The show is next week. I’m in a fairly good place with the costumes. At least I think I am. 🤔 I’m so tired, I’m probably not in the best frame of mind to judge the state of things.
Between now and then, I’ll also finish my last class and be ready to graduate with a wardrobe technician certificate from FIT! I still cannot believe it.
The other thing I can’t believe is what I did earlier today. By the time this goes live, I’ll have done something very rare, for me at least. I’ll have asked six people for help. Yup, you read that right. I’m actually asking another person for assistance. Six students, to be exact! And that’s even not all of it. I’ll be asking six more tomorrow! It’s a world gone haywire around here, LOL.
Over the weekend, I tried to get a decent amount of work done on one of the Broadway-themed numbers. Part of the costume is cut out handprints, to be pinned on their unitards. I managed 30 before finally accepting the swelling and pain of my hands as a sign that I should stop. As I contemplated the additional 48 that still needed to be cut out, I realized that there was NO way I could manage it on my own.
Part of me wanted to recruit my husband and daughter, but that seemed unfair and pretty ridiculous. That’s when I decided to do something I’ve never done with show costumes, especially when it pertains to cutting things out. I assembled packets of felt and a template. When the students came in for fittings this afternoon, I recruited them. Granted, my pre-asking speech was slightly scary and full of “don’t make me regret this” pressure, LOL. Not all of them wanted the job. But a few of the crafty kids jumped at the chance. Phew.
Normally, I keep my inner monologue in check by doing all of the work myself. No one is harder on me than me. But even I have to admit when enough is enough. My body is suffering. A lot. The crash that’s coming will be hard. And there’s nothing I can do about it. I’m just trying to take care of myself as much as possible to soften my landing.
Taking classes on two weeknights and on Saturday mornings, while working on the show from 9-4 every weekday, has worn me down a little bit. A lot. But when I think about where I was two years ago, just starting at FIT……. I am very proud of myself. It’s surreal and a moment I never dreamed possible.
We all need help, but how many of us admit it? I certainly don’t. Part of me doesn’t want to be a bother. The other part is a serious control freak. So allowing anyone near show items with scissors is a BIG deal for me. LOL. But even if these young dancers make nonstop mistakes, it’s not the end of the world. It’s felt handprints. It’s good for them to be accountable and helpful. It’s good for me to acknowledge that I’m not defeated, just tired, with limited reserves. My hands are arthritic. I have carpal tunnel and RSD. There, I’ve said it. I needed help and so I asked for it. There are only so many spinning plates one can manage.
I don’t consider myself defeated, ever. On my worst days, I’ve allowed myself a good cry. Dramatic, sad music from one of the many great composers – new and old – that I keep in my playlists for the appropriate “sorry for myself” sessions, playing forlornly in the background as I mourn my physical pain. Ok, ok… that paints a “WHOA, let’s take it down a notch!” picture. (Its accurate though, LOL). But never in those moments am I defeated. I’m having a setback. A moment. A day, or three.
But we get up. We get our kids ready for school. We make dinner. We pay bills. We go to work. We sometimes make it as far as the bathroom and back before needing a rest. We buy groceries. We care for our fur babies. We take walks. We make lots (and lots) of trips to doctors. We use wheelchairs, canes or walkers. We pick up coffee mugs, (a feat known to cause my own hands significant difficulty on occasion). We post our blogs late. (Ok, ok….that one was me). We breathe. We exist. In all of that, we’re not defeated. We’re surviving and, in doing so, we’re winning the game we’ve been dealt.
Wishing you people who help without being asked and people who gladly assist when they are. Wishing you chances to reboot, to give yourselves a break. I needed to do that a lot over the past couple of weeks, releasing the over-the-top expectations I’d set on my own work. In doing so, I released myself – giving me the space to even contemplate asking others to share the workload. It was a moment of healing and personal growth, one that I needed.
Be kind to yourselves. ❤️
Peace and painlessness,
As I write this, I’m immersed in planning the spring dance show. (I know! It feels like I was just writing about last year’s!).
In years past, I designed t-shirts that the kids would wear, making them with simple materials (translation: minimal/no budget). This time, we’re scaling waaaaaay back and using various costumes from our stock. While that might sound like a simple task, it’s actually harder! I’ve always been able to round out the show by creating those thematic shirts. Now? I need to find actual, existing garments to fit 64 kids, for at least 15 (addendum: it’s 27! 😳) dance numbers. Exactly. It’s a massive undertaking. Granted, some of the kids won’t be in every single routine, but it’s a lot of trial and error matching what we have – in various sizes – with students of various sizes.
So this week was spent going through every box, every bag, every everything. I’m more than halfway through the eighth grade. Next week, I’ll begin the process all over again for the seventh.
As I worked, I was moving items from the long hallway outside the dance studio, inside for further examination. During one of my back and forth’s, my knee popped. My left knee. Like, POPPED. It felt almost as bad as it did last August. I froze by the cabinet, holding on and praying I’d be able to walk to my chair about 15 feet from where I stood. Testing if I could make it, I let go and limped into the room and sat down. Wow. If I had thought for a minute that I’d only get a few months with this relief, maybe I’d have done something different. Probably not. It’s not like they offered me any other alternative. 🙄 But this is just…….. what’s the word I’m searching for? Ridiculous? Unfair? I don’t even know.
Since it was Tuesday when the Popgate II occurred, I still had to get to my evening class. Before my commute into Manhattan that evening, I moved carefully and slowly. My knee hurt but it wasn’t bad as it had been in the morning. But it sort of felt like whatever was holding my knee together was strained to the max. It hurt, but the sensation of weakness was more scary. Like it would snap fully with one wrong move. (UPDATE: Monday, May 14 – my knee is doing better, it just feels a little bit uncertain. I’m making note of what happens and when, so I can tell my pain doc this week).
Why doesn’t the shot prevent the pop?!? I’m asking a ludicrous question, I know. But seriously…. seriously. Why now? The rest of the week involved additional pain in my left leg. Mainly the back of my leg. An intense burning strain that starts about 2″ below the back of my knee and stretches down the back of my leg to probably 2-3″ above my heel. I’m of petite stature, so it’s not a large space, but the burn makes up any lost leg geography.
It started prior to the recent pop. I notice it when I’m on my feet for a while. It’s annoying at first, then it becomes something akin to having your name screamed over and over, even when you can’t answer the person screaming it. Beck. Beck. Beck. BECKY!! Ouch.
Since laying low and resting is absolutely not an option, I’m trying not to aggravate my knee, or the whole leg really. The aching sensation doesn’t flare up, it just exists, all the time, getting worse when I stand for too long.
Sometimes it causes pins and needles in my left toes. Maybe it’s a restless leg thing. Or a varicose vein thing. Or maybe it’s just plain old RSD tagging back in. I really don’t care what it is, just that it be stopped. As it’s already hard to sleep, adding this scenario just adds insult to injury. There’s literally no comfortable way to rest. So we move on, attempting to ignore it as best we can.
During rehearsal the other day, I attempted to stretch the leg as I stood, making notes and taking down names. It didn’t help. I just looked super weird. A couple of the kids asked me if I was ok. How much time do you have, kid? LOL.
There is no slow down. I’m in class on Saturday morning and Monday/Tuesday evenings. At least the Tuesday course finishes tomorrow night. Our show is on May 31. So, from now until then, we’re talking around the clock getting stuff done. My goal – read HOPE – is to be finished by the week before. I have no idea if it’ll play out that way, but I’m certainly going to try.
There are a few things way out of my control. I can only manage myself, so that’s my plan.
May you find ways to separate the controllable stuff from everything else, and handle it the best you can. Hang in there. I’ll try and do the same. ❤️🌸
Peace and painlessness,
Sunday, April 29
There are moments like tonight when I think I’ve stumbled headfirst through the looking glass, having just watched my mentor’s dance company perform. We’re applauding…. celebrating their hard work and the end of an exquisitely successful season. It’s surreal. I can see myself in this consulting, costuming role, but I need to pinch myself. It’s like living a double life. Do you know what I mean?
I’m here, supporting great artists. Clapping with hands that are sore. Knowing that when I rest my arms at my sides again, bilateral swollen lymph nodes will sharply remind me they’re there. Feeling so much joy but so much discomfort. Sometimes the balance feels so off, because most of the people on this side of the glass know nothing about what happens on the other. My creative, professional life vs. my life as a patient. It’s the intentional unknown that I’ve devised, not wanting to broadcast my problems to potential clients, or my current ones. My mentor knows – we’ve been friends for too long – but not the full extent. It’s a fine line, walked every day, by so many of us. I’m forever struggling to find my equilibrium on any given day. Is this a work day? A flare day? And on and on.
Sunday, May 5
There’s a steep cost of living this semi-balanced life. I pay in pain, fatigue and stress. Lots of stress.
Sitting in class yesterday, listening to my professor talk about potential work opportunities, I got caught up in thinking about the “what could be.” So caught up, in fact, that I forgot about the “what is.” Reality dictates that I anticipate every possible bad scenario when planning my creative work. It’s not as simple as “yes, that’ll work out perfectly.” It’s never perfect for anyone, I know. But things can get complicated. I’ve pushed through nearly every crisis and met the demands head on. But not without a heavy crash afterward.
Anyway, I got home from school and talked to my husband about it. Blissfully imagining the possibilities after the program is finished…. then I remembered I had to take my 12 p.m. meds. The spell was broken! The invisible “pinch me! I’m dreaming!” moment shattered, back to real life.
How many of you hide your medical lives from the people around you, if it can realistically be done. When I walked with a cane, it was harder to fake that all was well. Impossible, really. But now? I can get away with it, for the most part. At least until I’ve been sewing/making for a while and my hands swell up and get too sore to continue. Carpal tunnel and RSD effectively cracking the veneer of “I’ve got this” that I’ve created. (Cue frustrated speech bubbles of made-up angry words overhead).
Writing this blog has afforded me opportunities I couldn’t have imagined. A through the looking glass version of “what could be.” Being published, making connections with other health advocates, getting chances to speak with my fellow RSD-ers, as well as other folks living with chronic pain. Nothing beats it. And there’s no semi-balance required. I can move freely about the cabin! LOL.
It’s refreshing to join with others in this fight for awareness and acceptance. Over tea and cannoli one chilly fall day, I finally met one of of my long time readers – someone I’ve followed and respected for decades. This was literally like talking to a lifetime friend. So many shared experiences and struggles, as well as just chatting about life and our kids. Talking about the good and bad with others who know exactly how bad it can get? Priceless. Even merely imagining possible collaborations to further our causes is a gift. It’s validating.
I know I use that word a lot: validating. It’s incredible important to me. When other people hear your story and understand it? There’s nothing like it. You feel human again. When they listen and look at you like nothing could be weirder? It’s soul crushing. Forget balance, or even semi-balance. It tips the scales over completely.
I really want to hear from all of you, how you walk the tightrope between the various sections of your life. What are the costs (physical, emotional) of navigating them? And I’m talking about every version of you: work you, in front of the family/friends you – all of it. The good, the bad and everything in between. Please share your experiences with me.
This week I’m sending a wish for balance and – you know it! – validation for each of you. Wishing you calm and no pain. It’s a big ask, to be sure, but I’m going for it! 😉
Peace and painlessness,
What a week this has been. Now that it’s Saturday night – and I’m comfortably ensconced in my pj’s, enjoying Netflix and gummy bears – I’m looking back like, “how the heck did I manage that one?!?'”
Over the past five days, I’ve been hurting. I’ve noticed my lymph nodes getting swollen… and painful. Always under my right arm first, I’m not sure why. It was that way when my first symptoms appeared, back in 1998. The hard, golf ball-sized lump that hurt so much, I could barely rest my arm at my side. Once the prednisone took effect, the swelling gradually subsided. It’s never been that size again, thankfully. But I know when I’m flaring as a result. It’s my tell-tale sign, before anything else.
But now? It’s right and left. And along my jaw and throat. As if that wasn’t annoying enough, there’s a tiny spot on my right thumb that feels like the bone is bruised. It’s been sore for days. But there’s no mark, not even a bump. I can’t explain it, as much as I’ve tried to think back and remember if I got injured in some way. I’m pretty sure the thumb is an RSD thing. It just makes more sense.
Maybe I’m just tired and run down. (Obviously, I’m tired and run down – I barely sleep. I can’t even believe I just posed that as a maybe scenario). 🤦🏻♀️ Palm slap to the forehead. It’ll have to be via emoji though, my skin burns too much for a real one.
Last Tuesday, I started my spring semester. (The last before I get my certificate!) On my way into the city, I was reading and my too-long bangs were covering my eyes. Sweeping them aside, I felt like I was touching a sunburn. Not a dramatic one, but a slightly sore, couple of days old one. Thinking back, I guess I was peripherally aware of my skin changes during the preceding days. Gently feeling the rest of my scalp – discreetly, so as not to look like a complete weirdo on a NYC train – I discovered that it was diffuse but limited to the left side. Seriously?!? Now?!?! But then, why not? It’s not like I had better things to do than flare, right? The week just got better from there.
I’m complaining, sorry about that. My forever present, inner monologue is working overtime, echoing bitter sentiments of old: “why me? Why now?” Blah Blah Blah. I don’t want to hear it spoken aloud and absolutely want to avoid my inner voice using it in her one woman show. But it gets tough.
Maybe the weather changing, getting warmer – FINALLY – had something to do with it. I can’t be sure. But I’m also concerned about people close to me. There’s a lot happening right now. Stress doesn’t help a flare. And we never lack for it.
Never a dull moment right? True for everyone. No one carries the monopoly on hard times and worry. We all share the “most-challenging-things-to-deal-with-in-a-small-amount-of-time-with-limited-resources-while-feeling-like-crap” award.
The first time I read the quote: “Everyone is fighting a battle we know nothing about,” it validated me. Almost as if the author was defending people with RSD and other so-called “invisible illnesses.” Sure, I look ok. “But you don’t look sick!” (Insert eye rolling here).
That quote means different things to different people. My immediate association is with health, for obvious reasons. But whether it’s health, wealth or happiness, it resonates widely.
I’m battling the flare, worry, nerves, excitement, panic (same as worry?), planning ahead, worry, fear of letting people down, fear of succeeding, fear in general. (Pretty sure some of that was redundant🤷🏻♀️). All this fear talk stressed me out more, LOL.
Can you tell it’s been an off the wall few days?!? When I’m not feeling well, my physical and emotional balance falters. And the next few days promise to keep me running. A lot. Ugh.
Wishing I could leave you with something more inspirational. But I’ll say this, I acknowledge each of you. I respect your journey, with its burdens and battles. Everyone sees the happy parts. I believe we also need to see what hurts and validate that.
Sending you positive vibes and hopes for a peaceful week. ❤️
Peace and painlessness,
Hello friends! I want to start by thanking you for the wonderful feedback on last week’s post. It was easy to write but I kept revising it. Seriously, it went through at least twelve major re-do’s before I finally hit the “publish now” button – mostly out of fear that I’d change it again.
Anyway, on to the here and now. The past few weeks, (months, years), have been spent fluctuating between feeling mostly ok and managing painful flares. This is life with a chronic illness as you all know, not major news.
I was struck by something Dave said not too long ago. When I was experiencing the nonstop palpitations and dizziness (they’re less frequent now), we talked about my fear of dying. Mainly the fear that the PFO had somehow expanded and there was a clot; that I had a heart attack and didn’t realize it, and on and on. He sat listening – patient as always – then said, “You’re so used to living in the extreme, it’s hard to imagine it being anything other than something so dramatic. It’s probably none of those things.” I agreed outwardly. In my head, I was convinced he was was wrong about my heart. But that seemingly simple statement….. it got into my brain and stayed.
After reading the results of my tests, the doc tried to reassure me. As I sat there, I turned and saw my husband nodding as he listened. Then he turned and smiled calmly at me, obviously relieved. I wanted to shout at both of them, “it CANNOT just be extra beats! Tell me the truth! I’m dyyyyyyyyyying!” I mean, my imagination could win an Academy Award, my inner monologue could get an Emmy for “most dramatic ridiculousness.” I’ve gradually accepted the cardiologist’s words as truth.
In the weeks since, I’ve been talking to a dear friend about her health and overall well-being, she’s been dealing with a lot. After hearing how she’s felt, the fears and theories about her latest symptoms, I immediately switched into nurse mode. While there are similarities to scary diagnoses, there could also be simpler explanations. Easier to manage medical scenarios, I mean. Suddenly, in my efforts to reassure, I found myself repeating what Dave had said to me. It was like an Oprah “A-ha!” moment. I got it.
We do spend every day, 24/7, living in the extreme. When you’re diagnosed with something painful, unusual and invisible? It does terrible things to your imagination. So, when something seemingly “normal” happens, our rare illness radar starts screaming: Is it a complication? Is the RSD spreading? Is it ————-? (Fill in the blank with another serious medical problem). We literally cannot help it.
And, the sad thing is, years of having those symptoms actually be complications, RSD spreads and new illnesses have trained us to respond in the extreme. It’s trained us to react like firefighters, always ready to deal with what comes. Why? Because we need answers quickly. Because we’ve been burned by docs taking too long to get back to us; by ineffective meds that don’t touch the level of pain searing through our bodies; by people not believing us. So we have to advocate HARD for ourselves. This is what living in the extreme has done to us. It perpetually tips the scales toward the dramatic and terrifying. And that’s incredibly hard to rein in.
I remember after my initial spinal surgery, to repair the congenital defects, my doc telling me that “it went well overall…. but..” That’s JUST what everyone wants to hear. But what?!? He reviewed the follow up MRI and said, “You’ve developed arachnoiditis.” My response was getting hysterical laughing. Seriously. I thought he was joking. Spider spine anyone?? That was my first mistake in that conversation, thinking he’d joke at all about the surgery performed to prevent what he said would be near-certain, eventual paralysis. This was followed by my asking him to explain what sounded like a horror movie title. Then wishing it was a horror movie title. Then openly weeping. I’m pretty sure I said something like, “You’ve GOT to be kidding me.” But he wasn’t. I mean, it felt like someone was just making my life up as they went along, having a grand old time throwing me under the bus. Repeatedly. Just when I thought nothing weirder than RSD could touch my life…. believing that was my second mistake.
Extreme to extreme to extreme. I’m not even sure I view anything, medical or otherwise, through “normal” lenses anymore. What’s normal anyway? My norm, and that of my fellow RSD-ers is anything but average. When asked to describe our pain, the adjectives we use make people squeamish. People shouldn’t want to rip their limbs off to feel better. I’ve said that I wanted to do it, many times. Countless others have too. It’s extremosity at its worst. Or one of its worst. It’s different for all of us.
The norm where I live is way over the top. My husband is right. My lenses are tinged with nearly two decades of managing life with an extreme chronic illness. My world view has adapted to cope. Speaking with folks who also have RSD, who live with illnesses that far too many people know nothing about, it’s become even more a part of my every day. It’s made me less of a freak and more a part of the masses. We’re all in the same club. Sitting in medical offices, listing my problems…. it all sounds so run of the mill now. But meeting young, eager residents constantly reminds me that it’s not. That’s a reality check. It’s reflected in the looks people give me when they ask about my RSD experience. Reflected when they don’t know about RSD, that is.
I want to get a t-shirt that says, “Living with extremosity, since 1998.” Maybe I will.
Wishing each of you a calm week, nothing too dramatic. My fellow warriors know that even that can mean an Edward Munch, “The Scream” moment.
I’ll keep a good thought that it won’t.
Peace and painlessness,
When I started this adventure, I made a promise to provide as thorough an account as I could about living with a chronic illness.
If I’d done it ten or more years ago, it would have had a very different tone. Angry and probably without as many doses of hope. But only because I couldn’t see the other side of the mountain, in a manner of speaking. My pain was out of control.
When this mess started, I was a mess. I’d barely begun to settle into a job I’d worked really hard to get. After paying dues elsewhere, my career spread out before me like a beacon. The future seemed set and it was everything I ever wanted.
To lose it all, forced to walk away? A short medical leave that turned, with sharp finality, into a career ended? The burn of it. The sheer torture of not knowing what was going to happen next was indescribable. I was a broken person. Struggling with trying to keep it all together – balancing the daily, nonstop medical crap with the unparalleled joy of seeing our baby girl growing up. My husband encouraged me to write it all down, to tell my story. At the time, I just couldn’t imagine getting out of my own head enough to speak about, let alone write, my thoughts for everyone to read. They were ugly and resentful, dark and lost – all directed inward. Why didn’t I change doctors? Why didn’t they catch this sooner? What the hell is RSD and why hasn’t anyone heard of it? I was a nurse, for crying out loud! I cursed my heel spurs, nervous system and everything else having to do with my body – so busy betraying me that it forgot we were stuck together.
So, no, I couldn’t blog then. Maybe I should have. After a few half-hearted attempts, things got going and writing things down became cathartic. Actually, the thing that made it most therapeutic for me was hearing from all of you. People saying that they understood because they were dealing with the same issues – THAT was a revelation. From the newly diagnosed to people who’d dealt with RSD for decades, all of you educated and humbled me with your stories. Hearing from extraordinary caregivers did as well. And, of course, for the people who had no idea what I’d been dealing with, it was a shock for sure. The path ahead seemed clear. I had a new beacon to guide me.
It isn’t easy for my loved ones to read every post. Some of the blogs bring painful details to light. It’s upsetting, I get that. But it’s the reality of the situation, my reality. There’s no sugarcoating it. And I don’t have the luxury of leaving things out, not if I want to keep my promise. Not just to all of you, but to myself.
I write this, first and foremost, to let my fellow RSD folks know that they aren’t alone. I write for myself. I write for everyone with a chronic illness, especially for those of us dealing with chronic pain. And I know I have readers without all of this medical drama. You are a wonderful, unexpected bonus.
The support I’ve received since my first post is so lovely. It’s hard to put into words. But I’m so grateful. As a person who lived life in the shadows for so long, not allowing any outside folks in, it’s extraordinary standing in the light. Here, I’m not a freak show. I’m not judged. Being able to speak openly and honestly about all of this is just….. well, it’s probably one of the most important things I’ll ever do.
I’m a wife, mother, daughter, sister, friend, crafter, costumer, student, writer. A die-hard New Yorker. I find ridiculous things funny and cry over everything. I obsess over movies and music. I talk way too much and way too loud. I’m addicted to coffee and Haribo Gold gummy bears. My Starbucks is on speed dial, LOL. My laugh ranges from cackling to an almost silently deflating tire sound, a feat I still can’t explain. I adore my ridiculously close family. I’m there when you need me. I try to lead with kindness. I’m a complicated, deeply flawed human being. And I have RSD.
I’m painintheBECK, and I use my voice to advocate for myself and others like me.
Thank you so much for coming on this journey. ❤️
Peace and painlessness,
It’s always great to go on adventures with my husband and daughter. I’m convinced that he is the trip whisperer. Seriously. He manages to find amazing accommodations, side trips and great food along the way – EVERY time. And our gal has been a great traveler since birth.
We started taking long road trips with her when she was about two months old. Did we bring every single baby item from our apartment? Yes, yes we did. Pulling up at my in-laws with about an inch of space between us, my father in law said, “you do know there are stores out here, right?” LOL.
I pretty much still pack like that. Although there was a time – before motherhood – when I could throw a weekend’s supplies in a backpack and just hit the road. What happened to that girl?!?! Now? My suitcase is easily the heaviest by 15 pounds. At least. Why? I don’t even know. I think I pack like the apocalypse will strike and I want to be sure we have enough stuff to get through. 🤦🏻♀️
All of the planning before a trip and unpacking afterward reminds me that chronically ill people can’t just pack and go. At least no one that I know. Anyone who takes long term medication must plan ahead. Do I have enough pills? If not, can I get a prescription filled before I leave? It’s a serious issue and can be nerve wracking at times.
When I had a morphine pump, my refills we’re scheduled every four weeks or so. If our daughter was on a school break, I had to be sure to move the drain/reload appointments to the week before we went anywhere. I was terrified of the meds running out, even though the chance of that was super thin. I was taking my oral meds back then too, but it didn’t matter. If I couldn’t get to Manhattan quickly to see my doc, I had to plan ahead, as much as possible, to take care of myself.
A few years into having it, my new doctor asked if I had the pump adaptor for emergency booster doses. Ummm, NO. No one gave me that when I’d had the surgery nearly four years earlier. It was an expensive piece of equipment but he gifted it to me. I only had to hold it over the pump site on my abdomen. It would communicate with the internal computer and release an extra, tiny dose of morphine. I could only do this a couple of time a day, (when I did it at all), but it did help. And it was a comfort, knowing that I could get pain relief on the really bad days.
Now I’m only on oral meds, taking 12 pills and 1 vitamin over the course of the day. I make my trays for the week, carefully counting my doses to be sure I’ve not made any errors. It’s happened and I’ve learned that I have to be fully focused on the task at hand.
Before any excursion that will keep us away from home, I calculate how many days I’ll need and then allow for extra doses, in case I have a flare. In this case, I packed for the five days we’d be gone and added three more, in case I dropped a pill (that’s happened), had a flare (that too) or if we ended up away for an extra day (yup). On one trip, years ago, I miscounted one of my prescriptions (how, I don’t know) and the hoops I had to jump through to get three days worth we’re crazy, mostly because we were in another state. And it wasn’t even an opioid script. We managed it but I learned my lesson.
On this trip, I was awakened at 3:30 a.m. by a severe burning in my left big toe. Just that one. It felt like someone was holding a lighter against it. The pain was so bad but I couldn’t do anything to make it stop. I woke up with tears in my eyes, thinking I’d been dreaming the whole thing. Then I realized it was actually happening. We were in a hotel room, there was no where for me to escape to so I wouldn’t disturb my family. So I carefully limped to the bathroom and stood, silently screaming at the reflection in the mirror, for the better part of an hour. My toe was red, like someone had been holding a match or a lighter against it. But no, it was just the RSD, reminding me that it can give good days and take them back just as easily. After that hour, I went back to bed, cursing that toe and the whole situation. That morning, I carefully put my shoes and socks on, feeling the remnants of the flare for most of the day. It gradually eased up. Thank goodness. We had a lot of walking to do. It ended up being a great day and I powered through it, like always.
It’s not only the big trips that are difficult. Sometimes, just leaving home for short errands is tough for people with chronic pain. Do I have the energy to go out at all? Is my pain under control? What happens if I flare while I’m out? It’s not as simple as, “hey I need a gallon of milk, I’ll just run out to the store.” And for those of us living in areas where driving is an absolute must, do we feel well enough, safe enough, to get behind the wheel? Will there be parking or do I have to walk a long way from the car to the door of the market? These are all things most average folks don’t have to think about. Not in the same way, anyhow.
I’m fortunate to live in the city. There’s at least ten corner delis, a supermarket (that I loathe) and a Walgreens nearby. Anything I need is a short walk away. But sometimes that short walk might as well be the length of the NYC marathon. Especially when my feet decide to burn and ache. But I power through because, emotionally, I have to.
Getting home from a long trip usually involves a major crash for me. I had a bad migraine for most of the week, rendering me sensitive to light and sound. Was it stress induced? Was I tired beforehand? Probably. Yes. Ok, I’m sure that was it. But it takes a toll on my body in ways that adds insult to an already grievous injury.
I don’t want to be the person who ruins the adventure. The one who says, I don’t feel well. There are two other people involved here, and they have the right to enjoy themselves. I am one giant block of excess baggage. It’s true. For the first time ever, I encouraged them to go somewhere without me, a film. They hesitated but agreed & it made me so happy. I curled up in bed and slept while they were out. Later on, they picked me up and we went for dinner. It was a good night all around. They had fun & I allowed myself the time to rest, without infringing on their evening. That was a victory.
We don’t always admit when things are too much. Many times we think it’s better not to say anything. People don’t understand or they get annoyed that we’re “complaining” again. So we go on, at our own expense, inviting inevitable painful consequences. That’s no way to feel. We shouldn’t have to do that. I’ve heard hundreds of stories where this exact scenario has played out, at the expense of the person in tremendous pain.
I’d love to hear more stories where people understand. Actually I don’t want them to just understand! I’d love for my fellow warriors to be supported in their admission, to be fully accepted – respected – in those moments. So many – far too many – aren’t. I dreaded saying that my head hurt too much to leave the hotel, for fear they’d miss the movie. I took a chance and they did too, by going anyway. I’m so glad they did. I wish it was as simple for everyone.
So my takeaway from the week: practicing on-the-road honesty. My family knows when I don’t feel well at home, there’s literally no reason to keep it from them when we’re away. The other thing is that I packed well. I didn’t need extra meds, but I was prepared. I used everything in my massively heavy suitcase. Pretty much. Almost. Well….. all that matters is that the zombie apocalypse DIDN’T happen, but I would have been prepared and dressed well for it. 😉
Wishing each of you true honesty in your relationships, endless respect for where you are in this journey and calm. You deserve all of it. ❤️
Peace and painlessness,