Wednesday, September 28, 2011

Broken Promises

So I promised that this wouldn't become a celiac blog... but it turns out that eliminating (ha ha, no pun intended) my disease leaves me with, well, not a lot to talk about.

So here's the scoop: I'm out on disability. I am extremely lucky to work at a place that offers short and long term disability coverage, so I still receive a portion of my salary while I sit here at home and do my best to get well. If that wasn't the case, I am sure that I would be soldiering along at my job until I ended up in the hospital, racking up big bills that would lead directly to my existence on the other side of the social services table.

Instead I work at a kind, humane place that genuinely cares about the well-being of its employees, and I am incredibly grateful for that. Thanks to them, and to labor unions, and insurance. You all are the bomb diggity.

This is the third day of my disability leave, and it has become very clear to me why I've been struggling so much the last few months. Every day (so far) I have been able to get up to see the kids off to school, do some housework, take some light exercise (usually a walk downtown--a mile in each direction), take a nap, and prepare dinner. I've also caught up on some of that unpleasant adult-type paperwork that we all have to do--calling insurance companies, paying bills, etc etc. You know, the stuff that people have to do every day.

I was not able to do any of this while I was working, even when I reduced my hours to 20 per week. I would work for four hours and collapse into bed for a nap equal to that time, only to rouse myself for a doctor's appointment or to prepare a half-assed meal for the kids (or left them to fend for themselves with the frozen/instant equivalent of a meal). A good portion of my farmshare went bad because I didn't have the energy to prepare fresh food; this led to its own problem, as my weight continued to plummet (118 lbs at current writing). The housework fell to the side and the apartment collected several cats' worth of dust-kitties...and let's not even speak of the bathroom or the inside of the microwave. Twice my long-distance partner came to do a deep-clean of the apartment, which was awesome, and lasted for about a week.  Collection agencies started to call because I hadn't sent out the insurance information for medical procedures performed months ago. My teen (and the teen that is staying with us briefly) were acting out, a result, I'm sure, of the lack of attention I was giving them. I was depressed, feeling like I couldn't manage my life and that it was quickly spiraling out of control.

Not working has made this condundrum so much clearer. Here is a metaphor that I got from somewhere (post in the comments if I stole it from you, please, because it's a good one and it deserves attribution):

Imagine that everyone is given a certain amount of energy chips to get through the day. Every thing you have to do uses one of those chips: prepare a meal, spend a chip. Go to an appointment, spend a chip. An hour at work, a chip. Because my body is so malnourished and debilitated, I have fewer chips than the average person, and so I used them up faster. When I pushed myself to do more, I was borrowing chips from the next day (when I worked three 6 hour days in a row, for example, I had to spend the fourth day entirely in bed).

Now that I am not using up all my chips at work, I am able to not only accomplish things that I have to do in order to live, I have some chips left over to do some things that include healing myself so that I can get back to full energy--like some gentle yoga, learning to cook gluten and dairy free, and healing some of my relationships, and myself.

I am also learning to pace myself, as the most challenging part of this illness is the tsunami of exhaustion that would roll over me seemingly without warning--when my energy chips were gone. I'm learning the limits of what I can do, and to notice when there are tsunami warning signs.

I'm hopeful that a couple of months will be enough to restore me to good health. If it's not, I"ll ask for a couple more. I need to gain about 20 lbs and restore my low vitamin levels. I need to be able to have enough recipes under my belt (haha) to cook healthy gluten free meals every day without having to think too hard about it. I need to learn how to pace my workday, my appointments, my obligations, so that I don't drown.

I also need to find a way to incorporate art into my everyday life, because this gives me energy. Writing here is part of that, and so is cooking. I've been exploring some visual art as well, which is something that I haven't done in some time, but that I enjoyed very much.

I'll keep you posted, literally, on how this is going.  If you're not so into hearing about my process, I don't mind. Check out for a while and check back in at the end of November and see how things are going.  I'll be right here.


Sair said...

Thank you for always being so honest here (and in your personal life), thank you for raising awareness of the things that impact you and that are important to you, and thank you for being an all around amazing person.

Jen said...

Thanks, Sair. I appreciate your support a lot. :)