By Ellen Lenox Smith
In this second part of my series on living with EDS, I wanted to share these safety tips that I have learned to follow that I hope will help others, like myself. (You can read the first part here.)
Please note the information in this post should not be considered as professional medical advice, diagnosis, or treatment. It is for informational purposes only and represents my opinions alone.
To prevent your sacrum from shifting out of place while getting into and out of a car, it is best to find a car seat where you do not have to either dip down or lift yourself up when getting into the seat. If you can just slide into the seat, you have the best chance of staying in position.
To get into the car with the least chance of slipping out of position, I sit down on the seat facing to the side of the car, turn toward the front of the car, and then swing my legs onto the floor.
Check and see where your legs are when you sit down. It is best if they are at a 90-degree angle, not above your waist or below. The best way to judge may be to focus on your knees. If they are higher than your hips, you are probably in trouble and need to adjust the seat.
If you are sitting in a chair and something drops to either side, for many of us with EDS, the most damaging thing we can do is lean over to the side and reach down to pick it up.
That will cause what is called an “up-slip,” where the femur jams up into your hip. It does not hurt at first but tends to show up the next day and is very uncomfortable.
To check if you have created this problem, lie on a bed, arch up and then gently put your legs down. Check to see if your knees match in height. If there is an up slip, there will be a difference in the leg lengths.
Go to an EDS-knowledgable PT and get it corrected as soon as you can before it creates significant pain.
For most of us, as we progress with EDS, holding items in our arms is painful and can cause more issues. While I was still teaching, I finally resorted to buying luggage with wheels, as you see in the airport.
I don’t know why I hadn’t thought of that sooner. I used to carry 125 students’ essays and my books up to the second floor of a large school. I would ache for days after doing it. But once I switched to pulling the bag, life had a positive change. Today, I pull my swim items into the pool and can be more self-sufficient this way.
Using downward pressure while attempting to open a can with a can opener can cause you to potentially sublux your hand, fingers, elbow, and/or shoulder. A simple fix to this is to purchase an automatic can opener. All you do is set it on the top of the can, press a button, and let it do work for you!
I am very careful to not cut food due to the progression of my condition. The pressure created on my shoulders chopping food causes my shoulders to sublux, and creates movement in the sternum. Therefore I either look for items that are precut or am sure to ask my husband to chop for me.
I also am careful with lifting any heavy pans so I don’t bend and twist and do damage to my vulnerable shoulders. When something is too heavy, I ask for help or use a lighter pan. And lifting a pan with food is also something I avoid. I either ask for help to lift it to move or dish out the quantity into a container the weight I am able to lift and move.
Greeting friends and family
If you are like me, when others see you, they assume you are fine and don’t understand that a simple hug can cause subluxations. Many times, when my husband is with me, he will warn others to not touch me.
The hardest thing is when I am by myself and someone throws me off and suddenly is greeting me with a hug. I almost wish I could wear a sign that says, “Do Not Touch.”
Try to stay vigilant and ward off the damage that comes when someone who means well greets you, only end up hurting you by mistake. For me, when someone catches me off guard, my rib sublux along with the spine and neck. Sometimes to give a warning, I actually wear my neck collar to alert others that something is not normal.
I was taught in physical therapy that when you twist, you must move from the hips. I made the mistake of twisting just from the waist and proceeded to sublux my back out. With EDS, when you throw something out of place, it can take weeks for it to settle down and hold properly again.
When sitting, it is also important to not cross your legs, for this can throw your sacrum out of place.
If you have flat feet, getting good arch support is a must. Also, if you are having problems with your legs and/or feet subluxing, then wearing sneakers with the arch support inside them is the best bet. Also, find sandals that have a good arch when you are not able to wear sneakers.
Arch support will help keep your body aligned – not just your ankles and legs, but your hips and back too.
Stability while sleeping
I have spent many years dealing with a trachea, hyoid, the U-shaped bone that supports the tongue and sternum that shifts out of place. Despite sleeping with a bi-pap breathing machine, I have had many episodes in which my breathing was cut off. My lifeline at night for many years has been my service dog alerting me when the airflow had decreased or cut off.
I am now a proud owner of a new pillow another EDSer discovered, which is holding my neck and head in the correct position and not allowing my trachea to collapse. I would encourage you to give it a try. It is called Therapeutica sleeping pillow and mine came from Core Products International.
Be sure to get the correct size. I had to exchange mine down to a child’s size to correctly stabilize the head.
Sleeping with POTS
Many EDSers also have postural orthostatic tachycardia syndrome (POTS), a form of dysautonomia that causes light-headedness, fainting, unstable blood pressure, and abnormal heart rates. I learned I had it in my 60s.
I was instructed to sleep at a 30-degree angle by raising the entire frame of the bed at the head, which can help gently train your body to better regulate blood pressure. At home, this is a simple process to do by putting boards under the frame. But what about traveling and staying in hotels?
We found out from a physical therapist that there are bed risers sold that college students use to raise the beds of their dorm up to be able to store items underneath. We purchased four plastic bed risers and found that if we use two on each of the head corners, we can raise hotel beds up for me to simulate some of the height we have at home.
It is not as high as my bed, but certainly better than sleeping flat with POTS.
Do you have other tips?
I hope these tips may help you. Do you have any tips you’d like to share? Leave them in the comments below.
Next week I’ll be sharing some tips on how to stay safe in the emergency room, and advice for clinicians on how to safely care for people with EDS.
Ellen Lenox Smith has emerged as a leading voice for patients living with pain. Featured in local and national press accounts, Ellen brings a reasoned and compassionate perspective to the need for safe patient access to effective therapies, especially medical cannabis. Currently, Ellen serves as Co-Director of Medical Cannabis Advocacy for U.S. Pain Foundation and is a member of its Board of Directors. She also serves on the Rhode Island Patient Advocacy Coalition as secretary, was appointed by the governor to the Adaptive Telephone Equipment Loan Program, and is part of the Oversight Committee for the Compassion Centers in RI. She is also active with the EDS RI support group. Prior to patient advocacy, Ellen was a longtime middle school social studies teacher. She has been married for 46 years and is the proud mother of four adult children and grandmother to five grandchildren. She also is the author of two books, an organic gardener, and was previously a master swimmer and high school swim teacher.