If you or a loved one is coping with Ehlers-Danlos Syndrome, POTS, ADHD, or a variety of other disorders that affect your sleep, surely you know how frustrating this can be. The amount and quality of the sleep we get affects every part of our lives. If you are one of the million plus people who doesn't get enough sleep, or doesn't get QUALITY sleep, then you understand the frustration that comes along with staring at your ceiling for hours, unable to turn your brain off and just relax.
I have had trouble with sleep that dates back to my being a teenager - it always seems like I've had trouble finding the "off-switch" for my brain, or worse, I'll get sleep that is constantly interrupted. It's infuriating to be completely exhausted, yet unable to fall asleep - and worse, getting a lousy night's sleep doesn't just affect you that very uncomfortable night. Getting lousy sleep (or no sleep at all) worsens almost every symptom and side effect that comes along with chronic illness.
HERE ARE JUST A *FEW* WAYS SLEEP IMPACTS THE CHRONICALLY ILL: (But don't worry - a little further on, I'll help you find solutions to get better rest!)
-Chronic pain intensifies significantly.. Folks who suffer from migraines and other headaches often report that headaches are infinitely more intense when they haven't had enough rest. Musculoskeletal (muscle & bone) joint pain as well as nerve pain pain (like the kind caused by fibromyalgia) also tend to be significantly worse. The very act of laying in a poor sleeping position, on a mattress that is too firm OR too soft or by not properly supporting your neck and joints during sleep will cause a bunch of problems: It can cause or worsen muscle spasms, you can suffer from
dislocations and subluxations and can cause lasting sciatica and numbness, tingling, electrical-type pain and burning in your limbs as well as worsen Reynaud's Syndrome.
-You'll have trouble thinking clearly, focusing, listening to and truly understanding what you're hearing. If you are anything like me - you already suffer from brain-fog, difficulty concentrating and trouble finishing your sentences. The fact that your brain needs solid rest in order to function properly is no secret - we've all tried to make it through work or school after a night of no sleep and if you have children you know EXACTLY how badly your mind functions on very little sleep.
-Your moods not only worsen, but become more unstable. While it's not impossible to still find a reason to smile despite a bad night's rest, it's not surprising that it doesn't take much to ruin that good mood. We've all been there - your body's exhausted, your mind is fuzzy and all it takes is someone to look at you sideways and you snap. When your body and mind don't get enough rest, it's difficult for your logical brain to keep control of your emotions and it's much easier for you to become irritable, confused, argumentative and if this goes on for some time it absolutely leads to depression or symptoms similar to bi-polar disorder. Our bodies are unpredictable enough - the last thing anyone with EDS needs is sudden mood swings.
-Your hormones become out of whack, which affects EVERYTHING. If you've ever dealt with a thyroid disorder, you know first hand how important it is that your hormone levels be correct. When you don't get enough rest, your thyroid can become thrown off and start over OR under-producing the crucial chemicals your brain needs to control things like your body's thermostat - it you find yourself sweating uncontrollably, suffering from headaches around the sinus area when you're not sick or don't typically suffer from headaches, your menstrual cycle can be thrown off and periods skipped entirely and much much more.
-Mast Cell Activation and other hystemine/allergic reactions are more likely to occur.
. While there are still many questions about what causes Mast Cell Activation - it is generally thought to be brought on by a variety of things including reactions to physical triggers such as foods (similar to an allergy), irritants in the environment (such as scented perfumes, soaps, and other body products), insect bites and stings, as well as certain drugs and alcohol (including NSAIDS, antibiotics, radio-graphic dyes as well as a reaction to heat and cold, friction, sunlight, fever, and as an emotional response to stress - but everyone agrees that all of these factors are compounded when you aren't getting enough quality sleep!
If you are a medical Zebra like myself and a believer in "The Spoon Theory" (Click the link to read Christine Miserandino's blog that explains Spoon Theory) - then you know that we already have limited amounts of energy. The most imperative part of re-building that energy is getting rest. So what do you do when counting sheep isn't cutting it and the Benedryl isn't working anymore?I have some suggestions that have helped me - and hopefully they'll help you too!
INCREASING NOT JUST THE QUANTITY BUT THE *QUALITY* OF YOUR SLEEP.
It always seems like my WORST nights of sleep happen when I have something to do the next morning - weather it's an early doctor's appointment or a day that my parents aren't around to help take care of my son in the early part of the day - if I have to be up early, inevitably I can't sleep the night before. This means that any time I've got something important to do, I'm going into it after having stayed up all night - not good - so I've found some things that help e get better sleep and more of it. Try some of these tips and then comment to let me know what works (and does 't work) for you!
1) When I know I have to be up early one day, don't wait until the night before to set your alarm. It's a little bit of mind-trickery, but if like me, you find yourself doing the mental math ("If I fall asleep right now, I'll only get six and a half hours of sleep....") - then you're already setting yourself up for failure. If you have a doctor's appointment on Friday at 9am, set your alarm on Monday and don't forget to give the alarm a name - so you don't accidentally forget the appointment. By doing this, you will prevent a little bit of last-minute fretting over how many hours you do and don't have to sleep. It's not a bad idea to turn your alarm clock around so that you can't see what time it is - you can always turn it back around in the morning when you actually NEED to know what time it is.
2) Prep your environment for sleep - in a big way. If you're having trouble sleeping all the time, get a bed time routine and do your best to stick to it, Especially those nights when you know you're working with an early morning. My bedtime routine includes taking the warmest bath I can tolerate (I'm sure many of you have POTS like I do and warm water + warm bathroom = dizziness and syncope.) Make sure your bedroom is dark - turn clocks away from you, put your cell on silent and lay it face down so the glow can't be seen. Turn computer screens and TV's off. Don't watch ANY tv, read text messages, check emails or do ANYTHING else related to electronics in the HOUR before you want to fall asleep. It's impossible to turn your mind off fully if you're anticipating an email response or worrying about something you just read on facebook. By giving yourself an hour of tech-free time every night before bed, you give your brain the chance to focus on the task at hand - getting proper rest.
3) Get comfortable. The ideal position for a good night's rest is lying on your back, with your head slightly elevated by at least one pillow, and a bolster (round pillow - or a regular pillow folded in half) under your knees. This is one time when it's okay to splurge - new sheets, a really comfortable comforter, a great supportive pillow, some aromatherapy candles and black-out curtains for your windows can be a great investment. When I bought my house years ago - I absolutely splurged on my new bedroom. I bought luxurious curtains that blocked out all sunlight (because I did shiftwork, and often had to sleep during daylight hours) - and the high thread-count sheets and the luscious down comforter I bought really made slipping into bed feel like a high-end hotel experience. Pamper yourself, even if your only upgrade is a new pillow!
4) Lower the temperature- if you have a/c unit specifically for your bedroom (and I HIGHLY recommend that you do - it's FAR less expensive to run a window unit A/C in your bedroom that worrying about adjusting the entire house's thermostat to get your bedroom comfortable at night) - then go ahead and turn the temperature in your bedroom down - low - under 70 is preferable. It's more comfortable to sleep in a colder environment, even if you then sleep under a big fluffy pile of blankets. My bedroom temperature is set down at 64 degrees (we have a window A/C unit specifically for our bedroom - and it's the best $35 I've ever spent - we got it at a yard sale!). My quality (and quantity) of sleep has improved IMMENSELY since investing in an A/C unit that is beside our bed. Another option or additional help is a ceiling fan. On top of pumping in icy-cold air, we also have our ceiling fan on high most nights, even when it's snowing outside!
5) Pick clothing that allows you to move freely and isn't overly warm. Some people like to sleep in just a t-shirt, others need "jammie pants" (those fleece fuzzy draw-string style pants) - some people like yoga pants or capris, and others prefer to sleep in the nude- but whatever you choose, make sure you aren't too warm. Another tip is to keep socks or slippers, and a robe beside your bed. If you lower the temperature in your room - and you need to get up during the night or in the morning, you don't want to freeze - so keeping warm clothing at arm's reach is a good suggestion. Many times those long sleeve flannel pajamas that felt great when you first climbed into bed felt warm and fuzzy, but if you wake up in the middle of the night in a pool of sweat, then they weren't an ideal choice. Consider if a pair of socks will help keep your feet warm or if you're the type that likes to stick a foot outside the covers to help regulate your temperature! Whatever is right for you: Dress appropriately!
6) Don't eat right before bed - but don't go to bed hungry either. Have a light snack, like a couple of peanut butter crackers, a handful of grapes or even a small bowl of ice cream about two hours before you plan to head to bed. Try to shy away from carb-heavy snacks, lots of sugar, or caffeine before trying to get to sleep. Make sure your last cup of coffee was at least two hours before your intended bed-time, and if you DO want to have something to drink while you're drifting off to sleep try a decaf tea or warm flavored milk - like chocolate or milk with cinnamon and vanilla extract added. A small warm non-caffinated beverage can help you off to dream-land. Remember to eat at least an hour before bed, especially if you didn't have a big dinner -If your tummy is rumbling with hunger, you're going to have a hard time both falling -any staying- asleep.
7) Always use the restroom before you settle in. You might not FEEL like you need to go - but there's nothing worse than climbing under the covers, focusing on falling asleep and then realizing you sorta need to pee. You'll lay there trying to decide if you'll be fine until morning - struggle over the thoughts that you'll wake up painfully over-full and needing to dash to the rest room, and one way or another, this will disturb your rest.
8) Time your medications wisely. If some of your medications need to be taken in the evening or at night time - how do those medications affect you? Do they make you sleepy? Perfect, those you should take after you've climbed into bed and before you drift off. Do others give you a burst of energy, make you hungry or need to be taken hours before -or after- a meal? Use a pill organizer so you aren't digging around looking for a missing pill bottle. Have a drink ready and by your bed for your night time medication - and another drink standing by for the morning if you need to take medications before you get out of bed.I have noticed that some of the pain medications i'm prescribed can make me jittery - and larger doses tend to keep me awake at night, so I've learned to dial back the dosages or take those hours before I intend to head to sleep. And if you're still having trouble dosing off, consider taking medication that will help ease you to sleep - something like benedryl (this is the ingredient in Nyquil and Tylenol PM that helps make you sleepy) or a more natural choice - Melatonin. 10 mg of Melatonin really helps me fall asleep quickly on nights that I'm having trouble turning off my brain!
Remember - most prescription sleep medications can have a lot of ramifications - from the dangers of mixing them with other medications that can affect your breathing (like pain killers, certain psychiatric medications) - these medications can be habit-forming, they can have effects that last well into the next day (this is especially important if you have an early morning - most prescription sleep aids say right on the bottle "Do not consume this medication unless you have at LEAST 8 hours to dedicate to rest") - regardless of their recommendation, many sleep-aids like ambian and lunestra can leave you feeling groggy, bleary-eyed, unfocused and downright tired well into the next day. Another thing to keep in mind is that prescription sleep aids may force you asleep - but they might not help keep you asleep,so always take these medications for the first time when you have plenty of time to dedicate to sleep, as well as a person to check on you throughout the night to be sure you're not having any kind of negative reaction. Lastly, many of these medications can cause periods of amnesia - some of which last 24 hours or more - so always test these medications when someone is around to make a note of any odd behavior or unusual things that you say or do while under the influence. In general - it's much better if you can find natural ways to get good sleep rather than taking medication.
9) Now this is my favorite secret - and the trick that (for me) works without fail....
Have you ever heard of ASMR?
ASMR stands for "autonomous sensory meridian response" and it describes that pleasant tingling sensation in your scalp and spine - or sometimes gives you goosebumps when you're experiencing something relaxing and wonderful that feels *so* good - like when someone plays with your hair, or gives you a massage. ASMR isn't experienced by everyone - and some people only experience this response to actual physical stimuli - so if you have a spouse, ask them to dedicate fifteen minutes or so before sleep to helping you reach this deeply-relaxing state by gentle tracing letters on your back or lightly running their fingers across your neck and under your hairline - up and down your arms, on the palms of your hands or by gently massaging your scalp.
Don't have a spouse - or your spouse isn't available reliably at bedtime? NEVER FEAR! There's an online alternative that can help you reach that fuzzy relaxing state of near-unconsciousness. There is an entire online community of folks called ASMRartists who create audio and video content specifically for the purpose of eliciting the tingly response from your scalp - and for many people, it works WONDERFULLY. I have watched hundreds of these videos and even on my WORST nights of anxiety and pain-somnia, i've found great success.
So prepare yourself for immersion in the world of ASMR... get yourself a pair of headphones (preferably "Sleepphones" - a headband which has phenominal sound and you can sleep in any positoon you prefer).
Lay back - relax, and check out a few of my favorite videos. Below, I'll link you to my favorite ASMRarist's You Tube Channels, so you can peruse the various styles - there's everything from role-playing, to watching people draw, paint (Think the "Fluffy Little Trees" of Bob Ross on PBS) - to elaborate story-lines with sci-fi added special affects.
So get comfortable, plug in your head phones, and try ASMR.... check back tomorrow for a list of some of my ASMR favorites!
Having trouble drifting off to sleep? Try these videos:
Here's a list of the ASMR channels I've followed (all the ones linked to above). Special thanks to all of you who who make these videos and have given me the opportunity to finally get some sleep!
Olivia's Kisper: https://www.youtube.com/channel/UCtc8gcFs2KXRzpV5iwJA8-w
Ephemeral Rift: https://www.youtube.com/channel/UChRV-sCl5Fma4qm_hFpDKBQ
HERE IS A COLLECTION OF MY FAVORITE ASMR / SLEEP / RELAXATION VIDEOS...1) Find yourself in a relaxing beach cabana with a massage and reiki - all while Ally makes you a drink, applies sun-tan lotion and the relaxing waves help you drift off to sleep:
2) Allow HeatherFeather to walk you through a guided-relaxation, into the woods, where you'll have a magical experience. Controlled breathing, whispered words, and great in-you-mind visuals. This video is audio-only:
3) Another favorite of mine is "JustaWhisperingGuy" who makes MAGIC with his 3Dio Binaurel microphone. His videos are often really long - so they are easy to dose-off to. He has two videos - the first I love for falling alseep, the second is great if you happen to experience panic attacks or anxiety when you're trying to get to sleep. Check them both out:
Having trouble with anxiety or panic attacks? Try this one:
4) And then there's Dimitri - also know as MassageASMR. He's from Australia, and admittedly, at first, I didn't like the idea of male ASMRtists... but Dimintri was the first to win me over, quickly followed by "JustaWhisperingGuy" I mentioned above. Dimitri does a LOT of sound videos, as well as actual instructional massage videos.. but this is my absolute favorite. And I can't explain why...
5) Ally is one of the most popular, and most prolific ASMRartists, mainly because of her incredible foray into the sci-fi world of virtual reality. She does some AMAZING work, and it wouldn't be an ASMR top-videos list without links to her first two episodes of "Destination" (The first video on this list is another of Ally's roleplays - she really goes above and beyond!)
Part One: https://www.youtube.com/watch?v=oapgiZc5i-g
Part Two: https://www.youtube.com/watch?v=YYpI8847naw
5) Lastly - if having your hair played with, or relaxing massages make you turn into a puddle of relaxation - check out some of my favorite hair-brushing and massage videos, as well as a few massage, facial and spa role-playing videos. These are my favorites...
Olivia's Kisper is amazing- her beautiful accent and soft-gentle videos use real life participants who get to experience the tingles in person. https://www.youtube.com/watch?v=agS1sYLkxs4
Another of Olivia Kisper's Great videos: https://www.youtube.com/watch?v=9Y4VWs9AlFA
Whispers Red is another of my favorites - and this is one of her best videos: https://www.youtube.com/watch?v=zP4thzkxF0s
Ashley (Whispers Unicorn) is one of my favorites- she is one of the few with a US accent, but she's really sweet and comes across really genuine in her videos:
Ashley also seems to do some really nice SPA roleplaying videos:
ASMRSisters1 have quite a few videos out, where one sister is almost always the massage artist and speaker, while the other sister models - this is my favorite of their videos:
And last, but certainly not least, we have Ilse, Otherwise known as TheWaterWhispers, who is very popular in the ASMR community. She has a TON of great videos, but I am going to share with you just a few:
So - tell me. Do you experience ASMR? Did you find a favorite video to help you sleep?
Do you find these videos relaxing
even if they didn't give you an actual ASMR-tingles-experience?
Did they help you sleep?
Do you have any channels you think I should add to the list above?
Do you have a favorite ASMRartist now?
Please share your thoughts and comments below!
I'd love to hear from you!
Please share your favorite methods of getting proper sleep -
and any ideas you have that I didn't include!
Life at 34, as a mother, a wife, a daughter, a friend... with Ehlers-Danlos Syndrome, nothing is easy..but it *IS* worth it.