Seize the day
I was recently diagnosed with Hypermobile Ehlers-Danlos Syndrome. More importantly, I just graduated Nursing School! I say more importantly because as much as hEDS is a part of me, (I mean it is literally in my DNA), it does not define me.
I spent the month of May 2016 raising awareness for EDS and Hypermobility on any social networking platform I could, every family party, any classroom, meeting, or casual conversations with the old lady down the street. If they had ears I was telling them about EDS and Hypermobility.
I think it is important to not keep information about EDS to ourselves. Explain the disease, explain how it affects every part of you, explain the pain, and do not hide this away. Being sick is not fun or easy, but we can make it easier by making sure we have fun!
I am currently trying to live a life in which I constantly push myself to do things that are difficult and painful. My goal was to graduate and get a job as a nurse on a big busy hospital floor. However, after being diagnosed with a disorder that has no cure my plans have changed greatly. My therapist explained to me last month that I need to take into account the joint pain and instability I will battle every day and think about that when looking for a job. My career as a floor nurse has been cut short before it even took off.
Big picture… I know she’s right that if I want to prevent joint dislocations and try to slow the progression of joint pain I need to take everything into play. Let’s face it, no one likes admitting they cannot do something, especially those of us with chronic/invisible illness. Instead of focusing on what I cannot do I am slowly making the transition to focus on everything that I can do, and everything I should be doing.
If physical therapy is tough but it’s going to help, it’s doable and I need to do it. If my weird limiting diet is annoying but it will make me healthier, it’s doable and I need to do it. Overall the list of things I can do and need to be doing is enough to keep me so occupied that everything else falls into the background. But I know (like most of us) those little moments of hopelessness, of anger, of discouragement, are only one bad flare away from taking total control of my life.
We did not get a choice in the genes that made us hypermobile or EDS patients or any other unfortunate illness we have. We did not have a choice … but we do have a chance. Most of us have as much of a chance as any "normal" person to live long, happy, fun, and healthy lives.
So I say, seize your chances today. Take that fun trip, try that new workout, go to that concert! Just remember … pack your medications for that trip, make sure you maintain your proper body alignment during that workout and modify moves you shouldn’t be doing, take a nap before that concert (replenish your spoons) and stay hydrated.
I believe we can do whatever we want to do, there is just some extra stuff that needs to be done to make sure we stay healthy. And in case you can’t do it right now, remember… that trip destination will still be there, there is always a new workout to try, artists will always keep playing concerts…after all you do only get one shot at taking care of your health.
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