A Shift in Expectation of Self

I really like this post on body policing, and in particular, how people seem to feel qualified to tell someone with a chronic illness that if they just did X – largely either adopt some quack routine or exercise – that all their problems would go away. In particular, I really liked this:

You’d never run a marathon with pneumonia, but a man with CFS needs to, because expending all that additional energy will make his problems go away?

You hear someone say that their life is awful. You hear them say that they’re in pain. You hear them talk about the medications, the doctor’s appointments, the flare-ups, the feeling of never being able to escape. You hear these things and you say “laziness”, but it never occurs to you that your own illnesses- a cold, the flu- make everyday tasks difficult- difficult enough that, quite often, you will complain about being sick and sometimes even skip out on obligations so you can rest up.

You hate being sick.

Admittedly, this was already on my mind, as this morning the fiancéOh yeah – hey, I got engaged! I guess that didn’t make it on to the blog, although it hit Twitter and I assume most of you read this from there. and I were talking about some general goals and ideas of accountability, and he asked me to talk a bit more about how exercise can be a challenge with my chronic pain.Sappiness alert! One of the many reasons I love him: he has taken the time to ask and learn about limitations and range and how life can be impacted by living with a chronic illness, and I’ve never once felt like this was anything other than an effort to get more knowledge so that he can do his best to support and encourage me. For the first time, I really had to think about the activity level that I held myself to as “the standard:” I was at one point doing yoga and pilates twice a week each; going to the gym three times a week; hiking and walking all over the University of Washington campus; and going dancing several times a week.

I’ve failed to meet anything even nearing that level of activity since I left Seattle, though, and it’s been discouraging for a number of reasons. Exercising hurts, aggravating my chronic pain. I know I need to do this, but I don’t like being in pain, so it’s a disincentive. The fiancé listened to me complain a bit, and then asked a question that led to a lot of coins dropping all at once: he asked if, after a period of time, I’d “break through” and reach a point where exercising didn’t hurt, like most folks do when they’re just getting in to shape.

And I realized that I? Do not know. Today is really the first time I put together the other half of that equation: I was able to be that active while at UW because I was on a cocktail of medication that managed and controlled my pain. While dosing and makeup varied and was continually being adjusted, during most of this period of time, I was taking: 120mg XL morphine a day; 8-10 vicodin as needed for breakthrough pain; anti-nausea medication; two different anti-depressants to help boost the effectiveness of the painkillers; and a rotating schedule of sleeping pills. Not infrequently, this would all be topped off with an anti-anxiety medication (useful for tests and doctor appointments, which were almost always full of pain). So yes, no wonder it didn’t hurt to exercise – I had done a very good job at stripping away the pain.

It’s a bit weird and a bit of a relief to see that I’m actually not a failure or weak for not being able to live up to that standard of the past; I’ve managed to largely stop taking all medications for my pain (with exception of the occasional vicodin or high dose of Advil), but this also means I need to re-evaluate what I can and cannot do, and stop holding myself to a standard that I was only able to meet due to prescribed medications.

It is a strange shift in belief and concept of self, if nothing else.