Monday, June 8, 2009

Other People's Blogs

My brain fog is acting up today (I'm having trouble concentrating) and I'm feeling a bit nauseated, so this entry will be shorter than usual.

I'm very new to the blog world, so I need a little help. I am interested in creating a list of bloggers with CFIDS/CFS/ME (or who blog about it even if they don't have it) and including links to their blogs on my site.

If you know of any such bloggers (or you yourself blog about CFIDS/CFS/ME) please respond to this post and include the blog address(es). Thanks!

Note added on Monday, June 15, 2009: I also want to add links to interesting or useful websites for people with CFIDS/CFS/ME, so please post those links, too. Thank you!

10 comments:

Anonymous said...

Hi Alyson,

Here are a couple:

http://aboutmecfs.org/blog/
http://cfswarrior.blogspot.com/

Hege Renate said...

www.TiredofME.com

Shelli said...

Hi, Alyson! There are several wonderful people with CFS who are blogging about their journey. You are welcome to come visit my blog at www.livingthecfslife.blogspot.com. I have a blog roll on the sidebar that you are welcome to visit. Renee, Sue, Jo, and more have become my dear friends, and I'm sure they would welcome you into their cyber-circle as well!

Shelli
www.chronic-fatigue-community.com

Anonymous said...

Hey, Alyson!!! (From Shreveport,LA.) Just Google "Blue Butterflies", and you will find a wonderful, supportive, information-filled website for "US". It was started 2 or 3 years ago by Bonnie in Australia. There are only a couple of us from USA, but I find it lots of fun chatting with so many folks from AUS & the UK, etc, who have the same issues. It took me years also to get my diagnosis, and unfortunately it came 1-1/2 weeks after losing the best job I'd ever had. Now I can't work, am sick in bed a lot of the time, and am 5 months to a year away from getting my Disability, if in fact our prayers are answered & it gets approved by then. (Have been trying to get it for the past 8 months.) You are fortunate that you have a husband who met you when you were already ill & who is so supportive. Mine tries to understand (we've been married almost 34 years)but he has lots of issues of his own, we're a lot older than you, and my illness really does make it extremely hard on him. My poor dear mother is 82 years old (though she seems like 56 or 62) and is working 4+ part time jobs to make ends meet. She feels so bad 'cause she can't help me like she used to, & I tell her, you shouldn't have to, you've raised your children, I should be doing for you. I miss out on time with my grandchildren, on events that are important to me, I have no personal income, and husband has grown to resent that fact... No one understands, because they have NO PERSONAL FRAME OF REFERENCE. The only ones who do are folks I'm fortunate enough to know who also have this illness. We keep eachother halfway sane, and alive, and hopeful, and informed, and LAUGHING!!! Sense of humor is SO INCREDIBLY IMPORTANT in battling this (or I guess any) disease. My doctor tells me, this illness won't kill you, but there may be times it makes you WISH you would die. I'm not so sure. I am starting to think that the intensity with which this affects every system in our bodies, and the fact that we get to the point we don't even go to the doctor with the symptoms unless we've tried all the armoires full of meds & we're at our wits' end, I think some of MY symptoms in particular COULD have the capacity to kill me. I hope that doesn't happen, cos there is so much more I want to do before I leave this world. Especially spending time with my grandkids & friends on our houseboat we bought last year, and riding my new bike I haven't been able to ride yet, and becoming a published author, not just once either!!! And mostly getting back to a point where I can regain my husband's respect & really show him how much I love him, no matter how much of an ass he's been some of the time throughout this ordeal. Thanks for representing us at the Department of Health & Human Services CFS Commitee meeting. By the way, the website I mentioned has a link to Lauren Hillenbrand's CFIDS story. She's great... she is the author of Sea Biscuit, about the racehorse, and she wrote it while bedridden with this illness! She chose to go public about her CFIDS at a time when it was still regarded as a psychiatric issue, and many of us feel she helped pave the way, so that we don't have it QUITE as hard as it would have otherwise been. - - - -Susana

alyson said...

Hi everyone, Thanks for sharing your links and stories with me. I wish you the best!

Raven said...

Hi Alyson. Great blog! I'm the admin of Blue Butterflies and manage the blog that goes with it (you have it listed). I know it's not a busy blog but would you like me to list your blog on there?

alyson said...

Hi Raven, I'd love for you to add my blog to your list. Thanks!

Laurel said...

Hi, Alyson.

I just stumbled upon your blog on Wellsphere. I enjoyed reading some of your entries!

I have what is currently a one-time entry blog that I just started last month. I originally wasn't going to add to it (I just wanted to share my story), but I am now hoping to do so later if my health permits. I have very severe CFS/ME, and am among the minority who is bedridden. But I thought I'd share it with you anyway!

http://dreamsatstake.blogspot.com

Keep up the good work, and best wishes to you for better health.

Laurel

greenwords said...

Hi Alyson, there's an article from 2006 that may interest you, here's the link:

http://www.cfids.org/cfidslink/2007/040705.asp

Happy blogging!

:)

perpetualspiral said...

I have ME/CFS, it is not all I blog about, but it is part of my life so it finds its way into my posts all the time :) http://perpetualspiral.blogspot.com

Our org also has a blog: http://wamcare.blogspot.com and website: http://www.wamcare.org

On the resources page of the site, there is a list of other CFS/ME blogs and websites, feel free to poach any or all of them :D