I received a survey via e-mail from the Chronic Fatigue Immune Dysfunction Syndrome Assocation (www.cfids.org) this afternoon. Most of the questions were very standard like how long I've had it, my work status, etc. The last question threw me for a loop though. It asked, if you woke up tomorrow completely recovered what would be the first thing you'd do?
The list of things I'd want to do is so long but I realized the one thing I'd really like is to be able to pack the whole family into the car and go to an amusement park. Think about that. For most people a day at the amusement park can be tiring but doable. For me, it seems almost insurmountable. I'm usually good for an hour or two of an activity and then I have to rest. To go to a place where resting is not an option, where I will be on my feet most of the time and also having to keep an active eye on my kids is just not possible right now. The walking, the loud noises and the excitement of it all would send me into such a relapse for days afterward it wouldn't be worth it right now.
Thinking about this just brings home the limits having CFS places not only on my life but my family's. I hear other moms talking about driving to the Shore (90 minute drive from here) in the morning, spending the whole day there with their kids and then driving everyone home in time for bed. I can't even imagine that. My kids rarely even get to the playground. Most of their days are spent inside the house. They're not glued to the TV set the whole time but they're not exactly living la vida loca. I worry how this is going to affect them as they grow, especially when they become old enough to realize what other kids are doing with their parents.
Please allow me a little pity party... THIS IS SO UNFAIR!!! I wish they could figure out what exactly is wrong with me and fix it. This has gone on long enough and I want my life back.
