No Poster Girl. Life With Severe ME/CFS: A bed-lyin', pill-poppin', muscle-wastin' good time.
July 7, 2011 7:22 AM Subscribe
No Poster Girl. Life With Severe ME/CFS: A bed-lyin', pill-poppin', muscle-wastin' good time.
I developed myalgic encephalomyelitis/chronic fatigue syndrome in 2004, and I've been bedridden because of it since 2007. Having gotten a little bit of improvement in the last year or so from the intensive attention of a prominent specialist, I've been able to be online more. And with that, I realized that though I interact frequently with friends via social networking, almost nobody outside my family and very close friends knew what the disease had done to me - or much about it in general. I didn't like that that was the case, and so No Poster Girl was born.
My incapacity is such that I'm unable to sit up or type for more than a few minutes, so I write my entries in dribs and drabs while lying on my left side. Also, part of the illness is that I have a greatly diminished ability to deal with stress, so please be kind, and if you don't believe ME/CFS exists, please keep that to yourself. Thanks.
I developed myalgic encephalomyelitis/chronic fatigue syndrome in 2004, and I've been bedridden because of it since 2007. Having gotten a little bit of improvement in the last year or so from the intensive attention of a prominent specialist, I've been able to be online more. And with that, I realized that though I interact frequently with friends via social networking, almost nobody outside my family and very close friends knew what the disease had done to me - or much about it in general. I didn't like that that was the case, and so No Poster Girl was born.
My incapacity is such that I'm unable to sit up or type for more than a few minutes, so I write my entries in dribs and drabs while lying on my left side. Also, part of the illness is that I have a greatly diminished ability to deal with stress, so please be kind, and if you don't believe ME/CFS exists, please keep that to yourself. Thanks.
Role: blogger
Thanks for the kind words, jessamyn! It's much appreciated.
posted by jocelmeow at 6:52 PM on July 9, 2011
posted by jocelmeow at 6:52 PM on July 9, 2011
As someone who's looking to go to medical school, and who is fascinated by patient narratives of illness, your blog is pretty much my jackpot. Thank you for writing!
posted by ocherdraco at 1:17 AM on July 11, 2011
posted by ocherdraco at 1:17 AM on July 11, 2011
I haven't read any posts beyond the intro, but have you tried an iphone or ipad for single hand typing? I find I can write a few paragraphs ok with one thumb on an iphone when bedridden.
posted by mathowie at 12:49 PM on July 11, 2011
posted by mathowie at 12:49 PM on July 11, 2011
Thanks, ocherdraco! Matt, I've tried my stepdad's iPad and found just too heavy to manage comfortably. The laptop I use I have on a table pulled up to the couch, and that really works quite well, as it's on precisely the right level. I don't have to hold it, nor hold my head up in order to use it.
posted by jocelmeow at 6:39 PM on July 11, 2011
posted by jocelmeow at 6:39 PM on July 11, 2011
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posted by jessamyn at 3:30 PM on July 9, 2011