I started the EDS supplement protocol (see other post for info) and am definitely feeling the effects! Unfortunately, right now, that means a lot of muscle aches. That's actually a good thing, because it means my body is losing some of its hypermobility, but I didn't realize it would happen this fast, so I wasn't prepared!
I'm trying to think of it like surgery; it hurts for a while, but in the end it fixes something and you're better off.
Wish me luck!
The pain, fatigue, and mobility issues caused by EDS make it hard to stay in shape, yet the worse shape we're in, the more problems we have. Talk about a catch 22!
The solution is to find safe exercises you enjoy. I'll be featuring my personal favorites here. First up: Indo Boarding. For those who aren't familiar, the Indo Board is a type of balance board created to help surfers train indoors. Not only is it challenging and fun, but it's also great for building core strength and leg muscles. I started using one just for fun and was pleasantly surprised when a few months later I realized I'd lost 10 lbs and had the most toned legs of my life! Not everyone is able to use an Indo Board, but if you can I highly recommend it.
Here are a few ways I use it:
•Maintaining balance. Put on some music or TV and try to stay on the board as long as possible. You will want something or someone to hold onto when you're just starting out.
•Plank. Do a plank with your arms on the board and try to balance. For more of a challenge add some push ups.
•Squats. Once you've learned to balance, see how squats you can do.
As with any exercise with EDS, start slow and don't over do it. Consult your doctor before starting any exercise program.
A fellow Zebra asked me to do a post on Deborah Cusack's EDS protocol. The idea is to combat the symptoms of EDS using supplements in five steps:
Step 1: L-Arginine
Step 2: Polysaccharide
Step 3: D-Ribose
Step 4: Probiotic
Step 5: Diatomaceous Earth (D.E.)
Eating healthy is hard for most people. Throw in a debilitating condition like EDS and it can seem impossible. Most of us don't have the energy to prepare healthy meals, so we reach for something easy and end up feeling even worse.
I've personally noticed that I feel better when I eat real, unprocessed food, like the paleo diet.
On this blog I'll be sharing some recipes that are healthy and easy to make.
Paleo Pizza Bites:
-Seed crackers
-Toppings (we used mozzarella and pepperoni, but most pizza toppings will work)
Place toppings on crackers. Serve.
It's THAT easy. And unlike a lot of alternatives, they really tasted like pizza. We served them with a side of fruit and nuts because who doesn't love those?
I was visiting my parents over Christmas break in college when my mom asked me a question that would end up changing my life.
"Do you think you have fibromyalgia?"
Her tone was casual, but it stopped me in my tracks. Yes, I was tired a lot. Yes, I had to use medicine like Tramadol to control my pain more than the average person. But chronic illness? That was something I'd never considered. I told her I thought my symptoms were just the result of stress and an inherited bad back. But over the next semester I'd think back to her question many times.
It was the spring semester of 2011 and I was interning at a production company on the Universal lot. Normally I enjoyed the walk from the parking garage to my office, but recently I'd been experiencing knee pain and numbness in my toes by the time I got there. At first I told myself it was just my shoes or the cooler weather, but eventually I couldn't deny something was wrong.
I made appointments with several doctors, but aside from a high pulse and low blood pressure, they couldn't find anything wrong. I started researching fibromyalgia and found that I did have many of the symptoms, except that my pain seemed to be more in my joints than my muscles. Still, I joined a support group on Facebook to learn more and stay motivated. But reading post after post about pain and applying for disability was too much for me. This wasn't the future I envisioned for myself. So I left and convinced myself that whatever was wrong wasn't chronic and would soon pass.
One evening at my internship I began having pain in the area around my right kidney. The production company had been incredibly accommodating, giving me a closer parking space and letting me use a golf cart for errands, so I felt I owed it to them to work through the pain. Besides, there was only a couple weeks left and I wanted to learn as much as I could in the time I left. I made it through the rest of the day, but the drive home was almost unbearable. At home I took one of the hydrocodone my doctor gave me for emergencies and went to bed, but the pain only got worse. I knew there was no way I could drive with this much pain, so I called a cab. At the emergency room I told them what had happened and waited to be called. It was an unusually busy night and no rooms works be available for a while, but seeing how miserable I was they gave me a bed to lie on in the hallway while I waited for the doctor. Finally, she arrived and I told her I suspected I had a kidney stone, something I'd experienced twice before. "What do they usually give you for that?" She asked. I told her morphine. She looked almost offended and handed me a Tylenol. I took it, but reminded her the prescription pain medicine I'd taken at home hadn't helped. She looked annoyed and left. When she eventually returned she wheeled my bed into an empty room and told me she'd be doing a pelvic exam to see if an STI was causing my pain. I explained that I was clean and had never been sexually active. She told me she would just wanted to look at the outside and I agreed. I lay back and was already feeling uncomfortable when I felt a sudden pain. I screamed and sat up. She had started an internal exam after telling me she wouldn't and I was furious. She only sighed in annoyance. She agreed as if the whole thing was my fault, but eventually agreed to a CT scan to Creek for a kidney stone. When the scan showed a small stone in my right kidney she seemed shocked, as if it were impossible for me to know what was wrong wth my own body.
It was morning before I finally got a different doctor and some pain control. Having been awake for over 24 hours I immediately fell asleep. When I woke up I was told that they needed to release me, but that my mom had gotten a flight and was on her way. I was given a prescription for oxycodone, some cranberry juice, and instructed to go home and rest. I don't remember much except that the medicine made me feel sick and when I woke up my mom was there.
The next week was spent seeing different doctors, who couldn't seem to agree on whether or not the small stone was the problem. Meanwhile, I was depressed and bored out of my mind. I would lie in bed and pain my nails over and over again. Finally, my mom told me she'd found a doctor where she lived who thought he could help by doing a scope and breaking up anything in my kidney or ureter. I finished up my work for my internship, packed a few bags, and flew to my parents' house in Milwaukee.
I had the scope done, but to everyone's surprise, that didn't find anything. The rest of the summer was spent testing theories and trying different medications. Things would seem to get better for a while, then all of a sudden get worse. By the end of summer it was apparent I wouldn't be able to return home or go back to school.
2016 was the fourth year we've attended C2E2. But this year was a little different because it was the first year I went in a wheelchair. I probably should have used one last year, but, as happens all to often with EDS, didn't realize it until it was too late and I couldn't walk for a week. I've been using wheelchairs on and off over the last few years, but always rented or borrowed them until now. Even though I can still use my legs, doing so for more than a short time results in severe pain.
We went to a store that sells used wheelchairs and other mobility equipment. We told them about my condition and what I was looking for. The woman who helped us was incredibly helpful. The experience was much easier than I expected and we got the chair for a fraction of its original price.
Just for fun, I decided to buy some spray paint and personalize the chair a bit. I also put together an Oracle/Barbara Gordon costume to wear to the convention.
I was a little nervous and even embarrassed to show up in a wheelchair, but I'm so glad I did. Not only was I able to enjoy myself more and spend a longer time at the convention, but I didn't get hit with a wall of excruciating pain once I got home. We bought a few accessories for the chair which were really helpful: a seat pad, a bag that goes on the back, and a two cup holder caddy that also straps onto the back. Those made life a lot easier and more comfortable!
Interestingly, I think being in the chair gave me a more "normal" convention experience than I'd had in the past. While some people may see my wheelchair as a sign of weakness, to me it's a symbol of freedom.
