inventory

Well, what a week it's been. On Thursday and Friday, I finally hit the wall of myself. I spent about 48 hours in the emotional breakdown lane as I finally took stock of what I've lost.

Most of my arthritis friends have something on their blogs about life before arthritis. There are often references to the "old me." At the risk of having some smart ass point out that the old me is really the young me, I thought I'd share a little of what I used to be able to do--because to grieve something well, you have to name it and acknowledge what it meant to you.

The old me could kayak all day--the Upper Coeur d'Alene was my favorite . . .

The new me hopes I'll be able to kayak flat water--a few hours would be great.

The old me could hike for hours at a stretch . . .

The new me can walk about 20 minutes--slowly--before the pain gets bad enough to make me stop.

The old me could sleep on the ground, then chase a toddler around a campground . . .

The new me can't sleep without Vicodin, Neurontin and sometimes Benadryl--four to six hours at a time when I'm lucky.

The old me could cut down a Christmas tree in snowy woods . . .

The new me ran out of energy to decorate my tree-lot tree this year. It stood there naked for three weeks, then my husband took it down.

The old me and my husband built this wall--four feet high and 100 feet long. Each of those blocks weighs 76 pounds. The old me could lift one by myself.

The new me has to tell the baggers at the grocery store that I have a "bad back," then carry the bags to the house one at a time. My husband carries the laundry up and down stairs and opens jars and bottles for me.

The old me could stay up until the wee hours of the morning to accomplish a task--in this case, a cake shaped like a police car. I could do whatever it took.

The new me has about 5 good hours a day before the fatigue sets in and the pain ramps up.

The old me could eat pasta without consequences. Then I could run off the calories--three miles a day.

The new me avoids gluten, dairy and soy which contribute to the overactivity of my immune system. The new me can't run.

The old me planted a garden.

The new me struggles to tend it.

The good news is: the 48 hours I spent venting was strangely freeing. It enabled me to do a thorough inventory, and once the losses were truly counted, I was able to tally those things about the old me that haven't been lost--the ways "me" continues to exist.

For a hard core do-er--that is, someone who defines herself by what she can do rather than who she is--this is more than a small victory. This illness, in stripping me of physical abilities, had completely upended my identity. Grief hid me from myself for a while--for grief is so very thick and dark--but I'm back now. At least, I'm back in the ways that really matter.

Thanks to my dear friend Goat who helped me come up with this list of "old me" characteristics that have less to do with what I could do and more with who I was (and still am).

The old me was/had:

spunky--check
chutzpa--yep, still there
irreverent--oh, yes
quick wit--well, people laugh at me regularly, does that count?
fearless--that's never been strictly true, but I fake it well
integrity--I hope so
never dropped the ball--well, sometimes I do now, but I'm finidng it can be a good thing
transparent--you're reading this blog, aren't you?
driven--yep
didn't like to fail--still don't, but I'm also learning to redefine failure
listens well--learning to listen to myself as well as others
not afraid to begin, harder time ending--still true, getting better at endings
kind--I think this part of me is back
ridiculously bad boundaries--yeah, this one might be worth losing

So what's left to count? All the ways the new me might be getting better, gentler, wiser. This is what I'm praying for--all that painful-to-learn stuff that you really shouldn't pray for unless you mean it. Patience. Compassion. Insight. Depth. No one wants to live with a chronic illness, but, hey, as long as we're here . . .

An Exercise in Optimism

This weekend I got in a bit of a snit. If I'm going to hurt all the time, I thought, I might as well get something accomplished. Basically, it was a tantrum. So I decided to finish putting in my vegetable plot. It's only 4 by 16 feet, but this season small is good. Last season I had pain and devastating fatigue, but no diagnosis. The garden went neglected. This year, I have pain and slightly less devastating fatigue. But I also have a diagnosis, some helpful tools, and Vicodin. What more does a gardener need?

I'm titling this post "An Exercise in Optimism" because with the disease I never know week to week, day to day, or sometimes hour to hour, exactly what my body will let me accomplish. The garden I plant today my languish untended tomorrow depending on what the disease does. Lately I'm thinking that optimism really should have a verb form. So often optimism is an action, not a feeling.

Currently my biggest challenge is the sacroiliac joint--where my hips attach to my spine. (This is why the rheumatologist is keeping the psoriatic arthritis diagnosis on the table. The S-I joint is a common site for this particular autoimmune arthritis.) So bending, squatting, and getting up and down can be a challenge. Luckily, the involvement in my hands and knees is still mild, so for now I can get by in the garden using my kneeler. It has handles I can use to lever myself up, and because the kneeling platform is a couple of inches off the ground I can use it even in heavily planted beds without crushing everything. Best of all, when you flip it over, it becomes a bench. Nice!

Isn't it great? And so Episcopalian.

And that nifty tool you see on it. The best weeding tool I've found so far. Weed fork and trowel combined. A serrated edge for sawing through little roots or cutting off baby weeds below the surface. A nice thick grip that's easy on the finger joints, and that little curvy part that keeps it from slipping when you push it into the soil.

Of course, these accommodations don't change the fact that everything is different. Methotrexate makes you sun-sensitive, so sunscreen is now a must, not an option. I've never been able to do anything--gardening, painting, cooking--without ending up covered in whatever medium I'm using. So now I'm not just dirty after gardening--I'm greasy and dirty. But the biggest change is my sense of productivity.

Just about everything takes longer when you have arthritis, and gardening is no exception. Add to that a dramatic decrease in stamina and the limitations imposed by pain, and projects that used to take a few hours can take days or more. By working slowly and carefully, I planted my beans, set out my tomatoes, and replanted the spots where the early crops failed to sprout. But I still struggle with intense frustration over how little I accomplish. Then the grief reprises. Then the guilt--because I took the "old me" for granted, and because I'm such a whiner when other people are worse off than I.

The only antidote to this mental masochism seems to intentional gratitude--a truly challenging discipline for a Type-A like me who still doesn't want to admit that everything has changed. It's a bit easier to be grateful when I read my blog-land friends who have more advanced or more intense forms of arthritis and have long ago had to entirely give up activities they love. Even so, it's mechanical, the way I give thanks, but maybe God still honors that. Lately, I'm determined to give thanks especially for the moments that can drive me to tears--the moments spent lying in bed and slowly moving each part of my body so that I can get up, or the moments awake in the wee hours (in the spare room so I don't wake hubby) waiting for the clock to tell me it's OK to take another Vicodin. It's my hope that this "unconditional gratitude" will begin to work in me what St. Benedict called "conversion of life"--the transformation of my deepest self into more of God's vision for me.

So did I pay for my exercise in optimism? Well, yes, I did. The woman who used to work 8 hours a day in the garden has gone off somewhere, replaced by a woman who struggles with stairs after a two-hour stint among the tomatoes and peas. On Monday, the physical therapy aide reminded me to "work to fatigue, not to pain." But this athletic young man also assured me it takes time to make the adjustment. The gentleness of his voice said, forgive yourself, be kind to yourself. With all the advice being offered to me these days, I think that's the advice I need to take.

Staying Sane - from Lene Anderson @ Health Central

Waking up in pain. Going to bed in pain. Never knowing if tomorrow's going to be the day it comes back with such force that your life is shattered, sidelined again while you put everything on hold, while you find a treatment that works. Hoping you'll find a treatment that works, having waking nightmares in which you don't. No longer remembering the time Before, back when your body was your own. Fighting, always fighting, to live, to get better, to not lose function, to find hope, somehow. Living with rheumatoid arthritis is living with a relentless assault, not just on your body, but on your mind, as well. . . .

Read the entire post here.

Read more of Lene's writing @ The Seated View.

(Thanks, Lene. I needed this.)