The good news is that I don't feel as bad as I did on Weds. I think that the acupuncture experience kind of shook me up. I won't be going back. I've had this feeling over the past few months that it just isn't working. I also think that this acupuncturist has a real shadow side of being a major bullshitter. The whole experience of him taking a picture of my tongue is just bizarre and disturbing, even more so that I didn't get an explanation for why it happened. In thinking about it I believe that his ego was hurt because I sought out another doctor because it was clear that the acupuncture treatment wasn't working. I'm disappointed to let it go simply for the fact that it gave me hope and hope is critical with chronic illness.
I am herxing though. The antibiotics are causing some sort of die off reaction. This morning I woke up with a stiff, sore neck, painful swollen glands, headaches, sore muscles, burning eyes. The swollen glands and neck stiffness and achiness were probably as bad as they've ever been. I got a little alarmed at one point but then had to realize that I was also feeling some weird anxiety. I've been putting a neck warmer in the microwave and putting it on my neck and swollen lymph nodes. It helps.
I've realized how lousy it feels on an emotional level to be identified as a patient or someone who is ill. I can't describe it. It's easy to get lost in this illness. I'm trying to find a balance between researching and learning so I can be proactive vs obsessively looking for information and losing myself as a result.
Even though I wasn't feeling good physically, I at least had some perspective. That left me when the 30 page SSDI packet arrived. I'd already spent a good 5 hours filling out the SSDI application online. It's a bit grueling for a lot of reasons-the main one for me is that I hate what it symbolizes; that I won't be returning to work anytime soon, if at all. At first I thought a couple months off and I'll be fine. When that passed I thought okay six months and then I'll be better. Now that it's six months I don't know anymore. Anyway, I looked at the 30 pages worth of forms to fill out and felt overwhelmed and depressed. Not just for the volume of work but it means going over again why I can't work and writing down all my symptoms. It means having to be reminded of the life I once had and writing down why I can't do things. I can't describe it very well. There is a question that says what did you used to be able to do that you can no longer do because of your illness? By the time I got finished answering I was crying.
Somehow I have to free myself from feeling identified with this illness. I think because I'm still new in it, it's hard to have perspective. I'm still learning. I'm also still struggling with accepting the limitations it has imposed.
I was looking through a book I read in school and came across what used to be one of my favorite quotes:
We barely recognize the annunciation when it comes,
declaring: Here is the life you have tried to throw away.
Here is your second chance. Here is the destiny you have
tried to shake off by inventing a hundred false roles, a hundred
false identities for yourself. It will look at first like disaster,
but is really good fortune in disguise, since fate too knows how
to follow your evasions through a hundred forms of its own.
Now you will become at last the one you intended to be. (p. 94)
--An Imaginary Life by David Malouf (1996)
Now I have to figure out what it means for me in light of this. This is a great little book, by the way, about the main character's relation to the child, the wild uncivilized child, nourished in a place of exile in which he-the main character-is then increasingly enable to take on his true destiny. I think its time for me to read it again.
I have a credit card with Dell that would allow me to purchase a new computer if I wanted. I got really sad when I thought I'd better use it now because if I'm on ssdi I might never qualify for a credit card again. I think I might go ahead and get the computer. You never know it might be the last time I'd get to buy one with credit.