There are many top bloggers out in the blogosphere who are writing about living with chronic fatigue syndrome / myalgic encephalomyelitis (CFS / ME), their experiences in managing their illness, and giving tips and support to other people with CFS. I keep discovering more every day.
Finding these great blogs can sometimes take a bit of work though, so, considering people with CFS / ME are notoriously low on energy, I just thought I’d save you some by listing 5 Top ‘Living With CFS’ blogs that I enjoy reading. I’m quite sure there are many more, and you can tell me all about them in the comments section!
1. NoPosterGirl.com
This blog blows me away every time I read it. Jocelyn just has an incredible gift with words, and an ability to express herself and capture a situation, emotion or experience in a way that very few people can . The fact that she happens to be one of the most severely-affected human beings on the planet living with CFS/ME/CFIDS (according to one of the world’s leading specialists, Dr Cheney, not just in her mind!), makes it that little bit more amazing that she can write such incredibly insightful, thought-provoking blogs that are also always infused with a great sense of humour.
I love that despite the seriousness of her illness, Jocelyn still doesn’t take herself too seriously. She also doesn’t come across as a victim in any way, despite her physical fragility. If anything, she comes across as a smart, savvy, powerful woman who happens to have an incredibly debilitating illness that weakens her physically, but can’t get to her strong core.
I could refer you to most blogs on her website and I’d be doing you a favour, but starting with her How It Began section will give you a nice overview of her compelling way of telling a story, along with her sense of humour. This page for the newly diagnosed CFS patient is also great, as is this related post. To get inside the immensely knowledgeable head of Dr Cheney read this recent, fascinating post, and if you’re feeling mentally strong enough, read this tear-jerker post on Jocelyn’s worst period of her CFS (DO NOT read if you are in a fragile emotional state yourself).
Jocelyn may protest she is “no poster girl” for ME / CFS, but she IS an incredible writer and blogger on the topic of living with CFS. She has the qualities of a novelist whose book you just can’t put down!
2. Pajama Daze
This blog, written by a lovely lady who I refer to as PJ, is truly an amazing website/home base for the chronically ill. PJ has CFS, along with a number of other health conditions, but that doesn’t dampen her enthusiasm for life or her passion for being of service to others with chronic illness.
There are actually multiple blogs within this great site, with a range of guest bloggers posting on the main blog (such as the most recent, excellent post How Can I Possibly Exercise If I’m Bedridden by FitnessForIllness.com) (along with PJ’s own blogs like her recent Sound-Of-Music-style list of A Few Of My Favourite Things) and other pages on the site, such as Joyful Workers (this post by yours truly featured recently :-)). There are also great pages that allow spoonies* to show off their creative side – Creative In Our Pajamas, book reviews (here’s my eBook reviewed by PJ!), and so much more. Do yourself a favour and check out the site. There’ll definitely be something there for you!
3. JessCFS.Blogspot.com
Jess’ open and honest writing is something I always enjoy reading. She has a great ability to capture the reader’s interest very quickly and sustain that interest to the end. Her extremely insightful and useful blogs, including this insightful, open and honest one written as a letter to the “ME/CFS newbie” which gives great advice about how to deal with just being diagnosed with CFS. And the brilliant A Letter To Doctors From The Chronically Ill, is a must-read (in response to an awesome blog written a number of years ago by a Dr Rob Lambert, titled, A Letter To Patients with Chronic Disease” From A Doctor.) Jess’ recent post on A Patient’s Guide To Pacing is also a must-read.
4. Green Girl Fights Fatigue
Admittedly this blog is an older blog that hasn’t had regular updates until recently, but I really like the way Mel writes and the amount of great content/resources she has on her site. Mel stopped writing regularly once you went back to full-time work (and substantially recovered from CFS), but she has recently started to blog again. One of her recent posts is an interesting one called My CFS Anxiety Hangover which examines her continuing fears of having a relapse. I think many of us can relate to this on some level.
Another blog post I love of hers was written ages ago, but is evergreen content (no pun intended) about How I Apply Permaculture Philosophy to my CFS/ME Recovery. Mel has a great free eBook available called 10 Ways To Support Friends & Family with CFS/ME/FM, and her Links pages are full of a huge amount of great resources.
5. LiveWithCFS.Blogspot.com.au
Sue writes some really interesting blogs about her life with CFS / ME, and the fact that her two teenage sons also have the illness makes for even more interesting reading. Recent blogs such as Bitterness, Resentment & Forgiveness, and I Used To Have A Social Life … are ones I think we all can relate to. I also found the post on Manual Physical Therapy (and the research articles it links to) very interesting. All in all Sue’s blog is well worth checking out.
There are hundreds, if not thousands, of blogs out there about living with CFS, but I wanted to keep this post simple and give you a taste of some good ones to start you off. For a great list of many ME / CFS / CFIDS and Fibromyalgia blogs, check out mecfsblogroll.blogspot.com.au.
Let me know in the comments section or on our Facebook page which CFS blogs are YOUR favourites! I’d love to hear from you. Maybe then I could make a Top 50 :-).
Keep Smiling
Louise
Louise@GetUpAndGoGuru.com
* Any reference to “spoonies” or “spoonie” comes from the article “Spoon Theory” by Christine Miserandino which is a brilliant blog for all people with CFS / ME to read (and their family and friends!)
Moth says
I found Green Girl Fights Fatigue in the early days of my illness and found it so valuable, Mel is great! I look forward to reading the others, just making a start on NoPosterGirl now…
thanks for the list 🙂
Louise Bibby says
Yes Mel’s blog was always so good. I haven’t checked recently whether she’s posted any more. Thankfully it seems she’s now well again, which gives us all hope! 🙂
The other blogs are great – and I could now add another 20 or so to that. I must do another list in the New Year. Maybe it should be a Top 50 next time!
Enjoy the rest of the blogs, and please keep in touch and watch for my new blog posts and check out the archives (I’m now up to 100+ posts!!)
Wishing you a festive season where you can enjoy it as much as possible. Always a challenge with chronic illness, but I do hope you have some happy times.
Keep Smiling
Louise
Graham says
Hey Louise. Well my favourite is mine; I believe that the key to recovering is learning to deal with the repressed emotions, principally anger/rage, which overwhelmed my nervous system in the first place. Expressing these messy feelings, and encouraging others to do the same, is what I do on my blog. Cheers, Graham
Louise Bibby says
Great to hear from you Graham. Sorry about the tardy response. I’ve been juggling a few other things and have missed a few recent comments. I’m so pleased you have found a key to your recovery. I definitely believe emotions, and especially repressed emotions, can play a huge part in any illness. Dealing with various emotional issues has certainly helped many of my symptoms, although I wouldn’t say I ever really had any true rage symptoms (or any major traumas in my background). I’d probably associate the original persistence of my illness as being due to my strong Type A personality that led me to push on when I should have just rested. And even when I WAS resting, my mind wasn’t!! This definitely didn’t allow my CNS to rest as it needed to. It’s definitely something I still manage day to day, especially since I also have severe Electrosensitivity (last 13 years since pregnancy), which is a CNS condition.
I’ll be really interested to have a read of your blog. I often don’t find time to read enough of other people’s blogs as I’ve always got many projects on the go – and one of them is my health management! I’m actually putting together a range of Spoonie Warriors Guides / CFS/ME Warriors Guides on certain topics. If you’re interested in being part of those, I’ll have a look on your blog to see if any of your posts fit the categories. Please feel free to contact me directly at any time – louise@getupandgoguru.com
Cheers
Louise
nbruyneel says
Thank you for sharing these, only found your blog now, but will be doing some reading. I’ve only recently started to blog and find it a good way to write down feelings and deal with CFS in a positive way!
idleamy says
https://idleamy.wordpress.com
I have CFS, I’m 19 and very keen to blow off my frustrations with the illness through writing about it! – if you fancy giving my blog a read click on the link above!
Michael says
Thank you for putting this together. I’m also writing a blog on cfs, and it’s inspirational to see people that have been successful. I’ve linked this as a resource on my blog
https://cfsishell.com/wp/index.php/resources/
https://cfsishell.com/