Forgive my bluntness, but I feel like crap right now. I’m going through yet another period in which various bodily functions are going haywire, and my attempts to correct its bad behaviors have been almost entirely unsuccessful. And it’s getting old.
Most frustrating, and the malfunction that’s causing the most hardship, are the problems I’m having getting any restful sleep. Just about the time I started needing a wheelchair, I became what can best be described as a bi-polar sleeper: I would survive on only a few hours of sleep a day for weeks at a time, and then crash and sleep almost uninterrupted for days. I managed to make this work for me, though, and it didn’t seem to cause me any problems as long as I didn’t try to force my body into doing the opposite of what it was inclined to do.
Right now, I would sell my furry little children to get a few solid hours of sleep at night. It’s been weeks since I’ve been able to sleep through the night. This has happened before, but now I’m also unable to sleep during the day either. Nodding off isn’t the problem -- I feel like I’m doing that all the time, including once in the middle of writing this -- I just can’t stay asleep. If I’m lucky, I’ll manage to doze for up to 30 minutes before I jerk myself awake again. It doesn’t help that I’m having pain flares at the worst moments (e.g. right as I start to relax and drift off). And it just annoys me to no end that taking the pain meds, in doses large enough to drop a small pony, doesn’t do a thing anymore to promote drowsiness.
I’m starting to feel like a sleep deprivation experiment. I’m so exhausted that I’m woozy -- I’ve got that swimmy-brain feeling more often than not, and I actually get nauseous
from it sometimes. And my nerves are shredded (as my long-suffering hubby will attest), which I’m pretty sure is contributing to the muscle knots I’ve been battling in my left leg and calf (not exactly helpful when it comes to getting restful sleep in their own right). The really sad part is that the emergency medication I take when my legs get that bad, which is usually so powerful that taking even 1/20th of a tablet (1 mg) typically knocks me out cold for 24 hours, isn’t doing a thing to help me get some rest. *Sigh.*
Adding to my discomfort is the hard time I’m having breathing. Even though two different forms of lung disease had reduced my lung function by half, I’ve learned to adjust pretty well. In fact, when I’m doing well I don’t notice any breathing problems at all -- I can even swim 1000 meters without ending up gasping for air. But lately it’s felt like I’m wearing an iron cummerbund that’s two sizes to small -- and that’s at rest. Moving about, even doing as little as transferring into my wheelchair, leaves me huffing and puffing like the Big Bad Wolf taking on the brick house, and my rescue inhaler isn’t bringing me any relief. (I’ve been scoffing every time an asthma medicine commercial comes on that includes the claim that you shouldn’t need to use a rescue inhaler more than twice a week -- lately, I’ve been using it twice a day before lunch!)
It can get pretty scary laying in the dark and realizing that you’re gulping for air and wheezing. It’s even more frightening to have no idea if the problems are from an infection, or if the syrinx in your brainstem has started putting pressure on the nerve bundle that regulates breathing. And no matter how much you hurt, it makes you wonder if not being able to sleep might be a good thing, though, because those mega-doses of pain meds you rely on have the nasty tendency to suppress respiration. (So does Ambien and other sleep aids, which is why I’m not rushing to the pharmacy to fill one of my prescriptions.) Not exactly a good thing at any time, but it’s the last thing I need when it’s already hard to draw a satisfying breath.
So as much as I don’t want to, I’m going to give in and go to the doctor -- a general practitioner, to be precise. A new GP, since the one I had been seeing, who had finally learned all of my peculiarities (like even at my best, my lower lobe in my left lung sounds like Rice Crispies freshly doused with milk) just retired. I had hoped to be able to do what has become my standard procedure for new doctors -- making and paying for an appointment that has no purpose other than handing off records and getting to know one another without illness complicating the new relationship. But it seems that luxury has past. At least I can finally get my mammogram done if she orders a chest xray.
Wish me luck, that this is my last sleepless night, that my lung problems need nothing more than a hearty round of Cipro, and that my new doctor (a woman) will realize that no one knows my body better than me and do what my best doctors have always done: combine my instincts with their expertise.
With all of the complications that my friends and family have been through with me, I know I’m not the only one who’ll be breathing a little easier when this latest body betrayal is over.