Wednesday, January 24, 2007

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

Tuesday, January 16, 2007

Be Careful...

Be careful what you ask for, you might get it.

After nearly three months "home bound" and rarely leaving the house, Workers' Comp decided I no longer needed an aide, therefore I am no longer stuck in the house-I have been freed! I can drive short distances, like to physical therapy.

I felt like a bird whose cage has suddenly been opened.

I decided I had to do something exciting now that I was out. I chose the Annual Neighborhood Progressive Christmas Dinner for my exciting event. It is a party that follows Christmas. We start at one house for appetizers, a second for salad, a third for entrees, and a final house for dessert. The celebrants include everyone who live in the fifteen houses in our little Historical District, kids, boyfriends, girlfriends, parents, grandparents, partners, anyone who happens to be around. It is a chance to catch up in winter, when most of us hibernate.

For me, the exciting part was to be getting all dolled up to go-my first shower alone, nice clothes, make up, real shoes-as opposed the my 5x sweats and Birkenstocks I've been hanging out in. I planned go out and knock my neighbors dead with my whole get up. A few had all seen me grubby, cranky, and in pain, most had not seen me at all for the few months. Now I would have the opportunity to show off a bit, my whole weight loss, my one set of nice clothes that fit. And I knew it would get me out among people, a real struggle in my present life.

I was looking forward to it all week. Saturday dawned gray and gloomy, but I was happy. I went to physical therapy, discovered that driving on bumpy roads (the only kind we have in CT) is quite painful. I didn't care. Came home, took a nap, then a shower. In my 5x bathrobe, I wandered into the kitchen to start making the appetizer I was taking. My time line was set: make food, get dressed, find and apply makeup, find shoes, take cane and food and set off up the street.

Thinking of all this, I opened a my pantry door, reached in, then felt myself take a small step backwards, then another larger step. First I was surprised. Then the news flash sliced through my brain: "Oh sh*t, I am out of control." And in that split second, I was. I reached for the doorknob, and missed. Blasting through my head was a mantra like cry: "Don't fall on your right shoulder!" I turned left, aiming for the table. My feet seemed to have a life if their own, pirouetting in a complex series of shambling moves over which I had no control. I missed the table because I was now moving faster and faster, reminiscent of an out of control whirling dervish.

By now I knew that I was going to go down. Unfortunately I was headed towards the edge of the kitchen counter. After that things got too complicated to document clearly. I know I hit the edge of the counter, turned enough to eventually land on my (left) buttock. Somehow or other, I scraped my inner arm (left), banged my left chin and shoulder, then landed on the floor, hitting my head on the pantry trim on the way down.

When everything came to a stop, I lay on the floor, holding the top of my head, trying to assess where I hurt. At first I thought I had just banged my shoulder and head. But when I sat up there was blood on the floor. I took my hands away, and the were bloody too.

My first thought was: "There goes the party." I have promised Meg that anytime I fall, bang my head and bleed, I would call 911. So I did, grabbing a handful of napkins to staunch the flow of blood. The 911 operator told me to stay where I was. I told him I'd had to stand up to reach the phone, so I might as well go sit in the living room where I'd be comfortable.

Luckily I could grab some laundry in the dining room, because I did not want to greet the EMT's in my huge bathrobe. I found I had grabbed 5x sweats, but put them on anyway, trying to keep pressure on my wound, and talk to the 911 operator all at once. Then I sat there holding the phone and shaking.

But by now I was seeing the funny side of all this. The ambulance would arrive just as the entire neighborhood was heading toward cocktails. Sure enough, the ambulance rounded the corner and half a dozen neighbors came to huddle around the ambulance and worry. Claudia, God bless her, barged right past the EMT's to see if she could help.

So off to the hospital I went, giving the royal wave to neighbors as we bumped out of the village. [As an aside, if you have never ridden in an ambulance, and I hope you never do, the ride is very, very bumpy.] Sometime in the middle of all the chaos I had managed to call Meg, too, because she called Peggy, who
eventually arrived join me at the hospital.

We arrived at the ER to discover the waiting room overflowing, every cubicle filled, people lying on gurneys in the hall, nurses looking stressed, and the triage nurse frantic. She looked at me for 30 seconds and gave me my first big break of the day. She told the EMT's to take me right into Fast Track. As I got on the gurney, I began feeling silly... I shouldn't have called 911, I shouldn't make a big deal about hitting my head, there wasn't that much blood...

Peggy arrived and told me to shut up (that's what friends are for), and soon after, the doctor came in and said the same thing, only more nicely. He asked a lot of questions, peered at my head, and announced I had a mild to moderate concussion and needed stitches(!) After rummaging around looking for the surgical stapler, he gave up, and actually put in three stitches. Soon after, I was out and on the way home.(This is Fast Track at its best, but, alas, one needs to arrive by ambulance to get into Fast Track quickly!)

I did actually make the third venue of the party, clean, but scraggly haired, in smaller sweatpants, but size 5x on top, so I didn't have to bother my head, no make up, wearing white socks and Birks, with a headache to end all headaches, and Peggy along to prop me up. I made a quick round to tell everybody that I was okay, while Peg ate some dinner, then retired home quickly to my recliner, where I am still sleeping these days.

Such was my exciting event. Rather different from the one I had in mind.

I am still grappling with this, my third trip to the ER due to bloody falls in the last year. I have ordered an emergency button to wear around my neck, which will be good if I ever fall and am not able to get up, but does nothing to stop me from falling. I am unwilling to say so to Meg, who worries way too much about me, but I'm falling way too often, and (so far) none of the dozen or so doctors I've talked to have as much as a suggestion to help-except to be careful.

And I am!

Unfortunately, it's just not possible to be aware every minute. Most of us spend a lot of time spacing out as we move from one room to another, or reach into the cupboard. And as soon as I drift a bit, my feet start drifting, too, off to one side, or backwards, because I have no sense of my feet, and where they are. This leads to not having a real sense of where I am in space, a dangerous thing, in my experience.

And this does not take into account of my BP which drops twenty points when I stand up. This is easier to deal with- I just stand still for ten seconds until the dizziness passes. Except when I'm in a hurry and forget. But really, I'm much better at this than thinking about every step. My cardiologist actually put me on meds to raise my blood pressure, but it hasn't helped.

And such is life. I keep reminding myself that although I didn't have the
experience I wanted, I'm still free from my stay-at-home constraints. I am not exactly jumping with joy in my life, but tomorrow I will drive myself to p.t. again. Maybe by next month I'll be strong enough to put my walker into the car, so I can go walking at the Casino or mall. By spring, I'll be into onto other things. And if I fall? I'll haul myself up, once again, and keep going. As usual.

Blessings, Margo

Saturday, January 06, 2007

Happy New Year?

Happy New Year to all. I have been browsing around the Internet and lots of people are making resolutions, optimistically looking forward to all the possibilities the years will offer. Needless to say, I am not one of them.

I know that Warrior Woman, that part of me that keeps me moving forward no matter what, is alive and doing her job. I am doing my physical therapy exercises at home as well as at the p.t. office. I've tried driving a couple of times, but still don't feel safe, so I have accepted another week or two of being home. I am thinking of places I can walk once I'm free to drive again. I have even answered an Internet match e-mail.(Thank you, Becky, you didn't think I'd take up your suggestion from several months ago seriously, did you?) But of course, I can't drive yet, so I can't get out there to meet anyone yet.

But I am not filled with enthusiasm about anything-a sure sign of depression. I am once again in the dark pit, and have been for quite a while. I am quite able to put on the happy face for a few hours, a day here or there, an entry or two here, but afterwards the smile goes and I am left alone in my house, with nobody to talk to and nothing to do.

Meg calls with questions about what to do in her life, and when I have asked her to take me to a doctor's appointment, she has complied. But if I ask too much, she makes me aware of it. Peggy calls most days, and drops by for brief visits on the weekend. I go for physical therapy twice a week. Other than that, I am alone at home and talk to no one. The days are long and the nights are filled with HGTV and the Discovery channels.

I rarely fall into blaming myself for being alone anymore. I do not believe it is something I do or did, or that I am unfriendly, or not worth being friends with. I know my strengths-compassion, a nonjudgmental attitude, self-awareness, inner strength and a stick-to-it-ness that kicks in whether I want it to or not. I know at least some of my faults-I am neurotically early, I am afraid of peoples' rage, I am such an introvert that I have to retreat to know what I am feeling. And perhaps worst of all, I was born with my cup half empty. Telling me to be optimistic is like telling a chronic depressive to just cheer up.

But none of this explains why I am so alone. People who have partners or families or friend they go out with or coworkers they like have no idea what it is like to speak to no one for literally days on end. No, this is not a pity party. It is a form of musing, to put life into perspective.

I think I am alone because life, the universe, fate, the gods, the Goddess, whatever, dealt me a series of long term blows and I had to let go of everything to concentrate on survival and then healing. There is no great plan to teach me some big lesson, although I have learned some things about myself, loyalty, and courage. There is no big reason, no Goddesses or fates or fairies who stepped in to smite me down like God did Job. It all just is, and I cannot fix it right now. I can only keep going as I am.

I cannot screw up much enthusiasm this New Year. Each of the last three years has been miserable in its own different way. And I have kept on keeping on. I will do the same this year, blindly believing that things can only get better...or worse. Either way I will keep on keeping on.

Blessings, Margo