Sue, Hang in there with SSDI. It took me 3 turn downs (one time they said I could work and I was in a lengthy stay at the acute care ctr due to weakness), but I have since won and receive my benefits. The process took 2.5 years. My best to you and your family!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-31325106529974830932012-10-12T18:05:07.688-04:002012-10-12T18:05:07.688-04:00Love it!! I do that all the time - bits of songs ...Love it!! I do that all the time - bits of songs relevant to my current CFS situation will float through my head. Many nights, when we turn out the lights, either my husband or I sing, "Hello darkness, my old friend..."Sue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-55856323154553567082012-10-12T17:21:18.067-04:002012-10-12T17:21:18.067-04:00So the other day while I was crawling in bed for a...So the other day while I was crawling in bed for a lovely afternoon nap the notes to an old Barbra Streisand song came to mind, but somehow the lyrics got a little tweaked in my slightly off-kilter, but easily humored brain. Here, for your enjoyment--or not--is my newly written chorus to the tune of "I am a Woman in Love":<br />I am a woman in bed<br />And I'd do anything<br />To get back into my world<br />And be active again<br />On this hope I'll depend<br />Over and over again.<br />What'll I do?<br /><br />I gave me a slight giggle, and I truly hope it does the same for you. :)Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-47235050160171038482012-10-11T12:05:45.911-04:002012-10-11T12:05:45.911-04:00Sue, I'm also smack dab in the middle of this ...Sue, I'm also smack dab in the middle of this place you describe so well. And afternoons are a killer for me too - that deadly mid-afternoon time, oh! Sometimes I take prescription (opioid) painkillers just to have a small holiday from that wet-cement fatigue pain, but one can't do that on a regular basis. <br /><br />Making dinner *and* doing dishes? Too much!<br />Reading the Signshttps://www.blogger.com/profile/06338983880105866139noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-7883351545113627812012-10-11T10:22:14.956-04:002012-10-11T10:22:14.956-04:00I can really relate to this post Sue! I often wish...I can really relate to this post Sue! I often wish I could give someone else all my symptoms just for a couple of minutes, so that they can understand. But reading your post reminds me that there ARE other people out there who know how I feel, as you just described my daily struggle perfectly! Staying positive is definitely a hard task in these circumstances but I think you do a great job & you're very inspiring to other CFS sufferers :)Cherylnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-15673091117703772982012-10-11T07:19:20.545-04:002012-10-11T07:19:20.545-04:00Ah OK...I thought your husband did do a lot but I ...Ah OK...I thought your husband did do a lot but I understand a) that he just wants to rest when he gets back from work and b)that you feel you have to<br />step in and give him a chance to relax too.<br /><br />Any illness, especially a chronic illness impinges of everyone and everything in the family :( xCusphttps://www.blogger.com/profile/10717783581169397585noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-80046567729823050402012-10-10T15:31:21.212-04:002012-10-10T15:31:21.212-04:00Sue, I had not seen that quote. It sums it all up...Sue, I had not seen that quote. It sums it all up very well. I am resisting getting back in the bed today trying to work through the fatigue and fog. Thankfully, I have recovered so much that this kind of day is not my norm, but when they happen all the old feelings flood back into my mind. I am grateful for your courage to write and share even on a bad day. Blessings to you.The Gluten-Free 'Dish'https://www.blogger.com/profile/03357615732853348757noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-91461660925282689212012-10-10T14:06:01.022-04:002012-10-10T14:06:01.022-04:00You bring up a good point - even with a great doct...You bring up a good point - even with a great doctor, they have no idea what our daily life is really like - they see us once every few months. And I have told my doctor that certain treatments have helped - like Imunovir, LDN, and beta blockers - so that gives her the impression that I am doing better...and I am, but "better" is so relative for someone with CFS! It means I don't need to lie down ALL day anymore, just periodically through the day.Sue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-30128902801693674102012-10-10T14:01:06.950-04:002012-10-10T14:01:06.950-04:00Oh, perhaps I wasn't clear in this post becaus...Oh, perhaps I wasn't clear in this post because I was in such a fog when I wrote it...<br /><br />My husband DOES do a lot around the house. He does dishes every night after dinner and he helps with the cooking when I ask. It's just that I know he hates doing stuff around the house after working a full day and resents it, so I try to help whenever I can. And during the day I am on my own - often with at least 1 sick kid at home - so I am doing everything during the day.<br /><br />Let's face it - CFS isn't fair for anyone - the patient, the spouse, the kids...Sue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-41139183086600947552012-10-10T12:27:07.009-04:002012-10-10T12:27:07.009-04:00You're right Sue :) You are at one point on t...You're right Sue :) You are at one point on the Earth and I am on another thousands of miles away but your thoughts are the exact same as mine. <br /><br />Yesterday I thought '...if a normal, healthy person woke up feeling the way I feel on a good day, he or she would decide to spend the day in bed. There's no way for a normal person to understand our daily struggle': almost word for word<br /><br />I am more fortunate than you in that my OH and I share the cooking, the clearing up, (we have a rule that, if at all possible, whichever one of us cooks -- the other clears up and stacks the dishwasher), the cleaning etc but even so, the rest is the same. The thing that keeps me trudging along is the need to look after the family.<br /><br />The Social Security stuff is the same too. As you know I've already done all that so I really feel for you and hope it comes good xxxCusphttps://www.blogger.com/profile/10717783581169397585noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-86068331203944293532012-10-10T10:41:44.918-04:002012-10-10T10:41:44.918-04:00Love that quote, so true!
Ah, I feel your pain. ...Love that quote, so true!<br /><br />Ah, I feel your pain. Going through that disability process was so humbling (and a lot worse things). My GP at the time who had only seen me a few times wrote that I am generally a 6 or 7 out of 10 which almost lost it for me. According to my specialist's scale at the time 6/10 WAS disabled.<br /><br />I hear you re: struggling with every moment. I do find, like you say, sometimes it is just breaking the inertia after a rest....when we feel so awful and exhausted. <br /><br />May I just say you a very good writer. So often you put to words these struggles, both physical and emotional, so adeptly.upnorthhttps://www.blogger.com/profile/04283010424792189579noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-91841617413160210262012-10-10T09:22:03.333-04:002012-10-10T09:22:03.333-04:00This comment has been removed by the author.Reading the Signshttps://www.blogger.com/profile/06338983880105866139noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-17989366330086225622012-10-10T09:01:00.889-04:002012-10-10T09:01:00.889-04:00You are so right about the Social Security process...You are so right about the Social Security process. I had put it out of my head for the past year while I was waiting for a court date, but now that I have one (in Dec), I can't stop thinking about how on earth I can prove how I feel. It is all such a humiliating and dehumanizing process - to have to try to prove how disabled you are while their reviewers keep saying you can work full time.Sue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-9952673196281265452012-10-10T08:59:05.894-04:002012-10-10T08:59:05.894-04:00Mornings are actually my best time, Heather, but t...Mornings are actually my best time, Heather, but the late afternoons are killer for me. I know that's the reverse for many with CFS.<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-59511123024024735792012-10-10T08:58:15.062-04:002012-10-10T08:58:15.062-04:00Thanks for that last line, Renee - it helps so muc...Thanks for that last line, Renee - it helps so much just to hear someone say that.<br /><br />Most of the time, I really am grateful for what I have; I know there are so many others with CFS worse off, bedridden or housebound. But sometimes that constant struggle (with very little being accomplished to show for it) just gets to be too much.<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-74286931196847848752012-10-10T00:32:19.090-04:002012-10-10T00:32:19.090-04:00Very moving quote. I can relate to what you're...Very moving quote. I can relate to what you're describing. <br /><br />And I don't think the Social Security stuff helps. One, it draws attention to all you can't do, since you have to list that stuff on your application it brings it all very much to the surface. And two, it's hard being so limited and having something you need denied to you by those who don't understand, don't care to understand, etc. <br /><br />At least you know that pretty much everyone has to fight social security and that getting denied initially doesn't mean you won't get approved eventually. Keep fighting and try to not let it get you down in the process, I know it's much easier said than done. Tomorrow is another day, like you said, and I hope it will be easier.Readernoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-30596443028291572202012-10-10T00:27:56.242-04:002012-10-10T00:27:56.242-04:00so well said sue - well well said - the mornings a...so well said sue - well well said - the mornings are always the worst for me - i started a new mantra when i wake up feeling so awful - this is not me - this is the illness and i try and separate a bit so i can take those baby steps love the courage quote - thanks for it. xo heatherhkdhttps://www.blogger.com/profile/03606859927429573387noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-22207812055471010202012-10-09T21:16:24.186-04:002012-10-09T21:16:24.186-04:00This is one of my favorite quotes too...it applies...This is one of my favorite quotes too...it applies across the board for so many situations. The heavy cement description is good. With all you manage, Sue, and your great attitude, I don't think I realized what a challenge each day is for you. Reneehttps://www.blogger.com/profile/07089685282700680525noreply@blogger.com