Hi there, and welcome to No Poster Girl. I’m Jocelyn. You may remember me from my food blog She Spills the Beans, or my long-running LiveJournal, but that was friends-locked and read by about a dozen people, really.
My intention here is to write openly and honestly about what my life is like now, with severe ME/CFS. I developed the illness in 2004 and I’ve been bedridden since December 2007.
I’m not cooking these days; I’m not working any more, either; I’m lying around all day eating bonbons. Well, not strictly bonbons, mostly dark chocolate, and not strictly all day, mostly for breakfast. But I am strictly lying around, because my cardiac output is too low to allow me to stand up like a normal person. Ever have all the blood in your body in your feet? It doesn’t feel so good.
Anyhow, I figure I might as well be forthcoming about what it’s like to have severe ME/CFS. What do I have to lose, except for, uh, my health insurance coverage and my SSDI payments?
But really, what else?
Want to know more about the blog’s name? Here you are: Why I’m No Poster Girl. Curious about how my illness started? Check out my How it Began series.
No Poster Girl 
Would somehow including CFS/ME in the Blog title give you more visibility / search engine hits? Would increased visibility be a good or bad thing given your motivation for this startup?
No need, really. Visibility, for Google, is more a matter of how many other sites you’re connected to and their prominence, as I understand it. In the coming days, I’m going to put together a blogroll (list of other ME/CFS blogs) for the sidebar and make some comments to entries on other ME/CFS sites over time. It’s not that large a community, and doing that sort of thing is what gets you links and readers.
Hi! Just saying “Hi.” I just started my own CFIDS blog, and came across yours on the bloggerama facebook page. I thought we could LINK UP! Thank you for writing about your experience and spreading a little hope & community.
Lee
Thanks, Lee! I’ve bookmarked you, and a blogroll is the next thing on my agenda after I finish with the post I’m currently writing. Slow going; I’m sure you understand. I see that you were vegan! I’ve been vegetarian for 20 years – one of them vegan – obviously it didn’t take. I also see that you fell ill in 2004. So did I – in the spring. May 29. I’m eventually going to go back and do a story-of-the-illness post like yours, too. Good for you for staying within your limits at this point; that’s one thing I wish somebody’d told me when I started. Like you, I just thought my body would get better, because it always had. And here we are. Anyway, will enjoy seeing what else you have to say!
I love to see you writing again…I have missed it.
I want you to know we think of you often. Ferdi says hello.
Much love from our hearts to your!
We miss you folks too, Syn-D. Am enjoying reading your poetry. Thanks.
Hello, thank you for your lovely comment on my blog. One of my best friends saw my blog post and asked if she could wear my necklace and earrings for her wedding next year. That’s her something borrowed sorted! I have M.E. too and just wanted to say hello and send hugs (gentle ones). I started blogging as a way of connecting with people and creating a life for myself that was different than the life I had before, but that was interesting and put me in touch with other like-minded people. I write about the things I’ve made and things that have made me smile, and I love the new friends I have made. And I see you havbe a black cat just like me! Take care Jocelyn, I look forward to reading your blog. xxx
Oh, excellent! You’re a good friend to lend them. I am enjoying checking out your writing (and crafting). Thanks for dropping by. And yes, that is Bootsy Collins! He was born under our neighbor’s shed. We have another black cat, Mingus, who I found in a storm drain in 1997 with his siblings and mother. We also have his black-and-white brother Coltrane. There are nine cats among the three houses on our end of the street, and seven of the cats are black!
Hi Jocelyn,
congrats on starting your blog!
Great writing, great sense of humour, I already know I’ll be a regular on here!
Much love from another bedbound in Germany,
Nina
Thanks, Nina! Hope to see you again soon, and sorry to hear you’re also severely affected.
Hi,
I am also a sufferer of CFS. I am a Reiki healer and it has helped to prevent me being bed-ridden. If you like I can distant attune you to Reiki and send you instructions on how to use it for yourself. I you are too tired you can just put your hands on your body and some of the energy will go through. Dawn x
Hi Dawn! Glad to hear you’ve had such success with Reiki. I had a friend who was into it who tried it in my case. It didn’t seem to do anything for me, sadly.
Are you in NYC? Who is your doc?
Nope, I’m in southwest Pennsylvania. We go down to Asheville once a year to see Dr. Cheney.
Hi Jocelyn! I have been directed here through freshly pressed.
I know your blog is in a large part about how ME/CFS has affected your life and thoughts. but I just wanna say one thing, “You’re gorgeous!”
🙂
Aw, thanks, another journey. I can’t claim any credit there – just an accident of birth.
Stumbled here thanks to Freshly Pressed, and it seems like you have quite the window on a little-known illness. Looking forward to reading some more 🙂
Thanks for dropping by and spending some time, inukshuk!
Hi! This is the first time I encountered your blog and I must say, I enjoyed reading your most current post. I’ll explore more throughout the days. I think that you have a very pretty photo here! =>
Thank you very much, A Gracious Life! A good friend who is an excellent photographer did that for me…we just got lucky that one of my cats wandered in at precisely the right moment. 🙂
Hello from the UK :-). I stumbled on your blog while looking for others with M.E.; I have suffered with it for 22 years, and it doesn’t seem to get any easier. I am really enjoying your blog. Thanks for sharing so candidly.
Welcome, Vicky! Wow – you are a real veteran. Sorry to hear it. There is an enormous UK ME/CFS community on Twitter. Check out my Twitter page, linked above, and look at who I’m following. You’ll find lots of UK folk there.
Thank you! I sure will.
Happy to help! If you can figure out how to do this, you might consider turning on the option to offer an RSS feed of your blog – I use Google Reader to keep up with all the ME/CFS blogs I follow – puts them all in one place.
Jocelyn, thank you so much for sharing your story. I’ve been reading and watching much on ME/CFS because I was just diagnosed with it last week. Interestingly enough, mine struck on Memorial weekend too, but in 2011. I had the anxiety, the muscle weakness (I ran a home daycare and noticed trouble lifting the kids), tremors, concentration problems, and the month before being bedridden, I had that strange syncope thing you talked about. Thanks for explaining that cause no doctor ever has. In early 2012, I learned about juicing, supplements and even got rid of my very expensive memory foam mattress (environmental toxin) which I believe has helped me get where I am today. I still struggle, though. Just this past weekend, my body said, “No, stay in bed. Let everyone else handle the chores and meals.” So I did. I’m still taking it easy because……well, you know. Oh and I almost forgot, I too had a vaccination before becoming ill in early 2011, for pneumonia. I didn’t have the kind of reaction you did, but the pain lasted a lot longer than previous shots that I remembered. And with this one I had fatigue in that arm; something I had not had before either. Oh and I live in Fresno, CA. Kind of makes you wonder, doesn’t it. Thanks again for your bravery and keep on keeping on!
Thanks for saying hello, Sylvia! Sorry to hear of your diagnosis. Glad you’re finding some ways to aid your symptoms and can focus on taking it easy – I hope that will continue to be helpful to you. Where in Fresno do you live? We lived at First and Barstow.
Heya great blog. interesting re vips. if you google vips don staines and sonya marshell gradisnik youll find HEAPS of stuff. don thinks vips might be key, they also amongst heaps of other stuff are impoertant players in the cAMP mitochondial process.. related some lhow toba messanger somehing or other they produce called AC or adrenalate cyclase(i think). Don staines wrote a book about it- sorry my brains going backwards too – i imagine.
Best of luck from ozland.
I have given you a “shout out” on my blog – my version of a Liebster award because I can’t afford to expend the energy writing or answering questions. If you want to pay it forward, please highlight 10 bloggers on your blog. If you’d like to participate even further, you can come up with 10 questions for them to answer and/or answer the questions posed by Jess or Marie (linked on my blog: http://elizabethmilo.com/2013/11/10/award-season/). Mostly, I wanted to say thank you for your incredible, inspiring and detailed writing. I relish every post and am so grateful that you have shared your knowledge and your story.
Hi Jocelyn, I’ve nominated you for the ‘Unique Leaves Award’. Congratulations, you can view the nomination here: http://mychroniclifejourney.wordpress.com/2013/11/15/unique-leaves-are-falling-here/
Are you on med to treat POTS/OI?…it sounds like a major issue in your case (and many w/ ME/CFS…it is a factor for me).
Hi Jane, you should check out mast cell and EDS if you have CFS and POTS. A good resource is http://www.prettyill.com
Hi Jocelyn.
Curious if you’re still reading these comments.
I kind of rediscovered your blog after many years due to your blog about oxygen and Dr. Cheney.
I’m editor-on-chief of the ME Global Chronicle and wanted to ask you if we could include blogs of you in the magazine, which is being published every 3 months. Here’s the link to it: https://mecentraal.wordpress.com/me-chronicle/
Best wishes for a joyful Easter, as far as circumstances allow,
Rob Wijbenga
The Netherlands
Greetings, Rob. I am still reading the comments. I’ve been away from the blog for a long while. I would be interested in being included in what you aggregate in the magazine, but in case this is a deal-breaker, I will say I’m not willing to have my last nameconnected to the blog for personal safety reasons. A joyful Easter to you as well, if that’s on your agenda to celebrate.