Episode 02 — Sleep, how to do it once chronic illness changes everything

Hello and welcome to episode 2 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 a thing we all have to do, but that some of us have real trouble with once our chronic illnesses or disabilities change everything: sleeping.

There are studies that suggest the average person falls asleep within 7 minutes of laying down and closing their eyes; that is, they enter the first stage of sleep, the alpha phase, which is a light, dreamy feeling that people can also slip into while meditating, daydreaming, or praying.

But what if that’s not you? What if, instead, you have pain, discomfort, racing thoughts, anxiety symptoms, or a brain that just won’t shut off? Let’s talk about some basic and not-so-basic tips about helping you get to sleep, and see if we can make the process just a little easier. I’ll start with the big, common advice and then get smaller and more specific.

Tip #1 – Reduce the stuff that interferes with sleep. This might be drinking stuff with caffeine within 6-8 hours of bedtime, looking at bright screens within an hour of bedtime, or exercising within 2-3 hours of bedtime. Caffeine is a stimulant, and a lot of us with lower energy reserves thanks to our illnesses or a higher than average energy output because of our disabilities use it to help boost us along – and there’s nothing wrong with that! But it can also raise your heart rate and cause anxiety to flare up, so it’s best to avoid it close to the time you want to sleep. Common wisdom says not to drink caffeinated things after your midday meal.

Bright screens inhibit the production of melatonin in your brain, which makes it harder to go to sleep. Specifically, it’s the blue waves in the light that screw things up. Common wisdom says to avoid screens entirely for an hour before sleeping, but that’s not always possible or reasonable for those of us for whom screen time is our major (or only) connection to others, our way to read books, listen to calming music, or endlessly scroll through Tumblr to wind down. So, if your device doesn’t have a built in blue light screen, such as the type you’ll find on Kindle Fire devices, you can generally find free apps for your mobile devices that will filter the light and tint the screen a sort of red or amber; just search for “blue light screen.” [Android] [iOS] There are also similar programs for PC screens, if that is more your speed than mobile devices.

Exercising before bed isn’t a great idea for a couple different reasons. Obviously, it gets your heart rate up and your blood pumping, which is a signal to your body to rev up and keep going, which can be a bad thing if you’re trying to settle down and sleep. It also raises your body temperature, and that also inhibits sleep for a lot of people. A healthy, average adult, with typical sleep patterns may not notice a negative impact on sleep from exercising right before bed, but having chronic illnesses can change the equation enough to make it better to err on the side of caution, and get your exercise in earlier in the day when possible.

Tip #2 – Make your sleeping area as conducive to sleep as you can. This includes things like temperature regulation, humidity regulation, reducing excess light and noise, and making the sleeping surface as comfortable and supportive as you need to.

Humans sleep best in cool (not cold) environments. Our bodies naturally have a drop in temperature when we sleep, and if the area is too hot it can interfere with that, making sleep restless and uncomfortable and ultimately not restful. Do what you need to in order to regulate the temperature where you sleep, whether by lowering the thermostat a few degrees, turning on a fan to help circulate the air, or adding/removing blankets from the bed to make it more appropriate to the lower temperature.

Related to temperature is humidity. People who live in areas further north, where it gets colder in the winter, might find that the air gets dry when it is particularly cold, which can lead to dry throat and nasal passages, which in turn can lead to irritation, sore throat, dry, cracked lips, and nosebleed. If you live in a place where the air is naturally drier, you are probably more accustomed to it than those who live in a place with a higher average humidity, and you may not find the same negative results in the dry air. For those who do, however, a small, single room, cool mist humidifier can make a big difference, allowing easier sleep and more comfortable waking. Plus, your cats will have less static electricity sparking from them when you pet them, which will make everyone happier. Otherwise, a good, sensitive skin-friendly lotion and some lip balm will help keep your skin and lips hydrated in a low humidity space.

It may seem obvious, but reducing light and noise when trying to sleep is important. There are probably more light leaks in and around your sleeping area than you expect, from bits around windows and doors, to passive LED indicators on electronic devices, to blinking notification lights on mobile devices. The same goes with sound; from the noise of other people outside or in adjacent living spaces, to pets playing, major appliances like refrigerators and dishwashers running, to the notification sounds on your mobile devices.

If you can, get lined curtains that will block out light, or ones with a tight weave of opaque fabric if not. If you can’t get some curtains right now, a blanket with some strong double-sided tape can work just as well. If you aren’t safe or able to climb to where your window is, and you don’t have help to fix the issue, an eye mask or blindfold can be a good option, as well. I have personally used both <$10 ones ordered online and ones made from bandannas I picked up for $1 at a big box store.

So what about the other sources of light, LEDs and such? Well, you can unplug them or turn them away from you (though they’ll still be shining light, just not as directly), or you can get tape or stickers to cover the lights. [Lightdims] can be a good option, as they are intended for the purpose and come in various sizes and opacities, but I’ve used plain ol’ electrical tape in the past when an LED was so bright I could read by it.

All right, now let’s talk noise. The curtains or blanket ideas that work for window or door light leaks can also help minimize noise from other people outside your sleeping space, since it’s unlikely you can convince people to be completely quiet when you are trying to sleep (although it’s worth a shot if neighbors are being particularly loud during common sleeping times!).

With pet noises, you might pick up and take away any noise-creating toys when you are going to sleep, such as things with bells, rattles, or crinkly material. If you have small, nocturnal pets such as hamsters or mice, and they have an exercise wheel, make sure it is greased with a pet-safe lubricant if they are kept in the same area where you sleep.

There’s not a lot to be done about large appliance noises, except make sure that regular maintenance is done on them and that they are kept clean, so that they don’t have to work as hard, leading to a quieter overall operation. If you have a dishwasher that is particularly noisy, try to run it before you sleep if you can, so that the sound won’t keep you up.

Like with the eye mask above for uncontrollable light, you can also fall back on a pair of soft earplugs if it’s impossible to get the sounds down to a reasonable level otherwise. Some folks also find that having white noise from a fan or white noise generating app can cover the small sounds that are unavoidable.

Notifications on your mobile device can be both bright and loud, so I encourage you to find the “do not disturb” setting and turn it on when you sleep. If you need to be reachable by phone when you are sleeping, you can set up exceptions to allow calls through, or just calls and messages from specific numbers, while silencing and suppressing your other notifications until you wake up. They will still be there, waiting for you when you pick up your device, but they won’t constantly blink and make ‘bing!’ noises at you while you’re trying to get your rest.

Tip #3 – Pay attention to the tiny details. Anyone can have trouble with the stuff above, chronic illness or no. But some of us who do have chronic illnesses or disabilities (particularly those that cause constant fatigue or increased pain sensitivity) may find we’ve turned into the princess from the “Princess and the Pea” fairy tale, where the tiniest bump under our mattress makes us unable to get comfortable. That ‘pea’ could be a tiny bit of grit that is in the sheets, or even rough or wrinkled sheets themselves.

So invest in good cotton sheets that feel nice to the touch, so that they won’t get too hot by trapping your body heat and will absorb sweat while you sleep, and if they don’t fit your bed tightly enough, get a set or two of [bed clips or sheet suspenders] to help keep them smooth. When you get out of bed, turn and sweep over the sheets to make sure any grit or pet hair is brushed away and the sheets are smooth on the bed, and then at least pull your blankets up to keep the sheets covered during the day, to reduce the effort needed to go to sleep. If you can, get pillow cases that have a fold over the open end, to keep the pillow firmly in place and the case smooth over the pillow, as well. Your pillow should be supportive and kept clean to reduce the dust and mold around your face while you sleep, which makes breathing hard and can cause far worse problems for some people. Wash your bed linens in HOT water at least once a week, to get rid of body oils and sweat and dead skin, as well as any dust, mold, or tiny critters that might be trying to find a home there. (The rest of your laundry can be generally washed in cold water no problem, but sheets & pillow cases & blankets should always be washed in hot water.)

Sleep with a teddy bear. Or a pillow to hug, whichever. This is particularly applicable to folks with shoulder, chest, and back issues who need help keeping those bits in their proper places. If you sleep on your back, try to sleep with your arms down at your sides, in as neutral a position as possible, to reduce stress on your joints and muscles. Side sleepers will benefit the most from a thing like a firm teddy bear or pillow to help with body positioning. If you aren’t inclined to sleep with your top arm stretched down over your side and hip, having something to rest it on in front of you will reduce the stress on your shoulder and back. This will also keep you from twisting your hips and shoulders out of alignment as much, which helps to reduce low and mid back pain.

If you tend to pull your top knee up while you sleep, consider getting a body pillow to allow you to do so without cocking your hips in a way that can make back pain worse, while also cushioning the knee joint and supporting the hip joint. Do you sleep with 1 arm up under your pillow and head? If you have unstable shoulders, try to tense up the muscles once you are in position, to make sure you aren’t hyperextending the joint in the process.

In addition to these tips, pay attention to little things that are even the slightest bit uncomfortable when you are trying to fall asleep. Do you have skin that folds over itself, such as around the thighs, waist, upper arms, and chest (particularly for those with larger breasts)? Run your hand under those areas and smooth out the skin so it’s not folded over as much. Don’t feel bad that you need to do this; everybody has skin folds in different spots, no matter their body size, and they can all be uncomfortable when your body is extra attuned to pain and discomfort. Better rest is always helpful when dealing with life as a chronic illness warrior, so you do whatever you need to do when you are trying to get the best rest you can.

Tip #4 – Eating, or not, near bedtime. These tips are contradictory, and will apply to different groups. Some people find it hard to sleep with a full stomach, while others sleep better with something to eat before sleep. Some people take meds that make them nauseated without food, while others have heart burn if they eat too close to sleep. The most difficult to deal with is the intersection of those two – meds at bedtime that need to be taken with food, but heart burn if you eat. This is a tough one, and no mistake.

If you take medications that need to be taken with food, then you definitely should take them with food, but be judicious about the choice for that snack. Don’t have things like bacon or cheese right before sleep, as they can make it harder to fall asleep. I’d also advise against particularly acidic things like citrus or tomato-heavy things, if you might get some heart burn. A small snack of crackers or a granola bar or a piece of fruit is best. It’s hard to sleep with nausea rolling around in your belly, so avoid it when you can.

If you don’t take meds that need food at the same time, and you are prone to heart burn, avoid eating within a few hours of sleep if possible. Heart burn, or acid reflux, can cause sore throats and exacerbate asthma, so minimize it when you can.

So what do you do if you have both of these? If you have meds you need to take with food AND you are prone to heart burn, I sympathize with you, I’m one of those lucky folks, myself. So what I do is have a small snack (usually a frozen waffle, or a cut up apple or pear) and take my meds, then sit up for 20 minutes after, to give my stomach time to start digesting before I lay down and let gravity interfere with the process. It may take some experimenting to see what is too much or too little for food, but I think you can find the balance in time.

Now that I have my major tips out of the way, we have a special guest this month, here to give us his tips on what to do when you are diagnosed with sleep apnea and need to start using a CPAP machine. Allow me to introduce my husband, Karam!

Hello, I’m Karam. I’m a respiratory therapist, and I have sleep apnea. I sleep with a CPAP, or continuous positive airway pressure device, which is a bedside machine that pressurizes air, which helps keep your airway open and stop periods of apnea. I want to share some tips and tricks I’ve learned about using a CPAP for sleep.

The device I use has a nose mask, but some have masks that cover the nose and mouth. Sizing is very, very important. You want to make sure that your mask creates a good seal without putting too much pressure on your nose or lips. Adjusting your headgear straps is a process; after a handful of years, I can adjust a new set of straps pretty quickly. If you grow facial hair, it’s a good idea to keep up with your shaving, as patchy hair growth can make the mask very uncomfortable. I also recommend that you regularly clean the area where the mask rests, even if you don’t have the energy for much else. Oil and dirt can build up, and having acne breakouts where your mask rests can make you much less inclined to use it.

The air intake pulls in whatever is around the device, so if the air is dry and you have sensitive nasal passages, make sure to keep your water reservoir filled. This is even more important if you use any kind of stored oxygen; medical gases are dry, and should always be used with some sort of humidification.

Finally, for upkeep, make sure to inspect your hose for any sign of leaks, which can be as simple as turning the CPAP on and running a looped thumb and forefinger along the length of the tube. Remember that everything you’re breathing in goes through your filters, so keep them clean, and change them more often if you have pets or a dusty environment. Most masks can be rinsed off safely with a little water. Just make sure to dry your mask by running the CPAP for a minute after rinsing it, to avoid mold.

With some time to adjust, the nose hose doesn’t have to be a monster next to your bed. Remember, it’s way more fun than not breathing.

Thank you, Karam!

If you check the website for the transcript of this episode, you’ll find links to many of the suggest types of products mentioned, as well as Karam’s oft-neglected twitter.

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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