When living with a chronic illness and disability, everyday life can be a struggle. Sometimes just getting out of bed in the morning can feel like running a marathon in high heels. That’s why it’s important for us Spoonies and Warriors to have a Toolbox or Care Kit. Your toolbox doesn’t have to be in an actual box (though I do recommend keeping some things by your bed for those bad pain days) nor does it have to look like mine. Everyone’s chronic illness journey is different therefore everyone’s coping skills will be unique. Below I’ll share some of what’s in my toolbox in the hopes that it gives you inspiration and ideas for your own survival set.
This seems like an obvious must, but I cannot tell you how many times I’ve been caught by a flare without my meds. For my own sanity and ease of access, I keep a bottle of ibuprofen by my bed, in my medicine cabinet, and a small portable case in my purse. I also like to keep different kinds of pain killers around for different kinds of pain- acetaminophen and ibuprofen are not the same thing and each interacts with my prescription meds differently.
Heating Pad and Ice Pack
When pain strikes and I’m waiting for the meds to kick in, nothing soothes like cold and heat therapy. After a recent experience with my electric heating pad literally melting into the cover, and the scars I have from accidentally falling asleep with it on, I’ve switched to microwavable packs. There are pros and cons here, the most difficult of which being that if I’m dealing with a particularly bad flare-up, any sort of movement can be agony, so getting up and microwaving my pack can be tricky. However, once I’ve microwaved it, it stays hot for at least 30min, and I can fall asleep without fear of more accidental tattoos.
For the cold packs I have a variety of sizes and shapes (I highly recommend the eye mask shape, especially if you get tension headaches or migraines) and I always make sure the packs are gel filled. This allows ease of movement when wearing them like a sad girl-scout sash, and I can easily form the pack around my joints.
If you don’t have any gel packs but are in need, you can make your own by mixing equal parts isopropyl alcohol and water and freezing it in a plastic bag. It’ll get really cold but won’t freeze solid.
Being in pain 24/7 really changes your definition of ‘comfortable’. For me, comfort is anything that allows even temporary relief from the constant burning, stabbing, all-over ache. I’ve found that being in one position for too long, even sitting or lying down, can exacerbate problems. Pillows to support my lumbar when sitting, ankles and knees when lying down, and head and neck when travelling, have been my saving grace.
Those pain meds won’t help you if you can’t take them! I keep a water bottle by my bed at night and tend to carry it around the house with me in case I need to take medicine (more than the mandatory three times a day). It has the added bonus of helping me stay hydrated- something I’m notoriously bad at. For travel I like to carry a foldable water pouch. That way I don’t have to worry about it when going through airport security, and when it’s empty, it doesn’t take up a lot of room in my bag.
Heater and Fan
Due to my various chronic illnesses and medications, plus the ever changing, unpredictable weather in Maryland, my temperature goes from cold to hot faster than the melting icecaps! (Too real?) While this isn’t the most portable of tools in my coping kit, it has been vital to my comfort. I have an electric radiator in my room that can be set to a specific temperature with options for different sized rooms and timed shut-off. Bonus, it also has a remote I can keep by my bed for my horizontal days! For temperature fluctuations in the opposite direction I have a battery powered mini-fan on my bedside table for easy access and precision cooling. My advice here is to always keep your room on the cooler side. Don’t make it freezing or so uncomfortable that your joints seize up- just somewhere between 65-70 degrees Fahrenheit (18-21 Celsius). This range is not only scientifically proven to help you sleep better, it also gives your more leniency during your too-young-for-menopause hot flashes, and the Elsa-was-wrong cold spells. It’s always easier to warm up than cool down. Drink some tea, put on a sweater, pile on the blankets. You can always put more on- you can only take so much off. You know, if you like your roommates.
Comfort Items and Entertainment
Pain can be overwhelming. It doesn’t have to be a level 8 or 9 for it to feel like it’s taking over. Constant pain at a level 3 or 4 is enough to drive anyone bonkers, so it’s important to have things around to distract and redirect. This one really is up to your personal preference. I like to make sure I have a few varieties of tea (varie-tea) in the house. Chamomile for stress, lemon ginger for upset stomach, plus my favorite English Breakfast tea. My electric kettle is great because I can keep the water warm for refills.
Fuzzy slipper socks are one of my all-time favorite gifts! Fuzzy socks are great for sleeping, but when I need to walk around, I prefer the slipper versions. My balance is questionable on the best of days; I don’t need any help falling down. Fuzzy blankets are also great for days when sweaters are too scratchy on my skin, and they’re perfect for capes. You can still be royalty even in your old sweats.
Beside my bed I keep a few small activity books like crosswords and sudoku for times when I can focus enough to be bored by staying in bed. I also splurged last year and got myself a kindle fire, and I have no regrets! I love that I can keep my audiobooks and e-books close by and can even check out library books using the Overdrive app!
Though it’s a bit pricy for students, (14.99 a month) I seriously recommend an Audible subscription. Sometimes I don’t have the energy to read, let alone hold up my book or kindle, but still want to keep up with my murder mysteries. Audible allows you to purchase audiobooks and download them to your kindle or phone, and they have great options! Jim Dale reading Harry Potter is my go-to when I can’t focus as I know the stories so well, and anything written by Mary Higgins Clark is always good. There’s also a few different dramatic readings of the Bible which are entertaining as well as informative.
Obviously this isn’t something that can be by your bed 24/7, and if it could that would be super creepy, but is the best and most essential to every spoonie’s wellbeing. Being chronically ill is physically and emotionally taxing and sometimes you just need to vent. Having a group of friends, family, and even a therapist, who are familiar with you condition(s) can make a bad day better. Watching movies, playing card games, and just chatting are all things you can do with your friends from the comfort of you bed. It’s important to remember that as amazing as your friends are, and believe me I know what amazing friends are like, they don’t have unlimited emotional energy, so I highly encourage my fellow spoonies to have a therapist. Not only do they take the brunt of the emotional labor off of your friends and family, therapists can offer more coping skills and mindful practices to manage your illness. For those who cannot see a therapist for whatever reason, there are many websites that offer free, anonymous peer counseling.
Every chronic pain warrior needs their own Batman utility belt filled with coping skills and resources. They don’t have to be anything like mine, or they can be similar. What’s most important is that it works for you.