for the last few months i have been struggling with something related to my health. one of my doctors told me, in essence, that i would have to seriously cut back on my level of activity if i wanted to have a chance of getting any better. he explained why a lot of what i was doing was exacerbating my symptoms, and how resting even when i felt like i didn’t need to might help me in the long run.

this was problematic for me on a number of levels, and that’s part of why it has taken me so long to process the information.

first of all, i just have a lot to do. it’s not like i am the CEO of a fortune 500 company or anything, and it’s not like lives hang in the balance if i don’t prepare gourmet meals every night, but just keeping my house up and running at a basic level of sanity requires a fair amount of effort. i don’t have babies or toddlers, and my kids and *h are tremendously helpful, but the essential coordination of it all is still up to me- at least if i want things to run smoothly. i tend toward the OCD end of the spectrum, so although i have relaxed my standards a TON over the years of being sick, i still struggle inwardly with many many aspects of how i think my house should be, and how i wish my house could be, and these can be real emotional killers when you have a chronic illness. when i feel cruddy, i know things will have to fall apart a bit, but when i am feeling somewhat better, i expect myself to be able to pull things together. i also expect to put systems in place so that the next time things fall apart, it won’t be so hard on everyone. this means that to the best of my ability, things will be clean and organized and stocked and set up. even when i can’t actually do things, i like to manage things, and this is none too pleasant for the workers being managed at any given time. enough said.

the second problem, and this is the more embarrassing problem to admit, but the more real problem to deal with, is the problem of my ego. when i first got sick (over a decade ago- wow!) i was very type-A, achievement oriented, “if you work hard you can do it” blah blah blah,- that sort of person. but when i became bedridden, i was still that type of person. surprise! my personality didn’t change, only my frustration level did. because suddenly i was a person with a lot of drive and ambition who was stuck in bed and had about a million physical and cognitive challenges that weren’t there before. my whole vision of myself as a capable person took a super-giant hit and i had to literally reinvent myself multiple times until i was able to put together a person with a shred of self-esteem. and now that i am finally in a place of general equilibrium on that front (sometimes, but not always… believe me, i still have very dark times where i feel kind of like a slug and i feel pretty worthless in this new incarnation…), now i have to recreate again: but here’s the rub: it’s already a big hit to my sense of self-worth that i spend lots of time in bed. i already feel like a quitter because i can’t just fight my way through my pain and accomplish things in spite of it. i feel like a non-hero because i can’t overcome sickness and be kind and giving and awesome and instead i lay in bed wishing i could be doped up on ultra-powerful medicines so i wouldn’t have to be consciously aware of the life i am living. but what gets me through is that between those times are times when i am up and around and can actually contribute to the world a bit. i can bake for a friend or fill my freezer or write an email to cheer someone up. i can buy something my kids need or do an errand for *h or clean out the chicken coop and i feel like a giver instead of a taker. and i feel like it’s a small step in restoring the cosmic balance.

so for my doctor to tell me that even when i am feeling okay-ish, i should still take it easy and not do most of those things is a hard pill to swallow. it means that i have to take the bit of productivity that i have and sacrifice it for “the bigger picture”. because maybe in the long run it will help me to feel better.

or maybe it won’t.

and we don’t really know unless we try.

what we do think we know is that i am causing myself problems by dong too much. i am aggravating existing issues in my neck and other places, and it certainly isn’t doing me any favors. and when you start from a place of pretty poor health and then put other problems on top of that, your body is in a bad position to heal. it isn’t rocket science.

but my weak ego is resistant to taking another hit. although i know intellectually that taking a step back could be good for me, there’s just something about taking yet another plunge into deeper disability that i find frightening and upsetting. i’ve been back there before and i made my way out, so i’m not sure what the big deal is, but the fact that it’s taken me this long to even discuss it tells me that it is a big deal.

i’ve been slammed with migraines more days than not. my neck hurts so bad that there have been days i contemplated trying to hit the vertebrae with a hammer to see if that would make them feel any better. i started just wearing dark glasses every day, hoping that i can at least keep my headaches from escalating into full-blown hair-tearing/whining-into-the-pillow attacks (no luck so far). when a doctor asks me to rate my pain on a scale from 1-10, i honestly pretend that 10 would be getting tortured by an enemy during war, and that is the only way i keep from rating my pain as a solid 10 most of the time.

i try to know that everything in life holds a lesson for us to learn, but it’s hard for me to think straight about deep philosophical things like that and i think i have totally missed that point(s) of being sick and in chronic pain.

i think that my doctor (and my physical therapist, who said the same thing, without even knowing that my doctor had said it…) made some valid points, and i probably should cut back. i probably should do less. but i feel like i already have such a minimal life that i wonder, not in a rhetorical way, how small i should make my life in order to heal, before i make my life completely insignificant.

and if that sounds overly dramatic, i assure you that it isn’t at all.