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I want to use a desk, but I can't get myself to stop using my bed due to a complex tangle of issues (autism, chronic pain, etc.). What should I do?
Author's note: I'm mostly typing this up for myself as a writing exercise to sum up my situation, so that I can present it to a doctor one day if I can find one who will listen. It's a long read, and I don't expect anyone to seriously read it? But, if you happen to make it through and have any advice, or recommendations for specialists I could seek out, I would really appreciate that.
I work remotely as an open source maintainer for a university research lab, so I spend a lot of time at my computer. Throughout my adult life, I've found that I work best when sitting in my bed with my laptop. Yet, I figure sitting in my bed isn't the best for my body, so I've tried hard over the years to make a desk setup that's as accommodating as possible:
- I have a big corner desk with lots of tabletop space and overhead cabinets.
- I've set up cozy under-cabinet 2700K LED strip lightning.
- I've decorated the space with nice sentimental things.
- I've got a foot-warmer under the desk (since I have chronic ice-cold feet for reasons I don't yet understand).
- I own a (secondhand) Steelcase Leap v1 that I've meticulously adjusted to my body, making sure all of the heights and distances are within typical ergonomic recommendations.
- I have an ergonomic keyboard with a sliding under-desk tray
- I've gotten dual monitors, with one being a modern 1024*1280 monitor to avoid whiplash from an extra-wide double-1080p monitor setup.
Despite all of the above, every time I go to use my setup, I feel a big sense of revulsion and a big urge to just curl up in bed with my laptop.
I've spent a lot of time thinking about why I react this way, and I attribute it to a whole bunch of underlying factors:
- I'm autistic+anxious (ASD/GAD diagnoses), and I was previously diagnosed with ADHD, too.
- I struggle a lot with pain/physical discomfort:
- One of my brain quirks is that I have big sensory sensitivities surrounding my body. I'm hyperaware of any uncomfortable sensations in my body, and pain/discomfort can completely derail my ability to focus and be present in the moment. For example, if I eat too much and feel overfull, the sensation of my stomach pressing against my other internal organs drives me crazy, to the point where I can hardly even watch a show or listen to music. The same goes for when I'm constipated or have an upset stomach. When I get like this, it's like I can't feel any emotions. The discomfort/pain are the only physical sensations I can take in, because they crowd everything else out. I can't feel warmth or happiness or fullness in my heart. All I feel is discomfort.
- My anxiety results in a near-constant state of tension. I'm often very aware of the booming of my heartbeat, or tightness in my chest. I fall into a negative feedback loop, as it makes it very difficult to relax, which further triggers anxiety and tension. (Side note: Beta blockers are the most effective anti-anxiety medications I've ever been prescribed for exactly this reason. They target the physical sensations, and helped me feel an overall sense of calm. I haven't been prescribed them in 7+ years, though, because every new GP/psych I visit automatically discounts them as off-label/not-first-line approaches, even though I've had direct success with them when other approaches have failed. I wish doctors would listen to me. Would weed help?)
- When I get anxious/depressed, I find that my posture suffers a lot. My body sort of curls in on itself, as though it were attempting the fetal position. It takes an exceedingly difficult amount of effort to preserve good posture the more fatigued I get. But, in such a state, I don't have the spoons to exert this effort -- it gets harder and harder until I inevitably curl up in bed.
- Wouldn't you know it, I have chronic pain, too. Multiple times a week, it manifests as this combo of upper-back/shoulder/neck/sinus/behind-the-eyes pain. It typically happens only on one side of my body (though which side it happens on is not consistent). The sinus pain is curious, too: I regularly have a "cold nose" (similar to my cold feet), and breathing in feels icy and sharp, with a tingle like I'm about to sneeze. I find myself reflexively picking or prodding at my nose just to distract from the painful sensations. I often cover my nose with my shirt so that I can breathe in my warm, moist, exhaled breath. It doesn't really warm up my nose, but it provides some in the moment relief.
- You can imagine what this chronic pain does to my ability to feel emotions or focus on tasks... I rely a LOT on Aleve. ;;
- I'm also sensitive to temperature: I really dislike being too cold or too hot. I often change clothes multiple times a day, from shirts to sweaters and back + shorts to sweatpants and back, because I'm constantly adjusting my temperature.
- I also am particular about pressure and textures on my skin. I don't really like having my skin exposed? I like big comfy sweaters and a specific kind of sweatpants that Uniqlo used to sell. I also really adore this specific duvet I got from IKEA, because it's big and fluffy and weighty. It's like a semi-weighted blanket without being so densely concentrated (I have a glass bead weighted blanket I hardly use because of how icky it feels).
- Because of all of this, my ideal state of being is one where my body just kind of... disappears from my consciousness? I strongly wish I could exist without being aware of my physical form, because I'd say at least 90% of my waking hours I'm feeling some form of discomfort or another, and thus 90% of the time any happiness is blocked by the discomfort.
- As far as working on a computer, I find that I'm most productive when I can sink into a state of hyperfocus/flow and attack a task for hours at a time in a single sitting. I'll lose track of time, come out of the state wondering where the day went, yet be insanely productive during that period.
- Naturally, this goes against conventional advice for computer-based WFH, since in this state I don't take stretching breaks, don't adjust my posture, don't rest my eyes, etc. But, I find forced breaks tend to rip me out of my focus, and it takes a lot of self-regulation/spoons to get back on track after a break.
- Despite the terrible ergonomics of hyperfocus, it counterintuitively acts as a needed respite from the pain/discomfort. Being hyperfocused is one of the only states that supersedes the sensory sensitivity I have. I'll often be so focused that I don't notice the state my body is in, which is pretty much my ideal! (Side note: Because of this dynamic, I often lean on rhythm video games as a respite for pain, too. They're easy for me to hyperfocus on, which makes passing the time a lot more bearable for me when I'm in pain.)
- And, the environment most conducive for sparking a state of hyperfocus is my bed, rather than a desk.
- Even with all my adjustments, my desk feels very finicky and dynamic. The chair rolls, the keyboard tray slides, the chair back reclines, my foot warmer slides around. Rarely do I feel anchored, and rarely does everything feel "just right". I can't really find a "locked in" position for hyperfocus, as my body is always interacting with its environment via subtle little tics and adjustments.
- I also find that sitting at a desk leaves me feeling rather exposed? Even with clothes on, I just... don't have enough weight on my legs to feel fully comfortable.
- When I do try to sit at a desk, I may be somewhat comfortable at first, but as time goes on I get more and more uncomfortable. Maybe a tricky task temporarily spikes my anxiety, which causes tension and pain, which makes me focus on the pain, which makes it harder to think clearly about the task at hand, which makes me more anxious, which begins to affect my posture, which makes it harder to properly sit in my ergonomic chair. I'll fidget and shift, and start to lean on one arm. It often escalates to the point where it feels like torture to hold my own body up, because I feel like a ragdoll in my chair.
- My bed, by comparison, doesn't ask any effort of me at all. I'm fully enveloped by the mattress and my pillows, so if I end up in "ragdoll anxiety/depression" mode, I'm supported in exactly the same way I would be if I was in "full spoons" mode. I also get the comfort of my duvet, with fluffy warmth and weight on every part of my body, and very little of me being exposed.
- This means that I can somewhat ignore my body when I'm in my bed. Even if I'm in pain, even if I'm anxious, I don't really have to... DO anything about it? I don't have to physically move my body in a specific way in order to keep hacking away at a task. The pain will still be there, but the hyperfocus state can win out, and I can work away while feeling like my laptop is an extension of my body.
Surely this isn't good for me, right? Surely I should be attacking the root of the problem so that I don't devolve into a ragdoll mess of pain every time I try and use a desk? Surely lying in bed for hours at a time isn't good for my body, right? But, with this multi-layered set of factors, with many of them being inherent anxious/autistic traits, I don't know how to create an environment that's any better for me than my bed is.
What do?
Do you exercise at all? Exercise has been shown to help with a variety of chronic physical and mental issues.
The tricky thing is that at first, it'll feel horrible.
That's because most people overdo it when first starting out. If you start small. Say very light weights and walking and building up it's much better than trying to run a mile if you've never done it. It's very difficult to shock your body into being in better shape is fine never been in good shape and or are really out of shape.
Right, excercise can help extremely with various pains. At first it is difficult even to think about exercising. But week after week you feel the difference and you body thanks you.
Good start would be some physiotherapist visit, for them to see one's posture, find out what are body parts and exercises you should begin with. It may not be the cheapest, I've personally felt that it's worth it.
It sounds like you have multiple things going on, but stretching and exercise helps, in general. I picked up some good exercises by going to a physical therapist.
Ok so. This is long and in my enthusiasm to answer I've probably missed things. I am also autistic, and fully relate to so much of what you're saying. Please forgive if what follows sounds..... aggressive? Know it all? Generally overstepping? It's not intentional.
First: find a doctor (any doctor) and ask for propranolol (or your preferred beta blocker) "for a plane flight" or "stage fright" or "driving" or literally any mundane thing that can cause anxiety. That's what it's usually for AFAIK, and is pretty safe and really shouldn't be hard to get. It helps you, get some. Don't give them info they don't need that might make them question giving you something else/stronger. (I wish I could just send you my extra.... my provider intentionally over-prescribes that one since it's as-needed and ya never know.)
Next: understand that the advice you're taking as gospel is not for you. It's for NTs with normal bodies and needs. Take a week at least in which you do exactly whatever your body tells you you need and observe, without value judgements. You seem to have a good idea already, so start there, and when your brain says "but this is wrong/bad/unhealthy!" tell it (audibly) to shut up. Feels silly at first but it does actually help.
As for the desk, for that week+, you're not allowed to use it. At all, for anything. If your body (not your brain) says you need a chair/desk, figure something else out. Improvise. There is no desk, no fancy set up. You've built in too much pressure there, it's a type of sunk cost fallacy. Cover it with a blanket if it helps, and when the brain argues, tell it to shut up.
Ok, I'm gonna stop there for now, I'll try to remember to check in to see if you have questions/responses (the app I use is in alpha and doesn't notify me of replies).
!!! You're the first other person I've met in the wild who understands my feelings. Propanalol was exactly the one I was prescribed, too. Your reply was really exciting to read -- you're not overstepping or anything, I greatly encourage and appreciate your enthusiasm. :3
It helps that I literally am so scared of driving that I would have panic attacks before driving lessons, with me ultimately bailing before I could get the level above learner's. This may actually be a genuine thing I should reconsider in adulthood, funnily enough.
Just out of curiosity, do you take your propanalol when you begin to feel pain/discomfort/anxiety, or preemptively? And, how often do you tend to take it? I ask as I notice it can be tricky for me to time my Aleve... By the time the pain hits a threshold where I need to do something about it, I often feel reticent to take it because I know I'll need to wait another hour or so for it to kick in... which leads to wallowing/procrastination and unnecessary suffering. So, I then think about preemptively taking it, yet worry about taking it too regularly. And, I'm concerned I'll face the same dilemma with propanalol?
Oh good, I'm so glad this was well received! I'm really having to practice realizing that not everyone wants my advice lol.
Driving is a perfect reason to get an rx, give it a shot! Maybe even give driving another try, when you're ready, because: oh my god it took so long for me to understand how and when to take it preemptively. At first I had to learn to realize the symptoms of moderate anxiety ("high" here being a full-blown panic attack, and "mild" being, apparently, baseline lol). So, ok, learn to take it when I'm out with friends and am suddenly not having fun anymore, and/or notice myself needing to go out for frequent smoke breaks, and/or drinking more than I planned. And then be patient, and trust that it helps. Then I had to train myself to recognize ahead of time that while yes, I love these people and love hanging out with them, it can be a lot, so just take it before we start and have some on hand for the 4 hour mark.
That's just one example tho; there are so many anxiety markers I had to learn (heat/sweat, poor sleep, "am I anxious or just hungry?" and then oh hey, it's really hot but the fan on my legs is apparently freaking me out, put some tights on too, and on and on.....) I don't take the propranolol every time anymore, now that I'm starting to know what my triggers are. Don't need it most days, actually. The key was training my brain to prioritize it as an option I remembered worked (is this object permanence? Emotional permanence? Meat suit permanence? Hooray not being able to meaningfully relate to a state I'm not currently in!). Talking this stuff through with my (awesome, autism-informed) therapist has been helpful too. It's how I realized how much sensory overload was caused by my periods and why I opted for a hysterectomy, which has been the best goddamn thing I have ever done for myself.
Also, what you said about the Aleve... I suddenly understand what's going on in my partner's brain when he's in pain and refuses meds, so thanks :)
Oh shit, just saw your comment about feet-on-the-floor! My brain cannot function with my feet on the floor. Letting myself curl up in weird ways has been so nice and freeing and I cannot recommend it enough. I change positions in small ways occasionally, since moving is actually more important than sitting "correctly." So, sit on left foot, right knee up; cross right leg over left while still sitting on left; cross-legged for a while; sit on both feet; etc.
I don't have one of these, but check it out: https://pipersong.com/
They're expensive, so I wanna Frankenstein something similar out of thrift store chairs. I got a kneeling chair the other day that might come in handy.....
(Sorry for multiple responses; I can't read what you've written without losing my response, so just leaning into the chaos)
Honestly, please don't worry at all about frequency or length of responses!! I'm really enjoying your perspective here. You've given me quite a lot to think about and discuss with my partner, too (in a very good way), so please feel free to infodump as much as you wish! :>
That Pipersong chair is curious but also a little terrifying to me. I'm very lanky and have struggled with joint hypermobility to the point of frequent dislocations as a teen, so sitting cross-legged terrifies me to this day? But I wouldn't mind an excuse to practice my flexibility, either!!
Thank you for sharing all sorts of outside-the-box perspectives and challenging norms. I love to do that, and really hope to find a therapist one day who is good at thinking on that wavelength, too. :3
Just have a separate work bed :)
You jest, but this is something I was genuinely considering! I really like niche, personalized solutions to complex problems, no matter how weird, and this is very much up my alley. I was pondering getting one of those powered beds that can conform to a sitting position or something like that.
It wouldn't be the most practical, but it's curious and interesting.
I was going to suggest this also, not in jest.
I also much prefer working on a comfortable couch or day bed. For me, i kind of hate sitting with my feet planted on the floor: I like to be able to move and stretch my legs out. (Even when in office, i find myself seeking out small stools, or crossing my legs on desk chairs). My back also feels vastly more comfortable when i can recline a bit.
Ive not done any in depth research to make sure Im being properly ergonomic, but I do try to set myself up so i have appropriate back support, a keyboard that suits my hands (i used to get hand/wrist pain, but that stopped with the right keyboard and more arm exercise), and a monitor i can plug into to limit eye strain.
I also try to exercise fairly regularly and try not to stay sitting / lying all day. Lastly, I force myself not to work in my real (sleeping) bed to keep good sleep hygeine.
Im not jesting! I think it’s important to leave your sleep bed, and keep it for sleep, but if you feel comfortable working in a bed just get a work bed.
It may be counterintuitive, but a standing desk did wonders for my bad joints and knee/ankle pain. The body really is a use-it-or-lose-it type of machine.
This was going to be my suggestion. Sitting in general is horrible on the body. It puts many of your joints and muscles in positions they aren't strong in. The best fix is to be upright and moving. Yes it does mess with hyperfocus. I will sit when I really need to dig in, but I try to limit that to only an hour or two a day. If I must work a bit slower the rest of the day, oh well. My health isn't worth making stocks go up.
I'm curious if you have ever been evaluated for POTS (e.g. hyperadrenergic POTS) or other dysautonomic diseases. Some of the symptoms you describe are POTS-like (of course not all, but it's possible POTS-like diseases could be a component). For example, the following symptoms are very POTS / dysautonomia-like:
You can do a first pass check for POTS by looking at your heart rate in lying down vs in a standing position. If it seems possible, may be worthwhile looking into properly.
What sort of position are you in when you're in bed? Why do you feel it's bad for you? From your post, all the evidence points to it being better for you: for your chronic pain, for your sensory issues, and for your mental health. Those are all big parts of your life and if you can (at least partially) manage them with the simple solution of working from bed, then I encourage you to embrace it. You have a long list of reasons why working in bed is what works best for you, but the only reason you can think of not to do it is because you "feel" like you shouldn't. Sitting for hours a day isn't actually very good for you; that's why there was a whole trend some years ago with standing desks and treadmill desks. I've never heard (though I'm far from an expert) that lying for hours is worse than sitting; the only reason I would expect it isn't recommended is because it's healthier to be regularly active, but that's not something everyone can do.
I should disclaim that I spend all day in bed myself. I don't have your host of issues, but it's mostly due to mental health. I've set things up with my laptop so that I'm not cramping myself to use it in strange positions. I have a bed wedge that keeps me semi-reclined, a lap desk that angles upward for ease of typing and to see the screen, and a trackball that I set on the bed next to me so I can use the mouse in a relaxed position. I have an issue with pain in my lower back sometimes, and I've found that this position is the least likely to cause a flare-up (which sitting up would frequently do). To me that says I'm being as gentle on my body as possible. Again, I'm no expert, but I'm sharing what I've found works for me personally.
The desktop setup sounds nice so it'd be a shame if you couldn't use it, but is there anything actually bad for you about using the bed? It sounds like your most functional option.
I've never had a medical professional in my life, even a specialist, who seemed likely to work with me on any issue in terms as detailed as you have used here.
It sounds like the bed works fine, but my concern is that it would harm your sleep schedule. If you associate your bed with things other than sleep, it can be harder to fall asleep. It's also good to have some defined "office space" in general to help with focus.
That aside, I'm in a similar boat. I have a pretty awesome desktop and a GREAT chair, but I mostly use my laptop on my couch. I just don't like sitting at a proper 90 degrees, especially after reading an article mentioning human spines aren't designed to sit like that.
So maybe you can look into using an actual recliner or couch? Something that can let you change position however you want, but isn't where you sleep.
I found some of this behavior comes from fear of dropping things, falling over, loss of motor control. Especially over age 40 with autism.
I don't say this in jest. But maybe you could do with a separate work bed? Something that could work with posture. Maybe if you didn't force the idea of a desk, you wouldn't have to stress out about that. You already have plenty to worry about. Sometimes just allowing yourself the permission to accept that what you need now is a bed, helps. Maybe rather than a desk, find ways to make the bed better for your posture. You can transition over time but right now, a bed is fine.
But I however suggest this half jokingly. Have you seen this gaming bed? Sound like you need this! More pictures here!
In terms of your lap not feeling heavy when you sit, would a lap weighted blanket work? I have anxiety too and I had this issue where I'd wake up because I was too light. I got myself a lap weighted blanket to puy on my chest and it helped.
Other than that, I don't really have anything to say other than It sucks having so much to care for mentally. I've got anxiety and depression too and am currently in pain. And sometimes I worry people will say I'm weak or to stop being paranoid or don't let the pain run you. But they don't understand. Yes my pain gets worse when I'm panicked, but the panicked state is not something easily controlled and that's where meds help.
It's not exactly the same as yours, but I'm sure it's hard to get people to understand your issues with sensation and pain. I empathise.
Edit: Also! I've done the thing where I wrote down my issues and gave it to the doctor to read. I did that to several doctors and all of them didn't want to read it! They ended up telling me to tell them instead. One of them said it was too long, and what I wrote was shorter than yours.
So a TL;DR version might help when you see doctors.
I really don't know if it's just a region thing and the doctors here just don't like reading. Maybe your doctors won't mind it.
This is really funny! Another user suggested something similar, and I immediately assumed it was in jest (my mistake!), but still adored the idea. Same thoughts, same words! (Jest jest jest jest jest.)
Still, though, I really like the extra details you've provided. That gaming bed is... really well suited to what I need, honestly? Admittedly I feel bashful, because the target market feels sort of... NEET-ish, what with the cup noodles and energy drinks? I would be very ashamed to show houseguests such a setup, and would need a separate room to hide it away in. I would want to maybe DIY a clone of it, and try to make it feel less "black metal and carbon fibre"-ish, and instead more organic? Plants and wood and cute things. But... the general idea feels really really nice to me, especially if I can find a way to merge ergonomics (head tilt, arm position, etc.) and comfort (blankets, bedding, etc.)
Lots to think about! :3
Yeah! It's kind of why I mentioned it half jokingly. Because I think the general idea works. But the whole black and cup noodles aesthetic is probably not something you'd want for yourself.
But yeah DIY with wood and plants sounds like a great idea. Especially mental health wise. I think the hardest to get is the bed frame. Everything else is just tables and shelves really.
The important thing is that it's separate from your sleeping bed. So your body knows what is for work and what is for sleep.
Serious question: have you considered getting a desktop? That way, you aren’t able to actually use the computer in bed.
The worst reason for doing things is because everybody tells you to do it.
If working at a desk causes you pain and suffering but working some other way works for you, that is the way it is. Even if you find a desk situation that works for you sometimes, you will probably still want to spend time in some other environment.
Perfect may be the enemy of good here. It sounds like you've set up a "perfect" option with the desk - with a chair for perfect posture and good lighting and all that. But since its perfect - its also far enough away from what feels natural and it sounds like you won't use it.
So I'd try to meet in the middle and focus on the big 1-2 things you're worried about with working in bed. So perhaps you want to have better back posture to prevent future injuries, and maybe also want to associate your bed with only sleeping so you can prevent sleep issues. In that case, a deep comfy recliner (think something like a la-z-boy recliner) might be a good compromise. In theory it should be fairly similar in comfort to your bed (especially with the legrest up), but with some added lumbar support. Ideally it has enough room to move around to get comfortable and curl up a bit with your laptop.
So for me, I absolutely cannot work or concentrate in a chair that rolls or with a foot rest that moves. I personally have an old fashioned small wooden desk that had been my grandfather's and a simple chair to which I have added a soft cushion to sit on. It is the right height and my feet stay on the floor.
I also understand and somewhat share your desire to be wrapped up. I work from home now and I frequently work in a fuzzy bathrobe on top of other comfortable clothing. It is comforting.
I want to echo what other people have said. Figure out what you need without judging yourself and provide that to yourself. If that is a bed, or a comfy old fashioned recliner with a lap desk, then do that. Give yourself what you need.
What about a comfy recliner that you could lock from swiveling (might take some finangling), combined with a "desk/work blanket"?
I don't have any solutions, because this sounds like something I could have written about myself.
I'm also a chronic pain patient with ADHD (not ASD), and GAD. My body works best in certain positions and I'm hyperaware of any sort of discomfort due to heightened physical sensitivities.
We bought an adjustable base bed last year and a rolling "bed table" that I can use. I was using both for almost a year, and then at some point this summer, my chronic pain flared for a month and I just decided I'm not going to lift the bed anymore and stopped using the rolling table I use as well. I haven't noticed much decline from that point, but I do notice my neck is more tight than it was before my flare.
This is the table I use and currently, my sewing machine lives on it, instead of having it as a free work station. I'm thinking of getting another table that's similar, but longer so I can have it further tucked in and not turn at the waist to type.