tag:blogger.com,1999:blog-7368056645691128384.post2700371712654056830..comments2023-05-17T13:15:50.282+01:00Comments on Only Resting: I Have A Dream.... No, Really!Barry Fotheringhamhttp://www.blogger.com/profile/16158013718479616955noreply@blogger.comBlogger14125tag:blogger.com,1999:blog-7368056645691128384.post-18275505303746357282011-01-03T07:42:31.985+00:002011-01-03T07:42:31.985+00:00Thank you all for your comments :)
I've delib...Thank you all for your comments :)<br /><br />I've deliberately avoided following up on this blog entry since I wrote it as I wanted to let the dust settle and gauge reactions. This has been useful as I now have a clearer idea of how to progress, so thank you for your input.<br /><br />Dominique - thank you for your kind offer of hosting, I really appreciate it :) Yes, by all means go ahead and quote me on your blog. Thank you for helping to raise awareness! I''m about to add a new post that will flesh out a lot of the vague areas in this post though so perhaps wait to see that first.<br /><br />Kitty - the heart rate monitor I use is a Pulse Sonic K922. Others have reported good things about Polar and Omron models too.Barry Fotheringhamhttps://www.blogger.com/profile/16158013718479616955noreply@blogger.comtag:blogger.com,1999:blog-7368056645691128384.post-58238704339749376682010-12-30T16:36:22.378+00:002010-12-30T16:36:22.378+00:00Barry - I am really enjoying reading your blog. I...Barry - I am really enjoying reading your blog. I love this idea. Yes, it is a little daunting but I have no doubt that M.E./CFSers can do it. We are an amazing bunch! <br /><br />I would be willing to 'house' it on my website that I am launching in February. It is an organization that I am starting called Invisivle Awareness. The goal is to provide a space where one person can share their M.E./CFS story every month and the rest of us help it go viral. It is a way to provide a vehicle for their voice, if you will. So many of us live an almost invisible life. <br /><br />Anyway, I would love to host the pdf there if that would be acceptable to you.<br /><br />I love to do research as well but do to a chemical accident I was involved in this past June I now have a lot of difficulty comprehending the scientific type verbaige so I probably wouldn't be a good person for that.<br /><br />Having said that, however, if I can be of help in some other fashion, please let me know. <br /><br />Lastly, would you mind if I did a post on my blog and quote 1-2 paragraphs of your post (and will provide a link here) so I can let my readers know about your dream project?<br /><br />I'm glad you are still dreaming. That is what gives us hope! :-)dominiquehttp://www.4wallsandaview.comnoreply@blogger.comtag:blogger.com,1999:blog-7368056645691128384.post-68013628284826878272010-12-30T15:09:26.786+00:002010-12-30T15:09:26.786+00:00Great post! I was wondering what heart rate monito...Great post! I was wondering what heart rate monitor you have? Kitty xkittyhttp://www.mycfs.menoreply@blogger.comtag:blogger.com,1999:blog-7368056645691128384.post-52597137245956811272010-12-30T09:59:32.551+00:002010-12-30T09:59:32.551+00:00Here is my suggestion for one part of a document:
...Here is my suggestion for one part of a document:<br /><br />CFS for beginners<br /><br />I guess what I am thinking is that this document should really keep away from giving advice about treatments and supplements etc and just focus on trying to make it clear how important it is to ‘believe’ the diagnosis and to accept that trying to push through is WRONG. From what I gather nearly everyone who gets CFS continues to push in the early stages and I wish that I had been smarter and I had just gone straight into ‘rest mode’. When a doctor first told me I had CFS that was pretty much all she said … she didn’t tell me that pushing would make it worse and she didn’t say I needed to do as little as possible. When I found the doctor I currently have he did tell me these things but it was too late by then and also because I hadn’t yet spoken to seasoned CFSers I just didn’t believe it … so I pushed and pushed. I think if we can write a document that really gets the message through then it will really help people avoid making themselves worse.<br /><br />The other thing I think it should focus on is what newly diagnosed people can actually do to help themselves. Again I am not talking about treatments but practical things like finding a social worker who can help with services available in the persons area and applying for disability. I also wish I had had someone to just calm me down and say ‘don’t panic and don’t rush into anything’. I really felt like I had to do everything and find the cure that very week … I really needed a mentor or just someone to say ‘slow down and take care of your body first and then spend some time thinking about it all’. I needed to know I was not alone and there would be plenty of time to look at treatments. I think finding a way to accept it and understand the limitations should be everyones priority and looking at treatment secondary. <br /><br />There are already lots of websites with treatment options etc but I am not sure there is anything to help you before you get to that step …<br /><br />So that is basically my idea …. What do you think??Lee Leehttps://www.blogger.com/profile/02614823402670740413noreply@blogger.comtag:blogger.com,1999:blog-7368056645691128384.post-82067273635979097902010-12-30T09:02:17.683+00:002010-12-30T09:02:17.683+00:00Great idea, if anyone can, do it somehow I believe...Great idea, if anyone can, do it somehow I believe you can. Just to echo K, be careful. The idea is out there but I think it could do with some fine tuning. Look forward to the result one day.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-7368056645691128384.post-41854636938336911472010-12-30T08:23:45.568+00:002010-12-30T08:23:45.568+00:00Well I won't say it then :O)Well I won't say it then :O)Cusphttps://www.blogger.com/profile/10717783581169397585noreply@blogger.comtag:blogger.com,1999:blog-7368056645691128384.post-80307471056438301602010-12-30T07:54:06.707+00:002010-12-30T07:54:06.707+00:00I do think its possible. I set up an online resour...I do think its possible. I set up an online resource years ago for gay widowers. It took some time and research but I did manage to get it to work and it was received and used for several years. So ... even though we are sick I do think its possible if we just bite off baby steps ..Lee Leehttps://www.blogger.com/profile/02614823402670740413noreply@blogger.comtag:blogger.com,1999:blog-7368056645691128384.post-39352827685638838302010-12-30T07:50:59.047+00:002010-12-30T07:50:59.047+00:00Great idea Barry...I think if you start small it w...Great idea Barry...I think if you start small it will organically grow as you go along and others contribute.Rebecca Saundershttps://www.blogger.com/profile/02989087346478194985noreply@blogger.comtag:blogger.com,1999:blog-7368056645691128384.post-59324377290458440612010-12-30T06:50:13.915+00:002010-12-30T06:50:13.915+00:00KP - I knew either Cusp or yourself would caution ...KP - I knew either Cusp or yourself would caution me to look after myself ;) I appreciate it. And I will. Promise. It's just not in me to sit in the background though - I have to be doing something. Copyright issues are valid and it's on my list of 'snags'. Everything is possible to work around though :) Keep the musings flowing as I'm sure there are difficulties I haven't even imagined yet!<br /><br />Nadine - Welcome aboard :) Love your attitude. Let's do what we can and see where it takes us. At the very least, we will end up with an unofficial collection of perspectives and ideas from within the community. That, in itself, has significant value attached.Barry Fotheringhamhttps://www.blogger.com/profile/16158013718479616955noreply@blogger.comtag:blogger.com,1999:blog-7368056645691128384.post-27095024900841511862010-12-30T06:34:16.899+00:002010-12-30T06:34:16.899+00:00Barry - love your idea. I think that "blue-s...Barry - love your idea. I think that "blue-sky thinking" is the way to live, actually. Glad that you quoted Mr. Lennon. (After 13 years with this illness, I had Lennon's self portrait tattoo'd on my forearm, with his declaration "Imagine..." beneath it...) Nothing is impossible, my friend. Contributions will grow exponentially - Let's do it. Thanks for your leadership... dream on! =)Nadine Goransonnoreply@blogger.comtag:blogger.com,1999:blog-7368056645691128384.post-57822525093506640902010-12-30T05:46:11.683+00:002010-12-30T05:46:11.683+00:00hey, you've got to dream big...i do think you&...hey, you've got to dream big...i do think you've set yourself (and others!) a fairly ambitious task though. and was just thinking before too that it would probably involve a lot of work in terms of negotiating copyright of other peoples work if you want to include the best stuff out there. not saying it can't be done though, not at all. and like you say it may never eventuate...or it may become something wonderful. just PLEASE look after you, and know that in simply getting to know yourself better and sharing that you are already giving so much to the world.<br /><br />my idea...not really related (people with M.E. though. oh, maybe related?!)<br /><br />keep dreaming.Kirstenhttps://www.blogger.com/profile/16189107154073113619noreply@blogger.comtag:blogger.com,1999:blog-7368056645691128384.post-76098591249863780502010-12-30T04:23:07.668+00:002010-12-30T04:23:07.668+00:00Thanks KP :) Is your idea related or something qu...Thanks KP :) Is your idea related or something quite separate?<br /><br />I've been thinking about this for some time now but I've always been halted by thoughts of how difficult it would be and how great the risk was of it coming to nothing. There's also an element of not wanting to appear too....hmmm, what's the right word? grandiose? I'm sure some might read this and think "who does this guy think he is?".<br /><br />I've overcome that in my mind though. I'm only trying to make a contribution, as i'm sure everyone would love to be able to do. Thanks for joining the dream ;)Barry Fotheringhamhttps://www.blogger.com/profile/16158013718479616955noreply@blogger.comtag:blogger.com,1999:blog-7368056645691128384.post-71886043677766955032010-12-30T04:16:49.941+00:002010-12-30T04:16:49.941+00:00PS - you're definitely not the only dreamer.PS - you're definitely not the only dreamer.Kirstenhttps://www.blogger.com/profile/16189107154073113619noreply@blogger.comtag:blogger.com,1999:blog-7368056645691128384.post-87963660451574384982010-12-30T04:16:22.524+00:002010-12-30T04:16:22.524+00:00gosh, that bed may not be getting you to sleep but...gosh, that bed may not be getting you to sleep but it certainly seems to have given you a new lease on life! i sense this new energy behind those words - will help where and if i can (i too have an idea though...)Kirstenhttps://www.blogger.com/profile/16189107154073113619noreply@blogger.com