Balance, this is a wonderful pun. Dysautonomia, for me, comes with a diagnosis of vertigo, and it comes with balance and gait problems. Along with physical issues, I need to find balance emotionally because I don’t know what I did to deserve dysautonomia, but I have it. I did nothing to cause it, none of us have, but here it is, and so we have to deal with it. I’m not the self-pity type, but some days I am like “Dang! This is just so wrong.” Do I want to be in that pit of forever thinking it’s not going to get better? No, I don’t.
I turned toward advocacy; I started writing on forums and joined DINET’s volunteer team. I read posts about how others were handling situations and I learned from them and felt encouraged. I became vocal about my symptoms and my right to describe them and be treated with dignity. I do not forget that we have a fiduciary relationship with our doctors. Would you tolerate going to the mattress shop and buying a king but they give you a twin to take home? No, you wouldn’t tolerate that. Your relationship with your doctor deserves the same satisfaction. So saying “Excuse me, Doctor, could you rephrase that because it sounds like you said…” should immediately get his or her attention that you have expectations of receiving quality treatment. They do get it, and you should only have to ask once. It’s up to each of us to speak up when we feel we are not being given the care we want and need.
Physical Therapy gets me out of the house twice a week. My health is way too complicated for a coach at the gym, and my immune system cannot handle so many public germs. My doctor at PT has combined many scripts into a routine for balance and gait, core and overall strength. I do feel great benefit from the biofeedback approach to PT that I engage in. I used to lose my balance walking up the wheelchair slope at intersections; a few times recently I’ve felt like I was going to fall over backward into the street, but I had the strength to restore my balance and walk up that tiny hill. I didn’t crack my head on the concrete or get run over by a truck. PT WIN. I get light-headed at the top of stairs, but now I have arms strong enough to grab the railing instead of tumbling down the steps like a ragdoll. We recover from vertigo and syncope faster than we recover from bruises and broken bones when we collapse on something very hard.
At home I have some balance boards for practice, I’ve got stretchy straps, some light hand-weights too, and every day my goal is to use some of it. I’m up to thirty reps of this and thirty reps of that. When I started, I would sweat at three, but it takes time to build up to double-digit numbers. You have to be patient with yourself.
I rescued two big puppies that grew into big dogs, so big I walk them one at a time. A couple of years back if one of them just gently tugged me I would trip and fall right over. Now, I can give them a yank if need be without a hazard to my health. I am doing much better because of the physical training from biofeedback. My doctors renew my scripts when I ask for them because they can see the improvement too. PT works.
In a few weeks, it will be the two-year anniversary of my diagnosis. My diagnosiversary. “CardioNeuro what? Vaso what? what-Syncope?” It was only a few minutes after I had finished a TTT. I did not faint like many of us do, but I had enough readings for the EP to ask me what makes me feel better. “I go lay down.” That was it. That was the magic answer. This was only the second time I had met the EP, but it was the first step in getting better. He started changing my medications right then and there. And over the last two years, he has slowly brought me to a safer place where the worst of my symptoms are mostly controlled. I do not often write about my EP, but he has the brains of a genius and the gentle soul of a teddy bear.
A few weeks after the TTT I had a follow-up with my cardiologist. I was already starting to learn from the internet, trying to first look at .org, .edu and .gov sites for valid information without hype or a sales pitch. Instead of being satisfied, I got curious about more than dysautonomia and its effects on our bodies. I got interested in how good doctors can have a positive impact on our health. We have not all had the same experiences with medical professionals, and in the process of seeking a diagnosis, we have met many doctors and nurses who were lacking knowledge of dysautonomia symptoms. It can lead to a frustrating relationship between doctor and patient. That frustration fueled my fire, and I talked about it with the cardiologist. He encouraged me to find answers. I read from NIH, National Institutes of Health, as much as posts and replies on forums, or the inspiring blogs and articles of online magazines. All provide a well-rounded view of what it is to be a dysautonomia patient. My doctor has never told me to study a particular topic or said: “Read these URLs only.” No. Instead, I follow my own path and learn as my interests take me. It has been an experience that I continue to enjoy and practice every day. He introduced me to self-learning as part of my healing; it has become a large part of my life two years post-diagnosis. I’ve been watching educational videos on YouTube, it’s not all fun and games there, but I watch more than medicine. Search, and you will find videos for anything you want to know on any topic. And learning something new or teaching yourself a new activity is an effective therapy for fighting brain fog and forgetfulness.
Learning to live with chronic illness can be all-consuming. But over time, you will find a balance between managing your health and enjoying your life.
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