Saturday, November 30, 2013
I've tried contacting people at BC Hydro by a few other means and I've been completely ignored. Let's try a new route.
I pay between $55 - $65 per month in hydro electricity. To give you an idea of why this is ridiculous, a friend in an apartment a third again as large pays at least half, sometimes two thirds, as much. Caveat, I am home most days due to being disabled and not working, but you'd think that would lead to a symmetry in my usage, not spikes in the weekends. Yes, I have a washer and dryer, but I use them once every seven to ten days, not every single day. When I went away for three weeks, my bill was equally ridiculously high even though the only thing running was my refrigerator. While my refrigerator may not be the most energy efficient model on the planet, some how I don't think it's using $65 worth of electricity on it's own.
I have been promised an "investigation" when I phoned. No investigation was ever performed that I can tell. I suspect this is all a matter of a mislabelled meter, nothing more, nothing less. I'm also willing to believe that the smart meters aren't so smart. I have had letters ignored. When BC Hydro announces they're hiking their rates something like 26% over the next several years, I get cranky. I'm already overpaying by a good deal - and even if I've been paying someone else's bill since the smart meters went live, I'm pretty sure I'll never see a refund. However, I'd kind like this fixed so I'm not paying more for electricity than I spend in six weeks of gas for my car.
One disabled woman, one laptop, one fan, a gerbil, a refrigerator, a barely used oven, and semi-regularly used kettle and microwave shouldn't generate this much. I'll start doing the actual math if BC Hydro continues to ignore me and then pitch a real fit -- via the news media.
The realistic answer, however, may be to start getting Freddie the Gerbil to generate electricity by running on his wheel.
Monday, November 25, 2013
Kuseno pillows, at their heart, are buckwheat shells in a pillow case. High quality craftsmanship is just the start of it. Each pillow is zipped so you can add or remove the hulls as you want to for a customized experience. They're heavier than a normal pillow, but they are squooshier as well. I liken them to sleeping on a beanbag, without the lumps.
I can't speak for anyone else, but when I sleep, I normally wake up every forty minutes to an hour, get up to move around due to pain, then go back to bed, readjust my pillow and try to get back to sleep. That getting back to sleep can normally take between ten and fifteen minutes. Since switching to a Kuseno pillow, I don't have to adjust the pillow, I just have to fall on my bed and am go back to sleep. My stiff neck and vague headaches on waking up are a thing of the past .
If you enjoy a firm pillow, Kuseno is perfect for you out of the gate. I, personally, like a bit of sponge to my pillow, so I slipped a flattened cheap pillow into the case and it's perfect. The buckwheat holds the shape I want, the much abused cheapy pillow, adds a bit of softness and I sleep as well as I have since before I first met fibromyalgia.
I give Kuseno pillows a very big thumbs up, and not just because they'd probably give a great whumpf in a pillow fight.. and it's gluten free. ;)
I went to the new Canadian Target. I'm not sure exactly what I was expecting beyond "Zellers with a new brand name," mostly due to all the flack and bitching I've been hearing.
Zellers was Canada's Wal-mart. It was a cheap product big box store. The quality wasn't great, but it was very much get what you pay for. The problem was, it was grungy. Its interior design was very crammed together and the colour scheme made you feel like you should power wash the whole place with bleach. It didn't help that none of the stores had probably had a face lift since the mid 80s. Their stores were often old and looked it. Target was bright, clean, room to shop, and had selection. I didn't feel like I was walking into Zellers at all.
I didn't do much exploring, but from the bits I meandered through, it was laid out similarly to the American Targets I'd been in, had similar product types and quality and had elbow room to shop with. Was it more expensive than Walmart? Yup. Y'know why? Because they don't treat their workers like they're in Victorian England. Their workers have better working conditions, better pay, better treatment all around. Also, when Walmart came to Canada, it got a deal with our government that keeps its costs lower -- Target didn't get that deal.
So, really, the choice isn't "Shop at Walmart and pay less or shop at Target and pay more for the same stuff" it's "Shop at Walmart and support the abuse of the working class, or shop at Sears, or Target, or HBC, or Real Canadian Superstore and support Canadians." If you want to shop at Canadian institutions, Sears or Real Canadian Superstore will happily accept your money. Walmart treats its workers and everyone to do with them like crap, every time you spend a dollar there you're supporting this. You're perfectly okay with people being treated like crap. Don't just post things to Facebook; talk with your dollar.
Many bitch they didn't have any choice but to shop at Walmart, well y'know what? You do now. I get told they can't afford NOT to shop at Walmart, try to have a few less wants. Superstore is on par price wise with food and home goods. Sears is more expensive but their clothes and products are also of a higher quality and will last far longer. HBC still has the most awesome blankets on the planet.
I give my local Target a thumbs up. All I need to do is find the yarn/crafting section.
Thursday, November 21, 2013
If you've been living under a rock or are one of the lucky who aren't addicted to Facebook, Twitter, Reddit or Slashdot, you may not know it's time for the 50th anniversary of Doctor Who. Yup, fifty years since the first show aired, a whole bunch of "Doctors" later and we have fifty years of a mad man with a blue box.
For those not fans of the show, the gist is simply he's an alien who can go anywhere in time and space, goes where he's needed, not necessarily where he wants and drags human companions along with him for the ride. It's dark fairy tales, exploring what it means to be human through aliens, humour, satire and darkness.
I stumbled across a thread of people bitching how sick and tired of Doctor Who "stuff" they are and insulted the show and the fans. Are people really that shallow that they can't just smile, shake their heads and move on? I'm sure there's lots of things that are popular that the minority didn't like. I didn't "get" Breaking Bad. I didn't curse, bitch, moan, insult and harass anyone who dared talk about it or enjoyed it. I think baseball is just about the most boring sport in the world, but again, glad it brings people happiness. How hard is it to just skip over the posts that involve that which you, personally, don't enjoy?
Are people so full of their sense of 'you are special, unique and the universe revolves around you' that they expect other people to put their own small pleasures on hold just because it's not something you enjoy? I could get it if these people have to go way out of their way to avoid the fluff, but seriously, any show making it to fifty years would get the celebration. Just wait till Star Trek hits fifty in 2016 for even more of this sort of mayhem. Heck, what about those who don't celebrate Christmas? They get to endure the same nonsense every year!
So you don't like something, that's fine. I don't think anyone is chaining anyone else down and making you watch anything. If you gave the show an honest try and said "Nope, not my thing," then I don't think any Doctor Who fan wouldn't respect that. (Okay, at least the non-butthead ones would respect it.) I don't think anyone is saying "You HAVE to celebrate!" or "You HAVE to enjoy!" so why do these people find it necessary to try and pee on the corn flakes of others? Bitterness? Jealousy? Feeling excluded so everyone has to come down to their level?
I don't get it and I'm not sure I want to get it, probably because I'll be too busy enjoying a community that welcomes anyone who appreciates a mad man with a box.
Wednesday, November 13, 2013
There is an article going around the internet that is essentially "OMG! Secrets of vaccines revealed" and I've had seven people send me the link. The article lost me with the horrific grammar and abuse of quotation and apostrophes. Overlooking the list of links to conspiracy sites, overlooking the abuse of the English language, and even overlooking the need for humans to find some big bogeyman to blame for everything wrong with our universe, I can find countless sites disproving humans landed on the moon. We plain didn't have the technology at the time. You can find sites on the internet that will take all sorts of morsels of information and twist them ten ways to Sunday. By the way, those hidden sessions are well documented here and have been for years.
That said, I'm pro vaccine; it's not a secret. I have several friends who are anti-vaccine, whether it comes to their children, themselves, or both. What if we hadn't vaccinated against polo? Small pox? Would you wish the chance of either on your kids?
"But Lorna, it's JUST the measles!" (insert chicken pox, etc, in place of measles as you wish.)
From the CDC, "About one out of 10 children with measles also gets an ear infection, and up to one out of 20 gets pneumonia. About one out of 1,000 gets encephalitis, and one or two out of 1,000 die. Other rash-causing diseases often confused with measles include roseola (roseola infantum) and rubella (German measles)." That's the AMERICAN stats, people. It's not much different in Canada. And those are just the stats for one disease your child will probably get due to the growing trend of not vaccinating.
You're giving your kid a .001% chance of death if they *only* get the measles. You may say "That's not a big chance, Lorna." Do you know what the chances of complications from a vaccine are? I didn't either, I did a Google search. The answer from the CDC is 1 in 1,000,000. While, yes, people play the lotto with worse odds than that, you're saying that your child's 0.000001% chance of having deadly side-effects from a vaccine are more important than your child's 001% chance of death from the disease.
And it's not just your kids. It's every kid your child gave the disease to before your child started to show symptoms. Does your child have any child at their school with a weakened immune system? A kid in treatment for leukaemia? An adult who is HIV +? This isn't your problem, you may say. That child's parents should vaccinate or not vaccinate then, you may say. That would make you a pretty shitty human, I say. Not only are you are placing the needs of your child over the needs of every child on the planet and some adults too, you're putting the needs of your child over the needs of those who can't get the vaccine. (And adults have a much higher mortality rate.) I have been told "That's what being a parent is about." And maybe it is, because let's face it, I don't have kids so I don't know. However, my parents got me vaccinated and my Mum is an RN and any who have met her will know she's a rather smart cookie, a smart cookie who would investigate things being put into her children pretty closely. Vaccines have only gotten safer since the mid 1970s.
Diseases that should be disappearing are making a come back. They're killing children. They're killing children at a rate that would make a serial killer go "Holy [cow]." Why is it so okay for you to enable the death of others just because of something you read on the internet?
It's been proved that vaccines do not cause autism. It's been proven that there's more mercury in your drinking water than there is in the average vaccine. Don't give me this crap. Don't be a selfish, unsympathetic human being and go get your children their vaccine. Hell, even do it for your own kids, they'd be better off.
There is no conspiracy to take your or the government's money. There's just a conspiracy of people like those who make computer malware; they think it's funny to mess you up.
Sunday, October 20, 2013
Today I was asked if I would move back to Scotland and I wanted to say "In a heartbeat." The truth, however is more complex as the truth often is. Would I move back to the Scotland that is in my memories and mind, in a heartbeat. However, that Scotland is the wonderful land where parents did the worrying, where school was easy and the teachers (nuns) catered to my individual voracious learning ability, and money was never an issue.
Britain, right now, is in more of a political and budgetary mess now than when we left in '82. Money and politics wasn't exactly the reason we emigrated (as with any life decision that huge, there were a host of reasons 7 year old me didn't grasp) but it was certainly a factor. Mum could make much more money in Canada than she could in Britain. Dad had the same confusing spaghetti mess of career paths to walk in Britain as Canada as a retired member of the military. So off we went.
NHS is a mess. Real estate is a mess. Politics are a mess. The politics are far more similar to Canada than Canada's is America, so I understand their logic and lack there of much better. I understand how they got where they are and can see how they can change their course to see where they want to go. American politics, and politicians, baffle me. How people can vote for a party purely because its "their" party, makes me do the Jackie Chan "WTF?!" pose. I swear, that in the States, that if the Democrats required eating a puppy for breakfast, people would still vote Democrat because they've always voted Democrat. Women who vote Republican (right now, as the party stands) are equally crazy. It's your vagina, ladies.
But I get off topic. Would I love to have a small home near high street in Elgin? Absolutely, without a doubt. I'd love to be back in my other home. I'd miss to Chilliwack, I'd miss my Canadian friends and family, but part of my soul says "I want to be in the Highlands." Could I ever financially make it happen? No.
In theory, if I REALLY wanted it, I could make it happen. I could sell my condo, pack up my necessities (which would fit in one suitcase) and pick up my butt and just get on a plane. I could then look around, survive the few months requirement before I can qualify for council assistance and get on with my life. In practicality, however, its a bit trickier. Can Scotland afford me? No, probably not. Canada can, no matter what our politicians say. Should I move from being a burden of kilograms to being a burden of tonnes? It's not fair to the people. It wouldn't be fair to my new neighbours. How can I say "I love this place" and then promptly make it a more difficult place for everyone?
Chilliwack, all of lower south-wet BC, really, has the same rugged beauty, and if not an ancient power ingrained in every rock and leaf, it certainly has raw power in plenty. It has the people, it has the food, and life. It has almost everything I need. But, that doesn't stop me from looking to the horizon, I'll admit it. But move back? In my dreams I can visit any time I wish, and its a hardship for none.
Wednesday, September 25, 2013
We all run into them - the people who feel they know more about our disease than we ourselves do; the people who lecture us. Sometimes they have something useful to offer, but unfortunately, most of the time they're just repeating "common wisdom."
The most common misconception about fibromyalgia is that it isn't a real condition; that its just something doctors label a bunch of symptoms when they've run out of things to call it. It's very much a real condition, it's not in our heads, and it does have a group of symptoms that identify it as such. Fibromyaglia is a neurological disease and has been shown to very much exist via brain imaging.
The problem, really, is that people think there is a cure for everything; if your doctor can't give you a pill, cut it out, or solve it with a few shots, then it must be in your head. It's not. Just because a disease hasn't been identified (and in this case, fibro has been), doesn't mean it is any less real.
Most commonly in people with fibro, their brain, spinal cord, and potentially the whole nervous system, processes pain differently than those that don't. People with fibro are more sensitive to touch, pressure and pain. No one's body is the same day in and day out, which is why some days are worse than others. You may be fighting off a cold, you may be tired due to lack of sleep, a whole host of things could make it worse and on the flip side, an interrupted night's sleep (I'm told!) makes things a whole lot better. Some days wearing clothes is like sandpaper, other days I could probably wear sandpaper. (Okay, maybe not.)
Another problem is that a lot of people if fibro people just change their diet, their problems would go away. Now, considering that a lot of fibro patients also have issues with their thyroid and should avoid soy, and dietary auto-immune issues like celiacs, its understandable how people could come to this conclusion. Thyroid issues and fibro could very well be related, I know when my thyroid is being grumpy, my fibro is too. However, cutting coke, or coffee, or corn, or whatever, out of one's diet isn't a miracle cure. Certain things help for certain people, but they only help, they don't remove the base problems. In my case, I avoid dairy and gluten and keep fats such as eggs or peanut butter to a minimum and I do as well as I can. Fibromyalgia is not an autoimmune disease, even if it is linked with them.
A lot of people seem to think fibro patients are just fishing for sympathy and are malingerers. The truth is, most fibro sufferers wait over three years before they start talking to a doctor about their problems, often working long past the point where they should have stopped. Its so ingrained to us that anyone who doesn't work is a lazy slob who is worse than the worst does not help. There is a point where one has to say "I need help," but the perceived judgment of friends, families and coworkers make it so very hard to get to that point. Typically, its not until everything completely unravels that a patient seeks help; and then you're stuck trying to rebuild from the bottom of a very deep hole instead of just from halfway up.
Fibro doesn't affect just middle-aged women, it affects men, women and even children. Yes, the larger percentage of sufferers seems to be women. Partially, that's because men don't tend to suffer from all "11 tender points" like women do. Children who suffer "growing pains" are often suffering from fibro or fibro related symptoms, but what pediatrician would think to look for it? Its not until recently the links have been made.
People with fibro aren't being weak, they aren't being malingerers, they aren't just trying to get a free ride. Most people will understand when you talk to them about it, are willing to hear your experiences and why the myths are myths, but if you get one of those right winners who say things like "Geez, the guy only lost a leg, he could get a job!" don't bother, just keep walking. They're too wrapped up in themselves and their own world view to constructively listen. They made up their minds long ago, and some battles just aren't worth fighting. Find your friends, hug your friends, and appreciate that not all of humanity are buttheads who'd rather believe a convenient lie than an inconvenient truth.
Wednesday, August 21, 2013
[Consumer Rant & Rave] Shaw Communications, Shaw Direct and their promises. (@ShawInfo @ShawDirect_News)
When CBC went digital a lot of households that depended on rabbit ears and CBC lost TV signal. The digital signal wasn't nearly as far reaching and Shaw Direct stepped up and said they'd ship anyone who was now out of range an SD satellite dish (the old Star dishes) and provide local programming. I didn't expect much more than CBC and possibly CTV and Global. It was actually several Canadian networks. After a few months, they offered me a deal for a whole shlock more channels, including the U.S. networks for $12/mo. Which, you have to admit, is a pretty freaking awesome deal. So I signed up before they could change their minds.
Last May, I got offered that as long as I'm with Shaw Direct, I could have Internet (High Speed 20), Personal Home Phone with 1 year of free long distance and a TV Package (Personal Television) for $55/mo. That was the deal. Internet, by itself is $50. I do believe that's the cheapest internet they have, which I personally think it is ridiculously expensive. So, all in all, it was a pretty awesome deal.
On my bill last month, it was said my bill may be going up to $66/mo. Now, I'd been being charged $59/mo since the get go, but I didn't feel it was worth butting heads with Shaw about $4/mo. However, for $11/mo more than what I was promised I decided I would poke the bear. It actually took several pokes of the bear for them to actual pay attention to what I was saying. When I started copy and pasting emails of what I was offered, they started to actually realize I had legitimate ground to question how their pants weren't actually on fire. In the end they offered the olive branch of they'd downgrade me to a lower internet speed and we could call it even.
Now, on the one hand - its still a pretty good deal all things considered. On the other, they haven't kept their word. I'm feeling a bit burned here. I'm not feeling quite upset enough to cancel my account and go over to Comwave, I did consider signing up with local phone service which had dial up for $9.95/mo. It would mean I'm not gaming any more, but I have been barely gaming now anyway. But I'm also not sure I want to flush this deal down the drain just to make a point.
I'm just very tired of feeling bent over and screwed by telecommunications companies in this country. They could at least buy me dinner first, I miss enough of them to pay them after all.
Saturday, August 10, 2013
The mental side of Fibromyalgia and Chronic Fatigue Syndrome is more frustrating than the physical. People can weigh and measure the physical. Most people have hurt themselves in one way or another and can empathize. They don't always understand the long term weight of chronic conditions, but they can see the cloud. But still if you say "I feel tired" they don't understand. If you say "I always feel tired." they really don't understand.
I don't get restful sleep. Ever. I am awake every twenty to forty minutes. Typically its a matter of get up, go to the bathroom, go back to bed and rinse repeat till I can either no longer sleep any longer or until I'm just too irritated with the whole process to keep doing it. I'll go through a string of days where I don't get more than three or four hours of interrupted sleep, and then I'll have a couple of days where all my body wants to do is be in bed. It never quite gets the memo that it won't ever get restful sleep.
I have constant physical and mental fatigue. The mental side effects are difficulty in focusing, trouble concentrating, decreased creativity, difficulty in problem solving, a skewed time sense, and severe memory issues.
I can tell you right now the memory and time sense issues are the biggest problem. If I do not write something down, I will not remember it. If I have an appointment on the 15th for something, I have to make a mental effort to tell myself over and over that it's happening, I have to write it down at least once, and even then I've been known to not remember. Often the only reason I know what day of the week it is because of my boyfriend's work schedule. I have only the vaguest awareness of the date on any given day. I can be told someone's name fifty times, but until I have seen it written, I will not remember it. I sometimes completely lose track of what year it is. I have also been known to forget my own middle name. Granted, its rare that I use my middle name, but still, you'd think it would be something I wouldn't forget!
The focus issues are what prevent me from getting much of anything done even when my pain is at an 'I can ignore it' level. Even if I've gotten a shot of torradol to deal with pain, I still have issues getting much of anything completed. I'll have it in my head, I'll have the motivation, but then I'll sit down to get something from brain to paper or keyboard and there's a misfire somewhere along the line. I might get it started, but I'll almost be guaranteed to not get it completed. Blog posts tends to be about the limit of what I can do in "one sitting." (which, in reality, is me coming back to it four or five times before I either wrap it up or leave it dangling.)
I have developed the attention span of a squirrel on crack. I am easily distracted, slow to get back to what I was doing and slower still to pick it up each time. I find it hard to concentrate on someone talking, after a while I just start to drift and have to yank myself back to the conversation at hand. It's not that I'm not interested, it's just its hard to concentrate for longer than a certain time.
I used to be a very creative girl. I would write pages and pages of fiction on a daily basis. I would read a book a day. I'm probably down to reading a book a week and if I get a short story finished every couple of weeks, I consider myself lucky. Its not that I don't have the ideas, even if they float around in their own little clouds, never really quite connecting, but getting them out, connecting the scenes, doing the 'beyond imagining' just isn't happening. I can't even remember, most days, the backbone setup for a story. I tend to use Freytag's analysis for story writing - five stages; exposition, rising action, climax, falling action, resolution/denouement. I can typically get through the exposition and sometimes start the rising action, but rarely get any further.
Problem solving is hard. You present me with a situation and give me five choices, I'll probably choose one and it will probably be the right choice. You present me with a situation and no real pre-formed answers, I tend to curl up in a little ball and take five times longer to choose an action or answer than it should take me. Its not so much problem avoidance as it just takes that long for my brain to sort through it all and spew out an answer.
When you take stress, mental interruptions, physical issues, isolation and a lack of sleep and social interaction you have pretty much the perfect recipe for clinical depression. I call my depression type 'anger without motivation.' I'm frustrated, I'm restless, I'm irritable, I'm easy to anger, slow to calm down, everything is a big deal and my brain just will run around screaming with it's proverbial hands waving in the air whenever anything goes wrong. My coping abilities have become next to nothing but trying to work up the enthusiasm to do anything is just too difficult.
I often feel alone, purposeless, restless, and like nothing will ever change or ever improve. I can sort of muddle along if I feel I'm making process towards an important goal (such as getting the right medications, visiting my boyfriend, whatever) but as soon as I feel I'm just sitting in a puddle and flailing, going nowhere, gaining no ground, I quickly lose hope and just start to sink. I don't want to go anywhere, I don't want to do anything, and I just want to sit in my bathtub (don't ask) and hug my knees and want the pain to go away. Of course, it doesn't go away and I get closer and closer to suicidal. I'm fairly lucky in that while I've considered suicide more than once, I just can't do that to the people I love. I may not feel like I can connect to them, or that they're an immediate part of my life, but I also know they'd be wrecked if I suddenly took myself off of this planet. Its still not fun to deal with in any shape or form.
Which leads to - if you can't say something supportive, don't say anything at all.
I, and most people I know with FMS, try to be upbeat. We try to be positive. We'll post cute pictures on Facebook, we'll tell silly stories, we'll joke around. Its very disheartening, however, when people chose to nitpick, or contradict, or argue. I have some friends who love to debate, to over-analyze, and to just dissect everything. Most days, I just filter it in one ear and out the other, but on trying days it gets too much and I just want them to shut up and go away. Its kind of hard to tell people to temporarily shut up and go away directly and remain a polite Canadian. Its also kind of hard to explain why their asking how much analysis is too much analysis is making me want to beat their head bloody when all you want to do is have people to be happy and positive and dance amongst the flowers. To make this even more fun, most days I'm perfectly fine with the brattiness, the refusal to suspend belief and enjoy and general cynicism so people have no way to know WHEN I'll suddenly growl and say "just let it go already."
I've also learned that if I want to post my thoughts on anything negative or grumpy or controversial not to do it on Facebook. I'm not sure what it is about Facebook that makes people turn into debate champions and the royal cream of nitpickers, but I now keep it purely to Blogger and Twitter. Its hard to lose that wide base of support due to the nay sayers, but one does what one can.
However, when people say things like "Well, maybe if you get a job" or "Have you tried yoga?" or anything else that's just bloody OBVIOUS, that we've all heard five thousand times before, its a kick to the kidneys. Of course we've tried Yoga, of course we want to get jobs, of course we want to live lives as normal as possible - that's the thing, we already are. We're already scouring the net looking for answers, we're networking with each other, we're talking, we're griping, we're fairly up on things. "Have you heard about Hatha Yoga?" is a lot more open and less judgemental than a general "Have you tried yoga?" All we hear after the fortieth time we hear a comment like "Have you tried yoga?" is "You're an idiot who is obviously happy wallowing and not improving or changing." Sure, you didn't mean it that way. You probably even feel its a stretch to have it interpreted that way, but imagine if you hear the same thing over and over. It becomes a criticization. We're open to suggestions, but keep in mind, anyone who has had FMS/CFS for more than a year has probably heard the most common ones before. Try to coach any suggestions in as open ended terminology as possible!
When in doubt, "That sucks" or "HUG!" or a simple indication of empathy works so very well. It says "I'm thinking of you, I'm hear to listen, I'm not judging you." Short and sweet.
Being told to "get a real job" is a personal favourite. Apparently people seem to think that it's fun for a grown adult to always have to be begging for help. To put one's pride down, when often pride's all you got, and say "I need help." You need help to pay for clothes, or food, or transport. This is on top of the help you already have to ask for just to get daily life things accomplished. I can't speak for all FMS/CFS sufferers, but I receive $944 a month on disability and $40 of that is purely because I'm celiac and get a dietary allotment. $944 isn't a whole heck of a lot of money.. and if I were married, I would be forever living off the generosity of my spouse and feeling like an anchor around their neck. Its probably the most insulting and hurtful comment I get, and of course, the wonderful judgemental people never actually say it to my face, they say it behind my back.
Here's a life lesson - if you can't say it to someone's face, or at least want the message to get filtered through to them, don't say it and perhaps wonder why you even think it. Look at why you feel that way, look at why your friend is friends with them, and then maybe think about it. It's real easy to say "get a real job" and make a casual judgement, it's not so easy to ever get them to respect or like you again. If high school taught us nothing else, its that rumour-mongering and drama causing always gets around.
And if you can hold down a job when you have trouble remembering your own name some days, let me know your secret and what job it is you do.
Monday, August 5, 2013
I'm going to refer to Fibromyalgia pain as FMS for brevity. Chronic Fatigue Syndrome (sometimes categorized separately, sometimes included in FMS) is abbreviated to CFS.
The part you'll hear the most about when it comes to Fibro is the pain. The non-stop, unending, will sapping, stress causing, pain. Have you ever had a three day migraine? Imagine that in every single part of your body. Imagine your joints are all screaming at you with arthritis, Imagine your hair brushing against your face from a fan hurting you, and now imagine you never know what part of you will hurt, how much it'll hurt and when. It's not fun. This is not something some dreamed up to get out of holding a real job, this is a real, serious, deliberating condition. Its never a matter of being pain free, its a matter of pain level.
Most fibro sufferers start their day with self-evaluation. The start time of their day varies since fibro is normally hand in hand with chronic fatigue syndrome; you sleep how and when you can and its never enough. When you wake up you start the evaluation of 'What is my body doing? How is it feeling? What can I manage today?" and then you get to go look at your calender and probably call and cancel tentative plans in favour of doing something like grocery shopping to put food in your cupboards.
Some days its an accomplishment to make coffee. Some days its too hard to get dressed; hell, some days going to the bathroom is a lesson in torture. You don't realize how many muscles and joints you use for such simple acts until you have back or nerve issues. Some days I am curled up on the couch, trying to work up the enthusiasm to put on a brave face and stiff upper lip and post cute pictures of cute animals to Facebook. Social contact, even if its electronic DOES help; looking at cute things and posting happy thoughts DOES help. It helps mentally, it doesn't help one iota with the pain or stress. when you have a broken leg, wiggling your toes hurts like hell, but you can probably still joke about how you wanted a tie-dye cast before you went to the Fleetwood Mac reunion concert.
As one friend said, "Don't confuse happy with healthy." I can assure you, after fourteen years of this hell, I choose my victories when and where I can. A lot of the time I'll put on the brave face because I don't want to burden other people with my suffering; their life has enough problems, they don't need me to be a Debbie Downer on top of them. Of course, it also occasionally get splattered all across my Facebook wall when I need to vent my spleen. Its a bit of a roller coaster.
Stress does wonderful things to the body and being in pain every day of your life and knowing you'll be in pain for the foreseeable future is rather stressful. FMS patients have digestive issues. They also will have trouble sleeping as much from stress and symptoms as pain itself. Sufferers get tension and/or migraine headaches. (Almost all FMS patients get migraines.) I, like many other FMS sufferers, am also sensitive to bright lights, loud noises, have developed food intolerances, touch and heat makes me physically ill. These may be from stress, autoimmune issues (as FMS seems to come hand in hand with autoimmune diseases), or third party causes entirely.
I also have issues with muscle control, a lack of energy, muscle spasms and general weakness. If I stay in one position for more than fifteen minutes I will be very stiff and its rather painful to straighten up or move. Standing is quite painful quickly, walking can be as difficult some days.
And if all that's not enough to be a barrier to employment, there is no real predictable pattern to all of the above. It all fluctuates. I have good days and bad days. I have days where I'm horrible in the morning and fine in the afternoon. I have days where the opposite is true. I have a week where you're absolutely fine and then three weeks when you aren't. I have days where I'm not safe to drive because I'm in too much to concentrate. I have days where I couldn't tell you what I just said because I'm in "fibro fog." I've had to cancel doctors appointments because I'm in no condition to get there or sit in a chair.
I also have some sort of issue in my lower back at the L5-S1 juncture. Some neurologists and neurosurgeons have seen the issue, some haven't. It seems to be a come and go thing. My personal theory is that it's caused by a spinal leak I gained during back surgery. I can sometimes feel a bump in my lower back under the surgery scar, some days I can't. This issue also gives me all the fun associated with back pain and weakens my left leg significantly. I also have issues with my right leg that are not symmetrical to the left
I have numb spots on my legs and buttocks. I can't feel the tops of my feet and my toes tend to feel like there's a 9V battery hooked up to them. Every so often my body likes to spice it up by sending a shooting pain down the main nerve from back of knee to the base of my toes, but mostly its just numb. I can drop things on my feet and not know it, I walk into things, I bang body parts and just not notice. I am constantly looking at my legs and wonder how I gained a bruise or bump.
Heat makes me physically ill. Whether that's a side effect of thyroid or just my system being hyper-sensitive, I don't know. What I do know is that I can tell you almost exactly when it's hit 28C because I'm trying not to vomit. (And if you think standing and sitting when you have back problems is fun, imagine vomiting while you have back issues.)
So, I can't commute to a job, I can't sit to work at a job for more than twenty minutes hour or so on my "average" days, I can't walk around at the job, and some days I can't even stand the feeling of clothes on my skin - most work environments frown on nudity. Working outside the home is impossible, so my next post will be the why's of working at home hasn't been a brilliant idea either.
It was filtered back to me recently that a friend of a friend said that I should (in essence) get off Facebook and get a real job. I guess she never noticed I would only spend 5 - 10 minutes at a go on Facebook over the course of the day, with 20 - 45 minute gaps in between, that such patterns don't really equip you to hold down a "real job." Its probably also not very noticeable how little sleep I get so that posting happens over 18 - 20 hours. When you're busy with being a full time employee, a full time wife, a full time parents AND trying to get a little sleep and fun in on the side, you probably don't notice the details of other people's lives; you don't really see their paradigm
Its not the first time I've received this attitude, it probably won't be the last. So, for those that will take the time to read, I present to you my experiences with chronic fatigue, pain and the fun in-between. By the by, I'm not quite sure what qualifies as a real job, but I'll assume it's not, in some's opinion, being a giant leech on society to the tune of $904/mo.
This'll be an 6 part series.
1) The physical experience of FMS/CFS
2) The mental experience of FMS/CFS
3) Myths and Misconceptions.
4) The medical system and the incurable.
5) The financial side of things.
6) Summation/Final Thoughts.
FMS = Fibromygalia Syndrome
CFS = Chronic Fatigue Syndrome
Just as a note - each blog post can take up to three days for me to write, so there may be some silent bumps. I tend to write blog posts, or short story blurbs, or whatever, in twenty-minute allotments. Its also why I tend not to finish the story blurbs, its simply because by the time I'm 3/4 of the way through them I've lost my connection to them. "Fibro Fog" is just an extra fun fact. (See second 2 .. when its written)
Wednesday, July 31, 2013
Somewhere in the last five years or so, I've noticed that if I am nice to a person, particularly a geek male, it seems they will think that I am hitting on them or expressing an interest in them. Not all geek males by a long shot, but its a large enough percentage that I've pretty much stopped flirting with anyone.
In short : I am happily, completely, and madly in love with my boyfriend.
I have no interest in trading him in. I have no interest in exchanging him. I have no interest in any other being on this planet sexually. Okay, maybe John Barrowman, but he doesn't want me so that's immaterial. No, my boyfriend isn't perfect.. but here's a major revelation; neither am I. I am selfish, demanding and an attention whore. I don't want money, I don't want things, I want TIME and I want ATTENTION. Do you know how freaking hard it is to shop for someone who doesn't want THINGS? I don't per say, but I get told it's seriously NOT FUN.
I would rather twenty minutes a day every day than twelve hours on one day. I would rather ten minutes than ten dollars. Not that you can pry my Stitch plushies out of even my cold, dead, hands.. Mostly because that shows he was thinking of me. But, physical gifts that mean something are far and few between.
To get back on topic, just because I drive out to have coffee with you at 0330 because your marriage failed does not mean I want to have sex with you. Just because I spent five hours listening to you talk about problems and being a sounding board when I had no real advice to give you does not mean I want to have sex with you. Just because I did any number of genuine nice person things does not mean I want to have sex with you. Just because I listened to you brag about your sexual prowess for hours, does not mean I want to experience said sexual prowess myself. I did those things because that's what friends do.
It didn't matter than you were male or female. It didn't matter that you are someone I've never met in person. It didn't matter that you just spent the last three days kicking my ass from one end of the battlefront to the other and back .. wait, that one might.. I take my PvP pretty seriously. Regardless, its because I'm a nice person.
I don't have a lot of close friends, people I confide every thought to. Actually, I don't have any of those. Only my boyfriend gets the unfiltered me, and he's the first ever. I don't have much of a filter it has two modes ; on or off. I am either willing to talk about it with most or talk about it with no one, excluding him. The fact that I'm willing to tell you the generals about my frustrating day just means you were one of the first friends to ask, it doesn't mean you're my closest confidant and I'm wanting to change you from friend to naked mambo partner.
I have a lot of people I consider 'general friends' .. the people I'm happy to chat with, do favours for (non-sexual :P ) and basically hang out with. If those people don't ever really return that, then they tend to get shuffled off for new people. If you're one of the new people - it's because you seem to be a genuine nifty person. If you're one of the old people - it's because you are a genuine nifty person. No rocket science is hidden here. If you start hitting on beyond playful banter, you might see me edge away. I will drop polite hints of 'not interested' or 'Boy, I love my boyfriend, he's so awesome.' or finally just say 'You know I don't want to have sex with you right?" The last tends to ruin friendships, but there comes a point where the attention has just gotten creepy and stalker feeling.
I don't think every man or woman wants to have sex with me. I don't even think one percent of the people I've met who could biologically be sexually interested in me are. This is addressed purely to those who think "Hey, she's kinda hot and I think she like-likes me," .. the answer is no, I' really don't. I'm just a nice person and you're someone that is either a friend or I feel could use a friend.
Disclaimer : If you're my boyfriend. I do totally like-like you and think you're hot and that you should be here right now. Everyone else -- no.
Thursday, July 25, 2013
Tuesday, July 23, 2013
@Shadowydreamer If the athletes want to give up their dream to protest Russia, that's their choice. The COC shouldn't ruin their dream.
— David Appleby (@Maniac1655) July 23, 2013
And he's (irritatingly) right. While our government CAN (and I still think SHOULD) say "We do not support Russia and their latest actions" and take political stances, it IS up to the individuals to choose.
I started to weight that comment, with my obvious bias, and sighed at myself. Its very easy for this armchair athlete to dictate what should and shouldn't be done by others. My biggest commitment to fitness or physical competition is walking for exercise. I try to maintain a 15 minute per mile speed and try to keep to a point where my leg doesn't collapse and I land on my face. (I have a hard limit of just over 5 miles. My soft limit is entirely variable on how lazy I am.) This is not even a drop in the well compared to what Olympic athletes go through and I know it.
Its so very easy for me, a hetroflexible, white, disabled, woman to say, "Give up your dream in the name of rights and freedoms of others in a gesture that may or may not accomplish anything significant." I can't even begin to imagine the heartbreak involved in making that decision. "Do I do this for my teammates who are gay? Do I do this because I am gay? Would getting arrested on the world's stage make a bigger statement than my saying I'm not going? Would.." So many things to consider that have no answers when they're considering throwing asside everything they've worked, dreamed, sacrificed and lived their lives for
But I still think our government should decry Russia like a tonne of bricks. If it were racial, you know they would be.
Monday, July 22, 2013
I didn't leave Scotia unhappy with the staff or their practices. The simple reason I left Scotia was their fees. I was paying $13/mo to access my money. I found that flipping ridiculous. So when Coast Capital starting advertising their "Fee free chequeing!" I was cynical but decided to sign my butt up. Here's a quick point by point review. (Because it's hot and I'm tired and lazy.)
- It is really IS fee free. The ONLY fee I have received from CCS is when I rubberised a payment. (It bounced.) And my NSF was $25. Scotia's was $35. RBC's, and this was years ago, was $40.
Saturday, July 6, 2013
Friday, July 5, 2013
There were two pedestrians, one heading west and one heading east. The one heading east was an older lady who wasn't walking very quickly, so both pedestrians met on the far side of the road. As in, not the side I was turning onto. I had a big box van behind me driving up my tail pipe as if wondering why I hadn't just mowed down the pedestrian heading west and turned left already. With both ladies on the western side of the meridian, I turned left. This resulted in the older lady, who had reached the middle after I was already several car lengths down Vedder to gesture rudely at me and yell after my car. I pulled into a parking lot, Scottish temper saying "Chase her down and tell her what for!" but managed to calm and tell myself 'So not worth it.'
Fate then planted this lady to have been heading into the building beside the parking lot and she stopped to talk to the guys in the black minivan that was parked at the entrance. This is where I should have shut up, crouched down and just let things go. Unfortunately, I escalated. I said "Hey, are you the lady who was yelling at me at the cross-walk?" To which she said yes and started to lecture me. I said "Ma'am, I was in the right. You were not in my lane or close to it, I was not doing anything illegal, nor were you in any danger." I should have said my side of the street rather than lane. She proceeded to yell at me about how her husband was hit at Vedder and Watson/Promontory which really didn't surprise me, you take your life in your hands crossing there due to the dump trucks that don't stop at the red light and turn into the left lane instead of the right. I tried again to be forcefully polite, she yelled some more I went back to my car.
Now, this is the point I should really have Just Let It Go! She decided to talk loudly, maybe its the only mode she has, about what an idiot I am, and how bad drivers like me are the reason so many pedestrians die every year, and yada yada. I may have gotten a little short tempered and got out of my vehicle and slammed the door. I was mad. I let bad judgement and temper get the better of me. I should have sat in my car, listened to Pantera loudly until I calmed down and driven off. I should not have escalated.
Escalation really consisted of her grandson telling me politely that he'd just done his L and I was wrong (I wasn't) and his grandmother yelling at me, talking over me, and then saying she was calling the cops. I said okay and asked if she wanted my driver's license? She said no, she had my license plate and that ties me to the incident. I said, not really, it ties me to the *car* and if I leave I can claim it wasn't me driving, she should really take my BCDL number. (Okay, I was riling her up at this point, and I really should have resisted temptation) I corrected her when she reported my license plate wrong. She missed the irony there. Anyway, I went back to my car, turned it on and got ready to leave for a third time. She yells something like "Yeah leave, the cops are on their way!" so I said "Oh, okay." and reversed back into a parking space to wait. I cleaned up my car a little, I listened to some music, I waited.
It was actually a surprisingly quick response of about two minutes. The Mountie pulled in, listened to her rant about my bad driving and didn't even look my way (Probably for the best for her since I know him and he knows and he likes me). He then backed out, hit his siren a couple times and did a reversing left turn to continue on his way to wherever he had been going. The grandson quickly got in the van and he and the driver left while his grandmother didn't quite flee into the Yoga place. (She needs the meditation. I probably do too!)
Now, I'm pretty sure the RCMP's attitude was"Why are you bothering me with this $#!^ ?" and politely explained to her that I was actually technically in the right which is why not one of them came across to tell me how wrong I was or lecture me further. But, I should have let it go. SHE should have let it go. We both got our Irish up (as the saying goes) and had a stupid argument about a stupid non-event. She was upset about her husband being hit and probably extra sensitive, I was upset about other things and and let that colour things not to mention letting the guy behind me drive my car.
Its so easy to see how road rage events happen! I think I'm going to give my rear view mirror mouse a sign that says "Calm!" It's kinda scary how upset I was. My hands were shaking for a good ten minutes after! Definitely time to have a chat with the inner me about calm and well being. It didn't matter if I was being polite, I shouldn't have got involved in the first place.
I will confess, however, I'm enough of a petty wench that when I got home and double checked the motor vehicle act to give a tongue out and "NYAH!" in the general direction of the yoga place. But the mantra for today's "inner focus" session shall be "Don't get out of the car! Let it go!"
Many a year ago when the grass was green and the mountains had snow, I hung out at SFU and pretended I was far more educated, and financially well off, than I was. Part of this consisted of mooching coffee off a very long suffering Cher and hanging out in the CompSci common room.
One day a discussion about the Womyn's Centre came about and how absolutely over the top it was. None of us was against females having their own retreat. We weren't even against rather, ah, strong-minded, anti-male, females having their own clubhouse. What got us were the rules that applied outside the area. Men weren't allowed to approach females entering or leaving the Womyn's Centre. Men weren't allowed to phone the Womyn's Centre. If a male needed to contact a female within, he was to slip a note under the door. Oh, I'm sure there were more rules, but those are the ones I remember.
So it was protested. Why isn't there a man's centre? Where did men go to escape women? In which one very wise man pointed out that few of them WANTED to escape women and the Womyn's Centre was to the male advantage even if it wasn't created that way. You see, the men had the pub. The pub had beer and it had women who wanted to be around men. It had music. It had women who wanted to be around men. (A point so important, the male felt it had to be mentioned twice.) They were quite happy with their all inclusive clubhouse. The male then smiled and said "I like to think of myself as a feminist." and then proceeded to teach me the PROPER meaning of the word.
It's not about women being more important than men. It's about EVERYONE having the same rights and opportunities and the same choices. If a woman wants to stay home and be a house wife, she should have the choice. If a woman wants to become a diesel mechanic, she should have the choice. If a man wants to become a nurse or a secretary, he should be able. If a black person wants to sit at the front of the bus, or (gasp) drive the bus, they should be able to. So on and so forth. He said the Womyn's Centre is doing no real harm to anyone outside its doors and while they wished they could change the hate on the inside, it's probably better to know where hate is in one concentration that diffused every which way. Basically, the philosophy was, why get all worked up and froth when you could quietly just BE and show them the BEING and lead by example.
I have to disagree with the last, somewhat. I'm not saying go around and pick every fight you can - you do have to pick your battles, but sometimes you do have to battle. But other than that, there spoke a wise man. With a truly Canadian appreciation for pubs and beer.
Wednesday, July 3, 2013
Religion and science are not separate entities. You can believe in a greater power without sacrificing knowledge, curiosity, common sense, and scholarship. Believing in a deity, deities, spiritual entities or what have you, does not make you a zealot, bigoted, or an idiot. It does not make you uneducated; it just makes you a believer in something greater than yourself.
Human have a long and wonderful history of good things religion does. But God forbid (ha ha) that we mention THOSE things. Why, that would be all terribly boring, wouldn't it? Let's mention wars, since the only thing ever that starts wars is religions. Nope, it's never greed or politically based. (If you're going to try to claim 'communism' as an organized religion, you'll need to visit a farm and get a sufficient amount of bull by-product. for just one example.) Hate is only driven by religion too, of course. It's never a quest for power by suppressing others or a distraction to keep power, or just the way of bigoted people.
Sure, it's easier to say "My god says that people who have wives who pluck chickens in the morning will be poisoned by his holiness," than it is "If you prepare the chicken in the morning and leave it without cooking or refrigeration until the afternoon you will get food poisoned" when you haven't even discovered the microscope yet, but that doesn't mean the deity (fictional, or not) is necessarily wrong. It's easy to say "My God says if you hop on one foot for an hour you will be a true follower and anyone who doesn't should be shot," because you want an excuse to get rid of the disabled. But, again, that would be the excuse. It's not the religion's fault.
Scientists aren't always honest. There are countless cases of fraud in the history of our people (Piltdown Man comes to mind.) Science is not always correct even in this modern day. (Google Archaeoraptor) Science doesn't mean there is no unifying force of humanity.
The hate, the nastiness, the close-minded asshattery, that's all humanity. You let them use excuses, they will. They'll do it in the name of conservatives, religion, science (I do recall something about a 'master race' that wasn't religious) or whatever they can get away with. So stop trying to blind yourself and blame it all on religion. Don't spread the falseness of 'well, the history of religion is all blood.' Tell that to a Buddhist.
Look at the guiding tenants of almost any religion such as the Ten Commandments. Eight out of ten right off the bat seems like pretty good ways to live your life. Morality can sure exist without religion, but religion doesn't hurt morality. How about compassion? I hear lots from people saying 'I don't need God to help my neighbour, I don't need a government to steal my money to do charity'.. but its real interesting come push to shove how many of them don't get off their thumbs. Even if you're not religious, you'll have to notice a lot of churches organize a lot of charitable events. Sure, organized charity can happen outside of religion, but that doesn't lessen the contribution of the religious.. and that's a fairly modern swing in the last forty years.
Let's talk education. Religion, pfft, they suppress knowledge, right? How many universities and colleges in North America alone were founded by a religion? In institutions over a hundred years old, ninety-two percent were. Harvard and Yale were both established by Christianity, for example.
You can have both in your life. So instead of spreading the negativity by posting with generalities of 'Religion bad, science good!' how about broadening your own mind instead of your attempt to supposedly broaden others? I'm not sure how your hate mongering is any different from the preaching you dislike. II don't care who or what's name you spread negativity in, I care you're spreading negativity. I don't care who or what's name you spread positivity in, I care you're spreading positivity. How about instead of focusing on the who or what, you focus on the effect?
Monday, July 1, 2013
I won't try and claim Canada is perfect, that's laughable! Its a creation of humans for humans; it can't be perfect! You can't get an apartment building of fifty-six people to agree on everything, to get thirty-five million to agree on anything would take a deity granted miracle.
I feel safe making that statement because if one wasn't happy being a Canadian, wasn't happy living in Canada, then one would leave. I encourage this. I don't mean it in a 'love thy country or get out!' kind of way, I mean you should live where you can be happiest. If there's truly nowhere on this wild, wonderful, varied planet where you can be happy, nowhere that you can appreciate even if only for twenty-four hours, then maybe it's time to review yourself and your priorities.
Our world, our nation, our leaders, our citizens; none of them are perfect. Canada, however, is pretty damn awesome and I'm a very proud Canadian.
Sunday, June 30, 2013
I was going to write a serious post here about the awesomeness that is the "Great White North" but I figure I'll save that for another day. Canada Day is about having fun in the name of our nation. BBQs and fireworks, eh?
Canadians are Great!
1) We are naturally conversational. We don't say "Nice weather" and pretty much kill a conversation before it started, we say "Nice weather, eh?" so you can rebutt with "It's 33C, it's 85% humid, and I can't justify spending $800 to have AC for three weeks a year!" without seeming a bitter bug or rude. Okay, mostly without seeming rude.
2) We are [ridiculously] polite. The way to tell the difference between a Canadian and American is a Canadian will apologize if a glass door is opened into them, the American is the one holding the door. (I love my American cousins! Honest! .. please put down the weaponry..)
3) We are friendly. Come on over and watch the game! Come on over and have some BBQ! The fact that these two things may be said together, when there's two feet of snow on the ground, is perfectly natural.
4) We had the world's prettiest
5) Give a Canadian a choice between shaking the hand of our Prime Minister or driving a Zamboni, and we'll choose the Zamboni every time! The leader of our country is just another person, but a Zamboni? It's a ZAMBONI!
6) We invented a bunch of stuff, took part in inventing a bunch more, and will always claim the greatness like we did it all ourself. ("The CANADIAN arm, dude! Couldn't have built the ISS without it!" .. Lets not mention the space shuttle required to get it up there..)
7) We spell the English language the way the English intended. ;)
8) We appreciate tongue in cheek humour.
9) We may not all speak and/or read French, but every younger sibling in this great nation knows the names of cereal in French and English.
10) Log Driver's Waltz.
Even on topic. :)