Sunday, August 12, 2007


Before I went away, I contacted a peer counselor from my DMS (disease management system, I think). Here's what I wrote her tonight. I think just getting out heped a bit. I really do need to think about how to do things in the future. That being in a stupor thing just sucked. I am deeply bummed by how paltry my human interactions were over the wedding weekend.

I made it without getting sick--big yeah! Unfortunately, the utterly exhausted thing was crushing during and after. I tried hard to rest a bit when I could, but I did want to spend time with people.

The wedding was held on an island, which was gorgeous. Unfortunately, we stayed in a hotel on the mainland. Taking the ferry over each day tended to be as much activity as I needed. But then there was clambering up and down stairs and over rocky ground. I just barely made it. I did soldier on, but it took a lot out of me.

My sister had offered to get me a wheel chair, but I declined. I will use a wheelchair in an airport or at a convention, where there is a lot of walking, but generally, I'd really rather not. A wheelchair makes me feel a bit of a prisoner, plus being treated like a child. I'm sure those are not unique feelings. In any case, I don't think it would have helped much in Maine.

I ended up being so tired I couldn't even speak, so the time I got to spend with my daughter, sisters, nieces, etc., was kind of wasted. I was just in a stupor. I'm pretty disappointed, and not sure what I could have done differently. I used up every shred of leave I had.

Oh well. Are there fatigue management classes or anything? I guess I need to learn to make it clearer to people about what are reasonable expectations. Plus I have to learn to cope with lower expectations from myself. I'm sorry to vent all over you, but it has helped just to let some of it out here. My boyfriend says we should just have family come to us, because travel is so hard on me, and we live in such a beautiful place.

I hope you have recuperated from your travels. I'm both proud and terrified about starting another work week tomorrow.

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