It’s been a couple of years now of worsening symptoms and issues, and I am still not understanding how people do this. I mean, there are people with much worse disabilities than mine, who are still working full-time and keeping things together, so why am I finding this so ridiculously hard?

I’m used to being able to jump out of bed, get dressed, and walk out the door without thinking about things like how difficult it will be to go down those steps and whether I will be able to navigate them back up again, once down. I’m used to being able to take a long walk, or meet the Urban Sketchers for a morning of sketching on location—difficult parking be damned—and cooking in my kitchen without rest breaks. I’m used to pulling the hose across the yard and standing for 20 minutes to water the zinnias and roses, to irrigate the herb garden and the “orchard” by running back and forth from the house (and up two steps) to move the hose to a new position four or five times.

But now, suddenly, everything is a hurdle. I wake up in the morning and struggle to get my feet out from under the covers and into my flip-flops. I mentally and physically brace myself before standing up for the first time, because if I don’t, I’m likely to fall back onto the bed when my knees don’t respond properly. I stagger into the bathroom to use the facilities, and then I have to check off a litany of tasks: Take off old bandages, wash my leaky leg, and put on fresh ones, which entails getting into all kinds of contorted positions as I struggle to get the bandages to stay where they’re put while pulling a stretchy sleeve over them to hold them there. Maybe I also need to change clothes, or to comb my hair, which I do now while sitting down at my desk. Then I have to feed the cat (and currently give her meds via syringe).

I put on my Beltwell compression leggings and stagger into the kitchen, aided by my cane, to make breakfast. It’s hard to cook with one hand while holding yourself up with the other one braced on the cane handle, so I try to make as few movements as possible back and forth across the kitchen while assembling all my ingredients from cupboards and refrigerator, then lean the cane against the cabinet, lean myself against the cabinet, and do what it takes to get the water boiling, the raw oats and salt into the pot, the walnuts and tablespoon of brown sugar into my bowl, in preparation for finished oatmeal.

While I wait for the oatmeal to cook (six minutes), I go out to the living room, turn on my vibration platform, and vibrate my lower legs for five minutes, while doing manual lymphatic drainage massage on myself in the six primary positions, then using a roller on my knees to loosen them up for walking. (I repeat this at bedtime to stave off Restless Leg Syndrome the minute I lie down.)

I eat my breakfast and read my book—a simple prospect unless I have forgotten my glasses in my studio or my book in the bed where I was last reading it, and then I have to fetch them, caning my way haltingly through three rooms while clinging to the furniture with my off hand.

After breakfast, I have to decide what to do next: Check my email? Do a little work, i.e., bill-paying, or going over lecture notes for my upcoming UCLA classes? Prepare to paint a portrait? It really depends on the amount of sleep I got the night before whether I do any of those things or simply end up scrolling Facebook while my mind wanders.

On the days when sleep has been elusive (i.e., four hours between 4-8 a.m.), I find myself, multiple times a day, sitting wherever I have landed, staring off into space, perhaps rocking back and forth in somewhat unconscious preparation for rising up from my seat to…do what? I don’t remember.

I make lists of physical tasks that need accomplishing, and some days they are doable and some days not. I grab a big plastic trash bag from the box sitting on the arm of the sofa (a central location) and make the rounds of studio, bathroom, bedroom, dumping the contents of the cans into the bag, then hauling it out to the living room. Then I do the same in the kitchen (two bags of trash, and a bag of recycling), but I have to pull my wagon (a recent purchase designed for transporting stuff around the house) along with me to put the bag in when I’m done, because kitchen trash is heavy, containing as it does the stuff I have cleaned from the cat’s litter box into plastic baggies before dumping it in the kitchen bag.

I drag the wagon with the garbage bags in it out to the front door, open it, and pitch them onto the porch. I used to descend the one step from the door to the porch to put the bags into the trash cans, but I have gotten both cautious and lazy about anything to do with stairs, and the kid who now comes on Monday and Thursday afternoons to water my garden will pick them up from the porch and put them in the cans for me. Later in the day on Tuesday, my neighbor Phil will come over and wheel the bins out to the road for pickup.

I may do a little sweeping, in the interest of preserving my own well-being, because the cat tends to kick litter out of the box, and putting my cane down on a bit of it either on the hardwood dining room floor or the slick linoleum of the kitchen means a moment of adrenalized panic as the cane slides out from under me and I flail my arms to keep my balance, hoping to connect with a doorway or a chair to hold me steady.

I use the wagon to carry dishes from my coffee table, where I often eat my dinner (and sometimes lunch, if I’m being self-indulgent about television viewing), into the kitchen so I can transport them all at once; otherwise, it’s cane in one hand and one solitary dish in the other, because I can’t carry much weight while still maintaining my balance. Dishes get done a drying rack’s worth at a time, and they’re never done altogether, although I manage to keep things liveable.

Painting is a positive for me—both an escape and an accomplishment—but I have to constantly remind myself that I can’t do what I used to do, which is to get so socked into the process that I didn’t rise from my chair for three or four hours at a pop. Now, if I do that, my knees simply don’t work for about the first 10-20 steps, and I have to put my cane in front of me and bear down with both hands while I shuffle along until my legs wake up again.

Along about 4:30-5:00, unless I’m engrossed in a painting (or playing Words with Friends with my five regulars), I start running out of steam, and the rest of the evening involves laboriously making something to eat for dinner, followed by four or five or six hours sitting on the couch watching television, with periodic bathroom breaks. It’s not really what I want to do, but my brain at this point can’t function well enough to suggest some other activity.

Thanks to Kirsten I have started an exercise regime again; I can’t do a lot that involves my legs—they’re too heavy to lift, and too overburdened to carry me all the way through a dance routine—but after hearing anecdotal evidence that working the upper body will make a difference even if you’re not involving the rest, I have been doing arms-only stuff like jumping jacks and punches and such during all the commercials.

So…I return to my original paragraph at the top, which is, how does one not only become accustomed to one’s limitations but manage to push beyond them at some point and reclaim a worthwhile life? When 80 percent of your actions or activities are simply in service of survival, it’s hard to keep an attitude that life is worth living.

I keep investing my hopes in various remedies and procedures, and keep ending up disappointed and disillusioned. The vibration platform, while helpful for combatting RLS, doesn’t seem to appreciably help with recovery. The massage gun isn’t making a difference, and nor are the “squeezie pants” that I believed would be my salvation.

Currently I am taking a drug for my AFib that causes even more swelling and inflammation in the legs than I already had, and my hope is that having the electrical cardiogram procedure (scheduled for November 21st) will jump-start my regular heart rhythm and allow me to quit using the pills, but there’s no guarantee. Surgery for the lipoedema seems like such a long-shot in which to invest my faith that I’ve been avoiding even thinking much about it; the recommended doctors are few and far away, the closest being in San Diego or San Francisco. Kirsten said she’d go with me and hey, let’s take the train! which sounded really fun, but the thought of arriving at the station and then having to rely on the possibility that I can lift my legs high enough to get into an Uber to ride the rest of the way to the doctor stops me mid-fantasy.

I keep thinking to myself, “Something’s gotta give.” But…does it? Maybe not. Maybe this is it. This or worse. Yeah, way to bring down the room. Sorry. I just don’t know how other people keep going, keep positive, keep involved, refuse to allow whatever is challenging them to make their world smaller and smaller, like mine has become. Any thoughts here?