I was recently reminded that health information is private (with the subtext that it should not be shared). My opinion is that "private" means that it is mine to decide what I do with it. In the same way that sexuality is private; each person may choose to share or not share whatever is comfortable for them. My reasoning for sharing is that, no matter the context, I see stigmas and predjudices decrease only after people make their personal experiences known. By humanizing our experiences through transparency and lack of shame, those around us who may not suffer the same burdens tend to eventually come around to a more compassionate view. I am also sharing because a community of people with similar symptoms and struggles exists. I have benefitted greatly from reading their stories, learning from them how to effectively deal with my own symptoms, and simply knowing that I was not alone. I am not ashamed of my conditions (I was born like this!), and my hope is that by sharing, I will be increasing awareness and compassion. I will try to explain things to provide background, but I aim to be brief and matter-of-fact because dwelling on these issues is not helpful; I like to get on with my life. That said, I am happy to talk about this stuff with anyone.
I have Ehlers-Danlos Syndrome (EDS), a genetic connective tissue disorder that affects many body systems. I have hypermobility type, which explains my contortion abilities. I wrote a more in-depth blog post about EDS and all my symptoms here. Interestingly, mental health (anxiety in my case) is often affected amongst EDSers. My understanding of why so many of us deal with anxiety is that it is related to dysautonmia. More specifically, collagen (connective tissue) all over our body is malformed, including in our blood vessels. Blood pressure is determined in part by sensors in our blood vessels, and since our blood vessels are always a little lax, those sensors tell the brain to release adrenaline to try to constrict the vessels to correct for low blood pressure. But since the collagen in our vessels is messed up, the adrenaline doesn't necessarily work to get our blood pressure higher, but the adrenaline definitely still affects our mind and other parts of the body. The perpetual high levels of adrenaline explain weird heart rhythms (arryhthmias), high anxiety, and even vivid dreams (the adrenaline causes us to have less regular sleep patterns and light sleeping, allowing us to remember the dreams). Case in point, I woke up at 3:30am with tachycardia (heart racing), and couldn't sleep, so I am writing this blog post in the middle of the night. :)
Here's what I am currently experiencing physically with any associated pain (0=none, 10=extreme), and what I'm doing to deal with it:
- mild subluxated right shoulder (2), continuing to try to build strength in the muscles surrounding the joint and minimize overuse
- bursitis in my left hip (3), hip strengthening exercises and trying not to sleep on that side
- lax left ankle (2), concentrate on using the muscles around my ankle when I walk to make sure I don't sprain it
- tight jaw (1), mouth guard at night, conscious efforts to relax mouth and jaw
- arrhythmia and tachycardia (0 pain, but unsettling), wait it out. I had coffee (which I rarely drink because the caffeine makes my heart race) 2 days ago. It raced that day and again tonight. I had chocolate earlier, perhaps that was the culprit this time. I try not to take sleep medication regularly, but if I have a bad night's sleep (i.e. 4 or less hrs), I will take medication the following night to ensure that I don't become too sleep-deprived.
Mental health update:
My body tends to (over)react similarly to excitement and stress. I take a small dose of Lexapro daily to normalize my anxiety levels. Organizing Paddle On! is really exciting, but I have to do my best to relax in the face of excellent news so that I don't induce a panic attack (sort of funny). I manage this by focusing my attention elsewhere: exercising regularly, my cats, making food, reading, taking a walk and appreciating nature, talking to people about THEIR lives, deep breaths. I feel like I'm doing a great job this week, especially with all the excitement and pressure to make sure everything is organized thoroughly for this project. I feel on top of things.