December 14, 2016
JuggerBaby has been transformed partly into the Unstoppable JuggerBaby with the addition of a cast. It’s a club that’s bashed about with great vigor, never mind who gets in the way. It’s made zir approximately 15% more reckless. It’d be worse but ze hasn’t discovered the extent to which ze can take advantage yet. Cross your fingers that ze doesn’t catch on before it comes off.
We just hope that amid all zir fun, ze is also healing up well.
The really annoying thing is that ze has been congested for about two months now, and so have I, and I don’t know what it’ll take to kick this dratted thing. Ze is taking Zarbee’s for the resulting cough because there’s nothing you can really safely give a kid zir age, but it’s not that effective. We still have reports from daycare that ze is coughing a lot during zir naps, and every night, it wrenches my heart to hear the hacking cough issuing from zir crib.
Since the cold set in, I’ve been doing remarkably well. I was pretty sure I’d adjusted to San Francisco type weather. Then I wasn’t. This Sunday’s temps were exactly the same as they had been for the last two weeks but this chill went straight to my bones, then from there zapped my muscles so that nothing from neck to toe didn’t ache. Literally down to my very toes and the tiny bones in there – ache ache ache ACHE.
It was a point of pride that I’d only had to bundle up to endure the ever-so-frigid days and nights that drop as low as (horror! gasp!) the 40s and 50s. I know, I know. But look, I’m from the tropics, genetically, this is unnatural for my people. I’d adjusted mostly but my fibro gets eccentric at times. All this wind-up means we had to run the heater for more than ten minutes. We had taken to running it for a little while to take the chill off since JuggerBaby can’t wear sleeves, and then leaving it off for the night, and it makes me grumpy to know that we had to run it longer just so that I could feel mostly human again. I know it’s not a big deal really in the grand scheme of things but there’s that knee-jerk frugal reaction of no! don’t waste money like that!
Meanwhile, PiC’s got a thing going on with his back, and his vision (unrelated). I’m hoping that it’s nothing serious, although I think it’s safer to say I hope it’s something that will resolve itself and go far far away soon, because we have trouble enough on our hands. Also he’s not used to being in pain for prolonged periods of time and it makes him grumpy.
Under the mental health column, I hit a glacier of Zen this month. Lots of things could irritate me but with the exception of one Friday, it hasn’t bothered me enough to even shout at the computer. That’s new. Also it’s appreciated by Seamus who is not at all convinced by my “it’s not you” reassurances. He’s a smart dog but I don’t think he quite grasps how the box I stare at all day could be getting itself in trouble.
I don’t know if the weird calm comes from having maxed out my stress receptors after November, or maybe I have gone numb from the three month long series of working more than twice my usual hours, but it’s kind of nice. Bizarre, but nice.
:: How long can you go before you have to run the heater when winter sets in? How’s everyone doing at home?
March 23, 2016
For months after LB’s arrival, the sum total of my aerobic exercise was taking Seamus for daily walks with LB strapped into the stroller or the carrier.
I didn’t have the energy for more than that and, particularly when breastfeeding, there was no motivation for yet another thing in the list of things to do.
PiC and I have access to at least one basic gym as part of non-optional fees we pay, but taking a solo trip to the gym when you have two critters at home begging for your time and attention? They’re really good at the oogly eyes, thing. Well, Seamus is. There was that once I strapped LB to my chest for a jaunt on the treadmill. It was fun in that rickety roller coaster kind of way. Turns out wearing a 20 lb weight with grabby hands leads to unexpected (totally predictable) events like the Grand Yoinking of the emergency STOP pin, or *beep beep beep* Run faster!, or the equally stumble-inducing *beep beep beep* Slow it waaaay down!
But taking a ramble outdoors, that’s easy, right? It’s free, and more importantly, free of major dangerous opportunities for the kid to kill you. Bonus: the dog can come along.
That’s the ticket! Buuuut as a sleep-deprived and chronically fatigued mom, what really happens is we mosey outside and down the road, then shuffle our shanks back into the warm once Seamus has stretched his legs and done his business. Rather than trotting a brisk mile or two, a lot of the time we (ahem, I) ended up making a beeline to the nearest appropriate spot and then turning back like Eeyore. Seamus didn’t complain but he didn’t need to. My guilt prodded me sharply – you know he’d love to do more! and of course, anything for my dog, so in the later months of last year, I made it a point to stop working before I hit the mental wall and take him for longer and better walks. It’s gone well enough that I’ve made it a part of my personal goals this year to carry on and do a bit more training.
That was well and good but both PiC and I were still feeling the flobs.
Once LB was holding hir head up easily, we created the Little Workout Routine. Give it a try with yours, so long as you’re careful and don’t hold me responsible for hurting yourself! Need a baby? Borrow a baby! (I have one right here. Seriously, borrow hir. Please.)
Disclaimer: Know yourself, know your baby. My child thinks all of these are hilarious but yours may not. If your child does think it’s hilarious, be forewarned, you might pull something because the laughing is contagious. My child is also more wriggly than a kitten, so if that’s your baby, this could result in injury. Be careful!
ARMS!
Little-lifts: Brace our feet about two feet apart, lift LB under the armpits and reach for the ceiling. Bonus points if you can do this smoothly and toss hir up in the air without straining something. Repeat until your arms like cooked spaghetti noodles and the baby can’t catch hir breath from giggling.
ARMS + CORE!
Little-bell: Pick LB up under the armpits and holding hir straight out in front of you, do a deep knee lunge forward. Keep hir steady, even if ze is giggling and kicking hir legs, with a tight core. For the ambitious, add in a baby-curl: smoothly lower the baby toward the ground as if ze was a hand weight, curl hir back up again. Repeat until the dog looks at you disapprovingly for “dropping” his human sibling. (This will take longer and longer until he no longer cares so probably stop after a few sets.)
LEGS + CORE!
Little-legs: when ze is big enough to hold on (kinda), sit down on a chair or stool where your knees are bent at a 90 degree angle but your feet remain flat on the ground. Put the baby on your lower legs, probably hold onto their arms just in case if their grip is as bad as LB’s, then lift your legs up, straightening them out. This is a massive upper leg and core workout. I go to jelly in about ten lifts.
LEGS + ARMS + CORE!
Little-lunges: Pick LB up under the armpits and holding hir straight out in front of you, do a deep knee lunge forward. Keep hir steady, even if ze is giggling and kicking hir legs, with a tight core. For the more ambitious, add in a turn and baby-dip: turn your torso to the right or left, still maintaining the lunge position with the baby still extended, dip the baby down to about waist level and then bring hir up again smoothly. Repeat on alternating sides, until you’ve gone across the room or collapse. Tuck baby close to your baby as you collapse into a ball, protecting the hapless but usually cackling infant.
Enjoy? Those of you with older ones, is the toddler and child exercise routine half as fun or do we go back to doing normal adulty exercise?
October 21, 2015
For subscribers, a version of this went up when I thought I was ready, but the writing itself wasn’t ready yet. Apologies for the confusion!
Once upon a time, I could only work lying abed. Propped up on a nest of pillows so that typing would require the least amount of effort, staying upright drained me so completely, I’d just rinse and repeat the next day. After several months, I graduated to working from the sofa sometimes. Last year, I made it to my desk.
It doesn’t mean that I’ve been without pain. Whoa, no. It’s just there are many levels of terrible and when you’ve gotten used to your particular circle of hell, lo, there is another lower one. I’ve been lucky enough to stay just out of that bottommost canto until our beloved Angry Inchworm came on the scene.
Pregnancy didn’t significantly increase my usual familiar pain but incubating a tiny human-to-be was hard on the system. I did not like the weird and uncomfortable but it was after delivery that I found myself in trouble for a second time.
It wasn’t postpartum depression. I very much wanted to take care of our newborn, dredged up every iota of energy I could to do so, and was grateful for each day that I could do what was needed. But I also wanted to feel the affection I knew I had. I wasn’t crying or irritable, nor was I having mood swings. My can-do and love for hir was just buried by the fatigue, pain, and unadulterated fear that it might not get better. Most symptoms, in my experience, don’t.
I started an antidepressant this spring. It was prescribed specifically for pain control but the on-label use is for depression. This is, I learned, not unusual. Chronic pain travels the same brain pathways that depression does so chronic pain sufferers are more prone to depression. But you know what? Even if we were biologically inclined to have it (thanks, bodies, no, really), you know what’s depressing?
Being in pain 24 hours, every day, for the rest of your life.
Know what’s not depressing? Less pain.
The trouble was that this wasn’t my first go-around with this medication. The first time was three years ago, and I’ve never spoken of it.
In my family, depression is either not spoken of, or it’s casually referred to like the common cold. A thing that comes and goes and there’s nothing you can do about it. I knew my cousin had a bout with it only because it was offhandedly mentioned that she’d lost an entire summer, curled up on the couch, when she was normally very productive. It’s not taken seriously lest it become a serious thing. And if it does become serious in their accepted range of “serious ailments”, it still isn’t directly addressed. There’s a reasoning that makes no sense at all and guarantees you won’t get help.
It’s true for many people that depression sits on their shoulder, a cruel imp whispering nastiness, sowing doubt and self loathing. Many people start to believe the things depression says, that they’re not good enough, awful and deeply negative things. And for many people, after years of this, cannot fight any longer.
That wasn’t my experience.
My fight had been of another variety, purely for survival, and it lasted years. There was no time to think or feel, just do. In some ways, that saved me from emotional turmoil, but only for a while. I was primed, starting this antidepressant, I just didn’t know it. I was taking it, then, as now, for purely physical pain. That, it did help. It helped me function, in a detached, vacant way. I didn’t precisely have energy but I was no longer feeling completely hollow. I could go to work, get home and do some housework, rise from bed in the morning and fall back into it night after night. Not much of an existence but at least my body was in motion and it would probably stay that way.
The trigger was some trivial non argument with PiC. We disagreed about some nominal thing, something so inconsequential that even though it triggered the worst experience of my life, I don’t remember what it was. My brain, ripe for the shift, turned over.
I didn’t just start wondering or believing that I wasn’t good enough or that I wasn’t deserving. I knew.
I knew that I was a failure. If not, Mom would be alive and well.
I knew that I wasn’t strong enough. If I were, I’d not need help to function on a daily basis. Anyone could live my life and make more of it than I had.
I knew that I couldn’t fix the mess that I’d made of my life because if I could, I would have.
I was absolutely certain there was no point in trying anymore. I was a failure, I didn’t know how to fix everything, and therefore, though perhaps Doggle would miss me eventually, there wasn’t any reason for me to stick around.
Probably the most terrifying part of all was how quickly I went from having a Really Bad Night to feeling like I was ready for it all to be over. I didn’t tell anyone. I wasn’t looking for help, I wasn’t afraid of the consequences. I wasn’t in the least bit interested in alternative solutions. I was tired, and I wanted to be done.
Wanting to quit, permanently, should have been a huge blinking sign that something was fundamentally wrong. Of all the things that should have triggered a fear or any response at all, that should have been it. But it didn’t feel wrong. It felt like that “Depression Lies” or that “it’s always better to choose life”, the lack of choice, was wrong. I even knew that it was possible that this state of mind was directly linked to the medication, the label states a side effect could be suicidal thoughts, a dear friend told me that it can take time to find the right medication that won’t be worse than the pain, but it simply didn’t matter.
Unlike many more common descriptions of depression that I’ve read, my reaction was to become even more “rational”: in a simple calculation of worth, I was worth more dead than alive. Therefore, it made sense to stop being alive. I became even more productive than usual, sorting my affairs so that I wouldn’t leave a huge mess behind for anyone else. Coldly functional. Robotic. Unresponsive to any emotion, and unemotional myself. Except at night. Every night, after a long day of preparations and planning, I’d huddle in the bathroom corner, hot tears running down my face as I apologized to the air. To Mom, mostly. For failing her. For failing us. For failing at life. Asking for her forgiveness for things I should have done better and failed to.
Hindsight is powerful, though somewhat useless. And sometimes it’s just downright damaging. This was one of those times.
For two long months, I was a mess internally, and there was nothing anybody could have done, because I wasn’t telling anyone or asking for help.
Then one day, weeks after I stopped taking the medication and went back to being about a thousand pounds per square inch, the fog seemed to lift. The hatred, the self loathing, the despair, it was still there but it was a little lighter. Just an ounce less. Just a little bit easier to bear. Just a little bit more possible to live with.
The next day, again, it was a little bit lighter. And the next day, still a little lighter.
There was no great revelation, I wasn’t glad I didn’t follow through. I just felt like the deafening bellows of my psyche quieted down, but that it was still echoing in the back of my consciousness, and there were days I was just standing on the edge of the cliff. Months after the depression passed, there was still a weight on my chest. I couldn’t even talk about it, lest that push me over the edge. It hadn’t passed, so much as retreated to loom over my shoulder.
20 months later, I still felt that pressure and could only discuss it vaguely to a very good friend who had had experience with it. Until one day, a dear friend was helping her roommate get past a suicide attempt and said, “I don’t know how to help, because I don’t understand it.” That was the first time the words “I was suicidally depressed” came out of my mouth, and the first time PiC heard them. Hiding my pain from my family had become such an ingrained habit that it never occurred to me that he should help me through it.
***
I don’t have any grand revelations. May never, really. It’s a mystery how an entire world and sense of self can be upended, shaken and strained, then laid back down again. There’s no guarantee that next time, if there is one, when there is one?, that it will be ok.
For the first time in a very long time, though, I realize that even though I still can’t explain the experience, now that we have LB and have found peace with each other, I find myself knowing that no matter how hard it gets, as long as we have hir and each other, I want to live. I never want to deliberately cause hir the pain of having to bury hir mother as I did mine. Or of never knowing me, or never having my love, or protection. But it’s not just the negative. I also want to be here. I want to see the day to day, to be there on the special days, to watch hir grow, proudly and with wonder, hand in hand with PiC. To share that love and those memories with cherished friends, and cherished family, and to build a good life.
Life was crushing, for a long time, but we came through it. We probably can again.
And for now, that’s enough.
August 25, 2015
Status: Flattened, with feet up. It’s the only way I can write, with the few still-functional fingers, when my hands, arms, shoulders, and back are racetracks for searing, electro-shock variety pain. After etching grooves deep in my bones, the pain creates a fatigue swamp, literally knocking me out for a few hours. By Day 5, staying conscious is an accomplishment. I spent Days 1 and 2 waking up from that haze wondering what the heck time it is and when I passed out.
Looks like I overdid it. Or maybe it was all due to fall apart right about now. I’m not sure. Navigating that balance between doing what you “can” but not taking on too much is like blindfolding yourself, spinning in circles, then trying to unlock the master lock of a door with ten identical knobs. With a toothpick. It’s a crapshoot. There are no reliable signals to follow.
Add to that, moderation was always a special sort of hell for me.
I want to do more. I know I shouldn’t actually do it but I always want to do more and usually telling me “you can’t” is like pitching a lit match into a hay bale and saying don’t burn. Before my pain became chronic, pushing myself was a treat.
When I walk a quarter of a mile, I want that next quarter. If I run a half, I want another half. That was how I worked up to my first mile under 8 minutes, was how I competed in my chosen sports, was how I fought my way up, professionally. I still remember learning about building stamina from my first great P.E. teacher. Youth was on my side back then too, but the regimen was sound. Performing exercise to failure (also known as: until you can no longer maintain perfect form) was the first of many steps to building strength and endurance.
“No pain, no gain” was my actual motto. Fool.
My body doesn’t respond to that tearing down of muscles the same way anymore. It doesn’t work normally anymore. It stopped being normal half a lifetime ago.
I was never a quick study, though heaven help me, I’m some kind of stubborn. At first, the trade-off for pushing through, even if only by 15 or 20 minutes, was “only” days of crippling pain. Later on, crushing fatigue joined the party. An afternoon running errands cost two days of bed rest. A couple hours of exercise cost a week of mobility. Three weeks, once, when I was particularly boneheaded. If -no, when- I challenge myself, push myself just another eighth of a mile, just another five minutes, “just another” crashes down around my ears. It becomes a choice to sacrifice all other life activities like feeding myself or bathing. It should have been obvious, but it still took more than a decade before I accepted it.
Having accepted that fact, now, it’s a whole other struggle.
It’s battling my own instincts to get up and get out because to do otherwise is lazy except that to do so is to hamstring myself because I’m down to my last Energon Cube. It’s trying to parse the muddled and confusing signals correctly so that I don’t cross the line, but “stay active!” How do you tell when enough is enough if sometimes you’re feeling as close to fine as I get, don’t feel like you’re overexerting, but only crash the moment you stop moving? What do I go on, if I can’t trust how I feel?
To make things even more confusing, once every several months or so, for a couple hours it’s like the sun is shining on me. I have energy and only medium pain, the fatigue has backed off and I’m like unto a Tiny God of Getting Shit Done. For those brief magical hours, anything seems possible. That’s not today’s problem though.
As usual, I’m not the only one who’s had a rough few days. Abby has, as have a few other friends. I call a do-over on a crappy wasted weekend!
March 13, 2015
There’s a scene in West Wing when President Bartlet comes to the Oval Office, hopped up on narcotics that always cracks me up. I’m only like that on painkillers the first 1 time I take them, they just don’t seem to take after that, but I’ve definitely been at work on one of those woozy days.
All sorts of fun, lemme tell ya.
But that was me for a lot of years – I insisted that I knew myself, that I can do more. Sometimes I can. Evidenced by the times I powered through some pretty rough times. But for some reason, this led me to the conclusion that I’m just being lazy when I don’t want to do something, I didn’t trust that despite my track record, I would get back up again if I just let myself sit and be still.
Rest? What the heck is that?
I was certain as anything that because I wanted to sleep for a week or lay down forever, I couldn’t rest. If I let myself have a break, I’d never stop being on break.
Talk about underestimating and being totally out of touch with myself.
“Here’s what I think we ought to do… [long pause] Was I just saying
something?”
That distrust got even worse with pregnancy. What do you mean I need to rest? What do you mean I shouldn’t be lifting all those heavy things? What do you … oooooff. Oh. Oh that’s what you mean.
I’d thought that I’d accepted my limitations years ago, but really, I hadn’t. Or at least, I wasn’t at peace with it so routinely pushed myself too much, and crashed and burned.
It took being pregnant to finally respect my limitations at any level – there were days I simply absolutely could not do more than the bare minimum. It took the whole length of pregnancy for me to understand why things seemed to be different.
I was still living with the so-called invisible diseases: chronic pain and fatigue.
Meanwhile the pregnancy was a tangible and visible thing that also brought with it pain and fatigue. The key difference here was that visibility and subsequent familiarity.
People weren’t confused by pregnancy. This is a known quantity for the most part and the right questions were obvious.
The considerate ones paid attention to how long I could be on my feet, were conscious of the fact that I shouldn’t be lifting things, etc. These are same considerations that I’d need for my pain and fatigue but could never ask for because it’s simply not clear why I’d need them. Rather than explain and face skepticism and loads of unwanted medical advice from the uninformed nonmedical professional, I always just stiff upper-lipped it and figured out my own accommodations as best I could. Accepting help when pregnant was foreign and uncomfortable but I had to and the experience was so different from asking for help solely because of the usual culprits.
Having figured this out, I don’t exactly know what to do with the information. Maybe I will one of these days but, for now, I’ll settle for not being so hard on myself. Life has already got that angle covered, thanks.
February 28, 2015
I started this piece with Katie months ago for @PhDisabled but it’s Rare Disease Day so it is fitting that I pull it together now.
~ ~ ~
It’s unlikely that you’ll have said these things since my usual readers are unfailingly thoughtful and kind but you might have heard some of them, and perhaps in the context in which they’re delivered to us.
Most days, I have a sense of humor. Wicked, yes. Pointed, oh yes. I do find the funny and the irony and the chuckle in most things so it’s often easy to shrug off another microaggression equivalent of failed expressions of concern. Most days. Then there are the days when @PhDisabled starts a conversation and reminds me of those thickly bitter moments that Katie (dealing with her own serious medical issues) and I scowl over.
What not to say to people with chronic illness:
Some of us occasionally express frustrations with living, isolated, with unremitting pain. Surprised? These people were.
You should try massage.
Revanche: That’s novel. That’s never come up in the last 20 years. Oh. It has.
You should try acupuncture.
Revanche: That’s novel. That’s never come up in the last 20 years. Oh. It has.
You should try this! It’s this healing water that your uncle’s mom’s cousin’s horse’s trainer’s sister drank once and it cured her cancer.
Revanche: Because any liquid can cure cancer. Also, I don’t have cancer. Just FYI.
Take home this plant, chew one leaf a day, it’ll make it better! It can’t hurt.
Revanche: It CAN HURT. You don’t even know what this plant IS.
You should rest more.
Revanche: More than 20 hours a day? How much more?
You should try vitamin B12.
Katie: Where did you get your medical degree again?
Revanche: Vitamins aren’t medication!
I could get hit by a car and die any day.
Katie: That really is the same thing as having a 66% chance of brain bleeding and being permanently disabled! Thanks for the perspective!
Revanche: Would you, please? But seriously, what possesses you to say such a thing?
You need to push through the pain.
Katie: Said only by people who have never experienced migraines.
You’re so lucky! I wish I could lay in bed all day!
Katie: You left out “in excruciating pain.”
Revanche: “Could” is not the same as “have to”. For the love of …
Must be nice to only fill your car with gas once every couple of months.
Katie: Oh, yeah. Being stuck inside, unable to leave my house because of pain is a regular hootenanny!
Revanche: That’s how you look on the bright side? Unrelenting pain, one hand. Saving on gas money, other hand!
You have to be positive. If you believe this medicine will work, it will.
Katie: So that’s my problem!
Revanche: starts cursing in Dwarfish
But you look fine!
Katie: I’m sorry chronic migraines and brain masses don’t manifest like a broken leg in a cast. I promise I feel 400 times worse than I look.
Revanche: This isn’t the medical version of Dorian Gray’s portrait, we’re not hiding the imagery in the closet.
Said sarcastically: Why wouldn’t people want to be around you? You’re just a ball of sunshine!
Katie: I have enough anxiety about being the cheerful chronically ill person without you adding to it, thanks.
Your depression and suicidalism are just like the time I had a really bad cough, and I kinda sorta wished a car would run me over just so the coughing would stop.
Katie: Glad I’m not alone. Also, nope.
Revanche: Your face is like a really bad cough.
It could be worse! / You think this is bad? Just wait until….
Katie: As if chronically ill people don’t spend enough time doubting themselves, feeling like they’re exaggerating their pain, feeling selfish for even talking about their pain. Again, thanks for the perspective.
Revanche: STOP IT. As if it being worse isn’t among our worst nightmares, why the hell would you try to make us catastrophize? That’s NOT helpful. I also hate hearing this about anything not medical related for the same reasons.
If you’d go outside in the sun more often, you wouldn’t be so depressed. It must be God’s will./God doesn’t give you more than you can handle./Appreciate the roses and the thorns.
Katie: Shhhhh, stop talking now.
Stop thinking about it so much.
Katie: Okay, don’t breathe air.
Revanche: Don’t blink. Just stop blinking. Right now.
I think you underestimate yourself.
Katie: Trust me. I know my physical limitations better than you do.
Revanche: *growl*
Why don’t you … [insert their idea of treatment here]?
Revanche: I’m actually not obligated to justify my healthcare to you. Thanks.
What to say instead:
After a long spate of patronizing comments, I prefer people just keep their mouths shut, forever, but then again, there are some people who get it right.
Absolutely nothing.
Katie: Most times the only thing I need is an ear, an open mind, and a hug. Letting me talk about my fears and my experiences means so much more than anything you could say.
I don’t know what to say, but I think of you often and I love you.
Katie: Again, just knowing that you’re there for support is enough. I already know you don’t have answers. I’m not talking to you because I want you to solve my problems or cure my illness.
It’s okay if you need to cry.
Katie: Probably the hardest part of my life since my diagnosis has been the feeling that I need to always be The Inspirational Chronically Ill Person. Knowing that I can let my guard down around you, speak honestly about what I’m feeling, and cry if I need to… Well, that’s everything.
Revanche: And I may not believe you but it does help to hear it.
I’m going to the store tomorrow. What can I bring you?/I’m bringing dinner over on Wednesday. Would you prefer chicken or fish?
Katie: All too often I hear “Call me if you need anything.” Whether it’s due to pride or the cynical thought that no one actually means what they say, I never call. If you know a loved one is homebound and unable to cook or perform basic tasks, offer to help them by making a plan to cook for them or run their errands.
Revanche: “Call me if ..” has proven over and over to be a verbal crutch. The people who mean it ask for concrete details like “Do you have enough food for the week?” or “Would it help if I [did this or that thing]?” If I think you’re sincere, then I will tell the truth. If it just seems like a conversational throwaway as it often is, I’ll just struggle on with my day because I’d rather skip the disappointment when the follow-through falls flat.
I’d love to spend time with you, would you be up for it [this day/time] ? (And BE ON TIME. And don’t make a mess for me to clean up!)
I’d like to see you this weekend, are you up for a visitor? I’ll bring lunch.
Revanche: Assume that I would also like to spend time with you but that it’s possible I won’t be able to even sit up. One of the most frustrating things is the thoughtlessness of those who spout how much they miss me but can’t be bothered to think through the impact of their social visit where they show up late, strew things about as they sift through the house as if bored, and leave things in utter disarray.
Would you like to take the stairs or the elevator? (And respect my answer.)
Revanche: Being aware of the difference between taking a flight of stairs vs the elevator and offering the choice tells me that you understand there are things, normal things that normal people do, that I can’t always do. Without making a big deal out of it, offering the choice is an enormous relief when I can’t bring myself to remind people for the jillionth time that I can’t do everything they can.
And don’t get me started on the patronizing fatheads who think it’s their life mission to help everyone they deem disabled whether or not that help is needed or welcome.
How are you feeling today?
Revanche: There’s a subtle, but significant, difference between “how are you?” and the more specific phrasing.
To err is human …
We know that people simply don’t know how to relate to those of us who live in constant, unremitting pain and we can forgive the occasional gaffe. It’s just useful perspective to know that for every one foot in mouth moment you observe, it’s about the 300th time we’ve heard that comment. Maybe just that week. We’re already exhausted, any bit of consideration and thoughtfulness is appreciated.
Related reading:
Illness Etiquette
A Storify: Discussing ‘On Pain & Celebration’
January 7, 2015
Reading Parenting with chronic pain on Slate was a huge wrenching reality check for me.
There’s nothing new in there. No surprises about how chronic pain plus the rigors of parenting go down. Nothing that I haven’t worried over and discussed to death with PiC. There were many many days where I just couldn’t see committing to parenthood because of it. But reading another chronic pain mother’s experience, after the child has arrived and is older, is a bit of a kick in the gut nonetheless.
Chronic pain has now dominated 2/3 of my life. There is no cure and very few effective ameliorating treatments for what I have other than trying not to “overdo it” (which is to say, do ANYthing that resembles having a real life) on bad days.
I have no reason to think that it’ll get any better. Parenting was always going to be a challenge but parenting with only 65% of normal function, at best, well, that’s going to be a hell of a thing.
I wonder if this is a huge mistake for LB’s sake. My parents, in some very real ways, shattered my late teens and most of my 20s with their financial and health instability and poor decisions. Am I setting LB up for an equally difficult path?
Obviously you could argue that no one knows what tomorrow brings and that terrible things could happen to any healthy parent as well but
A) most people don’t really actually get hit by a bus so that “anything could happen” argument holds very little water here practically speaking (and anything could STILL happen but magically getting better is not likely) and
B) I already have an existing chronic and limiting condition that has only gotten progressively worse over the years. This isn’t a game of What If, it’s a When and How Badly will this deteriorate?
We’ve committed.
We are committed. There’s no turning back and I don’t think we would choose to if we could turn back time. (I don’t know. I just don’t think we would. And maybe that’s just because I’m stupid. But it’s highly likely that LB will be an only child if we don’t adopt.)
But this just reminds me that I’m not paranoid, that the sort of lurking fear that I’ll be crippled “someday” is not being dramatic given the number of days I can only just exist.
This is why I’ve always insisted that our emergency savings are UNTOUCHABLE. And our savings rate must NEVER fall below 25%. When I get too sick or broken to work, I need to know we won’t be falling back on the charity of … who exactly? No one in my family is fit as support even were they inclined to provide it, the few who might be in a financial position to help are terrible people and I’d never ever ask them for help. His family’s got their hands full already.
Simply put, we must maintain solid financial health because my physical health is at best, average, on a good day.