Fibro Awareness Day (May 12th) Entry #1

~If you have fibro, I suggest searching YouTube for Fibromyalgia, ME, CFS, FMS... there are some really amazing videos out there.~

I'm pooped - Emotionally, physically, mentally, spiritually. (breaktime-back!) I'm trying to stay positive, but the pain is worse than ever. Yesterday my teeth felt like they were burrowing needles into my gums.. the pain was so intense and so unrelenting, I hate this disease with a passion. Today I can't sit up for more than 5 minutes without my back feeling like it's been beaten for a few hours. My eyes are blurring all the time, sometimes I can't see the computer screen without leaning forward and squinting hard. Sometimes I hallucinate so much I just close my eyes and lay in bed, watching the images painted on the insides of my eyelids. The anxiety is the worst it's been in years. I'm so scared, so paranoid, so terrified of the future. Feels like I'm always being hunted, stalked, watched, judged, targeted by some unknown that I know is irrational. I am paranoid about everyone, even my family. I know it's stupid, but my brain's nooks and crannies don't seem to. I meditate, but my fatigue gets the best of me and I just pass out for a few minutes. I'm so sleepy. I need good sleep. The first thought in the morning is about the pain that woke me up, screaming to get help - but no one can help. I want to get a massage again, but my pain is too bad. The slightest touch lingers on my skin with a bruising burning pain. I want human touch, but it hurts way too much. Constantly thinking people are out to get me.. worse since I've started to walk outside due to the good weather.. people seem to need to call me fat.. like they can't resist it. OCD? Who knows. The last thought before bed? Please God, let me sleep. Let me get more than an hour, let me be able to get to sleep without self hypnosis and a handful of pills. I don't want to count backwards from 1000 and then back again a good ten or fifteen times before I either drift off into sleep or give up and watch TV while trying to calm my anger down. Insomnia makes me angry. People are always judging.. she's not sick, she's a fat lazy leech on society. She's lying, exaggerating. Why won't she stop complaining? It can't be that bad or she'd off herself.

The shrinks who did my psych eval said I'm not "depressed". Does thinking constantly about how terrified you are about life have a name? Does it have a name when thinking of death makes you smile? One day it'll all be over. One day you'll be free. One day you won't have to hurt, be sick, be judged, be a burden, be a leech. Even if there is no heaven, even if I've hallucinated all my dreams of heaven being real, I'd be free of constant pain.. constant torture. There is no way to make the torturer stop... I can't tell him the truth, there is no ransom, there is no end of the war.. there's only pain till death.

But they'll find a cure... they say. Maybe, and I have so many hours of prayer and hope that one day they'll cure us. They'll cure us instead of laugh and judge.. they'll stop Death from being a comfort, and turn life into a comfort.

I'm being broken down block by block, my personality is fading, my mind is slowly obsessing over how to stop the pain, and I feel more and more like Alice down the rabbit hole - only I'll never reach the bottom. I fall and fall, reality becoming a fable... losing my sight, my hearing sharpens to pain me, every touch painful.. I forget what pleasure feels like.. Hold on, hold on.. don't let go of yourself. I'll never let go. Are these pills making me worse or better?

My life has become simple. Struggle to sleep, deal with pain all day, try not to binge(food), pills pills pills, panic, sadness. Luckily there's also: Family, friends, my Gordon, art, music, short walks when I can, occasional shopping, and Guild Wars.

Will I continue to progressively get worse, as I have over this decade? That thought I try to banish when it arises. I hate being serious. Pain makes you more serious. I wish I could have a holiday.

Chins up, my FMS/CFS/ME friends. One way or another, it'll get better.

GRAPE AND PILLAGE!

(Huge Update Post)

Bike Ride

Oh the fun of freedom on three wheels.. Like the ladybug? That's my bell. Today I went on a long (long for me) bike ride by the Ottawa river. I want to get as much bike time as possible before the damnable snow puts a stop to my peddalry. Then I want snowshoes, so I can get wicked photos of beasts at their most winterized. Fluffy. This photo was taken halfway thru my ride.

Weight Loss progress

Yay I lost two pounds this week! Right now I'm doing behavioral conditioning to get me in touch with my non-pill-induced appetite. Harder than it sounds. Although I think this will be The Way to losing weight permanently. I can see myself doing this method every single day of my life and not getting tired of it.. Most diets are a huge pain in the ass.. but this isn't a diet. It's like you're using a computer and you don't know about a core utility program.. like specialized alarms.. this diet-changing method teaches you about the appetite alarm in your stomach... the one which many people (including myself) have learned to ignore. Now I actually FEEL hungry, and can tell the difference between psychological and physical hunger. Huge diff. So now, instead of relying on writing down all calories and all foods - this neat little notification program tells me when to start and stop eating to maintain a proper weight. Nifty. Some people are born knowing where this program is, of course.

Grape and Pill-age

Speaking of pills, I am having a party this weekend with some close friends - and of course I had to run out of painkillers. I have the hardcore twice-a-day controlled release pills, but not the "I NEED RELIEF NOW" pills. I have to stay away from alcohol, my normal method of replacing painkillers.. so basically I'm trying to use my TENS machine more and trying to meditate (I practice Raja Yoga routine, because one fuck up and I'm in big trouble. Emergency clinics don't prescribe Em-Strength painkillers. They prescribe crap like Codeine sometimes, low dose and high itch factor, just like straight Morphine. meditation) as much as possible. I'm paying more attention to my regular HathaOooh but I still like Morphine. Codeine metabolises into Morphine, but for some reason, it doesn't really tickle my fancy. Hurts my tummy more than Morphine. I'm on different pills that I'd rather not broadcast. They are the freedom givers. They free up some RAM for me, which is taken up by randomized pain-to-psyche distraction. A very temporary defrag.. but worth it.

People and Pain

Certain people lower pain... just by talking to them or being around them (etc). Mainly my Mom, my 2 close girlfriends, and a new Manfriend of mine is really quite good at it! - but one cannot rely on others... for a few good reasons... A) they can die B) they can decide they don't want you in their life C) they might get sick of being around you.. hehehe. I don't see my girlfriends as often as I'd like.. and my platonic guy friends.. wink wink.. come on guys, take me out!!!

Doggy and Pain

Of course Gordon helps a lot. Just looking at him and being around him makes me swoon with puppy love!! I groom him, train him, and play with him every day... and in my pain database, which I enter data in daily to track pain and other issues, I refer to my time with him as "PT" - puppy therapy.

Database and Research - Almost reaching the year mark!!

Yup, I have a database for my ails. Right now it's just a shitty spreadsheet, but I'm working on making a better database. I've had it for almost a year, so soon I will be able to work with the data and do something constructive with it. I've already tracked some very important patterns, which I will submit to various research organizations for Fibro, Endo, and CFS. New data, I think, as I am usually up to date on the latest published research in those fields. You can't rely on doctors to help you, Fibrofolks, Endofolks, and CFSfolks.. nope. Get researching, get reading.. I know it's hard at times, but it's worth it. BTW, I also like to make graphs.. hehehe pie charts, bar charts.. 3D even.. of course this takes me a shit load of time since I'm foggy in the head. I'll publish some here when I'm done sending it to the proper research institutes.

Electro-Goodness

My TENS machine was finally approved to be covered by the red-tape-beauties at Essential Health Services!! I was paying 51$ a month for the other one.. Hard decisions had to be made in my budget to incorporate this expense. Now I can go back to massages, and daily vitamins. Frigg, vitamins and supplements seem to be rising in price. I have a 1/2 cup of pills to take each day, including vitamins, painkillers, other supplements, etc. Isn't that funky? For the past two months I've cut on the vitamins and other supplements, so it comes to a 1/4 cup... but I've been feelings like crapola in certain areas. Some of the supplements I take: Spirulina, Multivitamin, extra Chromium, extra B vitamins, MSM, Omega 3-6-9, extra Calcium, etc. Why the extra? Well two main reasons 1) some of the pills I take eat essential nutrients 2) some experts call for more than the norm in terms of nutrients.

So that's the update. I have lots more to say.. but some of it is private and will only be shared with the proper females in my life!! And other stuff is still to come. I'm doing well, getting better inch by inch, am more happy than usual, and that's that! :) Thanks for reading this huge update ;)

Against Many Odds

"If it is once again one against forty-eight, then I am very sorry for the forty-eight." Margaret Thatcher (a favorite lady of mine)

I'd say against all odds, but I'm trying to be reasonable - and all or nothing phrases often are unreasonable. Often but not always. Anyway, pretty much all my pills have a warning upon their little while label which pisses me off on some level:

"May cause severe weight gain."

Well duh. You could have told me that, as I struggle to stay at a reasonable weight. I'm trying harder and harder, and hopefully I'll get on a decent plateau of good behavior in order to reach my ideal weight: 176. Why 176? Well I visited this site that calculates your healthy weight according to your height, age, and sex, and it gave my BMI weight as well. The BMI is insane. Apparently Brad Pitt is obese according to traditional BMI. Ridiculous. 176. Good number. Hard when you're on 7 different pills with 7 "Severe" weight gain side effect. Frustrating to say the least. I'm lucky I'm not 300 lbs.. which is my phobic weight... I fear it more than any other phobia I have.. although I trust in myself that I will not get there, I'm just too stubborn for that.

Which is not to say that is a gross weight at all. But it is a bad weight for someone 5"8 with an illness that causes intense weakness, muscle fatigue, and sleepiness. It's hard to climb the stairs when you carry that much weight.

I'm all for big people. I like the way we look. I like the comfortable feeling of laying around on someone without feeling mostly bones. But my ideal weight is 176, and that would put me again into wearing non-plus clothing - medium/large. Weird. I have to upload this photo of me when I was skinny.. it's too funny. I have it on my magnetic board to remind me that it's possible.

So against many odds, I'm increasing my efforts to lose weight. Through the pain, I see that it's important. 176!!


The image was created by me in Terragen, copyright 2006 Emilie L. I call it "The Peaks of Imagination".

This too shall pass?

WHEN!?
I have been practically bed ridden this week, I feel horrible. Each time I think I've experienced Hell, I regret thinking so - because it gets worse.. and worse.. and worse.
I'm pretty useless during these times, and it pains me to see Gordie playing, and I can't play with him much.. just a few minutes, then I'm sick and dizzy.
So much pain! I never thought I could tolerate this much! It makes me shake and sweat and really sick.
That is my update :)

Breath and breadth

Ooooh gosh. So sick. Can't stand it! I feel closer to knowing the full definition of physical hell every minute. I had a pretty bad asthma attack today for no good reason. My lungs decided to close up shop for a good minute, then spasmed for the rest of the day. When I mean closed up shop, I mean I could not breathe at all. Not a mite. Open mouthed and wide eyed, I fall into full panic. No thoughts, not even fear. You're clear during these times - breathe!

I tried to relax, relax.. my nails dug into the couch, my back and chest were infested with insects of pain and fire and panic. From the bottom of my chest to the top of my back, the pain is so intense. The pain! There needs to be a new name for that kind of pain! Sweat pours out of me, so much to soak through my tshirt in a couple of minutes, like I've been swimming laps or running up a hill in full Summer heat. Then, there it is, a breath, a single breath - my eyes pour out tears, Alice's tears that fill up and threaten to drown one's dignity. I cry and sob, knowing that my lungs could have decided not to open up. They could have stayed closed, how about that? Ha-ha (Nelson laugh) to my enemies!

On top of a friggin asthma attack from Painland, my pain's generally been worse, I think I have an ear infection, and a stomach bug of some sort. I hate stomach bugs. Intestinal bugs, fine, but leave my goddamn stomach alone.. it's where the goddamn pills go!! So tired.

But, as there always is a but in such sad posts, I'm okay. I'm hopeful, I'm still burning that inner flame brightly. All this pain and I'm still okay, that means something. I'm not brilliant and hop-skipping down the street, but I'm okay, and that's fine. We can't be greedy with our expectations, that's a might sweet way of getting yourself laid by Unmet Expectations, and getting preggers with Grumpiness. I hate leaving posts sounding like I'm giving up or that I'm beaten, and whatever foe I fight has won. Ha! Whatever. The callouses (sp, why isn't this in the spell checker??) on my soul are growing thicker, and I can get closer to the fire each time.

More like it makes me stronger. Every time the pain gets worse, it's like I get sent down into this deep hole for a few hours - hours of exasperation and anger and frustration and fear.. and then when I emerge, I'm okay. This doesn't come by itself. I usually meditate, read something inspiration, watch something inspirational, create art, play games, call friends, talk to family, hug, and a long list that I can't possibly write out.

Momentum must be started, that first domino falling, in order to dig out of the deep pity holes we have. It won't just come from the sky and rain down glory and candy when I'm down, so it's time to get spunky, creative, and time to stick up your chin and leave a big fat flaming bag of dog poop to the wardens of the pity cage. They sure can beat the hell out of you, but once your resolve comes in with a cake (baked in is an iron file of course), they're screwed ;)

-The picture is one I took yesterday, it's of a flower in my butterfly garden.

It puts the IM in Impersonal

I got rid of MSN Messenger and the Plenty of Fish profile (online dating site) in one shot.

Instant Messaging? Oxymoron wih most...

Instant messaging is a waste of time for me -maybe not for others, especially long dist relationships who can't afford the long dist phone costs. It's frustrating, time consuming, and it forms negative habits.. I can't tell what one really means without hearing a mood.. without seeing face or at least hearing breaks or peaks in the voice.. I get annoyed by sarcasm or just plain online rudeness. Faceless, great for creeps to hide behind. I get annoyed also at how I respond to these people.. and I hate waiting and waiting while someone takes their bloody time to reply to a simple sentence, so I get annoyed/frustrated with them easily. Why not just email me if I'm to wait so long? Am I supposed to just sit here and stare at this screen? I like multi-tasking, sure, but when I'm conversing with someone, I really like it to be a real-time conversation. Also, people can hide behind their messenger and lie their asses off, and there's no way to tell. My main beef with instant messages: impersonal interpersonal communication, lifeless and one dimensional. Like having sex through a sheet, or being blind and deaf when you're not (blind-and-deaf people must want to slap IM'rs and say "get off your ass and meet people in person"). If I am to talk to people, I want the whole real raw deal, where I have all my senses to take the experience in.

Why did I get rid of POF?

There were too many guys who were either rude, cruel, frustrating, and just not right for me. There were a lot of nice guys too, which I hope continue emailing me, but the negative experiences were just too much. Real life is just so much more visceral and exciting, and I'd prefer to talk in real time.. call me impatient, but I don't think human beings should wait 15 minutes to hear the answer to "what's up"?

I'm going to let nature take its course, put my trust in bigger forces.