For background, if you haven't read it already, you should read the wonderful "Spoon Theory" that is out there on the internets, written by a woman with Lupus. I'll be referencing it a lot though this post.
This is my first-ever post using the Blogger app on my Android, so if it's glitchy please let me know. If I know people are reading this then maybe I might possibly be encouraged to use more spoons on posting here a bit more often. Or not. My spoon supply is very limited.
Christine, author of Spoon Theory, does a very good job of explaining the stamina issues that come with chronic pain. I. Really wish more healthy people who care about those of us who are disabled would read that post, and review it frequently if needed. Recently I have had community members I care about deeply making demands on spoons that I just do not have to give them. At the moment, I am in the middle of a semester from hell in my graduate program. I barely see my eldest child because he is in full time school during the day, getting out after 3pm, and I have to leave for class by 5:30 three nights a week, to be out past his bedtime. In that scant 2 hours, I need to recover from taking my other son to and from his half-day pre-k and picking them both up (my youngest stays with my caregiver while I stay out of the house between dropping off and picking up my 2nd son - dropoff is at 12:30 and then I am back in the line for pickup no later than 2:30 even though he doesn't get out until 2:55ish because otherwise I'm too far back in the line to have any hope of getting to my eldest near the time he's dismissed). I have been sleeping poorly due to the stress of school, kids' school issues, husband's school issues, community issues, and general health issues that hit me like clockwork this time of year (quite litterally, I generally feel like a two story tall clocktower may have fallen on me overnight most mornings starting around Autumn Equinox and letting up if I'm lucky sometime before Spring Equinox - this would be why I've been so drawn to the Persephone myth for so long, this has been my reality since some time in elementary school).
I keep trying to explain to people that I need to reserve my stamina, my spoons, for my studies and my children. I haven't been able to work on my novel much for over a month because of other life stuff interfering and taking the little time I have for THAT beloved activity away from me, which means I'm not recharging very well either.
To help people understand, here are a list of things that take one "spoon" worth of energy from me:
§ Going up a flight of stairs OR down two flights of stairs (in other words, I can go downstairs, realized I forgot something, go back up to get it, then back down and I'll have used two spoons)
§ brushing my hair (it's a holding my arms over my head thing - braiding it takes about half a spoon, putting it in a bun maybe a third of a spoon)... This is why I keep my hair long. If I keep it braided, I don't have to brush it as much as I do when it's short. The texture of my hair is such that it tangles very easily when it's loose (which means if you see me wearing my hair down, it's a sign that I think the event is worthy of several spoons above and beyond actually attending).
§ walking approximately 100ft.
§ getting in and out of a vehicle, especially without down-time between (long drives with cruise control on are much less demanding on me than running several errands in a row).
§ sitting in an unpadded chair for an hour (i.e. in class, at a restaurant, pew, my own dinner table...).
§ because I am also dyslexic - reading certain types of text, especially "footed" fonts and certain text sizes, or with columns or tables or other visual tracking distractions - costs about a spoon per hour. The same is not true of reading when I can adjust the font and keep the visual distractions around the text to a miniumum, which is why I am so fond of ebooks on my portable devices - that is a way to recharge and recover spoon for me.
§ washing my hair. I'm not able to do this independantly at this time because my knees, pelvis, and shoulders are all too unstable. I need to sit on a shower chair, which I can't always get into the tub on my own (that will cost me a spoon alone). If I have to stand in the shower, it will be more like 5 spoons and I will likely need several hours to recover to be able to do anything that requires me to be more upright than sitting in a recliner (in otherwords - this turns into Facebook or recharge reading time, or very grumpy Ahmie from being annoyed that she's not getting ANYTHING accomplished time). It also is dependant on temperature control - if one of my kids opens the bathroom door and hits me with a gust of cold air mid-shower, that will cost an extra unexpected spoon (I can't lock the bathroom door because it is very old, just a slide lock, which would prevent someone from being able to come in and help me if I needed assistance getting out or if I were to fall). Not being able to shower at will without having to put a lot of thought into it is something I do kinda resent about my disability.
§ washing a sink full of dishes (though I actually generally enjoy washing dishes, the standing and arm movements are painful).
§ vacuuming, if the floor is already clear of toys and such
§ Standing still on a hard surface, or in shoes, for more than a few minutes (this one generally hits me later and is why I use my scooter at church so much - by the time I realize how long I've been standing while engaged in a good conversation, I've spent almost all my spoons for the day and need a nap).
§ since my right knee went out in June, driving where I need to switch from accelorator to brake pedal frequently such as downtown driving or rush hour costs me about a spoon every 10minutes.
§ cuddling with my kids in a way that keeps me from changing positions for more than about 10min. I always try to keep several spoons reserved for them anyway, or invite them to snuggle me while I'm laying in bed (which recharges spoons instead of costing them, but my day doesn't generally allow me to have enough downtime to fill their snuggle needs that way exclusively, especially with being out past their bedtimes three nights per week)
There are a lot of other little unexpected things that quickly deplete my resources in ways that surprise others (even my husband of 12 years). Personally, I prefer to focus on ways that I gain spoons instead. A few of those are:
§ crocheting... For some reason the movements involved are something I can sustain for extended periods of time, and it's so good for my mental health to have a physical SOMETHING that comes out of it.
§ writing via computer (handwriting is something I avoid as much as possible, it is not worth the spoons with as illegible as my handwriting is). This is anything from participating in an online community via Facebook or email lists, to writing fiction or even non-fiction (but only if the non-fiction doesn't involve having to move around a lot to search out references in physically printed materials - the movements of that drain me quickly). Feeling like I understand others, and that I am understood, is invigorating to me.
§ getting a chance to practice compassion for others instead of always being on the receiving end. This is what I love about my church community so much - I feel called to practice unconditional compassion there... I do wish sometimes that certain members wouldn't make it such a challenge to follow the line of compassion without being taken advantage of and potentially abused...
§ receiving feedback that something I've done has made a positive difference in someone else's life - this of course is made more likely by the above behaviors, but sometimes it comes entirely out of the blue and that random feeling of being valued is so good at recharging me that I try to make sure I give others honest positive feedback as often as I can. I don't do empty compliments, but if I can give a kind, personal word and brighten someone's day just a little I know how big an impact that has on me personally so I try to do it for others when I'm not too wrapped up in how many spoons I still have compared to how many I would need to get through the rest of what I want to accomplish that day.
§ sleep, of course... Though the restlessness of sleep with chronic pain makes that one a little hit-or-miss... Sometimes a nap will help me recover a few spoons and make it through the rest of the day before bed, sometimes I'm down for the count. I can't generally predict which it will be when I lay down. And some mornings it takes me close to an hour to really have my body cooperating with the whole getting-out-of-bed-without-falling-on-the-floor concept.
§ caffeine... But this one is dangerous. I love coffee but I can only have caffeine certain times of the day, or I will have even more problems sleeping at night. On average, it takes about 7 hours for a cup of coffee to wear off enough for me to sleep. Coffee feeds my muse, if I drink it too close to when I need to be asleep, I will feel a near compulsive urge to write as my brain starts getting close to dreaming. I've tried writing in bed to solve that, but that does bad things to my back.
§ problem-solving, but only if the problem is REALLY resolved. Tengram puzzles, troubleshooting a problem (personal, technological, physical, etc - doesn't matter) through to resolution, that kind of stuff leaves me feeling energized. Feeling like stuff is still at loose ends after repeated efforts to solve the problem would be exactly the opposite though, so I am wary of using this one.
§ watching my children play... Unfortunately it doesn't recharge me as fast as some physical environments deplete me, so it's a careful balance too...
I hope this gives some insight into what my life is like... And maybe a little inkling into what life is like for others who have stamina-limiting disabilities (yes, my friends with mental health issues, I mean you too!). If you care to share your own drains and recharges, or ones that you've noted about me that I haven't listed here even, please do. A more full understanding of the world around us is what I'm aiming for here, after all. It recharges me. :)
