Someone asked me recently how I juggle everything. Well, I am not sure juggling is the right word since I have more conditions than the world record for items juggled, but it will suffice for now. And that doesn’t include the rest of life: job, family, friends, bills. I had never thought about that specifically, but I knew exactly what to tell her: the hierarchy.
Now, I don’t have as much “the rest of life” as most people do. I am unattached with no kids (accountable to no one suits me just fine) and I am my own boss, so those pressures are self-imposed and easier to deal with simply because I only have to figure out how to deal with me, and most of the time I can figure out what I’m thinking. (Clients cause a little stress, but more because I want to be sure I am meeting their needs than struggling with complicated work environment.)
The medical part of “the rest” – it’s a lot. But like any structure, it builds brick by brick. Sometimes, those bricks are shoved haphazardly into whatever blank space is closest until they can be dealt with while more demanding conditions (or aspects of life) require the spotlight. In moments of quiet, including sleep, showering, and daily commutes, each condition finds a home in the structure, depending on what it needs compared to the others. That brick placed wherever there was room could stay there for years until one day the symptoms become more pressing than those of all the other conditions.
For example, my peripheral neuropathy is 90% recovered, but every once in a while, there is a nerve cluster in my left big toe that will decide to fire every few seconds (roughly 14, I’ve timed it) for hours. It is incredibly painful, and suddenly it becomes more visible and demanding than diabetes, plantar fasciitis, trigger finger, and all the others that take regular attention. When this happens, it shoots straight to the top of the hierarchy. Topical creams and rubbing don’t help. Painkillers, either. When it was new, I took medication that blocked pain messages between the nerves in my feet and my brain, but it doesn’t make sense to take a drug regularly for something that happens fewer than four times a year. (It’s a build-up drug that would take a few weeks to become effective.) The only thing to do is to try to distract myself while I ride it out.
And then it’s done. The neuropathy settles back into its usual spot and all the more regular demands go back to their usual places in the hierarchy. It is a nimble structure. It has to be if I am going to shift quickly enough to give each condition the attention it needs, and limit negative impacts like lack of sleep, which will irritate all the others.
The more this happens, the easier it gets. Familiarity with your body, your condition(s), and how the two work together helps patients put their conditions at the right levels of the hierarchy. Eventually (hopefully), it becomes a seamless, unconscious process.
Millions and millions of people have the same kind of structure, whether they are aware of it or not. It’s how all of us deal with life, I think. I am not sure there is any such thing as a whole life, especially a patient life, where there aren’t sudden shifts in priorities. Sometimes these shifts, or just the multitude of things that has to be managed, mean that some of those conditions have to fall by the wayside. There’s nothing wrong with that. Each of us only has so much energy, and spending it on the neediest, whichever that might be the only way to stay sane and functional.
(This is why my collection of conditions is best represented by a monster that lives under my bed, especially since I started as a kid. Diagnoses and flare-ups are big and ugly and scary, but with management and familiarity, the monster becomes comfortable, familiar, and maybe even cute. Sort of.)