For the past week or so, something has been happening to me that I can’t explain.
My sleep has been a bit off-kilter, although this isn’t unusual. Since I don’t work anymore, my circadian rhythm somewhat resembles this:
Anyway, on some days, I’ve found myself awake very early, between 4 and 5 am, unable to sleep anymore. Ok, whatever. Not a big deal.
But once the sun comes up, it starts. A near-skin-tingling anxiety that has me pacing, sitting on my bed rocking back and forth, and punching pillows because I can’t relax. I can’t sit still to read or write. Listening to music doesn’t calm me at all.
The only thing I can think of is that it’s related to how awful I’ve been feeling for the past two weeks. Yesterday was more horrible than most days. But I’ve been dealing with this for seven months now, and it’s really starting to make me crack. My appointment with the POTS neurologist is finally next week after six months of waiting.
But I’m terrified that he won’t be able to help me.
Now, everyone else I’ve talked to who has seen this doctor has had nothing but wonderful things to say about him. He’s brilliant and he won’t stop until he figures out what caused your specific brand of dysautonomia so it can be treated and possibly help you feel better.
But it seems to me that most people have an underlying condition that’s treatable, such as Sjogren’s. Unless we’re completely missing something (hence the reason we’re going to an expert), the cause of my POTS was sequelae to cumulative anesthesia from my three close-together surgeries last year. How do you treat that? Am I permanently damaged?
And my efforts to help myself feel better seem to be losing their effectiveness.
Last week I started recording orthostatic vital signs twice a day to prepare for my appointment. This means I take my pulse and blood pressure laying down (supine) and then stand up and take them again. If the difference between the numbers is greater than 30, one is considered to be orthostatic by whichever number you’re measuring.
So. When the heck did being orthostatic by pulse by 30-50 points every morning, and even still sometimes every evening, after all the hydrating and salting, become my normal?
62 to 96. 66 to 95. 68 to 105. 79 to 116. 69 to 106. 75 to 121. 81 to 135. 78 to 113. You get the picture. And wow, have I felt like trash. Even though I’ve been consuming at least 5 grams of sodium and 6 liters of fluid (that’s all fluids in a day total) every day!
I think my body is becoming resistant. My kidneys have likely adapted to the increased fluid and sodium after six months and are just flushing it all out, so it’s not going into my vasculature where it’s supposed to. Which means I probably need medication to help the fluid stay where it’s supposed to.
But I don’t want any more pills!!! I take almost 40 pills a day as it is. I don’t want any more!
Why has my life turned into this…thing, this train wreck, this dumpster fire, this never ending game of Whack-A-Mole except it’s with chronic illnesses?
So. You can see why I might be having some anxiety, even though I still really can’t explain the sheer degree of anxiety I’m experiencing. Maybe it has nothing to do with my upcoming appointment. But something is causing me to have these episodes in the mornings, where all I want to do is scream and cry and punch things.
Well, today I finally broke. And I did what I should have done when this first started happening last week.
Sobbing on my bed, I begged God to help me. I didn’t know what else to say. Through my tears, just “Lord, help me.” After a moment, my mind cleared a bit. So I asked the Lord for His peace, which transcends and surpasses all understanding, a peace so complete we can’t even comprehend it.
And within ten seconds of uttering these words, “Lord, please give me Your peace that transcends all understanding, I need Your peace, the peace only You can give,” I was completely calm. And I haven’t felt this calm in weeks.
Say what you will. But I had a divine appointment with my Jesus this morning.
“Christ suffered in order that we may know Him. If you are hurting today, may it lead you to know your Savior more deeply than ever before. For those who are in Christ, we can trust that just as His suffering had a holy and glorious purpose, ours does as well.” Sarah Walton, True Woman blog