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Escapes and Venting Pressure

There are certain places that are escapes from the every day.. escapes from the malign forces in your life. Mine are: going for walks, playing World of Warcraft, and meditation. Lately these things have been polluted by outside forces that have brought me down to a level of flare up that I haven't yet experienced. There's no place away from Them. Them is a generalized term for invading forces into the land of escapism.
Walking, I meet up with smokers, inconsiderate off-the-leash dog owners, retarded teenagers ( I mean no disrespect to actual retarded people), and just plain rude people. Smokers give me asthma attacks. Off-the-leash dogs try to fight with my puppy or they jump on me and get my pants all shitty. Teenagers regularly block the route I'm taking and taunt me. And rude peope, well I think that covers a wide range of things.
Online, I encounter dozens of rude kinds of people. I am an online shrink apparently, as well. People dump their problems onto me, then when it comes to my side of the conversation, it's magically time for them to leave. Of course there are nice people, who will gladly listen to my end of the conversation, they'll talk with me and care what I say, they'll help me out and I'll help them out. Nice! Those people should stay, and then my perfect little escape would be complete. Of course it's filled with politics, rules, demands, expectations... like highschool but you're paying for it. I get 200+ Spam emails a day. I can't use instant messaging anymore... that was just way too much intimacy.
Now in meditation, it's so hard to focus. I feel crowded by people. I feel sickened by proximity to them - both online and off. Sometimes I'd just rather be alone on the planet with my loved ones, and just live my life quietly.

I live a very simple life. I think that's important. Not many people I know like simple lives. It's all about complications, added problems. If something is superfluous in my life - if something is costing me peace of mind.. well it's time to cut it out. And perhaps it's time to cut out my game, and find a new place to walk.

I hate dating. I hate the idea of marriage. They've soured me on it. Especially the last one. Disclaimer: this is not about all men so don't get touchy. It's about what I feel would happen to me. I suck at picking men. 1 out of 14 men was nice.
Here's an epic poem for the ages I wrote some time ago:

TOILET SEAT ROMANCE: Portrait I - Sept 30th

Fall in love - glowing heart
Kiss, cuddle, touch, meld
Linger, talk, massage, smiles
Can't wait to see you, don't be gone long
"Where were you? Why are you an hour late? I've been waiting.. all dressed up."
"I'm sorry.."
Kiss, shifting eyes, heavy heart, forgive
Move in, happy, wallpaper, wood screws
Plaster on your face, I wipe it off
We collide on the drop cloth and explode
So happy playing house, playing love
"Put down the toilet seat please"
"Put down the toilet seat."
"I've told you a thousand times, please!"
"I see you haven't put down the seat.."
The seat is up, he peed on the floor. How old is he?
CLANG as I put down the toilet seat and sully my fingers.
"Would you shut up about the toilet seat?"
He's not home yet: she's a nag
He doesn't care anymore: she's boring
I can't take it, will he leave: gotta shut her up
"Marry me, my darling" midnight bended knee in the park
Marry.. Marry? It's the answer! "Yes! Oh yes!"
White dress, black tux, tears of joy like crystals fall
Proud fathers and hesitant mothers
Bridesmaids rotting on the inside wondering when it's their turn
"It's cute when we argue about little things, like when he leave the toilet seat up.."
Honeymoon - home again.
He's so handsome: she's so sexy
Sex, oral sex, kinky sex; sex, oral sex, kinky sex, sex: Fulfilled, fun.
Sex, sex, oral sex, sex, sex, sex, kinky sex, sex: fulfilled, fun.
Sex. Okay. Fun.
.......
Sex, ok. Issue.
.......
Sex as an issue.
Sex is a regular issue
Sex?
Sitting on the couch staring out the window...
Silence. Clock ticking in the background, echoes the toc, echoes the tic
He criticizes: she sneers
Personalities seeping away, lives deteriorate
Sex.
Anniversary brings smiles and joy: "I will always love you"
Silence.
"Could you just once put the toilet seat down?"
"What the fuck is wrong with you?"
Make-up sex, kinky sex. Fulfilling, you remember the fire.
"Could you at least flush each time you shit?"
He raises a hand, eyes flushed
The only thing that regularly gets flushed.
Silence.
Awkward sex, like strangers forced to kiss.
Home repairs.
Weight gain.
Silence.
Learn to cook, learn to sew, learn to fix everything he doesn't
He smiled today: she didn't cry today
Dinner date, ice skate, beaver tail pastries under the moon
Spring, Summer, Autumn, Winter
Sex.
Mortgage, overdue, payment, bills, legal fees
Day trip to the beach, holding hands
Weight gain.
"You're fat" he jokes: she runs and hides under denim
Echoes of the clock in the living room
Empty, try to fill up
Full of stress, try to unload:
"What is with you and that toilet seat?"
SLAP.
Three steps back, bracing herself against the wall. Eyes wide, blood frozen.
The clock stops.
"I'm... so sorry," he can't believe
She understands, she tells no one
Diamond necklace, wrapped in promises
Of better days, and hotter nights.
Weight gain, wrinkles arrive right on schedule.
Why won't he have sex with me, she thinks pacing
Unkind washing machine tumbles on as she's holding his boxer shorts
Silence. Silence. Deafening silence. Horrible silence. Cold floor under bear feet.
"Why don't we go out anymore?" She asks, thinking: does he love me?
He sighs, thinking four letter words: needy, familiar, married
Sexy outfit - a secret bought during her lunch break
"He'll love it," says your friend
"He'll want you," says another
Take it home. Fluorescent lights. Mirror.
Blubber, veins, cellulite, mole; freckles? Or age spots?
Belly isn't flat, never was, but now it's an issue in that gear
Bulges, weird shapes, he's coming home any minute - "do I dare?"
The spirit of courage blossoms in her chest
Queen Latifa's wearing herself like a Goddess,
Margaret Cho's got the right idea,
Doubt: Elizabeth Hurley says she'd 'kill herself if she was as fat as Monroe'..
Monroe was skinny compared to me, compared to most...
doubts doubts doubts
"You're Fat" he said that year ago
Courage: Elizabeth Hurley is attractive for a transvestite
Wonder if she'll go all the way..?
Laughing in spite of the cellulite, blubber, folds, and moles
Courage: taking myself too seriously
He's opening the door, she hear his keys, lock, footfalls, briefcase on the couch
Lay on the bed, the Toilet of Venus except with a Negligee
Sexy face, sexy attitude
Up the steps.. he's coming
Eyes meet. His eyes survey. Disgust on his face.
"Hi honey..." his voice trails off, tries to hide the scowl. She's crazy. She's lost it.
"Hey," her smile fades with his, "you like?"
"Oh.. yeah, sure," he starts undressing!
Sex? Touch? Will he spoon? Will he massage? Bring the toys out? Handcuffs.
"Wait.. what are you doing?" She asks as he puts on some jogging pants
"Getting changed," he says as if she asked 1+1
Frown. What can I do? What's he thinking? Why isn't he turned on? He loves red.
Silence.
Birds outside chirping. A car honks its horn enthusiastically.
Silence.
Bed is no longer comfortable, neither is skin.
She sits up, cold and aware of her flaws once more
Cold and aware of his scowl as if it were ten miles wide
Wife: Husband. Silence.
"What's for supper?" he's still scowling.
What's for supper? What's for supper? What's for supper?
"Are you serious?" she can't look him in the eye.
"Yeah?" he's angry, "you know what, fine I'll eat out."
Storms out.
Sexy outfit is now a prison. She tears it off.
Late home, her tear stained eyes open as he unlocks the door
He's been drinking, he's been eating garlic
Pyjamas, into bed, tugs on covers. Goodnight.
Wrinkles, diets, exercise.
Toilet seat is up. Pee on the floor.
Anniversary, forced smile, forced dinner
Watch tv. Work. Sleep. Eat. Clean, cook.
Washing windows. Washing the full length mirror. Who is that?
She's hurt, beautiful, sexy - and covered in dust and cobwebs.
Courage. Confidence. Not so bad!
Anger. Disappointment. Frustration.
"It's been over a year.." she suggests: he tries to say kindly "I'm not attracted to you anymore."
What? Frozen again, but the armor of the Jaded covers her.
She doesn't ask, but he continues: "you're just too fat, honey."
"Fuck you," she points at his belly, "you're fatter."
His eyes flare again.
He doesn't ask, but she continues, "you're cruel and useless."
His eyes flare hotter than she's ever seen.
She walks into the bathroom. Back to the mirror.
I love him: I love her.
Pity sex.
In the mirror stares a vacant lot
We're in the waiting room for death
Work stress, home stress, family stress, house stress
Hugs, hand holding, love.
Spooning.
Silence.
Argument.
Car payments.
Familiar sex.
Maybe this could work out...
Compromise, cooperation, sacrifice
"I make more sacrifices than you!"
"Why should I have to...?"
Dirty socks on the table.
Hug, kiss, he's home
Who is he?
Silence
Required sexual intercourse.
The toilet seat is up.
Sacrifice, frustration: mitigation by flora
Cycles, routines, wheels turning
Sick: chicken soup
Period: he buys pads at the store
Fired from longtime job: he makes her dinner.
Automatic.
Aromatic herbs - he's making her favorite.
Peck on the cheek.
Rarely touching.
Holding hands as a treat.
I miss the beginning.
You forget the beginning. You now remember the slap.
Hold it against him. Nag. Hold it against him. Nag.
Why am I nagging?
He's drunk.
She's dead tired.
Work on it, work on it.

Oh... but wait....
He put down the toilet seat.
Anything is possible.
Courage.
Hope.
I love him: I love her.
They smile wisely.

Fin
---------

Of course I had to finish it optimistically.. I have to believe that one day some man will be able to put up with my baggage of sickness, tentative skepticism, paranoid fear, and history. And that maybe I'll get a man who I can have hope and courage in. A man I can cooperate with. A man I can live with.

The toilet seat, btw, is not literal. Each relationship has a toilet seat or two. Mine, with the exception of one, usually have about 10. Makes for good stories.

Why are my relationships so dysfunctional? Nature or nurture. I've given up looking. Too man sputtering starts this year. Too many men not interested in my heart, soul, and brain. I try not to look good... don't want to attract someone who'll only like me till I'm wrinkled and saggy. Then onto the next young thing. No, I want a man who'll like ME.

Forgiving the Inconsiderate

So much has happened in the past few months. I've been on overload and unable to write anything really coherent. So I'll try to catch up my tale and defrag my memory banks ;) Here is the first entry in the catch up.

Revelation
I was given the wrong prescription this month, and before noticing the mistake (I take so many pills it's really hard to remember them all) I had taken it for close to two weeks. During that time I was very irate, introverted, and terrified. I was so scared and all I could think of is death and dying and how I didn't want to kill myself, but I didn't want to live either - I was done! I didn't know what was wrong with me, as usually I'm strong enough to work through my problems. Even when I saw my brother's family, I felt a strong need to be isolated, and I had a great deal of trouble relating to my nephews and their parents. I had a great deal of trouble being near anyone, or even talking on the phone. My own parents were hard to be around, as my paranoia soared to new levels, and my anger grew to greater depths.
So when I found out about the mistake: I was really exasperated by the situation. I go to doctors upon doctors to heal me, monthly visits and daily handfuls of pills.... it really pissed me off that someone's mistake had taken me a step back. I'd been taking two strong sleeping pills (hypnotics) each and every night. When I stopped taking them, at the advice of the pharmacists, I couldn't sleep for days.
Anger and despair gripped me, as I felt out of control. Many things in my life were making my disease much worse - people's problems, finances, health as usual, and the weather's cage around me gave me the worst cabin fever in months.
I went to the pharmacy in that anger, that exasperation, and I was quickly losing my temper with the pharmacist. She was angry right back at me, never apologized, and patronized me in a way that made me want to slap her. I felt like I was going to cry. I wanted an apology. I wanted them to know how sick I'd been in the past two weeks, and that I trusted them with my many pills. But this pharmacist was having none of it. She hated me and that was that. She even told me that I had to be more polite - and that it was my fault for not noticing SHE gave me the wrong pills.. pills that they knew I was sensitive to. Yep, I'm intolerant to these meds too. So my energy was being sapped by the anger that continued to develop.
I got my money back (a substantial amount, my benefits only cover certain drugs, a good portion of my drugs I must pay for out of my living expenses) and the right pills.. but I was so angry. I wanted her to pay, I wanted her to suffer like I do.. I wanted her to say sorry at least. I mulled over this for a day - cried for hours at my situation. Not just the mistake, no, the most part of what I was crying about was the sheer helplessness that came with fibromyalgia. Your body is decaying, you're on poisonous pills, pain is the main focus of your life - and fatigue colours everything you do. This is of course a summery of FMS, quick, as it is certainly not the point of my revelation. Nothing new there.
People generally make my illness worse indirectly. You know, people dump problems on you and then won't let you help because you're just a disabled naive person.. what the fuck do I know? I just live under a rock. I am treated by the majority of the public like I am a lazy sack of horse manure, faking or exaggerating, or thinking I'm milking the pity of people around me. Most of them never even consider that I am really in a lot of pain and tired, most of them never even think that maybe I AM disabled and need help from people every day. They make fun that I live with my folks and my folks help me out. This woman highlighted all of this by intimating many of the perceptions others feel.
I was sick in bed, my pain at horrible heights, crying and feeling so much hate towards people - especially this rude pharmacist. I truly had sunk to rock bottom and didn't want to live, I was sick of being treated like crap by so many people. (NB: not everyone treats me like crap, many loved ones treat me wonderfully)
So on and on I went, unable to sleep, filled with anger, when I took a risk. I got a note card and a pen, sat down and took a deep breath. I understood what anger could turn a person into, I understood that it could make you just hate everyone and be sick to death of them. I felt that the pharmacist was in pain, especially by her actions and words. I wrote an apology for my anger and told her that I sensed her pain. I told her to take care of herself before others, and to share her pain with others. I told her that angry customers just need to be connected with - they need to know that someone understands why they are angry, and that emotion needs to be acknowledged. My hands shook as I gave it to the pharmacy tech (as the pharmacist wasn't there). I wondered if I was making a mistake. Was I being stupid? Was I doing wrong?
A couple of days passed and I thought she'd ripped it to pieces or laughed with coworkers about it - my paranoia still high from the pills I'd taken.
Then, irony came, stepped in. The humor of the Creator, if you ask me. My lungs started to clench, and I had several asthma attacks. My lungs felt like they were wrapped by many elastic bands. Liquid came out. So I went to the doctor and he gave me stuff to take- my lungs were indeed (are indeed) in a bad way due to some inconsiderate smokers. (Isn't it dumb to smoke right outside of mall doors and blow your smoke at people walking by?? Even if you're not allergic like me. But of course smokers are touchy and hate when I get mad at them when they send me to the doctor or to get hooked up on a machine for hours. Sorry smokers, I'll be more considerate.)
I went to the pharmacy, and as the tech was filling my prescription, the Pharmacist came to me and smiled. Never had I seen her smile. Her face was alien to me now, and I was worried she was going to say something mean through her teeth. But no. She thanked me for my consideration and was really touched by it. She was happy!
Such a small thing, I know. I didn't do anything Ghandiesque, but it took a lot of pain to turn my anger into forgiveness... to see that others are suffering. To give up my indignation and consider the plight of the person who's making me angry. It's so essential that we are forgiving.

I find that people see forgiveness as a weakness.. as an admittance of being evil... or as a way to sneak out of trouble. It's such a hard process to let down our personal pride, our dignity - both trashy qualities if you ask me - to give up revenge.. to give up our Cross to bear. When I stripped away my hate and my indignation, a pure emotion came over me - a neutral feeling that made me feel strong and weak at the same time.

We all need understanding.. even if the person we hate or dislike isn't understanding us - it's our duty to try to understand them. Otherwise we're just in a shell of pride, thicker and thicker until all we want to do is shy away from society... or worse, die.

On a last note, I don't feel that the pharmacist is lower than me because she didn't do what I did. People are people, at different stages of life and realization. I'd be stupid to expect reciprocation, for all I know she could be dying of a painful cancer. Emotions, like furious whirlwinds, stop people from seeing clearly. Life is too short to be mad. Life is too short to throw away our purity - however small the amount is left within us.

Creative Charity Drive for FMS that Anyone Can DO

First, the actual site for the clothespin challenge, and how to get your kit. Then, the article I learned about it from - which I learned about thru a lovely lady on the online FM support group.



This is the neatest idea for a Fibromyalgia charity drive... Click to learn more about:

"The Fibromyalgia Clothespin Challenge: Awareness at Your Fingertips"



I love it when they find creative ways to gather up money for research and development. In case you hate clicking, here's a tidbit.



"The National Fibromyalgia Association today launched “The Fibromyalgia Clothespin Challenge: Awareness at Your Fingertips” to commemorate September Pain Awareness Month. The objective is to keep a clothespin on your finger for 30 minutes. For each minute that you fail to keep the clothespin on your finger, a donation will be made to the National Fibromyalgia Association. (So, if you can only keep the clothespin on your finger for 10 minutes, and you pledge to donate $5 per minute, your donation is $100.)

“Fibromyalgia means living with stabbing, burning, throbbing pain every day,” says Lynne Matallana, president of the National Fibromyalgia Association who was diagnosed with fibromyalgia in 1995. “With this challenge, we want to call attention to the fact that you can remove the pain when you remove the clothespin, but imagine if you cannot. That’s what it feels like for people who have fibromyalgia.”

groan.

I am losing myself a little bit here and there. Like I'm melting in a giant oven and the heat is cooking my heart and soul into little walnuts of coal. A handful of reasons to stay keep me away from the great precipice I ache for daily. I will stay. Stay is a strange word in that context. Like an anvil.

New posts

It's been a really long time since I've posted on this blog.. but I hope to post more soon... I am posting on my private journal, which I am posting under an alias. I'm also playing World of Warcraft, which has taken over my dear Guild Wars... More later.

Tabard Competition

FMS Awareness Day entry #2

SO I wrote this to most of the contacts in my address book:
------------------------------------------------
Prescript: I don't expect you to read this all in one go, but please send it to everyone you know.

Hello Family and Friends!

Today is FMS awareness day and I wanted to take a little time to create a message to spread around, with informative media to educate and bring this silent illness out into the open. Research is happening, and new stuff about this illness is always being uncovered - I have great faith that one day a cure or at least an effective management of the disease for all sufferers will be found.

However, people still think this is an "all in the head" illness suffered by lazy folks, hypochondriacs, or just plain exaggeration... which is an extreme insult to anyone who suffers (24 hours, 365 days a year, for all their life) the pain and many symptoms associated with the disease. Awareness is the key to more research, understanding, tolerance, and most importantly - we won't be wrongly ashamed to tell people about our disease, dreading the usual judgemental responses.

I thought instead of sending just text site links, I'd give you some video links this time - videos tend to hold the attention span more easily than text, don't you think?

Fibromyalgia Video - a brief YouTube documentary on the illness.

Symptom Video - Covers the most widely experienced symptoms.
The P.A.N.D.O.R.A. International Video Advocacy contest winner (click here), very well done.
A great and brief CDC&P public service announcement video.

A personal account of FMS - blurry but the personal, emotional, and personal perspective aspect really come through. Here's another personal account - very detailed, but you'll have to turn up your speakers, it's quiet. I love how real this is, you can really taste the fatigue - physical, mental, and spiritual. Here is a real look at a pain attack, which a high percentage of FMS sufferers have experienced first hand. Also the aforementioned video shows the caretaker of this British FMS patient.

And last, but certainly not least, this wonderful Fibromyalgia Awareness video, that really shows how ignored this illness is, despite its severity. I especially like how the creator of this video pointed out that heroine addiction treatment facilities get much better funding than FMS/ME clinics.

If you need more info, here are some Websites:
http://fmaware.org/may12.htm
http://www.fibromyalgiasupport.com/ - this site is wonderful. News, resources, medical abstracts, tons of articles..
http://en.wikipedia.org/wiki/Fibromyalgia Wikipedia's article on FMS, along with a great list of links.
http://fm-cfs.ca/ FMS/CFS Canada: Compassion in Action.


Some Essential tips:
- Don't touch us, hug us, handshake us - wait for us to show you how, and tell you if we can that day. Most days a hug can feel as painful as a beating.
- Give us time to reply your phone calls, emails, letters. Sometimes the pain and symptoms consume our lives.. it's not personal to you.
- Once in a while, let us vent, and try not to openly judge. Don't offer obvious solutions, because I can assure you that most of us have read tens of books (and hundreds of articles) on this subject, we are FMS experts. If you find a news article on FMS, then usually we're more than open - news can be hard to find and contain golden nuggets of info.
- Help us. For the most of us, we can't do very much. Many are on disability for the simple fact that we can't even do seemingly simple tasks like cooking, cleaning, errands, etc. Once in a while it's a boon to get even the smallest helping hand.
- Don't judge, don't taunt, don't insult us about our disease. (Or anything for that matter.. lol.. we have enough to deal with)
- Don't comment on the number of pills we take. We know it's too much, we know we'll probably have liver and kidney damage later on. We've weighed the costs/benefits, and so have our cooperative team of very educated doctors. Don't think we're taking painkillers for the kicks, don't think we're taking sleeping pills and antidepressants for nothing. Pills are a constant battle for us, and we don't need more hassle.
- Don't expect too much from us. Don't burden us with responsibility if possible. We'll cancel often on you, we'll let you down, we'll get sick at the last minute, and we'll have to leave early from most functions we do attend. It's the nature of the illness, and I know how hard it is for family and friends to deal with, but it's as sure as the changing weather in Canada that we'll get sick at a moment's notice. It's not personal, it's essential to our health.
- Don't assume we're okay if we look okay. We're experts at hiding our illness, after years of practice. Many of us hate pity or negative judgement, and have learned to just keep it to ourselves as much as possible.
- Don't correct us when we make communication mistakes (writing, speaking) - as it's a product of brain fog. We know we don't make sense sometimes. We don't even make sense to ourselves most of the time, it's like being drunk most the time, without the feel-good feelings. ;)
- Don't be surprised at our forgetfulness, and try not to get mad if we forget something important. Sometimes we forget how to spell even the simplest words, remember the most important dates, or even forget what we were just doing or talking, or writing about.

I could give you a hundred more tips, but I'm on the verge of collapse after writing this. Even the simplest tasks like writing a letter can drain us like a marathon run.. draining us for hours or days at a time. More difficult tasks can drain us for weeks or months. Stress can drain us, flare us up to get worse, or permanently get worse.

Lastly..
If you have a hard time understanding how fibromyalgics feel physically, think of them with the worst flu you've ever had, with burns and/or bruises on your entire body, and you've just run 10 miles after not sleeping for a few days. You feel like you're 80 when you're 30. And you'll have to go through that every day, probably for the rest of your life.
But I'm convinced there's a cure out there, and all FMS patients can be cured. We can do it. We can get through this. Never give up, because one day we could be okay! Spread the awareness when you can.. awareness is the goal.

Thank you for reading this and thank you very much if you pass it on.

------------------------------------------------

And I got HATE MAIL back from three of the 50 people.

Why? They assumed I was pointing fingers and calling them a bad people. It was FMS Awareness Day, and I like to educate. I'm treated really well by everyone around me.. well except those three people who need to deal with their anger. Poor people, I wish no one would be stressed in this world and we could just romp around in meadows and amusement parks and sail boats and... well you get the picture. I wish people didn't get angry and consequently hurt themselves more than they hurt their target. - If people get mad at you for no good reason, they must have a lot of suffering to deal with. That doesn't mean you have to "Save" them, however.. people need to learn to help themselves. It's debilitating having people pity and coddle you, it regresses you into childhood and makes you expect and assume. Ask not what your loved ones can do for you, ask what you can do for them ;)

I must admit that my parents surely take such good care of me that I feel completely spoiled. I try to give back all I can in return, but it's never enough. Parents do so much! They go through hell and back for their kids. Well some parents.
I should never and will never be a parent, I'm too crazy. My kids would be paranoid eccentrics who know how to speak Klingon. Kaplah! (sp)

Back to the topic. I can also understand how some people that view my illness as fake might think the email was ridiculous. I feel sorry for them too.

This has been a great May 12.. next year I hope to have more goodness. Yesterday I was upset for so many reasons, but writing that rant made me feel so much better. I am starting to come out of my super antisocial period.. and even though I have less friends after today, I have more confidence in the friends I do have.