Jadxia

I've been sick for so long wellness seems like a dream I had, a fond memory long gone in another lifetime. Everything changed, my schedule had to be adjusted for extra rest, fewer fun activities, and more recuperation time afterward. Yet I'm still determined to get better, so much so that I still hope to attend "bodyguard bootcamp" in the fall, along with regular college classes.

It was disheartening to learn some of my friends don't believe me. They think I'm just a hypochondriac, that the constant joint pain and fatigue are nothing more than lack of motivation. I won't deny a certain human laziness when it comes to things like doing chores or studying, but when I'd rather sleep than dance or spend time in a beautiful park? Yes, I get depressed and that makes me more tired, but it is because I can't do what I want that depression first sets in.

I love to eat but I'm often nauseaus now and lack of exercise is making me fat. My stomach always hurts. I hate being out of shape.
I don't have the energy to take care of all my chores to my own satisfaction, meaning I have to live with a less than sparkling kitchen or a dusty home at times and this makes me dissatisfied with my home.
Everything takes so much energy! I can't go shopping for more than an hour because my ankles kill me. I can't surf the internet some days because my hands hurt too much to navigate a mouse and type. On bad days I need help to open jars, which really pisses me off since the ability to open any jar (from my pharmacy days) was a point of feminist pride for me. Dancing is out, so I have stopped going to clubs because I found it depressing to watch without participating. My retired father walks circles around me when we go for morning strolls at the mall.
My balance is messed up. I fall on things and over things. I have to use a straw to drink from a glass so I don't smash the glass on my teeth. Sometimes the straw stabs me in the tongue. My hands drop things.
Concentration is difficult. I have a hard time learning things. Everyday things sometimes slip from memory. College classes loom impossibly difficult in the near future. How will I be able to study and learn?

This is not 'just growing older' as some people say. I know something is WRONG. I don't know what it is, but I am hopeful the doctors can help me before too much of my life slips away. Friends who don't believe when you are sick are not the kinds of friends to keep.

Walking the Labyrinth

Having given up on my original 'GutBusters' exercise program during week two (when I contracted a horrible stomach virus), I began again today. Spent most of the morning walking the mall with Pops, then hit the park for poi-spinning while he listened to the drum circle. Unlike the natural spinners, it takes me forever to learn even the simplest of moves. Also, I can only practice in small doses because it quickly makes my joints hurt (due to whatever is wrong with me). I had tried to get AgtOrange to come to the park with us, but he was working.

I did manage to drag him out to the DC Labyrinths and Sacred Spaces meetup last Monday, which started as a happy hour at the Dubliner. We arrived late for drinks, but in plenty of time to walk the labyrinth. AgtOrange thought walking to a pattern on the ground was ridiculous and settled in to take a few pictures while I did my turn around. I found it extraordinarily calming and meditative, especially since I had remembered my music and had tuned out the world using Loreena McKennitt.

Currently we are somewhat in contention as AgtOrange prefers sitting at home and doing nothing (i.e. internet surfing) to doing almost anything else. Sitting at home watching television all day drives me absolutely batty. Soon I'm going out on my own, then out more and more, and then I start not bothering to come home every night. For me, home is literally a place to hang my hat (and clothes) in between adventures. It is not that I am any less sick, either, but that having been forced practically into my bed for AGES I simply could not stand it one second longer, and have decided to go on with my life even if it kills me. Some days it does feel like it is killing me, such as the other day when Intern and I went out for a day of shopping. She thought I was bored, while I puttered and tried to convince her otherwise. It was just that my legs hurt. The next day I couldn't walk at all and my left knee somehow developed a bruise from the inside out, swelling up painfully.

AgtOrange is at least continuing with the Alternate-Day or UpDayDownDay Diet, although he cheats from time to time and isn't losing much weight. He's mostly maintaining, because he hasn't yet added exercise to this diet program. Hopefully that will change soon.

Tomorrow is my doctor's appointment, the one where I get the referral to see the other doctor to order the new tests to find out what is wrong -- which may or may not be fibromyalgia.

FOR MORE INFORMATION:
http://www.quinlanroad.com/ -- Loreena McKennitt's official site
Wikipedia entry Loreena McKennitt
DC labyrinths & sacred spaces meetup

Image linked from MindBodyFocused.com

So the doctor says I may have fibromyalgia, and I certainly do fit all the classic symptoms. There's only one problem in my mind.

Fibromyalgia is not a disease. It's a syndrome, meaning a group of symptoms, and can have different causes. In my case, it was a nasty gastrointestinal virus that had me bedridden for weeks. Now my neurologist just calls it "post-viral syndrome" and I've been reading everything from the Merck manual to crazy quacks on the internet and I have only discovered one key difference between fibromyalgia caused by a virus and post-viral syndrome. Post-viral syndrome goes away. It seems to me like I have a choice of habits, and I can make this illness temporary or permanent. Jade does not back down from a fight, especially not one for my life.

A little background on this illness. Looks like it is primarily caused by lack of good sleep. Specifically, alpha waves disrupt delta sleep, and it is during this stage of sleep that your body heals neurons. If the neurons can't heal, they become super-sensitive to pain signals, and can even create pain out of nothing. This pain, in turn, makes the quality of your sleep even worse, and you suddenly hit a downward spiral. Many things can cause this initial sleep disruption, general poor sleep habits, pain or injury, stress, a virus or any kind of infection. Producing growth hormone as a child compensates when you are young because it keeps your muscles and tendons loose for growing purposes. However, when you age you don't grow anymore and, if you also don't stretch regularly, those muscles and tendons start to tighten up. This also contributes to pain. I've slept poorly all my life. It's just unfortunate I waited so long to start changing my ways. Most chronic illnesses are formed from a lifetime of bad habits, and the longer you let the illness continue, the harder it will be to reverse.

For smoking, when is the best time to quit? After your first cigarette or after you smoke four packs a day for ten years?
For eating, when is the best time to watch your diet? Before your first heart attack or after your quadruple bypass from a lifetime of Baconators?
I have had bad sleep for so long now that only medical intervention (i.e. doctors and probably medicine) is going to help me to change. But one has to remember that these are tools to change and not quick fixes. If I want to get better, I have to adjust my underlying habits and that is a hard thing to do.

This morning I made a daily checklist on my road to self-recovery. It includes everything I need to do to promote general health in all aspects of my life. Some key fibromyalgia points include a morning joint warmup and nightly stretch, plus a daily 30-minute walk and vitamins. I can beat this thing; I know I can.

And it all started with my 'happy place', that state of being which is neither happy nor a place. It's when I tell myself, Jade, you may be stuck with this thing forever, so you'd better start dealing with it right now. Seems fatalistic, but it is only when I think this that I stop avoiding the problem in the hopes it will go away on its own, and start dealing with the messy habits which led up to the issue in the first place.

Oh, and then I solved world peace. Seriously. I just haven't figured out a way to start implementing it yet.

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