Navigating Life with POTS
I appreciate that those who knew me from my practice are probably wondering: why am I not in the hands-on treatment game anymore? The short version of that story is POTS; not the kind in the kitchen although I do find it kind of ironic since that first knee injury which suggested something might be amiss happened in my kitchen. POTS stands for Postural Orthostatic Tachycardia Syndrome, which basically means that gravity and I are no longer getting along well. There are a bunch of little processes in the body that must adjust as gravity pulls on our body in different ways, so lying down versus standing up. They are easy to take for granted until or unless they just don’t do their thing anymore. As you might imagine my former life of being on my feet all day treating clients is not so accessible anymore with this, alongside several other things from my former life we are all kind of apt to take for granted.
So, the next time you are in the grocery store, washing dishes or laundry, cleaning your bathtub, or going for a nice long walk take a moment to be grateful. These can become less enjoyable life experiences very abruptly. Here I will take a moment to speak to those who knew me from my practice and knew that I was an avid hiker; I loved spending hours walking in the woods. My last five-hour hike was as recent as only two years ago. I am still waiting for clear diagnostics as to why my body has decided to rebel against me, so that is yet to be firmly determined. It probably has something to do with those hyper mobile joints I used to enjoy and find quirky, a genetic ticking time bomb that probably had its fuse sparked by my systemic nickel allergy syndrome, and just good old-fashioned aging. Throwing it into ChatGPT like a patient case study “they” seem to think I may have endometriosis or small fiber neuropathy, both of which can cause POTS, a bunch of my most difficult symptoms, and are entirely possible… If I could get through the wait lists to the specialists who might be able to figure these things out.
So, I am suffering somewhat. But life goes on and I have no lack of things to feel grateful for. So future tip- I fully intend to do an entire post (or potentially several) on the importance, power, and research behind gratitude as a necessary healing balm for so many difficulties in life. For now though, here I am, tentatively dipping my toe into trying something new and hoping I can create a sustainable way to package all this knowledge and experience I have amassed over the years for those of you who find it helpful and supportive.
Chronic Illness & Compassion
Today I wish to speak to a misconception which I, too, admittedly may have been guilty of as I worked to maintain my own health and support others. It is a tough pill to swallow, but it’s an important one. It promotes realistic expectations for ourselves and each other, as well as for promoting more compassion for anyone navigating whatever hand the chronic illness or health fairies have posed upon them.
Chronic illness is no one’s fault.
For the able bodied, this is a scary realization, and I can appreciate that we want to believe that we have the capacity to determine these things for ourselves, or that they are within our power; sometimes they just aren’t. We could do all the right things, and I could potentially be the poster child for that statement. We can do all the right things where we eat the right foods, we get the exercise, we do all the healthy behaviors to the best of our abilities… You can still get sick though. Those behaviors are important and valuable; I still wholeheartedly believe in them. But they are never a guarantee.
For the disabled, I know you appreciate and need to hear this because you are surrounded by messages that suggest you did something wrong. Health has always been such a high priority of mine, not just for myself but at work as well, so that I could offer my best both my clients and my kids, and I still got sick. Try yoga? I taught Yoga. I started my yoga practice at only 13 years old. Surely Chinese medicine has the answers Western medicine is missing? Maybe. I’m allergic to nickel now though, which makes me wary of both the needles and the herbal preparations which might help from that camp. I understand the anatomy and physiology of the nervous system, pain signaling, fitness and musculoskeletal health, basic nutrition, the foundations of differential diagnostics… still got sick.
We are all human, regardless of our health and abilities. We all deserve compassion and acceptance. Our society needs to drop the narratives about laziness, blame, and shame towards those with disabilities. And having been following various social media groups around these topics it is heartbreaking to see the weight of that burden on people who are also carrying the burden of the challenge their disabilities, different abilities, or health is presenting for them. Thank you for giving me the soapbox to say that for minute.
Knowledge is Power in Health
What else could my podcasts or blog offer you though, specifically? Why should I keep listening to future episodes or reading further entries? Well, another fun fact about me: when I am dealing with a challenging situation, I lean very heavily into the whole knowledge-is-power thing. During my bachelor’s degree my focus was on developing myself to become a researcher, so my approaches towards that research come from an educated angle rather than YouTube rabbit holes. I understand the differences between anecdotal evidence and well-rounded research studies, but there’s benefits to both. Especially with conditions like these that sadly aren’t well researched yet. POTS has a close relationship with a number of other conditions I explored in figuring myself out such as: Ehlers Danlos syndrome or Hyper Mobility spectrum disorder (EDS/HSD), myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS), endometriosis, mast cell activation syndrome (MCAS), autism and or attention deficit hyperactivity disorder (ADD, ADHD, and auDHD), systemic nickel allergy syndrome (SNAS), as well as the dysautonomia umbrella of syndromes and a number of autoimmune disorders. So, if you heard a condition in there that you, yourself, or a loved one struggles with, (or perhaps you just enjoy the sound of my voice and how I say big fancy medical terminology) I do hope you will join me for this leg of my healthcare offerings journey. Most importantly though, please leave a comment with your questions or other comments so that I can tailor my offerings for maximal impact for the people who are here learning from and using these resources I am creating. It is my sincere hope that my podcast and blog will become a collaboration as it develops.