Nocturnalism is only a problem if everyone else in the world is not nocturnal.
I meant to write this blog yesterday afternoon. I knew what I wanted to write - not at that exact moment- but I knew it was there in my head somewhere. I'd thought about it before, and I just needed to concentrate and find it and get it all out. I tried to sit up at the computer, but after two minutes or so I was lying on the couch and all I could think about was how warm the sun was. I tried again to write this morning but that didn't happen. Then I was really going to write this evening but I couldn't, I couldn't do anything. Now that it's 1 am and my head is clear and I'm able to write I can blame my failed attempts on one of two things: brain fog, or nocturnalism.
I think there was a time I thought nocturnalism was my whole problem. I thought it was just my unfortunate natural rhythm, and how would everyone else feel if they were supposed to sleep all day and work all night? Probably the way I did.
In college after I'd gotten enough studying done, I'd still stay up all night looking up things that interested me in LexisNexis, and one thing that interested me was nocturnalism, which sadly is not a really a word but should be. I remember reading an article by a woman who had been trying to write a book, and one day she realized the only way she'd ever get it done was to give into her natural tendency to be nocturnal. Once she "gave in", She went from barely writing a paragraph a day to writing pages and pages through the night. She woke up in time for dinner with her family, started writing when they went to bed, had breakfast with them, and went to bed again after they left for school. I wondered if that was the only way I would ever get anything done in my life. My noctural friend and I fantasized about a college where we could take classes from 5pm-5am.
Lately I've been laying the blame for my "day-night reversal" totally on the CFS. It's a typical symptom, it's a sign of impending adrenal collapse, etc. But the other day when I was repeating to my dad what my acupuncturist had promised me, about "naturally feeling more alert during the day and more like sleeping at night as I got better", when I was complaining about my nocturnal tendencies, Dad laughed and reminded me that the tendency never went away for him. We're both congenital night owls. Laying awake in bed has been a part of my life for as long as I can remember. I used to make up lots of games to try and fall asleep. I counted slowly in my head up to the thousands. I read hiding under the blankets with a flashlight. I thought of this today when a friend told me she was thinking of trying melatonin. (I've tried it, didn't do anything.) She said that two different families she babysat for gave it to their little boys. Kids today! Why can't they hide and read like we did back in my day, instead of bothering their parents with their awakeness so much that they are forced to drug them? ("Awakeness" also needs to be made a word.)
I definitely get the feeling I should be ashamed for my nocturnalism, that it's abnormal and immoral and unproductive. I feel guilty staying up to write this, despite the fact I couldn't sleep anyway no matter how hard I "tried". And what about "morning people"? Life was always so much kinder to them, particularly in middle school when the bus came at six am. I remember telling my friends how I kept getting to the bus stop later and later because it was getting harder and harder to wake up in the morning. One girl said, "Really? As soon as I open my eyes in the morning I want to get out of bed. I don't get it - wanting to stay in bed when you're not asleep anymore?" It was a critical moment for me, realizing that there were people like this out there, and that I hated them.
"Dr. Byron M. Hyde, a physician who studies CFS in Ottawa, Canada, has suggested that major sleep disturbance may be one of the very first symptoms of CFS to develop."*
That's my segue from the sleep problems part of this blog to the CFS part.
I've decided to put off the stem cell decision for awhile. I'm going to make an appointment to see Dr. Cheney again in October. Then it will have been one year of treatment with cell signaling factors (CSF's). My echo terrain map showed improvement in April, after six months, so maybe it will be close to normal in another six. And in the mean time maybe I will start feeling "functional improvement."
From Dr. Cheney's 2008 article:
There was a time when I thought that I might as well shoot myself up with placental stem cells, I'm already lathering up twice a day with CSF's from bison. But it's not the same thing. Dr. Cheney has really done a good job making the case for his confidence in the safety of the stem cell transfusions, but I'm still going to wait. My dad read the rest of Stem Cells for Dummies for me (I'll get to it soon) and he said "On a scale of +/-1-10 I went from + 5 in favor to -8 against using Stem Cells for CFS."
The main impression I got from talking to him is that it's still a highly experimental treatment and there's a lot that isn't known about stem cells. I'd already decided to put off my decision before he told me this though. I'm not ready. I need more information, and if there isn't any, I need to more time to mull over what I've got, though I'm well aware I shouldn't mull too long. My one year CSF anniversary seemed like a good deadline.
I think Dr. Cheney is going to make the human derived CSF's available soon. HPE- Human placental extract. They're from the same source as the stem cells you'd get in Panama, but it's not the cells themselves, just the signaling factors. Not sure what exactly that means, except that it probably won't work as well as stem cells, but I know at least one patient on the trial has made a huge improvment on the echo cardiogram, although without any "clinical improvement." But that might come in time.
In the words of CFSpatientadvocate:
In regards to this last item Dr. Cheney related his enthusiasm about a new gel that he has made from afterbirth material. Citing studies on hamsters, Cheney described a process where non-stem cell material is extracted from stem cells and injected back into the hamsters, curing them as if it were stem cells. Dr. Cheney has made a similar gel from human afterbirth that gets a very strong reaction on his Echo machine, much stronger than any existing CSF. He is very excited about this.
I do wonder if I am being too cautious, especially when I see other people I know a lot more willing and ready for stem cells than I am. But I just don't want to do it if I don't have to and I'm hoping, maybe naively that if I keep up with the CSF's, the human CSF's, acupuncture, herbs, rest, pilates (which is supposed to strengthen the immune system) the the right diet, and even the right attitude, I can get well without stem cells. I've also been a little more open minded about ARV's and I've been reading treatingxmrv.blogspot.com. At this point though I think I'd still try stem cells before ARV's, but who knows.
If there is a real chance to be healthy again, I will not let it pass me by.
Some long awaited test results:
Mold: On the ERMI scale of 1 to 4, 1 being safe 4 being dangerous. My apartment got a 1.9. I'm in the moderate zone. So I don't think I'll be moving...
Amoeba: I tested "equivocal" twice by saliva. Then I did two weeks on the really strong antibiotic Alinia, which I am still recovering from, GI-wise. Guess what? My test for parasites went from equivocal to positive! How did that happen? For now the doctor is saying maybe we tested too soon and I should do the test again. He's sending me a kit. If it's not negative this time I don't think I'm going to do the antibiotic again. My digestion has actually been pretty decent.
Thyroid: Still don't know if I have tertiary thyroid syndrome. My blood test (TSH, T3, T4) results were in the normal range but it's the urine test results I am waiting for.
Most annoying symptom lately: Burning sensation in the back of my throat that is making me want to constantly drink massive amounts of water.
*Neenyah Ostrom, America's Biggest Cover-Up: 50 More Things Everyone Should Know About The Chronic Fatigue Syndrome Epidemic And Its Link to AIDS