Monday, September 24, 2007

Three years ago today

Three years ago today we flew home from England and Wales naive to the fact that we were bringing home with us, not only the wonderful memories of a glorious trip, but something that would change our lives, even more than those experiences, forever.

Some sort of amoeba or parasite, it is believed, "flattened" Erin by Christmas, Brady by the end of January, and me just a couple of weeks after that. Since then our days have been filled with extreme fatigue and many forms of pain - which began when we arrived back home but didn't put us down entirely until a few months later.

Each day for us is a fight to live. What does this look like?

  • Treatments and doctor visits of various kinds. I just counted 40 days of these since the beginning of the year which began 39 weeks ago. You get the picture?
  • Food preparation. We are sensitive to many different kinds of foods, so that means we prepare all of our own food, even our bread and crackers now.
  • Resting. We have to rest because we get more sick without it. We rest with light books, video games, movies, participation in Internet forums or blogs of our interests, Brady's hobby of 3-D art and Erin's of book reviewing middle grade/young adult fiction, naps (rare for us girls.)
  • Coping. Sometimes we're too sick to rest; so we pray, talk, cry, and try to nurse each other through it.
  • Studying. I am constantly needing to look up various supplements, symptoms, foods, or asking my health care people about them. I try to study various protocols and seek out the help we need for various issues. (I say "try" because my brain fog is great.) The kids are trying yet again to start some studies this fall, but it is very difficult. Erin's mind is the clearest and she still can barely stay caught up with a just couple of subjects because of the fatigue.
  • Getting out into the world. This isn't easy and if you see us out there, you need to know that it took a lot of effort on our whole family's part to get us there. Church, choir, weddings, picnics, plays, classes. We've had some success with participation in these, especially Erin as of late, but we're not consistent by any means. We always pay a big price in recovery time afterwards.
  • Celebrating. Practically impossible without outside help.

Did you notice laundry, housecleaning, etc., are not on the list? My dh does most of this right now. Yep, he's working almost full-time at home, along with his professional job. Also, you'll notice exercising isn't on the list. Erin is able to take a 1/2 hr a week dance class this fall, but the exercise we exert just to do the normal things like showering, dishes, grocery shopping, getting to our treatments, that's about all we can handle right now.


Traci said...

Three years ago, wow. Mrs. M, when I come and stay with you'all over fall break, I will totally help you with dishes and meals and everything and anything you want me to do! :D

Sherry said...

Sounds great!