My Guy gave me this card many years ago and I have framed it and placed it in our meditation room. Because I find it so heartwrenchingly beautiful, I move it around often. Sometimes it’s on the bookshelves; sometimes the refectory table. Then one day, it’s on the chest or gets moved over to the end table. By moving it, I am constantly seeing it anew and it’s not just blending into the decor. I need to be reminded of this constantly. Life is not only lived in the good days. It’s lived in the bad ones, too. And EVERY day, I am making a transformation into a better and stronger and more beautiful me! I am a butterfly. And so are you.
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.
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!
This is Riley. Yesterday, he traveled on his final journey. He was 15 people years old. Or, if you’re a Silky Terrier, 76 years.
You may wonder what the life and death of my little dog has to do with chronic illness. Nothing. Everything. He was a part of my journey. And now he is gone.
In 2004, we were preparing for what would be the first of several spinal surgeries. My husband, a professional chef and educator, works long hours and we have no family nearby. So we decided that a small dog would be a smart addition to the household. Yes, we had a cat, but Max, though very sweet tempered, definitely had her own agenda. I wanted a buddy, a cuddling pal, a walking partner when the time came. A puppy would be a comfort and good company as I recuperated.
Except that we got far more than we bargained for. I did about six months of research on breeds and finally decided upon the Silky Terrier. These smart, highly trainable, non-shedding dogs could easily adapt to my activity level and were not known to be “yappers”. I was hoping for a sweet puppy whom I could train to do his business outside, socialize well with other dogs and people, heel on a leash, and snuggle and cuddle in front of the television. What I didn’t expect was an old soul. A wise and loving bundle of joy wrapped up in the silkiest and most sweet smelling coat imaginable. He was by my side as I recovered from five spinal surgeries, attached to my hip as I lay in bed. During the long dark years of insomnia, he kept vigil with me throughout the endless nights. When the pain overwhelmed me and all I could do was sob, he’d gently kiss my face to let me know he was there. Just one or two little licks with his sweet soft tongue.
Riley came to live with us when he was 8 weeks old. He was smart and attentive. He calmly told us what he needed when he needed it and then waited patiently for us to provide, confident that we would be there for him. And he was always there for us. He showed us how to be at peace when we had forgotten how. How to accept and just be in the moment. When My Guy and I broke and let all of the physical, emotional, financial, mental, social, and environmental crap that inevitably accompanies chronic illness, finally get to us and the only way we knew at the moment to deal was to rail at each other, Riley, who always wanted to be wherever we were, would calmly stand up and walk out of the room. He didn’t bark or run or cower. In his way, he simply told us to knock it off, calm down, find a better more effective way to communicate and cope. And we did.
Riley was all boy. He was an ideal travel companion. He had a slender, elegant build and a regal stance and even though he only weighed 12 pounds, he was a powerhouse. He had such personality. He feared nothing, he never complained, he accepted whatever the situation happened to be and simply got on with it. If only I could live my life as he did.
In his last years, he lost his sight and could no longer run and play. But he was able to navigate his way through the house and yard well and his temperment never altered. When he became ill, he needed more from us as his days became more difficult but he still never complained. On his last day, he very clearly told us it was time to leave us and he took his last breaths as he lived his life: with calm, peace and dignity.
My arms ache to hold my little guy. To feel his soft coat against my cheek and smell his sweet puppy smell. I pray I don’t forget the lessons he imparted, the love he freely gave, and the peace I always felt in his presence. Sleep well, little one. I am forever grateful for your friendship. But I’m gonna miss you like hell.
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.
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!
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.
I am not sure where I’m going but thanks for joining me!
Good company in a journey makes the way seem shorter. — Izaak Walton