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.
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.
