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It's Important To "Nest" When You Have ME/CFS

When you have moderate to severe ME/CFS, your house or your bedroom becomes your whole world. Transform the space in this tiny world so that it provides you with the maximum amount of comfort and the least amount of energy expenditure. This is most important for severe ME/CFS patients confined to a bed. Keep things you need, are helpful, save you energy, or are comforting, in reach all around you.

And furthermore, try to keep these things in the same exact place all the time. This is important because if something is always in the same place, you can build muscle memory to reach for it and pick it up and use it, and it then requires much less energy to use. For example, I have a piece of tape on the carpet to the right of my bed marking where my urinals should be put by my caregivers, so that they are always in the same place. When I need to pee, I don’t even need to look to pick one up, or think about it at all, my arm just moves and grabs. I try to do the same with everything I use regularly so that everything is a "reach and grab" even in the dark, and not a "look, find, coordinate reaching and picking up properly" movement, which uses much more mental energy. This may seem trivial, but it actually saves a lot of energy, and if you have Very Severe ME/CFS, your mind might not have enough energy to allow you to move freely so this can be the difference between being able to do something and not.

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This is how I have my bed area setup:

I have a grabber arm resting on my headboard right by my head and easily within reach so I can reach things around my room that I can’t reach with my hands, most often when something falls off my bed. I have my earmuffs on a hanger right next to my head on my headboard. Next to that I have a laser pointer attached with one of those spring loaded wires that janitors use for keys, so I can just grab it and pull and it comes out and I can point at anything in my room I’m trying to communicate about or need help with, and when I let it go it just retracts back to my headboard right by my head.

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I have a nightstand that is covered in a stack of paper towels that my caregivers tear apart and fold in half for me so that i don’t have to mess with a roll, but can just grab what I need and use them easily. Next to that I have a basket with a bottle of isopropyl alcohol for cleaning and sanitizing, a bottle of hand sanitizer, a bottle of hydrogen peroxide, and large syringes with meds that I have to inject into my jtube once a day. Next to that I have my A/C outlet remote that allows me to turn on or off any of the lights in my room with the push of a button, or any other appliance that has a physical on/off button like a fan in my bathroom window to blow fresh air in or keep smells from entering my room from the kitchen. Next to that I have a stack of backup eye drops because my main pile sometimes runs out and it’s really painful not to have eyedrops. Next to that I have alcohol wipes and a couple clothes pins I use as cleaning tools to clean my jtube when I inject my med syringes.

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Next to the nightstand I have a cooler that holds 2 gallon size ziplock bags of ice that I put on my stomach to protect my stomach from getting permanently hurt when my caregiver injects 5 large syringes full of meds into my jtube. The cooler keeps the ice cold so that my caregiver can bring it in anytime during the day and they will still be frozen when I do meds.

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On the left side of my bed I have a little bowl for trash/boogers/whatever. And a pile of single use preservative-free eye drops that are torn apart and opened by my caregiver everyday and lined up in a neat pile so I can just grab one and put a drop in my eye without even thinking. Next to that I have a tupperware bin for keeping my ipod and 2 iphones (I have an older one for texting and a newer one for everything else because being constantly connected to text messages causes me stress so I use 2 iPhones to separate texts from the rest of the things I do with my phone, which are many when you’re confined to a bed because it is your only connection to the world). And also on my left there is a shelf attached to the wall full of all my audio headphone equipment and the headphones that I work on modifying to sound better in my spare time and hope to sell if my health improves (www.rhythmdevilsaudio.com). I have a nice DAC (Digital to Analog Converter), and several headphone amplifiers for different kinds of headphones. This is something I will discuss later, but it’s just something I can do from bed that brings me simple joy, which can be hard to find in our lives. And i also have a metal rack to hold all my headphones and external hard drives that hold my photographs and backups.

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Hanging off of this rack is a camera bag that I cut the cover/lid off so i can just put the camera in and take it out quickly and freely without any zippers. Next to this is a basket full of rubber gloves so I can do gross things without needing to wash my hands, or apply lotion or creams (for example I have to apply lanolin to my stomach before putting ice on my stomach to avoid ice rashes and it’s very hard to clean off, gloves make it faster and easier). Next to that I have a bin for random things like camera accessories and batteries.

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I have a plastic cup packed with baby wipes so I can easily use them without fiddling with a lid. I found that if they are packed into a cup, they stay wet for a couple days and it makes it much easier for me to use them. My caregiver keeps it full and replaces them all every few days.

I also have a clever system for triggering a wireless doorbell to call for help or allow someone to come down the hall to my room to come in and help me with something. I am unable to push the remote button with my hand or fingers, it triggers a stress response. I’m not sure why, but it’s something about the click of the button and the instant ringing of the bell and all that action happening so fast. When I was at my most severe I could not push buttons of any kind, and some PTSD from that remains and keeps me sensitive to it even though I’m more capable now. When I was more severe than I am now I figured out a way for me to push the button on this bell with my elbow, in a way that I can’t feel the click. I put the button on the bed right where my elbow can reach it easily, and then cover it with a folded up cloth towel so that I can just push on the towel with my elbow and it pushes the button without me being able to feel the button press. The combination of using my elbow and not feeling the click of the button removes me from the process enough to be able to ring the bell. But even then, I can only ring it once. If it is not heard I can’t ring it again due to my stress response. It would cause a crash. This happens sometimes and always creates a mess of me waiting for my caregiver to come down and her waiting for me to ring the bell that they did not hear or did not work properly and did not ring..

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I keep a headlamp on my bed on my left in front of the shelves so I can always get light on something quickly and easyily. And I have like 6 charging cords that come in under the shelf for charging all my devices and batteries and camera gadgets and things. (yes I know the EMF’s are probably killing me)

I also keep a remote to my air conditioner/heater right on my bed in front of the shelf because I’m constantly needing to change the temperature in my room depending on whether or not I have ice on my stomach, or whether I’ve got the food pump running which really heats my whole body up. But without the food pump running I get cold easily. I often go between 71F in here to 79F in my room depending on the food pump and my body.

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All of these are things I use regularly and I keep in the same place around me so that I build muscle memory for all of them and can just "reach and grab" even with my eyes closed. All of my daily tasks are so routine I hardly have to think at all to get them done. It’s just my arms and hands doing all the work. My mind can be floating in a distant land somewhere.

So nest! Create a comfortable, easy, convenient world around you with items that are always in the same place so you use less energy on menial routine tasks. It will make your life much easier. And get creative about how to make things doable for you with your limitations like i did with the towel on the bell. There are often ways to get around our sensitivities and there are all kinds of gadgets for sale in the world today that can be appropriated for our use.

If you want to learn more about some of the gadgets I have found useful to me and discussed in this post please read my blog post "Technology To Improve Quality Of Life" which has descriptions and links to buy all the gadgets I use to help make my life easier.

Love,
Whitney

Donate to ME/CFS research at the Open Medicine Foundation to help stop the suffering of millions and end ME/CFS.








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