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My Chronic Illness Toolkit
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items I was diagnosed with Myalgic Encephalomyelitis (also known as ME/CFS) in 1990 and have been bed bound since 2017. There are no effective treatments, so the best we can do is to manage symptoms. These are the things that either make me feel better or ...
Sections
9
Pain management
Temperature dysregulation
Comfort
Photosensitivity
Convenience
Mobility
Pain management
Constant pain is a reality for people with ME/CFS and other conditions like fibromyalgia, but long-term use of painkillers isn't great. These items are my must-haves for managing chronic pain. I always have one I'm using and a spare.
Years ago, someone recommended an electric blanket for muscle pain and I wish I could remember who it was because I'd like to send them a gift. Mine is on 24/7/365 (I'm bed bound) and I can't live without it. Within half an hour of a power outage, my...
Thermylux Twin Electric Mattress Pad 39x75
While sitting up in bed, I need heat on my back for muscle pain so a heating pad is essential for me. This specific one is great because it has 9 heat levels and a timer for up to 4 hours (most auto shutoff after 90 minutes max). Mine last around 2 y...
Extra Large 17x33 Heating Pad for Back Pain
Temperature dysregulation
Constant overheating is a common symptom and something I experience 24/7/365. Even with an air conditioner, I have to have a fan on me at all times. If I leave the house, I have stuff I take with me to keep cool.
Temperature dysregulation means I overheat regardless of the ambient temp, so I have to have a fan on me 24/7/365. A remote control and Alexa compatibility make it easy to operate form your bed. I love that It has 8 speeds and it's quiet.
Dreo Smart 120°+105° Oscillating Standing Fan
Temperature dysregulation means I'm constantly overheating. These solid shell ice packs applied to the back of my neck and head help cool me down. The hard shell type is better than the soft packs, which usually end up leaking.
Ice Block Refreezable Ice Pack L - Embark™️
When a friend recommended a neck fan for my overheating issue, I wasn't convinced it would help. They're pretty cheap so I decided to try one and was surprised at how well they work. I use it when I have to leave the house (and my fan). These are bet...
IJoy Cool Down Portable Neck Fan - White
These fine mist spray bottles are a great way to keep cool, especially when combined with a fan or neck fan. If it's especially hot, I add a few ice sticks to the water.
10 OZ Ultra Fine Mist Spray Bottles for Hair & Plants
I add ice sticks to my spray bottle to keep the water cool when it's very hot. This shape fits in pretty much any bottle.
Meadow Lane Ice Stick Tray, Teal Blue
Comfort
Being bed bound makes comfort especially important, so I'm sharing my top picks that make me more comfortable, like an adjustable bed and the things you need to prevent common issues with adjustable bed.
Being bedbound, a comfortable, adjustable bed is a must. The zero gravity setting is amazing for pain - you feel like you're floating. Being able to raise your legs is also useful if you have POTS or orthostatic intolerance. It also has a massage fea...
Wayfair Sleep™ 15" Massaging Zero Gravity Adjustable Bed with Wireless Remote & Reviews | Wayfair
This adjustable bed includes a memory foam mattress, which I find the most comfortable.
Amada Adjustable Bed Frame & 10" Gel Foam Mattress Set
A memory foam mattress is great for chronic pain. The support on tis one is medium firm, but you feel like you're sinking into it a little. Add a mattress topper and it's like sleeping on a cloud.
HEIM NEST 10" Twin Mattress Gel Memory Foam
This massage chair is on my wish list for 2026. With a full body massage, heat for your back and calves, a zero gravity setting, and a touchscreen controller with Bluetooth speakers, it's definitely a luxury item. But comfort is now my priority so I ...
Zero Gravity Full Body Massage Chair, 14 Points
Soft 100% organic cotton pajamas available in small, medium or large. Colors: black, white, powder and grey.
Women’s Cotton Pajama Set – Soft Long Sleeve Loungewear, Cozy Fall Sleepwear with Pants
These fitted sheets, available in a variety of colors, feature elastic all the way around the sheet. On their own, they will help stop the sheet from popping off the top of the mattress when you have the back of an adjustable bed raised, but they won...
California Design Den Twin Fitted Sheet 400TC
When I got my adjustable bed, the fitted sheets popping off the top of my mattress when I had the back raised drove me insane. I tried elastic straps, but putting them on was hard work. These are so easy to use and get great reviews. I highly recomme...
ZlumberLock Secure Sheet Holder with Straps
If you put a mattress topper on top of your mattress, it's likely going to slide around, especially if you have an adjustable bed. Putting one of these between your mattress and topper stops it from sliding.
Foboull Silicone Mattress Slide Stopper, 5X Anti-Slip Pad, Queen
Photosensitivity
Artificial light makes me nauseous and too much sunlight is a strain. Now that I'm in bed all day, blackout curtains are essential (I also have blinds behind my blackout curtains so I can open the curtains and let a little light in if I have visitors...
When I was working in an office and developed photosensitivity, I couldn't spend more than half an hour under the lights before feeling nauseous. I came across this webpage with info on NoIR sunglasses and got myself a few pairs. They really work! If...Independent Living and ordering from them, or just save the photos and details to send to NoIR so they know what you want. The MPKB page gives you the details of which lenses you need.
NoIR sunglasses (MPKB)
These 100% blackout curtains look like linen and are available in some lovely colors (oatmeal is my favorite). Best part is they include four hanging options and 20 clip rings. Even better, they're machine washable and iron safe (they can arrive pret...
Wade Logan® Birglinde Faux Linen Textured Thermal 100% Blackout Curtains for Bedroom Living Room Rod Pocket/Ring Clips & Reviews | Wayfair
Being photosensitive, blackout curtains/blinds make a huge difference. Not only do they block light, they also block sound. Smart blinds you can operate by voice or phone are next level. You can schedule when they should open and/or close and how muc...
Kincmo Motorized Blackout Roller Shades
Convenience
Making life a little easier where you can is so important when you have a chronic illness. These are the things that I've found so helpful in daily life. They either save time or energy for me.
I have one of these draped over the side of my bed frame so I have easy access to my remotes (TV, air conditioner and adjustable bed). They're available in black and brown and in two different widths.
Teniux Armrest Organizer with 5 Pockets Black
Being bed bound, an overbed table for my laptop, medications, water flask, etc. is a must. It's also great for meals. Essential features: adjustable height and width (so it fits over any size bed), a backboard so nothing falls off, wheels so you can ...
Adjustable Laptop Bed Table, Rolling Desk, 120cm
Another option for an overbed dining table or desk that has storage, which is great for cutlery, spices, etc. It's heigh adjustable and has wheels, plus it has USB ports for charging your phone and a plug point for your laptop.
17 Stories Height Adjustable C Table with USB Port and Wheels & Reviews | Wayfair
If you only need a table for eating, this one has wheels so you can move it easily from your bed and the height is adjustable.
FLEXISPOT H7 Adjustable Overbed Table w/Wheels
I'm light sensitive so don't often switch lights on, but sometimes I need just a bit of light. Smart bulbs are great because you can switch them on and off using your voice or your phone. These are also dimmable (I set mine to 5%) and you can change ...
Philips Hue 60W A19 LED Color Bulb - 1 Pack
One thing I'm focused on at the moment is making daily living as easy as possible. Sweeping and mopping floors takes a lot of energy, so a robot that does it for me at the top of my wish list. This one has 241 5-star reviews on Amazon with customers ...
Tikom Robot Vacuum & Mop, 6000Pa, Self-Emptying
A large thermal flask means I can have cold water or my electrolyte drink in bed without having to go back and forth to the fridge multiple times a day.
CIVAGO 40oz Insulated Water Bottle w/ 3 Lids
A smart kettle saves me a little energy as I can switch the kettle on from my bed using the phone app or my voice. You can also set the temperature - from lukewarm to scalding hot. It saves me a trip to and from the kitchen, which makes getting a cup...
COSORI Electric Gooseneck Kettle Bluetooth
Mobility
I've been using an electric wheelchair for a few years now, and I wish I hadn't hesitated to get one. It seems to be a common experience with people with a severe chronic illness - maybe there's a stigma or maybe it's not wanting to admit how ill you...
I hesitated so long before getting a wheelchair. I guess it felt a little like giving up, like I was accepting that I wouldn't be getting better. But I regret not getting one sooner. This isn't the model I have, but it's better because it's lightweig...
Foldable Lightweight Electric Wheelchair 36LBS, 15 Miles Range, 350LBS Max, 500W Motor, LED Light
A waterproof wheelchair poncho is recommended, especially if you have an electric wheelchair.
Bramble Waterproof Wheelchair Poncho Cover
This cup and phone holder is great for wheelchairs. Just don't screw it on too tightly when you attach it (I broke my first one).
Stroller Cup Holder, Baby Cups, Large Phone
One of the key recommendations if you have ME is pacing, but I've always found that difficult. Getting this heart rate monitor showed me how often I was exceeding my energy envelope. It's an armband that you wear all day and it alerts you if your hea...
Wahoo TICKR FIT Heart Rate Armband BT ANT+
I pity the individual who tries to question me for using a wheelchair when I can walk, but I know it's something that happens. I know many people with ME get anxious when they think about using a wheelchair in public spaces where they will need to ge...
Yes I Can Walk & I Need A Wheelchair Disability Button For Ambulatory Wheelchair Users
Letting people know you're an ambulatory wheelchair user is great for creating awareness out in the world and helping you feel less anxious about being confronted by someone ignorant. This t-shirt, printed on the front and back, says you can walk and...
I Can Walk & I Need A Wheelchair Ambulatory Wheelchair User Awareness T-Shirt
Most people don't know that some people can walk but still need a wheelchair, and some of those people somehow feel entitled to confront people. Sadly, that makes some ambulatory wheelchair users anxious about using their wheelchair in public spaces ...
I Can Walk Ambulatory Wheelchair User Awareness Bumper Sticker
Hygiene
Having limited energy can make hygiene difficult. These are the things that help me so much.
When I ended up bed bound 8 years ago, I had to shave my head because grooming required more energy than I had. At the time, I had a more expensive brand, but recently got this one and it's actually better. Despite the low price, it feels very sturdy...
CIICII Hair Clippers for Men,6 in1 Cordless T blade trimmer, Professional Multifunction barber stuff, Hair clippers-Gift Sets for Men
Getting out of the bath isn't possible for me anymore, so I put this chair in my corner bath or in the shower, saving me a lot of energy.
Medline Deluxe Aluminum Shower Chair with Back | Carewell
Bathing takes a lot of energy so these wipes come in handy when you don't have the energy to bath or shower. What's great is you can heat them up in the microwave. I'd recommend you get someone to wipe you down while you lie on a towel on your bed to...
Stryker Ultra-Soft Hypoallergenic Washcloths
Pet care
I adore my two dogs, who make my life in my bed so much better every day. But taking care of them can sometimes be hard when your energy is limited. Feeding my boys has at times been especially difficult, as is playing with them. But there are option...
Sometimes getting up to feed your cat or dog takes more energy than you have. An automatic feeder that dispenses a specified amount of kibble at times you set via your phone is an easy way to make sure your pets eat on time even if you're too weak to...
PETULTRA Automatic Programmable Desiccant Dispenser
Sadly I don't have the energy to play with my boy, and I feel guilty that he doesn't get enough stimulation and exercise. That's why I got this ball launcher to keep him busy and active. I recommend training your dog to load the balls him/herself - i...
Automatic Dog Ball Launcher, Adjustable 20-45FT
Just nice to have
Some of the things that make life a bit easier or make me feel better aren't essentials, but just nice to have.
I had to shave my head when I became bed bound and I missed my hair, so I invested in a wig. I fell in love with this one, which has a lace front, so it looks like real hair around the hairline. I love the modern style. It's synthetic but can be heat styled. My tip if you're new to wigs: get one with darker roots because it looks natural. I got this one in Palm Springs Blonde, which has dark roots and looks great. The cap is great quality so it's comfortable.
Ignite (Exclusive) | Lace Front Synthetic Wig by Jon Renau