My last post was in August of last year. By the end of September, my dysautonomia took a turn for the worst.
I do not know if it was the season or if it was the natural course of living with a condition like this. I do not know if the house we were renting that had a mold infestation we didn’t know about that made me more ill or if that is a coincidence.
I found many days I was fighting to simply “be okay.” I would have good days, and then I would have horrendous days where I tried to stand, and I quickly fell to the ground. I had to crawl to get what I needed. The indignity of it all, when I retell this, does occur to me. But, at the time, I simply did what I had to do… like I do. Like we do.
My blood pressure would plummet, and sometimes my heart rate would not increase to try to correct it. I would have difficulty speaking and on two occasions ended up in the ER middle of the night, because my husband and I thought I was having a stroke. I would wake up with parts of my body numb from lack of blood flow, difficulty figuring out where I was and the most troubling inability to express myself. I was speaking through a fog, and I couldn’t be sure the words being said made sense through the obscure sense of disorientation.
Most-oft, because of the lack of awareness about this disease, doctors concluded I was dehydrated. It didn’t matter that I had drank nothing but water with electrolytes during the day. And, I wasn’t correcting the doctors I would encounter, because I was tired. I was tired of having to educate the people I had been taught would protect me and would know better.
My dysautonomia symptoms are also not clear-cut. I am diagnosed with Postural Tacchycardia Syndrome where the heart goes above 120 beats per minute when standing. In addition though, sometimes my blood pressure is spiking now when I stand up, and my gut has been shutting down lately leading to all sorts of bloating and symptoms of severe acid reflux eating even small amounts of food. I am freezing at times, or my temperature will suddenly be higher than normal with a slight fever. Other times I feel hot, and my temperature is low. My thyroid is tested repeatedly as a result, but it is always functioning well.
My neurologist explained that many of these diseases of dysautonomia can occur on a spectrum. They can also present differently at different times depending on the cause.
In my case, the cause is believed to be Ehlers-Danlos Syndrome. Testing using the valsalva maneuver indicated blood pooling in the artery retuning to my heart which points to blood vessels that don’t constrict the way they should. This is a breathing test using forceful exhaling to see how blood pressure and heart rate responds. My doctor explained my response was ‘severe,’ showing a large plummet in pulse pressure leading to blacking out. His graph showed how my blood pressure continuously tried to return to normal, but instead it looked like the path of a zipper to me, with dips and small increases as it struggled and failed. That pattern, he explains is often seen in patients with hypermobility of the joints. And so it follows, the running theory is it must be a result of fragile arteries and blood vessels.
I am assuming most people on this blog are familiar with POTS, but you can learn more at Dysautonomia International in case you are new to this discussion. It is Dysautonomia Awareness Month after all!
So, last year, I became very incapacitated by things sometime around the end of September. I’ve heard this is actually a common phenomenon in dysautonomia patients. And, this year, after a summer of my blood pressure and heart rate being manageable, and my digestion actually working as much as I am used to, I began to think last autumn and winter were an anomaly.
Well, either my recent adventures into working part-time at a coffee shop have spurred another flare-up, or October truly is a difficult month. It is perplexing and bizarre. What is different about autumn for us? Is this specific to certain regions?
Again, I find myself struggling with sudden blood pressure drops and heart rate spikes and now… blood pressure spikes as well. My gut has been slowing down, and I am incredibly nauseated at times.
Despite it all, I feel like I am able to handle it a lot better. I hate taking salt tablets, but I have begun to take them at work to lower my heart rate quickly before it gets out of control. But, it’s not working as well as I thought it would. I am not eating so great, but I am continuing to exercise every. good. day. I have. I am finding it is necessary to keep me stronger during the bad times.
Which brings me to a an understanding I have based only on my personal experiences that conditioning does matter. If your illness has not progressed to the point where you are not able to exercise or stay active, talk to your doctor about gentle exercises. In fact, there is protocol for POTS patients that talks about Postural Training- standing in one spot for x amount of minutes per day.
I found a Pilates routine on Amazon Prime I do several times per week almost completely horizontal on the ground. Swimming is also wonderful, and it is recommended by my doctor. It is difficult for me to stay on top of it when so exhausted, but I find that it is more difficult to manage the dysautonomia with less conditioning. And, I do see a difference between last year and this spring when I started my exercise routine while still very symptomatic . Maybe it will take me longer than other people to get stronger, but I will.
It took me years to figure out how to get to this point where I schedule being active and have established a schedule at my new job with accommodations and limited hours. It’s challenging, but I won’t know until I give it a good go what I am capable of. I have big dreams, and I dream of going back to school for my PhD or traveling and exploring the world. Of having the energy and mental focus to try and publish my poems. Any of these things, maybe all of them.
I do believe we all have this strength within us to make it through the worst of times. We’ve done it before, and we will do it again. Hopefully, with more tools at our disposal and support from our inner circle of people each time we go around the dizzying wheel of dysautonomia.