What remains of you when you can no longer do the things you do? Some parts of your body that you’re so used to living in hurt, some refuse to function in the same ways. You can’t work, you can’t hobby, you can’t feed yourself, drive a car, use a computer, hold a spoon, shower, watch TV, speak. You spend most of your energy walking to the bathroom and trying to hold a cup with both hands. Thankfully you can walk to the bathroom. Sitting upright is too exhausting.
Your symptoms shift, change, and flip around every few hours or days. Sometimes your memory drops. Sometimes you can hold a conversation. You hit better-ish moments when you can manage to communicate to your spouse what has been off recently. You both learn that demanding, or even asking someone to explain what is up is not always good. Explaining requires energy. Sometimes people do not have energy to tell you exactly what’s up. Answering yes/no questions is a tad easier, but if the answer doesn’t fit into a yes/no format, you can’t get anything across. Most times you can’t even answer yes or no.
Sometimes you run on adrenaline or cortisol, which means you function better for a bit, and then you pay dearly for it later. Seeing a doctor exhausts you so much that you can no longer even attempt to briefly go outside or reheat food in the microwave for days.
You get progressively weaker as the time keeps going on. Week one and two are kinda sorta not too fallen apart yet. You’ve been sick before. You know things don’t fall apart that rapidly if you don’t tend to them for a bit. Your home gets dirtier and messier. It’s much harder to navigate a mess. You struggle finding things. You realize how everything requires energy. Even putting away a cup. Even thinking of putting away a cup. You forget to pay bills. You forget to shut off the tap, and the kitchen gets water all over. You can’t answer the phone reliably because you can’t talk much really most times. You may be able to read email once every few days. Maybe. Sometimes it’s more than a few days. Sometimes your coordination is a bit better and you manage to walk for 3 minutes outside. With support. Once you fall anyway, but there’s a wall nearby to catch your fall, a blessing.
You don’t really look different, except for managing to shower much much more rarely. Which means you look fine, if you looked fine before all this happened. Which means everyone’s reaction when they see you is to note that. Looks can be deceiving. Or we don’t know what signs to look. Or maybe something else. I don’t know. Anyway, people react to you as if you’re kinda sorta okay. Even your spouse and the doctors you have managed to see so far don’t quite get the full extent of the issues. As a result no one is really responding to the full extent of your needs.
You learn to give up things that you thought were your needs, like aforementioned hygiene. You learn to give up being dressed, wearing a bra. You don’t tie your shoes when you leave the house. You sit on that chair for a while bracing yourself before you bend down to put on the shoes. You don’t eat well. You eat worse and worse as both your and your spouse’s energy reserves before all this went down get depleted.
Your spouse is exhausted, being the sole caretaker of a very sick person now. They take some time off work, but your issues do not resolve during that time or even show an upward trajectory. This may be there for a long haul. No one knows. The spouse must go back to work, for the thought of jeopardizing employment now is particularly terrifying.
Neither you or your spouse can make good decisions about how best to handle this situation. You recognize that you are not being optimal in handling this, but you cannot do better. Interestingly, other areas of life remain fine-ish for them and for you. When you sometimes manage to chat with a friend who stops by, you can occasionally ramble on about something unrelated. When you can talk, talking about other phenomena in people’s lives is enjoyable. You manage to help someone with something by talking it out. You manage a brief product design in a conversation. While feeling elated that you were helpful and that you managed to do something, you begin feeling like you’re a fraud. You don’t get why you can manage to do some things sometimes, but others basically never, or at least not yet.
You try to “buck up”. You feel worse, much worse. You learn that it doesn’t work. You thank your past self for freezing some meals. Your spouse is spending more time at work because there’s a spike in need, and they’d really really affect other people if they didn’t. By the time they come home, there is yet more work to be done. Dishes. Walking the dog. Groceries. Tossing out food that went bad. Helping you with basic needs. It’s grueling for them. They burn out, but have to keep going. There is no one else. And explaining all the needs to a new person or hiring a new person is too much for either of you.
You’re surprised at how hard it is to get help. Your family offers to come for a week or two, but your life now is so touch and go, you can’t accept it. You recognize the help has to be completely on your terms, which means very sporadic and on an unpredictable schedule. A visitor a day at most. Some days no one at all. Someone arriving to manage everything and trying to get through a lot will be hugely overwhelming and will make you much much worse. (You feel shitty for declining.) Another thing you realize is that even explaining the intricacies of needs is exhausting for both you and your spouse. Neither of you has energy to spare, but you have reached a kind of an equilibrium. Not truly, because you’re just as shifting in the impact of your symptoms. And the overhead of keeping things together is accumulating. The bills do get paid, but the pile of them is messy and unsorted. The tax season is coming. You can’t manage to deal with that. You lose cards of doctors. You lose notes your spouse took about your past symptoms. It’s somewhere, but neither of you has energy to sort through that.
You’re still confused as to why you can have a nearly normal conversation sometimes, and turn doorknobs sometimes, and walk without holding onto a wall sometimes, but not others. The thoughts of “no one would believe me that I’m sick” come up again.
Your spending goes up, and not just in the medical field. You can’t cook, and you used to. You can’t shop for any basic supplies, online or in person. You lose a money stream and you can’t work on restoring it. These things hit you hard, over and over, but acceptance does come. You feel peace.
When friends stop by, sometimes you have to turn them back, because you can’t handle a person then. Most of the times you can’t arrange the visits yourself, and your spouse does it for you. You have some messages and calls that go unreturned (still are), for all the folks who didn’t think to reach out to your spouse. You feel shitty for what looks like ghosting them. You can’t do better. Some people bring food. You’re overjoyed. Prepared food is magic now. At some moment you have too much food and some of it goes bad. You didn’t think of freezing it.
You can’t plan for anything. You don’t know when you’d feel better enough to walk a tad outside. Maybe in 20 minutes, maybe in three days, maybe more. Same for anything. You have near zero predictability in how your next moment will look. You do not know if you’re improving. Your body’s symptoms constantly change.
When no symptoms have exploded in your life for a few days, your spouse feels better enough and manages to do laundry. Clean clothes are great. You realize how much time is spent caring for your basic needs, and not general chores. The kitchen sink is growing a colony of something. The floor is covered with dog hair and is developing sticky spots. (You feel embarrassed to have folks come as a result.) There’s other needs, too, like sorting paperwork, making sure bills are paid, or grooming the dog, and many many more. You can’t identify what they are because you’re too exhausted to think straight.
You think of asking some friends for help. Someone at some point told you, to just ask for thing when you need them. You keep trying to evaluate just how dire your needs are. Maybe they’re not that bad, no one is actively bleeding or on fire.
You know that people do much much better when asked for something very specific, but specificity of any sort is generally outside of your level of ability. You’re concerned that people will expect a certain kind of interaction from you. You want help, you think that you need help, but the general “help me with something, I don’t know what” is not a thing that is easy for people to deal with. Sometimes you manage to figure out something specific. Your brain then chooses to “remind” you that the general culture is not centered around helping, regardless of the need of the asker. And hey, you know that you look way better than you feel. The brain continues to suggest that it’s rude to ask and not provide an explanation for why you need it. Your thoughts continue to imply your friends will be somehow upset and won’t even come by anymore. You’re still concerned that someone will think you’re not really feeling as bad as you might suggest you are. (The ER experience of a few weeks ago has cemented in that belief. You don’t have the mental energy to unpack your beliefs now; you have to keep running on what you have.) You’re sure some of your friends would handle this just fine at this moment, but you can’t figure out who it would be, because you’re not a mind reader. You’re fairly certain you cannot handle having to explain, without overtaxing yourself, so you don’t ask. You have become extremely risk averse.
The risk aversion and unpredictability of your situation pose an interesting puzzle. When you catch a bit of a break, you eat. Showering and trying to walk are also on the list. What happens when you have a bit more energy? Do you try to talk to someone and be vaguely social? Social deprivation in situations of extreme stress is a not a happy thing, people. Especially prolonged. Do you see a doctor? You can’t predictably make an appointment, and those you have managed to make are exhausting and don’t really result in anything. Do you (if you got lucky enough that you can look at a screen and use a keyboard and think semi-clearly) use a computer to figure out a voice-free setup so your future self may be able to go hands free? Do you shop for a cane? Do you take notes about how you’ve been feeling so a future medical figure may be able to help you better? Do you research alternative medicine? You don’t know how long this window of opportunity will last. Your energy can go away literally any moment. You can’t commit to any bigger task that requires you to go through with it. You need to think of exits from situations before you enter them, because you’ve learned you might be too exhausted to think of a way to do so later. And if you don’t exit when your energy drops, you’re depleting yourself and paying tenfold in future energy. Or your exit is not graceful and has repercussions, like being socially unacceptable, or financially taxing, or incurring more work later. Simple examples: telling a friend to “leave now” mid-conversation, without an explanation; or being unable to show up to an appointment, and paying the full fee anyway. You used to perceive yourself as an excellent planner and predictor of outcomes before, so you try to manage the setup. You take notes when you can both think and hold a pen. You tell your spouse that a situation is to be managed this or that way and hope they remember when the time comes. Sadly you forget the notes exist. Your spouse is not around. Your energy expense did not result in a quality of life improvement.
Turns out you can’t plan for all these because the decision tree is too broad, and your processing energy is limited. You cannot trim the tree. You’re exhausted trying to keep yourself safe-ish and vaguely occasionally functioning. You have no idea how your future looks like, even the very nearby future of next week, so you can’t really optimize for something, because you don’t know what the need will be. Remember, your symptoms shift. You focus on what is in front of you. No future. Or, rather, minimal future. Food. Shower. Walk. Make any decisions or take any actions last minute or drop them. If you don’t have an overabundance of energy for a task, don’t start. Often you don’t get to the graceful exit or useful outcome anyway. Keep focusing on the moment.
You’re now months into this, and you have learned to deal with lacking many things. It’s been a blessing to learn, but the path has been painful. Your sink is still disgusting etc. You still don’t manage to shower most days. No random food or visits for a while now, weeks, as friends have been occupied. You’re sad that so much stuff has been coming up for people you know, you wish things were easier for them. You really want to help, but can’t.
Your electricity dies and it’s not an outage or breakers. You can’t deal with being on the phone or on the computer now, and your spouse is at work. No fridge access, no hot water. You’re lying in bed feeling awful. So glad there’s still water service, so toilets flush. You realize it is the electric bill that didn’t get paid on time. “Shit, did they turn off electricity? How long does it take to bring that back up?” Your spouse eventually comes home, and deals with the electric company. They didn’t turn anything off. “Shit, did something break? I have no energy to deal with not having electric or the impact of a major repair, or moving.” For a moment you feel absolutely terrified, but you can’t think about it because you don’t have energy. It eventually turns out to be external, they replace some components, and you have hot water and food again.
You recognize how close you are to an even more major disaster, because your capacity to handle things is so very diminished and erratic. Any issue will send you into a spiral of even less energy resulting in an even less of an ability to manage. Sometimes it feels like walking on eggshells, sometimes like relying on the grace of the divine. You used to say for years now, “and here, but for the grace of God, go I”, and now you have a wonderful realization of yourself being precisely there, an ever-evolving example. Somehow you feel more at peace on average.
The impact of not being able to attempt influencing much of your environment feels scary on and off, but the confirmation that you did not have that much control if any to start with is soothing. It may not be a widely held belief, but it is working for you. You relax more. The proverbial sink? Still growing stuff. The rest of chores? Still piling. You manage to call the repairman you know. He doesn’t answer the phone. You hope he is okay. Things remain broken. Sometimes you get a fluttering or even a nagging thought of the uncertainty of your future. You try to let it go. Sometimes it doesn’t, and keeps nagging at you, wearing you out. Sometimes this state lasts.
You get fascinated with the thoughts and observations you get throughout this experience. Part of you wants to take notes on everything, because you constantly connect the dots that you would have had to work at before. Yet you have no energy for writing, or no coordination. Having no coordination makes it a puzzle figuring out how to use common household objects with a different set of muscles. Or using objects for non-standard purposes. You think of adaptations that could be made to allow easier use for a wider range of abilities. The researcher in you is overjoyed at the clarity of having a first-person experience, and wishes to make the world a more comfortable place. Part of you thinks of the experience as a cool opportunity. Yet your ability to expand on these thoughts is not there. You let go the idea of capturing them down. Maybe if they need to be back, they will come back later.
You realize you are intensely enjoying your life, whenever not in a moment of acute symptoms, however brief and uncommon those moments are. You recognize how incredible of an experience you have been given. You have become more chill and able to make even better decisions under pressure. There’s a million all-around takeaways, shifts in perspective, and efficiency improvements. You remember going years without much internal change of this variety. You recognize that in an interesting way, you have become a much better worker/friend/human than you could have been without going through this. And at a significantly faster rate than most anything else. Hello bootcamp. Part of you wishes everyone went through this kind of an experience, because it has given you so much joy and curiosity and realization. Part of you wishes no one would ever face it, because it is incredibly physically and emotionally painful at times.
My experience is not over. I have a different set of symptoms right at this moment than when I first went to the ER with, or that I had a week ago, or a day ago. I am nearly constantly exhausted. I still look the same. I have once again managed to both remember and to actually be able to water the potted plants before they died, and was very happy about it. My spouse has not gotten a haircut in months, now sporting a shag of sorts. The dog is ever-happy and takes the best care of me a dog ever could. The complexities and tasks mentioned above, and many many more, are still very acutely present. I keep re-realizing that I cannot act somehow better than I have been. I continue to really enjoy visits when folks drop by. So does the dog.
I pondered for a bit, and I don’t really know how to summarize my current life experience. (I am also exhausted and had to stop writing.) It’s too messy and a tad unwieldy. Spending more time with the experience hasn’t made anything easier to describe, be it symptoms, or impact, or implications. Perhaps someone else would have had a better way with words here. I am beginning to believe it doesn’t need summarizing. Life presents us with many unclear events, as much as we humans like to make sense of things and put them into neat words and summaries, with takeaways and future action lists.
I hope reading this gives you whatever you were looking to find.
I realized I never actually answered the question I posed at the very beginning of the essay. Perhaps I will address it later. Or you can inquire within.
Speaking of energy levels and randomness, I am frankly amazed I just wrote so much, despite having to stop semi-abruptly at the end. Full sentences! Now tired.
Love you all. Do continue to feel welcome to stop by. Do continue to assume nothing, I know I am learning.