do you know that feeling of completely running your tank dry? you have dealt with so much physical pain, you have nothing more to give, no more that you can do… but then, you have a time when it’s not quite as bad, maybe even good (i use the term ‘good’ loosely, for people with chronic pain and inflammatory diseases good is relative). personally i find myself in a state of self-preservation.
full definition of self-preservation::: 1. preservation of ones self from destruction or harm 2. a natural or instinctive to act as to preserve one’s own existence.
now i know there are several people who advocate for self-preservation, claiming it’s only ‘human’. but i have come to realize this is the problem. the Lord wants us to resist the need to live in our flesh and choose to rely on him fully. self-preservation is self-reliant and demonstrates little faith.
i personally want to be a person who takes my chances and lives this beautiful life God has so generously given me. i don’t want to sit on the sidelines, watching, i want to participate. but i have to be super intentional to make this choice. because my auto-response to those relatively ‘good’ days is to lay low and hoard my energy for the inevitable hard and more painful days ahead. but not only does this leave my relational bucket empty, mostly it shows i do not trust God to carry me through those hard days.
a couple weeks back i was gifted a set of Montana State Bobcat football tickets to the biggest rival game of the season (i am a proud alumni & a big fan of football). it happened to be one of those frigid november afternoons (even though the sun was out) we were ‘seated’ on the shaded side of the stadium, and like any good fans, we stood on concrete the entire game. for the typical person it would be uncomfortable. for someone with RA, well i would pay for it. and i did, by the time i made it home every joint in my body felt like it was clamped tightly in a vise. a friend of mine with fibromyalgia asked me how i did it & told me she just couldn’t, it would hurt too much. but this is the type of thing i call ‘worth-it’. and it was, i had a fabulous time with a sweet friend. i had a moment where i was a bit of a poor-sport and felt sorry for myself because the game didn’t end the way it was suppose to, but none the less i had fun. i spent the rest of the evening curled up in my heating blanket (best invention ever) and allowed my aching joints to rest & unthaw.
i love love to snowboard, it is my heaven on earth. it hurts- but i go anyways. i grew up on the ice and i enjoy sharing that with my family. it hurts- but i go anyways. i love love a good deal & love to do some serious shopping when i visit our family in MN. it hurts- but i go anyways. i love love traveling & experiencing new places. it hurts-but i go anyways. you get the picture, if it is going to fill my bucket, if it is a chance to live this beautiful life with my wonderful friends & family i do my best to go.
now i can’t just go-go-go do-do-do… i have learned to ‘pace’ myself. this is truly a learned art for me (actually i am still learning). so when i do one of my favorite, yet physically taxing activities i plan in a period of rest. this is humbling. i have had to explain to both my family & friends this is what i must do, in order to enjoy the activity & sustain.
for example, every year my in-laws take us on a family vacation (something i look forward to all year). in earlier years i tried my best to stuff the pain and push on, after-all that is true strength… yeah right, that is true pride & foolishness. we have since opened up the lines of communication on this topic (which is key). they really try to understand the best they can and respect & accommodate me. they wouldn’t need to, and not everyone would, but they do. and for that i am exceptionally thankful. we plan a day of activity with periods of rest, followed by a day of rest in the sun by the pool (by far my favorite thing to do, and no it does not hurt;). getting to this point has been a process, i had to first humble myself and not try to be the hero. second, I had to let them in, and i mean really tell them what makes me hurt. and then we had to agree to give each other permission; they gave me permission to opt out without shame or guilt and i gave them permission to go on without me. but the key is to keep communicating. trial & error will be your best friend, because what works this year, for this trip, may be different next time.
not only do i pace the major activities, i literally pace my month, week, down to each day. this takes a considerable amount of planning (which comes fairly natural to me and for that i am grateful for but I know that will not be the case for everyone). each day i rest. now this is more of a challenge with two kiddos and try as i might, their rest times rarely line up. but my oldest gets quite and understands my need for rest and i just make it a non-negotiable (later I’ll write a post about my daughter’s early understanding of the disease::: the blessings of empathy). i am still tempted to for-go this time (generally 20-30 minutes where I am laying down), but i have paid for it enough i rarely sacrifice it. in our society, in the mom world, this is hard to not feel guilty about, but i do it anyways (i will soon touch on this subject of not giving into the pressures of societal norms::: against the grain). i also plan out our week making sure we have 1-2 whole days at home in our comfy clothes. i also make sure i have one evening a week where i go ‘off the clock’ to watch my favorite show. this is where you really need to know yourself. i am a social introvert. i love going, doing, being social, but what i neeeeed to recharge is ‘me-time’ & my body requires the down-time. we have one night for bible study. we have one night for each other. we have one night for friends (because my extrovert hubby neeeeds people time). and then we try to leave the rest ‘open’. can i tell you as a recovering ‘busy-body’ this is the hardest part for me, but it has proven to be the most necessary part. this does not mean we do nothing those nights. i throw in girls night, or my hubby has a guy night. or we are open for a spontaneous get together. but we do try to leave at least two nights for ‘rest’. i keep a close eye on those days and protect that time, it is essential for my health. and each month i take a birds-eye overview of the month to insure we have adequate ‘blanks’ in our schedule. this skill requires diligence, team-work (the whole family signs off on the schedule during our family meetings), time-management, and the ability to prioritize & say no. which adds intentional balance, something i believe we can all benefit from, health issues or not.
one thing i have learned is no one can protect your time but you. no one understands your needs like you. make sure to be your own best advocate (something I touch a bit more on in this post). intentionally balance your time but do not sit on the side-lines of life preparing for the bad days. go on and live, its worth it.