Tag Archives: CRPS Awareness Month

How To Take Time Out From Unrelenting Pain

Dear Audy,

I’m substituting one of the bonus prompts for today’s NHBPM post: How do you take time for yourself? I’m spicing that up with a little bit of: How do you have fun?

Occasionally, I do get out.



Living with chronic pain is a 24/7 job. One of those crappy jobs that they make consider-yourself-lucky TV shows about.

There’s no going home at the end of the day. There are no weekends. There’s no time off for public holidays, or family events, not even for Christmas. There’s no understanding that this event won’t wait or be repeated when you’re feeling better. There’s no allowance for the effort that you’ve put into organisation, no reward for your hard work, no promotions.

Management of severe conditions like Complex Regional Pain Syndrome is something that can’t be shoved to the side for a few hours without repercussions. Functioning around CRPS symptoms is like the delicate dance of a rhythmic gymnast; balance can be difficult to maintain as you manoeuvre through the hoops of daily life. If you happen to drop the ball…well, it’s all over for you and that tournament is lost. Time to temporarily retire, resuscitate your resilience and prepare to return to the competition floor when your strength is rejuvenated.

Sheesh, Caf, chronic pain sounds so bleak and consuming, how do you ever have a good time at all?

Good times can come with a hefty cost for people living in chronic pain. Going out for a few hours can rapidly consume the energy that you’ve been saving up for a week and suck up the strength for the next week as well. Having fun is an important part of being a person and one that it’s not healthy to sacrifice completely.

Figuring out when it’s OK to still have fun can be an unexpectedly difficult part of adjusting to life with chronic illness.


Anybody who lives with chronic pain is familiar with the occasional need to exhaust ourselves to the point of painful consequence in order to participate in something that we love to do. Pacing is a wonderful pain management tool, however not everything can be done in parts, or over time, and having fun sometimes means throwing measured steps to the wind and preparing to manage the fallout later. That’s future Caf’s problem.

Of course, it’s important to employ all techniques that you can to try and lessen the pain of going out to have a good time. Different people will have different requirements in this department. For me, being prepared to party can include things like packing The Fonz (my wheelchair), napping during the day, extra Feldenkrais before and after, breathing deeply and letting go of any physical tension that I can find lurking in my body.

There’s also a bit of mental preparation if I’m going to be chatting to people, or in a crowded place. Everybody has energy and my heightened sensitivity means that sometimes I can feel far more of it than I’d like to. It’s kind of like when super heroes can read minds, but then they go crazy because they can hear everybody’s thoughts and they can’t ever turn it off… but less dramatic.

I can’t fight that energy off, but I can allow it to flow without getting annoyed at it and causing it to clog up my own aura…or whatever. Before I had realised that external energy was affecting me, I just put the ramifications I was feeling down to regular pain and fatigue, which didn’t give me any power in overcoming those symptoms. Being mindful of energy helps me to not be affected by it and that’s one of the neatest tricks that mindfulness knows how to play.

But what about ME time?

Taking time out to look after our hearts and souls can be one of the toughest things to do when living with chronic pain.


How do you differentiate between pain management (caring for oneself) and just relaxing (also, caring for oneself)?
How do you relax when you’re always reclining anyway?
How do you pamper yourself when you can hardly stand to have anything touching you?
How do you actually be lazy when everybody thinks that you’re just being lazy all the time?


It’s all a mental game. The only way for me to take a break from CRPS is to decide to take a break and line up all my little ducks so that I have the best chance to do so. When I want to mentally check out for a while, I have to get mindful about it.

The way I see it, never not thinking about your pain, or about managing your pain, is a form of anxiety. It makes sense to use anxiety fighting tools to help propel yourself into a holiday-like headspace.


It might sound corny, but the first thing I need to do is give myself permission to take a break. You, Caf, you have permission to rest, you are now allowed to relax.

Just like planning a vacation, it can be helpful to offer up this permission with a date and time. You have to do this and that now, Caf, but Sunday morning you don’t have to do anything and you are allowed to relax then.

Preparedness is reported to be a boy scout’s best friend and whilst I’m both a girl and extremely un-scout-like, preparedness seems to accept me as one of its buddies anyway. I can prepare to relax by pursuing active pain management techniques before I sit down. Do your Feldenkrais first, Caf, then the need to be doing it won’t be niggling at you while you get lost in the fabulous television world of Nashville.

The hardest thing about relaxing is the not-worrying part. You know that, Audy, even those of you who don’t suffer from chronic pain.

Sometimes it can help to write down the things that are currently bouncing about in my busy mind. This helps to solidify worries that will genuinely need attention later and also by bringing these thoughts to the front of my conscious mind so that if they pop up during relaxation time, then I can recognise them and remember that it’s alright to ignore that thought until later. That’s not a pressing concern, Caf, it’s been noted and you’ll deal with it at that time that you decided upon.

Worries would have you believe that they can’t be put on hold, that they’re too important to wait until later, but it’s all lies. Worries are in your mind, sometimes acting on them is necessary and sometimes it’s impossible. In order to take a break from worrying, you have to put some effort into recognising the nature of your worries and learn how to let go when they are only being a hindrance.


Once you get through all this permission giving and recognising of the need to take some time out, it can be hard to think of something fun that you can do within your physical capabilities. I count learning to recognise joy, beauty, and even fun where I’d not seen it before, amongst the bittersweet gifts that CRPS has given me.

Well, not a gift exactly, more like a drop you in the middle of the jungle and you survive if you do and sayonara if you don’t… forcible lesson, but a valuable one just the same.

I’ve learnt to have a greater appreciation for what I am physically feeling when I enjoy something.

Does it get adrenaline running? Focus on the physical sensation of that and you can immediately magnify it through the simple application of attention.

Does it make make me laugh? Really laugh, really appreciate that feeling.

Does it fill me with so much anticipation that I literally shake? Just enjoy that, just you keep on obsessively loving the thrilling tale of The Walking Dead, Caf. Don’t forget to breathe.

Television shows, or movies that I enjoy can be a wonderful way for me to take a break. It’s an easy way to take my mind to another world, to get lost in the colours, sounds and stories there. Also, watching them is unlikely to increase my pain levels. Books house a similar escape, albeit one that requires a little more concentration on my behalf. Reading blogs can require less effort, but still engage my mind for long enough that it gets a little break from its regular programming, or maybe even learns something new.

Crafty pursuits can be a saviour when I want to give my mind a rest, but can’t seem to stop the unwanted thoughts from circulating. Sewing, drawing or painting can absorb me completely within their colours, shapes and methodical application.

Craft can be a great method to shift from wordy, anxious thinking, to a place of abstract freedom. It really has nothing to do with whether or not the fruits of your labour turn out how you’d like them to. Do stuff you’re not good at, opening up to learning is a wonderful distraction in itself.


Everybody has their own things that they do that make them feel a little bit better for whatever reason. The most important part of ME time is figuring out what those things are for you, or recognising them when they aren’t necessarily the activities you’d been expecting. Who knew you had a talent for knitting? Who knew that you enjoyed singing? Who knew that nail polish could make you feel better?

I like to think that there is never a reason for me to stay down in the dumps. Holding onto this simple thought helps me to keep searching for ways back when I get lost in the land of not coping. It can take weeks for me to find a way back, or even months. It can also help me to snap back within minutes on some blessed occasions.

It’s too easy to give in to my feelings of depression and listen when they tell me that I can’t do anything fun anymore. Fighting for enjoyment is much more difficult than accepting an absence of it. Fighting is risky business and sometimes, I lose. It’s always worth it, however, because every time I win, this life with chronic pain gets a little bit lighter.

How do you have fun, or take time out for yourself?


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 & Giggle Breaks,

Caf
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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  • Health Activist Award Nominations & Half Way Through My Blogging Challenge Celebrations

    Dear Audy,

    Today’s NHBPM challenge is to nominate bloggers for WEGO’s Health Activist 2012 Awards. I’m really glad this was included in the prompts, because blogging every day is exhausting and I’m not sure I would have remembered to submit nominations if not explicitly “given” the time.

    Want to nominate your favourite health bloggers?! CLICK HERE
    (opens in a new tab, I’ll still be here when you’re done)


    There are too many brilliant bloggers who live with chronic pain and illness for me to list them all here. I’m a bit paranoid about leaving somebody out. I can’t seem to manage to play favourites; ranking things often makes me feel a bit silly. I even struggle to rate music in my personal iTunes collection, it could be said that my star system is not very systematic at all.

    Sometimes, I just like to like stuff without that being relative to how much I like other stuff.
    How do you quantify amount of liking anyway?


    Here is a list of the whys I used to nominate the blogs that I managed to choose:

  • Honesty. Truth really is the most moving thing that a blogger can offer.
  • Skill. Most people can write, however writing well is a special skill. I appreciate few things as much as I appreciate an image that is perfectly constructed out of words.
  • Determination. It’s the focused bloggers that reach the furthest and the ones that push on through hard times that inspire me to do the same.
  • Being engaging. I love blogs that make me want to read properly and not just skim.
  • Check out the NHBPM Facebook event where you can find an awesome (what’s the collective noun for bloggers?) Whatever it is, there’s an amazing one of those on the other end of this link.

    Day 15 also marks the half way point for this 30 posts in 30 days challenge. Here’s a quick video update about how I’ve been coping with blogging every day and still managing my CRPS.



    Do you have trouble playing favourites, Audy? What are some of the blogs that help you to cope with chronic pain or illness? Don’t just tell me, go nominate them!


    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 & A Half-way Dance,
    Caf

    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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  • 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,
    Caf

    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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  • In Review: The Brain That Changes Itself by Norman Doidge

    Dear Audy,

    The Brain That Changes Itself has been my favourite book for some time now. Younger, novel devouring me would never have believed that one day I would come to love a non-fiction book more than all the others, but that’s where I find myself. Today I read to learn far more often than I read for escape.

    The Brain That Changes Itself completely opened my mind to new and amazing ideas. It enlightened me as to the previously misunderstood workings of my brain and to the hope that comes from recognising infinite possibility.

    It’s been a while since I’ve read thoroughly through the pages, this review will be focused on what I’ve learnt from reading it, what I’ve retained several years later and how the information has effected my life with Complex Regional Pain Syndrome.

    Click image for source



    First published in 2007, The Brain That Changes Itself has made an impact on many people. This is a big achievement for a science-type book, many of them are inaccessible through all of the jargon. Norman Doidge, however, has managed to bring together inspiring stories from the world of brain science and communicate them in a way that is easy for readers to understand.

    This book approaches its topic from the angle of sharing personal stories. The byline reads: Stories of Personal Triumph from the Frontiers of Brain Science – and that’s exactly what you’ll find inside.

    There are stories about people with issues such as brain damage, stroke, anxiety and phantom limb pain. Sometimes, the way that we figure out how something works is by studying what happens in the cases that it doesn’t work. In the instance of the brain, a lot can be learned by looking at how the brain copes with or recovers from injury.

    Some of the most inspiring stories in The Brain That Changes Itself are those about people recovering from strokes (a situation in which parts of the brain no longer work at all) and also those about people that have re-wired their brains around actual missing tissue, that is, part of their brain is physically absent due to injury or development issues.

    If a brain that has missing parts can learn to work around the gaps, then surely a brain that has all its parts, but is misfiring, can learn how to function harmoniously again!

    Possibility is powerful.

    Neuroplasticity was long considered a dirty word. Many revolted against the notion that the brain is constantly rearranging as it processes and learns. Many interpreted the discussion of neuroplasticity as some sort of victim blaming, although that really has nothing to do with it. I’ve written about neuroplasticity before, in relation to depression and received some rather passionate responses from people who chose not to accept my opinion or were blatantly outraged by me blogging about it.

    Neuroplasticity is not an airy-fairy term for a method or a psychological work process, it’s a bodily function akin to “digestion” or “circulation”, it’s just been more freshly labelled.


    When a person attempts to improve their situation by practising mindfulness or meditation, they are attempting to incite neuroplasticity. When a person reads a book or a news article or watches a report on the television, everything that they learn and retain from that experience is evidence of neuroplasticity.

    Learning itself is one of the most obvious forms of neuroplasticity and one of the easiest to understand.

    Your brain doesn’t have a little hard drive marked “Memory” where you deposit your experiences like files into folder.


    That concept sounds a little bit ridiculous as I’ve written it here, however it is a very common misunderstanding of how memory works (it’s the vague comprehension that I had before life forced me to study further).

    Memory, along with every other process in your body, works by creating connections between neurons in the brain. These create a complex pattern that is often referred to as a “brain map”.

    When you give a thumbs up, there is a specific brain map of synaptic impulses that connect so that you can create that movement. This brain map is unique to you, despite similarities across people. A brain map is the product of each person’s individual experiences with both external stimuli and internal interpretation.

    Reading The Brain That Changes Itself helped me to to understand the value of individual case studies when it comes to neurological research. There is a fabulous quote from the man that Doidge refers to as the Sherlock Holmes of modern neurology, V.S. Ramachandran:

    “Imagine I were to present a pig to a skeptical scientist, insisting it could speak English, then waved my hand, and the pig spoke English. Would it really make sense for the skeptic to argue, ‘But that is just one pig, Ramachandran. Show me another, and I might believe you!’”
    -V.S. Ramachandran, quoted in The Brain That Changes Itself


    Stories of individual accomplishment will never fit the scientific method, but they are nonetheless incredibly valuable in the field of neuroscience. To be proven by science, something must be able to be hypothesised, tested and have results that will repeat if the same method were to be re-followed.

    People aren’t always like that. Brains aren’t like that, they’re the most intelligent parts of our bodies and it shouldn’t be a surprise that they are the most difficult part to understand. We are trying to decipher our brains, using our brains. This was never going to be easy.

    There is a chapter in The Brain That Changes Itself that is all about pain, specifically phantom limb pain, which is not all that different to chronic pain in the absence of injury. A confused nervous system is a confused nervous system.

    “Normal pain, ‘acute pain’, alerts us to injury or disease by sending a signal to the brain, saying, ‘This is where you are hurt – attend to it.’ But sometimes an injury can damage both our bodily tissues and the nerves in our pain systems, resulting in ‘neuropathic pain,’ for which there is no external cause. Our pain maps get damaged and fire incessant false alarms, making us believe the problem is in our body when it is in our brain. Long after the body has healed, the pain system is still firing and the acute pain has developed an afterlife.”
    – from Chapter 7, Pain: The Dark Side of Plasticity, The Brain That Changes Itself


    This isn’t the full story of how chronic pain affects the body, but it’s a great explanation to start with. When describing the stranger symptoms of CRPS, I am usually talking about how the body responds to this “excess firing” over time. In short, the pain system malfunctions for long enough that the brain starts trying to treat symptoms of the ghost injury.

    The idea the brain is always changing can be a hard concept to get one’s head around, especially for those that have grown up with an image of the brain as a machine with certain cogs (physical regions) responsible for each different aspect of its function.

    In some ways, the brain is like a machine and this analogy can be helpful to the education process. The difference between something mechanical and the human brain is that the brain can physically reorganise its parts. The brain can change to adapt to changing circumstances or input. It is not a rigid, one-trick organ, it is a malleable mass of interwoven circuitry. If the brain was a machine, it would be made of plasticine with interlocking parts that could be re-shaped and re-arranged.

    CRPS is difficult to explain and difficult to understand. Reading a lot and across various platforms exposes me to many different ways of thinking, to different ways of approaching healing now that I’ve landed just to the left of medical knowledge. I’ve learnt lessons of epiphanic degrees from hippies, scientists and even slightly crazy people.

    I’ve learnt not to judge information, it’s just existing. Just like trees, birds and bees. Information is not the intent of the person delivering it. Information is not the style of writing of a text, an author’s arrogance, or a concept that appears based in imagination.

    Information is just information. How you understand, interpret and, in some cases, implement information is the important part of learning.


    I’ve learnt that no matter how much I learn, I will never know all that much of anything at all. That’s how much information this world has; that’s how many ways there are to look at things. I’ve learnt not to be attached to my opinions as they are prone to changing, just like everything else.

    I’ve learnt a lot since reading The Brain That Changes Itself. The book inspired me to go and seek out more information. It prompted me to buy more books, to find more stories, more theories. It helped to explain to me how and why chronic pain has been able to grip me so tightly and throw out such confusing symptoms.

    It even inadvertently explained why I find The Feldenkrais Method so helpful – the therapy is a method of strengthening helpful, healthy brain maps.

    The most important thing that it did was give me hope. Hope for my future and for that of neuroscience. Humans are only at the beginning of fully understanding the workings of our brains and there’s so much hope to be had by pondering the things it has left to discover.

    I could write a blog post every day for a year and still find more to write about within this book. I cannot recommend it highly enough.

    What’s your favourite book?


    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 & Grey Matter,
    Caf

    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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  • The Awareness Bracelet Scam Of The 21st Century

    Dear Audy,

    Today NHBPM has challenged me to call BS on something that is ridiculous. This month, I have been trying to raise awareness of Complex Regional Pain Syndrome by participating in this blogging challenge and sharing my stories.

    This might sound a little bit twisted against my efforts, but I’m calling bullshit on awareness bracelets.



    Even the orange or red ones that stand for CRPS, depending on which person who ordered them from a manufacturer that you ask.

    I have actually seen people arguing online about the “right” colour of awareness bracelets for CRPS. These people are experiencing anger, outrage and judging one another based on this ridiculous debate. It’s not like there’s some official board of awareness bracelets ruling on the colours of every cause.

    Just a couple of weeks ago, South Park took on the topic of awareness bracelets with all of its delightfully dark wit. In S16E13 A Scause For Applause, Jesus’ miracles are discredited because it’s revealed that he used performance enhancing drugs (a nod to the Lance Armstrong fiasco). Everybody in America is getting their WWJD (What would Jesus do?) plastic wristbands removed in light of the revelation and faith in the iconic Christian figurehead is dwindling like never before.

    Stan Marsh stands alone in his refusal to remove his wristband – he just likes it. In true media sensationalist fashion, this becomes a movement of people worshipping Stan as a leader of STANding up for what you believe in. Nike features him in a typically ridiculous television ad. His message reaches as far as poverty stricken farmers in Belarus, who are standing against oppression of genocidal proportions.

    However, Stan might not have been a truly truthful hero either. Rumours arise, toting that he hadn’t actually remained STANding for his beliefs the whole time, that he had in fact removed his bracelet and then stuck it back together with superglue. His reign of leadership crashes to a finish, leaving both Stan and Jesus looking for a way to redeem themselves, disguised under a desire to help the people of Belarus.

    This is where the story becomes highly relevant to my point.

    Finding themselves needing to raise awareness, Stan and Jesus realise that, of course, they need awareness bracelets!

    They pay a visit to the Seussian-like P.F. Pityef Bracelet Factory, where a shady-looking, rhyming Seussian greets them with a poem and a Wonka-like factory tour:

    In the modern age there are those who believe
    That a cause is a thing to worn on one’s sleeve
    And so we sell a cause, it’s called a Scause
    And wearing a Scause gets you lots of applause

    We start with some plastic, which is sherped by our sherpas
    And dip it in colours that show off your purpose
    There are green Scauses for recycling, blue Scauses for kitties
    And pink Scauses that focus on nothing but titties

    Do you hate abortion? Ha! Then a white Scause is for you
    Why not champion your Scause with some sparkles and glue?
    We make Scauses for this, we make Scauses for that
    Why, there’s even a Scause for just being fat

    What’s the matter, can’t think of a Scause?
    How about raising awareness for the hairs in your schnoz?
    Let’s just think of the thing that you care about most
    Let’s make it orange, like marmalade toast

    And now I’d like to say thank you for your coming down
    I’m off to go sell these in your little town


    (Click here to watch the clip)

    Awareness bracelets raise nothing but the bank balances of the companies peddling these products using misleading charitable intentions. If you Google “awareness bracelets”, you are not taken to a wonderful world of information, learning, sharing and fundraising. Instead, you will find a bunch of different plastics manufacturers offering to customise bracelets for the Scause (ahem, cause) of your choice. For a price, of course.

    The brilliance of A Scause For A Cause also extends to the link between Lance Armstrong and awareness bracelets. The whole plastic cloaking of wrists for causes began in 2004 with Livestrong, an organisation that was founded by Mr Armstrong for the purpose of raising money to help cure cancer. Livestrong bracelets serve to assist this cause by raising funds and not just awareness, which seems like a fairly valiant undertaking.

    In light of how this endeavour spawned a society of Scauses, let’s not forget that the wristband itself was developed by Nike’s marketing team.

    It was a very successful marketing effort indeed. Awareness bracelets quickly became a fashion accessory, so trendy in fact that one could go to a market stall and buy knock-off awareness bracelets. Yep, knock-offs. They are just coloured plastic or rubber bracelets without even a Scause in sight.

    This isn’t another thing to get angry at Lance for, Society, you just took it too far.

    When was the last time you saw somebody wearing an awareness bracelet, asked about it and were given some information about that cause? When was the last time you thought “Oh, I’ve never seen a wristband that colour before, I’d better find out about that”?


    Because that’s the idea behind these things, that people will spread awareness and through chatting about bracelets. That’s the charitable, purported purpose anyway. The marketing evil genius is a little bit different.

    Nobody wants to seem like a selfish person. Nobody wants to seem like they take their first world riches or their good health for granted. Everybody wants to seem like a good person, or like what they think other people think a good person is.

    Many would define a person who helps others as “good”. Thus, it logically stands that a person who is wearing awareness bracelets is more “good” than a person who isn’t, because everybody can see that they “care”. It’s right there on their arm in bright coloured circles.

    The rising popularity of awareness bracelets has little to do with people caring, it has nothing to do with the actual raising of awareness of anything. It has everything to do with sales, profits and both personal and professional images.

    Some of the wristband wearers don’t even realise that it’s all for show, they don’t even realise that just wearing a band on your arm isn’t helping anything. The band isn’t educating people. The band isn’t sharing information. The band isn’t conducting research. The actual wristband part of your purchase isn’t funding studies, that’s only the role of the sales profit in an ideal situation.

    The band isn’t even raising awareness.

    IT’S NOT EVEN DOING THE ONE THING THAT IT’S SUPPOSED TO DO.

    Awareness bracelet?! That title is a lie. It’s hardly even a bracelet, it’s just a piece of plastic. It’s not the symbol of hope and solidarity that people would like to believe in.

    I’m sorry y’all, but if your wrist is covered in colours, you’ve likely been duped. This isn’t me trying to call you stupid, this is me trying to explain a situation that was set up to mislead you.


    South Park’s Suessian charlatan leaves town with these final words:

    Oh my, it’s the sound! (Butters: What sound?)
    Of all the sounds in all Soundom, this is the most profound
    That’s the sound that means I must pack up my tent
    It’s the sound of the very last cent being spent

    My work here is done and just look at you now
    You’re all covered in Scauses, from your hoof to your brow
    Enjoy all your Scauses, you look great in your cause
    Be sure to give each other lots of applause!


    Remember, the purpose of awareness bracelets isn’t even fundraising in most cases, most of these atrocities are only profiting plastics companies that are cashing in on a trend. This is how capitalism works, it doesn’t abide by morals. You can even buy “awareness bracelets” that just make you aware of words like “Love” and “Strength”, you know, words that you’d have otherwise never heard of.

    Following the scam artist’s departure, Stan says, “It’s almost like that guy had it figured out all along”….ALMOST, INDEED.

    Ok, Caf, OK. So you’re not a fan of awareness bracelets. But HOW are we going to raise awareness without them?!

    Awareness is about knowledge. Raising awareness is the process of spreading information. Raising awareness isn’t about cures, not yet, that comes after enough people have become aware that an issue exists.

    Blogging helps to raise awareness, I wrote about this a few days ago. I know that this works because people write to me and tell me “Hey, I’m aware of CRPS now”.

    Talking and sharing help to raise awareness. Campaigns such as NERVEmber, CRPS Awareness Month and the WEGO Health challenge help to raise awareness. Funded campaigns help to raise more awareness than anything, think of all of those “brought to you by government department” ads. It’s too bad that funding can be hard to come by.

    Every time that somebody learns about CRPS, learns that it exists and that it effects millions of people, that is when awareness is raised. Anything you do that helps to teach people who would otherwise remain ignorant of your message is an awareness raising effort.

    When was the last time a bracelet did that?

    But, Caf, MY awareness wristband DID go toward raising money for my condition!

    Imagine if you simply donated a few dollars directly to the charity of your choice. Imagine if you got nothing in return for your donation, other than knowing that you had contributed. Imagine not wearing your charitableness like a badge of honour on your arm.

    The money would still be going to the right place. All of it. No cents taken out of each sale to cover the manufacturing costs of a bunch of plastic rings. No sense taken out of your charitable efforts by the sly hands of capitalism.

    That’s what a donation is. Donating in exchange for goods is just purchasing. Part of the awareness bracelet scam is having people believe that they could not financially contribute without there being a token for them to receive in return.

    As for your token of donation raising awareness… Are you still convinced that it does that at all?

    Cartoon Jesus sums it all up perfectly:

    So, what have we learned from this great wristband theft?
    Maybe that when stripped of our Scauses, only causes are left
    Causes shouldn’t be worn on our wrists with a sneer
    Let’s keep our causes where they belong, which is right here

    *points to his heart, rips open his top*

    On t-shirts.

    FREE PUSSY RIOT.


    He’s got his tongue in his cheek, but I have to agree with cartoon Jesus on this one. T-shirts are much more effective at sending a message than tiny plastic strips. T-shirts have infinite possibilities for customisation, can share snippets of information or directions to websites that hold a plethora of informative stuff.

    T-shirts are also something that people are going to wear anyway. For many, they are the only items of fabric between their nipples and the world. T-shirts are walking billboards, just waiting to tell people things, be that something important or just the name of the manufacturer. T-shirts are so common and variable that it’s actually interesting to look at ones that we haven’t seen before, to appreciate designs that catch our eyes.

    T-shirts are so good at sending messages that they don’t even call themselves “Awareness T-shirts”, they just inherently spread information.


    In comparison to the reach of t-shirt signage, awareness wristbands are the tiny bits of text hiding in the corner of a billboard. Only the dedicated readers will find them. They’re the fine print, the asterisked points beside an advertisement. They’re the stuff that has to be said for legal purposes, but that nobody cares about.

    What do you think about awareness bracelets?


    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 & Lid Popping,
    Caf


    P.S. Thank you, South Park. Thank you for your being continually awesome throughout half of my life.

    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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  • The Loveliest Little Helpers

    Dear Audy,

    Today’s prompt for NHBPM is to write about something that is not health related but improves your life. This is an odd topic to think about because so much of my life revolves around my health, however a visit and some words of wisdom from a friend helped me to understand what this means.

    Everything that improves health improves my life, but things that improve my life can also improve my health. Stress can have a huge influence on malfunctioning nervous systems and things that reduce stress can help to improve symptoms.

    Things like these guys.

    Maltese Shih Tzu Beagle Cavlier

    Dogs are some of the best people.




    When I first developed CRPS, I was living in a tiny, second floor flat near the city. This was an awesome place to live when I was working and socialising. It was the perfect club house for being young and adventurous.

    The flat changed shape as my condition worsened. All of a sudden, I was stuck in those small rooms all of the time. Instead of a hub of independent living, my flat became a prison cell. Going anywhere was precarious, because the only way in an out of that flat was via a staircase. I couldn’t drive or tolerate being on a tram, so the only excursions that I went on were being driven to and from medical appointments.

    It sucked like a vampire on a vein.

    As my CRPS spread and general ability to do things lessened, it became obvious that I needed to move back to the suburbs and closer to my family. I just needed more support. There were too many appointments to attend, too many nights when I was stressed about how to get food.

    Suburban life wasn’t what I was hoping for as a 25 year old, I was way more interested in being close to city life, friends and things to do. The sad reality was that, despite being locationally close, I couldn’t do a lot of the things that I wanted to anyway. It was a hard pill to swallow, somewhat thicker and more stubborn than the handful of pain meds that I was taking per day back then.

    Little did I know, a little white knight was on his way to brighten my world. This is Sammy.



    Sammy belonged to family who were unable to look after him any longer. He needed a home and I needed the company. We were a perfect match.

    Not long after adopting my fluffy little buddy, I learned that a good friend had also found themselves in the circumstance of needing to re-home an adorable canine. It didn’t take much thought for me to want to welcome her into our little pack. This is Lucy.



    Sammy and Lucy got along right from the get go. It probably helped that Sammy thought she was a bit of alright but didn’t have the skills to do anything about it and thanks to some behavioural issues and a trip to the vet, no longer can. It’s OK, he still thinks she’s pretty ace.

    As long as she’s not stealing his pats. Neither of them are particularly fond of the other receiving human attention, but Sammy is the most likely to hilariously dance around and put on a show in protest.

    One of the best things about living with dogs is how often they make you laugh. They’re like furry little comedians. As you get to know a dog, you quickly learn how much personality each of them has and just how loveable those individual traits can be. It’s funny when they do things that are just so them and also funny when they surprise you by acting completely out of character.

    Laughing is good for everybody!

    Dogs pick up on when people aren’t feeling so good and they often have cuddles ready and waiting to help. I can’t tell you how many times I have curled up with Sammy, or Lucy, or both of them and just cuddled my way through a rough patch.

    You can also learn a lot from your dogs. In a lot of ways, my dogs are smarter than me.

  • My dogs never worry about things that aren’t important. Except thunder, but that’s not Sammy’s fault, if you were just little you might think that the sky yelling at you was cause for alarm too.
  • My dogs never stay in uncomfortable positions for too long, or move in ways that are disrupting to their skeletons. Lucy has some arthritis, probably some chronic pain, but she doesn’t let it get in the way of her loving the things that she loves.
  • My dogs are always happy to see me, they never let upsetting stuff get in the way of them enjoying the present moment.
  • My dogs don’t want much at all and they thoroughly appreciate everything that they get. You haven’t seen real excitement until you’ve seen Lucy anticipating a tasty treat. She actually shakes with how very thrilled she is, through every fibre of her being, it’s adorable.
  • My dogs love to exercise. Going for a walk is Sammy’s absolute favourite thing to do and Lucy’s second favourite. They don’t even want to go far, or to fancy places, they simply want to go and check out the stuff that is right in front of them, whatever that might be.
  • My dogs are masters of mindfulness.


  • At the time, moving back to the suburbs seemed like failing at life, but the universe loves to surprise us when we least expect it. Looking after my dogs has helped me in so many ways, through all the things that I learn from them and by allowing me to be needed and useful in another being’s life. They even helped to stop me going off the deep end; before I had dogs I was talking to far too many inanimate, household objects.

    Occasionally, I feel guilty because CRPS gets in the way of me being able to take them out for walks as often as I’d like. Thankfully, we also live with a lovely man that can usually walk them when I can’t. If it’s just an unfortunate day and there are to be no walks, they help me to work through any guilty feelings with cuddles.

    You’d be surprised how many problems can be solved with cuddles.

    Do pets help you to cope with chronic pain or illness? I’d love to hear about them! Please feel free to take a moment to gush about your gorgeous little guys and gals.


    Love & Woofs,
    Caf

    P.S. Evening writing is weird, yo! Today had things in it that meant I couldn’t write my post in the earlier and more caffeinated hours of the day. Quite proud of myself for pulling this one out at the eleventh hour. NHBPM is helping me stretch myself and achieve more than I thought I could. Tune in tomorrow when I’ll be calling BS on something ridiculous! x

    For those just joining me, here are some quick links to my NHBPM contributions so far:

    Why I Write About My Health
    When Health Is Weird
    You Need To See A Psychiatrist
    Disclosure & Chronic Pain: How Much Is Too Much?
    What About The People With Chronic Pain, Government?
    Extra! Extra! (video post)
    What Mindfulness Means To Me
    Dear Body, I’m Sorry
    When Happy Memories Hurt
    Is Posting About Health On Facebook OK?

    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,
    Caf

    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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  • When Happy Memories Hurt

    Dear Audy,

    Have I really made it to my 9th NHBPM post? Well, hot damn. Let’s keep going. Today, I’m writing about memories.

    When living with CRPS, there is a lot of down time and not always a lot of new stimulation. This can leave a person with little else to do, other than go over their thoughts and memories.

    Sometimes, this can be a pleasant escape. A visit to happier times. Yet, other times it’s these happy memories that sting the most.

    The reasoning for this is easily summarised in two words: never again. All of my pleasant memories from before I developed CRPS are of a person with a healthy body (mostly). She dances, that person, she runs and she giggles and she plays. Oh, how she plays.

    Rellacafa

    She even does leg mounts in the ocean, apparently.



    I remember learning to run. I was an adult before I realised that this was something that I still needed to do, I’d never been very good at it. I’d certainly never enjoyed it.

    Like everything we can learn to do, I just needed to practise. I was so very self conscious, I didn’t want anybody to see me trying to run. I was embarrassed to be a running fat person. Hindsight has taught me that I should have been taking pride in my progression.

    We all learn not to care what other people think at our own pace.

    It was only when I was alone in the peaceful, familiar and much loved Australian bush that I found the courage to try. It started with little walk/run alternations. I would have been lucky to run twenty metres in the beginning. It felt awful, it took all the motivation I could find to push myself to keep practising.

    Slowly, my legs strengthened and I learned more efficient ways of breathing. It’s amazing how much in life comes down to breathing in different ways – and there are so many different ways.

    Soon, I was running more than I was walking and it felt good. I felt like a winner. It felt amazing. I learned to love the burn in my calves, the burn in my lungs, the burn of the sun on my nimble body.

    How funny to realise that it’s burning that gives me so much trouble these days.

    Remembering this now, I can summon that feeling of accomplishment, of happiness. This hasn’t always been possible during the CRPS years.

    A while back, I saw a short clip of the me-that-ran in an old video. I started to cry and could hardly stand to watch.

    I just miss her so much.

    Handling grief is a huge part of learning to live with chronic pain. It turns out that a person can grieve for themselves, can grieve not just for the past but for the person that they were in the past.


    I don’t remember where or when I first discovered or was taught this fact, there was a lot of medication riddling my system in the beginning. I do remember how I felt: enlightened.

    Holy crap, I thought, grief is what I’ve been feeling this whole time.

    Everybody grieves at some point in their lives, it’s a part of the human condition. We love and then, if we lose, we hurt. People experience this emotional process differently, however there is a well known model, the Kübler-Ross model, that describes five major stages of grief: Denial, Anger, Bargaining, Depression and Acceptance.

    Here’s a little insight into how these stages can relate to a person coping with chronic pain:

    Denial

  • I probably don’t even have CRPS at all, this is just a misdiagnosis.
  • CRPS is not that bad, some cases clear up all by themselves within six months.
  • I’ll be back at work just as soon as I’m better.
  • When I’m better, I will do this, that and that other thing.
  • Anger

  • WHY DID THIS HAPPEN TO ME?! WHY NOT SOME MURDERER INSTEAD?
  • WHAT DID I DO TO DESERVE THIS?
  • THESE PILLS AREN’T HELPING! WHY ISN’T ANYTHING HELPING?
  • MEDICAL SCIENCE IS A CROC, DOCTORS DON’T KNOW ANYTHING.
  • Bargaining

  • I’d do so much with my life, if only I could get better.
  • I’d advocate for those who can’t speak for themselves, if only I could be well.
  • I’d eat everything right, exercise every day, if only I could be healthy.
  • I’d be the kindest, nicest, most generous person, if only I could recover.
  • Depression

  • This pain is never going to get any better, it’s going to keep getting worse.
  • I’m just going to suffer and suffer until I die, I wish I was dead already.
  • I’m a burden on everybody who loves me, they’d be better off if I wasn’t here.
  • There’s just no point in trying, this disease is bigger than I am.
  • Acceptance

  • There are therapies that I can use to help manage my pain in the absence of cure.
  • I can live with this pain and be sad about it, or I can try to find a healthier mental perspective.
  • I can keep trying to improve my quality of life and learn to feel calm in spite of physical pain.
  • I can share what I’ve learnt and maybe I can help others who are suffering.
  • Sound familiar, anybody?

    The strangest thing about grieving for oneself is that it never seems to be over. These stages can repeat, cyclically and spontaneously. Sometimes I drop back to depression, sometimes to anger or bargaining. Sometimes I drop all the way back to denial and just curl up in a ball yelling “No! No! No! No! NO!”.

    The steps back to acceptance are still pretty much in line with the five stage model.

    I wonder if I will ever be able to maintain acceptance? I believe that it’s possible. I believe that I am capable. I guess what I really wonder is how long it will take…

    When I am feeling the peace of acceptance, the happy memories stay happy. I can see them for what they are and enjoy looking back on the fun times. I can smile at that person that I used to be, wink at her and share with her the secrets of the past.

    Memories might not be the best place for me to spend time when I’m feeling weak, but when I am strong and in the midst of acceptance, they can show me some of the most beautiful parts of my mind. I wouldn’t give them up for anything.

    Have happy memories ever made you sad, Audy? Have you ever grieved for yourself and the person that you once were?


    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 & Flashbacks,
    Caf
    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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  • Dear Body, I’m Sorry

    Dear Body,

    We’ve been through a lot, you and I. Some of it was wonderful and some of it not so much. I’ve been cruel to you, Body, I’ve blamed you for everything.

    But I need to tell you that I was wrong.

    It makes me sad if I think about how many years I spent hating you for your appearance. I was so naive, so misinformed about the world, so misinformed about what a problem is. How you look has never really mattered, but I’ve only come to realise this because you stopped working.

    You treat me like a prisoner now. You lock me away and spank me with all the corporeal punishment. You burn me, bruise me, then hide your methods and intention within the tangle of your nerves, safe from researching eyes (for now).

    Today, you won’t even let me put pants on.

    Rellacafa

    Come on, CRPS, either let me wear pants or quit with the goosebumps, please!



    But…it’s not fair to blame you, not really. Complex Regional Pain Syndrome attacked both of us, taking out the machine and the controller with one stone.

    I’m pretty hard on you sometimes, but truth be told, CRPS is the real cause of my suffering. I’m hurt by the malfunctioning, not the machine.

    It’s like being possessed. The poltergeist puppeteers both of us with unpredictable malice. It pits us against one another, separates our mind from our physicality and tells us lies.


    But we’re the same being, you and I. We’re in this together. I’m trying not to blame you anymore, because when I do that, I’m only hindering myself. You’re a part of me and I’m going to need you if we’re going to exorcise this demon.

    Blaming you for my life situation is like blaming a person for picking up an infection, rather than holding accountable the infectious disease.

    CRPS is complex (I mean, that’s in its title FFS) and the cause is unknown. What is known about this condition are many ways that a body can react or show symptoms, I guess that’s why it felt like you were the problem. You have this amazing ability to rewire your circuits, to reform your brain (our brain) and CRPS has you using this power for evil.

    Your reactions were the only fact amongst a bunch of theories and unknowns, it was easy to blame you for that.

    And I’m sorry.

    Do you remember how it felt to be healthy? Do you remember climbing trees and mountains? Do you remember running and strength and adventure? Do you remember being able to touch and hug with reckless abandon?

    Let’s work together so that we can overcome CRPS and live a full life anyway. It’s not going to be easy, it’s going to be damned difficult, but we might get a better result if we’re not pulling in opposite directions.

    I’m going to stop thinking of you as an attacker, Body. I’m going to learn to love you instead. I’m going to call the pain out, name it when it does me wrong, so that I don’t end up thinking it’s your fault again.

    CRPS is burning me all over today, so much so that I think we probably glow. CRPS is burning us, because there is no separation, not really.

    I’ve felt like you were my enemy for so long, but now I realise that you are just a fellow victim. We are both prisoners in this cell and we’re gonna need teamwork to get out of it.

    Are you game?

    Love & Apologies,
    Caf’s Consciousness

    Dear Audy, Do you blame your body for chronic pain or illness? I wonder if thinking about this differently will help me with coping. A change in mindset can be a change in everything, I’m curious to see if it will have some influence in this instance. Wish me luck!
    Love, Caf


    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.

    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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  • What Mindfulness Means To Me

    Dear Audy,

    Today I’m going to be using the hidden NHBPM prompt that I discovered existed through Facebook eavesdropping: Mindfulness. Depression and anxiety can run rampant through patients that are dealing with chronic pain and addressing these issues is as important as confronting the physical factors.

    Mindful, Meditation, Illustration

    Click image for source



    Mindfulness is a topic that comes up a lot when learning about pain management techniques. You’ve probably heard of it before, it often hangs out with its good friend, Meditation. It’s a topic that I’ve read a lot about, in various books and blogs and one that can be approached in different ways. You could say that mindfulness is form of meditation, or meditation is a form of mindfulness, but you’d just be applying labels where they don’t need to be and sending your thoughts into a loop that leads to nowhere.

    The whole point of mindfulness is to avoid such loops and only hitch your thoughts to the wagons that matter.

    This is what mindfulness means to me:

    Being aware of the happenings in one’s mind, recognising when things need to be altered and then taking action towards achieving a more peaceful self.

    But mostly the recognition part, it’s impossible to change thought patterns that you are not aware of.


    Being mindful is a way to be in the present moment. It’s a method of focusing attention on what’s in front of us, as opposed to regretting the past and worrying about the future. As you become aware of your thoughts and the sorts of thoughts that precede unwelcome emotions, it’s fairly easy to see how much emotional turmoil is caused by thinking about situations that are in the past and unchangeable, or in the future and uncertain to ever happen at all.

    So, how does that work? The more you try not to think about something, the more you actually do, right?

    To simplify mindfulness, it works through distraction. Oddly, focused distraction. It works by allowing details to fill our perception, rather than relying on the brain to fill in the gaps (which is how we perceive most things). The key to being mindful is noticing.

    You thought the devil on your shoulder was deceiving? He’s got nothing on the monkey in your mind.


    I heard a rumour that the biggest trick The Devil ever played was convincing the world that he doesn’t exist. Fair enough, that’s a pretty good scam if you want to go around wreaking havoc, but it’s not the sneakiest attack that humans are under.

    The monkey in your mind would have you believe that you don’t exist. It chatters and chatters and we believe that this voice rattling through our skulls is ourselves.


    But if that were the case and we are our minds, then who on Earth is reading this and partially trying to see what their mind is up to right now?

    Who thinks “I have anxiety”?

    Who thinks “I have pain”?

    Who thinks “I have depression”?

    Who recognises that they have thoughts in the first place?

    We’re complicated beings, us of the human variety.

    How does one break out of this labyrinth of thorny thoughts?

    By paying attention. I know, I know, your attention span has shrunk to the length of a YouTube video (and not one of those “now allowed 15min+” vids) and brain fog makes it hard for you to focus on anything. It’s alright, mindfulness doesn’t require you to continually focus on one thing as a means of distracting your mind. Just about anything in this world can be used as a basis for practising mindfulness.

    Sometimes my mind gets all revved up on anxiety and starts berating me about unnecessary things.

    “You shouldn’t have done this/or that/or that other thing, Caf, you’re a bad person” – Past centric thinking/Unhelpful self judgement

    “You aren’t ever going to be able to do this/or that/or that other thing with CRPS, Caf, your future is bleak” – Future centric thinking/Prediction

    Neither of these approaches is a thought trail that I want to go down. Also, neither of these thoughts is accurate, concrete or certain.

    Both of these trails lead to the exact same place: Negative Emotion Land. Really, there are so many paths in and out of the dreadful place that nobody should be surprised to realise they are on one and hadn’t noticed. It happens to me all the time.

    Sometimes, noticing is all it takes to jump tracks. For example, when I notice that I’m feeling tense about how I think something in the future will be, I realise that I’m playing fortune teller. I’m fooling myself like a gypsy fools fairgoers. It’s easy to disregard these thoughts after that, they don’t always fade immediately but thankfully seem to have some pride and eventually stop popping back up to have me ridicule them.

    It’s more difficult to deal with anxiety patterns that are focused on the past. Often, I actually do believe that I shouldn’t have done that thing or that other thing, but I don’t truly believe that I am a bad person. I call the recognition of past failings and not repeating those behaviours “learning” – it’s this amazing thing where you don’t have to give up on all hope for yourself just because you’ve made a mistake or ten, or a thousand.

    In terms of mindfulness, I am recognising the thought as a thought, recognising that there are two different aspects to this being an anxious thought and then recognising other ways to perceive that memory, judgment or prediction that are more helpful to my present.

    Sometimes, that works for a minute and then my mind careens back toward a trail what will take it to The Palace Of Sads (capital of Negative Emotion Land). I notice that I’m on the wrong track again and repeat cycle. Anxiety is a vicious thing, it doesn’t bugger off just because you’re onto it, it screams louder. It can take some time to quiet that roaring. Mindfulness is a technique and it takes practise.

    Most of us rely on language as our primary means of both communication and understanding. When we monitor our thoughts, the language that they appear to us in can be used as a tool to focus and then shift attention. Improving our emotional state can be something as simple as swapping “I’ll never be out of pain” for “I am in pain today, but nobody knows what the future holds”. One of these things is not quite like the other, one nurses fear and the other carries hope.

    Language wields more power than many people know, but it isn’t the only way to be mindful.

    Mindfulness can often be effective for me if I focus instead on physical sensations rather than purposely attempting to stop thinking about whatever is causing me anxiety. This is most helpful when I am dealing with problems are are in the present moment.

    There are problems in the present too? But I thought that’s where mindfulness was taking us! I don’t wanna go anymore…

    There are problems everywhere. Thankfully, people are problem solvers. Mindfulness gives us tools to help conquer and cope with our problems, but it isn’t going to make them go away.

    The present moment issue that I have to deal most with is loads and loads of intense pain, both of the physical and the emotional variety. I can’t think my way out of a CRPS flare up, but I can use mindfulness techniques to help shush the associated emotions.

    Breathing is my solid, go to distraction. How am I breathing? Where does the air go? What does it feel like? Is it cold? Is it damp? Could I be oxygenating my brain a little better by deepening these breaths? The answers don’t need to be verbalised, they are merely prompts for noticing.

    Switching up my senses is another great tool. By nature, I am a visual type of person, I will never remember your name if I haven’t seen it written down or pictured the letters in my mind. This is just a predilection, it doesn’t mean that my other senses are inferior, they’re just less attuned. In a point worth noting: I have only recognised this about myself through practising mindfulness.

    A visual mindfulness activity is to look at things and notice something about them. What’s in front of you? Is it round? Is it green? Is it shiny? These might sound like simple things to answer, however the very act of pondering these questions is mindful.

    One can’t turn senses on and off, but it is possible to regulate how much attention we give them in any moment. If noticing visuals isn’t helping, I can switch to noticing sounds. What can I hear? What sort of noise is it? Is it high pitched? Does it have a beat?

    Sounds not working for you? Try thinking about touch. What can you feel on your skin? Is it pleasant? Soft? Scratchy? Painful? Warm? Freezing? Where can you feel air moving around you?

    The point of these exercises is not to decipher what any of these stimuli mean, it’s not to understand them. When being mindful, all we need to do is notice. Pain can hurt like hell, but it can also be a good, physical sensation to use as a basis for mindfulness practise once we stop judging it as bad/wrong/unwanted.

    As you can see, mindfulness isn’t so much a method of ceasing negative thought patterns (as is commonly believed) it is a method of channeling focus and awareness into other things. When you do that, there simply isn’t as much space left for your brain to be running its own destructive thought attacks.

    Once you start looking, you’ll be surprised at how much stuff is around you that can find a place in your present mind. Fill your brain up with details and you squeeze the chattering monkey out.

    Mindfulness is kind of logical, but very open to personal interpretation. What does it mean to you, Audy?


    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 & Cheers To Better Thinking,
    Caf

    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.