Tyson,

One thing I've discovered about this kind of disease is that it demands all sorts of new energy to manage the problems it brings--while at the same time taking away your energy. And one of those areas that demands new energy is the new dynamics in family relationships created by the disease: new balances and understandings to work out, all these new adjustments to make.

Human relationships are always sticky even at their best. Over the years, you work stuff out. Then comes something new, like a chronic illness, and you almost have to start from scratch. All the rules have suddenly changed. It's almost exactly like (I'm doing this too) taking in a family to live with you. All sorts of things that used to be automatic in your life have to be re-established. We have no idea how many unwritten rules we've developed for living together, until the rules have to suddenly be re(un)written!!

We myasthenics think a lot about muscle strength (and the lack thereof), but just as valuable, or even more so, is emotional energy. And having a chronic disease saps that, too.

I'm constantly trying to find a balance here between giving too much to the disease and not giving enough to it. I think you will know what I mean! You played soccer the other day. I took my kids to the zoo for the same reason, knowing I might be kicking myself later but feeling defiant towards my illness.

I'm not quite sure what my point is here. Maybe I'm just saying that recognizing how much this thing demands of our energy emotionally, not just physically, will help us to go easier both on ourselves and on the people we live with. We're all making it up as we go along, and it's to be expected that we get it wrong sometimes.

Anyway, I wish you strength in all areas.

Abby
who just took on a huge manuscript to be edited in two weeks, forgetting the sort of eye- and neck-strain that sitting at the computer causes....