Tips on Managing the “Bad Days” of Chronic Illness

Bad Day Ice Cream

How do I deal with a bad day? I thought I’d share a bit, being somewhat of a chronic illness veteran at this point. 

Step one: Recognize it’s a bad day.

You wake up and find that you’re weak without even having done anything. Sitting up leaves you out of breath. Any attempt at movement is met with pain from every involved muscle and joint. You’re probably having a “bad day”!

  • Do NOT succumb to the temptation of, “I feel bad today so of course I’m going to feel this bad tomorrow and the next day and…” because most of the time, that’s just not true.
  • Do NOT start complaining about how inconvenient this is. Your body doesn’t care about convenience, it cares about survival, and your consequence for indulging such thoughts will be the release of stress hormones that will only make you feel worse.
  • Do NOT decide to force your way through the day until your body succumbs to your almighty will. It won’t, and chances are you’re going to damage something or another, pass out, or any number of unfortunate things.
  • But DO remember that bad days happen with any illness, and we can learn to let them come and go.

Step two: Groom *appropriately.*

You’re not exactly going out for a night on the town, but it’s not like you’re never going to see the light of day again, either! At some point you may gain enough energy to sit up and brush your teeth. But while you’re in there, why stop at that? Run a brush through your hair if you can bear it, maybe even use some hairspray, gel, or dry shampoo to fluff things up. You probably won’t be getting a bath that day (and science is constantly telling us we actually bathe too much, anyway), but if you’re missing the scent of your favourite soap, top things off with a quick spritz of a lightly-scented body spray, perfume, or cologne. For most people, little pick-me-ups can help with self-esteem, even if no one else is going to see you.

  • Do NOT feel bad if you can’t even make it to brush your teeth; no spoonie likes to admit it, but let’s face it: It happens. Your teeth won’t fall out, I promise. (My extra sympathies to those living with trigeminal neuralgia or other nerve-related head and facial pain.)
  • But DO at least one small thing to help your self-esteem, whether it’s your hair, changing into your favourite pajamas, painting your nails, wearing your favourite socks, or…even wear a scarf or hat indoors! It’s your “bad day,” you’ll do what you want!

Step three: Plan to do activities that require little-to-no effort.

Sometimes the main goal is distraction. Yes, it is tempting to lie there and try to block out the world, and meditation can be nice, but other times your thoughts can get the best of you and actually intensify your discomfort. All you feel is sickness sickness sickness, and the silence does nothing to help deal with it. So what can you do when you’re too sick to handle any social interaction, but also too sick to lie still without any distraction? Let’s find some ideas.

  • Music. If you need something angry, there’s aggressive music; if you need something to calm down, there are soothing melodies and vocals; if you’re slipping into a sudden downward spiral, there is music to remind you of hope. There’s also the radio. Sometimes music can hurt your ears, but that doesn’t always have to stop you: The usual culprit of this is the frequency of the sound, so by adding a dulling effect using a combination of your music device’s sound settings and and some (soft!) earplugs, you may still be able to listen and enjoy the benefits without causing harm to your overstimulated nervous system. There are even noise-canceling headphones that can help!
  • Online galleries like InstagramPinterest, or Flickr
  • Twitter has a huge community for people living with #chronicillness, all communicating in brainfog-friendly 140 characters or less.
  • Huffington Post, FlipboardIssuuBuzzFeed, etc. Maybe you even got lost on BuzzFeed already, reading that shower link.
  • YouTube, NetflixAmazon Instant Video, Fandor, etc.
  • It takes very few muscles to maneuver a computer mouse, but even fewer to work a touchscreen. Can’t use a tablet, or can’t afford one? Try a smaller, cheap smartphone, and just use your home wireless network to connect to the internet! You are not required to buy or use a cellphone network plan when using a smartphone.
  • Online games. Sites like Pogo.com let you play popular games online like Yahtzee, Hearts, Monopoly, etc, single player or with others in the community. They have dozens of multiplayer games so your friends can even join the site and meet you in the game rooms.
  • Audiobooks via Audible.com
  • Digital books via Amazon KindleYou don’t need a Kindle to read them!
  • Television. Unless you have DVR service, I would personally recommend sticking to programs that are short, have commercials, and have comedy. The shortness of the show means you’re more likely to actually follow what’s going on, the commercials will allow your brain a break every seven or so minutes, and comedy.. well, that’s should be a no-brainer! The newest thing I did was upgrade to a Smart TV, which allows you to connect to your favourite video services (like the ones mentioned above) straight from your television, with no additional hardware or hassle. If they’re both Samsung devices, you can even control it with your smartphone.
  • Do NOT get upset at your brain’s inability to read, comprehend, remember, handle sound/light, or whathaveyou. If a certain ability is beyond your capabilities on that particular day, move on, to something you CAN do. Nourishing negative thoughts about things you cannot control will only bring you further into poor health, and you especially don’t need that on a bad day.
  • But DO practice “switching,” which is the art of moving from activity to activity, interchangeable with each other and with rest, to prevent exacerbating your symptoms. It’s impossible to predict what will or will not get you ill at any given time, so the very best you can do is learn to go with the flow.

Eventually, even with accommodation, any and all activity will get me ill for one reason or another. The worst days are those when I cannot do any of these. It breaks my heart to think that there are many sufferers who spend every day of their life in that state, and it’s even scarier to think that without warning, I could become one of them. I doubt there’d be many of those individuals who would be able to read my blog, but if a carer happens upon this entry, I’d suggest this site, Surviving Severe ME, which has many more tips and suggestions for helping someone with extremely severe myalgic encephalomyelitis get the most out of life and “bad days.” It also has suggestions that may be beneficial for those not so exceedingly ill, but who are still wheelchair and/or bedbound.

a rainbow at night

October 2015: Updated!
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