I don't have nearly as powerful or meaningful a story behind Kaida. Actually, it's pretty much just silly and geeky. Imagine if you will a character creation screen. The race, class and look have all been chosen. All that's left is the name.
The process went something like this:
Input character name: ____________
Kaelle
That name is unavailable.
Kaede
"Wait, no, that's Kikyo's sister on InuYasha."
"I do like it though. Let's play with some variations."
Kaeden
"Hmm. I like it, but it's a bit too masculine for this character."
Kaeda
"Ehn."
Kayda
"UGH no."
Kaida
"...."
"...."
"...I like this version!"
Congratulations! Your character has been created.
"Yay!"
Proceed to play game, make connections with people, start using name as common handle in forum/chats/TeamSpeak. Use name in other games. Become known as 'Kaida' to many people; have them use that name more naturally than my real one when we meet in real life, because that's what they've been calling me online for months or years. Begin answering to that name just as readily as my real name.
Discover later that baby name sites like to claim that 'Kaida' is a Japanese girl's name meaning 'little dragon.' Facepalm a lot, especially when research turns up absolutely zero evidence to support this claim.
Keep the name anyway, because I like it. So there, nyah nyah.
Tuesday, 29 July 2014
Friday, 25 July 2014
The Origin of a Name
The first house I can remember living in with my mom was an old farm house at the top of a ridge. There was quite a bit I loved about that place and the surrounding land. But my absolute favourite part about living there was watching storms roll in. It gave my mother fits, because I would pop the screen out of my bedroom window and crawl out onto the roof of the back porch; she was convinced I was going to fall through and break my neck.
It was the perfect spot for storm watching, though. I could see for miles over the surrounding hills, so I could watch the storms for quite a goodly while before they got too close. It was breath taking, awe inspiring and absolutely beautiful. Gigantic dark, roiling thunderheads slowly devouring the sky and shadowing the land, the horizon blurred by torrential rain and best of all, the lightning lashing out in searing flashes, creating incredible images of shadow and light. Far from being frightened by this fierce display of nature, I was always filled with excited energy. It was invigorating.
From the first moment I’d feel that shift in the air that warned of a change in weather, I’d also feel the beginnings of a happy buzz. I’d have no choice but to run, leap and dance, whooping with delight, just to vent the energy that began to fill me. And when the wind would bring that first cool whiff of rain and ozone, I’d stop and breathe deep; as deep as I possibly could, just at the edge of the point where inhaling any further would begin to hurt, and then I’d hold that breath for as long as I could. I’d let it out with a whoosh, with a holler of pure joy, and begin to race around again.
It was only a healthy respect for the very real danger posed by the lightning that would send me back indoors, albeit reluctantly and with much disappointment. I always wanted to stay out in the wind and rain, reveling in the sheer power of nature surrounding me. Every peal of thunder only heightened my delight, and even more than simply being outside, I wanted to be in the storm. I wanted to fly through the clouds, dance with the lightning and bathe in the rain.
I’ve never lost that joy, or that desire. Nor does it always have to be huge spectacular storms that awaken it. A simple rain shower still fills me with the urge to run (or stay) out and dance in it.
Then there’s the time immediately after a storm or shower. One might think that, given how much I enjoy the storms themselves, that having them dissipate/pass on would be a disappointment. But this is far from the case. It’s a calmer sort of energy, the kind that makes me want to slow down and just breathe, to take in the scents of the surrounding land and reaffirm my connections with the Earth and the people I love. I become grounded once more, centred, but revitalised.
For me, the entire experience is very much a spiritual one. It may seem like chaos, but all the elements are together in their own harmony, intertwined. Chaos and order, destruction and creation, death and life.
This is where I get the name Stormshadow from. For some, it may seem to have ominous connotations; indicate a brooding darkness, anger and negativity. This couldn’t be further from the truth. For me, the name is the best way I can distill into simple words a celebration of and joy in life. It feels right; feels like me.
It was the perfect spot for storm watching, though. I could see for miles over the surrounding hills, so I could watch the storms for quite a goodly while before they got too close. It was breath taking, awe inspiring and absolutely beautiful. Gigantic dark, roiling thunderheads slowly devouring the sky and shadowing the land, the horizon blurred by torrential rain and best of all, the lightning lashing out in searing flashes, creating incredible images of shadow and light. Far from being frightened by this fierce display of nature, I was always filled with excited energy. It was invigorating.
From the first moment I’d feel that shift in the air that warned of a change in weather, I’d also feel the beginnings of a happy buzz. I’d have no choice but to run, leap and dance, whooping with delight, just to vent the energy that began to fill me. And when the wind would bring that first cool whiff of rain and ozone, I’d stop and breathe deep; as deep as I possibly could, just at the edge of the point where inhaling any further would begin to hurt, and then I’d hold that breath for as long as I could. I’d let it out with a whoosh, with a holler of pure joy, and begin to race around again.
It was only a healthy respect for the very real danger posed by the lightning that would send me back indoors, albeit reluctantly and with much disappointment. I always wanted to stay out in the wind and rain, reveling in the sheer power of nature surrounding me. Every peal of thunder only heightened my delight, and even more than simply being outside, I wanted to be in the storm. I wanted to fly through the clouds, dance with the lightning and bathe in the rain.
I’ve never lost that joy, or that desire. Nor does it always have to be huge spectacular storms that awaken it. A simple rain shower still fills me with the urge to run (or stay) out and dance in it.
Then there’s the time immediately after a storm or shower. One might think that, given how much I enjoy the storms themselves, that having them dissipate/pass on would be a disappointment. But this is far from the case. It’s a calmer sort of energy, the kind that makes me want to slow down and just breathe, to take in the scents of the surrounding land and reaffirm my connections with the Earth and the people I love. I become grounded once more, centred, but revitalised.
For me, the entire experience is very much a spiritual one. It may seem like chaos, but all the elements are together in their own harmony, intertwined. Chaos and order, destruction and creation, death and life.
This is where I get the name Stormshadow from. For some, it may seem to have ominous connotations; indicate a brooding darkness, anger and negativity. This couldn’t be further from the truth. For me, the name is the best way I can distill into simple words a celebration of and joy in life. It feels right; feels like me.
Saturday, 19 July 2014
Medicine is Medicine
When I was growing up, my mom got a lot of flak from her social group for taking me to the doctor, giving me cough syrup, using medicated ear drops, and other such ‘unnatural’ methods for treating illness and infection. This apparently meant she wasn’t a true ‘Earth Mother’ (their term, capital letters required) and was to be looked down upon for ‘giving in to The Man’ or some such bullshit. She actually lost friends when she followed a doctor’s advice to have me taken in for a tonsillectomy.
Never mind that doing so saved my life. As soon as the goldenrod would start to bloom my allergies would kick in extremely bad, and my tonsils would swell to the point where I struggled to breathe. Let your child suffocate or have them undergo a procedure that eliminates the risk? Seems like a no-brainer, right?
Well, there were those who believed she just didn’t take the time to find the right ‘natural’ remedy, or that she didn’t have enough faith in the Earth Our Mother to look out for one of Her children. (Sound familiar? Thought so.)
Now, don’t get me wrong. My mother is all for holistic medicine and doesn’t discount the benefits of spiritual Healing or herbal remedies. I mean, she herself is a spiritual Healer. But she doesn’t believe that these methods can’t be used in harmony with modern ‘technological, scientific medicine.’ Science, and advancement through science, is natural. And this brings me to one of the best things my mother taught me (out of many):
Skepticism is healthy. By questioning the supposed ‘truth’ of a claim, we investigate and learn. Or at least, we should. Simply dismissing something out of hand because you’re skeptical can be just as detrimental as blindly believing in everything you’re told by a so-called ‘expert.’
My mom is an intelligent woman; she uses that intelligence to educate herself and taught me to do the same. Whether the advice was coming from a certified medical professional or an herb woman whose knowledge was passed down from generations of oral tradition, my mother never took anything at face value. She found other sources to consult, did her research, sought to understand why something worked... or discovered when it was just snake oil and best avoided.
This has served me well over the years, and especially now that I have Fibromyalgia.
There are a lot of organic methods out there for boosting energy, managing fatigue and pain, promoting joint, muscle and organ health, and so on. Many of which can be applied to management of Fibromyalgia symptoms, and which I use. However sometimes the organic methods just aren’t enough to quite cut it. (And if that prompts you to think “Well, she just isn’t doing enough/trying hard enough/doing it right.” you can just bugger off right now. We all of us are different and not all methods will work the same, or as well, or at all, for everyone. Here ends the mini-rant.)
I take prescription pain medication, muscle relaxants, and an SSRI. The SSRI is daily, to help boost my energy levels. Before I started using it, even with dietary changes and organic energy boosters, I was flat out exhausted most of the time. I pretty much turned into a koala, such were my periods of sleep vs. wakefulness. Being prescribed the SSRI was one of the best things that happened. No, it is not a magic cure-all for my fatigue, but my episodes of ‘koala-ness’ are now infrequent, rather than every single day.
The pain meds and muscle relaxants I take ‘as needed.’ Which means that some days, when my pain levels are low enough to be tolerable, I don’t take the prescription pills at all. And the muscle relaxants I take even more rarely, as they are largely a preventative measure when I get warning twinges from my back.
This is a balance that works for me. I know there are those out there with Fibromyalgia who don’t use prescription medications and they’ve found ways to make that work. Good for them! But such is not for me.
I guess where I’m going with all of this is my own little counter against both the “All natural all the time!” and “Modern medicine is the only way!” arguments/attitudes I’ve seen. These two things need not be mutually exclusive; they are, at least to my mind, two sides of the same coin. Both have much in their favour, and both also have their share of problems.
Recognise the benefits, be aware of the dangers, educate yourself. Sound advice. Thanks, Mom.
Never mind that doing so saved my life. As soon as the goldenrod would start to bloom my allergies would kick in extremely bad, and my tonsils would swell to the point where I struggled to breathe. Let your child suffocate or have them undergo a procedure that eliminates the risk? Seems like a no-brainer, right?
Well, there were those who believed she just didn’t take the time to find the right ‘natural’ remedy, or that she didn’t have enough faith in the Earth Our Mother to look out for one of Her children. (Sound familiar? Thought so.)
Now, don’t get me wrong. My mother is all for holistic medicine and doesn’t discount the benefits of spiritual Healing or herbal remedies. I mean, she herself is a spiritual Healer. But she doesn’t believe that these methods can’t be used in harmony with modern ‘technological, scientific medicine.’ Science, and advancement through science, is natural. And this brings me to one of the best things my mother taught me (out of many):
Skepticism is healthy. By questioning the supposed ‘truth’ of a claim, we investigate and learn. Or at least, we should. Simply dismissing something out of hand because you’re skeptical can be just as detrimental as blindly believing in everything you’re told by a so-called ‘expert.’
My mom is an intelligent woman; she uses that intelligence to educate herself and taught me to do the same. Whether the advice was coming from a certified medical professional or an herb woman whose knowledge was passed down from generations of oral tradition, my mother never took anything at face value. She found other sources to consult, did her research, sought to understand why something worked... or discovered when it was just snake oil and best avoided.
This has served me well over the years, and especially now that I have Fibromyalgia.
There are a lot of organic methods out there for boosting energy, managing fatigue and pain, promoting joint, muscle and organ health, and so on. Many of which can be applied to management of Fibromyalgia symptoms, and which I use. However sometimes the organic methods just aren’t enough to quite cut it. (And if that prompts you to think “Well, she just isn’t doing enough/trying hard enough/doing it right.” you can just bugger off right now. We all of us are different and not all methods will work the same, or as well, or at all, for everyone. Here ends the mini-rant.)
I take prescription pain medication, muscle relaxants, and an SSRI. The SSRI is daily, to help boost my energy levels. Before I started using it, even with dietary changes and organic energy boosters, I was flat out exhausted most of the time. I pretty much turned into a koala, such were my periods of sleep vs. wakefulness. Being prescribed the SSRI was one of the best things that happened. No, it is not a magic cure-all for my fatigue, but my episodes of ‘koala-ness’ are now infrequent, rather than every single day.
The pain meds and muscle relaxants I take ‘as needed.’ Which means that some days, when my pain levels are low enough to be tolerable, I don’t take the prescription pills at all. And the muscle relaxants I take even more rarely, as they are largely a preventative measure when I get warning twinges from my back.
This is a balance that works for me. I know there are those out there with Fibromyalgia who don’t use prescription medications and they’ve found ways to make that work. Good for them! But such is not for me.
I guess where I’m going with all of this is my own little counter against both the “All natural all the time!” and “Modern medicine is the only way!” arguments/attitudes I’ve seen. These two things need not be mutually exclusive; they are, at least to my mind, two sides of the same coin. Both have much in their favour, and both also have their share of problems.
Recognise the benefits, be aware of the dangers, educate yourself. Sound advice. Thanks, Mom.
Wednesday, 9 July 2014
When Lives Touch
I am going to blatantly and without shame use an example straight out of Xena: Warrior Princess. Because the truth of what was shown is in no way lessened by being part of a script in a fantasy show.A stone is thrown into a lake, and the immediate impact is that of ripples radiating outwards, the surface of the water disturbed. Eventually though, the ripples will still, and the surface of lake return to calm. But unseen beneath the water, the lake has been forever altered, for the thrown stone still remains.
This has been on my mind a lot recently. But instead of stones and lakes, it’s people and lives. Some encounters are more like wind; they disturb the surface of the lake but don’t change it. But some... some are definitely stones. How they affect your life may not be readily apparent, but the encounter will irrevocably alter it. Allow me to share how one chance meeting has had far reaching and meaningful impact upon my life. This is bound to be a bit rambly, so please bear with me.
It was my 18th birthday, and my mom and I had gone into town for some mother-daughter bonding and so that I could pick out my present. Back then, I took a book with me everywhere, so I’d have something to do during idle moments. Also, it was something of a security blanket. My book was my shield, helping to keep my social anxiety at bay. I can’t remember which exact book I was reading at the time, but the author was Mercedes Lackey.
While wandering through the mall, we stopped at a jewellery kiosk. Mainly just to browse, because shinies! The man working the kiosk gave us the required retail smile and greeting, to which my mom responded while I half-hid in awkward shyness behind her because he was cute. I don’t remember which happened first, telling him it was my birthday and we were present shopping, or him noticing the book I had tightly clutched in my hand. He recognised the author with enthusiasm and asked me if I’d read her Last Herald-Mage trilogy. Me being the socially awkward penguin that I am, and frequently lacking in a brain-to-mouth filter, responded with a happily (over-)enthusiastic, “Oh yes! I love that the main character is gay! More authors need gay characters.” Or something along those lines.
The look on his face.
My brain kicked in at that moment, and I roundly -- but silently -- cussed myself out for being stupid. I should have just left it at, “Yes, I really enjoyed it.” But no. I just had to go and gush and be weird. Somehow that awkward moment was broken, I can’t remember how. But it passed and we moved on, with J being helpful and asking questions about what sort of jewellery I liked and I wound up walking away with a gorgeous sterling silver Chinese dragon pendant. Which I still have. I also walked away with a churning stomach and half-hopeful, half-fearful anticipation because J and I had exchanged AIM details.
During our first chat, he told me he was gay. I wasn’t really sure how to reply. Not because I had any sort of problem with it (aside from being a little disappointed because like I mentioned earlier, cute guy), but because “Yes, and?” felt like too dismissive of a response.
Skipping ahead a bit, though at the time I hadn’t known, I found a brother that day. A teacher. A best friend. Someone who would be and continues to be a huge inspiration and source of goodness in my life -- even if an ocean separates us. Our friendship opened a whole new world to me. Literally, even, for it was J who introduced me to online roleplay in the form of MUSHing.
Skipping ahead further, it was through MUSHing that I met my husband. Maybe I would have found my way to MUSHes without J, but I highly doubt I would have wound up temporarily living in San Jose. Because while we had been friends online for almost 2 years, it wasn’t until we met face-to-face while he was on holiday that A and I fell in love.
After moving to England and marrying A, I discovered the world of MMOs. He’d gotten World of Warcraft for himself and said I could make a character on his account since I was curious. We neither of us expected me to enjoy it as much as I did. I got my own account. This becomes relevant, I swear.
Through A, I also met F. He knew her through MUSHing, and was invited to her and Also-an-A’s wedding. Weddings and receptions are not really great places to meet people, especially when those people are the bride and groom with everyone vying for their attention. I’d also gotten a nasty migraine and had to leave the reception early. But I digress. We met up with F and Also-an-A several more times, and our friendships grew.
As we became more comfortable with each other and trusting of one another, I realised that I had found another best friend in F. More than that: a sister.
Skipping ahead again, to very recently. Just a few months ago, really, though it feels like longer. In the good way.
WildStar went into Open Beta shortly before the live release. I gave it a go and really enjoyed it. Enough to get the game. Toddling around questing one night, I saw a guild advertisement pop up in the zone chat. I figured “What the hell?” and asked if I could join. After a little while, I even braved connecting to the guild’s Teamspeak. And that’s how I ‘met’ JB as more than just a random guildy. In the midst of chatting he made note of my American accent but that I was playing on the EU servers and I told him that I’d moved to England to get married. Further chatting and eventually he asked if I’d mind ‘meeting’ his fiancĂ©, Featherwolf, who is also American but going to be moving over here.
I could go into much more detail, but the short and sweet of it is: Featherwolf and I formed a very strong connection. Strong enough that I happily and proudly call her ‘sister’ and am honoured that she calls me the same.
These people are all so important to me that I cannot imagine my life without any of them in it. Removing them would feel like removing parts of my own soul.
There are, of course, the many other friends whom I’ve met along the way. Though as deserving of mentions as they are, to include them all would turn this from a blog post into a biographical novella.
In this story, clearly I am the lake and J is the stone. The impact he has had on my life has forever altered it. Not only in the paths I’ve taken and the people I’ve encountered, whether directly or indirectly through him, but also myself, as a person. I am a better person thanks to his influence and teaching. He will always be my brother, my Ha’shin.*
And while this is largely biographical rambling, I do have a point hidden in all of this. That point being that we can never know who will be a stone in our lake, or when we will be the stone in another person's. Whether small or large, every encounter has some kind of impact. What we must do is endeavor to make that impact a positive one. Of course, we don’t always have control over the outcome of events, but in as much as we can, we should. Even if you never know it, or realise it years later; even if a meeting doesn’t result in a lasting friendship -- never take for granted the people who touch your life, or whose lives you touch. We all carry with us things to teach, and we all have things we’ve yet to learn.
In closing, I shall blatantly and without shame steal a line from another gem of sci-fi, those wacky teenagers Bill & Ted: Be excellent to each other.
*In Mercedes Lackey’s Valdemar books, Ha’shin is the Shin’a’in word for ‘teacher.’
Stop Saying 'Must Be Nice'
Whether it’s envy or disdain that prompts the impulse, when someone tells you they don’t/can’t work due to chronic illness or disability, do not say “Must be nice to stay home all day.” or any variation of that phrase. See also: “Wish I could do whatever I wanted whenever I wanted.”
Guess what? Having a chronic illness or disability is not nice. Not in the least. And, gasp shock, we don’t get to do whatever we want whenever we want. Far more often, our illness or disability prevents us from doing what we want to do.
Like work.
I was diagnosed with Fibromyalgia a couple of years ago, but had been suffering the symptoms for many years prior. I went through reams of tests. Rheumatoid arthritis, Lyme disease, endometriosis, bone cancer, just to name the big ones. There were more. So many more. Every new test always came back with the same result: negative. I was also hospitalised a few times, underwent a laparoscopy and had an MRI (which discovered a prolapsed disc, just to add insult to mystery). For those who aren’t aware, this is pretty much how Fibromyalgia is diagnosed. Process of elimination. Anyway.
I dread the question: “What do you do?” Hearing it gives me that sinking stomach sensation, because now I have to explain that I don’t work, and why. It’s not just a simple answer, because I have to correct the assumption that I’m unemployed-but-looking, or a stay-at-home mother. There’s also the added joy of trying to explain just what Fibromyalgia is and why it makes working any sort of ‘normal’ job all but impossible.
Fibromyalgia is pain. It’s a bone-deep ache, it’s shards of glass stabbing into your joints, it’s a burning sensation as if your muscles have somehow been set on fire, it’s sharp bolts of pain like you’re being randomly zapped with a cattle prod, it’s your head feeling as if the Hulk is crushing it in his hand, it’s laser beams of death being fired into your skull, it’s cramps so bad you can only liken it to an Alien chest-burster that got confused and is now tangled up in your guts.
Fibromyalgia is exhaustion. It’s having barely enough energy to crawl out of bed to make it to the loo before crawling right back into bed again. It’s the tired of having been active and on your feet all day after only three hours of puttering around the house to make breakfast and do a bit of tidying. It’s a sledgehammer of sleepiness where you’re perfectly fine one moment and the next can barely keep your eyes open.
Fibromyalgia is confusion. Cognitive dysfunction, also called fibro-fog. It’s forgetting what you’re doing in the middle of doing it. It’s losing words and having to struggle to finish a sentence. It’s forgetting names two minutes after hearing them.
Fibromyalgia is completely unpredictable. Asking me if I’m going to be feeling all right in three weeks/days/hours is like asking a Magic 8 Ball... well, anything.
I never know when I’m going to have a good day or a bad day, or when a good day is going to turn bad. All I can do is be hyper-aware of the signals my body is sending me and adjust to hopefully keep things at a balanced level.
So when I say I don't work due to chronic illness, and get the reply “Must be nice.” or “Wish I could stay home all day.” it’s more than a slap in the face. More than a punch in the gut. It’s a full-on Bruce Lee just flying-kicked me through a brick wall. Whatever the intention of the person saying it, whatever they might be thinking, it only comes across as one way: condescending. Because I have an illness, all of a sudden I am ‘less than.’ ‘Not good enough.’ I have been judged and found lacking as a person.
I didn’t ask for this. I didn’t want it. I wish I could work. I wish I didn’t need a cane for short distance walking. I wish I could commit to a long day out without needing a wheelchair.
Having Fibromyalgia, or any other chronic illness or disability that makes doing ‘normal’ things like holding a regular job difficult to impossible, is nothing to be envied. It is not nice. I can’t say that enough. It is not nice.
Yes, most days I’m at home and able to indulge in my crafting hobbies, my gaming, watching favourite TV shows and films, and that sounds wonderful right? It really, really isn’t. If other people think I’m lazy, just imagine how I feel, when I want to a productive member of my household. When, on a really bad day, I can’t even get out of bed, but there’s laundry to fold and dishes to wash and any of the other innumerable everyday tasks of keeping a house tidy. When, on a bad day, just doing a load of dishes or folding the laundry leaves me feeling like I just ran a 5K marathon.
Constant pain of varying degrees and types, constant fatigue of different levels, takes its toll, and not just physically. Mentally and emotionally as well. I am always fighting against depression, against feeling worthless and useless, against feeling like I’m nothing but a disappointment to everyone around me, against feeling like a burden on my husband. I might be outwardly laughing and smiling, but on the inside I’m a dark, writhing mass of self-recrimination and guilt.
So tell me again how that “Must be nice.”
Guess what? Having a chronic illness or disability is not nice. Not in the least. And, gasp shock, we don’t get to do whatever we want whenever we want. Far more often, our illness or disability prevents us from doing what we want to do.
Like work.
I was diagnosed with Fibromyalgia a couple of years ago, but had been suffering the symptoms for many years prior. I went through reams of tests. Rheumatoid arthritis, Lyme disease, endometriosis, bone cancer, just to name the big ones. There were more. So many more. Every new test always came back with the same result: negative. I was also hospitalised a few times, underwent a laparoscopy and had an MRI (which discovered a prolapsed disc, just to add insult to mystery). For those who aren’t aware, this is pretty much how Fibromyalgia is diagnosed. Process of elimination. Anyway.
I dread the question: “What do you do?” Hearing it gives me that sinking stomach sensation, because now I have to explain that I don’t work, and why. It’s not just a simple answer, because I have to correct the assumption that I’m unemployed-but-looking, or a stay-at-home mother. There’s also the added joy of trying to explain just what Fibromyalgia is and why it makes working any sort of ‘normal’ job all but impossible.
Fibromyalgia is pain. It’s a bone-deep ache, it’s shards of glass stabbing into your joints, it’s a burning sensation as if your muscles have somehow been set on fire, it’s sharp bolts of pain like you’re being randomly zapped with a cattle prod, it’s your head feeling as if the Hulk is crushing it in his hand, it’s laser beams of death being fired into your skull, it’s cramps so bad you can only liken it to an Alien chest-burster that got confused and is now tangled up in your guts.
Fibromyalgia is exhaustion. It’s having barely enough energy to crawl out of bed to make it to the loo before crawling right back into bed again. It’s the tired of having been active and on your feet all day after only three hours of puttering around the house to make breakfast and do a bit of tidying. It’s a sledgehammer of sleepiness where you’re perfectly fine one moment and the next can barely keep your eyes open.
Fibromyalgia is confusion. Cognitive dysfunction, also called fibro-fog. It’s forgetting what you’re doing in the middle of doing it. It’s losing words and having to struggle to finish a sentence. It’s forgetting names two minutes after hearing them.
Fibromyalgia is completely unpredictable. Asking me if I’m going to be feeling all right in three weeks/days/hours is like asking a Magic 8 Ball... well, anything.
I never know when I’m going to have a good day or a bad day, or when a good day is going to turn bad. All I can do is be hyper-aware of the signals my body is sending me and adjust to hopefully keep things at a balanced level.
So when I say I don't work due to chronic illness, and get the reply “Must be nice.” or “Wish I could stay home all day.” it’s more than a slap in the face. More than a punch in the gut. It’s a full-on Bruce Lee just flying-kicked me through a brick wall. Whatever the intention of the person saying it, whatever they might be thinking, it only comes across as one way: condescending. Because I have an illness, all of a sudden I am ‘less than.’ ‘Not good enough.’ I have been judged and found lacking as a person.
I didn’t ask for this. I didn’t want it. I wish I could work. I wish I didn’t need a cane for short distance walking. I wish I could commit to a long day out without needing a wheelchair.
Having Fibromyalgia, or any other chronic illness or disability that makes doing ‘normal’ things like holding a regular job difficult to impossible, is nothing to be envied. It is not nice. I can’t say that enough. It is not nice.
Yes, most days I’m at home and able to indulge in my crafting hobbies, my gaming, watching favourite TV shows and films, and that sounds wonderful right? It really, really isn’t. If other people think I’m lazy, just imagine how I feel, when I want to a productive member of my household. When, on a really bad day, I can’t even get out of bed, but there’s laundry to fold and dishes to wash and any of the other innumerable everyday tasks of keeping a house tidy. When, on a bad day, just doing a load of dishes or folding the laundry leaves me feeling like I just ran a 5K marathon.
Constant pain of varying degrees and types, constant fatigue of different levels, takes its toll, and not just physically. Mentally and emotionally as well. I am always fighting against depression, against feeling worthless and useless, against feeling like I’m nothing but a disappointment to everyone around me, against feeling like a burden on my husband. I might be outwardly laughing and smiling, but on the inside I’m a dark, writhing mass of self-recrimination and guilt.
So tell me again how that “Must be nice.”
Thursday, 3 July 2014
Divine Aspects
DISCLAIMER: This is my personal belief. You don't have to agree with it, you don't have to share it. All I ask is that you respect it and if you wish to engage in discourse, keep it polite and civil. Bright Blessings
I can't pinpoint exactly when I first began to think of the Divine as a single Entity (or Force, if you will). When I initially began my journey down a Pagan path, I believed in a multitude of Gods and Goddesses, all separate and distinct from one another. And while I do still believe that They are all distinct, I no longer believe that They're separate. Not completely, anyway.
I have come to believe that it's pure hubris on the part of anyone who claims to fully understand and comprehend the Divine. It's just not possible. This Entity, this Force, is huge, spanning across not just this Universe, but all possible Universes, realities and dimensions. We can connect with It, merge with It, commune with It, but fully comprehend It? Nuh uh.
The simplest analogy I can make is that the Divine is like a spinning multifaceted prism with light shining through it. When we look at the prism, our eyes are dazzled by the light refracting through all the facets and casting rainbows to swirl around us. And even when the prism is still, there are facets that are distorted or obscured from our view. We can change our angle of view, but we still can't see the entirety of the prism clearly.
So, how exactly does that analogy relate to the multitude of Gods and Goddesses who are honoured and worshiped across the world? Simple. Our mortal comprehension is limited. To fully and completely connect with the Divine as a whole would overwhelm our organic brains and bodies; the energy is just too vast, too powerful. But we can 'see' and connect to facets, and then we translate that spiritual experience into something we can relate to from our mortal experience. The shape of our lives, the culture we were raised in, the attitudes and influence of the people around us.
The result being the creation of Aspects. Born of the Divine, but given life by our belief in Their existence.
I feel it's important for me to note here, that this belief of mine does not mean that I discount the individual stories and mythos of the various Gods and Goddesses. It is not just our reality that contributes to the creation of these Aspects; also, They exist in realities of Their own.
They are the rainbows cast by the prism, each distinct, but still connected to and a part of the Divine Source.
So basically what I'm trying to say here is that whether you believe in only one God/dess or many, in the end we honour the Divine in our own way. That is my belief. That is why I embrace and celebrate the diversity of spirituality. I don't need to follow a specific Path to offer respect to its practitioners and the Aspects associated with it.
Learn from our differences and find kinship in our commonalities, for there is much we have to share and to teach.
I can't pinpoint exactly when I first began to think of the Divine as a single Entity (or Force, if you will). When I initially began my journey down a Pagan path, I believed in a multitude of Gods and Goddesses, all separate and distinct from one another. And while I do still believe that They are all distinct, I no longer believe that They're separate. Not completely, anyway.
I have come to believe that it's pure hubris on the part of anyone who claims to fully understand and comprehend the Divine. It's just not possible. This Entity, this Force, is huge, spanning across not just this Universe, but all possible Universes, realities and dimensions. We can connect with It, merge with It, commune with It, but fully comprehend It? Nuh uh.
So, how exactly does that analogy relate to the multitude of Gods and Goddesses who are honoured and worshiped across the world? Simple. Our mortal comprehension is limited. To fully and completely connect with the Divine as a whole would overwhelm our organic brains and bodies; the energy is just too vast, too powerful. But we can 'see' and connect to facets, and then we translate that spiritual experience into something we can relate to from our mortal experience. The shape of our lives, the culture we were raised in, the attitudes and influence of the people around us.
The result being the creation of Aspects. Born of the Divine, but given life by our belief in Their existence.
I feel it's important for me to note here, that this belief of mine does not mean that I discount the individual stories and mythos of the various Gods and Goddesses. It is not just our reality that contributes to the creation of these Aspects; also, They exist in realities of Their own.
They are the rainbows cast by the prism, each distinct, but still connected to and a part of the Divine Source.
So basically what I'm trying to say here is that whether you believe in only one God/dess or many, in the end we honour the Divine in our own way. That is my belief. That is why I embrace and celebrate the diversity of spirituality. I don't need to follow a specific Path to offer respect to its practitioners and the Aspects associated with it.
Learn from our differences and find kinship in our commonalities, for there is much we have to share and to teach.
Tuesday, 1 July 2014
The 'I Am' Post
I tend to not be so good with these intro things. Silly, huh? A small surface overview of 'who I am' and 'what I'm about' shouldn't be difficult. And yet, there it is. I stare at the screen and the blinking cursor mocks me.
Of course, it does that quite a lot, intro post or not. Writer's block, that nemesis of millions. ^.~
So, let's see. I enjoy writing fiction, usually of the fantasy variety, though I haven't written anything in ages. I would say mostly original stories, but in recent years the majority of what I've written falls firmly under the title of fan fiction.
I'm quite a crafty type. I knit, crochet, cross stitch, make jewellery (usually beaded) and spin. I also do a teensy bit of hand-sewing once in a blue moon.
I'm an amateur artist; it's a hobby, not something I attempt professionally. I play around with a lot of different mediums: water colours, oil paints, pencil sketches, crayons (that's totally valid!). Just this year I delved into the world of digital art, and I've been greatly enjoying it. I haven't done too many pieces yet, but I'm learning and gradually finding my style.
Oh yes, I'm a gamer girl. I enjoy quite a few different games, from online MMOs, to single-player FPSs, to adventure games, to the more 'old school' board and card games. That is by no means the full list, just enough to give you a gist. =^.^= And speaking of games (and other things that I wasn't speaking of), I'd really like to get into Cosplay one of these days.
Let's see, what else? I'm an eclectic Pagan walking a Solitary path. Most recently I've been studying Santeria, as I feel quite a strong pull toward it and the Orishas; Oya and Yemaya in particular. There are also quite a few elements of Buddhism in my personal belief system, along with some Native American and a smidge of Norse. And a smattering of others. ^^
I believe in equality for all humans. ALL humans. I don't care what colour your skin is, what gender you identify as, who you love or what your religious/spiritual beliefs are. The only time I start to care is when someone tries to force their views, values and beliefs upon others. Otherwise, live and let live, I say.
"An it harm none, do what ye will."
I will say it plain: I am bi-sexual. This comes up only because I do and will talk about women that I find attractive, as well as men. This can confuse people because I am in a strong, satisfying monogamous marriage with a most wonderful man. So the usual assumption is that I'm straight.
My husband and I have known each other for 14 years, been together for 12, and married for 10. We 'met' online, then met face-to-face in California, and now live together in England. His home country; I'm an ex-pat. I originate from Wisconsin, the Land of Cheese. ^_^
And ya know what? I'm just gonna leave it there. Future posts shall delve more deeply into the wide variety of things that make me who I am.
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