Managing My Disability with Daily Routines and Remedies

Saturday, May 15, 2021

Welcome to my Health Saturday’s second B.R.E.A.T.H.S. blog post. Last week, I discussed my life-long health journey with the genetic connective tissue disorder, Ehlers-Danlos Syndrome (EDS), type-3: hypermobility. I explained how this disorder caused me to fall often resulting in several bruises, sprains, stress fractures, and compound fractures all over my body. This week, I am going to discuss some of the other aspects of EDS that affect my everyday quality of life. These are daily issues of EDS that often get noticed as symptoms, but what others without EDS do not understand is the compiling of issues that make everything that much more difficult for us Zebras (medical term for people with a very unlikely diagnostic possibility). Below I will discuss my EDS daily difficulties followed by my current routines and remedies. 

Miserable Mornings

Starting the day is a nightmare for me. I want to stay in bed where it’s safe and warm. The outside world is scary because it causes physical pain when I go out and fall down. My mind begins to race about the things I need to do, anxiety is settling in. 

Remedies: This is when I meditate for 10-20 minutes (and I try not to fall back to sleep). I also repeat positive affirmations, “I am safe,” “I am grateful for my bed,” “I am happy to wake up full of energy and joy.” Recently, I found a timer/productivity app called Forest that allows me to set a timer and when I complete the task without using my phone it grows trees in my digital garden, which turn into coins when I keep my forest healthy, and the coins go towards planting real trees! It’s a win/win for everyone and nature!

In the mornings, my body aches from my joints subluxing (slow partial dislocating) all night, causing me to toss and turn from the tingling sensation and often aching pain. My body has temperature control issues, so at night, my body gets warmer and I sweat, but the sweat makes me cold, causing me to pull blankets off and on. I also like pitch black rooms because my eyes are sensitive to the light. 

Remedies: I sleep alone with about three blankets, five pillows to prop my body, and one pillow for the weight I like on top of my head. I have blackout curtains and a blackout eye mask. When I wake, I use a foam roller on the floor to roll out my joints in my back, shoulders, and legs. 

Slow to Rise

When I do decide to get up it’s usually because I have to use the bathroom, which for me is about every two hours with a stretchy bladder, plus I drink about 120oz of water a day. The bathroom is cold, I run back to my warm bed and stare up at my vision board on the wall while I am stretching my back, hips, and arms back into place. Daily cold shower for one minute, warm shower for 10 minutes, and meditate is on my board. I have about twenty positive habits on that board I know will help me with my daily routines and future goals, but it is now appearing like an unimaginable to-do list.

Remedies: For now, I rely on this vision board prop I created to inspire and motivate myself in the hardest part of my day. I have pictures of what I really want to focus on and manifest, my positive affirmations list, and my positive behavior checklist (daily sticker chart) where I reward myself for completing simple tasks. 

Scary Showers

Showers are scarier than going out into the world. For me, standing can be tricky, especially when there is slippery water or soap suds that can easily cause me to fall and lots of things in the shower to cause pain or worse, death. I am literally scared to death of showers. Because I cannot go through life without showering, I have had to make some modifications over time

Remedies: Shorter showers, shower stool, sitting on the floor, bathing if tub is available, just rinse without using soap, some showers have seats, sit on the side of the tub (when I have a cast and can’t bathe), and at times having someone assist me. 

More Than Brush & Floss

Next is mouth care. I have had some major dental work and surgery in my mouth over the years due to falls and a sport injury resulting a broken jaw, which also knocked a permanent tooth out. My two front teeth broke in half when I was 10 years old after a fall from a bike. The dentists did a quick fix that looked horrible up until I was 18 and could work to afford to pay for them to be fixed. I rarely smiled in pictures and I am happy to have grown up in a time when nobody carried cameras, unlike today. 

I have had to replace those two front teeth about every ten years. The first two times were caps that broke while eating, the third and last time they were covered with veneers. It has only been about six years since I had them last replaced and they are now separating. My dentist says that it is because of my receding gums. Although I am not sure it is a symptom of EDS, I have been dealing with red, sore, bleeding gums my entire life, even with proper dental care.

Remedies: For my dental care routine, I use mouthwash as I brush my teeth with gum care toothpaste, then a mouthrinse, peroxide rinse, and finish off with flossing. The only relief I have found after trying all the over-the counter and prescription gum medicine, is from coconut oil pulling. I put a tablespoon in my mouth before the shower, pull through my teeth during the shower, and spit into the toilet when I am done. This affordable process has a ton of positive benefits: pulls toxins out of mouth, removes bacteria, freshens breath, whitens and strengthens teeth, and reduces gum inflammation and swelling. 

Dress for Joy

Most mornings, I get dressed in my normal attire that is comfortable, moveable, breathable, and brings me joy. You will usually see me wearing a tank-style sundress (anything around the neck causes pain), a colorful zip-up hoodie, some cotton capri pants, and flip flop sandals (socks and boots in wet or cold weather). Undergarments are often too tight. Bras, although are supportive, they cause skin irritation and aching pain to my ribs and shoulders. High-heeled shoes also scare me to death.

Remedies: This style of dress offers my body room to move when it needs to. Tight clothing, long pants, and long sleeves pull on my knees and elbows where they are super sensitive due to little to no cartilage to cushion after so many falls. Unless I am exercising, I have refrained from wearing undergarments for several years for my own comfort. For sleep, I wear a tank top and shirt with capris, and same with exercise but I will add socks and tennis shoes with medical shoe inserts for stability and balance. 

Might Make it to Midday

Now that I have done my most basic morning survival routine, I move into the next part of the morning with getting my 40oz of water in my favorite “Love & Gratitude” container. Next, I think of food. Like most people, I have been told I should eat breakfast, lunch, and dinner. This sounds great because I love food and I don’t mind preparing a lovely feast or scrumptious dessert, however, preparing food causes fear and pain. Standing for long periods of time causes throbbing burning pain in my knees, back, and shoulders. My fingers are super bendy, so holding knives can be difficult and scary while I am cutting as I fear my grip will slip. 

Remedies: After several years, I have modified my food prep routine to fit with my daily schedule. I have even hired a food prep chef for about six months when I was super busy with three jobs and doctoral school. My go-to single person food prep is Trader Joes or Alda (depending on what part of the country you are). There’s pre-cut veggies and fruits, dried fruits and nuts, a large variety of prepackaged salads, microwaveable meals for one, and tons of yummy snacks. I am also a huge fan of local restaurant cuisine and don’t mind fast food every once in a while. 

My Type of Movement

When I found out about my EDS diagnosis in 2017, my doctors and research suggested that I limit all my movement due to my hyper movement causing me so many issues. No weight lifting as I could easily overextend and cause more pain and inflammation in my tired and overworked joints. No yoga or Pilates. No active sports. No jogging or walking. All no’s for the same reasons. So what type of exercise or movement was “okay?”

Water aerobics and swimming were suggested as exercises, which I love, but water activities are not always available to me. Biking was suggested, but that is difficult for long periods of time with holding on to the handles, aching back/shoulders, and my bottom begins to ache even with a comfy memory foam bike seat. Some yoga positions are helpful for strengthening my core, but I have to modify many positions because there’s too much pain to kneel or hold positions with my knees and ankles. 

Remedies: Moving in nature inspires me to move at all. Water moves me the most, so I usually find places near water so that I can exercise there. If there is no water, I will find a nearby park, take off my shoes, walk barefoot in nature, pet plants, hug trees, whisper to the wind, and talk to the animals. My belief is that nature and water are healing, so surrounding myself with a combination of both I feel helps me to be relieved from pain and fear faster and for longer periods of time. 

Naptime

Although daily movement is necessary, it often causes exhaustion, pain, and fatigue. I struggle to find the best time to exercise. If I exercise in the mornings, I will often fall asleep as soon as I am done, even if I just woke up. If I exercise around noon, I know I will have a midday nap afterwards. I am too tired to exercise after work. If I exercise at night, I will have a nap right before my bedtime. So when do I plan my exercise?

Remedies: I plan fun activities throughout the day, every day I mix it up, but it’s about the same every week. Monday, I like to walk and dance around my neighborhood listening to my hype playlists. Tuesday, I visit a nearby water source to wade, swim, or just walk around and enjoy, sometimes I will bring a friend or family member. Wednesday, I plan to spend time with my nieces and nephews outdoors where we visit National Parks, botanical gardens, and beaches. Thursday, I usually plan to create a piece of art out in nature and that counts as my movement. Friday, I like to plan some outdoor activities in the evening with friends or family.  Saturday, I volunteer at a farm that raises food for people in need around the community. Sunday, I usually can find a silent disco party in a park or I create my own. 

Energy in the Evenings

I have found after many years of trying to be a morning person, I can’t change what my body naturally wants to do, sleep in in the mornings, and stay up late into the evenings. Most of my energy and ideas flow at night. I do wish that I could have as much energy in the mornings, but I have learned to embrace my natural routines and work with them instead of against them. 

Remedies: Journaling. When I write what is on my mind, I have an easier time sleeping. Essential oil diffuser with lavender to calm and relax my senses. Evening meditation with soft music playing in the background. More positive affirmations: “I am at ease,” “I am relaxed,” “I will remember my dreams,” and “I am full of peace and joy.”

Thank you for following along my daily routines and remedies. If you have any questions or would like to offer some more tips, please leave a comment below.

Sending lots of love and healing energy,

Dr. Jaime Brainerd, Ed.D.

*Disclaimer: I am not a medical professional and I am not giving any medical advice. My doctorate is in educational leadership and technology. I am a health enthusiast who feels that sharing health-related information I learn about myself might help others heal themselves as my mentor/teacher/favorite author, Louise Hay has taught me.