Environmental Adaptation: EDS, Pain, and Auroras.

I have been thinking a lot about the side effects of being stuck in bed, in the house, and limited activity outside. This is not new, though it is more acute with the recent surgery and my body being slow to get over it. My nature is to push and rush, and I am trying a new route. Not forcing myself to deal with extra pain by rushing my body. Yet I am not depressed, which is something that surprises me when it creeps into my subconscious. I am happy. So what has lead to this?

First and foremost proper pain management. I see a lot of depression tied in with hurting. I still have days, like today, when I cannot move because the agony in my body is so bad that not even morphine helps. Which is shitty. It has been raining and so I have been writhing. Pain management for me entails the way my bed is made, there is a lot of cushion before the pressure pad, which softens the mattress. There are pillows to support my joints. The bed adjusts and positions me so I can actually get comfortable. I sleep in this bed, not a few disjointed hours with four when I give up. Six hours with two interruptions. That sounds like terrible sleep to most people but it is the best sleep of my life. I was born in pain, so the relief i find now has changed a great deal of my experience.

Second is environment. I have access to a beautiful light show, this is recent but it is not my first attempt at environmental tuning. My crystal lotus with the LEDs that rotate color through projects an aurora borealis on my cieling. I adjusted how much light and how much of the room is filled by choosing where this sets. The lampshade catches eighty percent of the light so i can leave it going while I sleep. I sometimes turn off the lights, remove my glasses and just watch the colors. It is then when I let my mind run free into a story. Not always the one of my novel, sometimes it is just a land of color and beauty. Sometimes I am a butterfly transitioning from catepillar. SOmetimes I go on a journey through the Celtic Wheel like many legends of Arther have. I have been hunting for a non noisy home planetarium machine to buy, once I find the right one via research it will be something to save for. This combined with my aurora can create a new environment. The high end ones, which is what I will strive for, allow you to change what kind of star field and view you project. I have a plastic moon, which is not sufficient quality to recommend as this is my third and it too has broken, that rotates through the moon cycle. I can feel outside without going outside. This means setting up access to light controls via my remote plugs. I control my internet to reset my modem, my bedroom light, and a few other things which need on and off from my bed. I tried a few brands before finding one that held up to my abuse (dropping, oh so much dropping) with the Etekcity brand. A bit of velcro and it is stuck to my wall by my bed, where I can comfortably reach it and poke the switch.

Third is entertainment. I only have a tablet and a desktop. I am on bedrest. SO my carer and I put my monitor on a hospital bed table, set up the tablet beside that and the tower on the floor. This required moving my uninterrupted powersupply, ditching the monitor that was bigger and also dying anyway, no external hard drives, a wireless trackball and keyboard… annnd it works. It works well enough that I can watch movies, write, and function as I would at my desk. This cuts down on feeling trapped. I can watch DVDs, stream hulu, netflix or other services. I can run facebook. This is not flawless as my PC has no wifi built in, not an issue for the living room… the old wifi dongle I have is over ten yaers old and cuts out a lot. This also isn’t as big a deal except for facebook anyway. I turn off the net to write, I mostly run hulu and netflix on my tablet. A laptop is more ideal but disability is often tied in to poverty so I must adapt with what I  have.

Fourth is food. I eat in bed now, which is a terrible thing to imagine for most people. I have a pillow for some dishes, a tray for others and still use the hospital table as there IS enough room for a monitor, speakers, tablet and medications on thatthing and my bowls. My bowls andplates are hybrids of each other, creating the right surface. Using a bowl cuts on spillage in bed too. Sometimes there are accidents, but that is true everywhere.

I have built a modular world inside my home, where sensory friendly moments dominate the invasive terrible outside world’s loud and painful ones. The lighting, the entertainment and even the music is tailored to keep me happy. The internet is of course a huge reason this works as is my perpetual creation with in my mindspace. I am dependant on my carer for this to work but it is still a matter of personal need.

I still have pain. I still must log it, track it, and treat it. I still have moments of frustration at my limitations. I want to shower but it is too dangerous for me to do so right now. Its been over a week of just sponge baths. I lament for it. I also know that it is better to wait. I am still clean, I just want to get a better type of clean. I still struggle to eat. I still must move to go to the restroom. Sometimes I still get sick and must stumble forth to find a place to vomit. There is no perfect setting or world but I can give myself beauty, enjoyment and I suspect most people can manage this too. I needed help to perfect what I wanted to do but this concept is not newly stumbled upon. For over ten years I have refused to live in an environment that hurts me. My system is always being tweaked as it is imperfect, but it gives me what I need to create and function.

This post is dedicated to people in pain, people with sorrow, people who have no idea what to do to make it better. It is dedicated to people learning how to heal. People like me. People like you. We must adapt to survive but not all adaptations are born out of logic. It isn’t logical to realize changing your walls to stars and trees is helpful. If it was, this would be a built in feature of every home. I am simply sharing my own adaptations. I learn from others who do the same.

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