State of Grace

I am what you might call an independent person. I am not at all comfortable asking for or accepting help from others. In fact, I think it's fair to say that this is one of my defining characteristics. For the most part, I like this about myself, but as is so often true, what is a strength is also a weakness. I have a tendency to isolate myself, especially when I'm feeling weak. I'm pretty self-aware of this aspect of my personality, both its bright side and its dark side; but I have never before had the opportunity to confront it in quite the same way as I have over the past few weeks.

The most excruciating, and rewarding, and humbling aspect of this most recent flare is how dependent I was, and how much help I've needed, and gotten. I lost the ability to drive and to use my hands for any fine motor skills. Next time you have a day to kill, try spending it unable to drive, unable to walk any real distance safely by yourself, and unable to use your hands as anything other than clubs. You'll find, as I did, that life gets boring quickly.

By Wednesday, I was ready to admit to myself that my situation was untenable. By Friday, I was ready to ask for help. Not quite brave enough to ask anyone specifically, I put out a general call on Facebook. Within minutes, multiple people had contacted me to offer whatever help I needed. I got rides to the doctor, food brought to me, rides to karate, errands run, cat food bought and made, litter boxes changed, recycling taken out -- the list goes on (and is still growing).

Intellectually, I know friendship is not a quid pro quo arrangement, but my usual m.o. when someone does me a favor is to look for an opportunity to pay them back as soon as possible. This experience precludes that -- there are too many people, and their generosity is too abundant, for me to be able to even the score. It feels like a state of grace -- of being flooded with support and love to such an extent that there is no choice but to give oneself up to it, to revel in it and marvel at it and accept it. To do anything less would be to cheapen the experience. It's hard, in a way that's not easy to express. There really is an aspect of letting go and accepting and trusting that does not come easily to me. It's an incredibly valuable lesson to learn, and it's not one I could have learned any other way.

I am forever grateful to have such a strong and caring support system. I stand humbled before the awesomeness of my friends.

What Has Happened

I'll start at the beginning, which in this case was about mid-February. February 11 to be exact. That was the day I decided I really needed to take a week off from work. At the time I was tired and feeling burnt out. In retrospect, I now realize it was probably the beginning of this flare. My boss suggested I take the last week in February off. In the intervening week, I continued to feel tired, and around midweek, I noticed that my feet were going numb. This has happened before, in October, so I didn't think much of it at first, but as the week progressed, the numbness moved up until it was all the way to my shoulders. my hands have been especially affected,not only numb but also stiff. this has made typing almost impossible. I can hunt and peck but I can't touch type and even hunting and pecking takes forever. Right now I'm using assistive technology and dictating this post. it's not exactly without labor either.

Since I was taking the week off anyway I decided to try to rest as much as possible and see if the symptoms cleared up by themselves. By Wednesday night it was clear that I would need to actually see my doctor. I made an appointment on Thursday for Friday morning. The doctor held a tuning fork-like implement up to various parts of my body to see if I could feel it vibrate. I couldn't, until she reached my shoulders.she agreed I should have a steroid treatment. this involves being hooked up to an IV for about an hour at a time and having solu-medrol pumped into one's veins for three days in a row. I had my first treatment on Friday and the second two Monday and Tuesday of this week.

The numbness has receded somewhat though it hasn't gone completely away in any area of my body. I can feel my legs and my torso more, but sensation is still not at all normal. My hands are still almost entirely numb and stiff. I can't type and don't feel safe to drive. I can heat things if I'm careful, but I don't trust myself with a knife. This makes food preparation challenging. I can walk all right, but I have to mind my steps, and I'm pretty slow. I haven't fallen, but it wouldn't surprise me if I did.

All in all, this is the most disabled I've been. Lots of things are challenging right now. I'm making it through, though. I went back to work today, though I didn't get much done. one never does on the first day back though.

So that's what's going on physically. In subsequent posts I'll talk about training and karate and how that's gone, and also what it's been like to need so much help and how grateful I am for the support I have. I've always been incredibly independent, which makes this especially hard -- and thus, especially educational. For now the steroid energy is wearing off and working a whole day has worn me out, so that's all for now.

one more thing -- not being able to type means that I can express myself as well as I would normally would in writing. Even though I'm not affected cognitively (at least I don't think so), it slows my thinking down and makes me less articulate. Yet another way this disease is hitting me where it hurts.

Helplessness, Humility, & Growth

I've just finished my first course of steroid infusions, because I've just encountered my first flare that rendered me truly diasbled and mostly helpless. It's been excruciating, heart-warming, and profound. One of the effects I'm still suffering is stiffness in my hands that makes typing very laborious, so this is going to be short, but -- watch this space.