You’re recovering from driving 17 hours over 2 days to spend 14 hours at a 2-day women’s conference, but you still had to call your husband so he could remind you that, “No, as a matter of fact you are NOT allowed to vacuum the entire house”, because your big fat lying fibromyalgia brain is insisting that not only is that a completely rational, but completely necessary, thing to do.

(Rest easy; this trip happened last summer. I only now re-discovered this post in my unpublished drafts folder.)

Put down your clever. Pick up your ordinary.

-Patti Digh

So I’ve started this post about a hundred different times in my head, putting more and more pressure on myself to create some kind of literary masterpiece instead of just writing about what’s been going on. Then I remembered this quote by Patti Digh, and I finally decided to get some words out of my head and onto my screen.

I have marked a number of milestones over the past 2 years that I do eventually want to write about:

-Fall 2017 was the 10-year anniversary of contracting The Hostile Alien Intestinal Bacteria, my tipping point into fibromyalgia. I also hit the midpoint of my 40s.

-November 2018 was the 10-year anniversary of my fibromyalgia diagnosis.

-June of 2019 was the 10-year anniversary of the birth of Cranky Fibro Girl.

But for now, I’m just going to stick with what cost me all of 2018. In a word: mania.

I’ve written a little bit here about being bipolar but that year it got triggered in a massive way, and it took me the whole year to recover.

Just a wee bit of background. In 2016 we moved back to North Carolina, near two of the state’s best medical schools. This has given me the chance to do a major upgrade on creating my medical team. The doctors I had in Atlanta were good, but the were just a jumble of random people to which I added someone new every time another medical crisis popped up. Now that I’m in one of these networks everyone is connected. All of my doctors have all of my medical information. And, most importantly, I’m now a patient at a pain clinic where everyone believes in the existence of fibromyalgia.

So at the beginning of last year, the P.A. that I see at the pain clinic and I decided to switch me off of a pain medicine I’d been taking for a long time and onto something new. And I was so excited to finally have something new to try after all these years of being sick.

Sadly, it did not help my pain. It did, however, trigger my bipolar disorder, and I went manic in a massive way.

I have Bipolar II, which I guess is sort of the “lesser” version of the disorder. So I don’t have blackouts, or secret second lives. I don’t go out and buy multiple new cars. I don’t have affairs.

My mania is more internally focused. For example, I’ll go into grandiose thinking and decide that I can make tons and tons of money by monetizing my blog, and then sign up for a lots of business classes. Or I’ll get hyper-focused on learning how to cook, so I’ll order piles of new cookbooks and sign up for an online cooking school. I’m happy to say that I no longer binge-eat or binge-spend like I used to. But my thoughts kept spinning more and more. They were racing more than they normally do, and getting more and more constricted. I started dissociating. I was anxious, and frantic, and frenetic.

I did not stop taking my medications. But I did ignore anyone who voiced any kind of concern-right up until I ended up in the emergency room, afraid I was having a heart attack.

Thankfully it was “just” mania and panic attacks. And thankfully I started listening to Lynne, and my P.A. and I immediately began tapering down the medication. But the process took a long, LONG time; all told I was on that medication from February to September. And those months were pretty miserable.

I couldn’t sit still. I couldn’t focus on anything for more than a few minutes, so I couldn’t follow a plot in a movie, TV show, or book. I lost my ability to do sequential tasks, like follow a recipe. I couldn’t hold a thought in my head for more than a minute or two. I was anxious, and restless, and twitchy all the time, and there was nothing, NOTHING I could do about it but endure it and move through it moment by moment. It was awful.

One of the only things that brought me any relief was to go outside and walk and walk and walk until I tired myself out and got a bit mental and emotional breathing room. I also discovered podcasts, which my fractured mind was able to focus on for short periods of time.

The mania did eventually run its course, leaving me with a pretty decent exercise habit which I’ve kept up over the past year. And 2019 turned out to be a pretty fantastic year.

Eventually I do want to write about All The Things, but for now let me just put down both my clever and my ordinary and hit “publish” for the first time in 2 years.

Thank you for being here with me.

I have decided to declare today A Day of Permission and Amnesty. I am giving myself permission to not have to create anything, and amnesty from guilt and self-flagellation over not having written or posted anything new here for the past couple of months.

What about you? What Permission or Amnesty do you need in order to support yourself today?

Here is a roundup of some of the posts I’ve written over the last few years to help articulate just what it’s like to live with this illness.

Cranky Fibro Girl And The Puzzle:

“Today is not like yesterday, because fibromyalgia is a puzzle, where all of the pieces are always in constant motion, and are always shape-shifting into something different and new.”

This Is What Having Fibromyalgia Feels Like:

“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.”

The Marathon:

“So tired of being in pain.

So tired of thinking about being in pain.

So tired of talking about how much I think about being in pain.

How many different ways can I say, “Hey-I hurt! And it really  *$@ing sucks!”

Why Pain-Free Days Aren’t Really All That “Free”:

“I have been having a few pain-free days lately (although I’m terrified to even write this, lest I jinx it somehow. It’s hard not to be superstitious when you’re living with something as unpredictable as a chronic illness). I’m very grateful, and very appreciative for these days, but I’ve stopped announcing them to the world at large, because people who aren’t sick just don’t get the fact that starting to feel good after m-a-n-y days of being in pain is just as difficult and disorienting as it is when you start to feel bad after a handful of days of feeling good. And when I try to explain to anyone else why I’m kind of weirded out by a feeling-good-day and don’t know what to do with it, as much as I know they want to help, I cannot “just enjoy it.”

Dear Lyrica Commercial: As A Real-Life Fibromyalgia Patient And Not Just An Actor Playing One On TV, I Have To Say That Your Commercials Are EXTREMELEY Misleading:

“But treating fibromyalgia is not like treating a sinus headache or strep throat, where the parameters of the illness are known and understood, there’s a standard treatment that clears up most cases, and there’s a predictable, linear improvement once the patient starts taking the necessary medication. Clear cause, clear treatment, clear effect.

Fibromyalgia on the other hand is a puzzle where the pieces are not only constantly moving, but also constantly changing size and shape. And speaking for myself and most of the fibro patients I know, there is no one thing that gets rid of all our pain. We’ve all had to develop an entire range of tools to deal with our illness.”

Aware:

“After about five years, give or take, my symptoms stabilized a bit. I’d learned enough about how fibro affected me, my body, and my capacity to be able to venture out in the world a little. From here I’ve been focusing my awareness on how to create a happy, thriving, everyday life while also living with chronic pain and illness. So it is from this place that I offer a few of the lessons I’ve learned over these past few years of being ill.”

I wish I had it in me right now to write a moving, inspirational, and deeply insightful post to mark today. Unfortunately, I’ve spent a significant portion of the past week lying on the floor, because sitting upright in a chair is too exhausting. So instead, I’ll post some links to various posts I’ve written over the past few years that are my attempts to help explain what it’s like to have fibromyalgia.

Hitting Me Right Between The Eyes

It’s Definitely A Sign That You Had A Really Bad Night

“Why Pain-Free Days Aren’t Really All That Free”

Cranky Fibro Girl And The Puzzle

This Is What Having Fibromyalgia Feels Like

The Marathon

Dear Lyrica Commercial: As A Real-Life Fibromyalgia Patient And Not Just An Actor Playing One On TV, I Have To Say That Your Commercials Are EXTREMELEY Misleading

Aware

When I was first diagnosed with fibromyalgia back in 2008 Lyrica had (I think) just become the first drug officially approved to treat it. At first I was so happy to see Lyrica commercials on TV, because I saw them as a sign that fibromyalgia was being validated as a real illness (people like my pain doctor notwithstanding). Plus, whenever anyone would ask me what fibro felt like I could say, “You know that commercial for Lyrica that shows the person’s entire body on fire? It feels exactly like that.”

But now that I’ve been taking Lyrica for over 7 years I find myself arguing with the TV every time I see those commercials. Here’s why.

If you take the commercials at face value, they would have you believe that the following is true:

But treating fibromyalgia is not like treating a sinus headache or strep throat, where the parameters of the illness are known and understood, there’s a standard treatment that clears up most cases, and there’s a predictable, linear improvement once the patient starts taking the necessary medication. Clear cause, clear treatment, clear effect.

Fibromyalgia on the other hand is a puzzle where the pieces are not only constantly moving, but also constantly changing size and shape. And speaking for myself and most of the fibro patients I know, there is no one thing that gets rid of all our pain. We’ve all had to develop an entire range of tools to deal with our illness. So that’s the first moving part.

Second, not all the tools work all of the time, or even work the same way from one day to the next. There’s a lot of throwing spaghetti at the wall and seeing what sticks. And what sticks changes from day to day; on really bad days, it can change from hour to hour, or even minute to minute.

Here are some examples of what’s in my toolbox:

-cardio (usually aerobic walking and recumbent bike)

-physical therapy exercises

-stretching/yoga

-meditation/visualization

-heating pad

-ice packs

-warm baths

-my TENS unit

-massage

-chiropractor

-sessions with Lynne

-cognitive behavioral therapy

-EFT (Emotional Freedom Technique, or “tapping”)

-writing

-anti-inflammatories (and constantly having to tweak the doses)

-non-narcotic painkillers (and constantly having to tweak the doses)

-narcotic painkillers (and constantly having to tweak the doses)

-epidurals and nerve ablations for my back

-mental health meds (and constantly having to tweak the doses)

-migraine and nausea meds (and constantly having to tweak the doses)

-my CPAP machine

-insomnia meds

Now, let me show you what it looks like to try and use these tools to manage my pain. Let’s take two hypothetical days, say Monday and Tuesday of the same week, and say that on both days my pain level is an 8.

Here’s the third moving part: even though my pain levels might be the same on subsequent days, I have no way of knowing what each 8 is made up of. It could be the same things. It could be a mixture of old and new reasons. The 8s might even be made up of completely different things. And I have no way of knowing which one is true. So I have no idea which tools are going to work. This is where the spaghetti-throwing begins.

Actually, a better metaphor might be that of building blocks. Because I am starting with tools that I know help me feel more comfortable. So every day I’m trying to build a tower of blocks made up of my pain management tools that equals the height of the tower made up of my pain level for that day.

This is the place where the puzzle pieces not only move, but change shape. So this is also the place where the Lyrica commercials are most misleading. And this is most DEFINITELY the place where opponents of narcotic painkillers get it wrong. BECAUSE NO ONE BLOCK GETS RID OF ALL OF OUR PAIN. So we do not spend our days just popping pain pills and zoning out. We spend our days trying to figure out what combination of blocks will bring us as much relief as possible for that particular day.

So let’s say that on Monday, through a bunch of trial and error, I’m able to find a combination of blocks that equals the amount of pain I’m feeling that day. It might look like this:

   

Pain-wise, this is great. But because I don’t know exactly what’s causing today’s pain, I don’t know exactly why these particular tools worked in this particular way  on this particular day. So  I don’t come away from the day with a recipe of pain relief that’s guaranteed to work every single time for every single pain day. I could try using the same blocks on Tuesday and have it look like this:

So then I’m back to trial and error again with, as always, absolutely no guarantee that any of my other pain management blocks will work that day. I might find a few more blocks to add to my pain relief tower. I might find enough to equal the size of that day’s tower of pain. Or I might try every single one of my tools and not have any of them work, which means I just have to find a way to ride out the pain for the rest of the day and then hope I have better luck the next day.

So the next time you see Lyrica on TV, or meet someone who lives with chronic pain and illness, or hear people debating whether or not people like me, who suffer Every. Single. Day. from relentless, agonizing pain should have access to LEGAL narcotic painkillers that help us function and actually have a good quality of life </end rant>, I hope you think of this post.  Because managing chronic pain is really, REALLY hard. It is a full-time job that we did NOT sign up for and we work our freaking asses off to do it. With no vacation days or weekends off. No breaks, E-V-E-R. We are on call for this job 24/7/365. (And if you don’t mind, I’d like to ask you to take just a few minutes and imagine if your job was like that. I suspect your brain won’t let you do it.) We are those ducks you see gliding across the pond: holding it together, managing this beast of a burden while also creating a good life on the surface, all the while paddling like a maniac under the water to make it all work.

So maybe the next time you see one of us you might also say something like this: “Wow, that sounds really hard. I’m sorry you have to go through all of this. You’re doing SUCH a good job.”

Because gifts of comments like that?  Are some of most powerful, soothing tools we have.

…you need multiple items from the same store, but you have to break your shopping up over 2 or 3 days because you only have the energy to shop for and wait in the checkout line for three items at a time.