Here are some of the changes I’ve made within the last.. wow, has all this really only happened within the last two months? Continue reading
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
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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
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?
Does “Post Exertional Malaise (PEM)” exist in other diseases?
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
“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
♪ “Who is the betrayer, who’s the killer in the crowd?
The one who creeps in corridors and doesn’t make a sound.” ♫
All right. Something I never considered the IVIG would do (and luckily so, or else I might not have went forward with it!) was that it would so very obviously do the one thing I’ve avoided doing at all costs for the past two years: Wake up my immune system. Because that would re-activate the bartonella like it has every time in the past since I contracted this parasitic-bacteria.
And that’s exactly what it did. Continue reading
I make sure they take their medicine on time and I’ve helped them figure out what’s actually helpful so they won’t have to take any more than necessary. I’ve helped them find interesting pill cases to take off the mental stress of staring at a dozen pill bottles always by their bed, which I know they have to reach for multiple times a day. I listen to the extensive list of doctors everyone wants them to see, and help them figure out which appointments are really important Continue reading