Check out @JSchling’s Tweet: https://twitter.com/JSchling/status/947156447942598656?s=09
Expanded from the original article by Dr Robert Bransfield written earlier this year.
Finally, this epidemic within a pandemic is being recognized.
The first few years of my illness, my cats, my mom, and my faith (in different orders and combinations), got me through the rough patches. For a time I also belonged to an online Lyme group devoted to patients who were having suicidal thoughts (I’ve never known anyone admit to being homicidal). There were nights I’ve stayed up late talking to someone in crisis and times I had to tune others out to take care of myself.
I’ve lost two Facebook friends to suicide. I can’t imagine what they experienced that tipped them over the edge. It’s time the suffering this disease causes is noticed and taken seriously.
What I would like to say…
“There are many photos I wish I could post about my condition. I want people to understand what it’s like to be chronically ill – to have deep fatigue, brain fog, aches, pains, depression, and a myriad of other symptoms that you have to push aside each day. I put on a smile to hide my weariness that words can’t really describe.
So, The Wizard of Oz and Lyme…….
Say what? Ok, just work with me here…..
Lyme bacteria can enter every single system in the body. Every. Single. System.
This summer, I’ve been experiencing some really great days, in a row!!!, and then I’ve also experiencing symptoms that come and go, day to day, and sometimes, hour to hour. I think I’m noticing it more because I am off of work right now. I’m not sure.
I’ve been wracking my brain to think of a way to explain the comings and goings of the myriad of symptoms. There really isn’t a good analogy. Not one that is really accurate nor one that people can relate to, at least not one I’ve thought of!
But I woke up the other morning so freaking stiff I could barely get out of bed. For reals. And I thought, man, I need some of that…
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Though I was not a writer, I mourn who I was. Bad day today. Thank you, mom, for sending me this article, it helped balance me this morning.
“I have not yet learned anything except that I don’t want this, but also that I am this—I am illness just as much as woman, wife, friend, daughter, guardian of two mutts. And because, right now, I am illness—because I have not, as other people promise I will, learned to have a malady rather than be one—it is all I can manage to write about. I am a body in every moment, and my body is all I can think about….
“Pain makes us absolutely self-centered, not in the malignant way of a narcissist, but in the inevitable way of an infant. Pain refuses to allow us to forget our bodies or to amputate them from our selves. Pain’s shrill cry will rise up, louder and louder, if we try to shut it out. Now, I often marvel that anyone is alive at all. There are so many things that can go wrong.”
Please read the full essay: http://lithub.com/i-used-to-be-a-writer-then-i-got-sick/
I’m going to attempt to share my YouCaring.com update here…
If everyone who visited this post donated a dollar, I would be able to pay my overdue and upcoming medical bills.
I’m so befuddled by this an drowning, I’m starting to get a migraine.