They say that having a routine really helps with your sleep cycle. I can attest to that, as recently I’ve had more motivation to get up in the mornings.

My folks are out of town, and so my dog is sleeping with me at the moment. While he’s pretty good about not doing a 6 am wake up call, he does want his breakfast in the morning. When I start to move to hit the snooze button, I hear a thump-thump-thump of his tail wagging, and he looks at me hopefully. I’m definitely motivated to make sure he gets to go outside and relieve himself in the morning, instead of getting desperate and making use of the floor.

I’m also helping to look after the garden. Huge gardens and summer heat means lots of watering. It’s best to water in the morning, so (A) the water doesn’t immediately evaporate in the afternoon bake, and (B) unlike in the evening, the leaves have a chance to dry off, which helps prevent disease. Lugging a hose around is heavy work, and I also do not want to do it in the afternoon sauna. (Seriously, this is our 11th day with temperatuers above 90 degrees F and horrible icky humidity.)

Anyway, having tasks in the morning has helped me move my out-of-bed time from 10:30 to 8:30.

Now I just have to come up with good motivation for when my folks come back.

The Diane Rehm show had an interesting segment on the power of meditation yesterday (June 22). There isn’t a transcript available at the moment, but you can listen to the podcast on her website.

I should mention first that Jonathan Foust – one of the guests on the show – is a meditation instructor of mine. So I’m rather partial to him anyway. I also emailed a question during the show about chronic pain, mainly asking what medical research there is about meditation’s effect on chronic pain. This was kind of a softball question, but I mainly wanted to see what they had to say about chronic pain.

I was familiar with the guests’ responses. Josephine Briggs (director of the National Institutes of Health’s National Center for Complementary and Alternative Medicine) didn’t cite any particular studies, but said that there are a number which have shown that meditation helps with chronic pain. Jonathan mentioned that meditation can help people change their relationships with pain. This is something I’ve written about before, so I won’t go into it in too much detail here.

Overall, the show seems like a good introduction to meditation and medical research related to it. One thing I did find very interesting were some comments from people who had tried meditation and had trouble with it. In particular, one caller said that he has serious concentration issues. How can he then sit down and meditate?

The general consensus of both guests to the show and those who called in are that there are a lot of different kinds of meditation. Some suggested that this gentleman try walking meditation, yoga (kundalini yoga in particular), martial arts, or some other meditation that moves his body. The trick is to find something that works for you.

I’ll be following up with a poll about your own meditation techniques.

I think I’d forgotten fatigue was a main component of fibromyalgia. The pain can be so all-consuming at times. Do I take medication or try to manage it through other techniques like meditation? What time is my physical therapy appointment? Am I sitting with correct posture, or is this going to hurt later?

Lately, the fatigue has really been getting me down.

Sunday went something like this.

9:45 am: Oh great! I woke up before 10 am without the alarm. I must really be making progress with my sleep, I’m so excited.

11:00 am: Well, I’m kind of sleepy. The couch looks really nice for a nap right now. But I’m trying to cut out daytime sleep, so I’ll avoid it.

12:00 noon: Okay, maybe reading will distract me from wanting to sleep.

1:00 pm: Right-o, I have to get ready for an appointment. That should keep me occupied.

2:00-4:00 pm: Appointment happening. My eyes are a little blurry towards the end, and I’m having some trouble focusing. Is this fibro fog, fatigue, or something “normal”?

5:00 pm: Food sounds really good right now. I’ll do that.

6:00 pm: Back at the house. What to do?

6:05 pm: Oops, I sat with my neck turned to the left while I was listening to someone. Now my whole left side hurts. Ow ow ow.

6:30 pm: Shit, this really hurts. I guess I’ll take some medication.

6:45 pm: And the meds are making me drowsy. Well, I guess this is as good a reason as any to take a nap.

9:00 pm: Woke up from nap. Dammit, this is really going to throw my whole sleep cycle off.

9:30 pm: Better head towards getting sleepy – maybe read a book or something.

11:00 pm: Sucked into the internet vortex of webcomics, news articles, and random nonsense.

12:00 midnight: I should probably go to bed, but this is really interesting.

1:00 am: Is it 1:00 already? Well, I’ll head to bed in a minute.

2:000 am: Shit shit shit, I was really hoping to get my sleep cycle adjusted. I’ll brush my teeth and such.

2:30 am: In bed. Trying to fall asleep with my new relaxation CD. It seems to be helping, although mostly right now my breathing is nice and relaxed and my limbs feel heavyyyyyyyyyyyy…zzz.

And this is the saga of my day yesterday. It really feels like I’m stuck in this endless cycle of fighting with sleep. Will it be relaxing? How to coax myself to bed on time? How to wake up in the morning before it gets really late? And of course, the struggle to avoid daytime sleep.

I’ve read all of this stuff on sleep hygiene and the like, but it’s so much harder to do in practice.

Sorry for the missed updates last week. As an explanation, I offer you a sample of last week’s schedule:

Monday: AM medical appointment, lunch, PM medical appointment

Tuesday: Breathe a sigh of relief because I don’t have any appointments. Make a few calls to schedule things.

Wednesday: Acupuncture.

Thursday: Spend an hour on the phone figuring out health bureaucracy, have a semi-panic attack, and get documentation in order. Call doctor at 9 pm to get advice on dealing with anxiety.

Friday: AM medical appointment, spend several hours sleeping everything off. Apply ice pack to foot every few hours.

Saturday: Go to a wedding.

As you can see, it was kind of a never-ending saga of appointments and phone calls. Not to mention an emotional crisis of sorts over what it means to have a “disability,” and feeling like I was going to spend my life going from one appointment to the next. Just as a reassurance – things are looking up now.

Updates may be slightly scattered for awhile, as I have a lot of appointments to go to. Blech.

Ever have one of those weeks where you have more appointments than weekedays? (That being 6 or more.) This isn’t that bad, but it’s rapidly approaching that number.

Being sick is sometimes a full-time job in and of itself.

I’m having a particularly bad flare of TMJ, which is setting off a ton of other medical issues. Combine that with “regular” appointments, and suddenly my week is full of trudging to medical appointments. Not that I mind all of them – I’m really looking forward to pain relief from acupuncture later this week.

It’s just that I sometimes start feeling like a walking medical study or something. I’m trying to focus on doing something non-medical every day, and at least some days with no appointments. (There may be calls to doctors, though.) I would elaborate further, but…I have to go to the doctor’s.

This is my first day this week without numerous calls to doctors’ offices or going to appointments. I’m going to enjoy it, so sadly that means no update today. Have a good weekend!

“What is epigenetics?” you may ask. “Why should I care?”

The best answer to your question would probably be for you to watch a short PBS video on the subject. Here’s an overview to wet your tastebuds. Be forewarned that this is the overview of a lay-person, so there may be some gaps in my understanding.

People are generally familiar with the idea of genetically inherited traits. You may have a genetic predisposition for bipolar disorder or fibromyalgia. Hair color, eye color, baldness – these are all determined by our genes. I was surprised to find that our DNA is not as static as I had thought.

Basically, environmental factors – what you eat, whether you’ve been exposed to certain chemicals, the nutrients your parents ate even before you were born – can “turn on” or “turn off” DNA sequences.

A tiny chemical tag of carbon and hydrogen, called a methyl group [affixes to a particular gene], shutting it down. Living creatures possess millions of tags like these. Some, like methyl groups, attach to genes directly, inhibiting their function. Other types grab the proteins, called histones, around which genes coil, and tighten or loosen them to control gene expression. Distinct methylation and histone patterns exist in every cell, constituting a sort of second genome, the epigenome.Epigenetics literally translates into just meaning “above the genome.” So if you would think, for example, of the genome as being like a computer, the hardware of a computer, the epigenome would be like the software that tells the computer when to work, how to work, and how much.

For example: There is evidence that BPA, a chemical found in plastics, contributes to cancer and obesity in mice. The mechanism? Epigenetics. Scientists are studying whether BPA has a similar effect on humans.

The really exciting part about this research is that there may be ways to change someone’s epigenetics. There have been preliminary trials of treating cancer with epigenetic therapy, with 50% of patients going into remission. With no chemo, no hair loss, no feeling horrible and drained.

Epigenetic therapy is still being researched, tested, peer reviewed, etc. But think of the possibilities.

Another thing? Bipolar Disorder and Schizophrenia may be linked to epigenetics. My hope? One day epigenetic therapies will be used instead of all the side-effect-filled medications I currently take.

Go, scientists, go!

I’ve been keeping a fairly comprehensive log of pain, sleep, exercise, food, weather, and general health. I’m still collecting data, and figuring out the best ways to analyze it. (How do I isolate variables when there are so many? I guess I should collect a lot of data points.)

There was one correlation that lept off the screen, and I thought I’d share it here in visual form. The two lines are “sleep quality” and “morning pain level,” both ranked on a 1-10 scale. In this case, one is the best possible scenario. Ten is really, really terrible.

See if you notice a pattern.

The part towards the right where it appears that there is only one line is actually the two lines overlapping.

I recently realized that I dread going to sleep. It’s not a nice, relaxing, mmm-this-is-going-to-be-good experience. I basically feel as though I go to bed, am unconscious (hopefully) for a number of hours, have the occasional bizarre dream, and wake up just as exhausted as when I first went to bed. I do not feel rested.

Apparently this is not normal, even though I’m so used to it at this point that I forget some people actually enjoy sleeping. Long story short, I’m going to see my doctor about sleep quality. Poor sleep is associated with fibromyalgia. I’m just hoping that something can be done about it.

It is with great relief that I inform you that I do not, in fact, have a stress fracture in my foot.

If I did, the treatment would generally be staying off my foot as much as possible, and perhaps wearing a cast or some sort of immobilizing device.

That would mean no walking for exercise, which is one of my favorite things.

The bone scan showed that it’s “just” a neuroma – so walking is still painful at times, but I won’t actively make things worse if I go for the odd stroll. Yay!

My Etsy Store

A fibro-friendly item from my Etsy store

I've been working on making fibro-friendly jewelry. I'd love it if you checked them out by clicking the image above, or going to www.etsy.com/people/RogueCrafter

About Me

This blog is intended as a place for me to reflect on my own healing journey, in the hopes that others may also gain insight from my experiences. I've "borrowed" a line from Robert Frost's poem, The Road Not Taken:

'Two roads diverged in a wood, and I
I took the one less traveled by,
And that has made all the difference.'

I think the most important thing for me now is that I feel empowered to be a force for positive change in my life. And that, my friends, has made all the difference.

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