tag:blogger.com,1999:blog-22576999.post2293080331232986084..comments2024-03-16T10:39:00.522-04:00Comments on Live With ME/CFS: Happy Mardi Gras - Celebrate!Sue Jacksonhttp://www.blogger.com/profile/14532098225905355332noreply@blogger.comBlogger6125tag:blogger.com,1999:blog-22576999.post-69623328056048775762012-02-24T17:00:45.599-05:002012-02-24T17:00:45.599-05:00Thanks for the support, Amy :) I am glad to hear ...Thanks for the support, Amy :) I am glad to hear you were able to finish your high school education and are taking online classes now - that is fabulous!<br /><br />For someone just beginning to research treatments, I would suggest starting with:<br />1 - treat sleep dysfunction<br />2 - treat orthostatic intolerance<br />3 - look for and treat underlying infections and improve immune system<br /><br />You can find info on all of these on my blog - try using the search function, but please let me know if you need help and I will send you the links to the appropriate posts.<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-77758637812694408442012-02-24T10:08:03.424-05:002012-02-24T10:08:03.424-05:00Hi Sue,
Thank you for replying so quickly! I have...Hi Sue,<br /><br />Thank you for replying so quickly! I have stumbled across a few other people with CFS/ME online day. It feels so great to finally be connecting with people in the same situation. And it has given me the confidence and reassurance than doing my own blog on cfs/me is a good idea. <br /><br />Unfortunately the doctors I have seen have not been able to help me at all. A lot of the doctors, sadly, do not believe CFS/ME is such a debilitating illness and the ones that do cannot offer any help or treatment. Mum and I had to figure everything out on our own. <br /><br />I have read a bit more of your blog and a couple of things came to mind. You mentioned that ME/CFS is different for everyone and people need to find their own way of dealing with it that suits them. I completely agree - it has taken me a long time to figure out what works for me and now I am coping ok physically. This leads me onto my second point - I noticed someone had commented saying they didn't Jamie should keep going to school. As someone who has fought hard to continue their education I know firsthand how important it was for me to get my GCSEs and finish school and also how it really helped my mental state. I am so glad he has the support and I really do hope he reaches his goal. I have gone on to pass a fiction writing course and I am now enrolled on a journalism course. Learning from home is the only option for me at the moment and I am slightly behind my peers, most are at university now but when I first got diagnosed I really didn’t think I could get this far. It shows you can really do anything if you just keep positive. :) <br /><br />AmyAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-69335249943262217602012-02-24T08:48:03.035-05:002012-02-24T08:48:03.035-05:00Hi, Amy and welcome!!
I'm glad you found me. ...Hi, Amy and welcome!!<br /><br />I'm glad you found me. There's a wonderfully supportive community of ME/CFS patients online that I think you will really find valuable - we all understand what you are going through, and it's a relief to know there are others "out there" who truly understand because, yes, we also have plenty of people here in the US who don't get it, too. Though from what I've heard, you have it even worse in the UK, with less access to treatments.<br /><br />Anyway, welcome! I look forward to getting to know you better.<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-39631318151065737782012-02-24T06:27:56.417-05:002012-02-24T06:27:56.417-05:00Hi Sue,
I've just come across your blog and k...Hi Sue,<br /><br />I've just come across your blog and knew straight away I needed to leave a comment. I also have CFS and your blog is the first I’ve come across which talks about coping with it on a day to day scale, with emotion and honesty. I live in the UK and I've been through a tough time getting people to recognise it, especially doctors. It seems here a lot of people do not view it as an 'illness' - I don't know whether that is different in the US? Anyway I will leave it there - as I like to ramble. There is so much to look at on your blog and when I have the time I shall read it all :) Thank you though, it really means a lot to see someone talking about it and to find someone who knows what you are going through! :) Amy xAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-53302864549843383122012-02-21T17:48:59.118-05:002012-02-21T17:48:59.118-05:00Oh, yes, Renee - I believe the pancake tradition c...Oh, yes, Renee - I believe the pancake tradition comes from the Catholic custom of celebrating Shrove Tuesday which is also today. Here's what Wikipedia has to say about it:<br /><br />http://en.wikipedia.org/wiki/Shrove_tuesday<br /><br />I just learned of it recently from a Jeopardy question! We play a daily calendar version of Jeopardy at dinner every night - looks like I am learning something from it! ha ha<br /><br />Enjoy your pancakes - they sound yummy!<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-32022152447911823562012-02-21T17:07:18.917-05:002012-02-21T17:07:18.917-05:00Tomorrow is Ash Wednesday for us....today is "...Tomorrow is Ash Wednesday for us....today is "fat Tuesday" and we have pancakes every Fat Tuesday for some reason or another, so tonight we will be having our gluten free pancakes with maple syrup, fresh strawberries and whipping cream made from coconut milk! Oh and some almond butter for protein in the pancakes. We love this special meal....it is not a New Orleans meal, but it is our way of celebrating.Reneehttp://www.lymeliving.blogspot.comnoreply@blogger.com