I get up weak and groggy. I either wake up because it’s time to take meds, or I sleep past 6 hours since the last dose….and I am choking and aspirating. Olive usually tries to wake me up at 6 hours, but way too often I pull the covers over my head and roll over for another hour or two.
Every morning I dread the routine because I am invariably queasy. After visiting the bathroom, it’s time to shoot up Lantus and take a probiotic with a half of a juice glass of liquid mixed with a capful of Miralax. Then I roll over to my chair, sit down and take the meds in my morning pillbox…Mestinon, Motrin, 3 stool softeners, vitamins, etc. I try to drink as much water as possible.
In a good day, I have to visit the bathroom in an hour or two. On a bad day, the gastroparesis holds up the works and my guts just hurt and my blood sugar goes up. I truly hate what has happened to my whole abdominal/pelvic area. Nothing works correctly. Everything hurts. It’s difficult to pee and then to empty my bladder. It’s impossible to poop without Miralax and stool softeners. Much of the time it’s difficult to burp or pass gas and my hernia swells up huge 😮
So, I visit the bathroom quite a few times for 4 or more hours….the whole time in borderline agony. Sometimes all the pain and weakness does me in, so I take a nap. The longer I am awake, the more I see double and blurry. Also, my chest hurts more and more as the day goes on. Not like heart attack chest pain….like hurts to breathe chest pain. I have to nap with CPAP and oxygen to gain strength.
As long as I don’t eat after breakfast, I start to feel better at some point in the evening. During the summer, that was convenient. I would shop at Trader Joe’s just before the 10 PM closing, then go across the street to Smith’s, because they don’t close until midnight. Now, by the time I feel OK, it’s dark and cold. Sigh….
When I have to go somewhere or when Heather and the kids come over, I don’t take all my meds. And I don’t eat much. It makes me able to skip many of the bathroom visits, but I pay for it dearly for days afterwards.
Over the course of the day, my body temperature changes a lot. I almost always wake up feeling too hot. After 2 or 3 hours I am getting cool. I usually feel pretty even until late afternoon when all of the sudden I am freezing….no matter what time of year it is. Then around 8 or 9 at night, I get too hot again. Once I get into bed, I keep the fan pointed on me until I am cooled down, then I cover up with a quilt and snooze. Then ALL NIGHT LONG, I have night sweats. Doesn’t matter if I am too hot, too cool or just right…..the night sweats are relentless.
Oh…..there are many aches and pains and breathing problems and legs giving out plus arms like lead and various swellings. Every day comes with its own set of unique and sometimes baffling symptoms. What hurts really bad one week, isn’t even a memory the next.
The pinky joint that was deforming last week is still deformed, but it stopped hurting. Everything seems to happen in bursts and cycles. This week, even when I think I am being careful, if I close my eyes, I fall. I just never know from moment to moment what’s happening next.
I really, really want to weed out my cupboards and give away canned goods that I will never eat. I hope to make that my project of the week. The rest of me has to cooperate with my brain! And my brain has to work. Ahhhhh….details….
I examined my bed closely. I am glad I did. I am wondering if the problem is that the frame needs tightening up? Only problem is, I can’t bend. I can stick my whole hand in the gap between frame and box springs. Where’s a flexible body when you need one?