I think that life, post NF, for me, will always need a deeper level of quiet/down time than it did before. I know it's sad, but I can't really listen to music at all anymore, except specifically in a gym, to *my* music in headphones, if I am working out (which I just started back to do a few days ago!!). It's partially the PTSD- ever since then, I have needed a quiet as possible environment. Now, since I've been mourning my parents for more than two years (they died a year and four months apart), the Jewish laws and rituals of mourning dictate no live music, or listening to music for enjoyment at all. I am OK with that. I have missed some nice concerts I wish I could have gone to, but in general, the quiet is good for me. At Azriel's BarMitzvah we had a DJ (no live music), and when I asked my rabbi about if I can dance at the BarMitzvah, the answer was no, but I could be there. So, I didn't dance (but I wanted to).
Our counselor, on a phone appointment with me the other day, asked how much quiet time I think I need... a few hours a week? A day? A week? I answered I felt like I needed a day per week. But I don't naturally take that time for myself. I usually have to have my body force me into it... which is what is happening today.
Yesterday was Yom Kippur, the holiest day of the year for us Jews. It was a thousand times different than last Yom Kippur, thank G-d! Last year I was in horrible abdominal pain, and didn't leave my bed all day. I did fast (25 hour fast is mandatory for Yom Kippur), but I probably shouldn't have-- I was *sooo* sick by the end of that day. This year, totally different! I was in synagogue almost the whole time, and my fast went pretty well, no big issues. I stood almost all day with the prayers, as is customary, and only near the end of the day did I start to get into some pain. I keep saying that the pain shots got me out of pain about 85%.... but that 15% actually isn't nothing. After a while on my feet, the abdominal pain ramps up.
Then, while already in pajamas ready for going to bed early last night, I got a call from my good friend who's daughter just gave birth a few weeks ago. Her daughter had been having some problems breast feeding, and I have been helping her out when I can. I've spent a few different sessions (2-3 hours each) with her working on the problems. So when her mother called me desperate to help her daughter last night, even though I was exhausted from the fast, I got re-dressed and went over to her. I wound up being with her until about 2am. There were many many issues to sort out... getting her a breast pump from a friend, and since that was on American power, I went to another friend to borrow a power converter, coming back to sterilize the pump parts and take care of the hurting new mommy with a budding breast infection and fever. Not simple. I definitely burned the candle at both ends, but when helping new moms is involved, I have a VERY hard time with boundaries. It's part of why I'm not working. I feel my horn playing, although it satisfies a different part of me totally, is possibly more doable, if I can put boundaries on how much I do on a given day/week. I tend to overdo things.... have you noticed that trait in me over the years?
So, today, I'm down for the count. Been in bed all day, although we have a dinner engagement with family soon which I am looking forward to.
Not only down for the count because I emotionally need it, but my body has been putting up red flags for a week now that I have been trying to ignore. My lymph nodes in my left armpit feel like a golf ball and are painful, I have a little infection on my skin graft (AGAIN!!), and I have to report here a month-or-maybe-more long pain that is getting me worried that something sinister is going on in my left leg again. I can't lie on my left side in bed- my upper thigh- femur actually- hurts. That's where there is all the nerve damage from the NF, but it's a new-ish pain, and not going away. I am slightly worried about an infection in the bone, like osteomyelitis, or something else I don't yet know about. I've lost some range of movement in that leg, too, recently. I decided to tell my doctor all these things today (spending the day in bed can make me come clear about what my body's messages are saying), and I'll start trying to figure out what is going on. Maybe it's just the nerve damage in that leg acting up.
I really want to ignore it all and be not worried. I have that "infection ghost" thing in me, and it's like having a shadow behind you which is 10 times your size and moving like a monster, and you're trying to ignore him all the time. I am so paranoid about blowing things out of proportion that I want to ignore my body's messages. I believe I am inherently healthy, and getting stronger since the pain shots (which, I may only have one more month of enjoying the effects.... we are working on finding an anesthesiologist who can do them here...). Anyway, I put the Manuka honey on the little skin graft infection today, and I'll re-apply it tomorrow (and so on), and hope it'll go away.
So, by hook or by crook, my body takes my quiet day. Ideally I'd be planning it into the week, but when I'm feeling good I don't necessarily need it. As I wrote that, I know it's BS. I always need it. I don't always get it, though. Sometimes migraines force me to take a day, but it's not a *good* day, it's forced by pain, and suffering in a dark room with nobody talking to me. I'm hoping that being 100% gluten free, dairy free and night-shade vegetable free will help the migraine situation. The jury is still out. I've had some doozies recently.
But this passed week I went to the gym for the first time in well over a year, I went grocery shopping, also first time in a year, cooked up a storm for dinners, and cleaned, did laundry, and was basically *in life*. That is a miracle. And I'm grateful.
(recently I re-posted my NF story on Facebook, I'll repost here, too. There are enough people at this point who don't know the whole background, this explains it well. It's from the NFW website, where there are many, many other people's NF stories, and an opportunity to donate to our foundation.
https://tim-hayden-7rt5.squarespace.com/klein-sarah-1/)
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