Patient Guide Book
EDS "Life Hacks"
Navigating the world while having Ehlers-Danlos Syndrome, along with other comorbidities, can often seem nearly impossible. Here are a few of the hacks I have learned and use on a daily basis.
Do you have trouble sleeping due to a painful neck? If you’ve exhausted the plethora of pillow options, try using a small and soft baby blanket. Fold the blanket in half or into thirds and form a roll. Place it under your neck for gentle support that will hopefully help to relive pain and stress put on your neck. (Note: this method does not provide stability in cases of cranio-cervical instability and is not a replacement for a neck brace.)
Water bottle Ice Pack
Whether you are at home or traveling, this DIY ice pack is perfect for neck pain. All you need is a half-full plastic water bottle (the disposable kind) and a freezer. When you freeze the bottle, it will likely compress. The shape of the bottle will fit under the nape of your neck and be able to provide cold therapy relief.
If you have problems with dysautonomia and volume, you are no stranger to electrolytes. Carrying around a heavy Gatorade or Propel is not always optimal especially when you have trouble carrying heavy bags. Two forms of electrolytes that I use are NUUN Tablets and Propel Powder Packs. While I have not tried it myself, I have also heard that Pedialyte Packets are great, too! I can throw a tube (or few packets) into my purse and always have them on hand. Many fast food restaurants and coffee shops will give you a cup of tap water for free - take advantage of this and add in your electrolytes. Especially during travel and day trips when you tend to overexert yourself, this can be especially helpful and cost efficient!
Apple Sauce or Baby Food
Some of us have difficulties swallowing pills. A slurp or spoonful of apple sauce, baby food, or other thick liquid can aid in pushing the pills down your throat. If you take multiple pills a day or do not want to waste an entire container of your chosen liquid remedy, find a variety with a reseal-able container. Many applesauce brands come in a pouch with a screw top – these are great for on-the-go because you do not need a spoon!
Soy Sauce Packets (Sodium to-GO)
Sounds crazy, right? Soy sauce contains sodium (salt), which, in some cases, can aid symptoms of POTS, Dysautonomia, Hypokalemic Periodic Paralysis, and other conditions that make us sodium-sensitive. When you start to feel dehydrated or experience other symptoms from low sodium, drink the soy sauce packet for a quick dose of salt. Next time you find yourself at a Chinese restaurant, stash a few packets of soy sauce into your bag so that next time you begin to experience symptoms, you have salt easily on hand… just incase.
the Mini Fan
Those who have dysautonomia know that we sweat and overheat, a lot, often at inappropriate times like during class, standing in line, or just sitting doing our make up because our bodies simply cannot maintain body temperature. I have found that the mini fan I can plug into my phone or a small battery powered desktop fan can make all the difference.
How I even learned this hack: I once received a portable mini fan at an exhibitor's booth and this little gadget became my new best friend! At about 2-3" big, the fan plugs right into the lighting bolt port or micro USB slot of your portable electronic device (yes, it even comes with an adapter). I keep this fan in my bag at all times for the moments when I need a bit of cool air.
After the mini fan, I realized that I needed other options. I am known for getting quite overheated as I get ready in the morning, even if I am just sitting doing my make up. I went on Amazon and invested an entire $8 into a 5" battery powered, adjustable desktop fan and I swear by this thing! This O2COOL model in particular has a high and low speed and has been great for the past 3 months I have been using it! Highly recommended.
If you have problems with frequent sacroiliac joint subluxations, this trick is for you! Lie on your back with your knees bent, place a soccer ball between your knees and try to squeeze the ball. You will likely hear or feel a click that may indicate your SI joint realigning. Sure, this trick is more suited for at home use rather than traveling – it would be quite difficult to fit a soccer ball into a suitcase. (Note: Prior to attempting, please go over this technique with a certified Physical Therapist or medical professional to ensure that you are using the proper form and that it is safe for you to do on your own.)
Is nausea a persistent pest? Try peppermint. My go-to are the “After Coffee Peppermints” from Starbucks. (No, I am not endorsed by them… I wish, because I have purchased enough of these to fund the company, jk.) These mints are small and strong. Sometimes even the smell, alone, can help to relieve my symptoms. But, for when I am really not feeling well, I will pop a few of these mints in my mouth and pray my nausea will subside. Peppermint gum and other forms can also be used. Many other people find that peppermint essential oils can help, too! While I have not personally found relief with this method, I am told that placing a drop onto your temples and elsewhere can relax your body and lessen your nausea.
Never mind the strange looks from the barista when you ask for a straw with your hot coffee - straws are my lifesaver and I use them for EVERYTHING! Tipping my head back to drink often ends up with the liquid all over my shirt and so, I use straws for every drinking occasion from cups to bottles, and everything in between. Yes, I could tell you stories of the time I was at a photoshoot and pulled a straw from my purse to drink a bottle of water or the time at the bar when I asked for a straw to drink my cider from - but hey, no spills!
Straws are also an excellent post surgical tool! After surgery, you neck is fused in a new place and you have a neck brace on 24/7. Brushing your teeth is an often overlooked action that can be quite difficult. Here's are my tips: When brushing your teeth, use a straw to spit into the sink. Then, using a different straw, drink some water to swish through your mouth and spit back into the sink. This is also great for when you use mouthwash, too!
Have you ever been told, “just breathe”? Well, they are right… sort of. Breathing techniques can aid in controlling your heart rate. In college, my soccer coach used to walk us through the following series of steps to lower our heart rate by 5 bpm:
Breathe in for 5 seconds - Hold for 5 seconds - Breathe out for 5 seconds… and repeat three times.
Is he right, that this can really lower your heart rate by 5 bpm exactly? I’m not sure, but it does help to relax your body and regain control of your mind.
Raising it to Eye Level
Yes. We all know it, we all hate it, we all need it. We spend hours a day on our cell phones and it is imperative that we raise them up to eye level rather than looking down. It is also important to lift up books when you read and use a laptop lift to raise your computer. Avoiding looking down reduces neck strain aids in limiting neck mobility and, further, helping to avoid degeneration caused by vertebral instability.
I personally use the Twelve South HiRise Adjustable Stand because it is light, adjustable, and portable. Sometimes I find it is a little bit low but, hey, you can always stack a few text books underneath to lift it even higher! If you find yourself trying to lift your phone but experience it slipping out of your hands, try Pop Sockets (or a cheaper, but similar product). This extendable accessory can help you to get a better grip on your phone.
by Victoria Graham
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