When the National Academy of Medicine (NAM, formerly the Institute of Medicine/IOM) released its recommendations for Systemic Exertion Intolerance Disease (SEID) as a replacement for “ME/CFS,” I saw a lot of people spreading this myth: That “post exertional malaise” (PEM) is what differentiates myalgic encephalomyelitis (M.E.) from other illnesses. This is not true, nor is this what’s explained in the NAM’s report. At most, the report says that the presence of PEM helps distinguish it from other conditions, while it is what best distinguishes “ME/CFS” from idiopathic chronic fatigue. PEM alone is not specific to M.E., Chronic fatigue syndrome (CFS), or SEID, just like unrefreshing sleep is not specific to any one disease. Continue reading “The Parts of ME: Does “Post Exertional Malaise (PEM)” exist in other diseases?”
After almost seven years with this infection, I think the bartonella may be gone for good.
If you recall from this previous post, I talked about how my health was either about to nosedive or finally overthrow this infection thanks to the millions of antibodies I now get infused into my body every four weeks (certainly many of which are bartonella antibodies, since this bacteria is so common)… Guess which one happened?
Since April, I’ve been having none–none–of those symptoms I talked about eight months ago.
My favourite part of this (aside from the “won’t have bartonella-induced damage as a possible cause of death” thing, of course) is that I finally have my personality back, without a lapse every five or six days. I am emotionally stable! I also think that toxoplasmosis may have been playing a far greater role than my doctors originally thought, because my level of extraversion is also completely gone and I am now a solid INFJ instead of the ambivert I’d been for most of my life… But that’s a topic for another day.
As I said the first time the bartonella was painstakingly beaten into remission, it’s been known to relapse, sometimes even up to 15 years later. But for right now? It’s over.
It’s over it’s over it’s over.
And now, to elaborate on all the things that IVIG has done and is doing: Continue reading “IVIG can help eradicate Bartonella infection: My success thus far.”
Here are some of the changes I’ve made within the last.. wow, has all this really only happened within the last two months?
- Exchanged everything I use on my body for an eco-friendly, recyclable, sustainable, chemical-free and usually organic version. (With the help of Amazon Prime, if you’re wondering.) That’s organic and chemical-free shampoo, conditioner, body lotion, deodorant, powder, lip balm, sunscreen, toothpaste, facial wash, and soaps.
- Exchanged household items for eco-friendly, recyclable, sustainable, chemical-free versions, that don’t harm the environment. Like dish washing materials, laundry detergent, fabric softener, household cleaners, paper towels, bathroom tissue, facial tissue, drain cleaning, and even tape.
- Sent everything I had to get rid of to TerraCycle, which offers free recycling programs “for previously non-recyclable, or difficult-to-recycle, waste.” This includes unwanted beauty products, foil-lined granola wrappers, water filters, even cigarette butts and ashes; i.e. lots of things you can’t put in your recycle bin. And they even pay you to ship it to them! Continue reading ““When conditions are sufficient, things manifest.””
Every time I go to write about something I’ve learned, I’m confronted with the realization that my writing about it won’t actually matter to anyone who isn’t ready to hear it. So maybe I’ll write about that, instead.
You can’t give people anything that might improve their life until they’re ready for change. You can’t show people there’s a cliff up ahead if they refuse to look down. You can’t help people discover anything they don’t want to see. You can’t convince anyone the truth will be easier to deal with if they’re attached to a lie. You can’t help anyone, unless they want to be helped. Continue reading “Help Unwanted, Motivation Optional”
- Click on the chart for the full-size version, as your browser may have resized the one below.
- If you’d like an extra large version (say, for special eyes), click here.
- To download as a PDF file (which I optimized for printing), click here.
- For Facebook upload only: download this special Facebook size of the graphic, because Facebook has annoying rules about photo dimensions.
- On Twitter? Click here now to Retweet/Quote/etc. the graphic
- If you try to share the image anywhere else and it uploads blurry, link to the direct image.
I’m not used to living this kind of life… It’s so different from what I was supposed to have, so different from what I was used to…
I barely see anyone. I barely go anywhere. I have no local friends and I think I’ve permanently lost my ability to drive. Disease puts me in bed an average of 23 hours per day, or at least to some area where I can lean back and my legs are propped up to ensure proper circulation. When you tell people these things, they immediately pity you and interpret it as a bad kind of life, or a sad kind of life, “oh you poor thing…” But Continue reading “A Very Special Way of Life”
Throughout this series, but especially in this part, I only ask you to remain open. But what does that mean? To quote Thich Nhat Hanh: “Usually when we hear or read something new, we just compare it to our own ideas. If it is the same, we accept it and say it is correct; if it is not, we say it is incorrect. In either case, we learn nothing.” So by being open, we agree to allow the information in and integrate it with the use of our intelligence instead of thoughtless reaction.
It takes a long time for me to integrate new information.
And as anyone in the ME community knows, we’ve had a ton of that since February. Instead of blindly powering through, waiting has given me a month to gather facts, opinions, and input from our advocacy leaders, my trusted friends, and even the IOM committee members. The best way for me to write and for you to read (that is, if you want) is to break it into parts.
Please note that each post will be able to stand on its own: Don’t fret about having to remember plot-lines from week to week; this is not a story. This is definitely. not. a story.
All right. Fasten your seat-belts, gather your friends, because here we go. It’s time to make some sense out of all this.
The Parts of M.E. (Upcoming posts)
Introduction & History: How did we get here?
The IOM Committee Speaks Out
The Problem with M.E.-only Advocacy, and How SEID May Help
Does encephalomyelitis really exist in Myalgic Encephalomyelitis (ME)?
The ICC or CCC as an M.E. definition: Are we promoting bad science?
Why do we advocate?
Here are some things I used to think about people who tried to tell me chronic fatigue syndrome (CFS) was different from myalgic encephalomyelitis (ME):
- They’re just trying to cause a problem where there isn’t one.
- They’re “those advocacy-type people” who “make a big deal out of everything.”
- They just want it to sound more serious, when it’s actually the same illness.
- It really doesn’t matter what people call it; they just want their disease to be “special.”
Yes, I *legitimately used to think these things.*
Have you ever wondered why people continue using terms like “ME/CFS” “CFIDS/ME” (and now “ME/SEID”), despite being confronted with information that clearly details their differences? Ever wanted to inform someone you care about, but aren’t sure how? Continue reading “Explaining to Those with “ME/CFS” That They Cannot Have Both”
“Education is an admirable thing, but it is well to remember from time to time that nothing that is worth knowing can be taught.” (Oscar Wilde)
When I look back at all that I’ve done over the past year, it really blows my mind. And I did it all because I first made the choice to live and enjoy within the confines of my circumstances, just like I did last year. I set in my mind what I wanted, made whatever arrangements I could on my own to help them manifest, and let the Universe work out the rest based on what I needed to experience.
If I wasn’t supposed to have something yet (or at all), well it wouldn’t have been from my lack of trying.
I’m not completely certain of the point for me writing this… I know the things I lived, I don’t need further documentation. I don’t imagine they’d be all that interesting to anyone else, in the same way your baby photos are only important to you, and slide shows of your vacations need to be ambushed upon unsuspecting house guests if you plan to share them.
Even if I were to sit here and explain how none of it would have happened if I just blindly accepted the identity of “sick person” that most family members and even doctors wanted to give me (and that for too many years I gave to myself, as well)… “Sick people” don’t live life, they wait until they’re not so sick anymore to start enjoying themselves again, right? They wait until they’re better, don’t they…? (Not so much.) Continue reading “It’s not easy, it’s just Now.”