As I was laying in bed this morning, ascertaining how much pain I might be in when I manage to get out of bed — creaking, cracking, popping and generally sounding like a Rice Krispies commercial of old — I pondered one of the typical dilemmas of someone living with chronic illness/disability and the resulting pervasive fatigue. HOW MUCH ENERGY AM I WILLING, AND ABLE, TO COMMIT TO PERSONAL HYGIENE? And, if I commit that energy to said endeavor, what will have to give in my desired to-do list (as in, the things I want to get done, such as cook a meal, make a phone call, fold some laundry — you know, the big tasks)?
Note to the reader: I’m currently typing this with my eyes closed because letting in the light is painful. I’ll have to do a really thorough spell check and grammar-fixing session in a bit, eh.
Squinting now, with one eye completely closed, I’ll admit that on this occasion, I decided to balance the competing needs of saving energy for the necessary things (feeding the fur-babies, making a meal, calling my mum, and getting out of my pjs) with the required energy for the unnecessary things (taking a shower, shaving my legs, putting on make-up, spending more than one minute doing my hair, etc.).
For some people, primarily women, the things on my unnecessary list are considered necessary. Living with chronic illness/disability and the resulting pervasive fatigue has made me reconsider what is truly necessary and what is superfluous social construct.
Let me break it down for you — my necessary versus my unnecessary — as I weigh the items in my head:
- feeding the fur-babies: they need to eat, they are my constant companions, they give me a reason to get out of bed in the morning, they comfort me when I’m having a bad day, they are my precious “children” because I’m not able to have my own and adopting human-kiddos would take more energy than my body allows, and therefore, they are a necessary part of my day and deserve as much energy as I can allot them — they come first;
- making a meal: my hubby and I need to eat because apparently it’s necessary for the human body to take in sustenance in the forms of food and water (a fact I find inconvenient and annoying), cooking & baking has become somewhat of an “adventure” for me as I learn new things each week thus feeding my need for activity, learning and personal growth, making food from scratch (when possible) is a healthier way of eating since packaged foods tend to be full of preservatives, and by making a meal I can control our nutritional intake a bit more responsibly when considering both of our medical issues and the fact that we have competing weight goals — I’m fluffy after numerous rounds of prednisone and becoming a reluctant couch potato and he’s almost dangerously thin after the burn pits he was stationed by while serving in the military, thus, making a meal is “necessary” even if this necessary item is often left out of the energy allotment for a given day;
- calling my mum or one of my best friends: we all need human interaction, support, encouragement, and to know we are loved, if I don’t make a phone call it is highly likely that I will only have a few moments in the evening of hearing about my husband’s day at work followed by me telling him that my pain was bad today, so I spent the day on the couch unable to talk, move, or eat anything that isn’t a pouch of ramen or leftover popcorn, and thus, making a phone call is necessary as most of my friends have moved away, and the few who live close by are either busy raising kids or they’ve turned out to be fair-weather friends, making life very lonely indeed; and,
- getting out of my pajamas: admittedly, this one often ends up on the “unnecessary” list, but I made an exception today since if I feel a little less bed-y (as in I look like a set of crumpled pjs laying on a heap of blankets) I may feel a bit better about being a reluctant couch potato, anyway, this “necessary” item is more about mental health than about actually needing to change out of clothes that consist of sweatpants and a t-shirt, into ones that have a few less holes but are still relatively comfortable — clothes with identifiable seams can be quite painful to wear and often bras are completely out of the question as they are a mild form of torture.
- taking a shower: I took a shower a couple of days ago and that shower wiped me out for the day so if I have anything else I want to accomplish today then this will need to wait, plus, since I didn’t do anything to make myself sweaty — other than pain induced sweating — I’m relatively clean other than the cracks and crevices that can be cleaned in a less energy-sapping endeavor, and by not taking a shower I’m being (wink wink) environmentally conscious in our drought stricken location, further, my fur-babies don’t mind if I smell a little more like them today, and if I don’t take a shower it doesn’t make me any less worthy of being loved, or change the fact that I am loved, and if I really think about it, taking a shower is a privilege that many parts of the world don’t even have the option of partaking in;
- shaving my legs: shaving my legs takes way too much energy to accomplish, razors are expensive if I want to get one that lessens the likelihood I’ll gouge the s$!t out of my legs, its one of those activities that seems never-ending as the hair grows back the moment I stop shaving that particular hair follicle, it takes up more of the environmentally precious commodity water, it’s warmer having hair on my legs in the winter as it traps the heat closer to my skin, I was born with hair like most other human beings, not all societies consider shaving a necessity, and if I’m supposed to shave my legs why aren’t all of us (i.e., women AND men) “supposed” to shave our legs, plus, shaving my legs (or not shaving them) doesn’t change whether I am worthy of being loved, or change the fact that I am loved, and thus, out of the necessity of saving my precious little energy, and because I can make many arguments against the practice, shaving my legs has landed on the list of the unnecessary;
- putting on make-up: this item follows quite closely the arguments against shaving my legs (expense, environmental consciousness, unnecessary social construct imposed on women, etc. etc. etc)., and whether I wear make-up or not does not change the fact that I am worthy of being loved, or change the fact that I am loved, and thus, wearing make-up is deemed unnecessary (unless, of course, I have the energy on a given day and I feel like the creativity of make-up will simply enhance my natural beauty);
spending more than one minute doing my hair: blow-drying, curling, straight-ironing, or styling my hair takes way too much energy and I can’t hold my arms in the necessary manner for the amount of time it takes to do those activities, plus, I look darned cute in my pony tail or pig tails (if I was Marge from the Real Housewives of New Jersey, they’d call me the Queen of Pig Tails, or whatever it is they call her, because she totally rocks the hair style and so do I), and, anyway, if I was a man, or my husband was cool with it, I’d shave my hair off saving time, money, water, and energy — proudly wearing my naked head and the scars from two brain surgeries, and for those reasons I find spending more than a minute to throw my hair up into some Marge-style pig-tails or a pony tail, an unnecessary use of my limited energy, thus, any unnecessary hair-styling is deemed a superfluous social construct as it doesn’t change whether I am worthy of being loved, or the fact that I am loved; and,
et cetera: the et cetera is everything else I used to think was necessary such as running errands (things I can now do via the internet), visiting friends (I’ve had to give up driving), going to work (sadly I’m not able to do that at the moment), keeping my house clean (I’ve had to let go of my need for a clean home, although I make certain it’s tidy 90 percent of the time), working out (I wish I was able to do this because it would help me shed the weight that I ballooned to — 180% of myself), going to grad school (it has been a lifelong dream to get my Master’s and then Doctorate in Biblical Studies, and then be able to teach, plus, I was great in seminary, rocking a 4.0 and loving everything I was learning), and all of the other things I loved to do in my so-called past life — the life I had before becoming a reluctant couch potato, because I AM WORTHY OF BEING LOVED AND AM LOVED whether I do any of those things or not.
All that to say, living with chronic illness/disability and the resulting pervasive fatigue forces a person to reevaluate what is truly important in their lives.
For me, it’s taking care of my little family (me, my hubby, and our two-fur babies), staying connected to my dearest friends and family, learning how to accept the fact that I am worthy of being loved and am in fact loved simply for being me, and doing the best I can to continue growing and improving myself all while being a pain-cringing-hot-mess from this cozy-blessing-of-a-couch-that-I’m-currently-residing-upon.
Do: When you face dilemmas in your everyday life, take a moment to consider if it’s something that is truly necessary or if it can be consigned to the unnecessary. If it can be put on the unnecessary list, then you’ve taken some of the stress out of the dilemma, and in effect, made your life a little more enjoyable.
Do: Be thankful for what you have and are able to do. And, if you find yourself unable to accomplish something with the given resources you have, then as they say in Frozen, “Let it go.”
Till next time,
Yes! Oh my goodness, I just recently wrote a post about this as well. Your article resonated deeply with me. It reminded me of something I read talking about “usable hours”. People with chronic illness have so few usable hours in the day to get things done, yet still have the same amount to do. I hope your day gets better ☺
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I like the concept of “usable hours”. That’s one I hadn’t heard yet. One frequently hears the use of “spoons” and choosing what we’ll use them for each day, but I prefer “usable hours” as then you don’t need to explain the concept of spoons — hours is a more universal concept, eh 😉 Life doesn’t slow down for the chronically ill/disabled, we simply slow down in the midst of our fast paced lives or we end up in the hospital because we’re doing more than our bodies can handle. One of the struggles, at least in my life, has been trying to defend my lack of job, not continuing my education, not being the consummate homemaker, not being as thin and active as I was, not being able to cook meals every day in spite of being home, not shaving my legs, not …. so many other things that OTHER PEOPLE say I need to do in order to be a worthwhile human being, worthy of love, or loved. The worst is when I feel the need to defend myself to the people who are supposed to be family or close friends. One of the most hurtful comments came last year when my hubby had just returned home from his latest deployment. He was incredibly thin! I, on the other hand, was even fluffier than normal because my hemiplegic migraines had worsened and I was able to do less and less as time passed. Someone who is part of my family said (not thinking before speaking), “It’s always the goal for the wife to weigh less than their husband.” I had to distance myself from that person and their significant other, because that’s simply part of their worldview and every time I’m near them I feel judged. I’ve never been enough for some people in my extended family — I’m not a “good enough” wife, not “successful enough” in a vocation, not worth bragging about, so on and so forth. It’s hard for me to be kind in my thoughts when considering certain people when they’ve judged me time and time again. If I could, I’d cut certain negative people out of my life altogether, but that’s not always an option. It’s not that I don’t continue to love these people, but I certainly don’t have to like them or let them take up much of my time or energy. I think we all probably struggle with that to some extent; whether it’s a family member, a friend, a neighbor, an employer, or just the general populace. In time, I hope people will come to understand that we’re doing our best, that we’re not being lazy, and that when we make them a priority we’re probably choosing them over doing something considered “self-care” for ourselves. (Sometimes, choosing to spend our usable hours, or spoons, on other people is “self-care” because human connection and meaningful relationships are part of being a whole and healthy person.) Anywhoooo….. since today is the day after a more noticeable hemiplegic episode, I’m extra fatigued and have less usable hours than on a good day. That said, I pray your day is full of usable hours, that you have lots of spoons, and that you find encouragement as your choose how you’re going to spend them. Now …. off to make something to eat because apparently that’s a necessary thing to do 😉 Stay encouraged!
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Thank you for your encouragement! I too, also like the term usable hours more as it reminds you that it’s not your fault. I think as well as reminding the other person. I’m sorry that today is not a good day for you with your hemiplegic migraines. Please rest and snuggle your doggies!