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?

vivarium
2023-09-16T18:09:54Z

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:

1. I'm autistic+anxious (ASD/GAD diagnoses), and I was previously diagnosed with ADHD, too.

2. 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.

3. 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.)

4. 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?

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