What It Feels Like to Have Chronic Fatigue
I'm writing this because people ask me how I'm doing. This is a good overview of how I am doing right now. I think people resist telling the truth about how they are navigating their life because they are afraid it will sound whiny, negative, silly, weak, self-indulgent, self-obsessed, first-world- problemish, etc. Well, I guess I accept that it should sound that way. I do have mental illness. I do have a bad attitude. I feel really bad about that and ashamed, which of course just contributes to the problem. But this is the truth.
I can only talk about what it feels like for me to have chronic fatigue. I am very usual in some way and very unusual in other ways. One way that I am usual is that I have a collection of symptoms that are very typical of "adrenal fatigue" and anyone with a multi-system breakdown. For example, I have gut problems, brain problems, hormonal problems, musculo-skeleto problems, etc. These symptoms are not mysterious at all. Millions of people have them. Estrogen dominance, food allergies, leaky gut, high and/or low cortisol, autoimmunity, thyroid problems, SIBO, candida, parasites, methylation issues, heavy metal toxicity. I have most of those things. They are a common pattern.
Getting diagnosed with those things is only one piece of the puzzle. Treating them is another. You'd think that if you put something in the body, it would have to have an impact. After all it isn't just a black hole. But one way that I am not usual is none of my problems ever seem to respond to anything. It hardly seems to matter what diet I am on or what drugs or supplements I take or who I'm seeing for help, the problems stubbornly remain exactly the same. Sure, you can give me a massage. I welcome it, but when you finish/get bored and ask, "Does that feel better?" the answer is always going to be, "No". It feels good to be touched but it isn't going to release those knots. Epsom salt baths or, even better, magnesium chloride? Ha! My demons chuckle as that expensive water swirls down the drain. Those are just random examples. The number of times I've baffled a confident practitioner, someone familiar with exactly these sorts of cases, with my utter non-responsiveness is many.
One reason I quit doing herbal consultations is because people would come to me and say, What should I take for a headache? What should I take for a UTI? What should I take for this rash? My insomnia? Depression? And I would tell them, "Well, this herb is supposed to work for that. Try it and see what happens." Sometimes they would say it helped them. But I have all of those problems, plenty of time to experiment, and no herb ever worked for me, NEVER, for anything. Can you blame me for not wanting to continue?
So what happens when it feels like you can't control your reality? When your actions and efforts don't matter? When you can't even find a temporary palliative? When you lose your sense of agency and faith in your ability to improve your own circumstances? You go crazy is what happens. You become fatalistic, apathetic, angry, and depressed.
A Day in The Life
If you are healthy and you want to imagine what my day is like, imagine what it feels like when you've had a bad day. You're depressed, you're ashamed, embarrassed, guilty. Then imagine an anxious day: say you've got a big project due and a lot to complete, a job interview, a public speech to give, or something terrible to confess. Then imagine what it feels like to have a cold or flu where you body is just achy and you feel inflamed, and your immune system is fighting, and you just want lie down in bed or take a hot bath. Then imagine what its like to have only slept for a few hours. Maybe because you were out drinking all night, so you stomach isn't quite right, and you've got a headache. Then put them all together and imagine that is how you feel every day, all day. Month after month. Year after year, with no improvement. That's about what my chronic fatigue feels like.
Buuuuuut you aren't so bad off that you're confined to your bed or need a wheel chair. You mostly look normal when you brush your hair and put your clothes on. Its hard for anyone to understand why you can't just get it together. To them you may even look happy. Don't get me wrong. I'm glad I'm not bed bound like 25% of CFS sufferers, but being invisibly disabled comes with its own set of problems. One statistic I read that has stuck with me is that the typical CFS patient has a quality of life similar to an AIDS patient in their last 6 months of life.
One thing I hate more than anything is when I say, "I'm never happy," and people say,"Yes, you are." I literally don't know what they mean. When? Why do you say that? Because I made a joke? Because I smiled? I think happiness is a core feeling inside, not a superficial feeling, and I don't feel it. Ever. I have not felt it once in 15 years except for that one time I went to the dentist after years of avoidance and brushing with sea salt, if I brushed at all, with the dreaded anticipation I would have a ton of cavities and I still had no cavities. For a few brief minutes as I skipped down the sidewalk back to my car I was relieved. I was light. I was happy.
I can be pleased, maybe even excited. But the feeling tone of my tissues in my chest is dark and dense. Lying next to a new lover I may feel drugged, as if on opiates. My favorite lovers were the ones who made me feel the most drugged for the longest time (even if they were bad for me). Mmmmmm. I dreamed about one of them last night. But make no mistake about it, even in that moment I am distracted by the crushing weight of my core unhappiness.
If you still insist that sometimes I am happy. I will concede this. It may be that happiness and unhappiness are not mutually exclusive but run on separate tracks. It may be that sometimes my happiness track jumps to a level of say 5 out of 10, but as long as my unhappiness track remains also at a 5 out of 10 or higher, I have no net happiness. Thus my insistence that I am never happy.
The morning is my best time of day. When I wake up in the morning I have pain right away, usually in my right hip, neck, and shoulder area these days. Except this week it is worse in my left shoulder because I dislocated it. Again. It's usually after a few hours of tossing and turning and trying to get in more sleep that I know I'm awake for good. I don't sleep well after dawn hits so I have blackout curtains, and an eye mask, and try to have lights out by 9:30 pm (which I often fail at). Even so I still roll over a dozen times during the last few hours of sleep.
This is all assuming I fell asleep properly and slept through the night, except for my nightly trip to pee around 3 am. Sometimes I have trouble falling asleep, and/or can't get back to sleep for several hours after that bathroom trip, partly because my gastritis in my stomach starts acting up causing a distracting burning pain and burping.
I may have to get up and eat something to dull the pain although I'm not hungry and it's cold out there and all I want to do is go back to sleep. This is particularly annoying because the quantity of food has to be relatively large to do the trick, yet I can't just grab a granola bar or throw bagel in the toaster. I can only eat low-carb foods like meat and vegetables if I don't want to fuck my life even more. I know I'm being inconsistent. I said diets don't matter. The explanation is I've gotten more sensitive over the years so my symptoms require more restriction to remain at the same level. I also take into account external synchronicities related to eating that I wouldn't have considered before. Sounds schizo but I've seen my water heater break enough times precisely when I was being indulgent that I no longer doubt.
Anyway, back to my point, which is who wants to cook a steak they aren't even hungry for at 3 am? These days I end up grinding some flax seed in a coffee grinder and downing it in a glass of water. It swells up in my stomach and that helps. The effect doesn't last long, but it is the easiest thing I've found for quick relief, and I've tried a lot of other things.
Having something important to do the next day that I can't easily get out of, like having to go to a job, or a meeting with someone new, or an appointment virtually insures that I will wake up and not be able to go back to sleep. I don't handle obligation well.
Usually its mental stimulation that keeps me from falling asleep; positive, creative stimulation like a writing project. It's best if I stop such activities two hours before bed and just take a bath, read, or watch TV to wind down.
Sometimes I wake up a bit too early, maybe 5 or 6 am instead of 7 or 8. Then my body decides it is close enough morning and my bowels start to move. I think they must be unhappy with the allergenic or poorly digested food or byproducts from infectious bacteria that have been stewing in them all night because they are always really raring to go. It's difficult to fall back asleep if this happens because they tend to move two or three times about 20 minutes apart until they've gotten all that junk out. It isn't diarrhea by any means but I don't think its quite normal.
I can usually predict what kind of day its going to be based on the reoccurring themes of my dreams. If my high school crush likes me back in a dream its gonna be okay. If I crashed my car in the dream, not so good. Whatever happens, even on the best of nights, I awake tired, but if I have slept less than 8 hours or have slept more than 8 hours but the sleep cycle was interrupted, say I was awake at some point for more than 5 minutes, I also feel nauseated. Nine hours of sleep is the ideal, though I'll sleep 10 or 11 if I've had a few bad nights in a row.
I don't really want to get up, but I know that prior to noon is my best chance at productivity, so I typically get up right away. I turn on the phone and check my email/social media with mixed hope and dread. I'm not usually very hungry but have to eat very soon after waking up to keep my blood sugar steady and my stomach pain/gas at bay. I may buy myself an hour or two by preparing a bulletproof-type blended fat drink...minus the dairy which I'm allergic to, caffeine which I'm hypersensitive too, and MCT oil that gives me the runs (ha, what is it made of then!? Someday I'll give you the recipe).
Then it's time to strategize which things I am going to try and get in before the fatigue really hits. Walking the dog for a mile or two is always a nice one to start off with, but I only do that every few days at present because of feeling pressured to do other projects. Both my pup and I would prefer to hike for an hour every day (though some days my hip pain is too severe). Unlike typical chronic fatigue or fibro folks, I don't get a big backlash in my fatigue or pain levels from exercise. If a normal person starts out peppy and feels slightly tired after a workout, I start out feeling slightly tired, and end feeling slightly more tired. There is no danger of "overdoing". I don't always want to go on a walk, but as far as all the possible things, its one of the easiest and most pleasant for me to have to do. I love the sunshine, and I listen to podcasts on topics of interest and take photos of flowers and the landscape and my dog looking cute, so I'm never bored or lonely.
I've always had a secret ambition to take up ultra running, even just for one race, and to then write a memoir about the intersection between that and my illness and call it Running a Fever.
In fact, I must stand and move about and get exercise during the day if I don't want to feel absolutely horrible. I believe my blood must be stagnant and suffer from poor oxygenation or something like that because I feel terrible lying around. Being ordered to bed rest would be a dream guilt-wise because I constantly feel the pressure to be more productive, but would be hell body wise since I can barely handle a 60-minute massage without feeling more achy at the end. My muscles become intolerably painful if I spend all day on the sofa, or in bed, or on the computer. I must constantly shift position and intermix seated activity with standing activity. I find a light jog, something that really pumps the blood, to have a slightly better effect in that regard than walking, but I don't always have the energy for it.
We walk in the desert, my dog and I, where I am sure there are no people or other dogs because she is big and strong and overly enthusiastic about greeting others and she pulls on the leash despite no-pull harnesses and that makes my delicate body sore which makes walking her stressful instead of stress-relieving. So we don't do leash walks. I don't even carry water on walks because it hurts. This is one small way in which my illness perpetuates my isolation, because if I had more energy to train her properly or to simply be able to withstand a little tugging without my trapezius knotting up for days, I would hike some of the hundreds of trails in Sedona where I might just run into someone, ya know? Like a hot, dog-loving outdoors guy. Or a hotdog-loving outdoors guy.
The Cooking and The Cleaning
I tend to be especially prone to a shaky overwhelm during the morning. It always feels like there are a million things to do, and as I prepare my breakfast my hands tremble and I drop things, and then those things make noises and scare me because I have PTSD and so I and shout "Fuck!" a lot. The million things don't go away at other times of day, but my body is too fatigued to respond to them with the same level of anxiety.
What are these million things to do? Well usually the kitchen is dirty and the counters are stacked with dishes from a half dozen other meals I haven't cleaned up (my landlord is supposed to buy me a new dishwasher, but he's terrible). Maybe if I've had a string of bad days there are even maggots in the sink and moldy items sitting on the counter and chicken liver blood dripping down the cabinets, and some juice from a bag of melted blackberries I forgot to put away surrounding all the condiment jars, and then I'm cooking something new on top of all that because I'm hangry and need food NOW.
I have to cook everything from scratch due to my food allergies and my diet is so limited that I get sick of eating the same foods all the time and am hungry/hangry often. Staying fed takes a lot of energy and brainpower. So my mind is swirling over what to cook, what to thaw out to cook later, and what is going bad that I need to throw out or figure out how to cook and make appetizing even though I don't really want it because I just went through the trouble of thawing it. The compost bucket usually needs emptied, and I'm distracted by how grimy the white trash can lid is, and how I really need to organize the cabinets and make sure the cockroaches aren't getting into my shit.
I simultaneously love food in all of its variety and resent eating. I resent that I don't know what to grow in my garden and sometimes let it rot because I'm always shifting my diet. It's difficult to be a food writer or blogger for the same reason. I resent cooking at all when I have so little time and energy. I resent how hard it is to travel because even at a Whole Foods there is nothing I can eat on the go save for a can of tuna and some raw celery.
Meanwhile, not just the kitchen is dirty, but the rest of the house is filthy too. It's usually pretty organized with every object in its place, so that if you were nearsighted or in candle light you wouldn't really know anything was wrong. The clothes are in the closet, and the books are on the bookshelf, and the bills are in a neat little stack, but it is completely filthy with actual dirt and dog hair. I've only mopped the floors once ever and that was over a year ago. The house could use a full week of dedicated deep cleaning. This always bothers me and yet I never get around to doing it. I have a goal to clean 20 minutes a day (which is actually no where near enough) and at best I do zero minutes for a bunch of days and then play catch up for a few hours.
And that's just the inside. The outside usually needs weed-whacked, and the garden usually needs tended, and the dog shit picked up. All things considered though the outside is usually better off than the inside because I actually enjoy gardening and landscaping and do it voluntarily, which can never be said of housework. Don't get me wrong. I'm completely unsatisfied with the current aesthetics of my yard, which is sort of a weird experimental mix of permaculture food forest (I don't even know why I did that since I can hardly eat fruit), vegetable garden, plants I kidnapped from the desert, and random stuff that caught my eye or was on sale and the nursery. Like I've got a single peony which so doesn't fit this ecosystem or any sort of design, because my grandparents in PA had peonies when I was small and I've always loved peonies.
I wish I had thousands (of dollars, not peonies) to throw into my landscaping, especially to block out the hideous view of the neighbors which is the result of a fuck-up on my part that I won't go into.
But I'm also deeply attached to my garden and spend at least 10 minutes a day just hovering over my plants seeing how they are growing, sort of willing them to do well (though when it comes to actually fertilizing them and watering them, I'm not so good at that). I'm usually drawn out into the warm sun and repelled from the dismal interior of the house. Unfortunately the kitchen, which is chronically the dirtiest room, is also the darkest room.
Even the motions of interior housework compare unfavorably to that of exterior housework. Something about those tiny twistings that occur while standing over a sink really aggravate that nervy hip pain I have in a way that digging holes and lifting rocks just doesn't. It isn't uncommon for it to become too painful for me to stand within just 10 or 20 minutes of indoor work.
Meanwhile home care is just one small aspect of life. There is schoolwork to be done which is currently how I survive (student loans). But the student loans are not enough to cover my expensive sick-person lifestyle what with my high-quality diet, debts from 15 years of being sick and sucking at life, current medical expenses, and living alone because I am essentially allergic to people. I meant that figuratively/energetically, but come to think of it, literally as well. I have to constantly reprimand them for using scented laundry detergent, shampoo, lotion, baby powder, deodorant, and perfume, around me. Unless they are one of my really wild friends. Then I have to reprimand them for wearing smoked buckskins around me which are just as bad, even if the smoke is natural.
So I have to do the schoolwork but I also have to worry about other ways to make money. Applying for jobs I do not want and pray I don't get is usually on the to-do list (only really close by ones of course because my car is busted), along with selling off belongings, and other schemes. Currently I do not have enough money to pay my rent/bills/food for the coming month, and that isn't rare. Running out of money is something that happens every few months. It seems hard for me to heal no matter what but it is definitely harder when your life is always hanging in the balance, and you never feel "safe".
I constantly feel on edge, like everything is about to fall apart if I don't suck it up and do all these things I don't want to do. Because I don't want to do them, but am also afraid of the consequences of not, this results in a standoff where I end up compromising by doing the bare minimum.
Alright, that covered, health, home, and finances, which are all in various states of disrepair, and naturally so are my relationships. I don't really have any. I'm not really into family and I certainly don't have any local relationships. My phone only rings once a month or so, and its usually a wrong number or telemarketer, or the library calling to tell me my books are in, though to be fair I've talked to a few people recently because I've been in a low place and lowered my defenses. They're usually people I've fucked in the past, to put it bluntly. Those are the ones who show the most affection for me and interest in continued friendship even when I ignore them for periods of time. But if I needed a ride home from the hospital after being sedated or my car broke down leaving me stranded on the side of the highway I would just have to call a professional because I literally have no friends in Arizona. None. I dated a local once. We aren't friends anymore.
This doesn't bother me as much as you'd think because I'm naturally reclusive and independent and introverted. I tend to get more frustrated about doing everything myself than lonely/horny. Sex is great, but at the same time terrible. I always get UTI's and yeast infections, and my jaw pops out of alignment, and the orgasms are weak and disappointing and followed by waves of nausea and depression, and I can't sleep and my stomach starts to hurt all of the time because it is just too energetically intense, and half the time the partners aren't that good at it in ways that can't be easily fixed. But no, seriously, it is great too.
I'm kinda selfish. I want someone around to help me more than I want their love or want to love them. That probably isn't true deep down, but that's what it feels like. I want them to pay half of the bills, and cook half of the dinners and mow half the lawn, load up that mattress onto the car, help install that new light fixture. I want to feed off their energy and enthusiasm so we can go on trips to new places. I want to have to try and look good and impress someone better than me so I'm more motivated to wear clean clothes and pay my bills on time.
I'm so irritated that the dump is full of glorious, free garden mulch that I cannot transport to my house because I don't have a truck, and can't afford to hire someone, and, well, to complicate matters I'm allergic to mulch even though its the best thing for the soils here, so ideally the person I'd hire or this invisible boyfriend would spread it out for me and water it down, and in a week the dust would blow off and it would bake in the sun and not bother me anymore. I spend an inordinate amount of time pining for mulch (I think that might be a pun).
I want someone to open that bottle or plug in that charger I just can't get with one hand while I'm trying to drive with the other. Those two things are seriously my darkest moments.
I guess when it comes down to it, I'd be just as happy to be a strong, capable man as to have a capable man around. I'd be happy to be a strong capable woman too, cause while I'm ambitious and independent and do all sorts of weird shit most single females wouldn't attempt, I wasn't raised to build or fix stuff it IS hard on my body. I don't have muscular weakness, but I get super sore, super easily. And yeah it was badass that time I glued my transmission with JB Weld, but there are certain tasks that are triggering to my chemical sensitivity that someone else could handle with much more ease.
I'd like more friends...I think. Friendship sorta confuses me. But not only do most people make my symptoms worse because I'm an empath and sensitive to their baggage, but even if they were good for me, and it's rare to meet someone like that when I have so much baggage myself, I hardly have time to devote to finding them or hanging out with them with all this other stuff going on. When it comes right down to it, I'm tired. I don't want to go out.
Okay, so we've established that all areas of my life are in disrepair from the upkeep of the household to relationships to finances. And don't forget that being ill is a job too. There are notes to be logged on the effects of adding or removing certain foods or substances. There are weird symptoms and new leads for healing and healers to be researched. There's taking all day to drive to the city to see a specialist.
All of these "life areas" and the to-do lists associated with them are typically going through my head as I begin my day, and that is probably why my hands shake when I cook my breakfast.
Now, if it wasn't clear, a big reason there are so many things to do is that everything is in disrepair due to a fundamental lack of energy. The system requires inputs to maintain. If the body doesn't get enough energy for the organs to do their jobs likewise the external life suffers as it is just an extension of the body.
I'll get back to mental problems, but experiencing physical fatigue basically means that your body is constantly asking you to do as little as possible. There is a little voice in your head that says, "It'd be really nice to sit down right now," and then you sit and that voice says, "It'd be really nice to lie down right now," and then you lie down and that voice says, "It'd be really nice to go to sleep right now".
Personally I don't like to sleep too much during the day, and rarely allow it. I'll avoid reading in mid-day for example if I think its going to make me sleepier, but that doesn't mean that my breathing isn't slowing and my eyes aren't getting heavy and my body isn't trying to shut down. Mental work also takes a ton of energy, and so even schoolwork or writing feels disagreeable most of the time. The best I can do is bank on certain obsessive tendencies, probably related to my mental illness. If I can get into a project I sometimes have trouble stopping it, and don't want to do anything else.
You have two choices. You can give into the fatigue and pain and feel guilty that you have all this stuff to do and worried that your life is falling apart because you aren't doing it, or you can discipline yourself and resist the fatigue and pain and keep working. A little discipline is necessary and will leave one feeling more accomplished and less disgusted with themselves, but I find that resisting/ignoring the CFS monster is the fastest way to make myself feel bonkers. It doesn't really make my physical symptoms worse but causes a great schism in my personality with one part feeling like a whipping boy and the other part wanting to murder that part for being so recalcitrant.
I call the balancing act "suffering management". Too far in either direction and suffering increases. I'd say my happy place is spending 25% of the day doing something active, difficult, distasteful, scary, or unpleasant and 75% doing something mediocre, passive, or easy. I think that is actually reasonable. It is just that for most people the bar is set much higher for what constitutes a difficult task. I feel relatively satisfied with my accomplishments for the day if I go out grocery shopping, pay the rent, stop at the gas station, walk the dog, put away those groceries, and cook a meal that takes a little forethought.
Say the typical person who sleeps 8 hours a night has 16 hours available for them to do things. Imagine what your life would be like if you only had four decent energy hours a day to contribute to maintaining your life and finances in any way including cooking and chores, and the rest of the time you were chained to your couch, you were allowed to entertain yourself, and take in information, but you couldn't do anything truly "productive". And of course you're depressed and in pain so the entertainment isn't terribly fun or rewarding. It's just a way to manage. That is what my life feels like.
Except I don't even have a full tank of energy for those four good hours. It's more like from the hours of 8 am to 12 noon I have a half a tank of energy which is optimal for standing tasks like cooking, cleaning, exercise, shopping, or anything that is anxiety provoking and takes mental discipline.
Then from noon-5 pm I'm running on empty which is optimal for nothing really. I typically make lunch and do some vaguely useful internetting during this time: emailing, research, puttering around the yard, cleaning out my dog's perpetually infected ear, that sort of thing. I may be able to continue with something I've started earlier if I got the ball rolling, but I definitely tend to avoid starting the most taxing and intimidating of tasks during those hours.
From 5 pm-10 pm I'm running on maybe 1/4 tank. That last part of the day is optimal for seated labor such as the type of writing I am doing now, but between making dinner and making sure I cut myself off from anything too stimulating in order to force myself into bed early so I can wake up with the light, only a few hours are actually available during the time. I almost never do housework during this time as I have a strong aversion to not being able to see clearly in the low light. I think that struggle to see probably makes my brain work harder and it interprets it as more taxing. Maybe it has to do with safety. I've never been able to stand hats, sunglasses, or hoods. They make me feel disabled because of cutting off peripheral vision.
It's hard to separate the mental and the physical exactly because more energy and less pain does wonders for one's outlook. Having more energy makes you feel like you can tackle difficult (and by difficult I mean normal) tasks, which leads to less frustration, depression, and anxiety about life.
But all of this wouldn't be nearly as bad if there were no mental symptoms to contend with. Let's say you don't want to apply for a certain job because you are tired and know it will be miserable and you'll be daydreaming about being home in bed the whole time and also that it will exacerbate your pain to have to stand on your feet all day. That's bad.
But then add in various mental projections. Anxiety that you aren't qualified, that you'll be bad at it, that the boss and co-workers will dislike you and think you're weird, the customers will be rude and crazy (not altogether made-up fears in my experience). And depression: thinking that you'll hate the job and find it boring, that you probably won't get hired and filling out the application is a waste of time, or that you'll get hired and that it probably won't work out in the end because nothing works out for you (also not altogether made-up).
So you have these harsh voices to contend with at the same time you are already really tired and in pain. These sorts of voices mean I end up procrastinating a lot on the most physically and emotionally difficult tasks. Hell, I even procrastinate about starting seeds, and washing my hair. Showering is fucking exhausting and will put me into a guaranteed stupor.
People talk a lot about brain fog. I don't have much "brain fog" in the sense of memory problems, or difficulty articulating words, or comprehending reading material. I feel as sharp as ever. It's hard to describe because my brain isn't faulty. I could memorize the best strategies for winning at poker overnight. There are no physical or emotional ramifications to that action. But when it comes to real-life, multi-step tasks like mailing a package which will involve locating an address, locating a box, writing a note, and taking the whole mess to the post office; or making a new dish I haven't tried before even though I have all of the ingredients? I don't know if it is just because I have to stand up or because I begin to imagine all the sticky pots and pans and measuring cups I'll have to clean, but somehow that's really intimidating.
What I have the most difficulty with is making decisions and focusing in the midst of competing choices. The problem isn't that my brain lacks in analytical skills, it's that it ONLY has analytical skills and no sort of natural flow or intuition or joy-seeking function. Obsession, apathy, and guilt, those are its primary drivers.
Consequently, overwhelm is my natural state of being. Take a simple task like starting seeds. There is what to start and how much, when to plant them, where to plant them, to start them in the ground or in containers. How will they look aesthetically growing in a location? Will they get enough sun there? Do I have time to dig the beds that need prepped? Will I be able to fertilize them and water them and protect them from pests properly or am I wasting my effort knowing I won't do any of that?
Or take the task of obtaining a job: I could get a crummy local job. I could get an online writing job. I could move somewhere new for a good job. I could write a book. I could make an online business. I could make an actual business. Each of those paths has infinite paths branching out underneath it. Infinite locations to move, places to work, books to write. I have lots of good ideas. Ideas are not, and have never been, a problem of mine. It's following through and taking action that is difficult for me.
Each day when confronted with all these options, my brain freaks out trying to compute what to do. I do a lot of mild hyperventilating and fanning my hands in front of my chest while blowing out long breaths with my mouth in an O-shape. Until the energy runs out and then my brain just doesn't care about ANY of the things. "Meh," it says. "We'll figure it out later". Many days actually start that way.
Some paths are clearly more logical and less risky than others, but have so much fear and dread attached to them that I still avoid them, again compromising or engaging in "suffering management". I go for the second or third most reasonable option, and feeling bad about it all the while. I feel bad right now, terrible, that I'm spending days writing this blog instead of trying to make money or at least doing my schoolwork, although keeping up with my blog has actually been on my to-do list and something I've been avoiding.
Judging by the length of this post, writing clearly comes easily to me, and although it hurts my back a lot I can spend many hours a day doing it. But the moment you attach writing to making money, my mind goes out the window. I no longer feel like I have any thing to say. I start doubting my ability because I've never published anything. I get distracted by the millions of topics I could write about and constantly change my mind. I start feeling like I don't have any time for any writing that isn't my homework. I start thinking of how I really have to this or that urgent thing on my to-do list. I fear I don't have the self discipline for writing so it will never be as good for making money as job I HAVE to do no matter how I feel. I think to myself writing doesn't make any sense because I need money immediately and I should just go down the block and apply at the Dollar Store. I become certain few people would buy a book I wrote even if I am a good writer because good things don't happen to dark, depressed people, and so on and so forth.
The guilt, and self-loathing, and frustration about not being able to just suck it up and get it together, is probably the worst thing about all of this, about the whole disease, if I had to choose a thing. I'm always convinced that I am doing the wrong thing, no matter what I am doing. That might be because I am doing the wrong thing. I know very well when I'm not acting logically or in my best interest and yet can't stop it, or can I? I can't stop the fatigue or pain or fear or depressive thoughts, but I CAN ignore them. I have to do it all the time. I have a fear of left turns across traffic, for example, but I've made thousands of them (though it never gets easier and I will go out of my way to avoid them). The knowledge that I can do unpleasant things and just don't want to because it feels shitty makes me even harder on myself.
The big "No"
If I were to put it succinctly, what life feels like is that there a huge part of my psyche that simply says NO to everything, to life itself.
"Do you want to eat lunch now?" I say to it.
"Too bad," I say, "I'm eating lunch."
"Fine," it says, bitchily, indicating it is anything but. "Don't make it complicated".
I smack myself in the head a lot when I'm battling these inner demons as if I'm trying to wake myself up or jar some sense into myself. It's kinda a new thing. I get the urge, and I don't really see why I shouldn't do it. So I do it. My doctor says it literally excites the neurons and briefly makes the brain fire faster when you hit yourself in the head and so it is a reasonable impulse.
I have very low self-esteem. Very, very low. I've had social anxiety my whole life, and all these other symptoms from age 18, which is the time a person is supposed to begin to pursue a calling and learn how to take care of themselves, so I don't really have a strong sense of self or my own capability...what do they call that? Self-efficacy. Yeah I've got no self-efficacy. Not being able to heal myself is the greatest failure in that regard because I've tried so hard for so long. It's not like I've really tried very hard at anything else. Healing has been my obsession. If I'd ever been well long enough to build up a life-savings it would have been what I poured my life savings into, but instead it is what I've build up all my debt around, -249 k at this point. I mean I do have 2.5 degrees to show for it, but I don't consider them particularly useful or important. It's just been the easiest way for me to live.
Even though I think I am talented at some things like writing and plant related shit, and very smart, and independent, and good looking, and a "good person", I haven't proven to be capable of achieving much with this illness.
I also feel responsible for my illness. People will say, "Oh no you're not, that's ridiculous," but I think I picked this life and that there has to be a way out of this mess, and I obviously am not thinking the right thoughts, or eating the right foods, or making the right choices or whatever. If I were, it would have to reflect. If I am still sick then I am still doing something wrong. Essentially I do "deserve" to be sick. The fact that I am sick is irrefutable evidence of that because the Universe is a fair place. Unconsciously, I'm creating this. I've forgotten who I really am. I'm not following the rules.
Knowing this makes me angry and the wounded parts myself that refuse to let go of their grudge against life. Then I feel bad for thinking a thought like that because it just perpetuates the problem. Then I feel bad for feeling bad for feeling bad.
Time to sing my theme song (It's just the refrain I relate to. I don't think I'm fat, and any characters named Josh are purely coincidental):
-Emily, The Super Sensitive Human