Mine is mostly fatigue & brain fog. As we all know, the fatigue is debilitating. After 17 months of LC, I can go out some. The problem is that I can never make plans because I don’t know from day to day how I’m going to feel. If I’m out, I never know when the overwhelming exhaustion is going to hit. If I let that go for any length of time, it will take me days to recover. In the beginning of this, I had driven myself somewhere. The attack hit so fast. One minute I was fine, and the next, I was overcome. I was in a situation where I couldn’t lie down to stop it, so it got worse by the second. Exhaustion, dizziness, out of breath. I couldn’t drive myself home, and by the time someone gave me a ride, I was in such bad shape that I was non-functional for three days. I got stuck in less dramatic ways a couple more times. Now I stay in complete control. I mostly no longer drive so I don’t get stuck. I have friends that have pushed me to go to lunch, come to their homes instead of them coming to mine, etc. I only put myself in situations where I can be brought home right away if I start feeling bad so I can rest, and keep it from getting out of control. Those of us with LC have so little control over what’s happening to us. I need to feel like I have some control.

I can’t fly because I can’t sit up long enough to make it through an airport. I’ve missed an overseas trip, and two more trips - all to see family, including the 100th birthday celebration of a dear relative. I can’t visit my son.

I’m a pet communicator, but can no longer do that because of my brain fog.