When you hear about EDS for the first time it is only natural to have questions. (I know I would have some.) One of my favorite questions to answer is, “What helps keep you sane?” The answer is simple: Connections.
Connections or people in your corner is the difference in a happy life and a miserable one. I personally have met people in person and online that have helped change my whole perception of the situation I was dealt. Those who are willing to listen and learn about the struggles I have and the good that comes from EDS are the ones I like to keep around. I have some great people in my corner rooting for me. Finding your cheerleaders can be the turning point in your diagnosis and survival. Now, this can also mean you have to make cuts to your team. I have also had to cut people from my “squad”. These people were cut for reasons such as unwillingness to understand or listen to my situation. Do I miss them? Sure. Am I better off? Probably. Cutting those who do not understand and do not seem to put in effort to try can be the hardest thing to do, but ultimately you will be happier and healthier. Spending your time and energy (which you have little of anyway) on someone who isn’t willing to give you a chance is not only physically damaging but mentally and emotionally scaring.
When choosing your team, make sure to pick those who are in it for the long haul and willing to help you along the way.
Finding inspiration to write when your time and energy are stretched is much harder than you would think. I have been busier than I ever have been lately and finding the time, energy and brain power has been a truly gruesome task. Recently, I met with a friend who I have not talked to in a very long time (too long, honestly). Whether she realizes it or not, she helped remind me why I started this blog. She reminded me what this is for and how it can possibly help someone else and why not posting is a disservice to myself and those who read. This one coffee date and conversation resparked my inspiration and motivation. I just wanted to say thank you to those who have been telling me they miss my posts and asking me to write more. I will be releasing some more posts very soon for you and for myself. I am so blessed to have some of the most wonderful people in my life!
With EDS or any kind of chronic pain comes Painsomnia. Painsomnia is when you are unable to sleep because of the amount of pain you are in. This happens pretty often and there are nights that I only get three hours of sleep. This makes day 3 hours of sleep in our Countdown to an EDS Christmas! Can’t believe there are only three more days!
As Zebras, spoonies, or chronic illness survivors, we have collections. We’ve discussed this before. Many of us collect specialists as our ever growing collection expands. Right now I have an orthopedic, dermatologist, cardiologist, and OBGYN. And probably more I’m not thinking of. That is why say 4 is specialists for our Countdown to an EDS Christmas.
With dislocations come the techniques that everyone has tried to keep the body parts attached. For me KT tape works the best compared to braces and all. This is why Day 5 is 5 rolls of tape in our Countdown to an EDS Christmas.
There other zebras out there saying, “yesss!”. I’ve is one thing that gives me relief during painful days. I have used ice packs for years. I have at all times at least two packs in the freezer. This makes today, 6 ice packs in our Countdown to an EDS Christmas!
Another thing that I have collected is medical diagnoses. I have gathered a slew of them, as most Zebras do! So, Day 7 is diagnoses of our Countdown to an EDS Christmas!