Working From Bed — TeeSpoonie
I often see stories about working remotely and/or working from bed written by non-disabled people and the themes are typically the same. The work is framed as “too easy” and “lazy” regardless of how much they enjoy it or how beneficial it is to them.
I’m exhausted with that narrative.
When you’re disabled and chronically ill, working remotely doesn’t change that and even if it’s more accessible, our symptoms can still be so unbearable that we can’t even do the remote work that we do. Remote work, much like office work or in-person work is still work. It isn’t suddenly less than because it isn’t being done in a separate workplace.
When the pandemic first started, I was working in a fast-food restaurant that I’d been working in for a year and a half already. At the time, there were mixed messages in the media about the severity of things so we weren’t exactly sure how things were going to change going forwards regarding the functionality of the store.
Over time, as the severity started setting in, I saw jobs belonging to friends and family offering work at home options to keep their employees safe. For me, this wasn’t at all an option. I mean, I worked in a restaurant, and despite how much I wished they’d close the store and pay us to stay home, they wouldn’t.
It was seven months into the pandemic before I was able to work from home. For my health and safety, I quit that job because my body couldn’t handle it anymore and there were too many close calls with covid for comfort while in a restaurant that couldn’t even enforce masks.
I started working remotely for a call center and for the first couple of months, things were much easier for me to handle, I wasn’t standing and moving all day and instead, I sat at my desk with my two cats around me and had easy access to snacks at all times. It was what I, as a chronically ill disabled person had been dreaming for since the pandemic began.
But then came a flare-up.
This was the worst flare-up I’d experienced since I first started showing symptoms of M.E. three years ago. It started the week of thanksgiving, my fatigue had been higher than normal and I seemed to be fighting colds back to back. It began to become harder to get out of bed and keep myself fed and hydrated, let alone get to my desk to work.
I began missing days, coming to work late or leaving early. I often see non-disabled people talking about how easy working from home is and how there’s “no excuse to be late/absent” when you don’t have to leave your house. But as a disabled person, getting to my desk when you’re too weak and ill to get out of bed felt just as exhausting and impossible as when I used to leave the house for work and take public transport.
My work was slipping along with my health.
My previous job worked on a point system and I was half a point away from reaching the maximum amount I was allotted in a year and I had gotten 3/4ths of them in December alone.
After multiple breakdowns, l decided to quit for my health again. I’d long since surpassed the “unable to work” stage of my disability but unfortunately, capitalism doesn’t care and my bills were going to come regardless. I didn’t have the time or energy to apply and wait for disability nor did I have a family who could support me, paying my bills in the meantime.
That’s the crux of trying to get disability support from the government. The goal is to make it so hard that you give up or die before you can get the help you need and for the second time, I had to give up on it.
I didn’t know what the future held for me. I was terrified and the stress was making my flare-up worse.
After tons of rejection emails, I was able to find a temporary remote job that I’m able to do so from my bed for the first time and it’s been a game-changer for me. I don’t know what I’ll do after my contract ends since there’s no possibility to stay on, but this has been the first time since becoming disabled that I’m able to work comfortably.
My workdays look like me sitting in bed, supported by multiple pillows under my legs and behind my back with my bamboo lap table over my legs. I keep my medication, a box of crackers, and my Switch Lite nearby. I have a mini-fridge that holds my water bottles, supplemental shakes, and green tea so I can stay hydrated without dealing with the fact that I can’t get out of my room. My cats cuddle up beside or against me and I get to wrap myself up in my comfort blanket.
Even when I’m too ill to get out of bed, I can still open my laptop to participate in my workday.
It isn’t completely easy.
As a chronic migraine sufferer, most days of the month I’m dealing with a migraine. I typically have severe light and sound sensitivity that increases how painful my migraines are. They can get so bad I can’t open my eyes and look at any light whatsoever. These are the days where I’m absent from work because no matter how much difficulty has been alleviated by not having to leave my bed when I can’t, my migraines still affect what I can look at whether it be as little as the low light of my bedroom or as much as the sunlight from the windows and my laptop backlight. My M.E. is becoming more severe as time goes on and there have been times were just sitting up in bed is impossible and I don’t have the spoons or mental energy to expend doing my job.
In the year that I’d been job hunting since the pandemic began, I’d been searching relentlessly for remote jobs, especially ones I could do from bed. I’m immensely thankful for being able to do this job but the difficulty still exists.
Originally published at https://www.teespoonie.com on February 12, 2021.
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