This month marks seventeen years for my husband and me. Needless to say, we’ve been through an awful lot together in those years–including many ups and downs with my health. I recently wrote wrote a piece for The Mighty that highlights some of the ways our marriage is better because of my illness, and I want to share it in celebration of our anniversary.
It’s often easy to come up with all the negative effects of chronic illness and disability (and with good reason), but similar to my post about why I’m glad my kids are living with this, I think my marriage is richer as a result of illness being part of our lives.
I thought we knew each other well, and in many ways we did. But after years of sitting at hospital bedsides, navigating new symptoms, riding the rollercoaster of chasing down diagnoses, adapting to limitations and changes, and carrying each other through the pain and loss and fear, we really know each other now. We’ve had difficult conversations about topics we never would have broached. We’ve whispered about our deepest fears in waiting rooms, or lying together in the dark at night. We’ve held each other when it was all too much, and laughed together in spite of it. Chronic illness has taken us far deeper than we’d gone before, and we’ve discovered more and more of each other with each new layer.
2. We have learned how to care for one another.
We’ve navigated a lot together. In addition to the regular stresses of marriage, raising children, and our careers, we’ve had all the ups and downs of my chronic illness journey. And we have had to learn how to help each other through it. We’ve taken turns holding each other as we’ve cried, and we’ve made each other laugh in the midst of the hard times. We have each made space for the other person to rest. He’s picked up the brunt of the work on the home front, and I’ve learned what it means to support and encourage him from my post on the couch. We’ve adapted to my physical limitations to find ways to connect with one another. In so many ways, we are just better at taking care of each other than we ever were before.
3. We’ve learned to laugh in the midst of hard times.
I sometimes rely on a wheelchair because of my weakness and fatigue. When I am out in the chair, I often receive comments from strangers about how brilliant my smile is. It always catches me off guard, because in some ways, wheelchair days should be my hardest. But we’ve learned to turn it around. My husband often pops wheelies when he is pushing me, or leans in to make jokes. I find that most of my memories in a wheelchair are memories of laughter. In the same way, we’ve learned to laugh at my physical limitations: the ridiculous ways I flub my words with brain fog, the way that I feel like an elderly woman with my cane, the way I make him do all the heavy lifting around the house. We poke holes in the darkest sides of chronic illness and laugh together, and it carries us both through the challenges and brings us closer.
4. We’ve found new interests and hobbies together.
I loved to ride my bike before my illness. When my symptoms made riding impossible, I was devastated. But my husband bought me a picture of a tandem bike and reminded me that there is still a way back to the things we love most. A few years into my illness, we bought our own tandem bike. It’s become a favorite shared pastime. We joke that I do as much work as Kermit the Frog does on his bike (in fact, we call my frequent lack of pedaling “Kermit the Frogging”), but I find it exhilarating to be riding a bike at all again. We ride trails and roadways together, pack picnics in the bike basket, and explore new places. We’ve found a new shared interest that we can enjoy together in spite of my limitations.
5. We know our commitment to each other is real.
On that same tandem bike picture my husband gave me were the words, “Where You Go, I’ll Go.” We vowed on our wedding day to love each other “in sickness and in health,” but I often worried that my husband felt duped or disappointed that the “in sickness” was such a prominent part of our lives together. Instead, he took the opportunity to reaffirm that we are in this together, no matter where it goes. We know what it’s like when the worst we could have imagined happens, and we’re still here. I know without a doubt he’s not going anywhere, and he knows I’m not going either. We both know we are committed to this no matter what.
It’s no secret that when one spouse lives with chronic illness, both spouses live with it. I’ve written before about how chronic illness has affected my marriage. To be honest, sometimes I think I could fill books with this topic! But one of the things my husband has noticed is that there’s very little out there from the perspective of the spouse of someone with a chronic illness.
So I wanted to take the opportunity to share his perspective on things. As we were discussing these questions and he struggled to answer, I found myself asking often, “What do you wish another spouse would share with you?” It’s validating to know we’re not alone in our experiences. And when we framed the questions in that way, he almost immediately knew the answer he wanted to share.
If you are the husband, wife, girlfriend, or boyfriend of someone who lives with chronic illness or disability, I hope you find my husband’s perspective encouraging. And I hope you feel a little less alone in this journey.
1. What is the hardest part of living with a spouse with chronic illness?
I think there are several things that are really difficult:
Not being able to fix it. I want to be able to do something, and I can’t.
Loss, for both of us. There are things that we just can’t do anymore. I’d love to go for a walk or ride a bike, or go on trips together. And we just can’t; or at least, not in the way we’d like to.
Getting frustrated with myself for feeling selfish. There are times when I don’t want to carry the extra load. There are days when I know I should come home from work and help out around the house, and I don’t want to. And I get frustrated with myself for being selfish. You have to live with chronic illness; I can live with having to empty the dishwasher or doing laundry.
2. What has been an unexpectedly good part of this, or something you’ve come to appreciate?
Intentionality. We have to be purposeful about planning times together, taking advantage of the opportunities that we have to enjoy good days.
And closeness. We’ve had to lean on each other more because of this–sometimes physically, but often emotionally. We’ve had to be really open with each other along the way.
3. What’s one thing I could do to make things easier for you?
I think it’s probably specific to each person’s situation. For me, I would say: “Don’t make it worse.”
There are times when I caution you to take it easy or not overdo it, because I know you’ll pay for it later. But sometimes you push through for the sake of getting something done or because you’re feeling a little better in the moment, and then you crash harder on the other side.
4. What’s something we’ve done or learned that’s been helpful?
I think we’ve gotten better at budgeting energy, time, and expectations. If we have something coming up, we make sure we’re prepared (and you’re rested). We’ve learned to sometimes say no to things, or to pass up opportunities. We’ve learned to prioritize.
5. What’s one thing you would say to another spouse living with someone with chronic illness?
I would say you have to take care of yourself, too. For a long time I’ve tried to be the strong one, but this is hard on me too. I’m learning to make time for hobbies like disc golf and smoking meat, but I’m not always good about this yet. This is a marathon for both of us, and it’s important to take care of myself too.
6. What have we done well to keep our marriage vibrant through all of this?
We’ve purposely planned dates and set aside time to be together. We’ve planned some getaways around your health and needs. And we’ve learned to laugh about it. I think that’s been really important. We’ve made each other a priority, even if that means saving energy throughout the day so that we can have meaningful time together.
7. What’s something you wish other people knew or understood about this?
I wish people understood that this is not going to go away, and it’s not going to magically get better. I think that’s hard to understand unless you’ve lived it.
Also, sometimes what we want most is to be treated normally. I sometimes wish every conversation with other people didn’t revolve around this. On the one hand, I want people to be aware of the situation and I don’t want them to ignore it. But I want people to remember that there’s more to our lives than just this.
If you are a spouse of someone living with a chronic condition, what are your thoughts on these topics? What has been most difficult for you? Most helpful? What do you wish people understood? I would love to hear your perspective in the comments below! As spouses in the long haul with us, you need support as much as we do!
If you are a parent living with chronic illness, disability, or chronic pain, you know all too well how hard it can be to find ways to spend time with your kids. Some days it’s all I can do to sit up, let alone find the energy to play with them! And then, inevitably, I feel consumed by guilt, or feel like I’m missing out on precious family time.
Here are a few ideas for activities that won’t take much out of you, but will mean the world to your children. Like my list of winter activities and summer activities, many of them can be done from the comfort of your couch or bed (so you may even find some options for flare days)!
1. Blow bubbles.
Regardless of your child’s age, there’s something relaxing about blowing bubbles. For an easy, peaceful activity, there’s nothing better. You can blow the bubbles yourself from the comfort of a chair, ask your child to blow them, or pick up an inexpensive battery-powered bubble machine. If you’re really feeling brave (and willing to deal with a little mess), you can even blow them indoors.
2. Enjoy bird watching.
I live for the first sounds of birds calling to one another in the treetops in spring! It feels like the official announcement that winter is finally behind us. The beauty of birds is that they can be found just about anywhere, from rural to urban settings. Spend a little time watching for the birds that are native to your area. If you have a place for it, hang a birdhouse, or a window-mounted bird feeder to enjoy a closer view.
There are some great apps that help you identify the species of bird you’re seeing (or hearing). Merlin Bird ID is a free app my husband loves to use with our kids. It allows you to search by appearance (size, color, and the bird’s activity/location), or by sound (a short audio recording of the sound identifies the bird, or you can listen to pre-recorded audio snippets to compare to what you’re hearing).
If your area has a lot of birds, you could create a “Bird Bingo” card for each family member. The first person to spot all the birds on their card wins a prize!
3. Plant a garden.
There’s just something about gardening that makes you feel more alive. For kids, there’s the added sense of wonder and discovery as they watch tiny seeds grow into mature plants. It’s just an amazing process!
Full-on gardening with chronic illness can be challenging. I’ve written some tips for making gardening accessible in general. But if a full garden isn’t an option for you because of space or ability, it’s still possible to experience the joy of watching plants grow!
For an incredibly simple way to start growing plants, simply place dry lentils or beans in a shallow cup amid dampened cotton balls, and place them in a sunny spot. Within days, tiny shoots will grow from the “seeds!” This is an especially great option for young kids who lack the patience to wait for seeds to germinate normally. It’s also a great way to grow microgreens that can be eaten in salads or other dishes.
Vegetable plants can be started indoors in early spring, and transplanted as they grow. Many vegetables can be grown in pots or containers, and some will even thrive indoors. So you can grow your own food even if outdoor space is limited. For recommendations for best things to grow, planting schedules, and other information, the Farmer’s Almanac is always a great resource.
If vegetables aren’t your thing, there are many flowers that can be grown easily from starts or from seeds. Tulip bulbs are one of my favorites, and as an added bonus they are a perennial (they come back every year) that multiplies over time! You can grow them in pots indoors, then save the bulbs to plant outside in the fall. By next spring, you’ll have beautiful tulips to enjoy in your garden.
4. Go for a drive to enjoy the blossoms.
Everything comes alive in the spring, and I love watching the trees and gardens leaf out and bloom. Even if you are unable to get out and go for a walk, taking a drive to drink in the signs of life after a long winter can be so refreshing. Load everyone up with some snacks and a drink for the ride, and enjoy the beautiful sights of springtime.
5. Watch a movie.
Movies are always an easy, low-energy option. Why not celebrate the arrival of spring with a spring-like movie? For younger kids (or older kids!), movies like Peter Rabbit, The Secret Garden, Bambi, or Winnie the Pooh are great choices. Older kids might enjoy Miss Potter, Sound of Music, or My Girl.
6. Have a (contained) Easter Egg Hunt.
Easter egg hunts are the classic springtime activity, but let’s be honest: they take considerable energy. For a lower-energy version, here are a couple of ideas:
Confine the hunt to just one room of the house. Take a few moments to hide eggs in that space, and then allow your child to search for them while you sit by and watch.
Play “Hot or Cold” with Easter eggs. Take turns hiding an egg somewhere in the same room. The person hiding the egg can indicate whether the seeker is “hot” (getting closer to the egg) or “cold” (farther away). The beauty of this is that the person hiding the egg can mostly stay stationary on a couch or in bed.
Make “activity eggs:” rather than filling the eggs with candy or trinkets, add a little slip of paper with an activity that the seeker has to do. It could be hopping on one foot, flapping their wings like a bird, singing a song, etc. For older children, the papers could have questions instead, either about themselves or to test their knowledge of other family members. For example, “What is Dad’s favorite color?” or “What do you want to be when you grow up?” Either way, you will need to expend just a little energy to create the activities, but you can simply watch after that. And there will be plenty to keep your children occupied!
7. Create an indoor petting zoo.
My children love their stuffed animals, and if your house is anything like mine, it’s likely overflowing with them. For a fun indoor activity, invite your kids to create a small petting zoo. They can arrange their stuffed animals any way they like: by species, by size, etc. Have them set up exhibits with all of their favorite animals, and then give you a tour. Ask them to tell you a little bit about each animal: what they eat, where they can be found, any particular personality quirks… Chances are they have a backstory for every stuffed animal in their collection!
If mobility is an issue, you can have them set up the zoo on the end of your bed or in your room. If that’s not possible, invite them to create a “documentary” and shoot a video tour of their zoo on a phone or camera to share with you.
8. Put together a puzzle.
Rain is an inevitable part of springtime, so why not take advantage of a day indoors to work on a puzzle together? If you don’t have one on hand, they can be purchased inexpensively from many stores. Some libraries also have puzzles (and board games) that can be checked out and returned. Or hold a “puzzle swap” with friends or family members.
If you are limited to your bed, smaller puzzles can be put together on a tray or a piece of wood that can easily be moved when you are finished.
9. Have a paper airplane contest.
For some reason, springtime always makes me think of the sky. It could be the clear blue skies with fluffy clouds, or the birds flying overhead, or the colorful kites that suddenly pop up here and there on a sunny day. Whatever the reason, why not translate this love of skies to a fun family activity?
Paper airplanes come in all shapes and sizes, and can be made by young children up through adults. Spend a little time making your own creations, and then have a contest! Prop a hula hoop up and see who can fly their plane through the center. Line up on the edge of the bed and measure to see whose airplane flies farthest. Mark targets on the wall or floor, and see how close you can come to landing on them. There are countless ways to compete with paper airplanes, and most of them can be done from the couch or bed.
10. Make a special spring snack.
Whether you’re going for a ride to scout spring blossoms, curling up with a movie, or just enjoying a rainy day indoors, why not make snack time something special? An easy snack that’s sure to please is a spring-themed “Rabbit Trail Mix.”
Let each person create their own custom mix using simple ingredients: fish crackers, jelly beans, pretzels, mini marshmallows, raisins, dried fruit, nuts, etc. Your child will love having the freedom to pick and choose what goes into their snack, and they can easily prepare it themselves by scooping a spoonful of each ingredient from a bowl, or pouring from a package. For added fun, you could serve the snacks in orange paper “carrot cones.”
What are your favorite low-energy spring activities? Feel free to share in the comments below!
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.
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.
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!
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.
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.
Parenting with chronic illness–oof, am I right? Parenting at the best of times requires so much of us. And, to be honest, sometimes I just don’t have much to give. Of all the struggles that have come in my health journey, this probably tops the list. I often feel I’m missing out on family time, and I always feel guilty.
When my kids come to me and ask me to do something with them, I often feel an inward groan (which also makes me feel guilty!). I love my kids and I love spending time with them, but on the days when I’m struggling just to stay upright, it feels overwhelming to consider finding an activity to do with them.
If your kids are anything like mine, they love to hear stories about the past and to see pictures of themselves. My kids even enjoy seeing pictures from my college days, or from when my husband and I were first married. Family history is important to them, and I think it helps them feel grounded and secure.
They love to pull out the photo albums, wrap up in a blanket, and lose themselves in the pictures of the past. And let’s be honest, this is a low-expenditure activity! You can join them by sitting on the couch, or even lying down in bed while they look at pictures next to you. If your hands are painful or weak, let your child hold the book and turn the pages.
Family movies are a great option, too. Load up the videos, curl up, and enjoy the trip down memory lane with your child!
2. Drink hot chocolate or tea by a fire
On a cold winter’s day, is there anything cozier than curling up by a fire? And, let’s be honest, hot chocolate is one of those indulgent treats that just makes everything better. Or, if you are a tea or coffee drinker, that’s fine too!
My kids live for a cozy fire. Unfortunately, we don’t have a fireplace in our house. Instead, we’ve found some work-arounds: we have a small space heater that looks like a fireplace. My husband and I have a wall-mounted electric fireplace in our room. And we also have the ability to load up a “fireplace” on streaming services and have the appearance of a roaring fire flickering on our TV screen. None of these are quite like the real thing, I’ll admit. But on a cold winter’s day, they’re an easy way to spend time with my kids without needing much energy. We can curl up in blankets, watch the flickering flames, and sip warm drinks.
3. Window Snowman Contest
Speaking of snowy days, is there anything kids love more than playing in the snow? If you live in an area that gets a good amount of the stuff (and if your kids have as much boundless energy as mine), it might be a good idea to send them out into the great outdoors! Challenge them to make their own snowman–large or small–using any materials they like. They could use the traditional hats, scarves, and carrot noses. Or they could find whole cloves, rocks, crayons, or other materials to bring their snowman to life. Just make sure they build them within sight of a window you can easily access. Then, when the snowmen are built, take a minute to observe them from the window and choose a winner. You could even assign different categories, such as Best Construction, Largest Snowman, Most Creative Use of Props, Most Personality, or Funniest Snowman. Your kids will have expended some of their energy, and you won’t have spent much of your own!
4. Play a simple game
Brain fog is no joke. And board games like Monopoly or Settlers of Catan are not only mentally involved, they last for-e-ver. While my kids typically prefer more conventional board games, some days I just don’t have it in me. If you feel the same, opt for simple games. Tic Tac Toe, Hangman, and Mad Libs are perennial favorites that don’t require much of you. They can even be played while you are lying down, if needed. If you struggle to write or use your hands, ask your child to move the pieces for you. If you have an older child, they can write for you while playing Hangman or Mad Libs.
These games are also great on the go. If you spend a lot of time in waiting rooms or in the hospital, they’re excellent time-passers (and fun for adults, even if you don’t have your kids with you).
5. Build a blanket fort
Who doesn’t love curling up in a blanket fort? There’s no better place for laying low, resting, reading a book, or just being together. If you’re up for it, work with your child to create the perfect, cozy blanket fort. Make it as big as you’d like, and fill it with blankets, pillows, flashlights, or fairy lights.
If you just don’t have the steam, challenge your kids to build it for you. Even young children can usually put together a small fort. Talk them through the basics, or show them how to drape blankets over a table top. When they’re finished, join them inside to curl up and snuggle. Who knows, they may fall asleep before you do!
6. Read together
Oh, books. It seems one of my kids always has their nose stuck in a book, and I wouldn’t have it any other way. As energy expenditure goes, reading has one of the lowest energy requirements out there. Even so, it can be difficult on your bad days.
If your child knows how to read, invite them to read aloud to you. It can be a simple book they know well, or a new book you read together for the first time. If you’re feeling up to it, you can take turns alternating reading with them. But if you need to rest and listen, that’s OK too! If your child is not yet reading, you can still invite them to “read” to you. Ask them to tell you what’s happening in the pictures on the page. You’ll no doubt be laughing by the end of their story!
If your child is a little older and has outgrown children’s books, have a throwback day. Ask them to pull out all the books they loved when they were little, and read them to you. For even more fun, have them hold up the pictures and read the stories like a teacher, or like you no doubt did when they were small. You’ll all enjoy the trip down memory lane!
If there is something that especially interests your child, consider a book run to the library to find books on that topic. A library run will require some energy expenditure, but many libraries offer hold programs, where library staff pull all the books you requested and have them ready and waiting to be picked up. This saves you energy traipsing around the library in search of the perfect book. Some libraries even offer to bring the books to your car. As unfortunate as the pandemic has been, it’s put in place some services that are incredibly helpful to those of us living with chronic illnesses. Take advantage of these, and save your energy for the things that matter more!
6. Listen to an audiobook
Sometimes reading the book out loud, coaching your child through unfamiliar words, or even holding a book in your hand is just too difficult. On those days, consider listening to an audiobook with your child. There are countless services for borrowing or buying audiobooks, and many of them are free. Check with your local library to see if they offer online services such as Hoopla.
Listening to an audiobook also pairs well with other activities if needed, such as curling up in a blanket fort or sipping hot drinks by the fire.
7. Have a puppet show
Kids love to put on a good show, don’t they? If you have creative kids and some puppets or stuffed animals around, why not ask them to put on a show for you? They don’t need a fancy puppet theatre, either. A table or ironing board covered in a blanket makes a perfect stage. They can add props if they’d like, or just act out scenes with their characters. If your kids are a little older and like to be creative, they can make their own puppets form socks and bits and pieces from around the house.
Or, if puppets aren’t really their thing, ask your kids to write a short skit that they can act out for you. They’ll no doubt love coming up with a set, characters, and rehearsing their scenes for the “big show.” And the beauty of all of these options is it fills the time for your kids, and you can enjoy it from the comfort of the couch or your bed.
8. Finger dance party
Have you ever heard of finger dancing? I used to do it all the time when my kids were really little. All you have to do is use two of your fingers as though they were legs, and make them “walk,” “kick,” and “dance” on any surface.
My kids absolutely love dance parties, and on good days, I can enjoy them with them. But dancing takes so much energy! So on days when energy reserves are running low, but dance fever is at a high, why not have a finger dance party? Play your kids’ favorite songs, whether they’re kids’ songs, pop songs, or anything else. Let’s be honest, watching fingers dance is just a little ridiculous, so it pairs well with funny songs. One of our favorites is the Chipmunks’ rendition of “Three Little Birds.” Regardless of the songs you pick, you’ll no doubt all be laughing before long.
9. Go for a drive
Winter has its own kind of beauty, doesn’t it? A walk may be prohibitive because of symptoms and the cold. But a drive is a great way to get out of the house and enjoy the season.
This is one of our family’s favorite activities leading up to Christmas. We frequently go for drives through our city to spot Christmas lights and vote on our favorites. My kids especially love to make the drive in pajamas with a warm drink. But even after the Christmas season has passed, a leisurely drive to take in the snowy sights can be fun and relaxing. To make it even more fun for your kids, you could play winter bingo and challenge them to spot a series of winter-related things on the drive, such as snowmen, ploughs, or lingering Christmas decorations.
10. Try a new take-out food
This idea gets double points, in that it’s low energy but also saves on meal prep! For a new experience, try ordering take-out from a local restaurant you’ve never tried. Be as exotic as possible, and encourage your kids to try the new foods.
If you are ordering from an ethnic restaurant, you could even spend a few minutes talking about that country. Or research it with books from your library run. And who knows, you may find a new family favorite!
It’s Valentines’ Day. Couples everywhere are flocking to restaurants and coffeeshops and romantic places. Love is in the air!
But love, and relationships in general, can be a little complicated if you live with chronic illness or a medical condition. Between physical limitations, flare-ups, medication adjustments, and doctor visits, it can seem like there’s not much room for romance.
This year my husband and I will celebrate seventeen years of marriage together. Many of those years have been impacted by my health. In fact, sometimes it feels as though our entire lives revolve around my symptoms. As more and more of our schedule is devoted to appointments and conversations are dominated by medical discussions, sometimes I feel more like his patient than his wife.
I have to imagine I’m not alone.
When you live with chronic illness, you learn to be adaptive. Best laid plans don’t always work out. For example, some years ago my husband and I went out of town for a weekend away. We don’t get away without our kids often, but we live for our getaways. We had tickets for a concert, and planned to spend some time enjoying the big city in which we were staying. I was at the height of a flare-up, and in addition to my usual fatigue and low energy, I was dependent on a cane to get around. On the night of the concert, it was cold and rainy and miserable. We arrived in town just in time for the show, with no time to stop for dinner. We parked several blocks from the venue and hurried through the sleet to our show. It was a great time! We had good seats, and we thoroughly enjoyed the concert. When it let out just before ten o’clock, we tumbled back out into the cold weather. I waited at the venue doors while my husband, graciously, brought the car. We returned to our hotel in hopes of finding the restaurant open. It was not. For the next two hours, we traipsed from one restaurant to another all across town. Every one had closed. Finally, exhausted and starving, we stumbled into a convenience store. We grabbed a handful of granola bars and mixed nuts and drinks. That night, at almost midnight, we sat on the edge of our hotel bed eating a late picnic of snacks. It’s still a memory that makes us laugh.
The next day, we had plans to visit an IKEA–a real treat, since we don’t have one nearby. While my husband had been excited about the concert, this shopping trip was at the top of the list of things I was anticipating. We parked as close as we could and wandered in. We searched, in vain, for a wheelchair. I was already running low after all of the expenditure of the night before. He asked me whether I could make it through the store on foot. I wasn’t about to give up on IKEA! So we went on. As we wound through the store, I became more and more depleted. We stopped in just about every room display to sit and rest. We joked that we were trying out all of the furniture, just in case. I remember almost nothing from the day, just the feeling that I had never imagined IKEA could be so enormous. It felt as though we would never get to the end of the route through the building. We finally reached the doors, and he again pulled up the car. I sat slumped in the front seat. We’d had many other plans for our time away, and several hours remaining together before we had to get home to our kids. I leaned my head into the car seat and cried. “I can’t do it,” I remember saying. “I just can’t do any more.” We returned home early. I was devastated.
Moments like these are all too common with chronic illness. Cancelled plans, unexpected symptoms… it all takes the wind out of romance sometimes.
But we are learning to adapt. When we are in a bad stretch, we make alternate plans. Recently, my parents offered to take our kids for a couple of days. Normally, this would have been the perfect opportunity to get out on the town and visit some favorite restaurants and events. But I just wasn’t up to it this time. In fact, our one quick trip to a shop for a few things was enough to exhaust me. So we made other plans. We ordered a gluten free charcuterie board from a local shop and enjoyed a picnic date at home. We rented a movie we’ve been wanting to see and curled up on the couch. We lit some candles and enjoyed a quiet dinner at the kitchen counter. It was wonderful.
And then there are the good days, sometimes unexpected. The sun is shining, I have a little more energy, and a space opens up in our schedules. On those days, we try to grab the bikes, or hit the trails, or do something together that we can’t do on the bad days. As my in-laws like to say, we “grab the gusto while we can.” It’s the name of the game with chronic illness. Adapt, adapt, for better or for worse!
I asked my husband one time whether he wished he had a wife who didn’t turn his life upside down. He looked at me as if I were crazy. We’ve had many ups and downs, sure. We’ve sometimes had more cancelled plans than plans that came to fruition. But we’ve also had hours of laughter as he pushed me in a wheelchair–often popping wheelies that made my stomach flip. We’ve had moments at hospital bedsides, whispering to each other about our deepest fears. We’ve had beautiful, healthy days that felt even more blissful because of the reprieve they represented. We’ve known each other at deep levels, in deep needs, through deep fears. In short, we’ve carried each other. We’ve adapted together. We’ve let our love be shaped, even by chronic illness. And it’s far more beautiful as a result.
And that is what love with chronic illness can be.
Sometimes chronic illness throws you a curveball. Maybe it’s a new symptom, or an embarrassing moment of the kind you hope someday you’ll laugh about. Maybe it’s a flare-up or relapse. One thing is for certain, and that is that nothing is ever certain.
After a long stretch of relative wellness, this month threw me one such curveball. I experienced a relapse of a magnitude that I haven’t encountered since I was first sick, and it has landed me squarely on my back.
After an especially difficult day, my teenage son offered to cook supper so that I could rest. I gratefully took him up on the offer and curled myself up on the couch. I closed my eyes and willed my body to recover, which of course never works. He hummed to himself in the kitchen as he sauteed meat and chopped vegetables.
My husband came home from work and sat down at the kitchen counter. My daughter stood at one end of the island, telling a story about her day with animated gestures and laughter. I was missing out.
I took a deep breath and wandered into the kitchen. I picked up a wooden spoon and began to stir the food simmering on the stove as I listened to the conversations. My legs ached, but I couldn’t bring myself to miss out on this little window of family time.
“Wait, Mom,” my son held up a hand. He reached for one of the tall stools tucked under the counter, and set it down in front of the stove. He smiled as I took the seat, then went back to shredding a block of cheese.
From across the room, my husband snapped a picture of us working side by side.
This is what it means to parent with a chronic illness. Sometimes it means missing out, yes. But sometimes it means finding a way to be a part of things. Sometimes it means making lemonade from lemons–or making supper, anyway.