Tag Archives: NERVEmber

The Very First #CRPSOrangeDay

Dear Audy,

Monday, November 3rd, was Color the World Orange Day, or Colour the World Orange Day for those of us outside the USA. I found out about this awareness raising campaign through the Facebook page that was set up, however I don’t know who to thank personally for getting this day happening. I wish I did! Thank you, mystery person.

The premise of the campaign was simple. It aimed to educate people about CRPS through whatever means could be thought up. Some participants set up information tables at community venues, or handed out brochures about CRPS with orange ribbons. Some participants organised get togethers for orange clad supporters. Some participants gave speeches at schools, or told their stories to the media. Some participants convinced local attractions to turn orange in support, including bridge and building lights and even the water in an Aussie fountain. Check out the Color the World Orange page on Facebook for pictures from these events.

My participation this year was very base level. I wore orange. I posted pictures and CRPS facts on social media with the hashtag #CRPSOrangeDay. I encouraged others to join in and paid attention to the hashtagged posts. I connected with other CRPS sufferers and marvelled at how moving it was to look at so many pictures of people wearing orange to support us. It was much more overwhelming than I could have expected. The effect of seeing all of that support at once was inspiring, I can’t wait to see this event get even bigger next year!

My Prince took my orange dress and I for an adventure in the countryside!

My Prince took my orange dress and I for an adventure in the countryside!



You can see all the pictures that I posted throughout the day on Facebook or Instagram.

In the months leading up to November, I really wasn’t sure that I’d be able to participate at all. Spring is the hardest season for my body to cope with and I struggle to simply function enough to stay alive. I didn’t have the energy, or brainpower required for organising an event. A lot of people were preparing for the day by organising orange ribbons or having t-shirts and brochures printed. I would have liked to get involved in those efforts too, however finances have been particularly tight around here this year and there was no wiggle room in my budget, not even for good causes that directly affect me.

Raising awareness of a debilitating illness can be tough when you are also struggling through the pain and ongoing symptoms yourself. I have so much respect for all of the people with CRPS who were able to organise events. I’m also really grateful to the friends and family members who have helped and supported their efforts.

In retrospect, I might have felt less nervous about being able to participate and more excited about the arrival of an awareness day if I had asked my own friends and family for help in advance. I often feel like my very existence bombards them with CRPS awareness overload, however that’s probably just my perception of the situation and my desire to not be a burden, rather than a reality. I think a lot of them would be happy to help me raise awareness for one day of the year if I’d simply thought it would be alright if I asked for help. This is my biggest lesson from the first Colour the World Orange Day and I’ll be working on improving my attitude about asking for help for next year.

It doesn’t hurt to ask, right? I’m not sure when I decided that my CRPS must be bothering the people close to me. Maybe around the time that I got sick of thinking about it myself? Ahhh, projection, you sneaky little so and so.

The best part about CRPS Orange Day is that today, there are more people that are aware of this monstrous disease than there were at the beginning of the month. That’s well and truly worth everybody’s efforts to raise awareness, no matter how big or small.

Click here to view pictures using the #CRPSOrangeDay hashtag on Instagram!

I’ll leave you with this awesome contribution to CRPS awareness from Danielle Stratton:



Love & Lots of Orange,
Caf

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  • Wrapping Up A Month Of Blogging Mania

    Dear Audy,

    Today it is December and Australia is welcoming Summer and all of its sunny days and lingering evenings. Christmas is coming, school years are wrapping up and party invitations are rolling in. Change is in the air and, with a sense of sweet accomplishment, I am bidding farewell to CRPS Awareness Month for 2012.

    Not that I’m going to stop blogging or attempting to raise awareness, I’m just going to tone it back to its regular intensity.

    This marks my 25th post for the WEGO Health challenge and 25/30 isn’t so bad. I’ve written some posts that I’m really proud of. Some of the topics had been floating about my mind for some time, just waiting for me to find the motivation to sit down and map out my thoughts in words. Other topics had me sit and think about things that I’d never much pondered over before and I enjoyed the inspiration that arose from doing so.

    Participating in NHBPM has introduced me to some amazing bloggers and all round fabulous people that I am looking forward to keeping in touch with. Finding active blogs that I can relate to and connect with can be a time consuming task and I love the way that this challenge brought them all into one, easy to find, place.

    Welcome to my google reader, all of you fabulous health bloggers.

    When I dove into this challenge at the beginning of November, I really wasn’t sure how far I’d get. It had been so long since I’d been able to stick to any sort of routine, or regular concentration schedule. I was feeling really low, really useless and wondering if I was going to be useful in any way, ever again. Depression was sinking its claws into me and I needed something to focus on to help me muster the strength to break free.

    I really needed something to work out. I needed something to go my way. By taking on a challenge that only I was responsible for, I was able to take some control over improving my own situation.


    I had to set some personal goals to help keep me on track. I had to refuse to let my pain stop me from writing. This didn’t work out every day, but on many occasions I managed to overcome temporary flaring by switching up how I was writing (typing/dictation/ touchscreen) and working hard at pain management to keep symptoms as under control as possible. It helped to pace myself, take regular breaks and practise J.K. Rowling’s advice about welcoming interruptions.

    I managed to cut further through brain fog than I knew that I could. Many of my posts began as ramble that I keep going over, looking for patterns and then linking my thoughts into paragraphs that make sense. By refusing to give up, even when I had spent hours and hardly gotten anywhere, I was able to strengthen my concentration powers in spite of the CRPS handicap.

    Making all of this writing happen has taken a toll on my ability to manage daily life. There has been less time to keep the house clean, less time for cooking, less energy for shopping, running errands or organising appointments. My inboxes are bursting with messages in need of attention and response. I knew this would be the case going in and was ready for the exhaustion.

    I was prepared to run myself a little ragged for a month in pursuit of both improving my mental health and raising awareness for a condition that effects so many people.


    An unexpected bonus of this extensive effort has been practise in being busy. When I was healthy, I always found that the busier I was, the more I got done. Not having time to spare helps to cut out a lot of the excuses that seem viable when one has plenty of time to procrastinate.

    Managing CRPS requires a lot of rest and so, whilst it’s not feasible that I keep myself super busy all the time, I will be working harder to recognise that doing the must-be-done things as quickly as possible is less stressful than letting them hang around.


    I am looking forward to taking the momentum that I’ve created during November and continuing to improve my concentration abilities. I’d like to extend my writing range and further increase my ability to manage around my CRPS symptoms.

    I don’t expect to be able to do whatever I want, whenever I want, without consequence. I simply see that I can improve my ability to function in slight ways that will accumulate over time.

    I’m taking the Feldenkrais perspective on learning. I’m applying a step-by-step attitude to learning tasks and routine, just like the Feldenkrais method does to learning movement. I’m focusing on improvement and not ultimate result.

    I’m not sure I even believe in ultimate results in this temporary world of ours.

    And now… the NHBPM recap!


    Here is a list of all my contributions, in order of statistical popularity, so the best stuff is at the top…

    The Awareness Bracelet Scam Of The 21st Century
    How To Treat A Friend Who Lives With Chronic Pain
    You Need To See A Psychiatrist
    Is Posting About Health On Facebook OK?
    Dealing With Negative Feedback In An Online Community
    Dear Body, I’m Sorry
    What Mindfulness Means To Me
    When Health Is Weird
    When Happy Memories Hurt
    Disclosure & Chronic Pain: How Much Is Too Much?
    Shh! You Don’t Talk About Suicide
    From Weakness, Grows Strength
    How To Take Time Out From Unrelenting Pain
    Why I Write About My Health
    The Loveliest Little Helpers
    What Is Feldenkrais?
    What About The People With Chronic Pain, Government?
    Extra! Extra!
    The Doctors That Teach Distrust
    When Coping Skills Collapse
    In Review: The Brain That Changes Itself by Norman Doidge
    In A Pain-free Reverie
    Health Activist Award Nominations & Halfway Through My Blogging Challenge Celebrations
    This Post Is Just A Porthole


    To help celebrate the work of Health Bloggers everywhere, nominations are now open for the WEGO Health Activist Awards 2012.

    I’ve been nominating all of my favourite health blogs. If Rellacafa happens to be one of your favourites, please nominate me!

    Click here to surf over to the nomination form




    I’ve put in a lot of work this month and I am so incredibly grateful to everybody who bothered to read and then helped to share my efforts. Thank you!

    Thank you for the kind messages, the thumbs of support and the tales of relatable experiences. Thank you for the emails, the comments and the social media discussions. Thank you for the times you shared my perspective and thank you for when you disagreed with me politely and taught me about things that I hadn’t considered.

    Thank you for taking this journey with me, Audy, it wouldn’t have been the same without you.


    It’s the end of National Health Blog Post Month for 2012, but far from the end of health blogging itself. We are a growing niche of shared experiences and information. We are a community that is invaluable to many people who are coping with chronic pain and illness.

    It matters, this blogging thing. It is important and we are important. Take the plunge if you’re only just considering starting a blog of your own and keep writing, fellow health bloggers, keep sharing. The future looks so calm beyond the murky fog of misunderstanding and stigmatisation.

    You can stay in touch with me by subscribing to Rellacafa via email (sidebar, top right) or RSS, liking the Rellacafa page on Facebook, following me on Twitter, Instagram or Youtube, or even all of these options if you happen to like to stay plugged in. You are all welcome in my online world.

    Love & Triumph,
    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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  • This Post Is Just A Porthole

    Dear Audy,

    I’m so sorry Audy, but I’m copping out a bit on NHBPM today. You see, today I learnt that gizoogle exists and now I have to cook dinner. I also got to hang out with a lovely visitor, but let’s face it, we mostly just gizoogled things.

    Today I’m prompted to write about how my goals have evolved, which is pretty much what I wrote about yesterday in A Pain-free Reverie. What can I say? I double topic-ed and I didn’t even know it. It’s either a neat coincidence, or my brain read ahead and then tricked me by blending one prompt with another.

    For those of you who have been reading along daily, I have another story for you that you might not have read…

    One of the bonus prompts for WEGO’s health challenge is to write about what it’s like to travel with CRPS. Earlier this year I attended The Festival of Hope, which Chronic Pain Australia organised in Sydney. This was the furthest that I’ve travelled since developing CRPS and I’ve written all about it here: Caf Goes To Sydney.

    Still in a reading mood? Please skip along to this event and from there, the world of health blogs is at your fingertips.

    If you happen to have spent today gizoogling aswell, then you will probably also enjoy these pictures of Snoop Dogg next to dogs that look like him. This is why the internet exists, people.

    Click image for source



    Click image for source



    Click image for source



    That’s it, that’s all I’ve got today, my thinker is all burnt out. See you tomorrow!

    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 & Hommieshizzle (friendship, obvs)
    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 A Pain-free Reverie…

    Dear Audy,

    Unlimited energy…what a wonderful thought. Most people who have aged out of childhood would love to be given an extra shot of easy energy, that’s why many of us drink coffee, or do crystal meth*.

    Click image for source.



    It’s hard to picture my life in a body that has returned to health. The whole concept seems like such a fairytale, so foreign and laden with fantasy.

    It’s much easier to picture the life that I would have lived if CRPS hadn’t shown up at all, despite knowing the inaccurate nature of parallel life fabrications. I guess parts of me are still letting go of that old future…

    Nostalgia is part what happened and part deluded desire. It’s so pretty in its past possibilities. Once the bad stuff has been glossed over, there is only sunshine and sparkling memories with a sepia tinge. The things that never happened? Oh, how they would have…

    The idea of unlimited energy sits a bit differently in my mind now than it did before CRPS. My body uses energy less efficiently these days. If I project myself to a place of unlimited energy, I’m going to have to tweak the parameters so that I have unlimited strength, too. While I’m at it, let’s just get rid of this chronic pain thing altogether.

    There we go. I’m imaginarily healthy now. What would I do if this was real life?

    If I returned to health right now, today, I’d want to do everything.


  • I’d visit everybody.


  • I’d go and see the friends that I’ve missed for so long. I’d bring excitement and adventure to them, reminisce through recreation and then create new memories in that awesome realm of our melded minds.

    I’d bring gifts, conversation, coffee and hugs to the friends that I’ve made who live with chronic illness.

    I’d flit about flippantly and shower my loves with the friendship that has been insufficiently expressed in recent years. I’d be that person they remember and that evolving person that they’re always getting to know. A whole person; a friend and a lover, an acquaintance and a family member, a girl and a woman, a tiger and a unicorn.

  • I’d play.


  • I’d go to the zoo, to Luna Park, to the beach or the gardens, to a picnic or a pub. I’d just want to play like a puppy and get lost in a rapture of ridiculous fun.

    I’d skip with you beside Melbourne’s arterial river, let you lift me up and twirl me around as though trouble could never catch us. I’d be as swift as the wind and as invincible as a child.

  • I’d run.


  • As fast as I could, until my lungs felt bursting with life. I’d swim laps until my limbs turned to jelly. I’d dance until I felt delirious. I’d drive all the way to paradise and catch waves in the setting sun and the summer breeze.

    I’d exercise, really exert myself, and pay only the cost of well worked muscles.

    I’d climb mountains and abseil down cliffs. I’d ride rivers, awash with white water. I’d trek through jungles, hike to the remotest parts of the world and take on every adventure along the way.

  • I’d work.


  • It’s been so long since I earned my own money and seems like forever since I paid my own way. I feel like, if I could physically handle employment, I’d be so much better at pulling off professionalism than I was in my younger days. Living with chronic pain, I have developed a skill for picking out what’s really important and not sweating the small stuff, or the small minds. I wouldn’t indulge in workplace drama and I wouldn’t waste time worrying.

    The things I used to stress about are so foreign to me now, so easily solved and surmountable.

  • I’d be the housewife that I never thought I’d want to be.


  • I’d cook every day. I’d explore new recipes, old recipes and create my own. I’d tend to the garden. I’d build a backyard of green and grow gorgeous beds of herbs and veg.

    I’d keep my house clean. I’d clean it all at once, go on a spree and then collapse with satisfaction on my shining floor. I’d decorate it, dress it up and fill it with the furniture that I could afford because I’d be able to work.

    You’d lick your lips in anticipation at the sweet scents from my kitchen, stifle jealousy at the sight of my luscious garden and marvel at my interior design.

  • I’d sew together all the dresses that I’ve dreamed of.


  • I’d create a wardrobe of wonders, gifts for all my friends and maybe even design something worth selling.

  • I’d paint pictures and take classes.


  • I’d learn new crafts. I’d learn to play instruments. I’d go back to university, take courses and be able to carry through until completion. I’d learn everything, absolutely everything, and then I’d write about it.

    In sickness, I’ve come to understand my ability to learn and create in an exciting new way. I’d take this gift back to health with me. I’d nurture it and let it shine through the conduit of my healthy body.

  • I’d revel in freedom.


  • Ah, to be free. To make choices, suffer consequences and imbibe the wisdom of experience. I’d travel as far as my pennies could take me. I’d see all the things that have only ever met my eyes in photographs, or my soul in stories.

    I want to run

    Until there’s comfort

    Until it’s simple

    So simple

    And there’s nothing but me…

    Running


    An excerpt from an old poem, one with words arranged forcefully and fuelled by frustration.

    I used to let myself dream more often. The trouble was, without any sort of healthy perspective, those dreams would lead to tears. Realistic goals hold more comfort in the present moment. I find it easier to cope when my focus is dedicated to improving my immediate situation, rather than imagining that reality is not as it is.


    Day to day coping aside, I do think that it’s important to dream. The best dreams are the ones that have roots in reality, but extend their branches to a reach beyond what is known for sure.

    You can’t achieve a dream that you’ve never dreamed. If you tailor your goals to grow from what you already know, you’d be surprised by how much progress is possible.


    My goals for my life with CRPS are different to those that I imagine I’d have if I was living without it.

    I dream about improvement, I dream about overcoming and I dream about accomplishing, in spite of all setbacks. I dream about writing regularly and for a wider audience. I dream about finding more effective methods to cope with my pain.

    I dream the dreams of a broken optimist; I dream the dreams of an idealistic realist.

    If I had unlimited energy, or freedom from chronic pain, I’d dream bigger and I’d achieve more than I do. I’d appreciate life like I have never appreciated it before. There are just so many amazing possibilities for people who have good health and peaceful minds, I’d want to pursue as many of them as I could.

    What would you do if you had unlimited energy and no pain?


    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 & Sweet Fantasy,
    Caf

    *I don’t do crystal meth. Probably because I don’t have any crystal meth, or a death wish. But it is true that I’ve been watching a lot of Breaking Bad.

    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 Doctors That Teach Distrust

    Dear Audy,

    Earlier this month, I published You Need To See A Psychiatrist, which details some of the most distressing appointments that I’ve had with doctors and provides some background information for today’s post.

    Sometimes, the only way to make peace with a traumatic event is to find the silver lining, the little glints of goodness that sparkle amongst the ashes.

    I definitely learnt things from the previously mentioned Pain Specialist Prick. Some of those lessons were as he intended, others were the harsh type of lesson that we learn when the universe seems to spit in our face.

    PSP was the doctor that broke me most and was able to do so because his earlier behaviour, logic and expertise, had convinced me that he was different, that he actually knew what he was talking about.

    When he turned on me, it felt like a betrayal.

    He taught me some pretty important things. Medically speaking, he knew more than the “pain specialist” that had previously kicked me out because “CRPS doesn’t spread” (I just can’t take that guy’s title seriously).

    PSP taught me how chronic pain can progress in some cases. He taught me about how CRPS can spread from limb to limb due to changes in the brain. He taught me about the connection between chronic pain, emotional disturbance and brain fog. He explained central sensitisation to me and helped me to understand what was happening in my body and my mind.


    I’d be grateful if he hadn’t turned out to be such a bitter soul; his intelligence warped by his arrogance. I try to be grateful. If nothing else, he left me with an excellent meditative anchor on which to practise forgiveness.

    The last thing that PSP taught me was not to have faith in medical professionals.


    It’s been a double-edged, sword of a lesson.

    Or, perhaps a dual blade sword.



    On the front of the blade, in learning to cope with his awful behaviour, I have gotten stronger. I took the pieces of my shattered mind and I built a stronger foundation. I have been able to take more responsibility for my own care and more responsibility for learning ways to improve my quality of life. I’ve learnt to have more faith in myself when it comes to accepting, or overcoming, limits.

    I think betterer a lot now. Sometimes.

    On the back of the blade, I’ve learnt to not trust that anybody knows what they’re doing. No matter how many credentials they’ve earned. Especially not doctors.

    I finally found a decent pain specialist, who I now haven’t seen in over a year because during my last appointment, he didn’t have my records and kept trying to prescribe me Lyrica again. It was frustrating. He just didn’t even seem to recognise me and I left with a recommendation for taking a natural supplement as a painkiller, which did absolutely nothing.

    He wasn’t even mean to me, but I’ve felt like I’d be wasting my time going back. One lacklustre appointment and I can’t find the motivation to return.

    Maybe this wasn’t a lesson, maybe it’s a fear. Isn’t fear always a lesson of sorts?

    My previous experiences have left me raw. These days, it takes longer to build up skin that’s thick enough to deal with any sort of attempt to seek further help in managing my pain.


    It takes a lot of time, skill and practise to overcome a fearful lesson. It’s not that I blame anybody for the wrongdoings committed against me in my past, except for the perpetrators themselves, it’s that I struggle to trust those in similar professional positions.

    Not blaming is different to trusting. I’m not sure that I truly trust any doctors, despite having a lovely GP. Liking is different to trusting too.


    Healthy skepticism is a wonderful thing, however I don’t like feeling cynical. I might not be able to remanufacture trust out of thin air, but I can keep trying to recognise when a lack of it is interfering with my recovery. I can keep trying to approach each new situation, or medical professional, with an open attitude, rather than with anxious cynicism.

    A lot of the time now, I feel a bit lost in trying to improve my management of Complex Regional Pain Syndrome. I plod along and I do the rehabilitation things that I have learnt will help and I keep hoping that I’ll push through to a better level of functioning.

    Maybe that’s all I can do, maybe it just feels slow sometimes.

    The past has burnt my trusting gland like CRPS burns my nerves, but this a burn that can be soothed. I’ll just have to keep working at it, because I might happen to need further help one day and I’d rather not be dealing with extra stress seeping in from my past.

    Do you trust your doctors?


    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 & Letting Go,
    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 Coping Skills Collapse…

    Dear Audy,

    I fell a little bit behind in my NHBPM challenge, frankly, I fell a little bit behind in general. It’s kind of perfect that one of the topics that I’ve missed was to write about change; change is the exact reason that I had to take a break from blogging for a couple of days.

    In learning to cope with Complex Regional Pain Syndrome, I have to try to embrace change. Being inflexible is not a viable, long term option for me. I can’t rely on my body to stay in one state from moment to moment, let alone day to day. Embracing change isn’t easy. I’m not sure that’s where I’m at yet, I might still just be learning to tolerate it…

    I’ve been having some trouble with my back for as long as I can remember, however that trouble decided to upgrade to TROUBLE in recent weeks and I’ve struggled to manage the fallout.

    The tiniest changes can throw a sensitised body completely off course. My back problems usually start with a bit of a twist and then spiral into wayward pain syndrome symptoms throughout my body. There isn’t always a noticeable, injury-like trigger, sometimes it just seems to happen. I suspect that in these instances, there was a trigger, it was just so very slight that I didn’t feel it happening at the time.

    How silly of me to unpack a dishwasher! How dare I bend down to pet the dogs! What was I thinking attempting to stand up from that chair?!

    I see an osteopath regularly to help me keep my spine in line, however, sometimes shifting my skeleton back into a functioning place is just as painful as shifting it out of one. It can take a few days for my body to adjust to the adjustment. This past week has just been one of those occasions in which I take longer to recover than normal.

    Extended recovery times are just par for the course with chronic pain. It takes less injury to knock our bodies out of whack and more effort to shift them back.


    Sudden change, such as this, can be hard to deal with. My pain levels skyrocketed and my mobility seemed to be mocking me from just out of reach. I’ve needed my cane to walk, which tends to exacerbate pain in my right shoulder, because being unbalanced is a change too and all of the changes have consequences.

    I thought I was almost recovered for a moment there and drove Sammy Fluffball to be transformed into HandSomemy, which is about a ten minute drive done twice.

    Maltese Shih Tzu

    Now I can’t look at him without thinking words like “adorabubble”



    My back really struggled to accept this activity, despite all of my postural efforts to ease its pain. The following day brought all of the painful punishment and I had to resort to painkillers to stop the moaning.

    Life with CRPS is not very action packed, however, losing the ability to even sit up places further limitations on activity options. Add to that the brain fog caused by enduring such high levels of pain, mixed with needing to medicate the problem, and the days can seem to stretch on forever.

    There’s a lot of staring at the walls and cuddling of the dogs. There’s some Feldenkrais, some stretching, some attempts at walking evenly, some soaking in an Epsom salted bath, and a whole lot of trying to find ways to not get upset.

    The days like this, the days that drag, are the hardest days to not think about the changes that CRPS has brought into my life. These are the days when I feel the most trapped, when I feel the most disabled. These are the days that exemplify just how crippling chronic pain can be. These are the days filled with longing so powerful that it’s hard to keep track of all the thought trails that are taking me towards sadness.

    I want stability and things to hold onto. I want a springboard foundation from which I can fling myself towards any plans that I choose to pursue. I want to feel free in a moment, to feel limitless and safe. I want to turn back the clock and just freeze time there, in a pain free paradise of youth.

    I want to change so much that you wouldn’t recognise me. Leap forward through time to that pot of gold at the end of the rainbow, that place where dreams come true. I want to heal from my soles to my soul and morph into my butterfly self, my realised potential.


    Escapism can be nice, but we all have to return to reality eventually, because it is always changing and there are things that need to be taken care of as they arise.


    Yesterday was the day that it was all too much. Yesterday, I could hardly think rationally, all I seemed to do was feel. It was a beautiful day, you see, the kind of day that seems like a gift from the sun-kissed Spring. The kind of day when Instagram fills with smiles, scenery and Summer dresses.

    The kind of day that sees temperatures rise and humidity become denser. The kind of day that my CRPS despises, that turns my bones to lead, melts my muscles, boils my blood and scorches the underside of my skin. The kind of day that casts a cloud over my mind, that zaps my energy before I even awaken, that weakens me from my knuckles to my knowing.

    It’s so difficult to know things when one feels attacked by the very atmosphere that miraculously sustains life. I thought we were friends, Earth.

    I lost grip and let go of coping. Perhaps I had to let go. Maybe, sometimes, it’s only possible to cope by not trying to. The ability to cry is built into us for a reason.

    I waded in a dazed confusion for several hours before sinking into the sobs. I could feel the wave coming, but there was nothing to grab onto, no way to get back to shore before it hit. I gave up trying and just let it wash over me.


    I acknowledged the deterioration in my physical and emotional states and then let go of the day, it was the only thing that I could do. I gave up striving to achieve anything other than getting those feelings out. Release was the only way past them.

    Forcing words doesn’t work. I’ve tried before and I tried yesterday, but I can’t hear my muse when my mind is in a maelstrom.


    I cried and I cuddled and I breathed deeply as the sorrow streamed down my cheeks.

    Eventually, my inflamed emotional baggage seemed to empty and clear thoughts began to return in snippets. I engaged with some procedural hard drive rearranging; got a little something done that I’d been putting off. I practised some Feldenkrais, stretched, took a shower.

    I switched myself into chill out mode and told some of my troubles to a bowl of ice cream.

    I watched Krysten Ritter and Alicia Silverstone play vampires with hearts of gold and was genuinely surprised by how much I enjoyed it – sometimes cornball comedy is the perfect prescription. I watched Aubrey Plaza befriend a time travel planning crazy-cake, only to become completely absorbed in a sweet story that masqueraded as a confusingly cruel joke.

    When emotions are boiling out of control, the simple movies can seem so much more preferable to the fancy-pants, popular ones. Light entertainment can be the perfect distraction when stories that run deeper carry a risk of re-igniting the crying.


    I had dinner delivered and removed the physical danger of food preparation. This turned out to be a good thing considering my movement restrictions, because during the hour or so that I was eating, my ant-free kitchen lost its status in a spectacular way.

    Little buggers were marching one by one directly from my laundry door to my kitchen bench. The nerve!

    My indignation was quickly followed by a massacre that sucked any energy I had left for feeling things, or moving, right out of me.

    I started to feel better. I started to feel like my strength would return soon.

    Today, my back is feeling a little better at times and fairly messed up at others, but I am able to manage it more effectively than yesterday. I had been in such a state that my efforts at Feldenkrais had been too enthusiastic and I ended up making myself hurt more. Thankfully, today’s session only brought the better type of result and really helped me to get moving this morning.

    I’m no longer feeling sad or guilty that I couldn’t be a perfect, every day blogger for thirty days straight. I’m giving my inner perfectionist the rudest gesture I’ve got. I’m feeling comfortable in doing my best and sometimes that means taking time out to just feel, process and rest.

    Breakdown days can be inconvenient, but they are just a part of living a life with imposed limits. Experience has taught me that holding off on facing up to such days just drags the issues into the following ones. It can be a necessary delay sometimes, when there are unavoidable things to be done, but eventually the emotions always catch up and demand to be dealt with.

    Do you have breakdown days, Audy? What helps you to come back from the emotional edge?


    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 & Tissues,
    Caf

    P.S. I’m terribly behind at replying to emails and comments. Thank you so much to those who have written to me, I shall get to replying just as soon as I am able. 😉 xx

    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 Is Feldenkrais?

    Dear Audy,

    Today I’m going to be writing about an alternative therapy that actually isn’t very far removed from mainstream physiotherapy, it just has a fancier name: Feldenkrais.

    Feldenkrais is a movement therapy named after its creator, Moshe Feldenkrais. It sounds complicated and elusive to us Westerners, but that’s just because it’s a foreign word to most of us (it’s not “Feldenchrist”, but it sounds like that without the “t”).

    Did you know what Pilates was before this century? It took almost a hundred years for the genius of Joseph Pilates to go mainstream. Pilates is now accepted as a valuable form of strengthening and maintaining health, you can take classes in gyms all over the world.

    This sort of recognition, appreciation and widespread practise is the kind of future that I hope Feldenkrais is headed toward. It has helped me so much and is so simple, perhaps it’s simplicity is why it has spent so long in the shadows of other therapies. I mean, you know, aside from the fact that there’s no medication element and much of pain management research is funded by pharmaceutical companies.

    Feldenkrais gives me hope, it gives me a degree of control over the functioning of my body. Feldenkrais helps to reduce my chronic pain, it helps to improve my everyday movements so that I trigger less pain flares. Feldenkrais enlightens me, it shows me my body and nervous system in a way that I’d never seen them before – clearly.


    When I first started Feldenkrais, I needed mobility aids in order to get anywhere or do anything. I was on crutches/in a wheelchair/using a cane for years. Nowadays, I only need mobility aids if I’m particularly flared up. My regular posture is closer to ideal than it has ever been.

    I find it easier to implement activities into my life when I can grasp the reasoning behind them. Let me explain Feldenkrais to you in the way that helped me to understand…

    (I’d apologise for the length of this piece, but really, this is the information that I would have liked to have been able to google when I first heard of Feldenkrais. I ended up having to buy books, like an olden days person!)

    First, meet this guy. This is Moshe Feldenkrais:

    Moshe Feldenkrais

    Click image for source



    Moshe Feldenkrais was a physicist and engineer who suffered knee problems that inspired him to create a method of healing without surgery. He taught his body to work around the problem and in doing so, both walked freely once more and brought forth a new concept in healing that is based on the human nervous system’s ability to learn and evolve.

    “There is the learning of a skill; there is the kind of learning in which we enlarge our knowledge or understanding of what we already know. And there is the most important kind of learning which goes with physical growth. By this last I mean learning in which quantity grows and changes to a new quality, and not the mere accumulation of knowledge, useful as this may be. Often we do not see this kind of learning at all; it can go on for more or less lengthy periods of time, apparently aimlessly, and then new form of action appears as it from nowhere.”
    -Moshe Feldenkrais, quoted from The Case Of Nora


    The easiest way to understand the type of learning that Feldenkrais is talking about is like this: lift your arm up above your head, or just lift a finger, or any body part if you are unable to do the arm thing.

    OK, you can put it back down again. What sort of thinking did you need to perform this movement? Did you think, contract bicep 60%, lengthen tricep 20%, adjust angle of shoulder blade by 40 degrees, rotate radius red balloon degrees, or any other similar but less made up thoughts?

    Higher level thinking and language based logic are not how movement works. However, movement does work and it is learnt, just not in the intellectual way that you learn grammar and mathematics.


    Brains have evolved in a rather organised, build-on-what-you’ve-got, fashion. Here are a couple of images that will you give you an idea of what I’m talking about:

    Click image for source



    Click image for source



    Different species of animals have evolved to require different amounts of neuromuscular learning when they arrive here on Earth. The lower down the evolutionary chain, the less training, or apprenticeship is required. Think of herd animals; a baby cow or horse will be able to stand within moments of its birth, which is beneficial to species that needs to be follow its family or be left behind. Think of a mountain goat, born atop the jagged rocks of a cliff face…

    “Obviously all the connections, the wiring in the nervous systems of these animals must be made before they are born. In short, it is the species that has handed down the learning, the evolving, the reflex organisation, the instinct that enables them to survive in precarious conditions. However, most birds, dogs, kittens of all sorts, even tiger kittens, have to have some kind of coaching by their parents to finish the wiring in, establishing functioning patterns of their nervous systems. What makes this pattern reliable, autonomous, or automatic is an apprenticeship of a few weeks.”
    -Moshe Feldenkrais, quoted from The Elusive Obvious


    Human beings are the most effectively evolved species on the planet, if you define effective as a capability to take over the planet with our adaptable bodies and nimble minds (If you define effective as just plain lasting a long time, then we’ve got nothing on crocodiles)…

    “The human infant has the longest apprenticeship of all the species, to my knowledge. Although everything necessary to maintain life and growth is already connected in the nervous and glandular systems at birth, the specific human functions are not wired in at all. No baby was ever born who could speak, sing, whistle, crawl, walk upright, make music, count or think mathematically, tell the hour of the day or night, or know what it is to be late. Without a very long apprenticeship lasting several years none of these functions has ever been observed.”
    Moshe Feldenkrais, quoted from The Elusive Obvious


    Really think about that for a moment. We learn just about everything. Aside from instinctive bodily functions such as breathing, digesting and circulating blood, all of our behaviours are the product of learning. This is why every person is just a little bit different from the other people. Learning behaviours is the product of both capability and experience, things that are exactly the same in no two people.

    Earlier this month, I wrote about neuroplasticity and the ever changing brain. Everything that you learn is done so by your brain putting together a pattern of synaptic impulses. It’s all produced by patterns so complicated that science can’t fully comprehend them yet.

    “Complicated” is defined as consisting of many interconnecting parts or elements. In relation to learning, there are a lot of moments where the signals could take a slightly different path and create a different result. There are also a lot of crucial parts in the pattern where changes can be influenced; changes that can lead to an improvement in function.

    The techniques that Feldenkrais taught seek to improve movement through improving the underlying patterns of the nervous system. He believed that the human body is capable of adapting to any conditions in which life can exist. His method searches for the deepest, most reflexive patterns of movement and strengthens them through awareness and practise.


    Simply put, Feldenkrais figured that if there were so many different possibilities during the development of movement patterns, then they could logically be improved by re-learning those movements from scratch and discovering the movements from their smallest beginnings, kind of like a baby does.

    Chronic pain in the case of CRPS is a malfunction of the nervous system. The Feldenkrais method is designed to improve nervous system function. It’s not hard to see how this therapy could theoretically be helpful for a person managing CRPS.

    Theory is lovely, but experience is even better. I have experienced enormous improvement to my CRPS symptoms and ability to function around them since beginning Feldenkrais practise almost two years ago.


    When using Feldenkrais to manage chronic pain, it’s helpful to remember that the technique is not designed to cure (even if it effectively does sometimes) it is designed to improve. In the instance that Feldenkrais practise leads to total relief of pain or other symptoms, the body was not cured, it was simply improved enough so that you’d hardly notice the difference.

    “Posture can only be improved and not corrected. Only the concept of an ideal posture might be considered correct, but such a posture can exist only with an ideal brain and nervous system. Ideal models like this do not exist in reality. They can be approached more or less, but only approached, and there are almost as many directions of approach as radii in a circle.”
    -Moshe Feldenkrais, quoted from The Elusive Obvious


    Practising Feldenkrais and expecting to be cured in a short amount of time is unrealistic. It takes a lot of hard work and dedication to change the patterns in your nervous system. Thankfully, it’s hard work that requires little physical exertion.

    The mental dedication side of things is more difficult to maintain. Feldenkrais requires time spent in a relaxed but aware state that is rather like meditation. If you have tried to use meditation as a pain management technique and not found it helpful, Feldenkrais might be a good option for you.

    In my experience, having the tiny movements to focus on makes it easier for me to shift into a meditative state than trying to clear my mind using other mindfulness techniques. I think it’s because I feel like I’m doing something useful while I’m meditating, you know, more useful than just meditation on its own.

    What does practising Feldenkrais mean?

    Feldenkrais therapy exists in two separate, but related forms.

    Group classes, or exercises practised at home using lesson recordings, are known as Awareness Through Movement classes. One-on-one sessions with a practitioner are referred to as Functional Integration.

    Awareness Through Movement is a nice a descriptive name, these exercises seek to discover exactly what they are titled after. ATM is often conducted in group classes, but can also be practised at home using recordings, or even freestyle once you have a good understanding of what you are doing. Instructions are often gentle and vague, allowing each person space to fill in their own gaps in understanding their own movements.

    Did you know that just imagining your body doing a movement sends a few signals through the nervous system pattern that would be activated in order for you to actually do that movement?

    This is why people who are learning to play music can find themselves improving even if just going over the lessons in their mind. They are practising the nervous system patterns associated with playing their instrument at a very low level, just by thinking about them.

    ATM sessions are not exercise classes. The movements are most helpful when performed in the slightest manner possible, with the most relaxation and without increasing pain, but with a heightened level of attention from your conscious mind. Sometimes, this means just imagining a movement if the execution of even its tiniest incarnation is too painful.

    When I write about practising Feldenkrais as a method of pain management, I am talking about practising Awareness Through Movement sessions at home. These are hugely variable in both length, intensity and which part of the body they are targeting. I’ve been at it for a while now, so I have a fairly good idea about what sort of ATM session will help with whatever symptoms I am experiencing on any given day.

    Functional Integration sessions are much more passive for the patient. When I think of FI sessions, it is like picturing a massage of the nervous system. My practitioner will move my body in tiny but varying ways that help it to realise that all its parts are connected to one another.

    No part of the body exists in absence of the rest of the body. We can accustom ourselves to moving things in isolation, however this is not the way that a well organised nervous system functions.

    “Things learned can be half learned, and they can even be badly learned. Hence the great variety of human postures which are obviously not all as good, one as the other.”
    -Moshe Feldenkrais, quoted from The Elusive Obvious


    Functional Integration allows the practitioner to teach the patient’s nervous system healthier patterns of movement. The practitioner is trained to observe the flow of movement and connectedness of the body and work to create improvements. When the body is well organised and connected, tension and pain can be dissolved.

    What does practising Feldenkrais feel like?

    When I feel Feldenkrais reducing my pain, it is almost like shifting into an alternate nervous system. It’s easy to slip back into the patterns that I’ve learned on top of the healthy ones, but repetition incites neuroplasticity and thus, the more I practice the healthy patterns, the stronger they get.

    The more I practise ATM sessions at home, the more value is added to my FI sessions. My nervous system is learning throughout all of this and it remembers. Underneath the malfunctions of CRPS, my body remembers that there were movement patterns and that they didn’t hurt. Feldenkrais helps me to uncover those, but I have to do my homework.

    Practising Feldenkrais involves a lot of focused attention, attention that is shifted off of my pain and problems. In this way, it gives me a meditative break without sitting still and trying to quiet my incessant mind. By focusing so intensely on what I am physically feeling, I give my brain a break from thinking too much about things in the words that I have taught it to use and the limits that such words can impose.

    “If you are told that somebody cannot do something, logically there is nothing you can do about it. Every diagnosis in words inhibits the brain from thinking for itself. If words say ‘incurable’ the situation will not be changed by saying ‘curable’. But if you use your sensory ability to look, learn, listen, and touch you may find new data which will make you see what you can do to help.”
    -Moshe Feldenkrais, quoted from The Case Of Nora


    Feldenkrais is about improvement; whether or not your condition is curable is irrelevant as to whether or not your nervous system function can be improved. Even the tiniest improvement is an improvement and that is where it must always begin. Improving the connectedness of your nervous system and your internal awareness of your body can help you to improve any activity that you can think of.

    Want to swing your golf club more effectively? Re-learn the technique from the beginning, pay physical attention to each part of the movement, practise each part of the sequence slowly and in order, and then feel as you swing more efficiently than ever before.

    Just don’t expect it to happen in a hurry. You didn’t become an adult with learned behaviours overnight, it’s unrealistic to expect your brain and nervous system to learn things faster now that you’re older. If anything, that works the other way around. It’s easier to create patterns where there are none than to attempt to change existing ones.

    Benefiting from Feldenkrais takes time, but that doesn’t mean it’s an uninteresting journey. I have been consistently surprised by my body along the way and amazed at parts of its function that I’d never paid attention to before. I have been blown away by the way my body increasingly responds more quickly to the same sessions, that’s evidence of learning that I can literally feel. I’m doing the same thing again and again, but filling in more details, realising more about the movement.

    My Feldenkrais practitioner describes my body now as a completely different to the one that I first showed up in, she can see and feel the difference too.

    The Feldenkrais method has opened up my mind to ways of learning that I’d never known of before and this has spread through every aspect of my life. I no longer see things that I can’t do, I see things that I haven’t learnt to do yet.


    I recommend Feldenkrais to anybody who wants to know their body better, to anybody who feels awkward in their movements, to anybody who wants to improve a particular skill. All of the skills start with your brain and your nervous system.

    You wouldn’t build your home on a shaky foundation, would you?

    Find out more information about Feldenkrais at The Australian Feldenkrais Guild.

    Would you try Feldenkrais if sessions and practitioners were readily accessible and affordable? Or, have you had experiences with Feldenkrais that you’d like to share?


    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 & Laying Down Carefully,
    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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  • Shh! You Don’t Talk About Suicide

    Dear Audy,

    NHBPM is digging deep with today’s prompt, all the way down to the core of the human experience: write about life and death.

    It’s important to talk about the hard topics sometimes. In attempting to raise awareness of Complex Regional Pain Syndrome, it would be remiss of me not to talk about the most tragic situation that befalls some people who suffer with this condition.

    Sometimes, people choose to end their lives themselves. The connection between chronic pain and suicide is a topic that is often hushed over.

    Click image for source



    People don’t like to talk about suicide with sore people, it might give them ideas.

    This taboo topic, however, is at the centre of many calls to crisis help lines and a common topic of discussion for counsellors who deal with patients in chronic pain.

    There can be a lot of shame involved with suicidal thoughts, a lot of loneliness and hopelessness. People can feel guilty for just having the thoughts, which can lead to them feeling even worse about life than they did to begin with. Shame can stop people from seeking help. Help that might literally save their lives.

    I’ve chosen to shed a light on this topic today because discussion breeds awareness and awareness creates room to tackle issues which, left untended, might fester and morph into even scarier monsters.

    It’s hard to work through psychological things that nobody ever wants to talk about.

    A couple of years ago, I wrote a post that includes some revealing quotes from Kurt Cobain, the grunge rock god and frontman for Nirvana who famously committed suicide in 1994. Kurt Cobain lived with chronic pain and no amount of fame or fortune was able to save him from tragically ending his own life. He spoke of how he felt misunderstood, of how he stopped complaining about his pain because he just didn’t want to talk about it anymore.

    “I wanted to fucken blow my head off I was so tired of it, there’s no way I’m gonna live like that. It turned me into a neurotic freak, I was psychologically fucked up, I was having a lot of mental problems cause I was having chronic pain, every day.”
    -Kurt Cobain, quoted from About A Son


    People remember the mental problems, people remember the drug abuse, but how many people remember the pain? How many even knew about it? I didn’t, not back then.

    Kurt Cobain is not the only person to have opted out of a life of pain.

    Earlier this year, Canadian teenager, Dominic Boivin, chose to take his own life when all efforts to cease his chronic pain had failed. Published just days ago, this article in The Vancouver Sun tells his tragic story.

    How many chronic pain related suicides don’t get reported? How many go unnoticed amidst the psychological ramifications of living with chronic pain? How often do we, as a society, blame depression for suicide and look no further for answers?

    Earlier this year, I met up with the Chronic Pain Australia board members for the first time. Several board members and associates have spent years answering calls from desperate people who are living with chronic pain and feeling right on the edge of sanity.

    I’d never much contemplated the extent of the chronic pain/suicide link before hearing of how regularly these calls are received, because I am not suicidal myself. I have wanted to die to escape the pain, but I have not pursued thoughts of wanting to kill myself. I’ve been so far down in the dark that I have been worried for myself at times but, somewhere inside, I have always had found the will to pull myself back.

    Not everybody living with CRPS finds this will and some go much further down, swimming so deeply in sadness that the fishes there don’t even bother to develop sight.

    Suicide is a very real risk for those living with chronic pain. It’s almost a hidden risk, because by the time one has a diagnosis of intractable pain, one has been through all the tests for other, more deadly, diseases. Everybody around the patient is relieved, they’re not going to die. They’ve dodged a bullet. It’s just pain without a cause, phew!


    Many conditions that cause chronic pain are not terminal, however many people who live with them will admit to wishing, at times, that their pain would just kill them and get it over with.

    Think of a torture scene from a terrifying movie, think of the mangled supporting players that beg for death.

    Wanting to escape chronic pain can feel like that, it can feel that utterly desperate.

    Being diagnosed with an incurable chronic pain condition is tough. All of a sudden, the life that you were planning for yourself is completely altered. The intense pain that you feel is given permanency and the limitations of a life in such extreme pain can be blinding. It can be hard to see past the pain, hard to see much of anything else at all. It can be impossible to hear that silent “yet…” that comes after “incurable”. It can be unfathomable to consider that there might be ways to heal that science can’t claim understanding of…yet.

    There’s a lot of stigma that comes with a chronic pain diagnosis. Along with experiencing constant and extreme pain, a person with CRPS also has to deal with being misunderstood both medically and socially. It can be overwhelming and difficult to overcome. An absence of hope makes the future look bleak.

    Depression can kill. It’s insidious, it’s powerful and it can be deadly. Depression is common symptom for people who live with chronic pain and the combination of the black dog and constant physical suffering can be catastrophic. It can happen slowly, or only take a moment. One really bleak moment containing the necessary means and a person can be lost forever to the turmoil that they felt imprisoned by.


    Some people see suicide as cowardice, but those people don’t realise how lucky they are. They don’t understand what it’s like to feel so much emotional pain that your soul becomes numb. They don’t understand that sometimes you can’t see the happy, anywhere. They’ve never been so traumatised by their lives that they can’t ever see the pieces fitting back together. They might think they have, but facing difficult circumstances and coping is a different thing to facing difficult circumstances and not coping.

    We’re so similar, us human people. We can relate in so many ways that it can give an illusion of knowing, of fully understanding another person. We’re all wired a little bit differently and we all see things our own way. Tragedy is not a comparable thing; overcoming a giant obstacle gives nobody grounds to make assumptions about somebody else who wouldn’t, who didn’t…who couldn’t.


    I was a fairly normal person before I developed Complex Regional Pain Syndrome. I’d had my share of bumps and bruises and probably more broken bones the average kid. I’d been sick, sprained, cut, gravel grazed, sunburned, fire burned…I’d felt pain. None of those things compare the pain that I feel as a part of daily life with CRPS. It’s an entirely different beast. It can be hard to get one’s head around just how much this thing can hurt, especially in the instances that all symptoms are invisible to the untrained eye.

    It’s not easy to find a way to be OK with having CRPS, but it is possible. I’ve been writing a lot lately and several of my earlier NHBPM posts discuss ways that I cope with my pain and lifestyle:

    What Mindfulness Mean To Me
    Dear Body, I’m Sorry
    The Loveliest Little Helpers
    How To Take Time Out From Unrelenting Pain
    How To Treat A Friend Who Lives With Chronic Pain

    If you find yourself feeling alone and unable to cope with chronic pain and/or depression, please seek help.


    If you are in Australia, please call Lifeline on 13 11 44
    Lifeline provide 24/7 crisis support and suicide prevention services

    If you are in a different country on this wildly wide planet of ours, please familiarise yourself with the crisis services that are available locally – you just never know when desperation might hit and it’s good to be prepared.

    Being aware that chronic pain creates a high risk of suicide is just another part of being aware that chronic pain exists, that it is a valid problem, that there are people who need help. They might not be dying, not yet, but many of them need help to keep it that way.

    You can help with your compassion. You can help by learning and sharing knowledge, you can make it OK to break the silence of suffering in secret. You can help by being a friend to somebody in need, just be their friend, just be there for them.

    You can help financially by donating to organisations that are trying to make life easier for people in pain and are alphabetically listed to avoid prejudice:

    Donate to Beyond Blue
    Donate to Chronic Pain Australia
    Donate to Lifeline

    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 & The Big Life Stuff,
    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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  • How To Treat A Friend Who Lives With Chronic Pain

    Dear Audy,

    Day 18 of NHBPM has me thinking about what advice I’d give to someone caring for a patient with my condition (Complex Regional Pain Syndrome). I’m going to ponder this prompt from the perspective of caring for a friend or loved one with CRPS, rather than from the perspective of a practitioner treating a patient.

    Every person is a little bit different from all the other people. Each person with CRPS is unique and the way in which one person likes to be treated might not be alright with another.

    Having a friend who lives with CRPS can be challenging. Their symptoms fluctuate frequently, are unpredictable, and the differences in their capabilities can alter drastically in short amounts of time. There are things that you can do to help a friend who is living with chronic pain and other things that it just helps to know.

    Disclaimer: no part of this blog post is intended as judgment on anybody other than myself (there’s this bit further down where I had a bit of a realisation).

    Maintaining relationships through chronic illness is a triumphant thing.



    Things that it helps to know when a friend or loved one lives with CRPS:


  • Educate yourself about the condition.


  • CRPS can be hard to explain, for both doctors and patients alike. The headlining symptom of CRPS is severe chronic pain. Over time, chronic pain causes changes to the brain and nervous system that can result in many whacky symptoms on top of the pain. CRPS can effect mobility, cause swelling, effect blood flow, cause changes to the skin and hair, effect perspiration and permeate into every aspect of a person’s life. Click here for a detailed description of CRPS.

  • Develop an open attitude toward learning and understanding the new needs of your friend or loved one.


  • When it comes to caring for somebody with CRPS, it’s important to remember that the severity of their condition is always changing. “How are you today?” is never a redundant question, no matter how many times you’ve heard “really sore” in response. Allow your friend or loved one a chance to explain anything that might help you to help them, at that time.

  • Never make assumptions about what a person with CRPS is capable of doing.


  • CRPS is constantly fluctuating, it’s not helpful to assume what I can, or should be able to do at any particular time. Sometimes I can walk, sometimes I can’t. Sometimes I can use my hands, sometimes I can’t. Sometimes I can drive, sometimes I can’t.

    People can often feel like they should already know things without ever having learnt them. Fear of asking a “stupid question” stops a lot of people from finding out the things that they don’t know. When it comes to asking about another’s capabilities, fear of crossing an intimacy line can also get in the way of open communication. Asking about health can feel like prying.

    CRPS effects everything that I do and when those activities involve other people, it effects them too. I can’t speak for others, but personally, it’s OK to ask about my health when considering future plans or even during current events, because it is relevant.

    I’d much rather smile and say, “No, I’m fine”, than to not be fine and struggle to find the words or courage to tell you that. It can suck to be an unintentional party pooper, but that can be made a little bit easier if the other partygoers are aware that my health failing is a possibility.

  • Beware of the brain fog.


  • A person who lives with CRPS has a brain full of signals that are zapping around in useless circles. Sometimes, these signals get in the way of regular thinking, kind of like trying to have a conversation at a rock concert. This doesn’t mean that a person with CRPS is any less intelligent than they were before they developed CRPS, it just means that it can be more difficult to get our brains to work around the constant malfunctioning. Brain fog can also be the result of, or exacerbated by, medication.

    When I am experiencing brain fog, I’m easily dazed and find it hard to take in new information. I struggle to find the right words and take the Freudian slip to a whole new level of almost-nonsense. You’re unlikely to see me during a really bad flare, however my lovely prince is often privy to my brain fog stutter, which is what happens during a sudden pain spike and involves my face scrunching up as I try to say any words at all.

    In my experience, it’s not a good idea to have important discussions when feeling particularly foggy, those can end up as arguments for no good reason.

    Things that you can do to help a friend or loved one who lives with CRPS:


  • Offer to visit, or take your friend on a low key outing for a few hours.


  • Socialising is a tricky thing when forced to factor in CRPS. Many people who live with chronic pain can’t drive, or can only drive short distances. Many can’t cope with public transport due to travel times, unpredictability, vibration and the perils of being delicate whilst in a crowd. Travel limitations can easily get in the way of friendships.

    Inviting people to come and visit can seem like hard work after years of living with chronic pain. Personally, it can feel like asking for charity, like begging for friendship. This is because I don’t have the ability to reciprocate the (much appreciated) effort of a visit.

    It can also be difficult to determine a time that is “free” during which I can arrange a lounge room chat-date. I recently wrote about how it can be difficult to take time out from doing very little. Making plans involves designating future time and time can be hard to find amongst all the pain managing.

    (This stuff might be news to you; this stuff is probably news to you. I’ve never really written about this before, not that I can remember)

    I usually want to see you, I just don’t always have the presence of mind, or resilience to possible rejection that’s required to organise a get together. Asking you over for a drink and a chat doesn’t seem like a particularly alluring invitation, which is a bit nuts because being on the reverse side of such an invitation sounds totally awesome.

    (I might have issues, friends, I just might)

    I felt bad taking your friendship, because I felt that I didn’t have anything to give back. I wasn’t recognising my own friendship as a thing, I was just seeing the practical and physical things that I can’t do. I couldn’t see past the effort that I was asking from you in asking you to come to me. Look, I’m either being silly or I was being silly, it’s hard to tell.

    (Aaaaand, this is why blogging is the best therapy that I know of. This was not planned, this little epiphany…they never are. Do you know me well enough to have my phone number? Please consider yourself invited over for coffee and a chat, text me, we’ll hash out the deets)

    There are so many people that I’d love to hang out with more often, if only I had to ability to go to them and, you know, if I could tolerate doing things more often. I’m going to try to not let my give-and-take issues get in the way of me asking you over anymore, please remind me if I forget.

  • Bring food.


  • Seriously, bring food. You know how in American soaps and sitcoms, neighbours are constantly showing up with food after bad stuff happens? That is an awesome thing. Grocery shopping and cooking are sometimes too physical for me to handle and I need help. This is fine when I have my lovely prince here, however sometimes I am alone and it’s not fine at all.

    Being an adult and asking somebody to come and feed you is not the easiest thing to do. I was having a hard time not that long ago and a friend texted to tell me that she was on her way, that she was going to cook and what did I need from the grocery store? It was basically the best thing ever. She cooked two healthy dishes that kept in serves and fed me for the next few days.

    It can be demoralising to not be able to take care of my own personal needs. Friends who understand this and help without being asked are utterly amazing. This isn’t an indictment on any of my friends who have never fed me, this is just a cool story about this awesome time that one did.

  • Consider transportation when inviting out a friend who has chronic pain.


  • It’s always so nice to receive invitations, however invitations that come with a personalised effort to check into whether or not I have transportation, or will need assistance to attend, are that little bit more special. It sucks to have special needs, but I do have them.

    It can be disheartening to have to rely on others for transportation, or to have them literally push me around in the instance that I need to use my wheelchair. I can’t manually operate a chair because I have CRPS in four limbs and I don’t have thousands to spend on an electronic wheelchair when it’s only for occasional use.

    Asking for this sort of help from friends can make me feel like a burden and often adds extra stress to my attempts at getting out and socialising. A couple of good friends really understand this, they offer me rides when they know there’s an event I might like to attend, they offer me their muscles and elbow grease to get me up and down ramps, they go out of their way to pick me up or drop me off. I appreciate their generosity and effort oh, so much, but it’s still hard to ask for it.

    Chronic pain chips away at independence and that’s a hard thing to lose.

  • Be understanding if your friend has to cancel plans at the last minute.


  • At some point, a friend with CRPS is probably going to cancel plans with you right before they were about to happen. This is because of the unpredictable nature of our condition, we can go from functioning to invalid in the space of minutes.

    Please try to remember that it’s not you, it’s not even me, it’s CRPS.

    It doesn’t feel very nice when people cancel on you at the last minute, I’ve experienced that myself and I hate that my health frequently forces me to be that canceller. It also doesn’t feel very nice to miss out on so many things, to have to stay home instead of going out and having fun. Neither sides of this coin are pretty; please try not to blame your chronically ill friend for not turning up to things.

    There’s an extra step that you can take here if you want to be sure your friend knows that you understand and still value them: tell them so. A text message along the lines of “I’m sorry to hear that, maybe we can catch up another time?” can leave me feeling less stressed about cancelling plans than the echoing silence of no reply.

    My condition mimics the nature of a dodgy friend. If I’m cancelling plans, I’m weak and probably a little bit emotional. It’s easy for me to feel excessive guilt over this and a little note that lets me know that nobody hates me for not turning up can help far more than I feel like it should.

    It’s my responsibility to take care of my own guilt (that’s why the “should”), this is just a tiny thing that friends can do that happens to help.

  • Send a text, or respond to a social media message.


  • This is the easiest one. This is the absolute easiest way to be a good friend to somebody who lives with CRPS: Simply let them know that you care.

    I spend a lot of time by myself and when the pain is bad and not much is changing, it can get lonely. Getting messages helps me to feel connected, even when I don’t have the strength to reply to them.

    I blog freely, so when I’m having a rough time, there is usually something on the internet about it. It helps to have people read and respond to what I write, even if that response is just a thumbs up, just a little sign that a friend was here. It can be hard to know what to say when your friends are feeling awful, but a simply “x” or “o” can really go a long way toward letting somebody know that they’re not alone, that they have been heard.

    The key to all relationships is communication.
    It’s a cliche for a reason, just like most cliches are.


    There are those who believe that a life with chronic pain or illness is too complicated to also include romantic relationships, or even friendships. I disagree, both intellectually and through how I live my life. I have fabulous friends, wonderful family and an amazing partner and I’m so grateful that they still want me in their lives, damaged or not.

    Do you have amazing friends too, Audy? I’d love to hear about the things that they do, or could do, to positively influence your life with chronic pain.

    Or, did you use to have some less than amazing friends? I’d love to hear those stories too, sometimes it’s easier to learn from mistakes than miracles.


    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 & Beaded Friendship Bracelets,
    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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  • From Weakness Grows Strength

    Dear Audy,

    I decided to take yesterday off from NHBPM and enjoy some time out at my youngest cousin’s 18th birthday. It was lovely to have a day off, however I have a thing for even numbers, so I’m going to whack out an extra post today and keep on track to get to the magic 30.

    Day 17 has prompted me to think about my strengths and weaknesses. This is always one of those subjective, confusing and seemingly more difficult questions to answer honestly.

    Click image for source, it’s a totally rad tatt design.



    People say that I’m strong all the time, they also call me brave. Living with a chronic illness such as CRPS is a hugely daunting challenge and those who have not experienced it can have difficulty imagining such a life.

    Being called brave for living life is a strange thing. Some people who live with chronic illness dislike being praised for it because they are just making the best out of what life has given them, they aren’t saving lives like firefighters or bomb diffusers.

    Personally, I think there are different forms of courage and choosing to survive and thrive every day is one of them.

    Some people don’t recognise “making the best of something” as brave, but I think it is. I know how dark and nasty life can get and it I believe it takes courage to live it.


    I think that everybody who seeks to make lemonade from their lemons is brave, it’s so much easier to just whinge about your sour fruit. It’s so much easier to accept a limit on what you can cope with than to fight to overcome even the toughest of trials. It’s so much easier to just give up than solve problems.

    Sometimes, I do feel strong and brave. Sometimes, I feel like a warrior, roaming through the battlefield of chronic pain and striking down whatever opposes me. Other times, however, I feel weak and tired and incapable of overcoming anything more than I already have.

    Strength and weakness are relative, just like good and bad. Neither can exist in permanent and total absence of the other. To be strong, you have to know what it’s like to be weak and vice versa.

    I do have strengths, I have things that I do more successfully than other things that I do. I also have weaknesses, stuff that I’m just not that good at. Living this dichotomy is a just a part of the human condition, it’s the ying and the yang.

    Listing activities and traits feels a bit arbitrary, so I’m going to boil this down to the truth at the bottom of each barrel:

    My biggest strength is my faith that there is always a way past the obstacles that life throws at me.

    My biggest weakness is self doubt, in all of its forms and sneaky appearances.


    It’s not all that complicated, really. I don’t have all the answers, but I recognise that fact and I continue searching, I think that’s a strength. When I’m feeling weak, my mind goes to places of fear and beliefs of insufficiency, places that I consider unhelpful to my overall existence and I think of that as a weakness.

    Strengths, weaknesses, bravery, cowardice, hope, fear…they’re all just labels at the end of the day. How we choose to interpret and implement these driving emotions is what’s important.

    Most of my strengths come from challenging my weaknesses, so were they weaknesses to begin with? Maybe.

    Or maybe, they were just strength triggers.

    Perspective is everything.

    What does being strong or weak mean to you?


    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 & Catch Ups,
    Caf

    P.S. Later today, I’m going to get stuck into an article on advice for people caring for somebody who lives with chronic pain. Tune back in this afternoon, Audy, it’s a manic Monday up in ‘ere!

    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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