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The other day, I was rooting through my recent archives to find a post in which I had dissed The Lord of the Rings so I could put a link to it in Friday’s post. I never found it, but I did find several posts about my inability to stop being busy, the ever-present threat of injury due to my inability to stop and it became apparent to me – for perhaps the 437th time – that there is a real gap between the expectations I have of myself in terms of what I need to get accomplished in a day and my ability/energy level. And it’s not just that I’m addicted to Getting Things Done (which I am) or that I put more things on The List than I have time and energy for (which I do) – I think there’s more to it.

How do you accomplish a life when you have the energy level of what used to be called an invalid? There’s a reason they used to be housebound, at most wafting delicately from bed to divan, perhaps doing a bit of embroidery or reading. It’s because people with a significant degree of impairment and pain have less energy (yes, I know it sounds obvious, but I have to remind myself of this almost daily). At some point I estimated that on a really good day, I probably have half the energy of most of the able-bodied people I know. And if I listen to my body, I would waft delicately from my bed to the living room in front of the TV and back again.

But I don’t, as sitting around being disabled all day would bore me senseless and result in severe depression very quickly. So you make a life. A life that may not be as busy as other people’s (although it certainly feels like it), a life that may at times not look like much of a life, but you squeeze whatever meaning you can out of the day, in between the Mandatory Rest Periods, the medical appointments and tests, the hours spent on the phone persuading various bureaucracies to give you the help that they are mandated to give. Having a chronic illness or disability is in itself a full-time job. And after that, there are friends and family, work, even if it’s volunteer or part time, taking care of your household and the cat and all of a sudden, I realize why I’m so tired all the time.

But how do you balance it? Because the solution can’t be doing less – okay, so maybe doing a bit less would be a good idea. But what do you give up?  The medical stuff is mandatory, but in order to connect to the world and feel like a real person, things like friends and family, work, buying groceries, taking care of the cat, etc., are equally necessary.

And here’s the other thing, the real stuff underneath it all. Because when you live with a degenerative disease, you know that each remission, each calm period is temporary. That the only constant is the disease. You know that the meds can stop working, the disease can decide to start flaring and you know that this can happen tomorrow. You hope it won’t, but it doesn’t take very long before you realize that there is another shoe and that it will drop.

It’s hard to remember to pace yourself when you live with a shoe above your head and so, you try to pack as much into every day, every week as you can, because who knows when you’re going to lose two years to sitting still. Unfortunately, doing this virtually guarantees you a ticket on the injury train, but it’s hard to remember when you have a list and a life, obligations and responsibilities and the desire to live the part of your life that isn’t sucked into the medical field.

How do you change your thinking from short-term to long-term when years and years of this have taught you there are no guarantees?

There are no guarantees for anyone anywhere – all it takes is a slip off a step, a car accident or the detonation of a timebomb in your heart, but most people don’t think of that. Most people pretend that nothing will ever change, because you have to live like that or go mad.

But when you have lived with the certain knowledge most of your life, it’s almost impossible to pretend that everything will be fine, that your level of health and ability will remain stable, because you have proof over and over again that this is not the case. And sure, you plan as if everything will remain stable, because if you don’t, you end up gibbering in a corner, but still, the activity is fueled by the knowledge deep inside that it could all change tomorrow. So you push yourself to your limits every day to take advantage of the good spell while it’s here, rush through it all, forever fighting the awareness of the shoe dangling above.

Somewhere in your head, you worry that you won’t have enough time, engage in a never-ending negotiation with the universe to hold off on dropping that shoe until you’ve done this, finished that, seen the other thing. And every time your ability drops another level, you rearrange the mental list of what you feel is essential to have accomplished in your life, on some level planning for the time when you can’t, so you can look back and be satisfied.

And in writing this, in unearthing the truth that I prefer to be buried, I realized how much time I need to do what I need to do. And I fear that at the current pace of degeneration, there is probably much less time than that before the shoe drops.

But still. You have to live in hope, in applied denial. You have to believe in miracles and I am lucky there, because I’ve already had one called Enbrel and then I had another named Humira. Amid the fear, there’s a flame of hope and I try my best to look at that light instead of the shoe-shaped shadow on the wall.