Tired of the WTF titles...

I approached the second week of Boot Camp with a bit of trepidation. I had had such highs and lows last week and I still couldn't fully move my neck. And, frankly, I WAS worried about my hypoid muscles.
I arrived wearing velvet sweatpants, a black shirt with leopard print on it, my Twilight sweatshirt and a fanny pack. Yes, a fanny pack. Although I prefer to think of it as a hip belt. I had to wear it because of my broken neck. All in all, I was impressive. I was shocked Tyra Banks didn't chase me down and crown my America's Next Top Model right then and there.
I arrived early and, as soon as PT saw me, she asked about my neck and she put my neck in traction! It was an odd sensation, but felt really good. I then did 15 minutes on the treadmill. This is nothing for your average person, but for me, it's huge.
During the PT session, I wasn't sure how to approach PT about my neck and my hypoid muscles. My opportunity came when we were each to show our favorite exercises we were doing at home. One of my fellow campers was demonstrating a neck twist that my PT did not want me to do and, since I wasn't showing the proper enthusiasm for it, PT came over to (I thought) force my neck into position. I jumped back and she looked at me, quizzically. I then had to explain the whole hypoid muscles scandal. She nodded, but said she felt I had a "joint mobilization" problem, not a muscle problem. What? What does that mean? She said we'd work together at the end of the class. We didn't. I still don't know how and who should mobilize what where??? For the rest of the time we did Pelvic Clock rotations, which were odd but fun, and theraband exercises. She stressed that we needed to do these every day, along with our (approved) stretches and our walks and our aerobic exercises.
Now, could someone figure out how to fit all this extra stuff into my day? Oh, right, we have to take that time away from something else, from SOME one else. Fun. Not my strong suit. PT wanted us to make sure we explain to our support systems how necessary all this was. So here I am telling you...and telling me, I think.
In OT, we discussed sleep. Sleep, that elusive nymph. Fibro patients tend not to get into Delta sleep, the sleep where the body and mind can truly heal themselves. We learned that this can lead to severe fatigue and decreased activity endurance. Um, yep, did realize that. Fibro patients often also suffer from restless leg syndrome (ME), which also makes it difficult to sleep. The constant "fight-or-flight" response that is present in Fibro patients makes it impossible to allow the para-sympathetic system to kick in and perform its function-which is to regulate our internal states-digestion, sleep, managing pain and emotions and healing the body.
Here are some rules we learned regarding best possible sleep hygiene, as they call it. (I have never liked that term. It sounds like one should sterilize oneself before getting into bed.)
1. A routine is extremely important. This regulates your body clock. How many times has someone told you to go to bed and get up at the same time, even on the weekends? It sounds so good and reasonable, but, come on-how can one do that? Especially with children.
2. Exercise each day. Obviously good no matter how one sleeps.
3. Get outside into the sunlight as soon as possible after waking. Stay there for at least 15 minutes, and this should be done between 7-9 am. This is another good way to set your body's biorhythm . This is something I hadn't heard before; I am happy to get new information that makes sense to me.
4. Bedtime snack of complex carbs helps brain to produce serotonin, which is the chemical that actual gets you to fall asleep. I like anything that tells me to eat MORE, so I am happy with that one.
5. No naps! Thank god someone finally says that because I HATE naps. I hate the feeling of waking up groggy after a nap and realizing it is not morning and probably close to dinner, which still hasn't been made (or ordered, in our case). Ugh. And someone is always trying to tell me to nap...not anymore, sucker.
6. No screen time an hour before bed. That is a tough one, all around....
7. Make the bedroom dark, clear of clutter, filled with soothing white noise.

Anyone who has their own child knows the best way to get a kid ready for bed is with a bedtime routine: a bath, some stories, written or told, a little alone time. This is also necessary for adults. We just don't do it. We rush, rush, rush, and then fall into bed, filled with stress and adrenaline.

Ok, Ok, so I get the sleep hygiene thing; however, I don't see how any of that will help the actual chemical processing problem. We were so busy talking about what we would change in our sleep routines that we never got around to that question. Tomorrow.

In the Psych section, we went over how learning to be aware of our thoughts, emotions and behaviors can help achieve good mental health, which will help us live with a greater quality of life. It is far too easy to let negative thoughts take hold and take over what could and should be pleasant parts of our day. Limitations, chronic pain and depression are all parts of the fibro life. Paying close attention to how negative thoughts impact those areas will allow us, eventually, to let those negative thoughts go on their (un)merry way and leave us to deal with the realities of our life as they truly are. Pacing is a key skill, and this is something that will actually just need to be drilled into my head. Psych told us what we already know: a typical fibro person "yo-yos" through activity cycles of manic overdoing only to fall into complete inactivity due to exhaustion and pain from the mania. Obviously, this then would trigger negative feelings (guilt, angry, frustration, depression.) Fibro patients are in a constant state of arousal and not in the good way. We perceive lights, sounds, smells, etc. as an attack so our heart rates and blood pressure are up, our muscles tense-ready to run or fight, our breath is shallow, our extremities are cold and our senses are oversensitive, which then leads to a catch 22.
Here are some of her tips for allowing that parasympathetic system kick back in:
1. Adding at least one pleasurable activity into each day. (what, cleaning up eviscerated mice from my office bathroom doesn't count? Thanks to my dear cat for the gift, though...)
2. Resting. What does that mean? I still don't really know.
3. Pacing. Hand me that drill for my head, please...
4. Breathing-we did more breathing exercises, including a progressive muscle relaxation which actually did work. Interesting fact-women, especially, have a hard time getting the correct amount of oxygen in their blood. Why? Because we learn at a young age to hold in our stomachs. This limits our lungs capacity for expansion and, therefore, we end up taking only shallow breaths. Less than optimal oxygenation in our blood can lead to many functions in our bodies not working as intended.
and 5. Be conscious of your thoughts. Don't be a slave to your emotions. I Must Learn This One.
Most of all, it is important to practice all these things in order to try to retrain the parasympathetic system.
I left feeling positive. Yes, there were some parts of this program that was the same old pig in a new dress, but there were also new farm animals and they seemed to all be going to prom...ok, I have completely lost that metaphor. Basically, I do like having all this info (old and new) in one place and I know that I have the capability of figuring out which ones are actually useful. It's still difficult dealing with the "hypoid v. joint mobilization" issues-one doc/Pt/etc against the other. I want to arm myself with the most current knowledge so I can help make those decisions myself.
As I was leaving, I was given (not from the Bootcamp) info about a new drug that has helped fibro patients tremendously. It is called Avinza and I planned to ask my doctor about it. However, when I got home and read the brochure, I realized it is time-released morphine. Yes, I am in pain, but I am terrified of these hard core drugs. But, damn, those brochure pictures sure make it look benign and those people look so happy....well, they are on morphine...