With Ehlers Danlos Syndrome there are typically a lot of medical issues and diagnoses. And with diagnoses comes medications and a lot of them. There is something for pain, for muscle spasms, vitamins your lacking, heart medications, etc. The list just goes on and on. So day ten of our Countdown to an EDS Christmas is medications.
Enjoy the EveryDay Successes!
Comment and let me know what your day ten consists of!
Most EDS patients or any patient of a chronic illness goes by the term “spoonie”. There is a story behind this but the short version is everything that we do takes a spoon or one energy if you will. On any given day we could have 15 spoons or we could have 4, there is way to guarantee your spoon count. Everyone is different. So day 11 of our Countdown to an EDS Christmas is spoons.
Let me know in the comments if you would like to hear the full version of the spoon theory!
Enjoy your EveryDay Successes!
As a zebra, we “love” to collect medical supplies and my number one collection has to be braces for just about each and every joint I have. Most zebras have a collection of braces, wraps, splints, etc. So, day 12 of the EDS Christmas countdown is 12 braces.
To celebrate the Christmas season, I am going to do a 12 day countdown to Christmas. Each day will be something different that zebras know all too well. Please come back each day to see what is in store and comment!
Recently I discussed how planning is a necessity for those with a chronic illness. Planning for a zebra is not just picking out an outfit and deciding which route to take. It is a very complicated math algorithm, that must be executed precisely. My form of this planning starts with the following questions based on the location: how many sets of stairs are there, is there a lot of walking, how much walking, does the venue have seats, can you rest, etc. Then the questions revolve around the current state of my body. These questions include: how bad am I hurting, what will I have done before that, what do I have to do after that, can my joints take it, etc. Then I ask myself all the questions again and add up all the facts and the concerns. Working through all the components is hard but in the end I determine if the trip or event is worth it. I have to add the benefits and subtract the consequences and figure out what the best option is. Dividing my time and strength is less favorable than just doing everything I want to do but the only way to ensure my safety. After the numerous mathematics equations, I am finally able to start making decisions and determine my path. Does this bother me? Sometimes, but it is a good thing I like math! Does it get annoying? Sure does, but I figure it out and move on. Heck, you never know, all this math could be making the zebras smarter! Enjoy the EveryDay Successes!
Everyone has their own personal level of spontaneity and everyone plans their lives to some extent but when you are living with a chronic illness it is near impossible to be spontaneous or plan. Sounds weird that neither are easy but it’s true. Planning is made difficult by never knowing the pain you are going to be in the next day or how your body will feel in a week. Being spontaneous is made nearly impossible by the number of possible challenges you may face during the event. So what are you supposed to do? You plan EVERYTHING, down to how many times you will need to avoid the stairs or how many feet you have to walk and then shift and modify according to pain level the day of. So technically, I would say you are a little of both and neither at the same time. Makes sense, right? Probably not to those who are not forced to think like a zebra but to those zebras it makes complete sense.
Pain isn’t the easiest thing to live with but it isn’t impossible. We have all had those days where the pain just doesn’t seem to give up and it relentlessly nags you until you feel like you will never recover. We all have to remember this is far from the truth. We will all make it and be better for the struggle. Being able to overcome those days that are so tiresome (and quite frankly miserable) make us realize the extent of our capabilities. We are strong and independent and we will survive anything. It may seem hard to keep a straight face and continuously tell everyone, “I am fine” (you know you say it even though it may not be true!) but just keep in mind that there is tomorrow and you never know what it will bring. So when the pain is constant and seemingly endless just say, “I may be down today but I will be up tomorrow.”