More often than I should I see Zebras (people with EDS) posting about how someone says they shouldn’t complain because they “don’t look sick”, “seem fine”, “weren’t on crutches yesterday”, etc. It is complete insanity to expect someone to “look sick”. It’s outrageous to think that you understand what someone is going through by looking at them. Every human being has skin that houses emotions such as: joy, heartache, pain, excitement, and more. No one can read those things by looking at someone. No one should feel a certain way about themselves because someone else feels that you don’t deserve your feelings. I have done this myself. I have condemned myself for being sad or hurt by my pain, because someone else couldn’t wrap their close mined brain around it. We, as a whole, need to be more understanding. I have had to learn to explain and not attack those who don’t understand. We can educate those who have misunderstandings. This can help both parties in the conversation. The Zebra can eliminate some stress by talking about the pain and heartache they experience, while the other person can expand their knowledge and (hopefully) empathy.
To those who don’t think their feelings are valid, you are allowed to feel bad, sad, mad, glad, or whatever you need. You are the only one who understands your feelings and what you need at the time. No one should try and challenge your feelings because they can not possibly understand the way you feel. Please know that you are allowed to feel and express yourself in any way. Please know that there are people who care enough to help. Please know that your feelings are valid.
*Checks watch* Yup, it’s been a while. And I’ll tell you why… this is the story (or the striped tale) of my life the past year…
April- I took a LOT of exams. (I was STRESSED!!!) 😥
May- I GRADUATED from college!! (Finally! I took what I am calling a victory lap. Sorry Dad for the extra year of financial aid!) 🎉
June- I got married! (And let me just tell you, it is difficult to plan a wedding. Planning a commitment ceremony is crazy hard especially when not even your body parts want to stay committed to you!) 👰
July- I moved! (It was only a few blocks but it was still hard!) 📦
August- I started my first big girl job where I got to put my degree to the test! (Stressed isn’t the word!) 😭
September- Did y’all see that hurricane? I sat and worried about a lot of people. 😦
October- I got to go to see the Dallas Cowboys play the Redskins! (Keep your opinions to yourself, this is my blog.) 😛
November- I had some terrible medical stuff happen and had to have a procedure done. (I am recovering and doing just fine!) 👩⚕️
December- I was in a wreck! A deer totaled my husband’s car on a trip from my parents house. (Me, my husband and our dog are fine. The car however is a goner!) 🚙
January- Feeling super guilty for not posting since last April!! Oops. To be fair…. over the last few months I have earned my zebra stripes. Y’all, I am ready for life to calm down.
As a teacher, there are many different phrases you hear on a daily basis. Following is a conversation I overhear pretty often.
Student: Can I go to the bathroom?
Teacher: I don’t know, can you?
Student: *ugh* Maaaay I?
The first few times I heard this, I just laughed at the memories that it brought back from my years in school. After a few times, I started to think about the idea of “Can I” vs. “May I”. I realized that those of us that live with a chronic illness don’t have the luxury of asking, “May I”? Much of the time, we are forced to ask ourselves, “Can I?” For example, instead of asking, “May I go dancing with you?”, you are forced to ask, “Can I handle the dancing? Can I handle the pain the next day? Can I get home if I get hurt? Etc.” For those who have chronic pain or illness, the idea of “May I” may not even exist. However, it is important to remember that not all days are bad and that eventually you will have a day that you can ask, “May I?”
Remember zebras, enjoy the EveryDay Successes!
Some of you probably read that and thought, “What? There is no MVP!?”, but I believe that we have to give credit where credit is due. The real MVP’s are those friends who stick with you through thick and thin. I have mentioned time and time again that you have to make cuts to your team; eliminate those who are toxic to your health, whether that be physically or mentally. But today we are discussing those that you wouldn’t trade for the world. These are your MVP’s. My MVP’s are the ones who never give up and always look out for me, sometimes too much, ha. MVP’s are friends who are willing to sit around and watch movies or play card games instead of going out because they know that you’re in pain, the ones who decide to pick you up without asking because they know that driving is painful for you, the ones who ask what you need before you even need something, the ones who can tell on your face (even though you’re smiling) that you are in pain. These are the people to hold close and love with all your might. These are your winning team and the ones who will get you to the championship. Every team has a few key players. They are as follows:
The Know It all: the one who knows you better than you know yourself and knows when you are hurting and what you need.
The Joker: The one who makes you laugh through the pain and brightens your day with the pure silliness they possess.
The Worrier: The one who worries about your safety. The one who makes sure that you are taking care of yourself as much as they feel you should.
The Tough Love: The one who tells you to suck it up when you need to. The one who makes sure that you are not a pity party of one.
These are are all essential parts of your team. Make sure to draft the right players and treat them with care because they help make you who you are. These players will be the back up you need to make it through all the difficult times and will help you conquer all the opposing teams. For those MVP’s reading, I love you so much and wouldn’t trade you for anything. You are my championship team.
P.S. Sorry I can’t pay you as well as the MLB. 😉
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.
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.