I last wrote just recently about compression garments, and it was a very positive and hopeful time for me. Unfortunately, as it often goes with chronic debilitating illness, my surprising stretch of several really good days in a row came to an abrupt end. It was really bad. As I’ve mentioned, stress is the worst possible thing for my illnesses, worse even than infection, for causing symptom worsening, relapse, etc. Part of having dysautonomia means that I have adrenaline spikes/surges out of nowhere. And regularly. Typically, the surge happens, I let it pass, and that’s that. I may be a little more wet/sweaty than normal in that moment. But instead of that, when the surges happen, I started to be filled with crippling anxiety. I couldn’t function. My heart rate which is usually in the 50’s or even high 40’s was spiking to the 80’s and even went over 100 bpm a few times. Even when my heart rate wasn’t racing, my heart pounds so hard that it actually hurts. I felt like I was going crazy and also like my heart was going to give out. I latched onto an irrational fear and couldn’t shake it. My body has been completely DRENCHED in sweat for days. My clothes so wet they could be wrung out. It also caused nausea, which make it nearly impossible to eat, and made it incredibly difficult to get the fluids I need (I have to drink a TON in addition to my daily IV infusions, or I become dehydrated very quickly, and that throws everything else off balance, making me lose more fluids and electrolytes, causing a vicious cycle that is excruciating).
I am a tightly wound person to begin with. Part of it is just how I was born, and years of invalidation have compounded it. I’ve had panic attacks before, nearly two decades ago, now (I’m old), but this was unlike anything I’d experienced and was, without question, the most horrible and excruciating thing I’ve been through. I would take c-sections and hysterectomies and appendectomies any day over this. I talked to my counselor about it, and then my doctor. Neither felt that I have an anxiety disorder, and my counselor suggested that if I talk to my doctor about medication, I ask about something on an as needed basis, versus something to be taken daily. When I spoke to my doctor he explained that this is very common for dysautonomia and part of being close to autonomic failure (I’m not in autonomic failure right now, though, woot!). We also have to be quite careful about medications for me, in general, because of my low blood pressure and low heart rate. Most as-needed medications for anxiety, by design, lower heart rate. There are actually a number of medications for autonomic dysfuction that my doctor thinks would be otherwise helpful for me, but we just can’t take the risk of them lowering my already low heart rate. I cannot express how grateful I am for my doctor and my counselor. But my husband is the real MVP. That man watched me in what had to look like an epic mental health crisis (I was sure it was), weeping constantly, heart racing, chest pain, unable to sleep or eat or relax. And he just loved me. He rubbed my back. He comforted me. He told me how much he loves me and how happy he is to be my husband. Even while I was going through something so outwardly awful. And he reassured me again and again that I would be okay, that we would be okay, that this is temporary, and that my doctor would be able to help.
Yes, I shaved my head, which I never thought I'd do, but when you lose your ability to care for yourself, it's amazing what becomes the easiest decisions.
Yes, I shaved my head. It’s not something I ever would have imagined myself doing, but I could no longer take care of it. It’s amazing what losing the ability to care for yourself makes desireable. It was the right decision.
I’m back to being pretty exclusively in bed. It was a lot of fun being able to spend almost as much time out of bed as in it, though. It was a true gift to me and my family. Hopefully I’ll get there again…being able to spend several hours out of bed a day. I think I will be more cautious. I don’t know if I overexerted myself without realizing it and caused this reaction, or if it just happened. Having the good days gave me some much needed hope, though.

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