**Disclaimer**I wrote this last week when I was at the apex of one of the worst pain flare-ups I’ve ever had. But I took my meds and got my pain down, and checked in with all my support people, and I’m doing much better now.  So please don’t worry that I’m about to hurt myself, because I am OK. This is just what it feels like to be in that moment.**

Right this very minute there’s a bird singing outside my office window, and I wish to God that it would Just. Shut. Up.

I don’t hate birds; I suffer with a chronic illness. I have fibromyalgia which, among other things, is a chronic pain disorder that takes even the sweetest, gentlest sensory input and turns it into unbearable physical agony, as if your nervous system is constantly being struck by lightning

In addition to the crippling pain, debilitating fatigue, and the need to take so much medication that God only knows what your insides look like by now, this illness also steals away your ability to savor and enjoy your experience of your life.

So maybe it’s not my nervous system’s reaction to birdsong that hurts so much. Maybe it’s that I can’t remember the last time I wanted to sing.

I usually keep these feelings to myself, because I’m afraid to let other people know how dark a place I’m in when I’m in excruciating, never-ending pain.

I can admit it to myself. Being sick like this means that I spend a lot-maybe most-of my time alone with The Demon of The Truth.

I know, down to the marrow in my bones, what it’s like to get up every damn day and choose to show up for this raw, unvarnished, ugly life. I know what it is like to put one bare foot in front of another, navigating the razor’s edge of existence. I know, more than most people, what it really means to choose life. And it ain’t pretty.

My normal reaction is to protect those around me from knowing these things, but not today.

Today I am suffering. And that is what I need you to know.

… when you start searching for a slingshot  to cast stones at the birds outside your window for “being too happy”.

…you’re doing today’s Bible study homework, and you burst into tears because the author is making you look up verses in both the Old and New Testaments.

…you’ve been in so much pain for so many days in a row that you’ve lost your mind, and therefore think it is *totally* appropriate to do a workout video that contains the word “Bootcamp” in the title.

1. Where Needles Should Never Go

Me: in a totally awkward and embarrassing position, about to get stuck and sliced for a biopsy in a place where needles should never go

Doctor: “OK, we’re gonna give you the Novocaine shot now. But it’s such a small needle you won’t even feel it. It won’t hurt at all.”

Me: “I have fibromyalgia: everything hurts.”

My husband (looking over me towards the doctor): “Oh, yeah, it’s tiny.”

Me: “Oh really? THEN WHY DON’T WE STICK IT IN ONE OF YOUR TESTICLES?!”

Doctor (without missing a beat): “Well, I’ll have to get a new needle first, because we practice safe needle usage here.”

Me: shot up with Novocaine

Me (grudgingly): “OK, you were right. That was only a little stick.”

Doctor: “Hm? Oh, good. At least you didn’t call me a little prick.”

Conclusions:

-biopsy came back fine

-WE LOVE THIS DOCTOR.  WE ARE TOTALLY KEEPING HIM.

2. You’re On Too Many Medications

Last week I had to go see my Primary Care Physician because I thought I had an ear infection. I didn’t, but my ears were blocked, so I ended up having to get my ears washed out with something called “The Elephant”. Which was weird. And gross. And kind of painful.

But before that happened, I of course had to list all the medications I’m taking to make sure his records were complete. And it is quite an impressive list.

“You’re on so many things that it’s making this old man nervous,” he said.

“Yeah, I know,” I said, “It makes me nervous too. Do you have any suggestions for how I could get off of some of them?”

“Well,” he said thoughtfully, looking at his notes, “I’d just eliminate this column right here. And then we’d take you up to the mountains, and tie you to a bedpost. And then you’d clear your lungs right out with all your screaming. And then…”

And then he proceeded to describe a truly heinous process which I can only refer to as White Knuckle Detoxing.

“Um, yeah,” I said, when he was done. “I’m not doing that. Any other suggestions?

“Well,” he said, “they used to use insulin shock to cure this.” (I wasn’t aware that “this”-taking a bunch of meds-was something that needed to be “cured”.)

“That sounds horrible,” I said.

“It was horrible. And they ended up killing a lot of people that way. But it worked like magic.”

“Uh, yeah, right up until THE PART WHERE YOU ARE DEAD!” I replied.

“Well, they finally figured out that eventually they needed to shoot you full of some insulin to bring you out of the coma (COMA!)”

“OK, NOT DOING THAT EITHER!”, I informed him. “So leaving those aside, do you actually have any suggestions for how I could stop taking some of these medicines?”

“No, not really,” he admitted.

Conclusions:

-This visit resulted in my declaring a new law in The Kingdom Of Jenny, namely that, Unless you have a specific suggestion that I can immediately try, you are not longer allowed to tell me that you think I’m on too many medications. Period.

[Read more…] about Some Recent Conversations With My Doctors

Dear Marianne:

I have been a big fan of yours ever since the first time  I went through A Course In Miracles eight years ago. I have your tapes. I read your books. I even listened to almost every single episode of your year-long radio show back in 2008.

So I was thrilled to see that your latest workshop was available to purchase, and I bought it right away.

Everything was going along swimmingly until I got to Part 3, until you said what you said about the person who was suffering with Bi-Polar disease (an area that I know a little something about myself, like the way that the Pope is a little bit interested in religion.)

I expected you to have words of kindness, and acceptance, and compassion. But instead you said this:

“…you just have to realize that [people who are sick, people who have illnesses] are stuck at the level of illusion. They believe in the power of the disease MORE than they believe in the possibility of being healed.”

Oh: and the part about how we shouldn’t be taking any medicines because we are “participating in the casual use of anti-depressants“? Unbelievably hurtful too.

It’s really easy to view the body as “just a suit of clothes” that’s not real when it’s working fine and you’re not in constant pain.

But that really doesn’t work when you spend every day, and sometimes every moment of every day, for days and days and days in a row in constant, agonizing pain. Physical, or mental, or both.

When your illness has taken you away from your friends and family, and given them back a seriously ill parent, child, or spouse instead.

When you know that everyone is so worried about you, but there’s nothing any of them can really do for you.

When you miss Thanksgiving, Christmas, baby showers, and your nephew’s first birthday. And you know that you’ll be missing even more things and disappointing even more people  in the future.

When you’re constantly faced with all the things that you used to be able to do, but that are just too hard for you now.

When you feel like you’re no longer  contributing meaningfully to life, and feel like a giant burden instead.

When you have no idea from one hour to the next what you will or won’t be able to do, or what your pain will be like.

When someone asks, “So what did you do today?”, and your only answer is that you pretty much spent all day, and every single ounce of your inner reserves just holding your shit together and getting through the day. And knowing that they will never comprehend what an enormous, unbelievably amazing, superhuman feat that really is. That this is what we, the chronically ill, do every single day. This is our job, even though you never get a paycheck or any professional accolades in this line of work.

When you finally get one problem managed, and then two more spring up out of nowhere.

And when all you can feel is guilt over all of these things.

So I really don’t need you to hold the goddamn space for me to be able to “rise above the level of the physical body, beyond what our senses tell us to what we know to be true.”

I need you to say, “I’m so sorry.”

I need you to say, “How can I help you feel a little more comfortable.”

You talk about living in the holy instant, in this moment RIGHT NOW.

Well guess what, honey?  THAT IS EXACTLY WHAT WE DO. All. Day. Long. Moment to moment. Breath by breath. Getting through.

We are not “stuck”.

We are not unenlightened.

We are not NOT trying hard enough to be better.

We are not part of a giant pharmaceutical conspiracy.

We. Are. Sick.

We. Are. In. Pain.

We are doing the very best we can. And our very best is pretty damn awesome.

So maybe, until you contract your chronic illness, or your mental health problem, or your constant, unrelenting pain that grinds you down to the bone and takes away the only life you’ve ever known, you could just stop talking about something you appear to know nothing about. And leave the interpretation of, and the meaning-making of, and the dealing with our illness to us.

Sincerely,

Jenny

 

http://youtu.be/z0ztg6jEJ64

Hey, everyone.

I know I haven’t been around here very much lately, and I hate that.

Unfortunately, one of my health things got severely out of whack, building up over a period of time until I finally realized what was happening and got some help. (Nothing scary, or life-threatening, or any kind of emergency. Just something I have to keep carefully balanced or else things get really funky.)

So I’ve seen the medical person I see for this stuff, and I’ve started a treatment, and it’s much much better already.

But unfortunately, I was out of commission for a while, and got to the point where I couldn’t really function. And it’s taking work to get back to being in a  good place with this. So my brain is pretty occupied. And exhausted. And more than a little fried.

Every time I think I have a fun idea for a blog post, it just dies, rather than blossom out into anything I want to write. I feel like my mind is a giant concrete block, or an engine that’s frozen up-not a lot of movement in there. And when there isn’t any movement, then  there aren’t really any words, either.

But I just wanted to say that I’m still here, and I will be back-I always am. It will probably just be quiet for a little while around here.

Thanks so much for sticking around 🙂

Jenny

(My husband and I,  on our way to pick up dinner.)

Me: “You know, I last had an appointment with my fibro doctor on June 23rd. And now it is July 28th, and I finally realized that I’ve been arguing with him in my head every single day since I last saw him.”

My husband: “About what?”

Me: “About trying to prove that he is wrong and I am right.”

My husband: “But I thought you had admitted that he was right about anti-inflammatories helping your pain.”

Me: “Well no, not about that. About other stuff.”

My husband: “Well, what then?”

Me: “Well, EVERYTHING.”

(Pause while my husband valiantly struggles to stay in his own lane despite his hysterical laughter.”

Me: “Yeah, I know. Some people fantasize about sex. I fantasize about being right.”