Ten years ago on this date (according to Facebook), I got up at 7 a.m., hauled everything out of my garden shed, hosed it out, scrubbed down the wood with Murphy’s Oil Soap, rinsed, swept out the water, and left it to dry, whilst going in to make breakfast at 9:15. Then I spent a little time putting the tools back in the shed. At 11:00 I showered, dressed, and went to work at the library from 12-9, including running one of my three teen book clubs that evening.

Today I heaved myself up off the sofa at 9:30 a.m. (after four meager hours of sleep), grabbing onto the coffee table for balance, stood for two minutes shifting from foot to foot while waiting for the excruciating pain in the back of my knees to subside enough so I could drag myself to the bathroom, then spent half an hour organizing a breakfast of scrambled eggs and tea. After breakfast I shuffled my way to my office with the assistance of a cane in one hand, the other grasping at furniture and door frames, sat down at the computer, and clicked on Facebook to review my memories.

I never thought, when I retired just five years ago, that it would come to this: Locked inside a gigantic and ever-expanding body, with lobes and pockets and slabs of granular, fibrotic fat immune to diet, and legs swollen to three times their size. Essentially locked inside my house as well, because I can’t negotiate three steps down and three steps up with my damaged knees and my puffy feet. Unable to dig my garden, or take a walk, or go out sketching, or meet someone for breakfast. Unable to work or travel. Unable to even read or paint for more than an hour at a time, because my tired brain won’t stay focused and my knees won’t allow me to sit still for longer without punishing me for it.

You don’t know what’s coming to you. So don’t wait until you retire to pursue the things you love. Don’t put things off, thinking there will be plenty of time later. Don’t take anything for granted. And certainly don’t put any faith in either your own efforts or the healthcare system to save you from the unexpected.

Yes, I have occasional good days, when I sleep the night before and wake up feeling rested and alert, when I can persuade myself to pursue all my routines—from lymph clearance to compression wrapping to standing on my vibration platform or doing a tentative dance routine with Body Groove. But all those things are in service of maintaining my current, piss-poor status—they’re not going to cure me. Apparently there’s nothing that’s going to cure me, except maybe taking a medication that my provider is denying me for no good reason, and even that isn’t a guarantee. It has worked miracles for some, while others are apparently immune to its benefits. I haven’t had the chance to find out yet. But if I do get that chance, and it doesn’t work…is this my life? This or even less?

Yeah, I know there are lots of people worse off than me. Worse off physically, and also with fewer resources, less comfort, less of everything. Knowing that doesn’t change a thing. I feel betrayed by my body. I feel bereaved of my plans. I feel despair for a good part of every day. I have never been the most cheerful person, but I have always been optimistic. I have never, ever been a person who, no matter how down I was feeling, considered ending my life. I still don’t. But I wonder now how much worse it will get and, when it does, whether that will change.

I’m going to spend my day trying to do some things that are a stretch for me. I’m going to clean some things out, throw some things away, and give some things to people who can make good use of them, because I want to live in a less chaotic environment and be better able to negotiate the things I can do. I’m going to wrap my feet so that on Saturday I can put on shoes, and I’m going to get Home Depot to deliver some leather gardening gloves that will fit over my swollen hands so that I can go out with my walker on Saturday and try to prune my roses. But 10 years ago, I would have gotten up at 7 a.m. and driven to Home Depot for supplies, then spent the morning spackling, taping off, and repainting my bedroom, because that’s what you do when you want to and nothing is holding you back. And I’m really, really angry and sad that I’m not doing that.