Because the skills I’ve honed in over a decade of being homebound have gone, overnight, from hardship to Superpower.
Isn’t it ironic?
Because the skills I’ve honed in over a decade of being homebound have gone, overnight, from hardship to Superpower.
Isn’t it ironic?
Originally published 2/26/13 Â
As I wrote in my previous post,Â when I am seriously manic it feels as though Iâ€™ve reached the absolute heights of ecstasy, at least to begin with. But mania takes an incredibly heavy toll on my system, starting with the fact that when I finally plummet back down to earth, the contrast between my non-adrenaline fueled life and my mania-driven existence seems excruciating and unbearable. It happens so abruptly that itâ€™s like slamming on the brakes when youâ€™re going a million miles an hour around a track;Â you skid, you spin out, your brakes lock up, you strip all your gears, and you smash into all the other cars around you and then explode in a giant (metaphorical) fireball.
Plus, it leaves you with a hell of an emotional hangover.
It reminds me of the scene in â€œTop Gunâ€ when Tom Cruiseâ€™s and Anthony Edwardsâ€™ characters have just buzzed the control tower in their really expensive military aircraft, and while theyâ€™re getting chewed out by their commanding officer he tellsÂ Tom Cruise, â€œSon, your egoâ€™s writing checks your body canâ€™t cash.â€ But in this case my maverick check-writer is my mind, and when it comes time to pay up thereâ€™s nothing left in my energetic, emotional, or physical bank. So Iâ€™m hungover and overdrawn.
Thanks to all the external triggers, like all the things happening in our country right now, and all the internal triggers, like moving to a new state/phase of life after 22 years in the old one, my bipolar and rapid cycling have been pretty amped up. So I thought I’d republish a couple of pieces I wrote a few years ago that describe, for me at least, what it’s like to live with this condition.
Originally published 2/19/2013
Yesterday I was talking to my Partner-In-Crime, Lynne, and we had what seemed like the millionth session of working on my Bipolar, rapid mood-cycling stuff. If youâ€™ve never experienced this yourself,Â Iâ€™ll just give you a quick description ofÂ what it feels like for me.
If you remember those spring and bar scales you had to stand on at the doctorsâ€™ office, then imagine that they represent our emotional range. Now, on those scales you can only move the bar so far in either direction before you hit the edges; this is how I picture a healthy emotional range. It goes from unpleasant emotions up to good-feeling emotions, but it has some governors on either end.
But on my emotional scale there arenâ€™t any edges; thereâ€™s nothing to stop me from tipping over into emotional extremes, and then just falling off the scale altogether. Over, and over, and over, and over, and OVER. I might be able to pull myself back up onto some kind of middle ground, but when this stuff is really triggered I just slip right back down the other side into what feels like a bed of emotional nails.
Iâ€™m grateful that I donâ€™t have the most severe form of Bipolar, but oh my gosh, what I have is so SO hard to manage, and I am one of the fortunate ones. I have good meds and incredible support, so Iâ€™m not alone; but then again, I am alone, because when it all comes down it is just me and my mind.
Generally speaking, I love my mind. I love to think. I love information. I love to take classes and learn something new. But when my Bipolar stuff is activated itâ€™s as if my mind is betraying me, because the tricky thing about this illnessÂ is that Bipolar Mind lies. And if Bipolar Mind is the bully, then All-Or-Nothing Thinking, Grandiose Thinking, and You Are â€œSpecialâ€ Thinking are its enforcer thugs.
So to quote Mr. Cranky Fibro Girl, it’s been a helluva year.
It all started this time last year when Tigger, my baby, my heart, my soulmate, was diagnosed with renal cancer. We did chemotherapy and got four more months with him, but even though the cancer was going away the treatment was just too much for his little body, and so we let him go and my heart broke into a million billion pieces. And even though that was one of my worst nightmares, to my surprise, I survived.
The next few months after that were pretty much about going back to the “chop wood, carry water” basics of self-care, and then when I was finally able to come up for some air it was time to plan the summer.
It just so happens that both my parents, my in-laws, Mr. Cranky Fibro Girl and I, and my brother and his wife all got married in years that end in “6”. So this summer was both my parents’ and my husband’s parent’s 50th wedding anniversaries, our 20th, and my brother and sister-in-law’s 10th. Â And of course we planned some major extravaganza-paloozas to celebrate, the preparations for which took up the next fewÂ months until mid-July, when the party took place.
So we took a deep breath and thought, OK, now we can relax. Which of course meant that just two weeks after the party we found out that my husband was being transferred to North Carolina. And oh, by the way, they needed him there in two months. Eight weeks (and a bit). 62 days. To pack up 22 years of life in Georgia, 17 of which we’d spent living in the onlyÂ house we’d ever owned. To sell said house and buy another one. To sort through Every. Single. One. of our earthly possessions, MULTIPLE times (still not done with this one). To declutter and donate and discard and decide and delegate (again, a work in progress). To pack it all up and then go baby, go!
I’m pretty sure that I have touched every piece of paper that has ever existed since the beginning of time itself. You should all check your own filing cabinets, because it’s entirely possible that I’ve decluttered and organized all of your papers too. I had no idea it was even possible for so much paper to EXIST.
And of course, it was all our own doing. I found papers from when I was in Pre-K, which I believe was back in 1974. We hadÂ every single tax return we’d ever filed, all the way back to my husband’s first one from 1989. I had all of my students’ exams from the 2 years I was a TA in graduate school 22 years ago. We’d saved every check register we’d ever had. We had boxes and boxes of files full of papers from companies that no longer exist anymore. Why did we ever think we would need these things again?
And that was just the papers. It was like that with everything: furniture, boxes, books, tools, paint-don’t even get me started on the paint. I can’t tell you how many cans of old paint we found when cleaning out all the corners of our property, because numbers don’t go that high.
Now, in the interest of full disclosure I will tell you that we received one of the best relocation packages I’ve ever heard of. Plus, we’ve actually been working on moving back to North Carolina for the past four years. So it was good that we sort of rested up, because after four years of living in limbo with absolutely no movement we suddenly had to move at what seemed to me like superhuman speed. (My husband will tell you that he totally expected things to be that way, but even he had that glassy-eyed, overwhelmed look of someone who’d just survived a train wreck with an enormous brick wall by move-in day.)
Meanwhile, regular life continued apace.
We spent a week at the beach with my brother, sister-in-law, and two nephews.
My blog made Healthline’s Best Fibro Blogs list for the 4th time in 5 years,
The website The Mighty ran my post on what it’s really like to live with chronic pain.
My husband went to work every day.
And I still had fibromyalgia.
But here we finally are, on the other end; somehow, we did it. We’ve transported ourselves, the cats, and all our worldly goods to our new state. I’m still having periodic meltdowns as all our worldly goods are currently strewn across ALL the flat spaces in our house. And we do sometimes go for long periods without any actual cat sightings, just trace evidence of their existence. But we’re here, and yay, us.
Here’s to great new experiences and many fun stories ahead.
Last Thursday, at the end of a week that included 2 chemo appointments andÂ a consult with the nutritionist for Tigger, driving all over creation to get copies of MRIs and patient records for me, Â a consult with a back surgeon, and a quick trip to North Carolina, I was back at the vet for an acupuncture appointment for Tigger.
He’d responded really well to acupuncture just a couple of days earlier, so I had high hopes for a good result from this visit as well. Plus, this was the last thing I had to do before I could collapse onto the couch and not move again for many days in a row.
Unfortunately Tigger was operating underÂ a completely different agenda, one titled, “Why no, as a matter of fact I am NOT going to relax and remainÂ still for the next 15 minutes, good luck with that.” And thus began some of the longest minutes of my life.
It’s not like anything bad was happening. Tigger had just been confined for a few hours getting his treatment, so he wanted to be up and around and exploring. He was feeling just fine; it was Mama who was at her wit’s end. I’d pushed myself into the muscle weakness, shakes, sweats, and weepy exhaustion phase of fibro, and I was stressed out of my mind over the fact that Tigger wouldn’t eat and was losing more and more weight, WHICH IS WHY WE WERE THERE IN THE FIRST PLACE, TIGGER, SO YOU COULD FINALLY FREAKING FEEL BETTER, AND IT IS NOT GOING TO HELP EITHER ONE OF US FOR YOU RAPPEL DOWN THE FRONT OF MY SHIRT. Ahem.
But the appointment finally came to and end, withÂ Tigger evenÂ managing to retain one or two of the needles in their proper places, and then, hallelujah, hallelujah, it was time to go home.
When I was checking out I heard the lady in the lineÂ next to me discussingÂ the pronunciation of her last name withÂ the vet tech behind the desk. She gave the Italian pronunciation, then said, “In English it’s pronounced ‘Ferrigno’. Like the Incredible Hulk.”
I chimed in with a bright smile, happy to chat about ANYTHING other than vet stuff and eager to bond with a fellow animal lover. “Oh-that’s just what I thought!”
“Yeah,” she replied drily, looking me up and down. Â “That just shows your age.”
Why thank you, kind lady. THANK YOU SO VERY MUCH FOR THAT.
As I wrote about in my previous post, I’m in a place with my fibromyalgia where I have a little more inner capacity to explore some new things, and one of those things has been photography.
I took Vivienne McMaster’s “Be Your Own Beloved” class last fall, and ever since then I’ve been hooked.
She’s currently teaching a class on learning to use your DSLR camera (one of which was most generously bestowed upon me by Santa Claus last Christmas), and right now we’re learning about focus. I decided to practice shooting our rosebushes today which, thanks to the legacy of the horse poo, are outstanding.
Today is one of Those Days, a day where all I can see is the Grand Canyon-like chasm that exists between the projects I’d like to work on and my actual capacity.
This was a rugged week. My husband was out of town all week on business, so it was up to me to hold things together on the home front. That by itself is always a challenge, but it was made even more difficult by Atlanta’s second winter storm in as many weeks. And I know I was tired and anxious, but I got really triggered by all the mean comments-some global, and some directed at me personally-about how we were overreacting, drama queen Southerners who couldn’t find their own ass with both hands and a map, and how we didn’t deserve any sympathy whatsoever, get back to us when you have a real emergency.
But this was a real crisis for me (and many other people too) that did have the potential to turn into a serious emergency.
You don’t get it, I wanted to say to all the people who mocked me on Facebook. This was the first time I’d ever had to deal with potentially dangerous weather all by myself. Always before I’ve been with my husband or my dad in this kind of situation, and I don’t have their skills or physical abilities. I don’t have any physical abilities thanks to fibromyalgia. You try coping with aggressive weather in a body compromised by years of chronic illness.
You don’t know, I cried to myself, that the last time we had a significant accumulation of ice a tree crashed through our roof, and that I still have nightmares about it. And you can say that lightning doesn’t strike twice, but our house has been struck by lightning three summers in a row so yeah, whatever.
You have no idea, I yelled at the national news media, what it’s like to have to make calculations like, should I take the medications I need to manage my illness but cause myself to be unable to respond to any crises because of all their side effects, or do I forgo the medication and be able to cope with potential emergencies, and suffer agonizing pain instead.
You can’t imagine, I raged at New England and Canada, how terrifying it is to face a possible power outage when you depend on medical equipment to manage your illness.
So today, I am done. I am empty. I’ve got nothing left. My husband is back home, and I don’t even have the energy to sit in a movie theater with him for a couple of hours.
It is really, really hard to be here in this gap. Unless you’re in it-and may you never, ever have to be-you can’t understand it.
So yay me. Yay Atlanta. Yay the South. We totally rocked this. If I have to be snowed in and iced out there’s no one I’d rather do it with, and no place else I’d rather be.
(originally published here on August 25, 2009). Since I’ve already admitted our “blanket situation“.
Now that we have been married for thirteen years, my husband and I have gotten pretty good at working out the different roles in our relationship. Some things I’m in charge of, some things he’s in charge of, and some things we do together. It’s pretty balanced and comfortable.
But sometimes one of us gets a little funky in some area, and the other person has to step in and have a little “come-to-Jesus” meeting with the other person.
Case in point-my husband and his relationship to our rechargeable batteries. A few years ago we started buying rechargeable batteries since we both are so enamored of electrical gadgets. But lately, forÂ like, oh, the last year or so, the batteries have stopped holding their charge. So we’ve been having a lot of conversations like this:
Me: “So, the rechargeable batteries are losing their charge.”
My husband: “No they’re not.”
Me: “Yes, they are. Seriously-I put them in the camera, and I can take like two pictures, and then I have to replace them again.
My husband: “The batteries are fine. They work just fine for me.”
It’s like one of those relationships where a girl is dating some scummy, lowlife guy who beats her, but she keeps on making up all these justifications for why she’s not leaving him:
“Oh, he didn’t mean it.”
“Oh, I know he loves me.”
“But I can change him.”
So last FridayÂ my husband got home from a business trip, and when he tried to work on his computer he saw that he needed new batteries in his mouse. And I am not kidding, he walked back and forth in front of me from the kitchen to his office THREE TIMES in the space of five minutes because, guess what? NONE OF THE BATTERIES WORKED! And as he passed me by his face dared me to say anything, which I didn’t have to, because the smug grin on my face said it all for me in that it was loudly broadcasting the message of, “SEE-I TOLD YOU SO!”
But even then he refused to admit defeat, continuing his attempts to manufacture tiny threads of hope that he could hold onto, so I had to stage an intervention.
“We are going to Fry’s this weekend, and we are buying new batteries AND a new charger!” I proclaimed.
“Oh we are, are we?” retorted my husband. But in his heart he knew that we were, because I almost never put my foot down like that, which means that when I do, he listens.
So we went, and he was all resistant and rejecting everything they sold, and I was like, “Dude-IT’S JUST BATTERIES! And we can get a charger AND a set of batteries for under twenty dollars. I don’t understand what the problem is here.”
He really didn’t have a good answer to that question, so I prevailed and we made our purchase. And so now we have two chargers plugged in in the kitchen, because apparently you can force my husband to go to the electronics store and buy new batteries, but you can’t make him use them. So now he makes a point of only using old batteries from the old charger as if to say, “I know Jenny has abandoned you, but I never will.”
It’s like these shoes he had back when we first got married. He had this pair of Docksiders which he loved, with a deep and abiding passion. Which was just fine, until the day I noticed that every time he wore them, he bled. His beloved shoes were MAIMING him, but he absolutely refused to admit what was going on.
Me: “You can’t wear those shoes anymore, because they are causing you to bleed.”
My husband: “I don’t know what you’re talking about. These shoes are just fine.”
Me: “There is blood flowing from your heels even as we speak. THEY ARE NOT FINE.”
My husband: “There is nothing wrong with these shoes. They are the best shoes ever. Go away!”
So somehow I managed to get him to throw them away, but to this day he still mourns their loss, and blames me for ruining their perfect relationship. Which I guess is just an example of tough love, when you have to step in and be the bad guy to keep a loved one from getting hurt.
And so I know that to be fair, I should include some stories now about how I am all unreasonable and in denial about things, but truly, around here it’s pretty much like, “Oh, Jenny’s being crazy again? It must be Monday. Or Tuesday. Or a dayÂ ending in “-day”.” (See: The Having Of Fibromyalgia, And My Denial Thereof, In That I Am Not Really Sick).
But I can tell you about an area in our marriage where my husband and I are The Most Stubborn Human Beings Who Have Ever Lived.
When I was in high school my mom bought me an all-new set of bed linens, to replace the set I’d had almost since I began to sleep in a big-girl bed. The set was PEACH, to match the PEACH flowers on my wallpaper, and included a PEACH blanket. To go with all the PEACH in my PEACH room.
Well the blanket came with me when we got married, and for some reason my husband insists on referring to my CLEARLY PEACH blanket as “the pink blanket.”
For thirteen years now we’ve been having this debate, with neither side budging an inch. It’s gotten to the point now where one evening, when I was very sick and needed a blanket, I refused to ask my husband for help. Because if I asked him for the peach blanket, there was a chance he would refuse to bring it to me. And if I referred to it as the pink blanket, then he might think that he had “won”. Because we are dorks, and also, being firstborns, “I AM RIGHT. AND YOU ARE WRONG. WHY CAN’T YOU SEE THIS?!”
Don’t you wish you lived here too?