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

[Personal Stuff] Fibromyalgia and Chronic Fatigue Syndrome, the mental side of things.

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

[Personal Stuff] Fibromyalgia and Chronic Fatigue Syndrome, the physical side of things.

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.

[Personal Stuff] An overview of why I don't "get a real job"

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)