Following Up

 

I want to take time to follow up on my last entry. I activated my "I've fallen and I can't get up" button system last week, and am wearing it around the house full time now. I find I am having mixed feelings about it. I keep saying to myself, "I'm only 57 years old! I'm too young to have to wear one of these!" Now, I know that age has nothing to do with disability, and disability only slows me down, it has not stopped me. I know I can feel any age I choose, with a bit of imagination, and can choose to feel-and act-young or old, one after the another, if I wish. But the refrain still echoes in my mind, "I'm only 57 years old..."

 

And I am quite aware that the button does nothing to help me not fall. It only helps if I fall so badly that I can't get up. So far I have always managed to get up (except for that one time, right after surgery, when I had to call the fire department for lift assistance, but even then I managed to scoot myself to the phone), so unless I break a hip or something, I am paying big bucks (for me) for something I hope I'll never use.

 

So I have been asked, how did I get here? Poorly controlled diabetes, over the course of more than thirty years. I was not bad the whole time. In good times, I controlled my blood sugars very well, balancing food, exercise and insulin well. In bad times I gave up, still giving myself insulin, but eating badly and not exercising. And I have been depressed on and off my whole life.

 

This lead to one of those invisible, under-discussed, exquisitely painful diseases: peripheral neuropathy. It happens when nerves die. I have a weird, almost unexplainably painful feeling/non-feeling situation in my feet. Huh? you say. I have numbness and buzzing and pin-and-needles and pain in my feet, and right arm and hand. The former is from diabetes, the latter from the injury to my arm. It is a kind of pain that only those who have it (and there are other causes beside diabetes) can understand. There is no way to explain that I actually have pain somewhere that is numb. And asleep. And buzzing. All at the same time.

 

The upshot of all this is that have very little feeling in my feet, no real sense of where they are in space, therefore where I am in space. Not only do I trip over my own feet, I trip over the floor as well, and, set free on a road, I walk like a drunk, wandering wobbly legged from one side of the road toward the other, three steps forward, one step back. Hence the walker. With it, I don't have the back and forth across the road problem. and am much less likely to trip over my own feet.

 

Diabetic neuropathy can also mess with inner organs-the heart (I had open heart surgery at age 43), the kidneys (OK so far) and body regulating systems (like blood pressure). Hence the orthoscopic hypotension, where my BP falls so drastically when I stand up.  Ironically, I didn't fall at 380+ pounds, somehow my weight kept me grounded. (Yes, I did fall at work and smashed my right arm, but that was because I had the phone cord wrapped around my feet.) Now, at 162 pounds, I'm on the ground all the time.

 

I am considering a housemate, though I've grown to love living alone. And a roommate will not keep me from falling. As I have said before, I try hard to stand still before I start, but don't always remember-like when I get up in the middle of the night to use the bathroom. I land in the hall a lot.

 

Now, don't get me wrong. I sound as if I fall daily. This is not true at all. I go down a couple times a month, and rarely as spectacularly as two weekends ago. It is just often enough to make my daughter crazy, my friends worry, and me frustrated. I want to thank all those who commented with worry, concern and care on my last entry, and reassure all that I am trying very hard not to fall.

 

I think the best suggestion was to only fall on pillows. I am considering a couple of options. 1) to pillow the floor throughout the entire house or 2) to have a "pillow suit" made, one which will cover me from head to toe, leaving out only my eyes and nose. What do you think?

 

Blessings, Margo

Tags: peripheral neuropathy, silent disease, falling down