About four months ago, to continue receiving treatment for my fibromyalgia I had to change from my longtime, familiar rheumatologist to a brand-new, completely unknown pain doctor.  This change came courtesy of the new law passed back in the fall making it more difficult for doctors to prescribe, and patients to receive, pain medications (about which, MUCH more later).

For a few months prior I’d heard rumblings here and there about the change, but I refused to think about it until the day in October when I tried to call in a refill of one of my medications and found out that I couldn’t get it.

At that point I flipped out into Code Red, Total Freak-Out, Emergency, Defcon One, Panic And Survival Mode. I was consumed by the terror that I was not going to be OK, that I would no longer be able to get what I needed to take care of myself.

I managed to get one of the two remaining appointments that my rheumatologist had open that week, and somehow eked out enough medication to last me the five days until my appointment. He’s treated me for the past six years, knows that I’m stable and consistent in what I need to manage my pain, and knows that I don’t abuse my medication. So I was hoping that he’d still write for me, the only difference being that he could no longer call the prescription in to the pharmacy or add on any refills; I’d have to come pick up a new prescription in person every 30 days.

But he dashed that hope pretty quickly. Whatever his reasons he said no (again-about which, more later), and told me I’d have to go to a pain clinic from now on and have them manage that medication. At which point I transformed into a seething ball of rampaging emotions, slingshotting back and forth between raging anger and paralyzing fear.

On the one hand I was furious, F-U-R-I-O-U-S with everyone who’d had a hand in imposing these rules on us pain patients, people who almost certainly had never experienced anything near the levels of excruciating pain that we have to live with every single day of our lives. I’m talking about the kind of range that is so all-consuming that you can barely breathe, much less speak. That’s why I haven’t been able to write about this until now. All I could think about was how I wished that I could somehow curse everyone involved with passing this law. I wanted them to suffer by having to watch their loved ones develop excruciating pain and debilitating illness, and then not be able to get the medications that would bring them relief.

Then under the anger was the fear-terror, actually-of  suffering. Not just the physical suffering, the pain that crackles through every moment, every breath, of every single day, but the emotional suffering that accompanies it. I’m terrified of the dark place I go to when the pain becomes unbearable and my mind tells me that the only way I’ll ever find any relief is if I’m dead.

So. I was able to get into the pain clinic the following week, and, being the OCD, anal-retentive, obsessive-compulsive firstborn that I am, I prepared a Ph.D.-level, multimedia  presentation of all the things I do to manage my illness, in order to prove that I “deserved” pain medicine.

I was completely at the mercy of this person whom I’d never met before. I didn’t know him, and he didn’t know me. And there must have been at least twenty people in the waiting room with me, so I knew I would only get a “drive-by” kind of appointment.

So there I was, about to see a complete stranger, who had the power to say “yay” or “nay” on giving me a prescription, and I had to figure out how to convince him that yes, I really do need this medication  to keep my pain at a manageable level, with maybe 5 minutes to present my case.

So, um, how the fuck was I supposed to do that?

(To be continued.)

 

Last month Mr. Cranky Fibro Girl and I went to the beach with my parents, my brother and his wife, and their 2-year old and 4-year old sons. I always like traveling with my dad because his Inner Hedonist is as highly developed as mine is, so we always stay someplace nice. I also enjoy hanging out with our nephews because they find joy in the smallest things, like figuring out how to flip open the lock on the sliding glass door to our fourth-floor balcony, accidentally falling face first into the tub and sucking down half their bathwater, and other exploits basically designed to give six adults a week-long, anxiety-induced heart attack.

It was a little challenging to be around little ones for that long, but I met it by cornering the market on all the jobs that could be performed while sitting down. Block the unsteady 2-year old from leaving the relative safety of the living room carpet for the hazards of the tiled entrance hall? On it. Participate in full-contact racing with every Matchbox Car known to man? All over it. Holding the straw while someone sucks down a Capri-Sun? I AM THE FREAKING VALEDICTORIAN OF HOLDING THE STRAW.

In addition to the fun of little kids and the enjoyment of catching up with each others’ lives, it was also very mentally relaxing. I could sit on the couch, look around, and see absolutely nothing that had to get done. That might have been the best vacation perk of all.

The trip was lovely.

AND.

It was really hard. Because I was sick. As sick as I was 3 1/2 years ago when I got back from a trip to the West Coast and had to be wheelchaired off the plane. So sick, that most days I couldn’t manage the stairs in our condo. Sick enough that I had to miss like, 90% of all the fun things that everyone else did.

And it broke my heart.

Not being able to keep up or do much when it comes to everyday life is one thing; I’ve made a sort-of peace with that and figured out how to navigate my days pretty well. But to be unable to do something as easy as taking the elevator downstairs to sit by the pool was almost more than I could bear.

Part of it was being the lone sick person in a group of  healthy people. I could not ask for a more compassionate and supportive family. But the fact was that they could go shopping, go to the beach, or even just go down to the hotel lobby every afternoon at 3 to get some fresh-baked chocolate-chip cookies, and I couldn’t. And it was brutally painful to have that truth rammed home over and over again, every day, for an entire week. Illness can be a lonely, isolating thing.

It was also painful to realize that I was operating under certain assumptions about my life and my illness that turned out not to be true.

It’s been six years since I was diagnosed with fibro, and seven years since I got sick with the Hostile Alien Intestinal Bacteria, and I’ve had to come to terms with a lot of loss. A lot. But the past couple of years  have been about adding things back into my life, so I guess I assumed that the losses were over and fibromyalgia wouldn’t-or couldn’t-take anything else away from me.

But sadly I was wrong,  and that REALLY pisses me off.

Because that is NOT the way vacation is supposed to BE, and that’s the way vacation was, and vacation should be EASY, and vacation was hard, and that’s NOT FAIR, and you’re right, it wasn’t fair, and I should be OVER this by now, and I’m not over this yet, and maybe I can just give myself a break because this is hard, and sometimes being angry feels better than being sad.

So that’s what I’ve been chewing on lately, my latest attempt to bend life and illness to my will (because that’s worked out so well for me in the past). But in the glorious both/and that is my life, my favorite TV shows have had their fall premieres, I have a big celebration planned for my birthday next week, I’ve started getting into genealogy lately and have discovered cool things about relatives I never knew, I’ve got lots of fun books to read, and it seems that words are flowing for me again.

It seems that Fucking Fussy August Syndrome is finally over, and I am feeling the fun new energy of fall.

 

 

 

 

 

 

 

If you’ve ever wondered what it’s like to have fibromyalgia, or have tried to explain what it’s like to someone else, watch this video.

(From Chronic Illness Cat)

Today is National Fibromyalgia Awareness Day.

I’m never really sure what to do on this day, because of course I’m aware of fibromyalgia in every single moment in which I am conscious. Plus, I’ve been living with this illness for 6 1/2 years now, so everyone I interact with on a regular basis, whether in person or online, is aware of it as well. It’s also regularly featured on television through the commercial for the drug Lyrica, so it’s been years since I’ve met anyone who doesn’t have at least some idea of what this illness entails.

When I first got sick, all I could see for a very long time was my own suffering. I hurt, and so I wanted everyone else to hurt too. In that place, I wanted people to be aware of how victimized and betrayed I felt, and how unfair it was (to my mind, at least) that they got to continue on with their healthy, happy lives while I had to watch so many parts of my life disappear.

After a couple of years or so I was able to move up the emotional scale just a bit, from powerlessness and despair up to anger. Anger felt much better than hopelessness and grief, and it was from this place that Cranky Fibro Girl was born. Here I wanted the world to be aware of my attitude, edginess, and self-righteous wrath. I was always spoiling for a fight, and always on the lookout for something-or someone-to bash up against so I could unleash the full fury of my wrath.

But eventually my anger ran out. It is very exhausting to be furious all the time, and after about 3 years I finally realized that being mad was not making one single bit of difference in anything related to my illness. I finally got that fibromyalgia isn’t personal-it just is. So I could be angry if I wanted to, but I only had a limited amount of time and energy, and I was starting to wonder if there were other ways I wanted to spend them. At this point my desire for awareness started to shift inward, to the relationship between me and me. I finally had to acknowledge that I would not be able to bend fibromyalgia to my will, so given that, how did I want to live?

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.

1. Pain is hard. It’s ground me down. It’s aged me. It’s carved itself in my bones, and chiseled itself across my face. It can literally cause me to go out of my mind, because when it gets high enough it cuts me off from my higher brain functions and forces me to hunker down in survival mode. It can steal all my memories of pain-free days, and any hope that eventually it too will pass. Therefore, the most important thing I can do to create a good life for myself is to manage my pain.

2. I am the one who makes meaning out of this illness. I am the one who experiences life in this body. I am the one who thinks with this mind. I am the one who navigates through my days, so I am the only one who can sift through all that information and decide what it means for me. No one is suddenly going to appear with all the answers for me, and it’s my responsibility to decide if that will help me or hinder me in how I live my life.

3. Healing does not necessarily mean being symptom-free. OH, how long it’s taken me to stop fighting that one. On the one hand I hate it, because I am SO OVER this pain. But on the other hand, it means I don’t have to wait for some magical point in the future-that may never come-in order to live, and to even live well. Not that this is an easy thing to do.

Which leads me to my next point, which is that

4. Life is Both/And, not Either/Or. At first I fought this idea as well, because -of course-I wanted healing to mean the complete absence of fibromyalgia. I was desperately attached to a very specific outcome. But it never came, and it’s entirely possible that it never will in my lifetime. So eventually I got tired of the suffering this rigidity was causing me, and luckily, this was suffering I could do something about. When I move away from the demands that All-or-Nothing thinking places on life, the possibilities for having a “good” day are, if not endless, still pretty darn high.

In practice, it might look like this:

“My pain was pretty high when I woke up this morning, AND I ordered a fun new book for my Kindle.”

“I was stuck inside the house again today, AND I have a new episode of ‘Blue Bloods’ to watch on TV.”

“I’ve had to take a lot of pain medicine today, AND I’ve been able to keep the windows open because the weather is gorgeous today.”

5. This is a marathon, not a sprint, and marathons are hard. I’m still working on this one. A LOT. I like beginnings, and I like ends, but middles are really tricky for me. And chronic illness means lots of time spent in the middle of things-pain, fatigue, boredom, etc.

6. Sometimes the best I can do is to help myself feel just a little more comfortable in a given moment, because “better” is just too far away. Sometimes chronic pain is excruciating and unbearable. And you have to bear it. And it is more than can be borne. (And just so that you know, that whole, “You’ll never be given more than you can bear” is kind of a bunch of hooey. Just saying.) When I am here, “feeling better” is in a completely different universe, and one that is just too far away for me to get to at that time. So instead I focus on what could help me feel a little more comfortable: pain medicine, a cold soda, a TV show, a bath, a book. Better is not always accessible, but comfort is.

7. Despite what my mind tries to tell me, this really isn’t my fault. I’m not that powerful.

8. Chronic pain and illness are not intellectual concepts to be grasped; they are experiential realities. Many people ask me what it’s like to have fibromyalgia, and even though I’m a writer and live for words, I know that words can’t really make other people understand what I’m going through. They only way to understand illness is to be ill yourself, and I would never wish that on anyone, except  for maybe just a few minutes so they can really get how deeply I suffer and how strong I really am. I can’t explain it, you won’t get it, and that’s OK.

Here’s to another year of living well.

 

 

 

 

 

Today is not a good fibro day. (Although, is there even such a thing as a good fibro day, or is that just an oxymoron?)

If you’ve ever seen the TV commercial for Lyrica  where they show the inside of a person that appears to be nothing but endless pathways of fire, that’s pretty  much what fibro feels like for me: burning pain that radiates from the tips of my index fingers, up and down my body to the soles of my feet. It’s like someone took a cigarette lighter and jammed it down into the deepest layer of muscle in my elbows, shoulders, knees, and other, euphemistically-named “trigger points” (I guess “spots where you’re lanced through with white hot pokers forged in the deepest fires of hell” is a little off-putting), and then left it there to smolder until my entire body caught fire.

My body reacts to this pain as it would to being punched. It steals my breath. I collapse into myself and brace for another blow. Everything in me constricts until I am just a mass of fiery knots being pulled tighter and tighter.

But it’s not just my body that closes off; my brain also closes down into survival mode. I’ve learned that in really bad flare-ups I do, temporarily, lose my mind. I am locked out of my higher brain functions because it’s taking all of my resources to just keep breathing through the crashing waves of pain.

So one of the coping techniques I’ve had to learn is how to create even a hair’s breadth of inner space where I can separate myself from the pain and figure out how I can help myself feel a little bit more comfortable. It is not easy. It is a practice, one of the hardest ones I’ve ever undertaken. It’s a muscle I’ve had to consciously build up over the past 6 years.

Pain meds help. EFT helps. Working with Lynne helps. Taking a deep breath helps. TV on DVD and books on my Kindle help. And the newest tool in my collection, Curvy Yoga, helps.

Breath by breath, in tiny ways, creating little moments of relief.