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 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.
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.
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.
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.
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!