One of my biggest lupus peeves is all the prep time and second-guessing that goes into every single, little activity. When your energy, pain levels and just about everything else fluctuates daily, you have to plan for every possible hitch, delay and problem. I’ve found that this is also one of the toughest aspects of the illness for friends and family to understand – it’s really something that needs to be experienced to fully understand.
The Spoon Theory is a great overview on how carefully lupus patients have to plan their activities and how frustrating it can be on both sides when the unexpected happens (as it often does). For me, it can be an even more wild ride; since I’ll often have random symptoms pop up as well. For example, I’ve had shingles, vertigo and bruised ribs. And while my doctors always have theories as to why the latest illness du jour has appeared, it often falls into the category of “shit happens”.
So for me, having a “shit happens” strategy is super-helpful when it comes to navigating life’s surprises. While the “take each day as it comes” philosophy is great and has it place, having at least a general idea of how to prepare or handle events can keep you from being caught with your pants down – and save yourself a bit of unnecessary stress. In my case, it’s a freelance assignment peppered with red flags – early hours, long commute, a painful hip problem, a heel spur and no recharge time for three weeks (let alone time to see a doc about said hip and foot problems).
Sure, I could have canceled the job – but I decided to push my comfort zone a little. My strategy hinges on several core ideas: enlisting help, prepping ahead of time, recharging when I can and giving myself breaks. Here’s how each idea is playing out so far:
I’ve got to give my Mom a big round of applause (and probably some flowers) for being my hero on this one. Not only does she leave me dinner in the microwave at night, but she even offered to whip up a quick sandwich for me to take along in the morning to keep my energy up during my hour-and-a-half commute. The little things are never truly little.
What you can do: If you live with a parent, child, sibling, roommate and you guys are on friendly terms, see if they’re willing to help you out a bit. Whether it’s reminding you to take your medications, picking up some snacks from the store when you don’t have time to shop or sticking some water in the fridge for you to grab in the morning, simple requests can save you some time and energy. Don’t forget to show your appreciation with a little treat once the storm has blown over.
Prep, prep, prep:
For me, having 10 extra minutes of sleep is more important than having an elaborate breakfast. My stomach doesn’t like food immediately when I wake up anyway, so I tend to eat light in the morning. To make the process even more efficient, I boil an egg the night before. No impatiently waiting for the egg to be finished while watching the clock – it’s just nuke, munch and go. I also do a bag check the night before, making sure that I have my keys, cards, wallet, eye drops, hand sanitizer or anything else I might need in my bag and ready to go. That way, come morning, I know I’m not running back to the house because I forgot something.
What you can do: There are a bunch of foods that you can make the night before and re-heat in the morning: eggs, oatmeal, and sausage are all good options. This can also save you a few bucks if you’re always grabbing breakfast on the go. Do a quick bag check before you go to sleep and make sure that you have everything you’ll need for the next day – it’s likely you’ll be better able to keep track of everything at night (when you’re just groggy) as opposed to the morning (when you’re trying to cook, get dressed and everything else all at the same time).
Recharge When You Can:
For me, recharging can mean several things. It can be actual sleep, making sure I’m eating enough to keep my energy level constant or even just grabbing 5 minutes to close my eyes, breathe deep and relax. While my work day is ranging from 8am to 9pm, there are still plenty of little cracks in which to squeeze recharge time. I recently bought an app for my Ipod Touch that allows me to mix various relaxing sounds together for a peaceful soundtrack to my commute. Snacks are also a big part of my recharging- luckily I can eat at my desk. However, my “snacks” don’t just include food; vitamins also play a role, giving my body little boosts to keep it running smoothly (for me) during the day.
What you can do: I don’t recommend grabbing some zzzz’s on public transportation, but a soothing soundtrack can help you stay mellow. And while napping in any public space has it’s risks, there might be spots where you can grab a quick five if you need to. At one of my past jobs, I would spend my lunch break napping in a hotel lobby near my building. Not the safest activity, but, boy did it help. Vitamins and healthy snacks will keep your body fueled and help you avoid a crazy rollercoaster ride of buzzes and crashes. Breathing exercises are another way to recharge – when we’re tense, we tend to take smaller, more shallow breaths, so open up those lungs and give your bloodstream an oxygen boost.
Give Yourself A Break:
After getting totally stressed out with late buses, and too-tight timetables, I gave in and started taking taxis. Sure, it cost more, but the sanity savings more than made up for it – I had a smoother, faster ride, with plenty of time to grab lunch. Also, my fitness plans were put on hiatus – with a hip problem and definite energy challenges, there’s no way I’m beating myself up about not working out. I know my energy is limited and I’ll conserve what I can to carry me through the day.
What You Can Do: If there’s a way to make your tasks/job/life easier, do it. If doing it every day is too tough or expensive, then set a limit with yourself – at what level of fatigue or pain will you draw the line and take the shortcut? While “toughing it out” has its place, if that shortcut will save you time, energy and avoid stress, it’s not being weak, wimpy or lazy – it’s being smart and putting those saved resources to better activities.
So what strategies do you employ when things get crazy in life?