Some days I amaze myself. And I’m actually able to do a thing. But today I sort of had to, so I’m not sure if it really counts as a thing. And yet, I’m exhausted enough now that I think it does count. Well then.
Despite my incredible fatigue, I stayed up for 25 straight hours Saturday into Sunday in an attempt to get myself back to sleeping at night instead of during the day. I just couldn’t do it last week because David was working nights, so I just stayed up all night and slept during the day when he slept (although I would sleep a lot longer than him…) So yesterday I spent several hours listening to some online sermons from a church we’re looking into (spending hours in the Word was amazing), took a nap from 6-9 pm and then went back to bed at 2:30 am this morning. Once I managed to get David to stop snoring without suffocating him, I finally slept for about 2 1/2 hours until his alarm went off. Then I dozed for a few hours more.
Finally, I managed the impossible and dragged myself out of bed at 9:30 am. It was partly because of a troubling symptom that’s been happening the past several days that I didn’t want to deal with. It only happens when I’m lying down, but I’ll suddenly feel like I’m about to pass out (not fall asleep, but actually pass out; there’s a distinct difference.) I suddenly almost lose the ability to move, my vision begins to tunnel, and my head feels really weird; it’s just like how it feels when you’re being put under for surgery with the gas (versus propofol which is more of a consciousness light switch.) Sometimes I can pull myself out of it by rolling over, but it just keeps happening, and I hover in this barely-conscious state until I can gather the strength to roll over again. It’s actually quite terrifying and I don’t know what’s causing it.
Anyway, I got up and got ready for the trek to main campus to get my blood drawn and have my ACTH stim test. I was so exhausted already, but I just needed to get it over with and get some answers. Just as I was about to leave, the neurovascular surgeon’s office called to set up an appointment, so I’ll see him next Wednesday at 11 am. David will be able to come with me since his shift doesn’t start until 12:30 pm, so that’s great. I’ll need to start working on my list of questions, because I have a lot already.
I grumpily drove David’s car all the way to main campus (he forgot and took my car this morning.) I dislike driving his car because it’s 14 years old with 171,000 miles on it and I’m always afraid that something will go wrong while I’m driving it. Plus it doesn’t have cruise control. But I made it there in one piece. I went to the lab nearest my endocrinologist’s office (there are at least four outpatient labs at main campus that I can think of) because they’re familiar with doing the ACTH stim test and I would be really mad if it got messed up. So I got the baseline level drawn, along with some other labs. Then I went to my endocrinologist’s office and got the shot of Cosyntropin at 11:15 am, then went back down to the lab. David came to sit with me for a bit (he was bored and needed a quick break from his students) while I waited for the first half hour to go by. We switched keys so I could drive my car home. At 11:45 am, they called me right back for the 30-minute level. Then I went back out and waited some more. Then at 12:15 pm, they called me back for the 60-minute level. Thank goodness they really knew what they were doing!
I managed to find my car on level four without much trouble based on David’s directions of where he had parked (yet I’m still thankful for the keyless entry *beep beep* to direct me.) Then I realized that his sunglasses were in my car. I felt bad because it’s a really sunny day, so I drove up to the roof on level eight where I parked his car and left his sunglasses on the driver’s seat to surprise him. ? I also stopped for gas on the way home! That’s a normal thing that normal people do! So that’s actually two things I did today! (Stop laughing.)
But now I’m exhausted. I’m curled up in bed under my warm blankets because it’s cold outside (relatively speaking.) Casper and Luna have joined me for their afternoon naps. I think we may need to turn the heat on tonight for the first time this season. It was 67 in the house when I got home and it seemed like everything I touched was cold (including the toilet seat- yikes!) When it gets to that point, it’s usually time to turn the heat on. But I just turned on the fireplace since it usually helps by a degree or two.
I know David is going to ask when he gets home if we can put the winter cover on the pool today. But, as is the case with us “spoonies,” I’ve already used up all my energy for the day. I know that sounds pathetic, but that’s where I am right now in terms of recovery. So we’ll do the pool tomorrow. As long as I’m not still too exhausted from today…
Hopefully I’ll get my lab results by the end of the week. Then maybe I’ll have some answers as to whether getting part of my pituitary gland lopped off during surgery is causing problems now. Is this a thyroid problem and I just need to increase my Synthroid dose? Is this secondary adrenal insufficiency and I need to start taking hydrocortisone? Or will everything be normal and this is just a really slow recovery? We’ll see…