Hello and welcome to episode 1 of the podcast Tips and Tricks on How to be Sick.
I’m Eirenne and I will be your host as we talk about navigating the world as people with chronic illnesses, both physical and mental, disabilities, and the ways in which the world isn’t necessarily designed for us.
In this episode, we’re going to discuss what I call adaptive coping mechanisms and why they’re important for you to have. We all have our ways of coping with stuff that happens to us, whether that is reaching for chocolate (or whatever) when stress levels go up or setting 3 different alarms to make sure you wake up in time for work or school. But when you’ve got chronic illness or disability, that changes how you interact with the world and you may find that you need some specific strategies prepared to make those interactions easier.
What do I mean by that? Well, you could also consider these shortcuts or lifehacks. You’ve seen those late-night infomercials with products that people often decry as being “only for lazy people” right? My favorite is a plastic frame with a hinge that sits in the fridge and is designed to hold a gallon jug of milk or juice or something. Instead of needing to pick the jug up, you can just tip the frame forward on its hinge and pour the liquid into a cup.
I’ve seen so many people say this is just another way to be lazy, but it’s not! You know who that product is designed for? People with disabilities who have trouble picking up a heavy jug of sloshing liquid. That could be people with a tremor in their hands from whatever source that makes their hands shake too much to pour the liquid cleanly. Or someone with an injury to their hand, wrist, arm, shoulder, or even their back that limits how much weight they’re allowed to lift or carry. Or even someone with a condition that is variable from day to day – maybe one day they can pick up the jug, but the next their muscles are too weak, or their joints too unstable to do so safely. For all those people, that kind of device is a way to adapt their environment so that it works for them, not against them. This is the case with a lot of those infomercial products that might seem nonsensical to an able-bodied or minded person, but can be a total game-changer for someone with a disability.
Not every adaptive coping mechanism is something you need to buy special, however! There are plenty of things you probably have in your home now, or that you could pick up from any dollar store, that you can use to make your day to day life less overall work. Sometimes it just takes seeing a new way to use something to help accommodate for abilities that you no longer have the same as you used to.
These are things like using a lever to help open pull-top cans (such as cat food) rather than putting the pressure directly on finger joints – I’ve been using a butter knife, personally. Or keeping a bottle of water next to the bed for urgent hydration – such as when you wake up feeling overheated and parched and you need a drink of water, but you’re feeling dizzy from the dehydration and going to get a glass of water could be dangerous because you might fall or trip over things in your path. Take that one a few steps further and keep a small box of things by the bed that might be needed urgently – pain meds, antacids, emergency inhaler, antihistamines, nausea meds, anxiety meds, medicated creams or lotions, etc. – so that you don’t need to get out of bed to go get them if you are sick or you are trying to sleep. If you are a crafty type of person, you can decorate the box to make it look prettier or make it a better fit to your decor.
How about switching to using a bigger purse or using a backpack to enable you to carry all the things you need to without using both of your hands, if you need one or more of them to manipulate mobility aids such as canes, crutches, or a wheelchair. What about getting a phone case on a lanyard (or an arm holster, like runners use for holding their cell phones or portable media devices) so that you can keep your phone with you – that way you always have a way to call for help if you fall or get injured or stuck somewhere when you are home alone or are unable to shout for help. I know at least 1 person who put a special collar on her dog that had a button on it that connected to a cell phone and would call 911 if she pressed it, and then trained the dog to lay down next to her head if she fell or cried for help.
Adaptive coping mechanisms are all about the little ways you can make life easier to live. Whether that means making things more comfortable or making things safer, you adapt your life to help cope with the changes you are facing as a result of your illnesses or disabilities. Just because you may not be able to do all the things you used to do, in the exact ways you used to do them, doesn’t mean you can’t do any of them in any fashion. It’s hard to learn new ways of approaching old activities, and sometimes the answer really is “that’s not a thing I do anymore” but you owe it to yourself to really consider if there are things you can adapt to allow you to keep the joy of things you’ve had in your life. You might be surprised at all the things you can still do with just a few tweaks here and there.
But more than that, there are a million little ways you can help keep some of your independence in the face of shifting ability levels. Maybe you can’t do all of it on your own anymore, and maybe you do need to let people help you do stuff you used to be just fine handling yourself. That’s a hard thing to accept for a lot of people – it was for me. I was always the caretaker and the one that picked up the slack when others had problems, so it’s still hard for me to ask people for help, though I work every day on getting better at it. I valued and still value my independence, even though I’ve learned to accept that I can’t have as much of it as I used to. Little changes and adjustments to my expectations go a long way toward helping me feel like I’m more in control than out of it. And when you’re facing a shift in your world like a new chronic illness diagnosis or a new onset disability, holding onto your independence wherever reasonable can feel like holding onto who you are.
A lot of the tips and tricks I will share in this podcast will fall into the category of adaptive coping mechanisms. There will also be tips that you are likely to hear from doctors or therapists, and tricks that can make it easier to talk to doctors and therapists. In future episodes I’ll talk to other people with disabilities about the kinds of things they’ve learned or come up with themselves about how to manage the issues their specific disabilities present.
Please, continue to join me here every month for a different topic and set of tips and tricks. You can find us on the web at http://www.sicktipsandtricks.com, on Twitter @HowToBeSickTips, and on Facebook at SickTipsAndTricks. As always, a full transcript of this and every episode is available on our website.
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