Flare Day Hacks and Tips

Some days are just bad days–which is saying something, because often my worst flare days come in the midst of a series of difficult days. When I’m flaring, it can be hard to do just about anything.

I use pacing and shortcuts all the time, even on good days. But they become especially important on the really bad days. Here are a few of the things I do to conserve energy and survive flare-ups.

Planning

Planning is a bit of a bad word in chronic illness, isn’t it? I mean, my best laid plans are most often derailed by my health. Long-term plans are difficult, but planning in the short-term is essential.

On the really bad days, I make a plan for everything I do. I lay out my clothes (sometimes the night before, if I’m anticipating a flare the next day), map my morning routine, have a rough idea of meals for the day, etc. Having a plan takes the pressure off in the moment, because I can just go through my day a step at a time ticking off the boxes of my itinerary. It also allows me to save energy.

When I move from room to room, for example, I plan ahead for what I’ll be doing next. I gather anything I might need before moving to the next room. Some days I even carry a backpack or tote bag to keep everything with me (hands free) as I move around. If I need to do something upstairs or downstairs, I consolidate tasks and do everything I can at once.

Saving Steps

Hand in hand with planning is saving steps. The less I have to walk, the more energy I have left to get through my day.

When I lay out my clothes, I try to gather anything else I’ll need to get ready for the day as well. That way everything is close at hand.

When I prepare meals, I collect all the ingredients I will need at once. I plan trips to the fridge or cupboards carefully to minimize steps. I sit as much as possible while I chop ingredients or cook at the stove.

In fact, on flare days every single move I make is calculated. I try to anticipate what I need in the moment, and also what I might need in the hour or two to come. If I can plan ahead and save future steps, I do.

Freezer Meals

Recently I’ve worked hard to have freezer meals on hand. If I make a meal for myself or for our family, I try to double the batch and freeze one meal. If I can, I take an hour or so on a better day and make several servings of food to be frozen. Then, on the really bad days, meal prep is simply a matter of warming something up or throwing ingredients into the slow cooker. It’s so much healthier than processed food or eating out–not to mention cheaper. And it couldn’t be easier. This is also a fantastic way for friends or family to help out. If prepping freezer meals is a challenge, ask someone to throw together some meals for you, or have a meal prep party with others helping to chop vegetables and prep foods with you.

Clothing Choices

Literally everything is calculated on the bad days, even my clothing choices. I typically opt for clothes that are easy to pull on, comfortable enough to nap in, and the right temperature to prevent chills or overheating. If you are a woman working outside the home and will need to dress professionally, consider finding a comfortable cotton or jersey dress that can be accessorized with easy-to-wear jewelry. For men, opt for a comfortable pull-over sweater or polo shirt. Minimize the number of buttons and fasteners, and opt for clothing that is soft and easy to move in. I find that even things like stiff pant legs can take extra energy on bad days, so I choose clothing that doesn’t restrict me or cause extra effort to move.

I choose my shoes carefully on flare days, as well. I opt for something that’s easy to slip on, that stays put on my feet without sliding around, and that is lightweight. Heavy shoes only add to my workload, and deplete my energy that much faster!

Hair Care and Self Care

On my worst days, showering can be like climbing Mount Everest. If I’m rationing my energy and coming up short for things like washing my hair, dry shampoo is the next best thing. It’s not ideal, but it saves precious energy for other activities.

I’m also careful about my hair styles on the bad days. I need a style that’s quick and easy. On work days, I still need to look professional. And I always want to be nap-ready without too much fuss. I’ve found that headbands are my best friend on these days. I can pin my bangs in place, slip on a soft headband or tie a bandana, and either leave my hair long or pull it into a loose ponytail. It’s done in seconds, and so easy (and nap-ready!).

My makeup routine is minimal on any day, but on flare days I simplify it even more. If I’m home all day, I skip makeup altogether. But if I need to make myself presentable, I keep it simple: a little lip tint, a little mascara, and a touch of blush. I find on my sickest days I tend to look even paler than normal, so adding a little color brings my face to life (even if I feel a little lifeless myself).

Finally, I use an electric toothbrush. Brushing my teeth is not a huge expenditure, but it dips into my limited energy stores. I’m able to get a good, thorough clean without much movement, and that is always a win for me.

Mobility Devices

I had a hard time, at first, with using mobility devices. For some reason I felt I needed permission from a doctor or a severe disability to “qualify” to use them. Eventually, though, exhaustion and muscle fatigue won out and I began using a cane and a wheelchair. I wish I’d started sooner.

Having a cane gives me the stability and support I need as I move around. As my fatigue increases, I find myself leaning more and more heavily on it. If I need to stand for a long period of time, it gives me some support. And it gives me reassurance that I’m unlikely to fall or slip in spite of feeling unsteady or dizzy.

The wheelchair is another great tool. At first I used it only rarely, when I knew I would be covering large distances. It was handy for trips to the zoo, shopping at IKEA, or walks in the park. Over time, though I’ve learned that it’s a fantastic preemptive tool. Using the wheelchair saves me valuable energy, which allows me to use my energy for other things. It keeps me from pushing too hard–which is sometimes the difference between a major flare with days of fallout, and just a bad day. I’m slowly learning to use it even if I don’t feel like I absolutely have to, so that I’m free to do more later on.

What are your best tips for flare days? What are the things that help you save energy for future use? I’d love to hear your ideas in the comments below!

My Favorite Energy-Saving Shower Hacks

I’m in my second week of what I’ll call a mini Personal Care Series. Last week, I talked about design solutions to save energy with your morning routine. Next week, I’ll talk about some easy jewelry options. But today I want to tackle the big dog: showering.

Why is this the thing that is so exhausting? Did you ever imagine before you were sick that you would need to recover from a shower? And yet here we are, psyching ourselves up for the big moment as though we were preparing to run the 100 meter dash in the Olympics!

If showers are a struggle for you, too, then let me share a few of the things that have saved me valuable energy.

Grab Bars

Image of plastic removable suction grab bar in silver metallic finish, with link to Walmart site.
A long narrow silver grab bar is pictured with wide rounded ends. There is a rectangular clip at both ends of the bar. White plastic suction cups can be seen at the base of the rounded sections.

Stubbornness and pride kept me from investing in a grab bar during my first two relapses, and in hindsight I regret it. Getting into and out of the tub was such a challenge, and I was often afraid of falling. When I entered my third relapse, I finally went looking for solutions. The reality for me is that I don’t really need a grab bar when I am in remission. For whatever reason, it’s just not as hard for me during those stretches to get into and out of the tub. So I wanted something removable. I didn’t even know removable grab bars were an option until I read about them here!

I invested in this grab bar, because I wanted something that coordinated with the overall look of the metal fixtures in my bathroom. Although this bar is plastic, it at least has the look of metal. There are countless other options on the market in various colors and finishes and price points. I was a little tentative about how well it would hold, but I tested it out before I used it. I pulled with all my weight, and the handle didn’t budge! I was convinced. And I can’t believe how much easier it has made things for me getting in and out of the tub to shower, or getting up from soaking in the bathtub. And the bonus is that since it’s removable, I can take it with me when I travel for extra assistance on the road!

If you prefer a permanent grab bar, check out my post dedicated just to beautiful, functional grab bars.

Shower Seat

Image of folding wooden bamboo shower seat, with link to Walmart site.
A low folding bamboo wooden stool with slightly curved seat and horizontal wooden slats. The stool is pictured open, with articulation points where legs join the seat, and at the center of the x-crossed legs.

My pride held me back from getting a shower seat for a long time, too, and I paid the price for it. I would stumble out of the shower and either sit on the edge of the tub or collapse into my bed after standing while showering. I finally gave in and tried sitting on the floor of the bathtub and discovered that it saved me some energy (although showering will always be exhausting to some extent). Having been sold on the idea that sitting might help, I went in search of a good shower seat.

There are so many wonderful options on the market, and someday I will do a post dedicated to those, too. I would have loved a fold-down wall seat or something along those lines, but it just didn’t work with our bathroom set up. We have one family bathroom where everyone showers, so it was essential that whatever I got be removable. Since our space is limited, it also needed to be collapsible. And since I am me, I couldn’t bring myself to live with something that looked medical. So this was the solution I found. It is a little lower than I would have liked, but otherwise it serves its purpose well. I love the wood, and being bamboo, it’s hardy and should last well. When I’m not using it, I can collapse the whole thing down and tuck it beside our vanity. And it really does save me energy to sit while I am showering.

Dry Shampoo and Hair Care

Image of Hask Dry Shampoo with charcoal bottle, with link to Target site.
A tall, narrow charcoal-colored spray bottle is pictured with white cap. The brand, “Hask,” appears in white at the top, with two circular logos with indistinct writing. A scalloped shape in yellow outline reads, “Charcoal with citrus.” We see a white outline of a leaf, and words around it, “Hask Clean Beauty.” Beneath, a yellow band reads, “Purifying Dry Shampoo, Long-Lasting Oil Absorption.” At the bottom, 6.3 fluid ounces.

I don’t know many of us living with chronic illness who haven’t at least contemplated dry shampoo. Not having to wash our hair, comb it, dry it, style it, and all that that involves, is an invaluable way to save energy. I have naturally curly hair, and it took me a long time to find a product that made my hair look clean without weighing it down or affecting the curl. I was over the moon when I found this product, and it has completely changed how I’m able to stretch out my hair washing days. A little bit goes a long way, and the bottle is inexpensive to begin with, so it’s a budget-friendly option too. On the days between when I wash my hair, I also find I don’t need to re-apply my hair product, which saves energy and money. All in all, this find was a life-saver for me!

I also save energy by applying my hair product in the shower. I discovered the “curly girl method” of hair styling some time ago, and have found ways to adapt it so that it’s a little more chronic illness-friendly. For example, just before I rinse out my conditioner I hold my head under the water and comb my hair. The conditioner and running water help loosen any tangles so I don’t have to do as much work. Once the conditioner is rinsed, I apply my hair gel, turn my head upside down, and scrunch my curls. Then I “plop” them in an old t-shirt and wrap them up. They can sit like that until I’m finished getting dressed, or for half an hour if I need to crawl back into bed. When I take them out, I just adjust the curls so they fall the way I want them to, and my hair is done for the day. If you have curly hair, I highly recommend streamlining your process as much as possible so that you have energy left over for other things.

Pump Bottles

Image of glass bottle with silver pump handle. Links to Target site.
A clear glass cylinder shaped bottle has a silver metal pump handle with narrow spout.

I often have joint pain, especially in my hands, so anything that minimizes pressure on my joints is helpful. Using a simple pump bottle can help reduce effort and energy expenditure and minimize pain. My current shampoo and conditioner are not available in pump bottles, and I’ve considered purchasing a bottle that I can pour the product into to save effort in the shower.

Temperature

Image of male African American hand under shower water.
An African American person’s hand is extended beneath a silver showerhead, and water trickles over his fingers.

Temperature is a huge issue when I’m showering, both in the room and in the water. I find I get chilled easily, and shiver and shake violently for a long time after I’ve gotten cold. So I am careful to make sure the room is warm enough when I go in. We have a small space heater that sits on our vanity countertop, and it helps get the room to a comfortable temperature.

At the same time, too much heat makes me feel dizzy and nauseated. I’ve learned to be careful with my water temperature to make sure it doesn’t make things worse on the other end of the spectrum. We have a jetted tub, so on days when I’m having a lot of pain or muscle aches, I love to soak in the tub with some Epsom salts. I have to be very careful not to be overly ambitious with the hot water, or I will feel faint by the time I get out. When I overheat like that, it usually takes me hours to recover. So finding the right balance in temperature is hugely important for me!

Careful Planning

Image of open calendar day planner page with illegible notes.
An open paper calendar rests on a wooden desk, with illegible notes written on various dates.

This tip may feel like a cop-out, but it’s essential: I plan my showers very carefully. If I know I will have a busy day and will be pushing my limits with the activities I have planned, I make sure it’s a short shower/dry shampoo day. If I need to dress up or have bare legs, I shower the night before and shave my legs right before bed so I can fall into bed and stay there when I’m done.

That’s just how we roll with chronic illness, isn’t it? Every step we take is calculated and planned. We think ahead to what we’ll need to do in a few hours, or even a few days, to make sure we have enough steam left in the tank for those things. It’s essential.

I also make sure I have everything gathered within easy reach before I shower: I have my clothes laid out, my towel within reach, and I set the shampoo and conditioner where I can get to them from my seat. I keep everything as close together as I can so that I can minimize steps.

Hacks I Haven’t Tried or Don’t Use

Image of wall mounted chrome faucet with hand-held shower head.
A wall-mounted shiny chrome faucet with antique handles has hand-held shower attachment. The faucet is mounted to matte light gray tiles, and we see the edge of a white bathtub beneath.

There are a few hacks I don’t use, but have heard can be helpful from others in the chronic illness community.

  • Using a handheld shower head. Many people recommend this, especially if you are showering seated. It can also be helpful if you live with chronic pain, since the water can be directed just where it is needed and avoid painful areas. For me, I have found that gripping the shower handle and having to move it where I need it actually expends more energy. When I have joint pain, it also hurts my hands. So for me, this one has not been helpful in the past. But it might be worth trying for you!
  • Wrapping in a terry robe. I’ve actually considered trying this, as it would save even more energy not having to towel off. When I’m feeling particularly wiped and sit on the edge of the tub with a towel wrapped around me, I’ve noticed the one upside is that I don’t have to dry myself off. A terry robe would wick away the water and also feel incredibly soft and comforting stepping out of the shower.
  • Using a terry head wrap. Similarly, there are great terry head wraps on the market that would make drying hair incredibly easy. They are designed, like the robe, to wick away moisture and dry the hair quickly. Not unlike my “plopped” hair, if you need to crawl back into bed after showering, you might wake to find your hair dry and ready to be styled.
  • Using an electric razor. An electric razor could be an easy way to conserve energy, as the razor does most of the work for you. It’s also possible to use it without water while seated outside of the shower, to break up the energy expenditure.
  • Using a two-in-one shampoo. Using just one product for hair (or even for hair and body) saves time and effort in the shower. Especially if you find it exhausting to raise your arms and rinse your hair, eliminating one step can be very helpful. There are many different products on the market with both shampoo and conditioner, too, to make it easy to find one that works for you.

What are the things you’ve found most helpful? I’d love to hear your suggestions in the comments!

How Can I Help?

I love the helpers. Those people who see a need and want more than anything to jump in and help. You’re the best kind of people… But how do you help someone who’s chronically ill? Where do you even begin?

If you have a heart to help but aren’t sure where to start, here are some ideas to point you on the right path. These are my suggestions, but they’re things I’ve heard echoed by others on this road with me. It’s not an exhaustive list by any means, but hopefully it will give you some food for thought and a place to start.

1. Be willing to come to me.

When I’m in a bad stretch, it takes a monumental effort to get out of the house. And if I’ve had to do anything else that day, like work or attend a school function, I’m probably depleted. When we have plans to get together, be willing to come to me. Understand that my house probably won’t be picked up and I may not look my best, but you’ll have helped me save my energy for the thing that matters more: spending time with you. When we get together, be mindful of the time. I don’t want to rush you, but in all honesty after an hour (or two at most!), I’m probably exhausted. Be willing to cut the visit short so I don’t have to feel awkward about asking you to leave, or push harder than I should. Shorter visits might mean I can see you more often.

2. Offer to meet me in alternative ways.

Maybe I’m just not up for an in-person visit. I know that might seem strange, but being face to face with someone in person requires a whole lot of energy sometimes. So be willing to meet me in alternative ways: by Zoom or Skype or FaceTime, for example, or just talking on the phone. I know it’s not the same, but virtual visits are sometimes easier, and I can talk to you from my bed if needed. Let’s keep it short, too. An hour is probably as much as I can handle some days. I want to see you, so if you’re willing to meet in non-traditional ways, I’d love to hang out.

Image of Caucasian woman in bed looking at smartphone.
A Caucasian woman with short brown hair is lying on her side in a bed next to a window with blinds drawn. She has a blue t-shirt on, and holds a phone one hand. She is typing on the screen with her other hand. Her face appears tired as she looks at the screen.

3. Be understanding of cancelled plans.

Please understand that cancelling my plans with you doesn’t mean you don’t matter to me, or that I don’t care about our relationship. Maybe I was active yesterday, and I’m paying for it today. Maybe I woke up to a bad day and I’m just barely functioning today. Maybe I have something coming up that I can’t get out of, and being with you will use the energy I need for that. In any case, please don’t take it personally or think I’m being flippant. If we can, let’s make alternate plans (see above). If not, please know that I would love to see you another time, on a better day.

4. Offer to pick up groceries or run errands for me.

There are few things more exhausting to me than going to the store. When I’m in a bad stretch, I just can’t do it. So if you’re willing, offer to run some errands for me. The pandemic has been difficult, but it’s been good for me in one sense: many stores now offer drive-up or delivery of groceries. Still, maybe this isn’t an option for me, or maybe I can’t even get to the store to pick up the things I’ve ordered. There also might be other things I need that aren’t available for pick-up: items from the hardware store, specialty groceries, prescriptions, etc. If you would be willing to pick up those items for me, it will save me a lot of exhausting running around.

5. Offer to bring me a meal.

Sometimes the thought of making meals for myself or my family makes me want to curl up in a little ball. It takes so much energy some days to cook even simple meals. Offering to bring me a meal is a huge help. It can be something you’ve cooked or something you’ve picked up–either way, it’s a meal I don’t have to make! It can even be helpful to drop off some freezer meals that I can have on hand for future bad days. If I have food restrictions or allergies, offer to pick up food from a local restaurant that’s safe for me, or have it delivered to my house. Gift cards are great for this, too, although sometimes getting out of the house to spend them can be a challenge.

Image of pasta casserole dish.
A colorful pasta casserole dish with pepperoni rounds, cavatappi noodles, and green garnish in beige ceramic casserole dish is shown sitting on an oval woven jute trivet.

6. Offer to help me clean or make home repairs.

When I’m in a bad flare-up, things like housecleaning and home repairs go to the very back burner. Even if I live with a spouse or significant other, chances are much of their free time is devoted to caring for me and taking care of the things I can’t do. Offering to help me clean is humbling, but very helpful. Make it simple, and don’t judge me for the messes. Or, if finances allow, hire someone to deep clean my house for me (once, or routinely). Offer to help with those home repair projects that I just can’t seem to get done: that leaky faucet, the door that isn’t closing properly, or the wall that needs to be patched. Odds are those things are bothering me as I sit on the couch or in bed, but I just can’t do them for myself right now.

7. Help me do something that I love.

Maybe there’s something that I really enjoy, like gardening or walking in the park. I would love to do it in some capacity, but on my own it’s too overwhelming or exhausting. If you work with me, maybe we can do it together. Work alongside me to get my gardens ready to plant this spring. Help me with a craft project I just can’t finish on my own. Walk with me or push me in the wheelchair so I can enjoy a stroll in the park. It will be life-giving to me to do something that I enjoy!

Image of a man pushing another man in a wheelchair along a boardwalk.
A man in shorts, t-shirt, and baseball hat is pushing another man in short sleeved shirt in a wheelchair along a wooden boardwalk. In the background we see a cliff edge with trees, mist, and what appears to be reflective water next to the boardwalk. The sun is in front of the men, and we mostly see them as dark silhouettes.

8. Offer to take my kids for a while.

I love them, and I love my time with them, but odds are they’ve been cooped up in this house with me and they’re as sick of my being sick as I am. Have them over for a playdate, offer to hang out with them in the backyard, take them to the zoo… They need a break from chronic illness, and right now I can’t give it to them.

Likewise, invite my spouse to go out for coffee or drinks, or to hang out. He (or she) has probably been spending a lot of time caring for me and tending the home fires, and could use a night to get away and take a break.

9. Offer to pick up books, craft supplies, and things to help me pass the time.

I spend a lot of time at home resting. Sometimes I need sleep, but much of my time is spent in a sort of limbo. I would love to get out and pick up new books to read, or craft supplies, or crossword puzzles, but I just can’t get out. Offer to bring me some things that can help me pass the time. You don’t have to buy them–I’m happy with borrowed items! I would just love a way to fill my time besides a screen.

10. Send me notes or care packages.

This is the long haul. Picture your worst day sick day, and then imagine that the symptoms last for weeks, months, or years. That’s chronic illness. It’s easy to think about a get well card for acute illness, but sometimes we forget about the challenge of living with chronic sickness. I can cope with the day to day for the most part, but sometimes I get discouraged. A little note telling me you’re thinking about me, or a small care package with inexpensive thoughtful gifts lets me know you understand, and brightens my day. Some days, it’s the encouragement I need to keep going.

11. Help me find the humor.

Follow my lead and don’t laugh at me, but help me see the funny side in embarrassing situations or my limitations. Help me laugh at myself and my circumstances, because there’s nothing better for coping. Laughing with me lightens some of the burden and helps me feel connected to you. And it probably makes you feel less awkward around me, too.

Image of three Hispanic women laughing together and embracing.
Three Hispanic young women are lying on a white tile floor with arms around one another, and they appear to be laughing. All three have black curly hair and their mouths are open mid-laugh.

12. Be willing to listen.

Be willing to listen while I talk, and take it seriously when I grieve the things I’ve lost. I’ve had to give up a lot of what makes me me, and much of what I enjoy. Let me be real for a minute and don’t try to fix me. I know it’s uncomfortable, but just sit with me while I process and grieve. I promise I won’t always be this down.

13. Help me to dream.

Sure, I can’t take that trip to Egypt I’ve been dreaming about for years. But help me dream about the things that I CAN do, and help me find ways to make my dream accessible. Maybe I can’t go to Egypt in person, but let’s take a virtual tour, order Middle Eastern food, or visit a nearby accessible museum instead. I live in Plan B, but there are still ways to do the things I dream about doing.

14. Help me find accommodations.

If I work with you, help me find ways in which I can still do my job, like sitting, or not lifting things. If I live with you, help me find solutions so I can still be a part of family life. Understand that I might need you to carry some of the load. I feel awful about it, and if I had any choice I wouldn’t be asking. But this is my reality for now.

15. Don’t cut me out of your life.

Don’t think that all we can talk about is my health. Sure, I hope you’ll acknowledge it–after all, it’s the elephant in the room and the thing that affects my whole life. But it’s not all I am. And I want to know what’s happening in your life, too. That’s the thing with relationships: they have to go both ways. Don’t hesitate to share what’s going on in your life and to talk to me about other things. Trust me, I need a break from this too.

16. Believe me.

Chronic illness and chronic pain are often what you might consider “invisible illnesses.” From the outside, it can be difficult to see the symptoms that are affecting daily life. I may not look sick to you, especially if you are only seeing me for short periods of time or catching me on a good day.

To make matters worse, in the pursuit of a diagnosis most of us have undergone countless tests and specialist appointments, only to be told that results are normal, or to have providers throw their hands in the air and call us a “medical mystery” before passing me on to the next provider.

Lurking in the back of my mind are fears about how you perceive me. Do you think I’m being melodramatic? Do you think I just can’t cope? Do you think I’m making all of this up? I once read where someone said, “The most empowering thing you can say to someone with chronic illness is, ‘I believe you.'” I can tell you from experience that there is nothing you can say or do that will make me feel more supported and understood than those three words. And that is what I need more than anything.

Comfortable Bedding Options for Chronic Illness

Fatigue is the ever-present companion of chronic illness, and if you suffer from a medical condition, odds are you are no stranger to it either. In fact, you may sometimes feel you spend more hours of your day in the bed than out of it.

With so much time devoted to rest, finding comfortable bedding is a wise investment. We live in an old house that has definite hot and cold spots, and no spot is colder than the master bedroom in the winter. Overnight, our room temperature routinely sits around 53 degrees F, and it doesn’t climb much higher during the day. For years we made do with whatever blankets and sheets we previously owned, but the cold didn’t do any favors for my symptoms. Last year we decided to splurge on some new sheets, and to say that they have been a game changer would be an understatement!

So, with that in mind, here are a few ideas for ways to make your bed more comfortable and chronic illness-friendly.

Sheets

Image shows fleece bedsheets with forest gnome theme, and links to Kohls website.
A set of fleece bed sheets with light or dark green evergreen trees; red and white mushrooms; and small gnomes with light or dark green tunics, long white beards, and red pointed hats scattered about.

These are the sheets that changed my life (although I don’t have them in this fabric, and I wish I did!). If you live anywhere in a cold climate, I can’t recommend enough that you invest in fleece sheets. Unlike flannel, these are warm to the touch almost immediately. They’re soft and cushiony, and feel like wrapping up in your favorite broken-in sweatshirt or sweater. They’re inexpensive and hard-wearing, and hold up fantastically well even to frequent washing. If you suffer from neuropathy, the smoothness of the fleece fabric may also be helpful to you, since they’re less abrasive and irritating than cotton or flannel sheets. I will never again not own fleece sheets!

Image shows white cotton sheets with gray striping, and links to Target website.
White cotton sheets with thin dotted gray vertical stripes are folded, with each piece stacked on top of the other, and a pillowcase slightly unfolded on top of the stack. They are on a white background.

On the other end of the spectrum, in warmer weather nothing beats a nice soft cotton sheet. While there are certainly luxury high-thread count sheets out there, sometimes you can find something just as workable at a lower price point. These cotton sheets are soft and breezy, and stay nice and cool in the summer. They’re washable and easy to maintain and come in a variety of styles. If you suffer from night sweats, hot flashes, or sensory issues related to heat, then cotton is probably going to be your best friend.

Image shows custom sheet set with both flannel and cotton sheeting, and links to Etsy seller.
We see a close-up of two pieces of fabric. On top, there is beige flannel material with rough weave. On bottom, we see solid white cotton fabric.

What if you share a bed with someone who is warmer blooded than you? Or colder? In all honesty, this seller beat me to an idea I’ve had for years: sheets that are half flannel and half cotton! This shop will create sheets that are warm on one side and cool on the other. You can customize what type of fabric, which side, and just about everything else. If bedding and temperature have been a battle zone in your bedroom, this may be a great solution.

Blankets and Comforters

Image shows white down alternative duvet, and links to Wayfair website.
A bedroom with dark blue walls and light wooden floors has a beige upholstered tufted headboard with brass hobnail along edge. An assortment of white and beige pillows sits against the headboard. A fluffy white duvet is draped over the end of the bed and falling onto the floor.

If you suffer from pain or a neurological condition, it’s possible that the sensation of weight can be comforting to you. While a down comforter has long been the gold standard in bedding, sometimes a down alternative comforter is the more practical option. A comforter such as this one provides the warmth and weight of a down comforter, but is likely to be hypoallergenic and far easier to wash. Cover it in a soft flannel duvet cover to make it even easier to clean, or even to switch out with the seasons. For my neuropathic symptoms, I often find it comforting to have the slight weight of a comforter like this pressing on me while I sleep.

Image shows flannel striped duvet cover and links to LL Bean website.
A bed with flannel gray and white mattress ticking duvet has comforter folded down and we see a white sheet and assortment of white and ticking pillows against a beige wall.

This is the duvet cover I’ve owned for the past twelve years. It is incredibly well-made, easy to wash and replace, and so very comfortable. In time, some of the softness of the flannel has worn down so that the fabric resembles a regular heavy cotton. But it has held up to all sorts of abuse in my house and lived to tell the tale! L.L.Bean has some great policies for replacing worn and damaged products, too, so the higher initial outlay may be worth it in the end when it comes to the longevity you get out of their products.

Image shows a beige Sherpa blanket and links to Wayfair website.
We see a beige velvety Sherpa blanket folded on itself against a white background. The top layer is folded back to reveal a corner of white fluffy lining.

For ultimate comfort and warmth, does anything beat a Sherpa blanket? These babies are soft, heavy, and easy to wash. If you suffer from neuropathy or chronic pain, you may find the fluffy weight comforting and soothing. They come in a variety of styles, colors, and sizes to work with any room.

Image shows sustainably sourced, recycled wool blanket with link to World Market site.
A beige wool blanket against white background has beige fringe at the bottom, and a black label reading “Sackloth + Ashes.” Above this label, we see a thick dark charcoal stripe, a golden stripe, a white stripe, and a pale blue stripe. The blanket is folded on itself and appears at an angle.

Sometimes for a nap, all you need is a good throw blanket. I challenge you to find a better blanket than this one. This company, Sackloth + Ashes, is one of the companies at the top of my list of favorites. Their blankets are all made from recycled, eco-friendly products. Many are designed by indigenous people, and reflect the colors and patterns in their region. For each blanket purchased, the company will donate one of their beautiful blankets to a homeless shelter in your local area. With some purchases, the company will also donate firewood to local Native American elders in the region where the blanket was designed. As if all of that weren’t enough, the blankets are some of the warmest, softest, most durable I have ever found. If you are looking for a worthwhile splurge, this is absolutely the place to spend your money! While the photo link will take you to World Market, these blankets are also widely available in local shops and boutiques, and I encourage you to shop locally!

Pillows

Image shows bamboo bed pillow, with link to Bed Bath and Beyond site.
A quilted white pillow sits on white background. Scattered across pillow, we see “Miracle Bamboo Pillow” written in sage green embroidery with outline of bamboo shoots.

Pillows are such an individual thing, and the wrong pillow can affect sleep more than any other factor. Some people prefer a hard pillow, others prefer it soft. Everyone has a preference for pillow height and length and just about every other specification you can imagine. But for an excellent, basic pillow that meets everyone in the middle, I can’t think of a better option than this one. I bought it a few years ago, and it has given me many, many nights (and days!) of good sleep. It holds its shape without being too firm. The combination of memory foam and bamboo provides just enough support, but also has a little give when I press my face into it. And I can mold it and shape it under my head or neck to support me the way I need when I’m sleeping.

Image shows woman resting on a series of contoured and angled pillows and links to Contour Living website.
A Caucasian woman with long straight blonde hair lounges in dark brown tank top and loose pants on a series of angled wedge and contoured white foam pillows on a white background. Her hands are folded in her lab and her legs are extended over the pillows. She rests her head on a curved neck rest and smiles peacefully.

If you suffer from pain or spasticity, sometimes versatility and support are the name of the game. Wedge pillows, especially in a variety of shapes and sizes such as this set, can help with positioning and relieving pressure. The different configuration options with a wedge pillow allow you to change up your arrangement depending on your symptoms or pain severity on any given day. They are also helpful for anyone with immobility issues or paralysis, since positioning with pillows like this can relieve pressure points and reduce the risk of pressure ulcers and sores.

Headboards

Image shows brown-gray upholstered tufted headboard, and links to Wayfair website.
A bedroom with solid beige wall with misty seaside painting hanging and brown-gray upholstered tufted headboard is flanked by two side panels with white cording. The bed is made up with an embroidered beige comforter and an assortment of matching beige and white pillows. There is a nightstand of dark espresso wood with single drawer to the right of the bed. A silver fluted lamp base and light blue barrel linen lampshade sit at the back of the nightstand, and there is a small silver vase holding purple tulips in front.

Whether you are spending your time in bed sleeping, resting, or reading, it’s important to have good support. A padded or tufted headboard is a great option to make an extended period in bed more comfortable. Styles, sizes, and colors vary widely. Look for something that is supportive and comfortable, and that can be wiped clean if needed. When you are spending extended periods of time in bed, you are likely to put more wear and tear on a headboard or bedframe than usual, so make sure the construction is solid enough to hold up.

Image shows upholstered bolster pillow, and links to Etsy seller.
A gray tweed upholstered long bolster pillow is trapezoidal in shape, and we see it looking from the right side across the front and into the distance. The pillow sits against a light beige background.

If you already have a headboard you love, but you don’t find it particularly comfortable, a bolster pillow is another great option. This provides the function of a padded headboard, but can be removed when not in use. As an added bonus, many bolsters come with removable covers, so they’re easy to wash. They can also be positioned in different ways for maximum comfort. They come in a variety of colors and styles: from streamlined like this one, to tufted or tasseled, or everything in between.

Final Notes

Let me just take a minute to step away from the practical details to say something I suspect you may need to hear as much as I do: it’s ok to rest.

It’s ok if you have to cancel plans. It’s ok if the housework doesn’t get done today. It’s ok if full-time work just isn’t possible for you right now. It’s ok if your schedule isn’t brimming with activities like your friends’ and families’. It’s ok if you’re not there for every moment with your family. It’s ok if you aren’t doing all the things you used to do. It’s ok. 

Rest is not an indulgence or selfishness or laziness. Rest is a need. It is an unavoidable part of chronic illness, and it is essential. So let me say it again: it’s ok to rest.

And now I’ll confess that I wrote those words with tears in my eyes, because I know that rest always seems to come with strings attached. I often feel guilty, sad, grief-filled, selfish, and all kinds of things about the amount of time I spend resting. But I seldom feel permission to rest. 

So I hope you find the bedding and the environment to enhance your rest and ease your symptoms just a little. But most of all, I hope you feel you have the permission that you need to get the rest that your condition requires. This is all a part of chronic illness, and we all must do what we can to make even this part more livable.

Rest well.

Celiac-Friendly Cosmetics

When I was first diagnosed with celiac disease, it seemed as though gluten was lurking absolutely everywhere. I found myself obsessively reading nutrition labels, menu fine print, and reviews and discussion panels for every item that touched my body. It was exhausting.

The biggest struggle, though, was finding cosmetics that were celiac-friendly, worked with my rosacea, and were budget-friendly. It took me months and months of research and cold calling companies before I finally found my current go-to products.

Whether you are recently diagnosed with celiac, have gluten sensitivity, or are just looking for some new cosmetic options, here are a few of my favorite cosmetics. There are many more on the market (in varying price ranges), but these are my personal favorites.

Foundation

Image shows a tube of Ecco Bella foundation, and links to Ecco Bella website.
A small tube of foundation makeup with black cap is set against white background. The top of the bottle reads, in large black font, “E-B,” and “Ecco Bella,” in slightly smaller font beneath. Beneath this, we read “Flower Color” in small black font. At the center of the tube, we read “Natural Foundation.” Beneath that, the color is identified as “Natural,” and the bottle is labeled with 1 fluid ounce or 30 milliliter size.

This product from Ecco Bella has become my daily foundation. It is gluten free, vegan, and organic. It comes in a range of shades and colors. The coverage is lightweight and smooth, but manages to even out the redness of my rosacea. Plus, a little bit goes a long way, so I get several months out of each bottle!

Image shows Physician's Formula open compact, with link to Target website.
A bright blue round makeup compact has lid open to show swirled pattern in pressed powder. The powder appears in a medium skin tone, and the compact sits on a white background.

To eliminate that shine and set my foundation, I’ve come to love this powder from Physician’s Formula. I reached out to the company, and they verified that this product is gluten free. I’ve been using it for two years, and have never had a problem. And it is far more affordable than many of the pressed powders out there!

Lip Color

Image shows Burt's Bees Daisy lip tint, and links to Burt's Bees website.
A close-up of Burt’s Bees lip tint tube in maroon red color with black background label sits against a white background. In sideways large white font along side of tube, we read “Burt’s Bees.” Beneath this, in smaller white font, we read, “Tinted lip balm” above.” Barely visible beneath this, we see in red font the word, “Daisy.” The cap on the tube is maroon in color, with black twistable base.

For my daily make-up routine, I usually apply this lip tint by Burt’s Bees. It provides just a little color without being too dramatic, and it’s great for moisturizing my lips. Burt’s Bees can’t guarantee that all of their products are celiac-safe, so I would definitely use caution. But I’ve never had an issue with this particular lip tint.

Image shows a package of four differently-colored lip tints, and links to Sky Organics website.
A package of four lip tint lip balm tubes is set against light peach colored background. The packaging is bright green and white. At the top of the packaging, in lime green writing, “Sky Organics. The “O” is in the shape of a globe, with leaves sprouting from the “G.” Beneath in black font, “Tinted Lip Balms.” Four lip tints are shown in the packaging, a soft champagne, light peach, plum red, and deep purplish maroon.

Another great option for just a little lip color in your daily routine is Sky Organics. Their products are gluten free, cruelty free, made from responsibly sourced materials, and affordable. If you like to change up your color like I do, this four-pack is a nice way to get variety at a reasonable price.

Image shows a set of four Eos lip balm tubes, and links to Evolution of Smooth site.
A set of four Eos lip balm tubes is seen against a beige background. The tubes, from left to right, are light green, light pink, beige, and bright orange. Stamped onto each tube in an oval stamped shape, we read, “E-O-S.”

For keeping my lips moist and healthy, I can’t do much better than Eos lip balm. Their ingredients are organic and gluten free, and they come in multi-packs that are affordable, with great flavors. I have an Eos lip balm in just about every room of the house for emergency use!

Image shows Burt's Bees lipstick in maroon red shade, and links to Burt's Bees website.
A tube of Burt’s Bees lipstick in deep red shown against a white background. The tube is square shaped and long and narrow, with matte black cap. We see the lip tint visible through the clear sides of the tube. Viewed sideways, we read in white block font, “Burt’s Bees.” In small font beneath this, we read, “Liquid Lipstick,” a small white bee shape, and the words, “Rouge a Levres Liquide” (in French).

This glossy lipstick from Burt’s Bees is perfect for special occasions and for dressing up a little. It’s easy to apply and the liquid is moisturizing. The color is very saturated, and stunning. Again, not all Burt’s Bees products are celiac-friendly, but this one has been very good to me.

Image shows Covergirl Outlast Lip color tubes in coral color, with link to Rite Aid website.
Three tubes of lipstick are shown side by side on a white background. The first tube is solid white with silver band, and a white lip gloss pictured with angled top. The word “Covergirl” Next to this, we see a tube of coral lip color with long white cap and silver band, also imprinted with “Covergirl.” The tube on the far right shows the cap removed from the colored lipstick, and we see the white cap, silver band, and a wand applicator with tip covered in coral lip tint.

For really high drama, I love Covergirl’s Outlast All Day lip color. Most of Covergirl’s products are not considered celiac-friendly, and I did a lot of research and finger crossing before taking a chance on this particular product. So far, I haven’t had any issues. The color is very intense, so this isn’t one that I use often. But it’s stunning when I use it, and I haven’t had any problems at all.

Blush

Image shows compact of pink E.L.F. blush powder, and links to E.L.F. Cosmetics website.
A black round blush compact is open to reveal pink colored pressed powder. Lid has circle of clear plastic barely visible with “E-L-F” written in black block lettering on the plastic.

My everyday blush is this product from e.l.f. I actually spoke with the company directly, and they confirmed that this blush was gluten free. The majority of their products are actually celiac-friendly, and their prices are hard to beat! I use their eyeliner, as well, and I’ve used their mascara in the past with great success.

Eye Make-Up

Image shows black retractable eyeliner pencil by E.L.F., and links to E.L.F. Cosmetics website.
We see a long thin black eyeliner pencil with retractable tip on white background. Sideways along end of pencil, we see in white bold lettering, “E-L-F.” A slender black cap sits at an angle to the tip of the pencil.

Simple, effective, and affordable. In all honesty, I don’t want to have to overthink eyeliner, and this is about as easy as it gets. Again, most of e.l.f.’s products are gluten-free, and they’re extremely affordable.

Image shows Physician's Formula organic mascara vial with leaf-shaped cap, and links to Physician's Formula website.
A vial of mascara is opened with cap lying parallel to tube. Vial is off-white in color with light green shading at bottom of tube. Seen sideways along the bottle, in all caps black lettering, “Physician’s Formula.” Beneath in sage green block with white lettering, “Organic Wear.” Under this, in smallest black font “Natural Origin Mascara” with smaller subscript, “With olive extract.” The cap is shown detached from the bottle, with mascara brush facing upward. The top of the cap is shaped like a slightly curved leaf coming to a point, and shaded with the same light green as the base.

If there’s one thing I hate, it’s clumpy mascara. Ugh! This product from Physician’s Formula has been fantastic. I often find it for a reasonable price, it goes on evenly without clumps, and it lasts me forever. Plus, thanks to some kind of organic formula magic, it doesn’t smudge or run when I wear it, but washes off easily when I wash my face at night. I can’t recommend this mascara enough.

Lotions and Creams

Image shows pump bottle of Alaffia everyday lavendar lotion, and links to Target website.
A bottle of Alaffia lotion has a label of bright purple in color with golden yellow band at bottom. Pump handle is bright yellow also. In geometric-shaped black font, “Alaffia” at top of label, with small diamond shape in yellow beneath this. In large white block font at center of label, we “Everyday Shea,” with “Body Lotion” in smaller gray lettering set in a black block. Near the bottom of the label in small white font underlined in yellow, we read “Lavendar.” Three rows of small white dots and a dark people leaf shape are visible at bottom right of label. Additional wording is seen at bottom edge of label, but is illegible in the photo.

Oh, man, this lotion… I have to give a disclaimer that if you don’t particularly like the smell of essential oils, you may not like this one. However, this lotion is light, smooth, moisturizing, and extremely affordable. It lasts me several months. I am a sucker for a product that gives back, and this company does just that. Every purchase supports community development in underserved areas in Africa. It is gluten free, cruelty free, and organic. And it’s light enough that I can apply it immediately before applying make-up with no smudges or weird streaks.

Image shows large bottle of Curel Ultra Healing lotion and links to Target website.
A large white pump bottle of hand lotion is seen on white background, with silver-colored pump. Across the top of the bottle in large black letters, “Curel.” Beneath this we see a silver pharmaceutical-like logo caduceus set in a silver circle, with “Dermatologist Recommended” in small black font beneath. A wide angled swooping stripe with large white wording, “Ultra Healing,” and “Intensive Lotion for Extra-Dry Tight Skin” in smaller font are beneath. A silver shield-shaped logo with three crosses and wide silver stripe separate the red band from a light gray band. Small black writing in the gray band reads, “Helps repair extra-dry skin 2 times better” and “Helps repair moisture barrier with advanced ceramide complex.” Beneath this, “20 fluid ounces” and “591 milliliters.”

Sometimes the best products are the simple ones. While this brand, and even this product, are not specifically classified as gluten free, I did a lot of research before using this one. This was my go-to lotion pre-diagnosis, and it worked better than anything else I had tried for healing my hands (especially when I was working as a nurse). From everything I could discover, the lotion didn’t contain any gluten and was not manufactured on machinery that processed gluten, so I took a chance. I am careful to wash my hands before eating, but even when I’ve forgotten, I’ve never had an issue. This lotion is also non-comedogenic, so I’ve used it on dry patches on my face at times when my rosacea is especially bad. It’s just a great all-around lotion!