Tag Archives: Social Media

Making Social Media Work for Me

Dear Audy,

A while back, I took a long break from social media. I left myself out of the loop for a couple of months because I was overwhelmed, wasn’t coping well and felt like my online world was a big mess of obligation and crap. I realised that feeling that way meant that I was doing social media wrong.

I’d misstepped and followed a tangent trail too many. I’d gotten lost in the vastness of cyberspace and I was pretty sure that George Clooney was not going to show up with a jetpack and propel me back to safety. Although, that would have been nice. Sandra Bullock gets everything.

I realised that if I wanted to enjoy interacting online again, then some things were going to have to change. Living with CRPS means that I spend a lot of time alone at home. Without the internet, that time can feel as isolating as the situation literally is. Connecting with other people online isn’t just an escape, it’s an adventure, a journey and a way to explore the world when illness is trying to keep me hostage.

Click for source.

Click for source.

I set out to create a my own little corner of cyberspace in which I not only felt comfortable, but also enriched, inspired, entertained and appreciated. I reflected on the ways that I had been upset by online interactions in the past and how I might have approached things differently, or reacted more effectively. I considered the types of posts that tended to make things twitch in the this-is-so-annoying corner of my brain and the types of posts that made me ponder, or giggle, stuff that left me happy that I checked my news feeds that day.

I recognised that in the years that I have been blogging and using social media, I have been through several different phases in how I use different platforms and how I connect with other people.

And, at times, I’ve been a dick. Let’s just get that out in the open. I’m sure many people can relate to having been a dick at least once before they learned better.

Phase 1: Reciprocate or die

Six or so years ago, social media was small enough that it was easy to slide into a community of people interested in a certain subject and make new friends. I started blogging and soon after, I was Facebook friending others with CRPS and it was easy to get to know one another through updates and chats. I predominantly tweeted with others from Melbourne and felt like I was a part of my local online community, even though I was rarely out in the real one.

My Twittering pattern used to consist of something like “follow somebody that looks interesting, wait to see if they follow back, unfollow if they don’t want to be friends”. I was only interested in following people who were interested in following me because that felt fair and worthy of my time. If somebody dared to unfollow me, I’d unfollow them right back, feeling hurt and betrayed over some unspoken agreement that never existed.

I’d be hurt if somebody that I never interacted with unfriended or unfollowed me and I’d continue following people that I regularly found annoying or uninteresting out of a sense of obligation.

It all felt so personal.

Phase 2: Please like me

This phase mainly applied to blogging. Anybody who has ever bothered to write a blog has wondered about just how successful they can be. It’s really easy to get addicted to stats. They are a popularity poll that gets updated on a daily basis, after all, who wouldn’t want to see those numbers go up?

Advice from bloggers to bloggers often proclaims that exposure and interaction are everything and that more interaction will lead to more exposure. Yep, this is true. However, in following these steps to success, I found myself wandering blindly in a bunch of bloggers who mostly wanted nothing but to offer over the top appreciation in expectation that it would be returned. A comment wasn’t a thoughtful contemplation inspired by the content of a post, it was a currency for return comments. You scratch my back and I’ll scratch yours is all good and well in theory, however how much does attention really mean if it’s only for returned attention’s sake?

I ended up with an RSS feed filled with blogs that I really wasn’t very interested in. The biggest category for personal blogging is parenting and I am not a parent. I was reading all about the children of people that I’d never even met. I followed fashion bloggers even though I didn’t really care about fashion trends. I wanted to support others in the hope that they’d support me. In retrospect, it was all a little bit silly.

I don’t mean to imply that I’m not interested in parents or dresses, some of my best friends are parents or dresses and some of my favourite bloggers write about their children or their dresses. I only mean to say that I don’t have room to be interested in every parent or dress that decides to start a blog.

The truth is, I wanted to be in the in crowd.

Phase 3: Let them all in

Time passed, as it always does. More and more blogs devoted to chronic illnesses began to appear. More and more blogs written by writers who were local to me. More and more friend requests came through on Facebook, more and more Twitter followers subscribed. More and more people in all of my feeds. More and more people than I could ever get to know on a personal basis within one lifetime. More and more people who it felt rude to ignore because I was still in a major “reciprocate or die” rut and I hated to be a hypocrite.

You’ve probably already guessed what happened next. Always accepting requests, following back and subscribing meant that my feeds started to flood. My Twitter feed was jumbled garbage, often with fifty people offering useless comments on the same news items. I could no longer get to know new people because their updates got lost in the crowd.

I didn’t feel as though I could just unfollow anybody, because reciprocate or die…and so, I hid. I made short lists for updates from my closest friends and ignored everybody else. This worked for a while, until I realised that I’d thrown out the baby with the bathwater. I’d cut myself off from fulfilling online relationships when I ran away from the pointless ones.

I’d dammed the rivers that brought me regular sources of inspiration.

Phase 4: Hey, you’re interesting!

After taking some time out, I decided to refine all of my social media feeds by taking reciprocation out of the equation. I unsubscribed from the blogs that I always found myself scrolling past anyway. I stopped following people whose tweets annoyed me, depressed me or bothered me for whatever reason. I hid updates from Facebook friends that I never interacted with, or who tended to post a lot of stuff that I didn’t really want to see.

I thought about the ways that different social media platforms are good for different types of sharing and made some conclusions that work for me.

Twitter is for entertaining me. This is usually through humour or poignancy. Only I can decide if following a particular account is enriching my existence or simply flooding my feed. I chose to let go of the idea that reciprocation is necessary for me to enjoy the thoughts of somebody else. I now follow many accounts because they entertain me, regardless of whether or not the other person cares to follow me back. It turns out that somebody doesn’t have to like me back in order for me to find them interesting.

Facebook friendships are for people that are interested in knowing me, who I am also interested in knowing, personally. Some of these are people from the real world, some are people that I’ve had a meaningful, online connection with. I allow subscribers on my personal Facebook account, which means that anybody can feel free to receive my public updates without me having to feel like I need to be friends with everybody who is interested in reading this blog, or who lives with chronic pain. Don’t get me wrong, I’m super grateful that anybody finds me interesting at all, it just isn’t a thing that means I have the capacity to reciprocate all of those feelings other than in a thank-you-everybody, or responding-to-specific-comments/messages type of way.

Facebook is also for pages, which I often find a lot more interesting than personal accounts. I follow a lot of pages related to science news, psychology, coping with chronic pain and a vast array of entertainers. Snobs love to announce that they don’t ever check Facebook because they don’t care what that girl from grade 6 had for lunch…but they’re doing it wrong. Creating a Facebook feed that you like isn’t about forcing others to be entertaining by your personal standards, it’s about finding the pages and people that already are.

Thinking like this has helped me to use the Rellacafa page in a more useful way by basically just sharing things that I find interesting in relation to living with CRPS. People can choose to subscribe, or interact, or not, it’s all voluntary and that takes some pressure off of me feeling like I need to impress if I am going to offer things up for public consumption. I’ll just keep sharing what interests me, others can go ahead and decide whether they like that or not.

RSS feeds (I use Feedly) are for blogs and news. I mean, they always have been, it just took me a while to figure out that I could be more discriminating about what I put in there. If I find myself always skipping past posts from the same site then that’s a pretty good sign that I’m not really interested in that feed, even when I kind of think I should be interested. Unsubscribing from filler gives me a lot more time to read and ponder on the posts that I find more enthralling.

Instagram is…just the best. No, really…it’s great. I love snapshots from people’s lives, especially celebrities that are always jet-setting off to another stunning part of the world. I love artistic shots. I love holiday snaps as much as the little daily moments that people capture. I love following outrageous people and interestingly quiet people. I love watching as people’s interests and activities change over time. I even love selfies. Yep. Love ‘em.

Phase 5: The internet is great when your feeds are in order

I no longer feel like I’m drowning in information when I open my social media feeds. I look forward to the updates that I receive and I usually set my iPad down feeling a bit brighter and more informed than when I picked it up. I have more time to read things that teach me about what’s happening in the world, or teach me to understand what’s happening within myself. I have more time to chat with my friends because I’m not obligated to read pages of updates from people that I’ve never really gotten to know.

I even have more room for making new friends. I know, that probably sounds ridiculous when I’m mostly writing about cutting down the number of people that I interact with, but the truth is that not everybody is destined to be everybody else’s best friend. Some people just click, it’s always been like that and the clicks are easier to hear when there’s less buzzing around us. Instead of scrolling past a hundred updates, I’ll actually pay attention to a few and that feels like a more valuable way to spend my time.

I am mostly looking at things that I like, or find challenging, or interesting. Doing so puts me in a different frame of mind than when those goodies were constantly broken up by things that frustrated or annoyed me. I am less judgmental of people in general and that seems to make me care a whole lot less about whether or not somebody wants to judge me for the things that I share online.

I feel free to shower the people that I follow in warm fuzzies. I double tap like crazy when scrolling through my instagram feed because I am just plain enjoying the images and the stories behind them. I star or retweet the tweets that I giggle at or relate to. I like and share the Facebook posts that brightened my day or made me think. I comment on blogs when I have thoughts to share and technical difficulties don’t get in the way.

I just go about the internet, genuinely enjoying what I enjoy and have stopped conditioning my interests based on whether or not that interest is interested in me. My senses of happiness and self worth are no longer tied up in how I am perceived online, or in general. I feel free to think things and express them and what more could I want from a world that exists within minds and machines?

Reciprocate or don’t…I’m still going to go ahead and enjoy you. Unless you block me. Don’t block me. Why would you block me? I promise not to be rude.*

*Too rude. I will, however, walk on the hilarious edge of a joke.

Love & Adaptation,

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  • The Confusing Art of Communicating a Life in Chronic Pain

    Dear Audy,

    The physical pain of CRPS has been highly restricting me for several weeks now. Well, it’s been doing that for over seven years, but what I mean to describe is a higher level of incapacitation than I was dealing with before the slump began. Mentally, I’m coping really well, which leaves me existing in a strange mind/body duality that I’m trying to figure out how to communicate.

    This is a world of sharing, for those who choose to participate in the whole social media thing.

    Me, Instagramming a day of forced lying down.

    Me, Instagramming a day of forced lying down.

    Sometimes, I wonder how healthy people perceive my updates. A lot of people online will exploit any sort of tiny complaint for sympathy and a million x’s and o’s. If you’ve never seen an “I have a cold” post followed by a bunch of “Oh, that’s TERRIBLE” comments, then you haven’t been on social media for very long. Whilst I don’t really care about whether or not anybody else wants to fish for sympathy for whatever reason, I do worry that people who follow my posts might think that I’m doing the same.

    How do I share pain without misery? How do I share isolation without loneliness? How do I share incapacitation without frustration? How do I share a life of chronic pain without being a chronic complainer?

    “Complaining and whining can be distinguished by the nature of the dissatisfaction and by our motivation for expressing it. Complaining involves voicing fair and legitimate dissatisfactions with the goal of attaining a resolution or remedy. When we voice legitimate dissatisfactions but do so without the goal of attaining a resolution we are merely venting. And when the dissatisfactions we voice are trivial or inconsequential and not worthy of special attention, we are whining.” – Guy Winch, Ph.D, The Difference between Complaining and Whining, The Squeaky Wheel

    For me, an important difference between complaining, venting and whining is the way it makes me feel afterwards. Lately, I’ve been experiencing some extra pain and discomfort in my left hip, knee and ankle. It’s an elevated level of pain to the usual drone of CRPS and a more muscular-skeletal feeling pain than burning nerves.

    Being pained and incapacitated is a legitimate dissatisfaction, so whining about the actual problem is not exactly possible in accordance to the definition above. What I am able to do, however, is whine about how this pain effects more trivial parts of my day. You know, “I can’t go for a waaallllk”, “I can’t bake cooooookies”, “I don’t want to watch the criiiccckkett” (specific for those who don’t like cricket, nor do they love it, but they totally get that reference because they fell for sports fans).

    How does whining make me feel? Well, mostly amused because these days I’m joking, but I haven’t always been this clearheaded. Were I feeling weak, I might just fool myself into believing that the things I am whining about actually matter and then begin to feel genuinely upset about them. In that instance, the main accomplishment of my whining would be to add a smaller, more immediate problem on top of what I’m already dealing with. Creating problems from nothing is a pretty silly thing to do, but I dare you to claim that you’ve never done it…

    Whining will only make the problem bigger, but I can vent about it. Sometimes, venting can help you to release something that’s been boiling inside, however, let venters beware that there can be downsides. If you’ve been reading this blog for a while, you’ll know that I can spend a lot of time venting. Years, even.

    How does venting make me feel? Different now, than earlier. It used to feel good to just blurt out anything and everything that was wrong. Venting about the same, unrelenting problem for years can stop helping and start hurting my chances of moving on and out of that emotional loop. There are only so many times that I can feel the same feelings, release them, generate them again and release them before it starts to seem like they are just too domesticated to be returned to the wild.

    They’re my feelings, I have to own them and deal with them instead of yelling them at anyone who’ll listen. Dealing with them involves a lot of introspective work on changing my beliefs and perspectives, it’s a lot harder than venting, but I am feeling more calm and in control the longer I work at it.

    Venting can be super helpful when you have a lot of anger to get out. Venting can be ridiculously satisfying in the short term. Eventually, feeling angry can become grating and tiresome and so learning to understand and hush the sensation before it builds up to explosion point becomes a more useful goal.

    I can definitely complain about my pain. Complaining doesn’t have to be a negative thing. In the instance that I couldn’t figure out why I’m in extra pain, I’d show up at the GP, get complaining and get some sort of action plan happening. As it is, I know that this discomfort is being perpetrated by a little twist of the pelvis and that the most likely reason for this is muscles tightening when they really don’t need to be. I’ll be going to complain to my osteopath about this later in the week and then he will do some rubbing and adjusting and there’s an excellent chance that I’ll end up feeling better.

    Complaining isn’t weak or a character defining thing, it’s basically just asking for help when you need it.

    The ugly truth is that I live with a highly debilitating case of Complex Regional Pain Syndrome. The confusing part about sharing my life is that I tend to feel better if I’m not constantly acknowledging that this is an “ugly” truth. When it’s just the truth, I can get to dealing with what I can still deal with, I don’t have to be held back by feeling horrified by my situation.

    It’s easy to perceive a life of pain and illness as pretty shitty, that is, unless you’re the one living it. It’s way harder to perceive you’re own life as pretty shitty, those sorts of feelings are truly horrible and lead to things like frightening suicide statistics. In order to play the hand I was dealt, I have to keep finding ways to perceive a life of pain and illness as not really that shitty and perhaps even awesome sometimes.

    If I just keep working on communicating this point, maybe my strange mind/body duality won’t seem so strange at all. I mean, you read this whole post, you totally get it now, right?

    Love & Pondering,

    P.S. I am attempting to utilise the Facebook page for this blog more often to share links that you might find interesting and personal updates related to coping with chronic pain. This helps to stop me from spamming everyone I have ever met from my personal account. Click on over to Like Rellacafa because you want those posts, or just because my grubby dogs think that you should.



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  • Dealing With Negative Feedback In An Online Community

    Dear Audy,

    Living with chronic pain or illness can be confronting, consuming and most of all confusing. The internet allows people to connect without needing to leave their homes and this has been a great asset for those who can’t get out during the majority of their time. Online support groups run wild and free here, in the world beside the real one.

    Sharing creates vulnerability and sharing publicly opens a person up to the opinions of everybody who comes across what they’ve said. Being a blogger, I am no stranger to receiving negative feedback and in the spirit of continued sharing, here’s a story about how I choose to deal with it.

    thumbs down

    Click image for source

    I’ve been blogging and involved with with online support groups for Complex Regional Pain Syndrome (previously known as Reflex Sympathetic Dystrophy) for several years now. I’ve experience both positive and negative interactions and people during my time as a part of this cyber community. Some of these have been firsthand and others have just been me, watching wide-eyed as others publicly rip shreds off of one another.

    The first thing that you need to remember about interacting on the internet is that it’s mostly public and everybody loves to watch a metaphorical car crash.

    I’ve written before about the things to consider when stepping out into the open plains of cyberspace. Interacting Online: The Joys, The Struggles & Surviving Unharmed has been one of the most popular posts that Rellacafa has borne witness to.

    If you’re looking for my advice about how to conduct yourself within online support groups, please check out the forum guidelines over at Chronic Pain Australia.

    Communicating online is a massive topic, mostly opinion based and perceivable in millions of slightly different ways. Occasionally, I will conduct myself with what I consider to be reasonable humour and integrity and yet still find that I’ve sent somebody into a rage.

    It happens. Nobody ever claimed that this world is lacking in different opinions.

    Responding to negative feedback is a learning curve, both in terms of actual experience and experience with social media. Newly blogging Caf was of the mind frame that one should always engage a debate if one has something intelligent to say, however currently blogging Caf has evolved in her ways of thinking since then.

    Sometimes, the best reaction to an online attack is to do and say nothing. This can be a difficult course of action for some and an easy, water-off-the-back situation for others. In my personal experience, the level of inflamed that I get by another person’s comments and how I subsequently respond depend on a few things.

    Firstly, there’s how I am feeling at the time. When sore and weak, or fatigued, or depressed, my defences are down and it’s a little bit easier for nasty words to stab through to my feelings.

    Not responding, or waiting until later to consider a response is usually the least regrettable thing to do in these instances. Sometimes I don’t wait long enough and sometimes I wait so long that I feel silly sending a response after so much internet time has passed. Sometimes, my responses are delayed due to poor health or busyness, rather than a difficulty in deciding how to reply. I’m still learning, I don’t think I’m ever going to stop doing that.

    I like to pay regret a little bit of measured attention because that helps me to make better decisions in the future. This is different to anxiously regretting things that no longer have any lessons to teach.

    Secondly, there’s the ridiculousness factor. A well thought out, but differing opinion to my own is always appreciated in the comments section of this blog, those writers deserve responses and I enjoy considering their point of view in light of my own.

    I’m not going to fault people for disagreeing with me, but I am probably going to laugh if they launch a nonsensical or personal attack. Provided, of course, that I’m not wading about in a weakened state. Somebody recently commented on one of my vlogs that I talk too much and explained that the accompanying emoticon was them spitting in my food. Hilarious, but not worth the time or effort of a response.

    Thirdly, once I’m past my initial reaction or instinctive emotional response, I thoroughly consider both the content and the source.

    Who is the comment from?

    How much do I respect their opinion?

    Have they understood my post or are they responding to a skimmed misinterpretation?

    How well balanced is their argument?

    How well balanced does their mind seem to be?

    Are they offering a different opinion or just seeking to find faults with mine?

    That last one is a big one, you’d be surprised how many fanciful little contrarians populate the internet, or not, since you’re reading this and, thus, have actually been on the internet.

    Lastly, I consider whether or not responding to the negative feedback will add something useful for other readers who stumble upon the comment conversation.

    I let the answers to these questions gurgle away in my mind and then decide whether or not to walk away and let it go, walk away and bitch about it to a good friend (we’ve all got to let the steam out sometimes), or to engage with the commenter.

    If I do decide to respond, I attempt to do so with an attitude open to learning and after letting go of any emotional response I’ve attached to the feedback.

    Negative feedback is only that because it’s interpreted so. Even a blatant insult can be interpreted in ways that allow for empathy and compassion toward the abuser.

    I try to keep my responses well-reasoned and well-intentioned. If somebody is genuinely wanting to teach me about a perspective on a topic that I had not recognised or considered, then I am most happy to hear about it.

    I often seek to clarify the commenter’s intention when initially responding. Sometimes a veiled insult is just that person expressing the anger that they are feeling about what I’ve written. It’s not necessarily personal, just like my blogging about my opinion was not a personal attack on theirs.

    I write about controversial topics sometimes and, even when a topic seems light, there are going to be people who agree and people who don’t. If a blog post that I’ve written elicits a response from somebody in either camp, then I view that as a good thing.

    Discussion isn’t always about agreeing and I see blogging as both a method of broadcasting and as a conversation starter.

    I’ve experienced situations that began as negative feedback and then became fruitful discussions. I’ve also experienced situations that began as negative feedback and just spiralled into something akin to name-calling. I’ve responded badly and I’ve responded well, doing both is a part of learning how to respond to anything.

    The most important thing to remember about interacting in an online community is that it should be of benefit to you. It should make you feel a little bit better about something, or a little bit more informed, or a little bit helpfully challenged. Your role in your life is to make the best decisions for you. If participating in an online support group starts to leave you feeling saddened, depressed or unmotivated, it can be an indication that it’s time to move on.

    Carly Findlay wrote a wonderful blog post about a time that she decided to leave an online support group. Please follow this link and read her eloquent reasoning for doing so. Sometimes support groups don’t work out and that’s OK, it’s important to recognise if the online community that you’ve found yourself involved in is no longer making your life better.

    Ultimately, your online world is yours to create. If you decide to interact publicly then that comes with some personal responsibility about how you conduct yourself and how this affects your emotions or anxiety levels. However, never forget that sometimes there are just going to be people and behaviours that appear crazy or hurtful.

    We can’t please everybody, but we can usually learn something from them.

    How do you deal with negative feedback to your blogging efforts or social media presence?

    Thanks so much to everybody that has been supporting me in the NHBPM challenge! If you like what I am doing, please share these posts with the people that you share things with or click that little thumbs up. It’s CRPS Awareness Month, which is why I’m choosing to disclose a little more about my health on a daily basis. The more awareness that we can raise, the easier it will get for people who are navigating the choppy waters of chronic pain.

    Love & Oh No You Di’n’ts,

    WEGO, CRPS Awareness Month, #NHBPM

    This post written as a part of National Health Blog Post Month, run by WEGO health. Check out what people have been contributing via #NHBPM on Twitter, or joining the NHBPM Facebook Event.

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  • Is Posting About Health On Facebook OK?

    Dear Audy,

    Should people post about their health on Facebook? How about the health of their loved ones?

    Click image for source.

    Today’s NHBPM topic poses an interesting question in light of fast paced changing perceptions of social media and privacy. It’s also an interesting topic to discuss in a month focused on the blogs of people with chronic illnesses and during which I am specifically trying to raise awareness of my own condition, Complex Regional Pain Syndrome.

    Facebook has fast become a centre of social information in modern society. Most people who use this service have experienced that this comes with both positive and negative aspects. You might have also noticed that what exactly is considered positive or negative behaviour on Facebook is different depending on who you instant message about it.

    Over-sharing is not a fact, it’s an opinion. Kind of like this blog post.

    I choose to post about my health on Facebook and various other online communities. Earlier this month, I explained why I would choose to write a blog about my health. The difference between updates on my blog and updates on Facebook is the intimacy aspect.

    Writing and sharing a blog is a little bit like standing up in front of a crowd to deliver a speech. You don’t know exactly who is watching, who of those is listening, who of those is relating or understanding or not really paying attention. Unless they happen to come up to you afterward and let you know what they thought.

    Sharing a status update on Facebook is more like whispering to a group of your friends in the back of the auditorium. You’re talking specifically to people who know you, who (hopefully) like you. A few of them will hear what you say, some will respond, some will offer their own stories in relation to what you have shared. You like them too and you probably care what they think about you.

    So, how much should you tell them?

    The exact amount that will help you to feel connected and understood. Doesn’t sound too hard, right?

    Living with chronic pain is a tough gig. It permeates every aspect of a person’s life, the life that they are sharing with their friends and family on Facebook.

    Some people believe that health is one of those things that you shouldn’t talk about, like politics or religion.

    Speaking about health is not a controversial topic that might divide the room, the idea that people shouldn’t speak about their health stems from the listeners not wanting to hear about it.

    There are people who believe that bodies are always a private thing, they don’t want to hear about your sex life or your hospital visits and they don’t really see the difference between those topics.

    These are probably not the sorts of people that are going to be an asset to the online world of somebody living with chronic illness. They are, however, the sorts of people whose opinions might serve as gags on the mouths of their sick friends who don’t want to offend, who don’t feel comfortable challenging the comfort levels of the bodies are private types.

    Many aspects of my health are not private at all. I disclose them to my friends, my family and the public and I do this without shame. I do this because I am not my illness, I am not CRPS, however I am most certainly incredibly influenced by it and its part in my life. I have to deal with it every day, I cannot choose to hide it from my newsfeed.

    Complaining is rarely beneficial to me, however venting can be a huge help. Sometimes, it is all just too much and I’ll send an exasperated tweet or status out to the universe comprised of my online connections. Often, these messages reach people who understand, who reach out because they can relate. The truth is that we are never alone, despite chronic pain often resulting in physical isolation.

    Somebody else knows what it’s like to feel like you do. Always.

    I’ve been through periods when I didn’t want to send out any negative updates. I was trying not to focus on those feelings and I didn’t want to validate my emotional down turns by broadcasting them. The truth is that nobody’s life is 100% positive all the time and by only sharing the times I could muster positivity, my profile had stopped to feel like a real representation of myself.

    I am the down days too and I can appreciate the value that adds, good days couldn’t happen without them. Good only exists in relation to bad. You can have a basket full of good eggs, but only because there have been bad eggs. If not, all you’d have in your basket would be nondescript eggs.

    And so I share it all, all that I can stand to.

    I do this in the pursuit of awareness. This word means so much more to those that find themselves living a kind of life they’d never even heard of before, to those that feel sick and invisible.

    But, how much should my friends and family share about my health?

    Sharing other people’s stories should always be a thoroughly considered undertaking. Everybody has different ideas about what they’d like told and what they’d like to keep private.

    This sounds complicated and like maybe you should just shut up, but that’s not the case at all. If you aren’t sure about whether or not your sick friend minds you talking about them on social media, ask! Even if the answer is no, the fact that you bothered to care is going to mean something to them. Trust me.

    For bloggers who live with chronic illness, it can be a little bit easier to garner what they will and won’t mind you talking about (still, ask if you’re at all unsure). If I’ve written about it on my blog, you can talk about it.

    In fact, please talk about it.

    I want you to talk about it. I want you to care and I want you to help me spread awareness. I want you to share what I’ve written, even when it seems personal. This is a public website and I don’t publish anything that I’m not happy for the whole world to see.

    (I retain the right to retract this statement if I happen to have some sort of Britney-esque breakdown)

    Every now and then, I get a very special kind of message. Sometimes it’s on Facebook, sometimes it’s Twitter, sometimes it’s a blog comment or a direct email. They come from strangers, from people that I’ve never met and they tell me thank you.

    Their senders are healthy, they tell me that they’ve learned about CRPS or chronic pain through my online efforts and that they care. Sometimes they tell me that my words have helped them to understand their friend or family member who lives with chronic pain.

    They warm my insides with a special kind of special feeling. I love connecting with other people in pain through this blog and social media, these relationships have helped me to retain my sanity on many occasions. Most blogging niches have some sense of community and I love the one that I am a part of, however when I reach an audience wider than that then I feel like I have taken one more step.

    I have raised awareness.

    Somebody out there knows about CRPS because of me. One more person is withholding judgement against those with invisible disabilities. One more person is unlikely to assume that a chronically ill person is a hypochondriac, simply because they couldn’t understand or comprehend the truth.

    Maybe that person is a nurse. Maybe that person is physical therapist. Maybe that person is going to be a doctor one day.

    Should people post about their health on Facebook? Obviously, I think that the answer to this is yes, if they want to. Our health is a huge part of our lives, be it well or not. Facebook is a place to share our lives and those that want to share the parts that include their bodies should feel comfortable to do so.

    How about the health of their loved ones? Yes, again. Especially if their loved ones are engaged in efforts to raise awareness.

    I think it’s also important to note that the health of our loved ones can have a huge impact on our own lives, that’s what love does. People who love those with chronic illnesses can have a lot to cope with too and should not always feel like they have to keep their mouths shut simply because their partner/sister/mother/child is suffering “more”.

    Carers are not alone, either. They’re quieter than us sickies, but we couldn’t get by without them and sometimes they need support too.

    Shockingly, this isn’t going to be the only thing that I have to say about raising awareness during CRPS Awareness month. The day after tomorrow holds a prompt from which I shall be writing more on the topic. I don’t know where this version of me that is able to write every day and even plan ahead came from, other than the distant past, but I’m glad to have her back.

    If all this talk of Facebook has you wanting to connect with me there, please like the Rellacafa page and add it to your interests.

    Or, go and post a status update or link that shares awareness about CRPS. Because you totally have permission to do that now.

    Thanks so much to everybody that has been supporting me in the NHBPM challenge! If you like what I am doing, please share these posts with the people that you share things with or click that little thumbs up. It’s CRPS Awareness Month, which is why I’m choosing to disclose a little more about my health on a daily basis. The more awareness that we can raise, the easier it will get for people who are navigating the choppy waters of chronic pain.

    Love & Kisses From The Digital Age,

    WEGO, CRPS Awareness Month, #NHBPM

    This post written as a part of National Health Blog Post Month, run by WEGO health. Check out what people have been contributing via #NHBPM on Twitter, or joining the NHBPM Facebook Event.

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  • Frankie Magazine with added Me!

    Dear Audy,

    This week, something massively exciting happened at just the time that I needed it most. Those who read my last post would probably have noticed that I have been struggling a little bit of late. Nothing particularly awful happened, some weeks are easier to deal with than others that’s all. I needed a bit of a boost and thankfully, the perfect thing arrived in my mailbox!

    It’s my favourite magazine, has been for years… And this month I am in it!!


    Each issue, Frankie includes a feature titled “Everybody has a story”. In issue 47 I am that story. How exciting! I’m so grateful to Stella for putting this article together. I have long wanted to share my story to help raise awareness about CRPS and chronic pain in general. I am so happy with the tone and message of the article that I could bounce off a wall or two.

    I wanted people to know the pain doesn’t have to be a death sentence; millions of people live with every day. Not just survive, but live. Probably some of the people you know – not everybody with chronic pain likes to talk about it. Not everybody with chronic pain is even aware that what they live with is a real condition that is shared by so many. Some of those people feel isolated and maybe just a little bit like they are going crazy. I am so pleased and proud to have had this opportunity to help raise awareness.

    I would love it ever so much if you check out the article in Frankie, you can get a copy from wherever you usually buy magazines or online here: Frankie Press Online Shop

    So yeah, a magazine feature? Total mood boosting magic shot.

    Also helping me put myself back together this week were my lovely friends who sent me messages, called me up and came to visit. You are all wonderful!

    I’m starting to feel like my old self again. I’m starting to feel able to cope with the pain fluctuations and resultant time spent managing them again. I’m still terribly behind with things like inboxes, however I will tackle these little by little and slowly catch up with my online world. Wheeee!

    Do you like to read blogs and vote for things? If so, I have the perfect opportunity for you! Voting is currently open for the Sydney Writers’ Centre Best Blogs of 2012 Peoples Choice Award. I would be most honoured if you wanted to vote for Rellacafa, but please also check out the other amazing writers that you will find on the list and send some love to your favourite Aussie bloggers! Click here to get started.
    People's Choice Award

    Oh, and while I am pimping myself… Have you liked the Rellacafa page on Facebook? Please do! I’d love to interact with you there. You can also find me on Twitter, YouTube, and now Instagram. No need to be shy, I promise to be friendly (unless, of course, you get creepy and then I get creepy and we get into a freaky creep off).

    Self pimping complete.

    I hope that you have a wonderful weekend, Audy! I will do my best to keep regaining my strength and hopefully get back to regular posting next week, including sharing my favourite gems from the blogosphere on Fridays.

    Love & Promos,

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  • Love Beats Hate: Illusions Within Online Friendships

    Dear Audy,

    Love Beats Hate is back for 2011! This is a day set aside to focus on the positive aspects of online interaction and the amazing friends that can be made. The event stemmed from some cases of online bullying, which everyone knows can and has led to tragic consequences for some people. For others, the consequences might not have been tragic, but they have been hurtful. We can’t stop idiots from acting like idiots, but we can stand together and stick up for social media.

    You can see my first Love Beats Hate post here. In that video I am talking about the wonderful friends that I have made and the way in which socialising online has made living with a crippling disability a whole lot easier. The pink gerbera is the symbol for Love Beats Hate, this time around I chose a picture that represents our little bunch of blog posts coming together!

    (click image for source)

    Today I wanted to write a little about maintaining online friendships. As well as school kids bullying one another, there are also adults who behave in the same immature manner. I have seen many cases of people getting upset about something that someone in an online community said or did to them. I have even seen people go into self deprecating rants on Twitter or Facebook simply because nobody has replied to something that they have posted and they jump to the conclusion that this means no one is listening, or cares.

    For those who actively set out to abuse and upset: the person you make most miserable is yourself. For those who get upset if they don’t feel like they have an active audience, remember this: everyone’s life is not about you.

    With social media updates happening every second, across many websites, all around the world, it’s easy to feel like we have to be up to the second on every little bit of information. When I first started using Facebook and Twitter, I felt a great obligation to read absolutely everything that people posted. I had less friend connections back then, so that was easy, but as my online community grew it became impossible to keep up.

    That’s when I began to understand that social media updates (Facebook, Twitter, RSS feeds) are a stream. Sounds obvious, but my epiphany was that I didn’t have to read absolutely everything in the stream. I could just dip face into the water when I felt like it and examine whatever happened to be passing at that moment. How liberating! That was also around the same time that I realised most people aren’t going to read everything that I write either and I am cool with that.

    I am several months behind in reading other people’s blogs, I simply have not had the concentration and energy to take in much information lately. This has nothing to do with the content of the blogs, nor is it an indication of how much I care about the authors, it simply is what is. There is a reason that the saying “It’s not you, it’s me” is so prevalent, because it’s often true – and not just in the romantic relationship setting.

    In my case, prioritising one conversation or reply over another is often not a conscious prioritising effort at all. Most of the time, it’s purely chance; when I get the message or my condition at that time will influence whether I reply immediately. It can take a different mind space to talk about different topics with different people. Exchanging quips with strangers over Twitter is a much different thing to having a in depth conversation with a close friend on the phone, or sitting down and reading a blog post. If I don’t read something immediately, it is usually a sign that I am interested rather than not, I want wait until I have my full attention to give to it.

    One issue that arises with so many public updates, is that people can often feel like they are being neglected in place of other friends or activities because they see their friend engaging with other people. Sometimes, I am sure this is true and those are the cases in which the best thing you can do for yourself is evaluate how much time and effort you feel it is appropriate to give the friend that is upsetting you. Most of the time, however, there are extenuating circumstances influencing what your friend is doing. I find it is usually most suitable to give them the benefit of the doubt, someone who truly isn’t interested in catching up with you will make that clear over time.

    Don’t underestimate the power of feeling sad and lonely, it can project a lot of assumptions onto those you care about and if you choose to act on the assumptions then you could turn a misunderstood situation volatile.

    Another illusion that glimmers in online friendships is that of broadcasting versus communicating. Not everyone realises the difference between these. When I am writing a blog, Twitter update or Facebook status, I am broadcasting. That is, I have something to say and I am saying it, but I don’t always have the energy to communicate at the same time – meaning that if people respond or leave comments, I don’t always get back to them immediately. Communicating requires the ability to think about someone else’s opinions and perspective, broadcasting simply requires being able to word one’s own.

    The easiest way to get the most out of your online friendships is the same as in real life. Be genuine, be yourself and be understanding. Don’t give in order to receive, you’ll only be disappointed. Give because you want to make someone else smile, or because you are genuinely moved to comment or respond to something that has been written. Write because you have something to say, not because you need someone to read it. Care because you can – do you really need a better reason to bring a bit of happiness into your life and the lives of those you care about?

    If you have read this all the way through, thank you for being a part of the community that I cherish so dearly. If I am late responding to your emails, messages or blog posts, don’t feel hurt – It’s not you, it’s me. I’ve had some personal stuff to deal with, but I’ll catch up on all your news as soon as I am up for dealing with more than just my own problems.

    Love Beats Hate, want to participate? Simply blog or tweet and post a link to your contribution on the Facebook page.

    Love & Cherries,

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    Dear Audy,

    Today I am taking part in a blogging event that… actually happened yesterday. Oh wells, I can do things when I can do them, it’s this whole thing where I listen to my body and behave in ways that will assist healing and help me feel better, even when that means avoiding what I actually want to do. In these days that my hands have been mental, all I have wanted to do is write… of course. I am going to get hooked up with some talky/typey software so that I am not forced to stop writing at times like these, when the seasons change and my nervous system can’t keep up, so it throws tantrums.

    I was invited to join in with Love Beats Hate by the lovely Jeanne, from Chronic Healing. The idea behind this initiative is to focus on all the good that is made possible by social media. As a disabled person, the internet has helped me a lot. I just don’t know what I’d do without you, Audy.

    Sometimes, I warble a little to warm my voice up before I start talking to the camera. Today my mindless warbling contained a rather excellent lesson. Let’s not sound like we have a stuffed nose. Giggle, I am always amused when subconscious me sings, quite literally, what she’s thinking. She has a good point. It can be unavoidable, but never sounds good to have stuffy nose voice, especially not when you’re planning on recording what you say.

    (Side note: That’s enough already, airborne allergens. Also, I have no idea why I’m referring to myself in plural. Let us? Me and Subconscious Me? Am I going Gollum?)

    You can check out the Linky page here for other posts by participants of Love Beats Hate to see what other bloggers have to say.

    Have a wonderful day! Go and be nice to someone, just for the sake of it. Giving warm fuzzies is getting warm fuzzies, after all, it doesn’t matter if the person in question reciprocates. Just focus on how good it feels to be genuinely nice, it feels so much better than being rude or cynical or judgemental or mean. The nicer you are, the better you’ll feel… and couldn’t we all stand to feel a little bit better? I think so.

    Having trouble with the CyberBlues? Check out this past post where I ramble on about coping online: Interacting Online: The Joys, The Struggles & Surviving Unharmed.

    Love & Extra Love,

    P.S. Please feel free to share your own stories of internet warm fuzzies in the comments, I’d love to hear them!

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  • Interacting Online: The Joys, The Struggles & Surviving Unharmed

    Dear Audy,

    The world has changed a lot in the past ten years, hasn’t it? The biggest influence that many of us feel in these early years of the 21st Century is that of the internet. The internet allows us to connect in ways that have never before been possible, it allows us to voice our opinions on a public platform and to connect with people in places that we might never have the opportunity to visit in the real world. Social media has come along and allowed us to reconnect with long lost friends and family, stay in touch with acquaintances who are, situationally, no longer a part of our lives and to even make new friends. I have been blogging and using social media for a few years and in that time I have made a lot of new friendships, some that have extended into the real world and others that have remained online, either becoming more intimate through private means of discussion, or sticking to public forums, only involved in the aspects of one another’s lives that each of us chooses to post online. For me, both kinds of relationships have been fruitful and emotionally rewarding at times.

    There is also that other kind of online relationship. The internet is choc-a-bloc with forums filled with back and forth hate, anger, resentment and provocation. I am in my late 20s and was around when the internet was new and we were all afraid of serial killers finding us and so we posted in any sort of public forum under a pseudonym, now commonly referred to as a username (stupid simplifying language, pseudonym is an awesome word). MySpace wasn’t on the scene yet and most social networking was conducted through forums dedicated to specific topics (like a TV show, or gardening), and through the posts shared and discussed by blogging pioneers. As the years have passed, Facebook has brought social networking to those aged outside the 13-19yrs age bracket, networking sites have popped up to focus on just about any topic you can conceive, Twitter appeared and allows us to send our opinions our into the cyber-ether for whoever cares to follow them and these days, it is often considered odd not to have an online identity. The separation between self and cyber-self has become a smaller gap than existed back in the 1990s, when internet paranoia reigned supreme.

    A lot has been written on the topic of online identity, a quick google surf revealed that the many of these articles are directed toward exposing how one’s online identity can effect their career prospects, as well as reporting the tragic results of cyber-bullying. This recent NY Times article offers advice on combating cyber-bullies, an article that focuses on the technical options available. Block/report/ignore/block/check privacy settings/report/ignore… These are all wonderful things to be able to technically do, but it’s not always that easy to stop the emotional effects of the unwanted attention in the first place, is it? Teenagers are the most prolific sufferers of cyber-bullying, although it does effect people of all ages. In regards to what I have seen personally, it is often those who are new to online interaction that are most affected by negative comments, whether this be because they are young or simply haven’t played in the cyber-playground before. Coming to the internet now, without that lovely sense of 90s paranoia, can mean that someone inadvertently makes themselves emotionally vulnerable, simply because they don’t recognise the ramifications that can come of doing this publicly. I like to think of posting online as akin to walking through the streets, proclaiming something through a megaphone – you just don’t know who’s listening.

    20100823 Historical Classroom
    (click for source)

    It’s a mistake to confuse the internet with the schoolyard, even though lots of your old or current school buddies might be milling about here. People in the online world have no responsibility to you or for your feelings and there’s no teacher you can go dobbing to if they upset you. Just like the schoolyard, though, there are going to be people who you will get along fine with, people with the potential to be your best friend and people that you just plain aren’t going to like or aren’t going to like you.

    When someone chooses to offer positivity, these online connections are a spectacular thing, however, hang around for a while and you are bound to encounter those who choose to offer negativity and criticism. Most of the time, this is a reflection of what is happening in their own lives, rather than a meaningful comment on your own. A healthy separation of real world self and online self is important when diving into the cyber-pool. This doesn’t mean that you are presenting a ‘fake’ personality, this just means choosing which parts of your life you care to make public and considering how you will feel if someone chooses to react negatively to what you have written or posted. If you only share thoughts that you truly believe in, or truly want feedback on, there is less chance that people will be able to use them to hurt you. Some might try, but their opinion can’t break you if you feel happy in your perspective and also understand that it’s not always your job to try and change theirs. You always have the choice not to respond to a comment or an email, not to follow someone’s blog, or not to be their Facebook friend. This is the way in which you can continue shaping your cyber-world to your personal tastes.

    I take everything that I read on the internet with a grain of salt, until evidenced otherwise, including the people that I meet. If somebody that I have interacted with online suddenly displays behaviour that I find distasteful, I can be somewhat disappointed, but I choose to move on and continue to focus on the relationships that I am enjoying. I find it can be beneficial to confront the person who I disagree with, but not to continue arguing if it becomes clear that we simply have opposing views. By discussing an issue openly, rather than getting upset and passive aggressive, I have come to understand and get to know people with whom I have gotten off on the wrong foot. Surprisingly, to me, some of these relationships have actually blossomed beautifully and I have to believe this is because we have established an open dialogue from the beginning. It has not always been easy to not take things personally, but the more I practise it, the better I get. I love that the world is full of diverse opinions and one of the benefits of expressing mine on a blog is that I often get to hear really different points of view. I don’t believe that there is anything more enlightening than a new perspective, even if it simply reaffirms that I truly do believe something that I already thought I believed. Self discovery is a wonderful thing.

    There are a lot of how-to lists floating around on the subject of using social media. Personally, I think it all boils down to two things: conducting yourself with integrity and always understanding that there are going to be points of view that you disagree with. I think there is an opportunity for learning any time I find myself reading something aggressively directed toward me or that I simply don’t agree with. Why does it upset me? Because they have attacked me. No, really, why? The truth can hurt, usually if somebody upsets me, it’s because they have triggered somewhere in myself where I feel insufficient in some way. For example, I was an overweight teenager (I’m still not Miss Thinny-Thin-Thin, but it no longer bothers me), as a result, the most offending thing anyone could call me was ‘fat’. Back then I thought differently, but I can see now that this upset wasn’t because it was of no right of theirs to comment on my weight (even if it wasn’t), the hurt was felt because I really didn’t want to be overweight, I just hadn’t quite mentally gotten to a place where I could figure out how to not be that yet.

    The best way to avoid getting hurt by people on the internet is to remember that you are on the internet. Even within the privacy of a private account somewhere, you are on the internet. There are a lot of amazing people expressing thoughts on here, there are a lot of opportunities for friendship, learning and growth, but there are also a few shadows to watch out for and opinionated cyber-lurkers dwelling there, who believe that criticising others will ease their own suffering in some way. Sure, I believe it’s twisted to think that hurting other people will make one superior, or more knowledgeable, or stronger, or happier, but unfortunately not everyone is aware of their ability to see things from a different perspective to their own. For some, their own perspective is all they care to know and if you find that their perspective isn’t helpful to your own existence, ignore them and move on, but try not to cry yourself to sleep, on account of this is the internet. Alternative perspectives might offer something new to you, something you hadn’t seen before, other times it might even be a snapshot into how you have personally viewed things in the past, or they might offer you nothing at all, but they are never more than simply someone else’s opinion and you never have to allow them to anger you. I repeat: If you only share thoughts that you truly believe in, or truly want feedback on, there is less chance that people will be able to use them to hurt you.

    And now I shall leave you, Audy, to ponder the wisdom of Jack Handey, in relation to what I have been writing about:

    “Instead of having “answers” on a math test, they should just call
    them “impressions,” and if you got a different “impression,” so what, can’t we all be brothers?”

    “I bet when the Neanderthal kids would make a snowman, someone would always end up saying, “Don’t forget the thick, heavy brows.” Then they would all get embarrassed because they remembered they had the big hunky brows too, and they’d get mad and eat the snowman.”

    “If you’re robbing a bank and you’re pants fall down, I think it’s okay to laugh and to let the hostages laugh too, because, come on, life is funny.”

    Love & Musings,

    P.S. Just for fun and the love of Jack Handey, one more: ‘The wise man can pick up a grain of sand and envision a whole universe. But the stupid man will just lay down on some seaweed and roll around until he’s completely draped in it. Then he’ll standup and go, “Hey, I’m Vine Man.””

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  • More Than Words… #BloggersWithoutMakeup, Cause There’s Real People Under All Those Toxins

    Dear Audy,

    It’s not that often that a hashtag on Twitter will catch my eye in a good way, other than when they are related to tv shows. Today I became rather intrigued, however, when I saw a bunch of naked faces appearing in my stream, next to the tag #BloggersWithoutMakeup. How marvelous, I thought, I can actually see what these people that I interact with through blogs and Twitter actually look like!

    Provided with a link from the helpful Thea, I found myself reading a thought provoking post on a blog that was new to me Mummy Mayhem.

    I’m not a person that is hugely into caring about whether the media portrays women as ‘real’ or not, I just kind of expect that we’ll always be given aesthetically pleasing people to look at on the screen and in magazines and I’m kind of ok with that. Those mediums depend on sales and the (sometimes harsh) truth is that people like to look at pretty people. Personally, I like to look at healthy people, neither the super skinny nor unnecessarily overweight appeal to me. Blogging, however, is a different world. I follow blogs because I like the people who write them, not a fabricated image of that person. Personal blogs that come across as too constructed don’t really interest me. I interact with a lot of people online and many of them are not even a face to me, just a username and a profile picture of a cartoon/landscape/pet/trampoline. It has never before occurred to me that I have images in my mind of people that are not images of people at all, how can I possibly know someone when their name comes attached to an image of an illustrated cupcake?

    20100514 BloggersWithoutMakeup

    This is what I look like most of the time, except for the attempted smile, that was just showing off for the camera. I would have given you a real smile, except that my face won’t move like that right now, it seems to think it was jackhammered by the dentist yesterday and isn’t being at all nice to me today. Thankfully, drugs work on this pain to a much higher degree than a regular, burny CRPS flare.

    I have always tried to keep my blog as glossless as possible. I am trying to share what it is like to live with a chronic illness and the truth is that things are not always pretty. I have posted plenty of pictures, even videos, of myself looking like utter crap because that is the truth of what is happening at the time. I decided quite some time ago that I wasn’t going to stress over my appearance for others anymore. I think that it’s one of those ‘growing up’ realisations that most people come to at some point in their life. These days, if I’m wearing makeup it’s because I want to, because I feel like dressing up and feeling different to normal, not because I’m worried of what others will think of me if I go out all naked in the face. The truth is, I mostly go out all naked in the face! Makeup is kind of like evening wear for me.

    Lately, I have been thinking a lot about the amount of chemicals that we put on our bodies every day without even stopping to consider how they could be affecting us. Soaps, moisturisers, makeup, perfume, and then we clean with chemicals, wear clothes washed with chemicals…the list goes on and on. Until I read this post by Jeanne on Chronic Healing, I had never really considered that the chemicals one person puts on their body might also affect those around them with sensitivities. Since this stuff has been bouncing around my brain, I have been attempting to cut out the amount of chemicals that I expose myself too. I figure, it’s bad enough that I need to take daily medication, I should try and limit other kinds of chemical exposure where I can, just because it really isn’t much more work than not limiting it! One thing that people often don’t realise is that, along with pain sensitivity, comes a whole bunch of other sensitivities. I am sensitive to just about everything, light, heat, emotions – both mine and other people’s, scent, air pressure changes…it’s another lengthy list and I’d rather not add to it by creating more sensitivities through exposure.

    I have been switching my skin and haircare products for organic ones, lucky for me I have a friend who runs an amazing online store, Pukka Skincare, so I didn’t have to ponder over where to find products. Pukka stocks a bunch of organic and Australian made products and that is just what I was after. The makeup collection switch will be next. Being that I don’t wear it all that often, I plan to turf most of what I currently have and replace with better quality, less toxic and fewer products.

    I think that having all this on my mind is what attracted me to joining the other #BloggersWithoutMakeup. Whilst I think that the promoting the concept of not being ashamed of one’s own appearance is worthy on its own, I also wanted to invite you to have a think about what I’ve been thinking about…can all these chemicals in modern day life be good for us? I mean, humans did manage to evolve all the way from apes without them. Whilst better quality, organic products might cost a little more, I think it’s worth it not to be covering myself with chemicals whose names I can’t even pronounce!

    Love & Naked Faces,

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  • Careful, Your Desperation Is Showing.

    Dear Audy,

    The internet is a funny old place, isn’t it? Well, funny new place would be more accurate. People rise to and fall from fame within weeks, sometimes days, even hours. Fads come and go, new topics are spread like bushfires seconds after a reliable, or not so reliable source ignites the spark. Musicians find record deals and get discovered by the likes of Michael Jackson on Myspace (eg: Lily Allen, Orianthi). Then there’s the story of Heather B. Armstrong, a blogger who gained notoriety by getting fired for writing about her employment, back when blogging was new, and who now has a large enough audience to generate an income that means she no longer needs an employer. As a professional blogger, she’s living the dream of many. (Heather’s Blog – Dooce).

    20200126 Skirt Blown Up
    Windy Airfield by parang

    This instant fame phenomenon leaves a lot of people wondering how they can get in on the action. When I began my blog, I was just like everyone else. Consciously I was writing to raise awareness about CRPS not questing for fame, but, I must be honest, the idea was there in the back of my mind, ‘Wouldn’t it be wonderful if millions of people started reading my blog?’. I posted my link wherever I could, joined blogging networks and kept writing and even doing activities, thinking the whole time about how I would write about them later. I was newly diagnosed with CRPS and thought that the more attention I got, the more awareness I could raise about my condition.

    As my CRPS worsened, I found myself caring less and less about who was reading, I started writing for me and to share with the people close to me. Spreading awareness to the people close to me is what helps me on a daily basis, spreading awareness to the masses uses a lot of energy and most of the time I need that energy to get through the days. From the moment I stopped allowing the number of readers to dictate my emotions, I found my writing flowing much more easily. Since I stopped trying to persuade people to read my writing and started going out there and reading theirs for my own interest, I have found many amazing people to interact with. If you take the time to go and get to know someone else through their writing, not only will you learn something and possibly make a new friend, but they are much more likely to want to get to know you than if you simply beg them to click on your links. Like everyone, I’ve come across people who don’t like me or simply aren’t interested in what I have to say, even some who have abused me for my writing, however I think that one has to accept that this is par for the course with online socialising. For every human gem you meet, you will probably have to sift through fifty robots and morons.

    This desperation to be noticed is often bred from insecurity and people allowing their sense of self worth to be dictated by what other people think. Let me tell you a story: A friend, who shall remain nameless (we’ll call her Fred), was recently put into a tough situation by an online associate (We’ll call her Lyn). The nominations for a writing competition were announced and when she wasn’t nominated, Lyn chose to write a passive aggressive email to everyone involved in their group and express her disappointment that her friends must not have voted for her, being that Fred had won the nomination over her. The email caused an uproar that saw some members attempting to inflame Lyn’s anger and create distrust, possibly for their own amusement, possibly because they are psychotic sensationalists. My point in mentioning this story is that Lyn’s desperate plea for validation, her need for people to not only like her, but value her work above all others has completely destroyed the joy that should have been Fred’s after her achievement. Lyn’s public whining inadvertently caused hurt and upset for someone completely innocent of any wrongdoing.

    This case got me thinking about how often I see people pleading for others to like them, pleading for readers and pleading for followers (the Twitter kind). There is a huge difference between respectable self promotion and flat out desperation. There is a difference between letting people know you have published some writing and demanding that they read it and respond to it. The more I see someone demanding attention, the less likely I am to feel inclined to give it to them. It was my feelings about other people’s desperation that made me sit and consider my own. Of course, I love it when people do read my blog, but I try to limit the amount of time I spend sending them links. It’s occurred to me that I’m not here to make money, I’m here to communicate and so I am less interested in generating traffic and more interesting in generating interesting interaction.

    To all the Lyn’s out there I say this: “Trust me, we can see the desperation and it isn’t making you any better at what you do.”

    To Everyone, I say: “The only person who can validate you is you. Try believing you are worth something. Give not caring about others opinions a go, you might discover that you don’t really like the things you thought you did, you might discover that you were following trends for the sake of it without even realising it. Spend some time thinking about your core values and what makes you smile, it’s a faster route to happiness than expecting others to provide your giddy emotion fix.”

    Love & Pondering,

    P.S. Happy Australia Day! I wrote this article type post to keep me distracted from a vicious flare. VICIOUS. Pretty much, from my ears to my toes is burning. If you are inclined to and wouldn’t mind sending a little thought to the powers that be to cut this out, I would be much obliged.

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