If you’ve lived with chronic illness or disability for any length of time, you’ve doubtless developed work-arounds and habits that help you navigate the challenges. They’ve likely become your new “normal,” but to an outsider, they might seem a little strange. Here are some of the things that I do regularly that now seem normal to me.
1. Take a daily nap.
I don’t know too many adults who carve out time for a daily nap (as much as they may wish they could). But chronic, debilitating fatigue means that if I don’t make rest a priority, there can be a greater crash waiting for me in the days that follow. I keep a fairly strict routine: part-time work, daily nap (usually 1-2 hours), evening with family and any social commitments. As long as things stay relatively balanced, I can usually stave off a major breakdown.
This can pose a challenge during unusual times, such as holidays or travel. Still, even during time of increased social time, activity, or celebration, I’ve found it’s essential to guard my nap time. When we get together with family or friends, we plan for times that leave me space to rest. When we travel, our sight-seeing itinerary includes a mid-day break. My husband and kids know to travel with books or quiet activities that can help them pass the time when they rest, and I’ve learned (or am trying to learn, anyway) to let go of the guilt I feel dictating our schedule and/or missing out on some of the fun. But to continue participating in the rest of the activities in store, it’s just something that I have to do.
2. Research restaurants.
Eating out used to be something we enjoyed doing from time to time on the fly. These days, unless we’re spontaneously popping into a restaurant where I’ve eaten before, planning a restaurant trip takes about as much research as buying a new car or a new appliance! My celiac disease means I have to be extremely careful about what and where I eat. I rely on apps such as Find Me Gluten Free where I can read ratings and reviews from other people with celiac disease, or recommendations from fellow celiac friends. Even with good reviews, though, I often have to take extra precautions. I’ve been known to call the restaurant ahead of time and ask to speak to a manager or chef to assess the safety of their prep space, to ask a lot of questions of the server, or to request that ingredients be double checked for me. I hate feeling “high-maintenance,” and sometimes miss the ability to go places on the fly, but it’s all just part of this chronic illness journey. On the other hand, when I do find a place that’s safe for me, I want to shout it from the rooftops and tell all my friends! I’m a loyal customer, and default to the “safe places” when I find them. Sometimes it’s nice to have a sure thing to fall back on.
3. Work part-time.
I already alluded to this previously, but for me, part-time work is non-negotiable. I’ve worked all different kinds of hours on all different kinds of shifts in the past, but since my illness, I just have a limited physical budget. If all of my energy (emotional, physical, and mental) goes to work, there’s just nothing left over for my family and friends and social engagements. To be honest, even working part-time it’s sometimes a stretch to have enough, and in difficult seasons even the few hours I work land me in bed or on the couch for the rest of the evening or all weekend. I’m young and would appear to be in my prime. Sometimes it’s frustrating that I can “only” work part-time. On the other hand, I know many in the chronic illness community who would love to be able to work as much as part-time! We all have our limits, and that is the bottom line in living with chronic illness: know your limits, and respect them. There’s no shame or guilt. Your family and friends need as much of you as they can get, so it’s worth budgeting wisely and working what you’re capable of working, and nothing more.
4. Meal plan.
I’ve talked about my practice of meal planning in another post, but it bears mentioning again. For me, it’s a lifeline. Meal planning means I can choose healthy, easy recipes in advance and know I have all of the ingredients on hand. It means, on a good day, that I can work ahead and prep foods to keep in the fridge or freezer for a later date (so we can have healthy, home cooked food even on bad flare days). It means I can limit my grocery trips and do all of my shopping, for the most part, at one time. The less time in the store, the less money and energy I spend. Seriously, if you haven’t thought about meal planning, I can’t recommend it enough! There are a dozen ways to do it, so experiment and find a way that suits the individual needs of you and your family.
5. Pack my own food.
If you yourself live with celiac disease, or know someone who does, you’re probably familiar with the sense of panic that creeps in when we fear there may not be “safe” food available. Most celiacs I know travel with more food than they could ever hope to eat, just for this reason. While I try not to go overboard, I do always plan ahead. If we’re traveling or out with friends, I usually have a protein bar or small celiac-safe meal tucked in my bag. When we get together with friends or family, or when we have a carry-in at work, I pack my own lunch. Sometimes friends will offer to cook food for me, with the very best of intentions. But it can be so complicated to explain that every pot and utensil has to be gluten free, every spice and condiment, and every ingredient. It’s a lot of work, and a lot of potential for cross-contamination. So to be safe, I always bring my own. The people in my life are no longer offended by this, they’ve learned that it’s just what it takes for me to be safe and not hungry, and to be able to participate socially with whatever is going on!
6. Wear compression clothing.
I have to be honest, I never would have consider compression clothing if it hadn’t been recommended by my neurologist. I am always tachycardic, struggle to stand for long periods of time, and often get dizzy. I should have connected the dots myself, but I’m glad someone at least did it for me. Compression was a game-changer.
I have a supply of several different items that I use depending on my symptoms any particular day (and my outfit, if I’m honest. We all want to look good). I use knee-high compression socks, compression leggings, compression tights, and/or an abdominal binder. They all take some getting used to, but I’ve found they really do help reduce my dizziness and make it a little easier to stand and walk around. Plus, there are some really fun compression socks out there these days!
7. Always travel with a mobility device.
Last, but not least, I always pack an arsenal of mobility devices when we are heading out of town. At the very least, I bring my folding cane, which is easy to tuck into a backpack or just keep in the car. If I’m in a bad stretch, I pack my regular cane. If we anticipate hiking or being outdoors on uneven terrain, I take my walking sticks. And if we’re going to be gone for more than a couple of days, anticipate visiting museums or zoos walking long distances, or if I’m in a particularly bad stretch, I take my wheelchair. All of them are relatively small and portable, and not difficult to fit in the car. If we fly or travel by boat, they can usually be checked or tucked into my luggage. To be honest, this is a lesson I learned the hard way (sadly, more than once–I’m a slow learner!). Several times I was caught out without a cane, when I really could have relied on it. Travel tends to translate into a flare for me, and it helps to have something on hand just in case. Another time we waited 45 minutes and paid a fee to rent a wheelchair at a museum, because I was flaring (thank you, travel!) and couldn’t make it through the outing without it. I kicked myself for keeping my extended family waiting for so long and having to pay for something I owned and could have brought. So lesson (finally) learned: always take a mobility device along, just in case. And if you don’t have to use it, call it a win!
What are some of the “unusual” things you do? I’d love to hear about them in the comments!
4 responses to “Unusual Habits that Now Seem Normal”
What a great post! I had to think for a minute to remember what it “normal” to others. I, thankfully, no longer require regular naps and compression tights, but am hyper-focused on food and beauty/home products and type of toxic exposure. I drink Trioral every day and eat put salt on everything to keep my BP from dropping too low. I also often walk with stiff legs because for so long I experienced such intense pain from any muscle flexation.
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I’m glad you’ve found your own work-arounds and ways to cope! It really does seem hard to fathom what “normal” used to be, but as long as it gets us through the day, we do what we have to do! Thanks so much for sharing your experience.
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Fantastic post. We get so used to doing certain things, don’t we? I also have coeliac. I often hear about people going out and there being no safe food available and I always suggest that they need to get into the habit of taking food wherever they go. My bag is normally packed with more food than I can eat, but I like to cover all eventualities.
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Yes! I was just commenting to my sister-in-law this weekend that I get almost panicky at the prospect of not having safe food when I need it, and I can’t imagine traveling from home without something on hand. I think most of us carry a secret stash of emergency food–especially if we’ve had the unfortunate experience of being caught out without food!