My Kingdom Of ME And A Print Giveaway!

Myalgic Encephalomyelitis is a devastating, awful disease. In the US we have to live with labels like fibromyalgia and chronic fatigue syndrome, those dreaded wastebasket diseases that lack distinction or consensus between medical professionals. My doctors over the last three years cannot agree on what I have, what came first, but mine started with a wicked fever after a car accident during a very high stress period in my life. The fever lasted weeks and then when it died back after that initial attack, it stayed on with me at a low grade for years. If I have ME, I want to know. I certainly fit that diagnosis after all my research much more than I fit fibro. My current flare has lasted three and a half weeks, from a period of ten days where I left the house three times and overdid it badly on two of those trips. I’m nowhere near back to where I was before those ten days. I don’t know when I will be.
I do know that I am sick and tired of living in a body that restricts my every action and exertion, be it physical or mental, and sensory overload is a big deal too. Everyone with ME deserves to have their condition recognized, diagnosed, and to understand what it going on with them, why graduated exercise isn’t working, why pushing through just stopped being a possibility.
We need more research, more treatments, with less shame and stigma. We need a cure. May 12th is a BIG DEAL, and here is why:

Mythic Pictures

The Blue Ribbon © Sarah Allegra, Model: Katie Johnson.  ME's awareness ribbon color is blue. The Blue Ribbon © Sarah Allegra, Model: Katie Johnson. ME’s awareness ribbon color is blue.

May 12th – what is it?

We are rapidly approaching May 12th.

Why is that important?

May 12th is recognized across the globe as Invisible Illness Day.  Though most people are unaware of its significance… which is part of the problem.

It’s a day for bringing more awareness to diseases like fibromyalgia, Chronic Fatigue Syndrome,  rheumatoid arthritis, Lyme disease, lupus, multiple sclerosis and Crohn’s Disease, along with many others.  Diseases which can have horrific, devastating effects on the person’s life, yet may not outwardly show.  They can be completely disabling, and the patient still looks “normal” to the world.

And of course, this list includes myalgic encephalomyelitis, or ME, which I have.*

What ME is –

I’ve spokenquite a lotabout MEon my blog, so a lot of you probably know the…

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About Jessi Finds Out Fibro

Hi, and thank you for finding your way to my corner of the web! I'm on a journey to empower myself and hopefully others through shared courage and compassion. I write Finding Out Fibro, a chronic illness and chronic pain awareness blog that is not just about fibromyalgia, as well as a new project making jewelry under the Etsy name Hopeful Spoon. Please check out the shop and share if you can! Thank you for your support! My other hobbies include defeating ableism anywhere I find it, upcycling old junk into funky awesomeness, raising my voice to erase stigma against invisible illness and mental illness, baking, collecting vintage kitchen ware, sharing body-positive messages, playing around in photoshop, abstract painting (especially in neons and metallics!), advocating for those living with chronic illnesses and mental health challenges, seeking safety and upholding visibility for LGBTQIA individuals living with physical and mental disabilities, researching and testing plant-based remedies for chronic pain, and spending all my spare spoons in my veggie garden. This is my opportunity to do more than just survive with chronic illness. This is me learning how to live well, even though there is no cure for the war my body is waging on me.

2 responses to “My Kingdom Of ME And A Print Giveaway!”

  1. sarahallegra says :

    Thanks for sharing this! And of course that gets you an extra entry into the giveaway 🙂 I love what you said at the beginning! My diagnosis for ME was self-made; I think that’s true for about 90% of ME people in the US. It’s just a matter of looking at the definitions and deciding if you have it or not. I like the International Consensus Criteria best – they divide it up into needing one symptom from column A, two from B, etc. Very easy to self-diagnose! The fibro/CFS criteria are so vague and ridiculous, they’re not the least bit helpful anymore.

    Liked by 1 person

    • Jessi Finds Out Fibro says :

      Thank you! I need something to bring to my doctor. She’s a fibro specialist, so of course to her I have fibro. She agrees that something else is wrong though, but we can’t figure out what with a fifteen minute meeting every three-six months. You know that one, I’m sure. And when I asked her about ME/SEID/CFS she said she “liked chronic fatigue because it accurately explains the disease” which left me feeling so damn hopeless. Like I shouldn’t push the subject at all, but to be diagnosed with both CFS and fibro and to still be looking for what else is going on? Tests like my SED rate indicate I have something odd going on, and in another country that would warrant a second look, but in the US a low SED rate isn’t officially tied to any illness, and neither is adrenal fatigue, or childhood high blood pressure etc. None of my tests that are abnormal are conclusive of any one illness. Just a vague autoimmune issue that is lurking just out of reach of diagnosis. I’m afraid to self-diagnose any more, but damn it, I do want answers, I do want an explanation for why graduated exercise sends me into a tailspin that can last months.
      I walked into a pain center at a local teaching hospital, said my aunt had suggested I might have fibro and I wanted to get that checked out and she literally just poked me a few times and said “yep, you probably have fibro” and that was it, nothing happened afterwards, I had to look online in my charts to see that I had been officially diagnosed with it, and I was basically left to figure everything out on my own. It took me months to realize that fibro was not just pain, that it did kind of explain the other stuff that I was trying to hide still. But it certainly does not explain everything. I agree being diagnosed with either CFS or FMS is hardly helpful at all, and it definitely detracts from MD’s looking any further into my case for a more tangible root cause. The fact that this basically happened overnight is crazy. Even having EDS doesn’t explain away everything, but that’s a tough diagnosis and plenty vague too. I’m off to check out the ICC for ME, thank you so much for that tip. And thank you for writing such a wonderfully comprehensive post to share, it would have taken me days and days to put all that information together! I’m sure you put a lot of effort into it, and I really loved your video too. Sometimes those last minute ideas are the best ones, and I don’t think you could have picked a better representation of your kingdom.
      this giveaway is the first one I have ever been excited about on the internet. I can’t wait to see the new print that has crashed your computer on a regular basis for so long!
      extra love and spoons to you my dear!

      Like

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