Posted in Journal, Conversation, Op-Ed, Uncategorized

Half Life

My mom taught me how to read before I turned four. I still have my first primer, Fun With Dick and Jayne, pictured here, binding taped, pages curled and torn, a few crayon doodles scattered throughout. These primers are filled with simple sentences for new readers, like See Spot run and See Jane play, etc.

I can remember that I was so excited to be reading a book about a girl named Jane, since we shared the name. I may have spelled mine differently, but they still sounded the same and that made me feel special. One of the games I’d play during this time, was to shout out whatever I was doing: “See Jayne jump, Mom! Daddy, see Jayne hide!” As Mom and I delved deeper into the primers, I was learning new things just as Jane was learning them in the books.

After my fourth birthday, my mom was diagnosed with thyroid cancer. In the mid-1960s, the C Word was more often than not a death sentence and you were ashamed to admit having it. There was a stigma associated with being diagnosed, as though it were contagious. I don’t remember a lot from this time but I do remember hushed voices, closed doors, frantic whispers and the Catholic medals and scapular pinned to Mom’s mattress once she was home from the hospital. Everything was kept dark and I was always told to be quiet. It wasn’t long after this that my anxiety and panic attacks began in earnest. Once Mom recovered, I was completely stricken to have to leave her side but no one seemed to understand why. I didn’t want to play outside unless she left the back door open and I could see her inside the kitchen. Kindergarten was an absolute horror for me because that meant separation from Mom for several hours. The relief I would feel when I would find her waiting for me in the schoolyard after class was palpable.

Now understand that this was never articulated, let alone understood. I didn’t equate my mom possibly dying with not wanting to be away from her or with the beginning of my always present stupefying fear. Nor did anyone else. It’s funny, because over three decades later, after I “broke my back,” when so much of this long-ago -and-dealt-with-anxiety inevitably resurfaced along with other crap I had deeply buried, I seemed to be the only one who ever thought Mom’s life was in danger all those years ago. It was a shock to my family to learn that I had thought she might die at 30 years of age. For the record, she was treated, the cancer never returned, and Mom is a healthy and beautiful soon-to-be 83 year old. But for some reason, as a vulnerable four year old, I picked up on someone else’s fears or overheard an adult conversation not meant for my delicate ears. Somehow I had come to believe that I was going to lose my mom when I was four years old. And I firmly believe this ‘misunderstanding’ was the root of my nearly life-long battle with anxiety and agoraphobia.

Looking back and remembering the little girl I once was, at some point, I must have realized that Mom wasn’t going anywhere because the separation anxiety began to dissipate. But the fears did not. They increased and manifested into illness. Now going to school was The Problem. Every morning, I’d be sick with either a headache or nausea or a stomach ache. I’d have trouble breathing and feel faint or vomit. As soon as Mom told me that I didn’t have to go to school, I’d start to feel better. This was very confusing to a child of 5, 6, 7, 8…I KNEW that I was sick. I had real symptoms but as soon as it was past 8:00 am, when the school bell would ring for attendance and I was safe at home and tucked up warm in bed, the symptoms would start to gradually fade away. Once the evening came and it would be time to prepare for the next school day, the symptoms would appear again. I began to feel like a fraud. I KNEW I wasn’t lying or making things up but why would I always feel better when I no longer needed to go to school? This was a very difficult concept for a little kid to navigate and far too young of an age to begin to doubt oneself. But that’s exactly what I began to do; I thought I must be imagining it all. That something was wrong with my head.

School was now The Place I was absolutely petrified to go. I had a lot of anxiety and panic attacks during these years. The bullying began about 4th grade and lasted throughout high school. Of course this caused even more anxiety and an indelible trauma that lasted long into adulthood.

It took many many years before I was able to understand what I was experiencing. We didn’t use words like anxiety or panic disorder in the 60s, especially in terms of kids. And once I was able to figure things out, I had to learn how to manage it all. But I did it. First with the help of a psychologist and counselor in my freshman year of college who explained that what was happening to me was something called an anxiety or panic attack brought on by bouts of severe agoraphobia. I cannot express how knowing this and finally having an explanation, a diagnosis, validation that I wasn’t crazy, opened up my world. The fears were by no means gone but once I understood them, I could begin to manage them with further therapy. I finally settled into my own skin and liked the woman I was becoming and the life I was living. I had found my life partner, fell in love, married, and we were on a lovely journey together.

Then I broke my back. For years following the injury, I was The Patient. The Defendant. The Victim. The Disabled Wife. It was inevitable to fall into those roles and remain there for years as my medical case was never-ending. First, we fought for over three years for a proper diagnosis. Then, over the next several years we fought through multiple surgeries and endless recoveries. As soon as I’d finally recover mentally, physically and emotionally from one surgery, we would learn that I needed another. And another. And another, And another. And another. We fought to retain our home as our savings dwindled and dried up. We fought for our marriage when our roles as patient and caregiver were simply not enough. We fought to maintain my sanity when I thought I could take no more.

Through it all I firmly believed that if I just did this or if I just solved that, I’d be back to the way I was before. I’d be normal again and MG and I could get our lovely life back. But the years just kept marching on and the disappointments kept piling up. And the doubts from the child returned and manifested onto the adult. Why aren’t I healing? Could I be making this up? Am I really this sick? Is the pain really this bad? Why are people doubting me? If I were just a little stronger. If I could just push through…

Following a very dark period of self doubt, I crawled back into the light (another story for another time). I was finally forced into the realization that I was never going to be the Jayne I was before. There was simply no other recourse except to accept the new Jayne. I may have come to it kicking and screaming but I had finally come to terms with my injury and my limitations and the acceptance that this was the new normal.

But, unfortunately, that’s as far as I got. For the next few years, I was really just existing, living a half life in the shadows with nothing really changing except my age and the lines on my face. When MG was diagnosed with cancer, I was able to don the roles of Caregiver and Protector. And I managed those well, until they were no longer needed.

One of the reasons I began this blog was to find my voice again. And it worked. For a short time. I found some wonderful new friends and realized that I was one of a multitude living with chronic pain and multiple health issues.

But then what?

I remember those learning-to-read-with-Dick-and-Jane-years and I understand that over half of a century has passed by and yet here I am, at what feels like right smack dab back at the beginning! I seem to have come full circle. For what on earth is it that Jayne is supposed to do now? To learn now? Who is she? What is her purpose?

Much of our lives are lived by rote. We get up at a certain time, get dressed and head off to school or work or are busy getting loved ones off to school or work. We have responsibilities. Things to do and places to be. Whether we are cleaning the streets or researching a cure for cancer, we are all pieces of the puzzle. We all have our designated roles to play. But strip us of those roles and we flounder, or at least I have. Once I was no longer The Victim or The Patient or The Caregiver, I didn’t know who I was. I still don’t know. Perhaps The Blogger With Little To Say?

After far too many years, I’m attempting to find my way out of the shadows, out of the half life in which I’ve been living. I’m trying to reinvent myself and to figure out who this new Jayne really is for surely there must be more to her than her pain. I don’t want to wake up to another day and wonder if it’s worthwhile to get out of bed.

I ask myself again. Now what? What shall we See Jayne Do?

Posted in Exercise, Reblog

Exercising To Ease Pain: Taking Brisk Walks Can Help ~ Reblog from Pattie Neighmond at NPR

Emma Dehne, who lives in Chapel Hill, N.C., had debilitating pain in her knees, starting around age 40, and was ultimately diagnosed with osteoarthritis. Back then, just climbing stairs was very painful, she says, and exercising seemed out of the question.
Eamon Queeney for NPR

I read a terrific article today at NPR by Patti Neighmond. I’ve reprinted it here in its entirety.

For people who live with chronic pain, getting up, out and moving can seem daunting. Some fear that physical activity will make their pain worse. But in fact, researchers find the opposite is true: The right kind of exercise can help reduce pain.

Today, Emma Dehne agrees. Dehne is 44, lives in Chapel Hill, N.C., and works as a business officer in the office of the executive vice chancellor at the University of North Carolina. She says her commitment to exercise is relatively recent.

Just a year and a half ago, Dehne pretty much avoided any physical movement she didn’t have to make. Just climbing stairs was painful — “sometimes to the point where I would have to hold on to the banister to help myself up,” she says, “and I couldn’t even extend my leg.” At times, it felt as though the ligaments in her knees “were tearing.”

Dehne was diagnosed around age 40 with osteoarthritis in both knees, a painful swelling and deterioration of the cushioning cartilage in those joints that reduces their range of motion. Luckily for her, she says, she worked at the Thurston Arthritis Research Center at the University of North Carolina. The woman working in the cubicle next to hers ran a program that encouraged people with osteoarthritis to start walking to help reduce their pain.

Dehne was skeptical but felt she was just too young to be burdened by this disease; she agreed to give brisk walks a try. In the beginning she felt stiff, tired and out of breath. That changed quickly.

“I mean literally, after a few days, I started to feel looser in my joints,” she says. “I wasn’t as out of breath, and my mood started to improve.”

She started out with 15- to 20-minute walks; today, Dehne walks about 40 minutes five times a week. She feels great being out in nature, breathing fresh air, taking in the scenery and talking to neighbors. As for her knees?

“My knees feel like they did when I was young,” Dehne says. “They don’t hurt me anymore.” And stairs? No problem. “I look up at them and say, ‘Oh yeah, that’s OK. I can do that — I can walk to the third floor of my building.’ “

It might seem hard to believe that walking with a painful joint could actually help reduce the pain. But movement helps mitigate the pain and damage of osteoarthritis in a number of ways.

On the advice of a co-worker, Dehne joined a six-week program through which she learned how to safely walk to ease her pain. Now Dehne briskly walks for exercise and enjoyment multiple times a week. Her knees, she says, “don’t hurt me anymore.”
Eamon Queeney for NPR

For starters, building up surrounding muscles helps stabilize the hurting joint and also increases lubrication of the cartilage.

“Movement is essential for nutrition of the cartilage,” says Dr. Virginia Byers Kraus, a professor at Duke University’s Molecular Physiology Institute who serves on the research and medical committees of the Arthritis Foundation.

“Cartilage doesn’t have a blood supply but does have living cells,” she explains. “So the way it gets nutrition is by dynamic motion — putting weight off and on as you walk and move. The fluid inside the joint flows into and out of the cartilage like a sponge, so all the nutrients in the joint fluid get into the cartilage” and help slow any degradation there.

Neuroscientist Benedict Kolber with Duquesne University in Pittsburgh says exercise may also cause changes in the brain that can make a big difference in damping down pain.

“Exercise engages the endogenous opioid system,” he says, “so our bodies make opioids and use these opioids to decrease pain.”

In addition to other mechanisms still being worked out, natural opioids are thought to bind to the same receptors in the brain as opioid painkillers, Kolber says, but without the complications or potential for addiction. “There are some circumstances,” he says, “in which your body can produce so much of these natural opioids that you actually get some sense of euphoria” — hence the term runner’s high, a phenomenon athletes have long described.

Kolber says exercise also seems to activate parts of the brain that are involved in decreasing pain. “We get pain signals that are coming from our hands to our spinal cord and up to our brain,” he says, “and then we get these control systems — parts of our brain that seem to be activated in exercise — and that then turns down the pain system.”

And finally, Kolber says, exercise also seems to decrease stress. And stress can make people more sensitive to pain.

Dehne’s initial hesitancy to start walking is pretty typical of arthritis patients, according to exercise physiologist Kirsten Ambrose, program manager for the Osteoarthritis Action Alliance at the University of North Carolina.

“Chronic pain is debilitating, and a lot of people don’t want to be physically active,” Ambrose says, “because they’re afraid it will make their pain worse or damage their joints further.”

But Ambrose tells patients that gentle physical activity, gradually increased with a health care provider’s tailored guidance, will in fact improve their pain, and they need to “think about it as a form of treatment — something they can engage in safely and comfortably.”

Ambrose says a number of factors come into play to make that happen, including improvement in the quality of sleep, improvement in mood and a reduction in depression and anxiety. Exercise can “simply boost somebody’s self-efficacy, or their belief in their ability to be physically active,” she says. And that increased self-confidence can help ease pain too.

Walking for exercise isn’t the only such remedy, of course, but it is a simple and accessible form of physical activity. “You just need a pair of shoes and a safe location and off you go!” Ambrose says.

And, she says, most people who try it get some relief. After exercising routinely for a while, their pain diminishes, and they’re motivated to keep going.

“People tell us all the time that once they start exercising and experience the benefits, they become very committed to routine exercise,” says Marcy O’Koon of the Arthritis Foundation.

Back in his lab, neuroscientist Kolber wanted to know if the length of time spent exercising makes a difference in the amount of relief patients get. Could boosting the exercise level, or “the dose,” bring more relief?

“Anyone who develops any drug has to go through hundreds of different tests looking at dose,” Kolber says, “but in exercise there’s almost no data about dose — especially in the context of pain.”

So he recently conducted a small, weeklong study measuring 40 healthy women’s sensitivity to pain before and after bouts of exercise, using heat and pressure to elicit pain. The individuals were asked to walk briskly on a treadmill for 30 minutes. Some exercised three times that week, others five or 10 times.

He and his team found there was no difference in pain perception after exercise for those who walked just three times a week. But the findings were very different for the people who exercised five times or more each week.

“We asked them to rate that pain,” he says. “And at the end of the study, they rated the same pressure — the exact same pressure — as 60% less painful than they rated it at the beginning of the study.”

So if you’re going to try walking to ease your pain, don’t do it just once or twice and stop, Kolber advises. Shoot for getting out at least five times a week.

One word of caution: Exercise physiologist Ambrose recommends starting slow.

“Five minutes is very easy to think about,” she says, even for patients in moderate to severe pain. “Small chunks to start with and slowly progressing is the best way to go.”

She suggests people consult Walk With Ease, a walking program sponsored by the Arthritis Foundation. It provides resources, offers classes nationwide, provides tips on what to wear and when and how to stretch, among other benefits.

“It is structured, and it gives people very clear guidance on exactly how to start, how to set goals and how to track their progress so they can learn to walk safely and comfortably and reap the benefits for their arthritis symptoms,” she says. The idea is to make walking “a habit for life.”

Written by Patti Neighmond; reprinted in its entirety from NPR

Posted in Journal, Conversation, Op-Ed, Pain Management

Step Away From The Story!

Photo by Annie Spratt

On and off throughout my pain journey I had seen a therapist who greatly helped me (and My Guy) with pain management techniques. If I take nothing away from the long hours we spent together, it is this most important thing: YOUR PAIN IS NOT YOUR STORY. REMOVE YOURSELF FROM THE STORY!

He was so right. It’s the best pain management technique I have in my arsenal. When I begin to lose the juggling game and my rings start falling to the ground (see previous blog Lady of the Rings: Pain Management is an Arduous Juggling Act), I NEED TO STAY OUT OF MY HEAD! If I can do that one thing, I can survive the complete car crash and get my rings back in the air sooner rather than much, much later. Unfortunately, I kinda forgot to remember this recently.

Everything seems to hit me three times harder than the Non-Chronic. I get that cold that everyone has and they’re down for 3 days; I’m down for 9. I have a minor surgical procedure and expected recovery time is 2 weeks; I need 6-8. Bloody frustrating as all hell!

My rings have been falling out of the tapestry for months now following some minor surgery I had in March. Once the surgery was scheduled, I anticipated this happening and tried my best to prepare for and prevent it from occurring.

Prior to surgery, I was doing really well with the juggling act. So, I thought I was well prepared. House (ring) was clean and well organized. This is key because if I need something, I know exactly where it is and I don’t need to expend unnecessary yet precious energy searching for it or crawling over a mess to get to it. I’ve been eating (ring) clean. No overly processed foods. Gluten, sugar and dairy are at a minimum. Plenty of protein and leafy greens. I’m getting daily exercise (ring) and meditation (ring). I’m in a good place with my family (ring) and friends and have made a point of reaching out (ring) to others instead of staying cocooned. I’m sleeping (ring) well and, last but not least, I have the appropriate medications (ring) in line with both surgical doctor and pain management doctor. All of the boxes are checked; all eight rings flying high. I am in a great place in my head and know I have this little surgery down!

Then all freaking hell breaks loose. And most of it, I did to myself. I forgot to Step Away From The Story!

Bad Timing. I was in a great place when I made arrangements for an absolute favorite person of mine to visit for a week just before the surgery. This is a person who is very important to me and we generally keep in regular touch via text about most aspects of our lives. She has kept me going a lot of times when there was no one else to whom I felt I could reach out. (Aside from My Guy. My Guy is a blessed constant.)

Just prior to her arrival, two things started to hit me very hard emotionally. 1. The first anniversary of my father’s death was approaching. 2. I began reading about and hearing about people who had died from multiple myeloma.

I don’t want to veer off course here so quickie backstory. 1. The Big Reminder of my dad’s passing was also shining a bright light on some family drama that is indirectly breaking my heart; therefore the approaching anniversary was not only reminding me of my dad and and our last days together but ridiculous drama that occurred after his death. 2. My Guy has both had a full complete response to treatment of and is in full remission of multiple myeloma, an incurable blood cancer. Now, My Guy can spin circles around me. He is now as healthy and strong as a horse, not a single cancer cell in sight. And we NEVER think that MM will beat him. But for some bloody reason, I’m being hit with deaths from MM everywhere I turn: in my daily news feed, a magazine I randomly pick up, my dentist’s cousin’s wife’s uncle, the damned novel I’m reading!

So now we’re off to the races because I’m in my head. I’ve allowed The Story to take over without even realizing it. The story is that I didn’t do enough for my dad; I am becoming estranged from my family; and I’m going to imminently lose My Guy. NONE OF WHICH IS TRUE! But I’ve already begun the narrative. There’s no turning back now.

Bad decisions. So my company is about to arrive. Party Time! Vacation! I begin to make unwise decisions. The first thing I do is get crap food in the house because you have to have cool and unhealthy snacks during Vacation Party Time. Now I know better than this. I promise you I do. I’m married to a professional chef, for heaven’s sake. And especially since his diagnosis, we eat wisely! But in the past, food had always been my go-to for Comfort, and now, in my weakened emotional state, I’m forgetting my good habits and heading straight for Comfort. I’m doing it on autopilot; these are not conscious decisions.

Favorite Person (FP) has arrived and it’s wonderful! Until it’s not. I’m visualizing a calendar in front of my face and seeing the countdown of days until my dad’s death anniversary. Why this is suddenly a thing with me I have no idea. We were able to prepare as much for his passing as one is able to prepare for such things. It was not a surprise but a natural course of events. But it’s like I’m expecting a massive explosion or something on Anniversary Day. Impending Doom. It’s an actual physical pressure building up inside of my body. And because of this, the Family Drama has become bigger and bigger and bigger in my head and it’s now playing on a constant loop. And then, of course, My Guy could die soon. Let’s not forget that.

Of course, all of this internalized drama, excess emotion, and lousy diet are affecting my pain levels which then is affecting my sleep. I’m not thinking clearly; the fibro-fog is rolling in fast and thick. I’m having difficulty focusing on conversation because I’m fixated on the pain and that’s adding to The Story. I’m getting short and crabby with FP. We had a reasonable activity agenda set prior to her arrival but that’s now become too much for me both physically and mentally but I don’t want to disappoint her. This is her vacation and she’s taken precious time off from work. I lose my temper and say some things I do not at all mean but I’ve hurt her. I apologize profusely and all appears to be well, but I know FP. The damage is done. I hate myself.

Shortly after she leaves, it’s D-Day. Not June 6th. Anniversary of Death Day. The following day is the surgery. I fall apart completely. I’m mourning for my dad like he died yesterday and grieving for my broken family. I’ve just had intrusive and painful surgery. I’m hurting everywhere. And I can’t get FP out of my head. I’m running with The Story again. I’ve let her down. She seems distant. How can I make this up to her? Has irreparable damage been done to our relationship? How soon will it be before My Guy’s cancer returns? What if he doesn’t respond to treatment this time? Will he die? My pain is never going to go away. I hate my life. Can’t I ever just have a freaking good day? It’s going to take me forever to recover from this. How many surgeries do I have to have? I look so old. And on it goes. I’m an official resident of Crazy Town.

Some miracles DO happen. I recovered well from the actual surgery. But after the necessary recuperation period, I couldn’t get back up again. All of my rings had fallen to the floor.

My clean and well organized house had become messy and disorganized. I became re-addicted to carbs, sugar and gluten and was freely eating the old junk trying to find that Comfort I (mistakenly) thought it had once given me. I hadn’t been exercising and when I started again I overdid it and then literally couldn’t move. My spinal pain became worse than it had been in recent years and the sleeplessness went on for weeks. My meds had gotten out of sync, causing strange nerve sensations and uncontrollable body twitches when I would try to rest. The nights were endless and agonizing. Screaming anxiety had taken control and capital D Depression was close on its heels. The black hole started sucking me in and I couldn’t seem to help myself. And, of course, The Story kept expanding and getting juicier with each passing day. I completely forgot the strongest tool in my pain management toolkit! I had become the freaking story!

Now I clearly did most of this to myself. Had I not allowed The Story to take over, I wouldn’t have gotten myself into such a fix. Oh, I would have dropped a few rings, sure. But with the right attitude, I could have easily added them back into the tapestry as soon as I was physically able to do so. Instead, I began the slick slide into The Dark Place.

Thank God I had a few aces up my sleeve! 1. My Guy, ever constant, ever loving, ever patient. (How does the man bloody DO it??) 2. My very smart and compassionate pain management doctor who really listens and never blows me off. Even when I sit in his office in a wet puddle of streaming tears and hiccoughing sobs. 3. Me. I somehow found the strength to stop listening to The Story. Every time I’d think a thread of the narrative, I’d stop myself by saying, NEXT! A hundred, five hundred, one thousand times a day. Over and over and over again! Next! Next! Next! Until The Story slowly began to fade and lose its power over me. Between the three of us, we were able to get me jump-started. Yet again.

Tomorrow I get my house cleaned! Seven more rings to go…

Posted in Journal, Conversation, Op-Ed

The Lady of the Rings: Pain Management is an Arduous Juggling Act

Photo by Berto Macario

As we are all different, we all process our pain and emotions in myriad ways. I have been struggling with debilitating pain for 18 years. Prior to that, in my youth and early twenties, I struggled with severe anxiety and depression. I have experienced the dark night of the soul. But through countless struggle, I have found my way into the light. The goal for me is balance: the only pathway I have found that has no dead end. It sounds so simple but it’s actually damned monotonous and bloody hard work to attempt to live a life in balance while in constant pain. The slightest swerve has the potential of a car crash. But if I do not strive for balance scores of times throughout each day, I literally cannot get out of bed on the following day.

I’ve become a juggler; slowly learning a talent I never really had much dexterity for achieving. But as this necessity has been foisted upon me, I have slowly developed somewhat of a skill in keeping several rings in the air, flying overhead in a constant flurry. Once in a very great while, the stars align and I am able to keep all of the rings flying and it is indeed glorious. Life is beautiful and exciting. Adventure awaits around the very next corner.

Sometimes I drop one or two of the rings but manage to keep the others aloft, painstakingly re-adding the lost rings to the twirling tapestry one slow movement at a time. Life still goes on and the refocusing upon the dropped rings often results in new breakthroughs and achievements that may not have otherwise been found.

In a perfect world, we would be able to keep all of the proverbial rings in the air and manage our chronic illnesses with, well, perhaps not ease, but at least with efficiency. Unfortunately, fibromyalgia and chronic illness merrily fucks with our rings.

I have come to learn that, according to the laws of physics, it is inevitable that, at some point, there will be several triggers, a massive flare will ensue, and all of the rings will fall to earth, one after the other, as we watch, seemingly in slow motion, our entire world falling apart. It is tragic. It is devastating. We think there is no possible way that we can go on. And then, slowly, we pick up one ring, and then another and another. And then it is time to start juggling all over again.

Most people have a juggling act: their rings are generally made up of something like career, relationships, family, health, and religion or spirituality. Those of us with chronic health conditions have an additional set of rings to juggle and discovering what those rings are is imperative to managing our pain and living a life with meaning.

These are the rings I must juggle daily, and in no particular order, to maintain a purposeful life: diet, exercise, family, reaching inward, reaching outward, pain management toolkit, home, sleep. Each of these requires regular attention and care. For me, my over-active neural pathways are just as affected by any dereliction of these rings as is my heightened awareness to sound and light and pain during a fibro flare.

This is my world, these eight rings that rule my life. Each is necessary for the others to survive. And so, as my constant focus is to each of these rings, so will be the focus of the posts within this blog.

Posted in Environment, Exercise, Journal, Conversation, Op-Ed

Budding Into Life Again

Rooftop Deck ~ Photos by SeeJayneRun.com

This is my favorite time of year: pre-summer, as spring is such a late arrival in my neck of the woods. I’m blessed to live in a part of the country that gets lots of sunshine year round but the cold and wintry days can still get me down. As with everyone, and particularly those of us with chronic conditions, the weather can play an enormous role in our daily physical and emotional health.

The science may tell us it’s a coincidence but most of us who have broken a bone, suffer from arthritis, or have had surgical repairs with metal can be excellent weather forecasters. We can tell you when there’s a change in the barometric pressure, not because we’ve seen the local forecast, but because we can feel it in our joints and bones. The country seems to have gone crazy with its recent erratic weather changes and I’m good and ready to get off this particular roller coaster. Hot as blazes one day, serious snowfall the next; that mess melts and then several days of severe thunderstorms and tornadoes touching down all over the place! Every time the barometric pressure changes, I can feel it in all of my surgical sites and it just radiates…well, everywhere! The cervical site leads to migraines and the lumbar site radiates down both legs. Sleep is impossible and when the changes are so constant and erratic, there’s never a break in order for the body to stabilize. Discomfort turns into misery and day follows day follows day.

But now…I think…I pray…summer is almost here to stay. And perhaps there can be some balance again. That, my friend, is a damned good feeling! When you’re in constant pain, your world can become very, very small, so opening all the windows and doors, bringing a little sunshine and fresh breezes inside and being able to merge with the garden is extremely liberating. Simply sitting on the front porch with my morning coffee brings me one step closer to being out and about in the world. I may not necessarily be going anywhere, but…well, I am slightly less removed.

The balmy days somehow give me strength and confidence again so when my little terrier looks at me longingly with his leash hanging from his mouth, I actually feel like, yes, maybe I could be taken for a walk today. And maybe we can go a little further than we did yesterday.

When we return from our stroll, even though I’m out of breath and need to lie down now!, the swing in the garden awaits. I collapse onto the soft cushions as Bentley noisily laps up a refreshing drink. The pain is loudly acknowledging itself but it’s manageable. The sun is shining, the breeze is cooling, the fountain and wind chimes are tinkling and the aroma of lilacs intoxicates me. And Bentley and I are a part of it all. Not a bad day.

Posted in Reaching Out, Recognition

Congratulations to Kim!

Photo by Jason Leung

Massive kudos to my new friend Kim, fibromyalgia advocate for awareness. She produces a terrific blog that is as much fun as it is information-packed and I have recently enjoyed taking a deep dive into it. You can find her at I Tripped Over a Stone and make certain you do because it’s worth the stop. She has just been nominated for and accepted both The Blogger Recognition Award and The Sunshine Blogger Award. Woo Hoo! You go, Girl!

Kim has been instrumental in helping this newbie blogger get her act rolling and somewhat together and I am both humbled and grateful. Thank you Kim and congrats on the cool blogging awards!

Posted in Journal, Conversation, Op-Ed

Morphing Into the Mad Queen: Pain Can Make You Crazy

Photo by Gabriel Matula 

I want to let you in on a little secret. Pain can make you crazy. I’m not talking about a journey into irreversible insanity, Mad Queen-style, although, I’m sure that’s possible. What I’m talking about is temporarily losing your filter (and maybe just a little bit of your mind.)

I’ll never forget a conversation a friend and I were having years ago regarding suicide. An acquaintance of hers had ended his life after an accident had left him in a bad way. We didn’t know any particulars. My friend said that his actions were incomprehensible to her. “He still had his brain,” she said. “He still could have had a productive life.”

Well, maybe, maybe not. I am certainly not advocating for suicide. But I am advocating for understanding and non judgment. For after living with chronic pain for nearly two decades, I can tell you something with absolute no nonsense certainty: Pain can make you Crazy. It can also make you Stupid, Overly-emotional, Over-reactive, Unreasonable, Irrational, Unfriendly, Non-responsive, Forgetful, Irresponsible, and a Host of Equally Undesirable Traits that I cannot at this moment easily recall. So, yes, you may still have your brain, but all too often, it’s certainly not serving you at its best and fullest capacity.

I would generally describe myself as a polite, kind and gracious woman. A bit of a Southern belle with spark. But after I’ve been battling non-stop pain for hours or days, look out Sister! I can be ultra snarky, irrational and downright mean.

My God, I don’t mean to be. Almost instantly after I’ve lost my cool, I’m desperately sorry that I’ve hurt your feelings. And I promise you that hours after you’ve finally gotten over it, (and in some cases, months after you’ve long forgotten it) I’m still beating myself up for being such an ass, because I know that I’ve hurt you. But I’ve been hanging on for dear life for so long, that sometimes, I just erupt, and you, Poor Thing, just happen to be in the way.

This has been a particular challenge for me on this journey. For I have lost two irreplaceable friendships because of this. Both times, I erupted at an undeserving (of my rant) friend. Both times, I was in extreme pain and heavily medicated, yes, but that’s no excuse. (I’m often in extreme pain and heavily medicated and you’d never know about either one!) But seriously. As much as I may want to use that as an excuse, I must own my behavior. It was not fair to these dear friends and I will always feel regret over their loss. To his day, the emptiness their absence has caused in my life still haunts me.

At times, I have lashed out at loved ones in times of stress. Of course we all do this. After all, we’re human. But for those of us with chronic and invisible illnesses, those on the other end of our tantrums are often taken unawares. One minute we seem (and look) perfectly normal. The next minute, we’re riding our broomstick and about to summon the flying monkeys.

I try to temper my moods by staying in balance (another topic, another day), but it’s not always easy and it doesn’t always work. My husband, forever after known as My Guy or MG, knows now that if I’m in trauma (out of control pain), he doesn’t bring up certain topics for discussion. He knows he’s not going to get a rational, well thought out response as he normally would but an emotional one that probably won’t hold much water.

My Guy has been on the receiving end of a tirade because he brought me the wrong beverage. Onlookers would be thinking what an absolute Bitch I am for treating My <poor long suffering> Guy to such irrationality. After all, when I asked for the (okay, different) beverage, he went and got (okay, the wrong one) and didn’t respond with, “Go get it yourself! What? Your back broken?” Well, now that you mention it… What MG thankfully understands (and the onlookers couldn’t) is that the beverage, wrong or not, has nothing to do with the tirade. The beverage is just the proverbial last piece of unbearable straw for this poor camel’s broken back.

Thank God, My Guy and most of the people in my life who have borne witness to these instances have accepted my apologies and understand my situation. One of the most brilliant and aware things My Guy will do in moments such as these is ask, “Is that Jayne speaking or is that The Pain speaking?”

Whoa! I can then generally stop myself, take a step back and review what I’ve just unintentionally said or done. Nine times out of ten, this brings me back into focus and instead of blindly reacting, I can separate myself from the pain and really think about my response.

Here’s a brief aside in understanding those of us in chronic pain: because the pain is always with us, the only way to stay sane is to try and ignore it. Sometimes that doesn’t serve us well, though. All too often, when we are attempting to ignore the pain, we’ll spend too much time pursuing an activity that exceeded it’s comfort zone 30 minutes ago, or we’ll get so caught up in a conversation / movie / book that we don’t realize the pain has suddenly escalated from a manageable 6 to a screaming 9. Now, it has nothing to do with what you are doing or saying. In our head, we’re in Panic Mode, trying to keep ourselves from falling off the Precipice. Sometimes we can tell you what’s happening, “Wait! Hold that thought. I need a pain pill / ice pack /heating pad / my mommy.” Other times, those unfortunate times, we and our pain have fused into one and we’re the ultimate Crab Ass.

Thank God, I have had the strength to search out remedies to manage these moods when the pain becomes intolerable. And most of the time, I can do so very well. Sometimes, I just may be short during a conversation. I’m really not tracking what you’re saying very well, but responding thoughtfully and giving you my full attention is just not possible at the moment. I may not even realize what’s happening. It would be such an easy solution to say, “Time Out!” and have everyone understand what that meant, me included. Unfortunately, the snark has reached my brain before the over-saturation of pain has and I’ve just introduced you to my non-desirable side instead of excusing myself five minutes ago and locking myself in the closet.

For those of you who have been on the receiving end of my pain and still love and accept me, I thank God for you from the bottom of my being. For those of you who are in the Undecided Category, please accept my sincerest apologies and give me another (an another) chance. And for those of you whom I have pushed away, please know that you will forever be in my heart, that I miss you desperately, but I understand your need to remove yourself from my life. Should you ever wish to return, my door is open and you are welcome to enter.

Posted in Journal, Conversation, Op-Ed

No Apologies Necessary, Dammit!

Photo by twinsfisch

So this week I had a dental appointment. But when I woke up in the morning, I couldn’t get out of bed. I had had another night with never ending pain and I felt traumatized by dawn. There was no way I could do anything more that day than lie in bed with my best friend, Audible. When I called to reschedule the appointment, though, I inevitably did something I usually do and hate myself the entire time I’m doing it. I lied. I mumbled something about having caught the latest crud that’s going around. “Oh, I know just how you feel,” the receptionist said. “I had that last week.”

I hate the lie. I feel that it diminishes me. But saying, “I have to cancel
because I can’t get out of bed,” or “I’m in pain today,” doesn’t sound like a valid reason. What would the receptionist have said to that? “Uh, okay…” and she’s thinking, “What the hell? Are you hung over? Your husband knock you around last night? Feeling a little lazy today with the rainy weather?” It just doesn’t work.

At a few different points in my life, I struggled with debilitating anxiety. But I never announced that I was having an anxiety attack. That was too embarrassing, too shameful. I’d always figure out a way to cover it up. And I’m certain that oftentimes, the cover up made me look less respectable than had I simply told the truth. Unfortunately, the truth was taboo. And all these years later, the truth still seems taboo. We must change that!

Having an Invisible Illness is bad enough. Having always to try to explain it is the icing on the cake. (Irony here, in case there’s any confusion!) It is generally not acceptable to decline an invitation, cancel an appointment, not go to work, insert obligation here, because we are depressed, in pain, have overwhelming anxiety, again, insert malady here.

It took a long time but my inner circle of very close family and friends now understand my key words: bad day, bed day, pain day, flare up. But I don’t know how to handle the rest of the world. The new couple we met and adored who want to plan dinner and the theatre when that show comes to town in 6 weeks. Let’s grab the tickets now before they’re sold out! The colorist who I’m dying to have do my hair (cute little pun there, huh?) but is so far booked out and frowns on late cancellations. I understand. She can’t afford to lose payment for that time slot. But getting my hair done is pricey, especially when I’m paying and not getting it done.

Yes, I know that I’ve cancelled on you three times in a row. I know it’s inconsiderate. I know it’s irresponsible. But I didn’t intend to do it. And the only other option is never to schedule or plan again. That’s rather bleak. One thing that keeps most of us going is having something to look forward to.

Yes, these seem like minor beefs. First world problems. But I’m still resentful. I’m resentful because I have this mishmash of medical disorders that can’t easily be understood or explained. I’m resentful for feeling as though I always have to apologize or make excuses for them. And I’m resentful for feeling less whole than the next guy because of it.

I, Jayne, am generally (I’m human, after all) not irresponsible, unsociable, irritable, needy, inconsiderate, over-reactive or thoughtless. My pain is. I am not my pain. Let me say that again. I AM NOT MY PAIN! And I want the world to stop mixing us up!

Posted in Journal, Conversation, Op-Ed

Invisible Illness

Photo by Raphaela Vergud

We must change the conversation about how we manage, understand and accept Invisible Illness and Disabilities. Invisible Illness is any chronic illness or disability that does not necessarily affect the way we look on the outside but may, and most often does, affect every other aspect of our life.  I say change the conversation but bloody hell, is there even one going on? We need to start the conversation!

I have an Invisible Illness. And frankly, I am bloody tired of being Invisible. An ordinary rainy Thursday afternoon nearly twenty years ago. A comic strip banana peel-type fall. Injuries to the spine. And a life changed entirely. Will it be forever?

Most people have no understanding whatsoever of how much energy it takes to manage a chronic illness. My injury should have been fixable. After multiple surgeries and countless therapies, I should have healed and gone on with my life. But that didn’t happen. For some bloody reason that I am still waiting to be enlightened about, my body did not heal. Oh the medical people have given me a list of things I can rattle off at a cocktail party. If I were able to go to a cocktail party, that is. I can spew conditions like Occipital Neuralgia and Fibromyalgia and Chronic Fatigue Syndrome and Advanced Arthritis and Advanced Disc Disease and Spondylosis and Severe Depression and Post Traumatic Stress Disorder and Chronic Myofascial Pain and Neuropathy and Chronic Insomnia and, well, you get the idea. Bottom line, I have severe chronic pain and dear God, it is exhausting to manage. Even when it’s not there. Sound nuts? I agree! But it’s true. Every minute of every day is spent thinking about the bloody pain. You want to just put it out of your mind and get on with it but that’s impossible. For every decision you make will affect that pain, either now or later. Do I go to the grocery store now or tomorrow? If I go now, I won’t be able to shower and wash my hair later and I have that dental appointment tomorrow. If I do laundry today, I probably won’t be able to make that pot of stew I’ve been planning. If I go to Kermit’s birthday party, will I still be able to help my mom with her taxes two days later? Something as simple as deciding what to wear and then putting on makeup, fixing my hair and dressing can feel as though I’ve just run a marathon. I almost never go out of the house two days in a row. Not every day is like this. Some days, I actually feel quite normal. But I am so shell shocked from the previous cycle, that all I do is sit on the couch or read a book. I think, I should get up and do something, but it feels so bloody wonderful to not have my body going crazy and attacking itself, that I just want to sit there and take it all in. The peace. The calm. Will it last 5 minutes, 5 hours, 5 days? Or 5 seconds?

There is so much that I want to include in the Invisible Illness Conversation. I have wanted to say this stuff for a long time but I have never known where to start. Where is the beginning? When I fell? Or long before that? Maybe it’s okay to just start in the middle. And then go back and forth as we go on. I don’t think my story is going to change the way the world thinks. But I do think that all of our stories can.

Perhaps you’d like to join me on this odyssey, this journey, this path to understanding, accepting and learning how to live after the acceptance. Do you have an Invisible Illness? Is it debilitating? But since you’re not without a limb or sitting in a wheelchair or obviously disfigured, no one seems to notice, or understand, or even if they do notice and understand, they forget to remember?

One of my biggest fears about writing all of this down and putting it all out there is to sound like a whiner. That old saw, and I don’t belittle it for it is profound, the one that goes something like, I felt sorry for myself because I had no shoes until I saw the person who had no feet. There is always going to be someone who looks worse off. And maybe they are. In spades. But that doesn’t mean that our pain is any less. That our loss is any lighter. Perhaps the person with no feet has found the way through the pain and has discovered a life that is livable. That’s what this conversation is really all about.

Just because I cannot see your Depression, PTSD, Agoraphobia, Deafness, Multiple Myeloma, Multiple Sclerosis, the list is endless, doesn’t mean that it isn’t just as debilitating as the guy who just survived an automobile accident or the one who is sitting in the chemo chair. Just because the blood isn’t dripping and the arm isn’t crushed and the breathing isn’t labored, and the cancer isn’t taking up residence doesn’t mean that our struggle, our silent struggle, isn’t as debilitating. We don’t have to be at death’s door to be dying. Sound melodramatic? Perhaps. But if you aren’t really living, aren’t you, in essence, kind of dying?

Let’s talk. Will you share your story with me? Please join the conversation.