Writing, Shipbuilding, and Fibromyalgia

Not much pain today until this afternoon - it was getting close to a 3 or "bad" so I took a Flexeril and 10 mg of loritab.

I'm trying to not let my pain level get so high that I can't do anything - trying to intervene before a 4.

Over the last few weeks I've been working on my school presentations, translating my book Helicopters into Spanish, and helping Randi, Carl and Aden move in.

Translating a book, even an elementary book, is a lot of hard work, mostly because my Spanish is based on conversations with the neighbors about tools, houses, divorces, and kids.

The kids and grandkid are settling in to their new apartment. We turned our CNC room into an apartment. Times like this show how broad Doug's skills are - he can manage large databases, write scripts, nearly automate himself out of a job, build cabinets, fabricate household items out of aluminum, and build a boat.

Even though it's been windy and cold I'm looking forward to working on the sub and boat again after our slow-down over the last week.

Surprisingly a lot - we're going to use the windows in the pilot house, the drive shaft, steel beams for spreaders when moving plates of steel, foam in the cushions and steel on the roof to be made into wall art.

Wonder what the neighbors are thinking now?

Sometimes I can't get to sleep at night. I guess that makes me an insomniac. I try the usual strategies - a sleep aid, soft music, deep breathing - and sometimes they just don't work. So after 20 minutes or so I get up and go to the couch. Often I read a sleep inducing book like Woe Is I: Grammar Hints and Tips. That can help but last night it didn't. So I read my kid books and ham radio books and watched the sun come up.

Having a few hours to read books is usually great but when it's at the expense of good, solid sleep I know the next day is a "lost" day. I have to catch up on the missed sleep as well as try to control my pain levels, which rise with insufficient sleep.

I wish I felt like cleaning the house when I can't sleep - then all would not be lost.

I'm looking forward to doing school visits. It gives me a chance to talk about my books for hours and no one minds!

So, this week I've been working on my school presentation PowerPoint presentation. I really like how it's turning out. I've put in movies, which is a first for me. And I'm learning to keep the slides simple and on target. Both these ideas were Doug's - thanks, Honey!

Over the last few days, my pain levels have usually stayed under a 2. I feel like I've gotten more done this week, which feels good, too.

It may be raining outside but I'm sunny on the inside. :)

I managed to sleep today until 10a with the help of valerian, so my pain level has stayed below a 2 most of the day.

And I'm working on my presentation. Hope to have it done this week so I can practice it next week in front of a live audience - first Sam and Andy, then Doug.

My new series, Military Machines in Action, will be released in January '09. I certainly am excited about that!

When your books finally get published it's like giving birth. You've been waiting all this time to hold your "baby" in your arms, or rather hands.

In September a new study was released via the journal Brain. The researchers write that fibromyalgia patients often report memory and attention problems in addition to pain, stiffness and sleep disturbance. What they wanted to determine, though, if fibrofibromyalgia patients' memory and attention problems have any correllation with changes in the morphology (structure and shape) of the brain.

The researchers conclude that the study's results provide clear evidence of memory and attention problems in fibromyalgia as well as the correlation of both pain and neurocognitive problems with brain structure.

"Our data suggest that, in addition to chronic pain, [fibromyalgia] patients suffer from neurocognitive deficits that correlate with local brain morphology in the frontal lobe and anterior cingulate gyrus, which may be interpreted to indicate structural correlates of pain-cognition interaction."

Bottom line, chronic pain changes not only your cognitive skills it is also correlated to a change in the structure of your brain.

Even when I was a kid, I liked thinking of myself as smart. So to be faced with the fact that my brain, the actual grey matter stuff, has been changed and that change goes with a lessening of my "smartness" level saddens me. I feel like part of me has slipped away, and I wasn't even aware of it.

Most of today my pain level was under a 2 but my left upper arm continues to ache and affect the muscles in my neck.

But today I got more done than I had in a number of days. I worked on our finances, read and wrote emails, worked on my presentation, had my flue shots and ate lunch with Doug, so I wasn't going to have to fix dinner. :)

When I started to write my post on Friday, I began with trying to define what made a good day good and a bad day bad. Then I decided in reality they are all good days because:

• Every day I have the love and support of my husband
• I have medications that help me manage the pain
• I have the perfect job for someone with chronic pain - I work from home
• I really am a half-glass-full person

On Thursday my pain level was at a 3. I tried my usually steps - exercising, cleaning the house, yoga but by evening it was a 4-5 even after 10mg of Loritab and Flexeril. So as Doug and I talked about it we decided I had not been getting enough sleep. We figured maybe I just needed to zone out for a day. So on Friday, I took a Lunesta at 9:00 and then slept with few interruptions until 4:00. That was a lot of sleep and it did help. I've also started takig Flexeril at night to relax my muscles so I stay asleep for the whole night.

On days like Thursday and Friday I don't get a lot done. I try not to feel guilty about it and instead stay veiw these times as regenerative and necessay.

On to Saturday and Sunday, we have beautiful weahter! Doug mostly shopped for parts for the airlines on the sub which turned out to be complicated that anticipated. Since I had taken so much medication on Friday, I was a little unsteady on Saturday. On those types of days I do not use powertools. But I can go fetch them. :) And on Sunday, we laid in the pond enjoying the unusually warm weather and then dried off in the sun, naked. Mmmmm - felt like being on vacation. :)

So, to me each of those days were good days and some were really good.

Chronic pain redirects your brain. It actually changes the neural pathways and "hardwires" your brain to attend to your pain, even when you aren't experiencing any at that moment.

This means that I now have trouble focusing on tasks that require complex problem-solving, such as writing. At one time, I could write for hours and review multiple resources and then synthesize all that info into a comprehensive piece of work. I can't do that now, which often frustrates me. However, I'm learning to adapt to the changes in my body and brain. Doug has been supportive, encouraging, cajoling, directing, ordering in helping me to face these changes.

Pain level today:
0800 - Level 2. Took 3 valerians, read my email and news until they took effect, and then slept until 1030
1330 - Level 2. Put 2 miles on the elliptical machine.

Having a plan helps me to manage my pain on a daily basis. Often when I would know that I was getting ready to go through a downturn on the cycle, I would become anxious and depressed. So my husband and I came up this one:

Level 1 - Little to no pain. No interference in physical or cognitive skills. No needs for meds. Usually I need 9 hours of solid sleep to maintain a level 1.

Level 2 - Rise in pain often first noticed as the ache in my upper left arm and shoulder. I begin to twitch and stretch my left shoulder - that a big tip-off to my level of discomfort. This starts to happen when I become tired, didn't have enough sleep or haven't be active enough. I can still perform my routine physical and cognitive tasks. I also usually don't feel anxious at this step. My med regime is often valerian with passion flower or ibuprofen. Now is a good time to do extra yoga or walking.

Level 3 - All over pain - in my left shoulder, neck, back of head, between my eyes, behind left or right ear, sharp quick pains in extremities. Cognitive functioning decreases - memory, problem-solving - and so do physical abilities - coordination, balance, fine motor skills. The medications necessary to alleviate the pain at this level add to the mental and physical abilities - Flexeril and Lortab. Both make me drowsy and fuzzy-thinking. At this stage I stop using power tools (not a good idea to handle tools that spin at 6,000 rpm)

Level 4 - High level of pain. Time to take some meds and zone out for a day or two to recuperate. I can do simple tasks like housecleaning, laundry - puttering stuff. I usually can't read at this level but I can listen to audio books.