In 1999, I went from having six week episodes of CFS symptoms that would then disappear, to having symptoms all day every day.
My world began to shrink.
The last time I went to the library that fall, I had my five children with me, ages 8 - 16. We headed down the stairs to the kids' section and I knew I was in trouble by the time I'd gone down the first few steps.
The neurological symptoms hit full force. The shaking started. My brain filled with fog, and I had trouble concentrating. The kids wandered from book to book, while I wandered from shelf to shelf. I was having trouble standing up, let alone walking.
I felt like I'd had a couple too many drinks. I was afraid I would bump into the walls. I was afraid someone might speak to me, and I would stand there gaping.
The rushing sensations, the inner tremor, began in earnest. I knew I had about five minutes to get us OUT of there.
This was not a panic attack. I was not afraid of the library. I WANTED to be there. I had always felt at home there. This was an all-systems crash about to crest.
I helped the kids grab up a book apiece, got them checked out, and stumbled for the door, my hand on the wall to support me as we headed back up the stairs and out to the van.
My heart sank as I realized that I might never be able to walk into that building again.
And I didn't, for seven years.
In 2006, I gave it another try. My husband Alan drove me to the library, prepared to lead me out if I began to crash. I didn't take out any books, I just wanted to see if I could walk in and out again. I didn't speak to anyone. All my energies were focused on staying upright, and navigating between the tables, the shelves, the people.
It took everything I had, but I was successful. I walked in under my own steam and walked out the same way five minutes later.
Alan drove me home and I went to bed, exhausted. Exhausted, but with a small victory under my belt.
I spent 15 years losing the battle against CFS. Two years ago, I found treatment that worked for me, and now I am making a comeback.