First, the mundane. There are only two places that I know of that carry the lactose-free yogurt I eat; one is the PCC about three meandering miles from me (the PCC’s of this century are a far cry from the ones I patronized 25 years ago when we were called “granola crunchers” and got our peanut butter out of huge vats) and Whole Foods (a new one just opened about two direct miles from me). Both places require you to either take out a second mortgage for fresh fruit and vegetables or turn over your first born for all other foods and sundries. I rent and have no children so I’m kind of stuck. I drool when looking at the sushi, bakery goods (yum) and fresh fish ….but the yogurt and a certain cookie that I love can only be had there. I don’t think I’ll be seeing either place very often. Good ol’ Fred Meyer is my cup of tea; and they have a very good natural foods section and lots of fresh fruit/veggies which is mostly what I eat.
Now the hard stuff: After Thursday’s challenging day with ye ol’ therapist, I’m feeling exhausted. I don’t know if I want to feel more (as I declared I wanted just yesterday) or in an effort to never feel anything again, fold up in the fetus position for whatever is left of my life, listening to the saddest music I can find. The music would probably make me feel something, though. Tough choices.
My friend Ted, the one who also has NF and is worse off than me and too far away to go visit (which he wouldn’t want anyway) told me yesterday he HATES when you set the clocks ahead because there is more daylight. He kind of laughed and said he knew it sounded weird. I didn’t think it sounded weird at all.. I get it completely. More daylight, more sunshine (well, limited here in the Pacific Northwest) more reminders of how limiting our lives are. How isolating. How lonely. How maddening and how difficult not to feel this way, write this way, be this way. I try letting the sunshine in, though, because when I’m not feeling sad about not being able to enjoy it, it does lift my spirits a little. Being warmer would be better and it is getting there, bit by bit.
It’s frightening for me to “let it in” most of the time. Not having someone beside me to support me through it is beyond difficult, but I made my choices in life and now I have to live with them. Like everyone else whose made choices that they must live with. That’s what’s so incredible about living with chronic pain (or any chronic illness, I guess); We think life feels so different than most people, yet it’s exactly the same in most ways (the ‘gnats’ in life; a bill that’s wrong, computers that crash, etc. And of course, other people have more gripping challenges such as the disappearance or death of a loved one, etc.
When I was younger, I had a couple of opportunities to settle with someone but they all fell apart for one reason or another. One man left because I told him I couldn’t have children. I had a tubal ligation at 25 when I learned the chance of passing this dreadful disorder along to my children is 50%, and, it would probably be worse for them. Don’t know if the thinking on that has changed, so don’t go by me; look it up. I, like so many with NF, am a “spontaneous gene change” and the choices I made were based on the information I had at the time I had it. Most “Truths” change, but many (like the healing power of kindness) stay the same. And there were others too. Most people have had a list they take with them to their graves. Mine is short, but it’s a list all the same.
So, on a go; my angels beside me, trying to ferret out another day in paradise!
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