That’s what I texted Kyle and my mom and my best friends after I got out of the rheumatologist. Just one word because it was the diagnosis I received, and it didn’t need a whole lot more explanation in that moment. I was in pain; I have been in pain for years. And there was the answer to my wondering why: fibromyalgia.
The frustrating thing about getting a diagnosis of fibromyalgia is that most of the medical community looks at it with a loud shrug when it comes to what it is, what causes it, how to fix it. On the one hand, certain therapies help: gentle movement, gentle activity, tai chi, yoga, and certain medications that I was on already like gabapentin and venlafaxine all tend to lessen symptoms or, at the very least, trick your brain into saying “well this isn’t so bad.”
(the irony of the movement is that if you do too much of that, you end up exhausting yourself, so it has to be balanced: walk, do yoga, swim, but be gentle with yourself, or you’re going to reach the end of your routine and be a noodle)
But on the other hand, it’s a disorder that’s not understood very well, and unlike a lot of autoimmune disorders, it’s not one where your usual regimen of NSAIDs or even opioids will do much good, because the problem isn’t inflammation so much as it’s your brain getting confused about the signals it’s receiving from every nerve in your body. It’s sort of like this:
What research there is shows that fibromyalgia tends to develop after a physical or mental trauma, which tracks because I’ve had this pain since shortly after my Awful Back Incident in 2020. It exhausts you on so many levels because you’re constantly fighting pain that doesn’t even make sense; it’s not like inflammatory pain or pain from an injury. It’s just pain, every nerve in your body responding to every conceivable stimulus it receives by sending pain signals.
And nerves are one of those fun areas of the body that most doctors just shrug loudly about and say “idk, it’s magic I guess?” (obviously not literally, but you know what I mean) It’s roughly a step up from “you have ghosts in your blood and you should do cocaine about it” like we had in ye olden days of medicine, but not a huge step. And there are experimental and off-label treatments all over the place–LDN is one that I’ve heard a lot of good about and plenty of people happily extol the virtues of marijuana, particularly higher CBD strains–but it’s not a super sexy and easily understood disorder so it’s not something that people are champing at the bit to fix, at least not right now, at least not in huge numbers.
I’ve had a couple of good cries about it. Maybe that’s emotionally fucky of me, but I don’t really care. I know it’s not the end of the world, and I know that functionally, very little about my life has changed–I’m not even on any higher doses of medication or anything–but I think knowing that not only is my diagnosis one that’s lifelong (because as of right now, there is no cure for fibromyalgia) but also it’s one that doesn’t have any therapies that work quickly. And that shouldn’t be frustrating, but it is. Before I went to the rheumatologist, I was doing my own research (I can see you, doctors, tsk tsking me over there) and playing “what if it’s this” with a bunch of autoimmune disorders. So many people talked about going to the rheumatologist, having said doctor take one look at them and say “you have [x]” and prescribe them some shot or drug that made them feel better within 24 hours. Obviously not a cure, but a reduction in symptoms.
But fibromyalgia isn’t like that. My rheumatologist told me the main things she’d suggest prescribing were medications I was already taking. That exercise and movement would help me but both would take time to really work their way into my brain. That fibromyalgia is very real–that the symptoms aren’t psychosomatic or anything–but that it’s heavily misunderstood.
I don’t know. I feel like that’s something fair to cry about. Sorry, you’ve got an incurable disorder and the best we can suggest is that if you exercise you will eventually start to feel better, and maybe some drugs on the market could be useful but we’re your physicians and we’re very skittish about prescribing things for off label usage, so have fun.
It’s required adjustments in thought, for better or for worse. I’ve already been looking at my life differently because, hey, autism; but then you add this disorder to the list and it’s a whole new level of different ability, as the Autism Mommy T-shirts say. Right now, that looks like taking things a lot more slowly than I have been. I’d been looking at life kind of in a mindset of “I’m just going to get back into things, I’m going to push myself a little bit more each day” and yeah, that’s technically what you should do with fibromyalgia, but if you’re also dealing with mental stress while pushing yourself physically, it produces interesting results.
Specifically, this past weekend. Halloween, what have you. I feel like once upon a time, my Halloween adventures with the kids wouldn’t have caused problems for me: I stopped by a few stores Saturday morning and then took the kids to the town trunk or treat in the evening, which was a lot of standing in line, waiting, etc. Then on Sunday, we took the kids to Barnes & Noble and Target. Again, normal things, but both days just wore me out completely. Maybe it’s the stress of this month (we’re going on vacation in a little while, so I’m still piecing that together), but my brain and body are like… not fans of doing stuff.
I talked it over with Kyle, and we decided that it’s a good idea for me to have a disability placard for our cars. It’s a weird thing because fibromyalgia is a decidedly invisible disability, but I’m discovering more and more that any level of overdoing it, including walking too far between the car and the store or between the car and the hotel and so on and so forth. And on one hand, I feel like I need to justify it over and over again, but on the other hand, like… no? ??? It’s justifiable from my doctor’s standpoint and from the standpoint of the state, so there’s really not anything else I need to do.
Besides take it easy.
And get to a dispensary sometime.
And figure out an exercise routine.
But all of that when vacation is over. For now, I’m more focused on getting cars inspected, oil changed, tires checked; getting road snacks and creating packing lists; pulling together a driving playlist and figuring out where we’re going to have Thanksgiving dinner.
And doing it all while being like, ah, I can’t do as much as I used to.
When I was in high school and college, I paid a lot of attention to how I looked. I loved dressing up in certain ways, wearing real outfits that weren’t just jeans and a t-shirt. In college, I fought off depression by spending absurd amounts of money on makeup (admittedly, not expensive makeup, but if you’re buying a bunch at CVS every week, it adds up), and while I never put much effort into my hair outside of the salon chair (blonde for one year, red for the rest, never quite achieving the chunky highlights I wanted and thankfully avoiding a Kelly Clarkson look), I still took care to make sure I looked decent, at least when I wasn’t heading for an 8 a.m. class.
I lost that at some point.
I don’t know when I lost it. Maybe the summer between junior and senior years, when depression hit me like a lahar, knocking me down and burying me up to my eyebrows in mud so thick I couldn’t get out of bed most days. Maybe after I graduated, when I was so panicked about finding some sort of work that the idea of really pulling together a Look seemed insurmountable. Either way, by the time I’d left school and entered the “real world,” the effort required to pull together a cute outfit and do my makeup seemed pointless. I wasn’t quite schlubby–that came later–but I didn’t care.
It wasn’t really from lack of desire to care; it was more from–I don’t really know. Something sapped my ability to do so. Maybe it was the corporate grind of those early years, the drag from temp job to temp job or retail work to retail work (because an English composition degree doesn’t lend itself to very many career paths) and the slow spiral of untreated depression. I wanted to curate a closet of cute looks, but lack of money and that fucking drag prevented that from really being the case.
And now I’m on the other side, a nearly forty year old parent whose fashion sense can best be described as “pajamas that are (probably) clean.”
I don’t much like that. Don’t get me wrong, I am a proponent of comfort over style, function over form, but I look at myself in the mirror and don’t like who I see looking back at me because it’s not just that she doesn’t care about her outfits or makeup (lol what makeup). It’s that she doesn’t care about herself.
I honestly don’t know when that happened, but I feel like it was a slow decline. Bit by spoony bit, saying, “well, that doesn’t matter,” until the person looking back at me was unrecognizable by most of my standards, and I’m left doing some weird sort of mental calculus every time I want to go out, the math of “how schlubby can I get away with looking.”
And it’s part chronic pain making it hard for me to dredge up the energy necessary to really put work into my appearance, and it’s part being tired all the time, and it’s part “wow, three kids is a high number, and oh, they all have IEPs and you’re constantly emailing back and forth about whatever they’re doing at school? Wow, that’s an even higher number than three somehow.”
BUT NONE OF THAT IS THE POINT OF THIS ENTRY and also it’s really depressing to think about, so we’re moving away from it.
The point is that I now have the time, some of the energy, and the resources to actually try and make myself less schlubby. I’ve got my Caboodle full of makeup that I can use when I really want to (and/or when I find time to dig up a makeup tutorial somewhere that’s easy to follow and caters to my hooded but not super hooded eyelids), I’ve got large swathes of the day free to play with makeup and fashion, and I’ve got the desire to look less like a sentient pile of (mostly clean) laundry. My only struggle at the moment is figuring out what I want this new fashionable me to look like.
See, when I was younger, while I was really good at having outfits and wearing makeup, I didn’t really have a Look, per se. It was more just “ooh, this is cute!” regardless of whether it pushed towards surfer chic or vaguely skater-esque or grunge or preppy or goth. My closet had personality, or more accurately, personalities, and I could never settle on just one look. Now as a woman pushing forty, I want to really narrow that down and decide what I want to look like.
My first instinct is to go wholly goth. I love the goth aesthetic, less from a super edgy look at me perspective and more from a “why yes, I would like to be a vampirewitch all the time, thank you” perspective.
And I’ve been leaning that way with most of the clothes I’ve bought in the last year. I’ve started to move towards a collection of t-shirts and dresses that are all black, all the time, or at least mostly black or gray. It’s kind of lazy goth, really, because the hardcore goths REALLY go for it in a way that’s a bit more than I’m comfortable doing (largely because it seems like quite a lot of work for a trip to Target). Doing this has made shopping both more difficult and easier–I can narrow down my choices more quickly, but I also really have to dig for certain things (shopping for a dress to wear to my cousin’s wedding at the beginning of the summer was an adventure, and I’m still not wholly pleased with what I got).
The trouble, though, ends up being that I can’t commit to goth shoes any longer. This fact saddens me greatly, as goth shoes are just. Perfection. Everything about them is perfect. I’ve lived for finding good goth shoes most of my life to this point, starting with a pair of knee high platform boots my mom got me for Christmas when I was 17 (boots that, along with my favorite red dress, frequently got me into trouble during my college years) and continuing right on through to the knee high combat boots and black motorcycle boots I have nestled in my closet right now. I love them.
But I cannot walk in them any longer.
Between the wtf of my chronic pain in my fingers and toes and small bones of my feet and the “oh that makes sense” pain of my sciatica, I’m basically relegated to Very Supportive Sneakers. And that’s fine, and I love my Very Supportive Sneakers, but it is a bit jarring to pair a wonderfully curated goth ensemble with a pair of gray and pink New Balances. It’s like a fashion mullet: spooky on top, Dad mowing the lawn on Saturday on bottom.
So it’s a work in process. But I’m figuring it out, and I’ll keep y’all updated as I do.
Somewhere, some judgmental person is like “how can you be so happy about your babies being out of the house all day???” but listen. I have spent the last eight years with someone either on me or in my uterus nonstop. Today, I got to go on a lunch date with my husband without finding someone to babysit for us. When I had to send emails this afternoon (because being a mom of three school-aged children means doing a lot of emailing), I didn’t have to worry that someone was going to get bored with whatever I’d thrown at them to distract them. I could just email and reply, email and reply. I was so fast.
So now I’m figuring out what to do with these hours between 8:00 a.m. and 3:00 p.m. when I used to have to spend 110% of my time making sure Isaac wasn’t bungee jumping from the top of the stairs (that still is a focus between 4:30 p.m. and 7:30 p.m., for the record), and a lot of it boils down to actually taking care of myself.
Anyone who’s raised twins can tell you that it’s a LOT of work. You essentially have to be in two places at once at all times, even more as they get older and more capable of causing problems on purpose (as they gleefully inform me they’re doing several times a day). Your own needs don’t just take a backseat; they get strapped to the rear bumper with some duct tape and you pray they won’t fall off when you hit a particularly gnarly pothole. And when it’s twins, it’s not a societal thing telling you that mom should give up taking care of herself while dad does whatever. If you’ve got a decent marriage, both parents are struggling and dragging themselves across the finish line at the end of every day, wondering how they survived.
And then add autism into the mix, with its superpowers and drawbacks, and basically, I’m amazed that I made it to the twins’ first full day of school without actually being committed to a mental institution.
(note that I did come close, but it was technically a partial hospitalization and it was under extenuating circumstances, i.e., a literal plague, so I still consider it a victory)
This week, self care mostly just looks like having very relaxing days. I was in sleep therapy for a while this spring and summer, and I’m pretty sure my sleep therapist would shit a blue kitten to see how I’m spending this first week with no kids at home. But that would be her problem because I’m sleeping not because I feel like I need to but because I can and I want to. I like sleeping, and I like sleeping even more when I know that I don’t have to worry about my kids while I’m sleeping.
After this week, though, it’s time to really buckle down on the actual self care. Not the forever naps or the eating bonbons or wearing sheet masks type of self care, but actually pulling my body back from whatever hellhole it’s been in for the past two years.
I’d written back in March, when I had time to write here semi-regularly, that I was working on getting a CPAP, and I have gotten one. And I’ve noticed a marked difference in my before and after life, though I didn’t realize the difference until one day, when I didn’t get enough sleep and suddenly, I felt cranky. That didn’t happen before because I was just in this permanent state of exhaustion that never ended, so I didn’t ever feel cranky. I just felt normal.
But then the other day, I didn’t get as much sleep as I had been and had to function on this insignificant amount of time. And I was cranky. I was so upset about everything and I was like ??? what is going on? Until I realized that oh, I was acting like I hadn’t slept because I hadn’t, and boy was that weird. I was so used to getting such bad sleep for so long (roughly 70%-80% of my nights were spent not breathing) that I didn’t know what being sleep deprived felt like anymore because it was just my normal.
So I’ve taken care of the sleep aspect, at least, but a lot of me is still tired. This is partly because I’m still recovering from however many years it’s been that I’ve had sleep apnea and been getting zero sleep. This is also partly because, increasingly, I’ve been dealing with absurd amounts of bizarre pain.
I say “bizarre” because it’s pain that I can’t really explain with anything simple. I can explain my knees and hips and ankles hurting because I am fat. That makes sense to me. I cannot explain why my toe knuckles and finger knuckles hurt pretty much all the time. As far as I know, I haven’t been running around all night like a gorilla, balancing on my fingers, or learning to dance en pointe. My fingers and toes have hurt for the last two years off and on and it’s just very, very weird.
When I spoke to my primary care doctor about it (not intending to, by the way; I went in to speak with her about a completely different matter, and Kyle said, “hey, while you’re there, why don’t you talk to her about your fingers and toes hurting?”), she basically diagnosed me with “being fat” and spent the rest of the appointment meticulously reading through the list of ingredients on the Dr. Pepper I confessed to drinking. Which… yeah, pretty par for the course when you go to the doctor as a fat person. And, mind, I’m not saying that I’m either healthy or not fat; quite the opposite, really, and I know the steps I need to take to improve my situation.
Anyway, my doctor thankfully also ordered bloodwork to check for autoimmune issues, because when you have the symptoms I have (nonsensical joint pain, skin that gets hot when it’s in the same universe as a day over 65 degrees, fatigue even when you’re getting decent sleep), it tends to indicate something autoimmune going on. One of the results came back elevated in a range that, from what I’m reading, tends to be consistent with autoimmune situations, so that’s exciting.
I do not want to have an autoimmune condition, I should add. They all sound wretched. Bare minimum, they sound like a lifetime of pain and medication to do away with the pain that has awful side effects of its own. But I’d also like to know what the fuck is up with my body already hurting. Like my body already hurts; I don’t need an autoimmune diagnosis to make that a thing.
(as to why I never brought it up before, quite simply it’s because between the pandemic and raising three kids with varied special needs, my own needs were, as I said before, strapped to the back bumper with duct tape)
I have an appointment with a rheumatologist in late October, and I really hope that she isn’t dismissive, that she says, “yeah, no, drinking soda isn’t good and you should exercise, but neither of those things should cause your knuckles to hurt like this.”
So in addition to alllllll of that, I’m looking to start exercising properly, now that I actually have free hours during the day. I don’t know when I’ll be doing that exercise, but I figure ~30 minutes a day, 4-5 days a week of moderate cardio should do the trick of getting my heart pumping and my body saying, “whoa, hey, we’re taking care of ourselves now! Neat!” We have a membership at a local community center that I plan to use for that purpose, and that’s something I’ll be doing starting next week.
And in between all of this, I’m also getting my tubes tied. With all the new bullshit laws happening across the country (side note: if you agree with any of those laws, you and I are not going to get along) and with any future children I’d want probably coming from a freezer at this point, tubal ligation just seems like a good option to me. And that is happening on October 3, and I am pretty jazzed about it. Hilariously jazzed, too, considering literally everything I went through to have the kids I do have, but honestly, having power over my own body is a good feeling and one I want to maintain as much as I can, all things considered.
(those things being everything I talked about above)
And I’ve got plans to clean out a whole bunch of stuff from our house and I’ve got plans to write again and I’ve got plans to take my camera out places and and and
Basically, I do, in fact, miss my kids somewhat during the day… but I’ve missed myself a whole lot more.
So when I got my CPAP, I hoped it would kind of be like in Sleeping Beauty where she just kind of wakes up and is beautiful and fine and life is able to go on. I knew from a lot of experiences I’d read that this usually isn’t how things work, that a lot of people who’ve had severe sleep apnea for a while (based on my history, it’s been at least since I was in high school, if not longer) need time to heal their brain and body from being so sleep deprived from so long; but I still hoped that I’d be one of those people who’d get on the CPAP and suddenly feel great and ready to fight dragons.
The first day was like that. I was too awake to go back to sleep after the kids left for school, and I wanted to stay awake, so I drank a Dr. Pepper in the morning (hey. hey. it’s probably less calories than the caramel mocha whatever you get in the line at Starbucks) and that kind of took me from awake to AWAKE. I was hyper. I have never been hyper. I felt like I wanted to be on a trampoline. I cleaned. And then at lunch, I had another Dr. Pepper and stayed somewhat zingy until I went to bed, and that was that. And I hoped against hope that I would be like that every day because wouldn’t that be nice?
But that hasn’t been the case. The first day was like that, but subsequent days have been significantly less so. On the one hand, I think this is because a cold (not Covid, we tested so many times) and allergies have been rolling through our house making everyone snore (especially Kyle, very loudly) and making us all more tired than usual. On the other hand, I do think I have a lot of healing to do because it’s been something like 25 years that I’ve been dealing with this, and that sort of damage doesn’t go away overnight.
I have noticed differences. When I am awake, I feel like my brain is more there than it used to be. I used to have trouble keeping my eyes open at all, but now I just feel “normal” tired, if that’s even a thing. Before the CPAP, it was like I couldn’t sit down anywhere without my eyes trying to close on their own. Now, that isn’t a problem. I still feel really tired, but I’m not falling asleep where I sit, so that’s an improvement. I think. I don’t know, it’s hard to say, since it’s been so long since I’ve actually NOT felt tired that I don’t know what not tired really feels like?
I’m still on pain meds that warn that they cause brain fog, and I definitely still have some of that, but it’s not as bad as it was. I don’t feel like whoever’s in charge of the simulation keeps canceling my actions whenever I walk into the room, and I’m not completely losing conversations mid-sentence, so that’s helpful. I’ve even had the mental bandwidth to start being creative again, mostly with journaling (I do something called “junk journaling,” which is when you basically use stickers and scrap paper and whatever to make your journal look like a beautiful mess); and even though I absolutely do not have the emotional bandwidth to deal with the 72 separate apocalypses happening on a daily basis (do any of us?), normal weeks are back within my capabilities, and that feels better.
I think that’s the gist of it: I don’t feel great, but I do feel better. There’s a noticeable improvement. Everyone’s noticed it in the way I talk, even when I’m really tired. They say that I sound less exhausted, which is accurate. And that’s not to say that I never get exhausted (after all, I still have three kids and a life going on), but it’s not just my constant state of being.
I’m trying to push myself a little. This week, I’ve been trying to go to bed a little bit earlier so that I can get up at the usual 7:15-7:30 wake-up time and stay awake, but it’s a weird balancing act. On the one hand, I don’t mind going to bed a little earlier as a general rule, but on the other hand, I absolutely struggle with revenge bedtime procrastination. I feel like there aren’t enough hours in the day to refill my own emotional cup, and I know that if I don’t do that, the kids will be the ones to suffer for it because I won’t be able to engage with them the way I want to.
Which is, after all, a big reason why I’m working on overall improving myself: to be able to engage better with my kiddos.
The next step is, I think, being more active. We’ve got a membership to a local gym/community center so that Sam can have swimming lessons there (Sam, by the way, HATES swimming lessons), and I want to start using their facilities either in the morning when the kids are in school or in the evening when the kids are in bed. I don’t know, though. Every time I try to start being more active, I end up failing somewhere along the way, and it frustrates me. The times I’ve managed to incorporate more activity into my daily life are times when it wasn’t a choice: when I had to walk ages to get to classes or walk to the store or things like that. Where we live now, walking is just not a thing that can happen. The roads have no sidewalks, and we live on a really steep grade, and while I could absolutely do that eventually, right now, it feels daunting.
As does actually going to the gym.
But I still want to try.
That’s really the theme of it all. I don’t know if I’ll succeed, but I still want to try. I don’t know what the eventual outcomes will be, but I can’t really find out if I don’t actually make an attempt. And the attempt is scary, mostly because of the potential for failure, but. Well.
I’m tired. And I’ve been tired for a very long time.
I don’t remember the last time I got a good night’s sleep, and I don’t say that in an overdramatic parent sort of way. We all have a hard time with sleep and rest as parents–the kids get you up in the middle of the night, you worry about them, they wake up at 5:30 a.m. for no reason. Parenting is exhausting.
But that’s not it.
I don’t mean it in the daily grind sort of way. We get up and commute to work and subsist off caffeine. Our supervisors demand too much of us, and by the end of the work week, it’s all we can do to plop down in front of the TV and binge watch something so that we can have conversations at lunchtime. The capitalism grind is exhausting.
But that’s not it.
I don’t mean it in the school sort of way, where you stay up all night working on a paper or studying for finals and then hold your eyes open with tape the next day and crash afterwards, or where you and your friends are so wired after studying for those finals that you go to Dunkin Donuts at 3 a.m. in weird clothes to try and get whatever coffee and donuts you can to push through. School is exhausting.
But that’s not it either.
Everyone I know has dealt with those exhaustions, so I figured mine was just more of the same. It was easy to write off how tired I was when I was in high school–after all, school started at 7:40 a.m., and I was in AP classes and had extracurriculars and church and friends keeping me out late. And no, it wasn’t preventing me from getting at least 6-7 hours of sleep a night, depending on what I was doing, but of course I was tired then. And then college–the exhaustion ebbed a lot then because I planned my day around it. When selecting classes, I avoided anything earlier than 9:30 a.m. and kept my afternoons free for napping as much as possible. I did stay up incredibly late, but not so much that I wasn’t getting any sleep, and I still needed those naps in the afternoons, every day. But I wrote that off because, well, it’s college. Everyone naps in college. Right?
When I started working a regular 9-5 job, the exhaustion resurfaced. My first job, I had to leave the house at 7:15 a.m., at least if I wanted to beat traffic, and I was so tired that I kept making stupid mistakes on the job: filing things incorrectly, forgetting who told me what, that sort of stuff. Eventually, I left the job to substitute teach for a bit, and I always ended up at schools far away. I’d feel so tired during the morning commute that I’d have to slap myself to keep awake, and then I’d come home and nap as long as I could. I told myself that I was staying up too late or that I just had fucked up my circadian rhythm in college, because obviously, it was my fault, right?
And then I had kids.
And that didn’t help, because kids exhaust a person. At gentlest, they’re a lot of work. I blamed being more tired than the average parents on my being autistic, because all that sensory input and all that socializing at all times of the day forever is a lot. When I was working AND raising Sam, I’d reach the end of the work day and only have the energy to sit on my rocking chair with him and watch TV, to the great concern of both Kyle and Kat. They worried that me having another kid would result in more of the same, but for a hot minute, I proved them wrong. When the twins were little–not infants, but around the time Sam started kindergarten–we had a good time. We played all day, I was very tired but I could do stuff.
And then the pandemic and then my spine and then everyone started school, and I thought I’d be less tired, but here I am.
I’ve tried all sorts of explanations. The medication I’m on for my nerve issues does make a person pretty tired, so I thought maybe that was it, and that getting off the medication would make it so that I could get through my days without a nap again. The pandemic flushed my mood right down the toilet, and I figured that probably was a contributing factor. I had all of these reasons, and they finally came out when I talked to my prescribing RN a few months ago, frustrated that I was losing more than half of my day to sleep.
Because I love naps, but I like to take naps for pleasure. I like taking naps on days when it’s raining outside or crisp and cool or it’s gently snowing. I like looking out my window and letting nature kind of hypnotize me into a nice, relaxing sleep that doesn’t last too terribly long and makes me feel rested afterwards. These naps don’t make me feel rested. I think the last time a nap made me feel properly rested, I was fresh out of college and working just part time and dozing after work.
So anyway, I talked to my prescribing RN with frustration, and she referred me to a sleep therapist, thinking the issue was that I had insomnia. And, I mean. I have had insomnia in the past. We all have nights of insomnia. Most of mine lately stems from achy legs when there’s a front coming through or else the general weight of “ah, neat, living through yet another major historical event.”
BUT THE INSOMNIA WASN’T THE THING, AS IT TURNS OUT. Because my sleep therapist had me keep a sleep journal recording how long I thought it was taking me to fall asleep and how long I was sleeping, and as it turns out, I’ve been getting upwards of 7-9 hours of sleep every night, falling asleep within half an hour, and doing relatively well with the getting to sleep bit. And I’m even staying asleep, as far as I can tell, for most of the night, and that seems to have been the case for most of my life.
So my sleep therapist and I both said, “wtf” and she ordered me a sleep study. I got all these components that I brought home with me and strapped to my body–one for my chest to register whenever I took a breath, one for my nose to register when air was coming in and out of me, and one for my finger to measure my pulse and how oxygenated my blood was throughout the night.
AND WOULDN’T YOU KNOW. It’s not insomnia. It’s not me being lazy. It’s not me staying up way too late or being unable to handle life. It’s severe central sleep apnea, and it’s probably been with me for a very long time.
This isn’t the sleep apnea that you get when your tongue blocks your airway or your neck is just too heavy to keep your airways open. This is the sleep apnea you get when your brain forgets to tell your body “hey, maybe we should keep breathing” while you sleep. Rather than choking and gasping for air as your airway gets blocked by your tongue, and rather than being fixable with just losing weight or wearing a mouth guard, you just stop breathing.
Which is bad.
Moderate central sleep apnea happens when you have around 30 incidents of not breathing in a one hour period. The night I was monitored, I had 40 incidents, and my blood oxygen dropped to 79% (which is, for the record, REALLY BAD). The pulmonologist I saw after and my sleep therapist both told me to really push the sleep center to get me in as soon as possible so I could get a confirming study that would also see what kind of titration (read: forcing my body to breathe when it doesn’t do so on its own) works best for me.
A lot of people with sleep apnea do well with a CPAP machine, which forces air into your lungs at a steady pressure (set up during that in hospital study to see what pressure you need to just keep breathing while you sleep). Other people do better with a BiPAP, which forces air into your lungs at a harder pressure when you’re inhaling and a gentler pressure when you’re exhaling. And then there’s an ASV, which is a BiPAP that learns your breathing patterns and adjusts accordingly. And it’s all very complicated but necessary because my body cannot do this one very basic thing that it should’ve been doing consistently since I exited the womb.
I’ve got options, basically. And I’m looking forward to them on one level because I am so TIRED of being TIRED. It really is just an emotionally exhausting thing to be this tired all the time; you want to do so much and BE A PERSON, but you only have enough energy to exist. Even the things that are usually fun fall short because you’re too tired to put in the effort you want.
But then I’m also scared because I’ve been this tired for so long that I don’t know who I am without this permanent exhaustion that feels bone deep. Am I going to turn into some sort of raging dictator who’s angry that not everyone is on my level of dragon slaying awakeness? Or will I just be the engaged and clean mom I’ve wanted to be for a while? Will I finally be able to kick my own ass into actual activity or will I just say “nah” and remain a blob but this time able to focus on things?
And THEN I’m frustrated that it’s taken this long to recognize that it’s a problem because I kept dismissing my own health issues and had them dismissed by everyone around me. Of course I was tired, high school and college are hard. Of course I was tired, I was going to bed at 10:00 every night instead of 9. Of course I was tired, I had hobbies outside of work. Of course I was tired, I had a baby and then two babies. Of course I was tired, I was working and raising a kid at the same time. Of course I was tired, there’s a pandemic on and also I’ve got a spinal injury and depression. Why wouldn’t I be tired? Or maybe I wasn’t tired, maybe I was just lazy. Maybe it wasn’t that I couldn’t physically muster the energy to clean and roll around on the floor with my kids and go for a walk and have hobbies and a life. Maybe I just didn’t want to put in the effort. Maybe I preferred to just dick around on my phone because effort is bad, and after all, I am just a lazy Millennial with a rebellious streak or something.
I internalized all of that. And when I think about how that kept me from actually getting diagnosed and treated for so long, it scares me and enrages me. My level of sleep apnea is so severe that it can cause brain damage and seizures; somehow, I’ve gone this long without that, but you can only stay lucky for so long. Since I found out the results of the study, I’ve been afraid to sleep because I know that it’s entirely possible that this would be the night I’m not lucky.
And I’m furious that my exhaustion has been so easy to dismiss for my entire life, as me just being “low energy” or “lazy” or something along those lines. That it never occurred to me that anything about it was abnormal and that it was so easy to say, “oh, that’s normal.” It’s like when I had my gallbladder issues after Sam was born; I found it so easy to dismiss the 11/10 pain because the postpartum time is supposed to be painful, aches and pains are normal after you give birth, etc.
But that wasn’t normal. And this isn’t normal. And I don’t know what it is about me that makes me so ready to dismiss real medical problems that I have, but I do know that I feel vindicated that I haven’t been lazy my entire life, that I may very well be able to handle working and having a kid and having three kids and having hobbies and writing and exercising and all of that.
I’ve just been fighting with both hands tied behind my back.
The other day, I realized I hadn’t written anything the entire month of July. 31 days, no writing, just me buckling in and holding on for the month. And it’s been a month, but it’s been a month where comparatively little has happened, so it’s not like I have a whole lot to talk about overall.
We left the month intentionally empty because I was supposed to have my spine surgery on July 1, which would’ve had me still recovering for the rest of the month and then slowly being able to sit up more and more again and eventually getting my life back, BUT that hasn’t happened. Instead, July was nothing but rain and nothing, over and over again.
I don’t mind the rain. I overheat so easily for so many reasons, and having nothing but rain all month was nice. But despite going on several dates with Kyle over the month of July and despite leaving the house with some regularity, it felt like the month just existed in a limbo of not giving a fuck. And then that ultimately cascaded into me giving too MANY fucks at the very end of the month for a variety of reasons, which is all to say that I spent a lot of last weekend crying and getting a headache from doing so.
It’s basically that whole tripping at the finish line feeling about the pandemic combined with me letting the stress of Kyle not having a job get to me. For the latter, I’m not surprised that Kyle isn’t employed yet because even in the best of times, finding a job takes a minute. And he’s had a LOT of nibbles and basically hasn’t gone a week without half a dozen interviews or technical screenings or what-have-you. But, you know, you try to keep a smiling face despite things not exactly being great and eventually, things are going to crack somewhat. And I cracked. And I’m fine. Sort of. Probably not that much.
My therapist has basically been pointing out to me that I’m treading water right now. Three special needs kids at home, very little break for them from anything. Husband out of a job. Bills coming due. A pandemic (on that point, I am so very sick of catering to people who are so afraid of science that the idea of science helping them is a completely foreign concept) that seems like it will never end. My own health being on the back burner for the foreseeable future.
Yeah, that’s a fun one. When Kyle lost his job, we lost our health insurance. We signed up for a different health insurance through the state website, but shortly after getting on that health insurance, the state called to tell us that no, actually, we had to be on basic bitch state health insurance instead, and that unless we choose the correct basic bitch program through state health insurance, we can’t get actual healthcare for the foreseeable future. No surgery to fix my back, no primary care, nothing but emergency care, but at least we’re covered for that?
Oh, and if that wasn’t enough, if Kyle ever gets an unemployment check (yeah, still haven’t received those, don’t know what’s going on there), we’ll have to report that income to the state and switch health insurances again, but at this point, we’re probably not going to get any unemployment checks until roughly January. Which nobody knows really why. In theory, it’s because Kyle’s previous PREVIOUS employer (not the one from which he got laid off in June but the one from which he got laid off LAST YEAR) needs to confirm to the unemployment department that he’s been laid off from them for a year, but I just???
Like we’re really fortunate to have family helping us through this stressful time, but if we didn’t? Are we supposed to wait for the whims of enormous corporations to ensure that we can put food on the table?
(if anyone was wondering, being on unemployment SUCKS, nobody would do this unless they had to, if you think they would, maybe go read something outside of your own echo chamber for five minutes; also if anyone was wondering, that we don’t have universal health coverage that’s not tied to employment in this country is frankly barbaric)
SO ALL OF THAT TO SAY that I put my surgery off AGAIN. It’s been bumped to at least January now because I can’t imagine trying to get through the beginning of the school year and the potential beginning of a job for Kyle while stuck flat on my back recovering. It’s definitely the best decision, but I feel angry and frustrated and stuck. I want to do so much and there’s so much that could improve my physical and mental health, but I’m so afraid of triggering that severe pain again before I’m in a place where I can have surgery to repair it, so I end up being a lump on a log, which really just makes everything worse.
Hence the treading water thing. Hence the not writing. Maybe I’ll have more to write about later. I don’t know. But right now, I just feel so drained and angry and stuck that it’s a more exhausting experience than it should be.
I started writing this a couple of weeks ago because I was feeling ranty, and I don’t even remember what I wanted to rant about (C-sections and autism, I think? Tl;dr – my C-section was amazing and I would do it again, Autism $peaks sucks, and autistic people like myself and my kiddos need acceptance, not just awareness, the end). And now, I’m looking at it like (a) I’m not in a ranty mood anymore, so I’m not going to rant; (b) my blog is WAY too depressing, WAY too often; and (c) what if I want to talk about good stuff?
So you’re not getting a rant today. Sorry!
Instead, you’re getting me cheerfully updating you on my life, why I’m feeling optimistic, and what’s up next!
BIG OPTIMISTIC POINT #1: SHOTS!
My name is Abby, and I am FULLY VACCINATED AGAINST COVID-19!
Obviously, all sorts of crazy things could still happen. The world is still in some measure of chaos, and who knows what variants might come from Brazil or New York or something. I sincerely doubt anything will mutate so much that we’ll be back where we were in 2020, but anything is possible.
BUT for now, I am 90-someodd percent protected from getting infected. And oh, my god, it feels so GOOD. And even better, almost my entire family that can be vaccinated is very close to the same boat! My dad got fully vaccinated around the time I did (I qualified earlyish because of my asthma and obesity, he qualified earlyish because of his old) (ha ha), and my mom and Kyle both have one shot under their belts. My sister is up next once I find her an appointment next week (I’m the family’s designated “vaccine finder”), and I keep hearing from people I love that they’ve finished their second shot, that they’re fully vaccinated.
And I know that *technically* we’re not supposed to jump right into everyone hanging out again, but GOSH, I just really want to go and give my aunties and uncles and cousins very tight hugs because I haven’t seen them in forever. And I can’t wait to see people in person after canceling playdates and get togethers all last year. Two of my cousins had babies in the last year and I haven’t even showered them with gifts like they’ve done for my babies yet! And we’re all so close to being vaccinated, and I’m just like AUGH please please PLEASE let us be able to get together for the Fourth of July, that would be amazing.
(granted, I will probably be on copious amounts of painkillers–more on that later–but I wouldn’t miss it for the world)
My favorite, favorite, FAVORITE shots moment came really early on when my friend who’s an ICU nurse got her shots. She’s been really heavily on the frontline this entire time and has been so strong and brave (which, I remind everyone reading this, doesn’t mean she hasn’t been afraid or had moments of weakness, but that she accepted those facts and continued to be the amazing, compassionate nurse she is anyway), and knowing that she isn’t going to get Covid was just like…
(I don’t even have words for it, so just picture me squealing with delight and bouncing)
The pandemic is far from over. There’s still a non-zero chance that my kids will get sick, and that makes me very nervous, BUT the risk is decreasing pretty steadily. Shoot, look at death count graphs lately, and you see a very sharp drop-off starting about two weeks ago, at least in states where the most at-risk got vaccinated first. These vaccines work. When I got my second shot, I teared up a little bit, not because it hurt, but because it feels like a genuine real time miracle: the world got together to fight back against a collective horror and we’re going to win. It is amazing what human beings can do when we stand united.
And related to me getting my shots…
BIG OPTIMISTIC POINT #2: PLANS!
I have plans.
Maybe it’s just how my autistic brain functions, I don’t know, but I am at my absolute best mood-wise when I have plans. I love looking at the future and being like “oh awesome, something to look forward to.” And honestly, the pandemic rained on that particular sort of parade a lot, because you just couldn’t plan for anything. Inevitably, things would close or get cancelled, and you’d be stuck at home, thinking too much about Tiger King or something (seriously, how was Tiger King a whole-ass year ago?).
But I’m vaccinated, Kyle will be fully vaccinated as of May 6, and we’ve got plans.
Plan number one is our anniversary. We’ve been married for ten years as of May 22, and I was feeling mildly sulky about it not being as big of a deal as it could have been because of Covid, but then vaccines actually worked and I was like, no, you know what? This is a big deal. We’ve been through a lot together, some really difficult years, but what we haven’t been is on a real actual date without the kids in more than a year.
So we’re going on a BIg Date, by which I mean we’re flying to Florida for a weekend.
It’s a risk, but it’s a calculated one. We’ve been reading every article that’s come out about Covid, variants, and vaccines for ages. We’re not data scientists, but we’re human, and while we’re not crazy about the idea of being in a plane with recycled air for three hours, we’re also vaccinated. So we booked a first class flight (anniversary trip, plus it ensured we wouldn’t have to sit next to anyone who didn’t share a house with us, AND it meant that we could be in the absolute front row with nobody’s air coming back at us), we rented a car, we made the plans. Of course, we’re hitting Disney. Of course, we’re getting our toes wet on a beach. Of course, we’re still going to the Melting Pot.
And I feel beyond excited and also a little stunned, like is this really a thing that’s happening? I half expect everything to get cancelled again, and it may very well do just that.
But oh, to TRAVEL again. The thrill of going places, of using tickets, of the smell of stale coffee and exhaust, of announcements over a PA and the knowledge that something exciting is happening, I’m just over the moon about even being in an AIRPORT again.
And then we get back, and life is going to continue! I’m getting new glasses! I’m prepping Sam to go back to school in the fall!
I’m having surgery!
BIG OPTIMISTIC POINT #3: BACKS!
Remember back at Thanksgiving, when I had such agonizing sciatica pain that I went to the ER and they were like ‘mm, that’s nice’ and gave me a nerve blocker and a lot of painkillers and promised they’d follow up but very little came of that because everything is 6000 times slower because of Covid so I’ve been gradually feeling more pain ever since and panicking about the idea of it getting WAY worse and me basically having to shit in diapers all the time?
(my brain is a fun place)
So despite Covid delays, I did get to see an orthopedist in January, and he recommended that I go get an MRI. The MRI was its own fun thing because they were already booking a month out, but then Kyle’s company switched insurances at the beginning of March (and my appointment was initially on March 5, I think?), so they had to cancel the appointment, get approval from my new insurance, and rebook the appointment.
The new insurance said they wouldn’t cover the MRI because I hadn’t met my deductible yet, so the office just. Didn’t rebook it. And blah blah blah, I basically had to call them and say I’d pay out of pocket for it, which, long story short, is part of where our Biden bucks went (more on those later). So my MRI, which was supposed to be at the very beginning of March ended up happening at the very end of March. And it was a fine experience. I got there before sunrise, lay perfectly still in a loud machine while looking at pictures of a calm beach, and then was told I’d have my results soon.
So here’s my back:
At the very bottom on the left, you can see the root (haha) of all my problems: a herniated/ruptured disc that’s compressing my S1 nerve root between itself and my magnificent bone spurs. On the right, you can sort of see the way the erupted disc material is covering up the nerve in question, which is why I can’t feel any of my inner thigh and otherwise feel like cold lightning is shooting down my left leg. It’s really fun.
The first doctor I saw wasn’t too big on the idea of surgery; he wanted to start with conservative approaches, like epidural injections to just turn off the whole nerve for a while, which would’ve been great back in October when the problem started. But now, it’s the middle of April, nothing has gotten better, and I just want to get my life back. And I know that surgery doesn’t guarantee me getting my life back, but I feel like it’s doing more than just putting a booboo bandaid on it and wishing me good luck.
So the second doctor I saw agreed, but said that the surgery might be somewhat complicated by my size (because I am, in fact, fat), since their retractors are only so big, so if they can’t reach my spine during the surgery, they can’t do it. BUT in either case, they scheduled me for surgery on July 1 (and I’m like HNNNNNGH SUFFERING FOR TWO AND A HALF MORE MONTHS THIS WILL BE FUN), so we’ll see what happens. I’ve been judicious about my diet since that point (save for Easter week, when I just ate brownies and chocolate bunnies as quickly as possible so they’d go away), and I’m hoping to find a way to walk every day (which is harder than it sounds, since we live on a very steep hill, like it feels like a 45 degree grade, and that is B A D for herniated disc spinal issues).
But either way, we’re actually doing something, and I know where the problem is now. Once the surgery is over, I can reenter physical therapy and focus specifically on healing that area instead of just doing general stuff and hoping it works (which I think actually made things worse before). And with any luck (read: hard work on my part), I can finally put my back behind me.
BIG OPTIMISTIC POINT #4: MISCELLANEOUS!
And a list of other miscellaneous things that have me happy right now:
We bought a new (to us) van yesterday. A 2016 Honda Odyssey fancy pants version with heated leather seats and screens in the front and a cooling box and seating for eight and rear temperature control and SO MUCH SPACE and everything about it is wonderful. It’s a little bit of a price stretch at the moment, BUT it’s worth it because our old van was basically falling apart at the seams.
Sam is finishing up his testing to go back to public school in the fall. A lot of it relates to him being almost obviously on the autism spectrum and scoring SUPER HIGH on ADHD tests, and we want to make sure that he’s able to get whatever accommodations he needs in school next year so that he doesn’t fall behind at all (because he’s absurdly smart but he’s also very… mmm, executive dysfunction-y). We’ll be having that meeting the day before Kyle and I leave for Florida next month and with any luck, they’ll really see him and be able to give him whatever accommodations he needs next year.
The twins continue to excel in school, which is wonderful. Their vocabularies are soaring, and they’re absolutely loving their class and their friends. Carrie, who was already pretty conversational, has added so much vocabulary to her speech, and it’s hilarious. She’s got enough vocabulary to express herself more clearly but she also sometimes grasps for words, like the other day, she wanted us to close the car windows because they were messing up her hair, so she said, “Turn it [the windows] off! My hair is not working!” And that was adorable. And Isaac has gone from being incapable of expressing himself when things are hard to being able to confirm in words what he wants when we ask him. Today, he informed me that he wanted the lights turned back on in his bedroom (because he didn’t want to sleep yet), and he’s just overall been so much more talkative and happy because he has words and is understood.
Also the cats are awesome. And Kyle is awesome. We’re all awesome.
Spring is trying its best to start in these parts, and thankfully, it feels like life itself is coming back to life. And that’s a good feeling.
I feel like this blog has been an absolute downer for the past year, though understandably so. The last year has SUCKED. I don’t think anyone had an objectively good year last year (except Big Daddy Elon Musk, but billionaires don’t count towards people having good years), and I was scrolling through my blog reflecting on how… just MLEH I’ve been about everything in the last twelve months. And again, completely understandable, but also I feel like that can’t have been fun to read. I’m sorry.
But here we are, encroaching on March 2021, one year of pandemic and social distancing and 500,000 people dying because assholes and masks and so on and so forth, and I’m actually starting to feel something that tickles a bit like hope. Real hope, not the false hope that kept popping up over the last year when people were naively like “it’ll be gone by summer!” or things like that. Real, honest-to-god hope.
After all, this is roughly the timeline they told us to expect back in mid-March of last year, when everything shut down and everything changed. Mid- to late-2021. We’re right on schedule.
I’m getting my first Fauci ouchie tomorrow, 4:30 p.m. I don’t think I’ve been this excited about a needle since the first injection for IVF, way back in 2016. My state, dear old Massachusetts, has kind of bungled the process for people to make appointments–my dad, 68 and with a heart attack in his medical charts, hasn’t been able to get an appointment, so I’m refreshing all sites frequently to try and snag one for him–but by some flash of luck, I woke up the other day to an alert on my phone telling me that a CVS near me had appointments available. I fit squarely into Tier 2 of the second phase of vaccine rollout up here–obesity and asthma qualifying me as medically at risk of a Bad Time–so I signed up.
And I’m ready.
(even if I’m a bit frustrated that Massachusetts hasn’t bothered to start prioritizing teachers yet while other states have and the websites to get appointments are basically strung together with some twine and duct tape and a few prayers and GOD, I wish I could take a hammer to said websites and get my handful of coding friends to rebuild them functionally from the ground up)
I have plenty of friends who’ve already been vaccinated for various reasons, ranging from frontline workers to teachers to people with medical issues and everything in between. Of that plenty, many have experienced the “your immune system is working” side effects–the aches, the fever, the chills, the generally feeling like shit from about hour 33 to hour 48 after the second dose. I’m ready for that. Kyle’s been keeping in touch with his boss about what’s going on, so with any luck, when I get the second dose, I can just coast through all of those side effects feeling vile but being mostly unconscious.
But I’m ready. I’m ready to not be afraid to go places besides Target or to not be afraid when I’m IN Target because the people behind me don’t seem to grok that six feet and six inches are not the same thing. I’m ready to feel like I’m not going to be putting myself in more danger if I have to go to the doctor for whatever reason (seriously, in the past year, I have avoided going to the doctor so many times I probably shouldn’t have because I didn’t want to accidentally expose myself). I’m ready to hopefully not be a link in a chain of people getting sick (like we don’t know yet that the vaccine prevents or reduces transmission, but the science–even with the new variants–looks pretty good so far).
And I mean. When even the most conservative estimates have everything easing up by summer, it’s hard not to be hopeful, outside of the trenches.
(in the trenches is another story, and every time I talk about hope, I think of my friends who do work on the frontlines and wish that I could somehow have a million dollars each to give them so that they could go on the most luxurious, relaxing, magical vacations of all time. Like hell, wanna spend two months on sabbatical in Hawaii? Go nuts, aloha. French Riviera whispering your name? Au revoir, you amazing heroes)
I’m getting vaccinated tomorrow, and then the twins turn three on March 14 and start school on March 15. Sending them in person isn’t a decision we made lightly; even though the school they’ll be attending has had exactly 10 cases out of 300 students and about 50 staff (and none of them in the preschool), the risk isn’t zero. On the flip side, though, Isaac has stagnated and regressed so much since daily ABA stopped, and I HATE phrasing it like that because it makes his autism sound like this horrible thing, and it’s NOT, but at the same time, I can feel how badly he wants to communicate with us, and goddamnit, I can try with the rudimentary PECS and I can say the words and do all sorts of things as his mom, but because I’m his mom, there’s a lot I can’t do. I’m not trained or qualified to do so much of it.
He really was making such incredible progress when he had ABA five times a week, and I know the language is there. And he wants to express himself and is SO HAPPY when we understand him. And preschool will give him an opportunity to be better understood, whether that’s vocally or through signs or through PECS. Whatever he needs. I just want him to not feel like he can’t be understood, because to me, that’s about as lonely and terrifying as it gets.
And Carrie is something of a ragdoll. She’s clever and sweet, and where communication is concerned, she’s at age level if not above it. BUT when it comes to physicality, her muscle tone is almost comically low. She seems comfortable wherever she is, which is great, but she gets tired quickly because she has to put more effort into making her muscles work than a kid like Isaac (whose muscle tone has always felt high to me because he’s always. so. tense.) or even Sam does. It impacts her ability to use her fine motor skills with holding a pencil or getting herself dressed and undressed, and I have no doubt it’s impacting her digestion. In the long term, it’s going to cause problems for her–she’ll be in pain, and I don’t want that at all. And if we can get started fixing it now, if I can get her therapy now, maybe she won’t follow in my footsteps and end up in remedial gym or getting an MRI for sciatica and feeling like she’s in her 90s when she’s not even 40 yet.
Plus, they’re SO good with masks. It’s kind of surprising, honestly. I would’ve expected the twins to just hate wearing a mask and to fight it all the way, but the two of them are absolute champs. They even have Barbie and Hot Wheels disposable masks along with the other disposable masks I’ve gotten them for the remainder of the school year. I think we’ll be okay. I think they’ll thrive in school, and I think we’ll be okay.
For the first time in forever…
…I can kind of see the rest of the year clearing up, like the way the sky clears up when it finally stops raining after a particularly long stretch of wet days. I feel like when I say, “when the kids go back to school in September…” I’m not doing some sort of wishful thinking; I’m saying something that will happen. When Sammy goes back to school with his friends, when the twins are in preschool five days a week, when I see my extended family for the first time since Christmas of 2019. WHEN, not IF.
Speaking of Sammy going back to school (WHEN that happens), I got in touch with the special ed department at his school to see if they could evaluate him for ADHD and autism or at least just to see if he has anything that would require an IEP to deal with in the coming year. His therapists have him on a waitlist to see if he can be evaluated outside of the school, but because of Covid, that waitlist is excruciatingly long–we’re talking years–and I don’t want him to start second grade at a disadvantage. I know that whatever else is going on, he deals with a lot of executive dysfunction and hyperfixation. I know that his mind goes so fast from one thing to another to another, I know that he acts like boredom is torture. I know that the idea of failing at something even a little brings him to tears, no matter what reassurances we offer. I know that if he’s asked any question about himself, no matter how benign, he shuts down and furiously refuses to answer.
I don’t know what that all adds up to. I do know that it affects his schoolwork. That he melts down when something is hard for him, that it’s an absolute WAR to get him to do his social studies and reading. That he doesn’t focus, can’t really focus, even on subjects he loves. But give him Pokemon or Minecraft or the deep sea, and he will tell you everything in excruciating detail. That he’s terrifyingly smart–doing third grade math as a first grader and absolutely OWNING it–but that he needs someone to help him apply that intelligence.
And I don’t know. Maybe it’s that I’m not as good of a teacher as I like to hope I am. When he’s on, he REALLY gets stuff. He’s getting straight As in math without even blinking, and I think he’s doing okay with improving his spelling and handwriting, but I feel like there’s something about his learning style that’s out of my reach, and if nothing else, I’d like to see if the staff at his elementary school can identify it.
A lot on my plate. Again. I can sort of feel my sciatica flaring, but I’ve been more careful to take time off and be diligent with my medication because I am NOT doing that again. I have an MRI to look at it up close on the 8th, and until then, I’m just taking it all one day at a time and knocking items off my to-do list little by little.
And feeling like the sun is starting to peek through the clouds. Which is nice.
This year, when we went to my parents’ house for Christmas Eve (we basically see them every week anyway), my mom talked about how she’d felt a bit like Christmas was another thing on her to-do list sometimes. That with everything to check off–the decorating, the buying, the wrapping, the cleaning, the cooking, the baking–it can feel like it’s just another Thing. And Christmas is absolutely my second busiest time of the year, no doubt. The March-through-July stretch is still a LOT crazier because every event every month in that stretch is a Big One, not an optional one, and none of them are my birthday.
So yeah, Christmas is a crazy time of year, but it’s usually also a rewarding time of the year. Sure, I’m pulling my hair out somewhat when we try to finish up on Christmas morning so that we can get to my uncle and aunt’s house before everyone settles in for dinner, but then there’s the catching up with everyone and the laughing and meeting new babies and new boyfriends and sometimes, my uncle makes this amazing saffron cream pasta that makes you understand why people pay so much for saffron…
Which isn’t to say that this year wasn’t rewarding. It was, just. You know. Different.
Like all of 2020.
We’re still combing through everything the kids got. My parents and Kyle’s parents spoiled them, of course, because that’s what grandparents do, and our playroom is currently overflowing with both (a) boxes, and (b) toys. We’ve been bringing things out one at a time, all while trying to sort through what’s in the living room and find places for that.
Sam got a pair of robots and some video games for Christmas, along with a few Lego sets, because he’s frustratingly easy to shop for. He’s one of those kids whose interests are narrow and specific, so on the one hand, you know exactly what themes to hunt down in toy sections; but on the other hand, you’re just like… I really want to get you something different, but all you want are these things. But he’s seemed pretty happy with what he got, and I feel like his gifts have much more staying power than the twins’.
Isaac was the one I thought would be least impressed with his gifts, but to my absolute surprise, he’s the kid who took to everything the fastest and has been playing with his gifts most consistently. Santa gave him a singing Mickey Mouse train, Kyle gave him a weird musical toy called a “Rocktopus,” and my parents gave him a little red Playmobil minivan. The train and the Rocktopus are never NOT singing, and the minivan, despite being hard as a rock and full of breakable things, has become his first ever “must have it in bed with me” lovey.
And Carrie, who is every little girl ever, received pretty much the best gifts for every little girl ever: an Ariel doll, a makeup table (for pretend makeup, of course), a dollhouse, and a dress up gown with accessories. She’s been frolicking about the house in a whirl of joy, and when she’s done being whirly and joyful, she falls into my arms, sighing happily and saying, “Oh Mom. I you so much!” (which is her way of saying that she loves me so much)
So it’s been good. And Kyle and I spoiled each other, too (I gave him Whataburger sauces and a fancypants sleep mask; he gave me jewelry and my very own fountain pen), and we spent Christmas Day doing nothing but watching movies on TV while eating popcorn and pretending that it was a normal Christmas and we were totally at our local theater and not scrunched up on the couch and saying things like “SAMUEL MATTHEW, STOP RUNNING RIGHT NOW.”
We saw Soul first, and it was honestly one of the best Pixar movies I’ve ever seen. It’s hard to explain it because the plot is kind of loose? And the message is kind of loose? But it also was a film that wasn’t escapism, that didn’t want to be escapism, that wanted you to leave the theater-slash-living room and go live life, not just exist. And it was heavy material, but it was handled in a strangely effervescent way, so that even though it was a lot of DEEP questions that required a lot of heavy pondering, you didn’t feel bogged down by them.
And it was gorgeous and made me more determined than ever to take the kids to New York when this craziness is over.
Wonder Woman 1984 was… eeeeeh. Kyle and I watched it after the kids went to bed, having our first “date” since the pandemic kicked in, and… eeeeeh. There was a scene at the very end that had us both sobbing, Pedro Pascal and Kristen Wiig did great jobs for the most part (the CGI got in Kristen Wiig’s way towards the end, which was a shame), and there were some fun moments, but… eeeeeh. It was disappointing. I didn’t go in with super high expectations, and even my lower expectations weren’t quite met, so that’s a shame. Still one of the better DC movies but… eeeeeh.
And thus the year is finally, finally drawing to a close. I know that the world in general won’t turn a magical corner on January 1 that has everything back to what we want it to be (though wouldn’t that be a trip), but at least we have the vaccine and a new presidency to shake things up a bit, and hopefully, by this time next year, I won’t be digging for scraps of things that made this year good.
It’s funny. Back last December, I bought a memory jar for us to keep this year, figuring we’d have a lot of cool memories to read about on December 31 as we counted down to midnight. It didn’t last long, mostly because mindfulness, while awesome, is one of those things it’s harder to do when you’re in the trenches of motherhood. You know what I mean? Those days, those weeks, those years where you give all of yourself and then some, and you take a shitton of pictures, not to show off your awesome mommy skills or embarrass the kids in the future but because you can’t be in the moment. You’re clinging by a thread, and you want to remember the good, but you can’t focus on it because the bad keeps showing up.
It’s not been the worst year for me; by comparison, we had it pretty easy. Despite Kyle losing his job in the spring, he got a MUCH better job in the fall, one that pays more, even if the benefits need some work. Sam being homeschooled has meant I can really focus on him for hours at a time, despite the twins, and he’s been able to get a more individualized learning plan (read: my six-year-old is doing multiplication and division without even thinking about it, and it’s weird). He and I have had more than a few outdoor adventures, including a really fun hike back in October (sigh, that was roughly the last time I felt healthy enough to get out and go) and a visit to a nearby pond.
Sam and Isaac both started therapy (in December and March, respectively) to help deal with everything. Isaac’s ABA has been better than I expected and not the nightmare I’d feared; Sam’s therapy has just started, but I can already see how he’s much calmer on therapy days than on days when his therapists don’t come. They’re both doing really well, and wildly enough, they’ll both be starting school again next year… in March and September, respectively.
I was hospitalized for my mental health, and I’ll be real, it’s a miracle more people haven’t done that this year. I’m lucky: my husband noted that I was doing really badly (I legitimately do not remember this summer, that’s how bad it was) and MADE ME get help. I learned the difference between wanting to die and being overwhelmed by life (there is a difference), and I learned actual real coping skills. I’m starting maintenance therapy next week so that I can focus on keeping my brainmeats healthy instead of letting them slip and slide and become a mess again.
I have a path forward for my physical health: my doctor has finally referred me to an orthopedic specialist for my back, and with any luck, I’ll have a specific way to get to a point where I can actually get out again (like I feel like I could now, but it’s cold and I’m also terrified). I survived the worst physical pain I’ve ever felt this year, somehow (wild thing about sciatica being that you’re in the worst pain of your life, pain so bad it gives you PTSD, but you are nowhere near dying, and when the pain ebbs, people mostly just tell you to walk and lose weight, like they do whenever you have a problem while fat). I had surgery and ruled out a major potential cause of my overall life issues.
So it hasn’t been an all bad year for me. But I’m still eager for it to be over.
I don’t necessarily think 2021 is going to be better overall, at least to start, just that we’ll all mostly be used to the chaos, so it won’t hit as hard. And slowly, slowly, things will get better. Plenty of people will still be idiots, of course, because that’s the world we live in, but idiocy can be mitigated by good people doing good things and stopping bad things. It’s going to be rough going. None of the positive things are quick fixes; they will take time, and they will need a lot of pressure, and just because things are no longer at an immediate boiling point does not mean things are better. Creating a better world is a true effort.
With that in mind, I decided that no, 2021 is not my year. It is my bitch. I am transforming myself into a screaming banshee of rage and forcing things to get better. I will scream and I will fight and by this time next year, I will be able to say, “you know something, that wasn’t a half bad year after all.”
It’s finally mid-December, which means we’re ~20 days away from this hell year being over. The FDA has approved the Pfizer vaccine with shots beginning ASAP (I think someone in the Massachusetts government was saying that the first shots would be going out on Thursday), so there’s a light at the end of the Covid tunnel; and a new president will be inaugurated on January 20 (although he’s not as progressive as I’d like, it’ll be nice to wake up without that sinking sensation of pure dread for a little while).
In my house, things are busy and have been, to the point where my body is 100% telling me to slow tf down, but it’s like… I can’t, because if I do, everything falls to pieces. I’m not saying this because I’m being overdramatic; sometimes SAHMing feels like being the manager for an entire company.
But I digress.
I said last time that I’d been planning to write about sciatica, and boy do I have a story. Towards the end of my partial hospitalization program, where I was feeling mentally healthy and ready to get there physically as well, I woke one day with excruciating back pain. Nothing touched it–not NSAIDs, not Tylenol, not warmies, not stretches. When I went to the doctor for it, the x-rays showed that I basically have (a) mild scoliosis; (b) bone degeneration; and (c) bone spurs in my spine, which explains why I’ve been prone to throwing my back out since I was in college.
(it was November of my junior year, I had just turned 20, and I had a lot on my plate: finishing out the semester, providing stage manager/dramaturgy stuff for our chamber choir’s Madrigal Feast, violin lessons, pulling my act together for a semester studying abroad at Oxford University, plus all the typical late-teens/early-20s drama that comes with being a college student. Oh, and that’s when I first got diagnosed with asthma and what’s probably chronic bronchitis, so yeah. A little on my plate)
My doctor had me go to physical therapy, and I was slowly getting better, but I’d also have days where I’d get worse. The pain seemed to be doing weird things, sometimes being very calm and manageable and other times being too bad for me to get out of bed. Eventually, by about mid-November, I found that I couldn’t sit up for long periods of time. I had to lounge on the couch or in bed with my legs and back in a specific position or else the pain would become unbearable. I started using a TENS unit regularly, trying to confuse the nerves in my back and leg, where the pain had now spread, and while the massage was pleasant, it didn’t do much long term.
This all came to a head in the days leading up to Thanksgiving. Even without the usual hubbub (read: 20 something people at my uncle’s house and baked brie and so many desserts and family for days), I had plans to bake cinnamon rolls and cookies and green bean casserole for our more subdued holiday (my parents, whom we see pretty much every week anyway, were hosting and making the pies). The Tuesday before, I had physical therapy first thing in the morning and felt GREAT, but that afternoon, we did pictures with the kids…
…which, don’t get me wrong, turned out AMAZING, but once we were done, I was in too much pain to do anything but go collapse in bed. I wanted to be at my best on Thanksgiving, so I decided to spend Wednesday in bed, recovering.
Well, silly me, because that’s the opposite of what you should do with sciatica, especially if it’s caused by a herniated disc (which I suspect mine is). Being horizontal spreads the disc material out and makes it bulge out more when you eventually, inevitably stand up (because I am not going to get a fucking bed pan for sciatica). So Wednesday wasn’t too bad at first–I spent the day lying on my stomach, doing press-ups as instructed by my therapist, and listening to hypnotherapy and guided meditation on YouTube to get my mind off the pain.
BUT sometime Wednesday night, all the things I had been doing just… failed. And Thursday morning, I woke up in blinding agony.
I have pain rankings, and this was only the second thing in my life to hit a 10. The first was gallstones, and those rank lower if only because they’re temporary. Once the gallstone breaks up or passes, the pain fades, and you go back to your life until it happens again. With sciatica, though, sitting and standing and walking and doing anything hurt like hell, and if you don’t figure out how to take care of it well, you eventually get to the point where there is nothing BUT pain. Pain is your existence, and you can’t remember a time without pain, and you can’t imagine a future time without pain, because that’s all there is.
Eventually, I was screaming. Just mindlessly screaming because it hurt so much. My primary care doctor had suggested that if my pain got this bad, maybe I should go to the ER, but I’d been avoiding an ER visit because our new health insurance has terrible copays for everything, to the tune of “an ER visit before you’ve met your annual out of pocket maximum will cost you at least $3500, and if you HAVE met your out of pocket maximum, you’ll have a $1000 copay.”
(MAN I am so glad that we pay 20% of Kyle’s paycheck to get THIS insurance instead of however the fuck much we would pay to get universal healthcare, like WOO this is so much better than living in Denmark and getting taken care of for the low low price of FREE)
But we called the ER and said I was on my way, and then I couldn’t even sit up at all, so we called an ambulance. I had to wait for the ambulance in the living room while screaming and crying and shaking from pain, and Sam had to see me like that, which I hate. I don’t remember anything about what I said or thought beyond “I hate that Sam is seeing me like this”–allegedly, I was telling the EMTs that I hoped they were going to get to have turkey, and I was really worried about making sure they’d have their turkey, but I don’t remember any of it.
They were great, as I recall–they gave me a nasal shot of fentanyl to take the pain from an impossible place to a place where I could be transported, and they were really funny. The pain did not go away completely from the fentanyl, but I stopped screaming for the ride and managed to get to a point where I was just lying there, quietly hurting, with nobody helping me.
That was probably the second worst part (the worst part was Sam seeing me like that)–being in the ER and nobody being there to even check in with me. They looked me over once I was there and gave me like… whatever generic painkillers they had available and eventually did prescribe me a nerve blocker called gabapentin, which has done WONDERS. BUT it also reminded me why I hate going to the ER for anything ever, because unless you’re dying or possibly dying, they sort of don’t pay attention to you at all.
And that’s understandable–there are a lot of people coming in and out of the ER, sometimes just to get painkillers, sometimes just to get an ultrasound of their baby, sometimes just because they’re like. Itchy. It’s especially bad now with Covid and people having to go to the ER because they might have it (on my way out, I saw three rooms designated as Covid-only). And I didn’t WANT to go to the ER, but my pain just got to an impossible point.
My therapist helped me with it this week. She told me that one of the hallmarks of chronic pain is that eventually, your body is too tired to try and fight it off, and the more you have on your plate, the harder it is for your body to work through the pain. Which was like, wow, I didn’t come here to be attacked like this, but that makes way too much sense.
There’s not much of a choice in the matter, of course. Kyle’s job doesn’t necessarily demand too much of him (he’s able to come out and help when I really need it, especially since after the ER), but he’s still working full time, and I’m full time with the kids. Especially during the holiday season, that means that my daytime hours basically evaporate, because there’s so much that I need to organize and do and make sure of, all while I’ve got three kids asking things of me at all times.
I’m not complaining. I love being a stay-at-home mom. But I think I might be reaching a pandemic breaking point, because said pandemic has unquestionably made things MUCH harder. There’s no chunk of afternoon time where the twins are napping and Sam is at school where I can just focus on getting household stuff done, whether it’s cleaning or setting up appointments or paying bills or whatever. There’s no time when I’m awake and not exhausted where I can just be.
I think I’d be able to bear it much more if I weren’t prone to chronic pain, but when you add all that work to the work of bearing chronic pain, the pain gets severe that much faster. You’re already exhausted from the everything–the kids jumping on the couches and knocking each other over and batting at Christmas ornaments because they want to be kittens, the homeschool battle because even on good days it’s a battle, the trying to keep up with everyone’s therapies like ABA and speech and coordination and whatever the fuck, the socializing that starts to feel like work because you’ve been overwhelmed with people being literally ON you all day, the weekends where it used to be getting more done but are now just gasping air before being pulled under again–and then the pain creeps in.
And pain is so exhausting. I remember when I was younger and used to get excruciating menstrual cramps (I found out while trying to have Sam that I had a tilted uterus, which has fortunately fixed itself since having kids, but let me tell you, it’s a for-sure recipe for very bad periods), I’d reach the end of the day and just fall asleep for 18 hours straight. There are a lot of ways to think about pain that involve accepting it and trying to help your body cope with it better, but sometimes, it really is just a battle that you end up losing.
So here we are in December. I can tell that if I weren’t on the meds I’m on, I’d be in a lot more pain, but the gabapentin is doing the excellent work of keeping the pain manageable, as long as I don’t push myself too hard and keep mobile. Sciatica is a weird thing where the more you’re able to stay mobile and keep exercising, the better it gets; but at the same time, when it’s at its peak, the pain defies belief, and all you want is for someone to just knock you out so you don’t have to deal with it anymore. BUT the meds I’m on make it possible for me to stay mobile, and I have a timer set on my phone that reminds me to get up and loosen up every two hours or so (I call it my dance break, and the twins participate, and none of us are very good dancers).
I keep doing Everything because I have to, which is something I keep thinking whenever someone remarks on us having two-year-old twins (and also three four-month-old kittens, more on that in a second) and asks, “how do you do it?” The only answer is that we do it because we have to. We had these kids, and we’re going to make sure they thrive. And there’s a light at the end of the tunnel–as I’m writing this, the FDA is an hour past approving the Covid vaccine for emergency use. By the time the twins turn three in March, we should be well on our way to getting our jabs, and in any case, the twins start preschool March 15 (assuming all things run smoothly). That will make things easier.
But in the meantime, I’m sitting here, feeling my leg be numb because it can’t hurt, and knowing that I can’t stop juggling all these balls or else everything falls apart.
And in the midst of all this, we adopted three kittens!
Honestly, they don’t add a lot to the load. We’ve been on waiting lists since Tinkerbell passed because I cannot go a long time without a cat, and the shelters we applied to wanted to make sure they paired us with kittens that could thrive in a house with three kids. I got the call Monday about a litter of five cats that had been raised with kids about Sam’s age and the caveat that I had to bring all three kids to meet them and the kids had to behave or else the kittens wouldn’t come home with us.
We went in wanting just two, but of the litter of five, two had already been adopted, and these three were the only ones left. And we couldn’t just LEAVE them, so.
They also kind of adopted us. Each one snuggled up to us and purred and rubbed against our legs and force pet us (you know, when cats bump their heads against your hand like “LOVE ME” and you’re like “I already do?” and they’re like “NO LOVE ME” so you do), and… well, they’re necessary. Not because we have any sort of mouse problem, not because I need more on my plate, but because they spark joy. A whole lot of joy.
Biggest brother is Duke Orlando Stinkybutt Catrissian, so named because he farts like an unholy terror. He’s a little fighty, but only with me or Kyle; with the kids, he keeps a respectful distance unless they’re petting him. He’s the most adventurous of the trio, most prone to getting into trouble and the murderer of at least one tree ornament.
Then we have Duchess Oreo Zoomies the Experience, who has established herself as Sam’s Cat. He named her–he saw the pictures of the kittens and decided that her name should be Oreo because she’s black and white like an Oreo. She ADORES Sam–hunts him down wherever he is and snuggles up with him. And she’s been so good for his anxiety, too, helping him to calm down and feel safe enough to sleep, even when he’s worried about something. She’s almost as much of an explorer as Orlando and is highly prone to Zoomies at all times.
Last, but certainly not least, is Duchess Orla With the Chanel Boots…
…who is Mine. She established herself as Mine when we were meeting them and she only came out to socialize with me and Carrie. She’s the shyest of the three, only really coming out for cuddles when the kids are safely in bed and Kyle and I are in a quiet place. Once she’s out, though, she’s a party animal but very ladylike about it. She’ll mince around the covers and attack our feet with the same attitude as Miranda Priestly going after an incompetent staffer. She’s adamant about being held but will also fight me forever about the cat pouch hoodie I bought (yes, I am being That Kind of Cat Mom).
And, well. It may have been biting off a lot, but I feel like the joy and stress relief they give with their cuddles make up for the buying food for three cats and scooping a litter box again and “what are you chewing on???” and “GET OUT OF THE TREE” and “Isaac, it is REALLY ADORABLE that you’ve decided to pretend you’re a kitten, but if you try to climb the Christmas tree, nobody will end up happy” and the “yes, Carrie, the kitty is sharp, have we learned a lesson?”
They’re necessary. They don’t feel like more on my plate. They feel like they’re individually taking the stress of having so much on my plate and dissolving it, and that’s a nice feeling.