Persisting Through the Humdrum of Daily CRPS Management

Aug 24, 2014 by

Dear Audy,

Hello! It’s been a while since I could write, CRPS affected hands will do that sometimes.

Since my last ketamine infusion in May, I have been devoting all of my time and energy to strengthening my body and mind. Sounds corny, yeah? Actually, no. Corn, in all if its manufactured graininess, it’s something that I’ve been avoiding.

My diet makes a huge difference to how much I suffer with CRPS and how much I just live with it. There is no perfect-for-everybody human diet and there are plenty of diseases that food can’t cure, however, eating things that make my body feel better instead of worse certainly helps me to cope with my CRPS. I feel like I have to say that before I talk about eating on account of people, in general, seem to take dietary discussion as dietary advice and dietary advice as personal attack. It’s OK, sensitive ones, what I choose to eat has nothing to do with judging you.

I follow a Paleo approach to my diet. I avoid grains, sugar and processed food. I scoff down animal fats in all their glory and throw up in my mouth a little if you offer me a diet soft drink chemical cocktail. I’m not a zealot, I just eat this way most of the time, when I can. For me, enjoying life while avoiding processed food involves a fair amount of cooking. Cooking is a physical, hand-powered thing, and consumes much of my time and energy. I don’t do it because I feel like I should eat healthy in order to hedge my bets, I do it because after a couple of crappy meals, I feel like crap. It’s that simple, really.

Cooking sounds like something that should just fit into a normal life, however there’s nothing very normal about living with CRPS. Even though I’ve had success in lowering my pain levels with ketamine infusions, I’m still dealing with a lot of hand and jaw pain. Those two areas tend to set each other off. Typing in the morning can mean not being able to cook in the afternoon. Talking too much can make my hands sore. I know, I’m like the epitome of logic, you should probably bow or something…

Anyhoo… My point is that simply trying to cook on a regular basis can mean I have to limit other activities that wear my hands out. It takes some careful mental maneuvering to keep cooking when I’d rather chase creative pursuits, however the results make it worth continuing.

When my body is fed right, it’s much happier about moving. This is a really awesome thing because bodies are made to move. I’ve been able to exercise frequently enough that I’ve actually improved my fitness for the first time in years. I have muscles in my legs. Do you have any idea how helpful it is to have muscles in your legs?! They’re awesome. I use them for standing. Standing is awesome.

My exercise regime mainly consists of riding my exercise bike, or walking and then upping the intensity a little. I ride for two 30 minute sets at whatever speed is comfortable that day. It took a couple of months of riding regularly before I had enough leg muscle to cope with walking, before that I’d just end up with screaming knees and ankles. Over the past couple of months, I’ve gone from barely being able to walk for 20mins to being able to wander through the bush for hours. The bush part is important because the fresh air and trees take care of my mind while the exercise nourishes my body.

These guys help too.

These guys help too.



I haven’t told many people this yet because I have trouble believing it happened…but…twice now…I have jogged during my walks. Jogging is practically running! I ran on my legs. I actually thought I’d never do that again in my life and now I just want to do it again, again. A long time ago, before I had CRPS, I learnt to enjoy running and was a genuine fit person. Important note: before consciously deciding to learn to enjoy it, I hated to run. As a kid, I hated tiggy more than anything. Ugh! So much running, so little strategy.

It turns out that my adult body is a whole lot smarter than my stupid kid mind. Running is awesome! I plan to do more running, however I’m allowing plenty of time for recovery between attempts. The hardest part in strengthening a CRPS afflicted body is walking that tightrope between too much and not enough.

The final challenge that I have been devoting myself to is weaning off medications. Medication can be great and I’ll still be reaching for painkillers during flare ups, however I want my system as clean as it can be the rest of the time. I need to be able to feel what’s happening in my body if I’m gonna keep improving it. Years of chronic pain treatment usually means years of swallowing pills. I’ve been on so, so many…my body needs a break. It will be interesting to feel if this makes a difference during and after the next ketamine infusion.

Dropping medications is a process. Some of them take weeks to feel and then weeks to stop feeling. I’m still a bit heady and dazed since stopping Cymbalta last week, along with being super sweaty. You can’t really understand the joys of withdrawal until you’ve changed your sweaty PJs three times in a night and then resigned yourself to trying to sleep in your gross wet spot, under a wet blanket because it’s 4am and your partner has to go to work in a few hours and there are no dry blankets. I know. Sexy was the first word that came to my mind too.

I’m really hoping to get better at balancing being functional with being productive, I miss writing regularly and interacting and not shying away from my inbox, however I have to keep prioritising my physical rehab for the moment. My hands and forearms are slowly learning to be flexible and how to strengthen, it’s just a very slow process when they’ve been out of action for years.

Love & Just Keep Swimming,
Caf

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    Ketamine Infusions: From Bad Reaction to Successful Pain Relief

    Jun 11, 2014 by

    Dear Audy,

    Thank you so much for all of the kind messages of support that I have received since posting Ketamine Infusion for CRPS: My Single Day Experience! It is so very wonderful to be feeling better and actually have good news to share with you.

    I’m still struggling a bit with concentration (you guys, I haven’t even been checking on my Sims regularly). I get a few hours of decent thought in here and there, however I’m mostly still focused on increasing my physical activity without injuring myself or causing a CRPS flare.

    I’ve finally gotten my kitchen mojo back and I’m back to enjoying yummy baked things that don’t make me feel sick and pots of healthy Winter stews. Tonight’s dinner is Orange and Fennel Chicken and is already in the slow cooker, so I’m free to use up all remaining brain power on whatever I like!

    Thanks to all of the wonderful people who have shared my last post, I’ve been lucky enough to come across social media comments from a variety of different readers. Several have been kind enough to share their own experiences with ketamine infusions for chronic pain. Sadly, many of these have been tales of horror and hallucination, with memories of distress and despair.

    The strangest thing about reading these stories is that, even though I am now lucky enough to be responding well to ketamine, I was once the patient who had the terrible infusion and then lost all hope. I think this might be a rare position. Ketamine infusions can be difficult to access and dangerous. A failed infusion can mean the end of the line for this method of pain management, it certainly meant that for me for almost five years.

    Nothing about this post should be interpreted as medical advice. I am not a doctor. I have no way of knowing whether ketamine infusions can help you, or your loved ones. I am simply sharing my story because it’s true and it happened to me and I feel like awareness grows bigger with every new and different patient story that’s out there.

    In 2009, I went into hospital for a 10 day ketamine infusion. It was my first time trying this medication and things did not go very well. I don’t need to explain this story to you, though, because I’ve brought in 2009 Caf to do it for me…



    Yeah…it was awful. It’s not easy to watch that video now, to see myself so disappointed and lost. I remember that feeling of hopelessness with every cell in my body.

    Side notes:

    1. I never did get that medical history from that particular doctor. I never had the strength to chase it up. Sometimes, I wonder if dodgy doctors who give up on complicated patients rely on this. Sick people just don’t always make the best follow-up-erers, they’re too busy being sick.

    2. I still have pain that is specifically from that blood test that I mention right before my mitten becomes a puppet (of course it does, the me in me runs deep). It still flares as though the needle was puncturing the skin yesterday. So weird, body. So, so weird.

    And so, you see, I was once this person who had a terrible reaction to ketamine. I heard stories from people who had had positive reactions to their ketamine infusions and were gaining back huge pieces of their lives and, oh, was I jealous! I couldn’t understand why I wasn’t one of the lucky ones and part of me resented anybody who was, despite my efforts to quell these feelings. Understanding that envy is a useless emotion to indulge, those feelings of jealousy eventually just lumped themselves on top of all the other reasons that I found to feel depressed and hopeless.

    I was in horrible pain, 24/7. My CRPS kept spreading even though spread was supposed to be a “rare occurrence”. None of the pain medications helped. I finally got to try the holy grail of CRPS treatments and I ended up worse. Everyone with CRPS seemed to be finding something that worked for them except for me (not true, but it wasn’t a rational mind that was generating this thought stream). My future felt destined to be bleak and I couldn’t think of any way to make it better.

    Now, I am this person who has been receiving regular ketamine infusions that have been helping me to regain a lot of function in my daily life and have helped me to learn how to feel hope again. It’s weird, I don’t have any explanations for why me, or why now, or how the same drug could have such different effects. I don’t know any of the whys and hows, I’m just enjoying this upward swing in my life’s journey and hoping that it continues.

    I don’t know if any other patients with CRPS have experienced this reaction to ketamine, or something like it. Please leave a comment if you have, I’d love to hear from you!

    I don’t know if the fact that this drug didn’t help me and then did help me when administered differently can be of use to other people with CRPS. I’d suggest talking to your specialist if your story is similar to mine and you are interested in pursuing a new try at an old treatment. I have to doubt that I am the only person to have reacted this way to multiple infusions, or that would react this way if given multiple infusions.

    I might be special, I might not. Nobody can answer that without some extensive and expensive clinical trials. I am just a storyteller, so take from my experience what you will. I’ll keep sharing my story as it happens and maybe together, we can learn some stuff.

    This is my story, it’s true and it happened to me.

    Love & Reflection,
    Caf

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    Ketamine Infusion for CRPS: My Single Day Experience

    Jun 9, 2014 by

    Dear Audy,

    It’s been over two weeks since I had my first single day ketamine infusion to help with the pain of CRPS and I think that I finally have a decent understanding of how it has effected my body…

    Very, very well!

    I started seeing a new pain specialist at the end of last year, who listened to my long, troubled story of failed pain management before validating my belief that, years before, I’d been misdiagnosed as having an allergy to ketamine. Thank goodness for that!

    In October last year and February this year, I went into hospital for 5 day, subcutaneous ketamine infusions. Both were successful at lowering my pain levels and allowing me to increase my ability to function on a daily basis. If you wish, you can read about the experiences of these infusions here and here.

    There are a couple of drawbacks to enduring a 5-day ketamine infusion. Firstly, that’s 5 days in hospital and with the plastic covered mattresses, 24 hour noise and the need for regular checks from nurses. Hospital is not a particularly relaxing environment. Secondly, it’s 5 days on a mind altering drug, which is like some sort of medically sanctioned bender and a 5 day bender of any sort is going to take some recovery time to get over.

    Both 5 day infusions took about a week of almost constant rest and symptom management afterward before I could appreciate the benefits. This time involved very heavy fatigue, an inability to form useful thoughts, a lot of twitching and many sudden attacks of sweating. Between the preparation, actual infusion and recovery, each 5 day ketamine infusion involved 2-3 weeks of time spent away from my usual activities.

    Which was all totally worth it. A break from CRPS pain and symptoms is a rare thing to experience and is worth every effort that it takes to make that happen, however, what if the same results could be achieved with less fallout?

    With this in mind, I quickly agreed when my doctor suggested that I try a single day infusion to see how I coped with that.

    I showed up at the hospital at about 8am and after a couple of hours of being organised by nurses, I found myself with a bag of ketamine slowly dripping into my belly. Just not quite as slowly as during the longer infusions, which began at a dose of 2.5mg of ketamine per hour that was increased regularly over the 5 days. With only 10 hours to absorb the pain relieving goodness, the ketamine dripped in at 10mg an hour.

    It only took a few hours for my pain levels to drop significantly and for my brain levels to drift away into la la land. I spent most of the time snoozing and listening to music. I was disconnected at about 7pm and then went home at 8pm.

    Coming home with a brain that felt like it was floating outside my head was a strange experience. I got nauseous during the 5 minute car ride and promptly threw up as soon as I got home, after which I felt quite wonderful. My pain was super low and I felt like I was dreaming. I quickly got myself to bed to sleep off the rest of the weirdness.

    The infusion took place on a Friday. On Sunday evening, I was feeling almost as well as I had a week after the 5 day infusions. Pain levels stayed low, moving became easier and the post ketamine fatigue and twitches were barely bothersome at all. By Monday morning, I was ready to continue my regular routine of physical rehabilitation and chores, all with less pain than I am accustomed to.

    The most wonderful thing about a single day ketamine infusion is that I’ve been able to continue living without feeling like a huge chunk of my life has just been spent in hospital and recovery, yet I have pain relief that is on par with that sustained after longer infusions. It’s such a good result that I have trouble believing it’s real, I’m just doing my best to enjoy the pain relief and keep increasing my strength while it lasts.

    Last weekend, my prince and I got out of town and attended a friend’s wedding in the Victorian high country. It was wonderful! The cold mountain air agreed with me and I hardly found myself hindered by pain at all, other than during the drive up when CRPS got a bit angry about how much a car vibrates and that I was insisting on being in one for three hours.

    At the wedding, I was able to stand and drink and chat and dance and drink! It was wonderful! I felt so delightfully normal. Pain levels were higher the next day, but not off the charts, I was still able to keep moving and functioning.

    Me as a wedding guest

    Me as a wedding guest



    After returning home, I had to spend a few days resting off the aches and pains of the dance floor. I was pleasantly surprised to find that a little bit of rest was all it took to have my pain levels lower back down again and by midweek, I was back in full swing on the exercise bike, walking and increasing my strength.

    My mind, however, refused to participate. The strangest thing about last week was that even though I was physically able to more than I had been in weeks, I was mentally able to do very little. I…just…couldn’t…concentrate. Instead, I did my best to focus on the physical stuff and assumed that my thoughts would return when they were ready.

    Which, they did. At least I think they did. Look, either my mind is working again or coffee has figured out how to actually puppet people instead of just powering them and we are all doomed to a future of coffee-borgs. Eh…I’m pretty happy with either of those explanations.

    I’m so happy to be in less pain than pre-infusion that I’m pretty much happy all the time. It still feels strange. It feels strange to be able to keep going, keep moving and keep building a healthier body for future CRPS battles. It feels strange to be able to exercise until I am actually sweating from working hard rather than sweating for no reason other than nervous system malfunction. It feels strange to be tired from actually doing things.

    It’s a happy strange, so I’ll just be over here, rolling with it. How long will it last? Who knows. I’m just so glad that the shorter ketamine infusion worked and that I can now look forward to pain relief without all of that overnight in hospital business. Hurrah!

    Love & Sweat beads,
    Caf

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    This Daily Telegraph Article is Laughable and Terrifying

    May 22, 2014 by

    Dear Audy,

    This morning, I happened upon an article that is so ridiculous that I had to giggle at the fact that something so absurd had been written and then published as news. It was published on The Daily Telegraph.

    NSW Disability Support Pensioners now outnumber Australia’s total war wounded by more than 44,000 – Exclusive by Geoff Chambers


    At first I shrugged and figured that nobody would be silly enough to buy into the propaganda being sprouted in this article, however, then I had the horrible realisation that yes, they will.

    I read some of the comments and had the equally horrible realisation that for every bigoted and ignorant person that took the time to comment, there were probably many more who shared these warped opinions and were just nodding along, silently blaming sick and vulnerable people for being sick and vulnerable.

    Often, opinions are presented as news using manipulative language to mould the opinions of an audience. The theme of this particular article is to persuade the Australian people that many people, particularly young ones, who receive the Disability Support Pension are simply bludgers who don’t understand the concept of hard work.

    As a young person who relies on the DSP, it’s hard not to take this slander personally. These accusations effect real people. Real people suffer because of this kind of ignorance. Some real people take their own lives.

    I decided to take some time to write down why this article reads as absurd in the hope of reminding you why you should always look closer at the ways in which news and opinions are presented. Almost anything can be spun into something else.

    Click image for source.

    Click image for source.



    Chambers’ article begins with an image and provocative caption.

    ‘Slackers and slouch hats…’

    What is shown is a photograph of some people standing in a line. You are supposed to assume that this is a line of people waiting to receive their Disability Support Pension, but really, it’s just a line of people. Maybe some of them do suffer from disabilities, but you can’t necessarily see that. A more accurate representation of people with disabilities would include more crutches, canes and wheelchairs, however this image is being used to manipulate you into accepting the journalist’s opinion that people who rely on the DSP are “slackers and slouch hats”.

    What’s a “slouch hat”? It’s an actual hat that goes on your head that is worn by the Australian military. It’s not a term used to describe a person on a disability pension, or even a lazy person for that matter, it’s an example of how clever this author is being with all of his army comparisons.

    ‘NSW Disability Support Pensioners now outnumber Australia’s total war wounded by more that 44000.’

    NSW DSP Recipients: 270,415
    Nation’s War Wounded: 226,016


    There is no reason why these two figures are or should be comparable. There is no reason why the current number of disabled people in New South Wales should be less or greater than the number of Australian’s wounded in foreign conflicts since the 1880s.

    Chambers is using this comparison to manipulate you. In this instance, you are supposed to be an Australian who is proud of soldiers and who views war as a necessary evil, therefore you view the people who go and fight for your country as heroes and thus any sort of disabling injury that they obtain in doing so is tragic and they deserve the respect and support of their nation.

    This image of a tragic hero is being used to contrast with an imagined image of a person with a disability, who obtained their disability without fighting in any wars. You are supposed to consider that a war hero is a more valid human being than a person with a disability.

    Twice, in bold, Chambers informs you that almost 20,000 people have joined the “disability welfare line” in the past three years. Apparently, this is the equivalent of five Australian army brigades, which is as relevant as pointing out that 20,000 people is the equivalent of 20,000 people.

    This figure is included to manipulate you into assuming that the number is very large and that not that many people could be genuinely disabled, even though there is no reason why this number should be higher, lower, or exactly this amount. Nature doesn’t have any rules about how many human beings can be disabled at any one time.

    In addition, you are being informed that ‘The size of the number of DSP recipients in NSW is double that of Ukraine’s active army personnel and exceeds the population of Pacific Island states, including Vanuatu and New Caledonia’.

    These comparisons are entirely random. You are supposed to respond to this information by thinking “Wow, that’s a lot”, because Chambers is just comparing a number to smaller numbers. The amount of active army personnel in the Ukraine and the populations of Vanuatu and New Caledonia have nothing to do with one another, let alone anything to do with the number of DSP recipients in one state in Australia.

    Chambers is quick to point out that the DSP claims for physical injuries have decreased since 2001, yet claims related to psychological and psychiatric conditions have increased dramatically. This is supposed to make you believe that a physical injury is more valid than a mental illness.

    This concept is quickly backed up with some big numbers, because big numbers are scary and Chambers is really hoping that you don’t understand statistics and will simply be terrified that more people have been counted with mental illness than have been counted with physical illness.

    ‘Since 2001, successful mental health claims for the DSP have jumped from 140,965 (22.6 per cent of overall claims) to 256,380 (31.2 per cent of overall claims). In comparison, the number of musculoskeletal and connective tissue recipients decreased by almost 17,000 claims since 2010.’

    These figures are being included to further sway you into believing that “most”, not “some” of the mental illness DSP claims must be fakers. They absolutely must be people “rorting the system” because 256,380 just seems like a really big number compared to 17,000.

    Once again, I must remind you that there are no rules about how many members of the human race, in one particular area of the Earth, can be simultaneously suffering either psychological or physical disability.

    Along with being blinded by the big numbers, Chambers is also hoping that you take on the point that he is hammering home, which is that a musculoskeletal or connective tissue disability is somehow more valid and disabling that a mental illness.

    There is no reason why these two states of disability, these two states of being a human, should be directly comparable, other than that there is only one pension payment that is designated to care for people suffering from either type of disability. This, in itself, is a failing of our current welfare structure because the support and cost of living with a disability is highly variable depending on each person’s individual symptoms of disability, be those physical, psychological, or both.

    Oh yes, a person can be living with both a physical and mental illness. There’s this thing that happens after bad stuff happens, you know, when human people have reactions. Becoming physically disabled is a traumatic experience and the huge lifestyle changes that come with such a transition can cause disabling levels of Depression and PTSD, for example.

    ‘Regional NSW and western Sydney are fuelling welfare ­increases across the state, with more than 483,000 people now relying on payments from either DSP or Newstart Allowance, better known as the dole.’

    Watch out! Chambers has dropped another big, scary number! This time, he’s added together the amount of people claiming the DSP and the amount of people claiming the dole – which you are supposed to believe is only for lazy people who don’t want to work. The author isn’t saying this directly, he’s just throwing the big number out and expecting that you will jump to the conclusion that DSP recipients must also just be lazy people who don’t want to work.

    In case you couldn’t jump to this ridiculous conclusion all on your own, Chambers has then gone on to include a bunch of places where more people who live on the DSP reside than in other places. Apparently, the highest concentration of DSP receivers is in Sydney’s west, which Chambers describes as a “welfare wasteland”, as though it is a place where lazy people go to laze around instead of working.

    Another explanation for a large amount of disabled people living in one area is because they share a level of poverty and the cost of living in this area is lower than in other areas of NSW. The cost of rent in Western Sydney is lower than the CBD, or the northern suburbs, perhaps this is why more people on a limited income are residing there.

    ‘Social Services Minister Kevin Andrews said changes announced in the federal Budget would help people back into the workforce and help ease psychological pressure on jobseekers.

    The DSP, an income support payment for people ­unable to work for 15 hours or more per week due to permanent physical, intellectual or psychiatric impairment, has seen a spike in recent years of psychological claims.

    “More stringent payment conditions and activity ­requirements are essential to ensuring the sustainability of our income support payments. Support must be targeted to those in most need,” Mr Andrews said.’


    This is further jargon to ensure that you come to agree with the Chambers’ belief that physical disability is more valid than mental disability. This is propaganda designed to stigmatise mental illness as something that is a choice, something that is the fault and ultimately sole responsibility of the sufferer. Stigma plays a huge role in the life of a person living with mental illness and limits them further than their illness already does.

    Propagating the stigma around mental illness is a way to dehumanise those people who are living with it so that other, more privileged people can continue to enjoy their privileges without paying to support people with disabilities that those who are privileged do not want to accept as real.

    Have you ever considered that mental illness might be a greater obstacle to being able to work than physical disability? That there are no mobility aids for a person’s mind?

    Following on from this intentionally inflammatory article is another story describing a DSP recipient, Dean Burlock, who lost an appeal to have a suspension of his payments overturned after he surpassed the length of time he was allowed to stay out of the country without breaching his disability support requirements.

    ‘AAT member Dr Marella Denovan said the reason given by Burlock, who lists his address as Cairns on social media, for why he exceeded a six-week “portability period” when a DSP recipient can travel overseas was implausible.

    Burlock claimed he became seriously ill while staying at a Los Angeles hostel in April last year while trying to find acting work. He said pollution and a “flu-like” infection caught from other people in his hostel had triggered the illness.

    “He went clubbing with other residents, however had to stop when he became ill,” Dr Denovan wrote in her decision to uphold the suspension.

    “Mr Burlock claims these symptoms were so severe he was unable to travel.”

    The sudden illness occurred two days before the end of the portability period on May 20 and Burlock did not see a doctor until June 21.

    Dr Denovan described Burlock as not being “a credible witness” and upheld a recent decision to suspend his DSP.

    Burlock, who disputed he was looking for work in the US, said he had “no comment about the matter” and that he was “happy with the decision”.

    The Daily Telegraph understands the pension is suspended but not terminated. Burlock would not confirm why he was on the DSP.’


    This entire example of a person who is supposedly rorting the system is an invalid argument for anything because Burlock has chosen not to reveal exactly how he is disabled. The nature of his illness is the only factor that can explain whether or not pollution or a flu-like virus could incapacitate him so badly that he couldn’t travel.

    Such a thing is very, very possible. I speak from personal experience, as somebody who lives with Complex Regional Pain Syndrome, a condition that effects my entire nervous system. My body can allow me to function sometimes and be unable to get out of bed at other times and my state at any given moment is not predictable. My symptoms are greatly influenced by the weather, I have increased sensitivity to chemicals and toxins and any sort of viral infection can incapacitate me for weeks.

    The unpredictability of my condition means that I could be well enough to go out one night and then be unable to move for weeks. I also wouldn’t rush off to see a doctor because doing so can be an expensive waste of time for people with chronic illnesses who already understand what is wrong with them and that medical interference is not going to help.


    Chambers states that Burlock was in Los Angeles looking for acting work and then later includes that this fact is disputed by Burlock. This is Chambers making an assumption about Burlock’s intentions and then including this assumption as though it is fact. This inclusion is also designed to make you look down on Burlock because he is an actor, who reportedly went clubbing.

    Chambers is hoping that you will find such careers and ventures as frivolous and undeserving of support. He is hoping that you have such limited understanding of disability that you assume that somebody who is unable to work is also unable to do anything, anytime. He is hoping that you don’t realise that there is a huge range of how disability can impact on a life that is much more complicated than simply “bedridden or able-bodied”.

    Chambers is hoping that you will use the limited information that he has included about this case to label Burlock as a person who has rorted the system without ever wondering if the appeal that was overturned was in any way mishandled, influenced by stigma, or influenced by the limited medical knowledge of those wielding the power. Because no judicial system has ever been corrupted, insufficient or ruled by bias, right?

    Why was Burlock considered to not be a credible witness? We really know nothing about this case other than the tiny parts that support Chambers’ message that Burlock is a faker.

    Chambers’ final inclusion in this article is to include the opinion of Indigenous leader Warren Mundine regarding levels of youth unemployment. This section of Chambers’ article is about an entirely different issue to the disability support pension, however he is hoping that you’ll read it as related and in support of his topic.

    High levels of youth unemployment and high levels of unemployment amongst people with disabilities? It simply must be laziness. It must be faking. It must be the fault of the people living in poverty. There’s no way that this could be the result of problems within society rather than within individuals, that would involve more government responsibility and less ability for them to shift the blame onto vulnerable members of the community.

    Chambers has ended his article by including a quote from one young person who is super motivated and willing to relocate to better his opportunities for employment. This is supposed to make you think that such a relocation is possible for everybody who can’t find work, including those people living with disabilities. This is supposed to lead you to believe that people who can’t work, or can’t find work, are unmotivated and that the whole problem is as simple as that.

    In light of the recent Australian budget announcements, I am not surprised to see an article like this on a famously trashy news site. However, I worry about the number of people that read articles like this and simply take for granted that what they are being told is true, indisputable and is simply a story rather than a very calculated vehicle for a writer or group to push their own agenda.

    The sick and disabled are not the people who deserve to be blamed for Australian budget issues. Don’t buy into the propaganda. Don’t believe the hype.


    Our society might yet be brought down by laziness, but it won’t be that of people who are disabled through no fault of their own. Even those people who do happen to rort the system (likely fewer than you are lead to believe, but we don’t have real statistics on this, just easy accusations) won’t be to blame.

    Personally, I’m far more afraid of the laziness of the masses that allow the people in charge to oppress particular groups in our society, the laziness of people who don’t want to learn anything, or fight for the weak, or care about any cause that doesn’t affect them directly.

    Those are the slackers and slouch-hats that we should really be worried about.

    Love & …well, nothing, I’m obviously too lazy to give you an and
    Caf

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    Finding Motivation in Spite of CRPS Pain & Painbrain

    May 19, 2014 by

    Dear Audy,

    It can be the easiest thing in the world to do nothing when I am feeling like crap. The pain of CRPS can be so overwhelming that all I want to do is hide out in the fantasy realms of my distractions. I don’t mean to say that it’s easy to just lie around when my physical suffering is amped up, “easy” is not the right word for that at all, however doing nothing during flares requires much less motivation, concentration and determination than the mountainous task of doing something.

    It’s a glarey-flarey kind of day today. The sky had a bit of a sook earlier and then the sun came out to chase away the rain. Annoyingly, the rain ran away to hide under my skin. My body really hates unexpected guests so there’s been a lot of yelling, signals are being thrown around and all sides are taking blows.

    Shut up, weather!

    Shut up, weather!



    The past week has brought so many of these battles, each day it has been a little bit harder to not relinquish control of my life to the battering. I cling to my little somethings, my tiny victories, and I revel in my shining achievements. They might be laundry, or cooking, or simply eating or showering. They might just be little somethings, but they’re mine.

    It’s not enough to do nothing, not when there’s a chance that pushing through the pain might not make anything worse. Sure, I mean it might, doing things might just leave me in more pain with less functionality, but I need to keep going as though it won’t.

    Doing nothing for fear of consequences, even in the face of very real risks, is still acting from a place of fear. It’s allowing fear to dictate my behaviour, which is basically the definition of being a scaredy cat and I am not some silly little feline. I’m a bigass, king of the jungle type of cat. You can tell by the spots on my bra.

    Look, it’s not my fault that the designers-that-be brought leopard print back. I have to shop cheap.

    The point is that if I let fear of pain rule me then I might as well just curl up in a corner and forget about living. Pain is just a part of CRPS and since that’s not going anywhere, I need to be able to push on in spite of it.

    The way to do that is carefully. It’s not a reckless, throw cares to the wind and just get things done sort of motivation. I’m not trying to invite further pain here, I just want to keep momentum in my life by overcoming the pain I’m stuck with. I have things to work on and goals that I’d like to achieve and I’ve learnt from experience that none of that happens if I simply stop trying when things get rough.

    Over the years, I have gotten better and better at moving through physical pain. Of course, sometimes the flares are so blinding that I actually can’t do anything and at those times, doing nothing isn’t an option, it’s just the way of things. Other times, the pain is excruciating and yet I manage to find ways to move through it, to stand on burning feet, talk with burning cheeks, or type with burning fingers.

    The human body is pretty amazing at adapting. Pain is a perception and perceptions are things that can be altered. CRPS involves a malfunctioning of the pain system. Instead of being like a fire alarm that alerts authorities to the beginnings of a burny, smoky catastrophe, CRPS is like a fire alarm that some kid in your class tripped because he’d rather go and stand on the school oval than take a maths test. Both are loud and disruptive, but only the first instance is a real emergency.

    To move through my pain, I have to convince my mind that there is no fire, whilst also considering that at any instant flames could actually break out if I do something that triggers a flare. It isn’t a case of convincing myself that the emergency isn’t real, experiencing a realisation and then I can do anything after that. Chronic pain fluctuates a lot and every time it starts to increase, the alarm system goes off and must be recognised and dealt with once more.

    Confused? Yes. Living with CRPS is very confusing.

    Overcoming physical pain in order to function is only one part of what I need to do in order to get motivated. I also need to overcome the painbrain, the jumble of disconnectedness that invades my mind along with all those unnecessary pain signals. This can often be the more difficult task.

    How can I function if I can’t even think?!

    I’ve realised that I need to be able to work around painbrain in little steps, cautiously and determinedly, just like the way I approach working around physical pain. If I wait until I am thinking clearly then I will hardly ever write anything, or read anything, or learn anything. And I happen to like writing, reading and learning very much.

    It’s been a matter of lowering my standards. Life is not about all or nothing. Not every blog post has to be a masterpiece, not every draft needs to be published. Not every status update needs to be perfect, not every email, not every comment or reply, definitely not every tweet.

    If I’m being authentic in what I’m trying to communicate then most points seem to get to their destinations. If I’m feeling too cloudy to process communication for a while then I simply don’t have to communicate then. The more I practise, the better I get at reading my moods and recognising when I might not be processing information properly and could stand to take a little time out. The trick to maintaining momentum in spite of regular time out is to keep awareness of when my sanity starts to trickle back in and to just embrace it without fear that it will abandon me once more.

    It’s too easy to mentally switch off and then just leave the system down. Especially in Autumn, when the mornings are so very painful. In trying to work around painbrain, I need to keep finding motivation to check in with myself because my state changes. I might end up writing or studying at weird and unexpected times of day, but that’s fine, that’s wonderful, that’s a million times better than not writing or studying at all.

    Reading doesn’t always need to be fast or complicated. Sometimes my eyes will skim along the lines, gathering every letter, ingesting every nuance of what I’m reading. Other times, none of the words seem to make it into my head, I have to backtrack every few lines, I have to actively visualise what I’m reading in order to see it, to remember it. Both of these times are OK, they’re just different.

    Not being at my best doesn’t have to mean not doing at all.

    This is one of those lucky days. My hands are only slightly more pained than when I began typing, probably an 8/10 for those who like ratings, but my fingers are still obeying my commands and so I can cope with that. I’ll rest them shortly. My disjointed thoughts seem to have aligned themselves into a blog post that ended up making sense and won’t be lost to the file of forgotten crazy rambles.

    I need to rest now, but I’ve done it. I’ve done something.

    I’ve totally earned a break in my fantasy realm of distractions, no guilt or sadness necessary.

    Do you find painbrain as difficult to navigate around as physical pain? What methods do you use to try to overcome this?


    Love & Cheerleader Kicks,
    Caf

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    How Weather Influences My CRPS Symptoms

    May 15, 2014 by

    Dear Audy,

    It has been a very flarey week. Just when I start to recover and function after the weather changes, it decides to change again. I know, I know, I live in Melbourne, which is famous for its four seasons in one day tricks.

    The evil sky.

    The evil sky.



    Whenever I explain to somebody how much the weather influences my pain and symptoms, I am told that I should move to somewhere with a more stable climate. These are not ill intentioned suggestions, it’s simply that people like to solve problems and when the problem is weather, the first solution is moving. I have heard this from more people than I can even remember, both loved ones and strangers. Relocation destination ideas have ranged from Queensland, to Tasmania, to Perth and all the way over to Canada.

    Unfortunately, relocation is not currently an option for me. I require a lot of help and that means that I need to be close to family. I have finally found a wonderful pain specialist who is helping me to improve my quality of life using ketamine infusions. People literally search the world for the right specialist to help their complicated medical conditions, so when one is found it’s a good idea to hold on to them. I also have very little money and from the looks of the new Australian budget plans, I’m going to have even less. Relocating is expensive and just not a feasible option at this time.

    If a rich person happens to want to fund my move to a place where the sea air is rich and the clouds are few and also fund my flights back for medical treatment then sure, I’ll move. Come at me, mysterious rich people.

    Until then, I’m stuck here in Melbourne, where the weather comes in beautiful and sudden waves that bash me around like dislodged seaweed.

    How does weather affect me? Let me count the ways…all of them. All the weather changes, all the CRPS symptoms. It’s all of them.

    Heat sets me alight with burning from my bones right through to the place that my skin stops being my skin and the air around me begins. Sometimes, the burning is explosive, like fireworks or nuclear missiles. Sometimes, it’s more tingly, like an itch that I just can’t scratch. Usually, it feels like I’m covered with the sort of sensitive skin that you might find under the fluid of a blister that you happened to pop and pick at. Sometimes the burning is concentrated in specific areas, usually it’s everywhere or on its way to everywhere.

    The cold sinks into my joints like it’s been directly injected. It’s an aching like no other. A chill that I can’t warm up, can’t escape. When I do start to get warm, my body overreacts and suddenly I am sweating, burning and freezing at the same time. I feel as though I’m aware of every joint in my body and that they are all made of razor wire instead of cartilage.

    Humidity causes my body to puff up as though it’s preparing to float away. Anywhere that can inflame, will inflame and that’s basically most of the wheres in the body. The inflammation burns and aches and cannot stand the lightest touch and gets upset about clothing and movement and is basically just a whiny jerk.

    These probably sound like rather severe reactions, however there doesn’t need to be a severe weather change to set them off. The slightest difference can do it, the slightest changes in air pressure and those other atmospheric things that happen when the weather changes that I don’t fully understand.

    Along with the different types of pain that I have to navigate my life around, there are some fun extra challenges that come with a malfunctioning nervous system.

    Any of the weather related flares described above also bring increased, sometimes crippling fatigue. You know, can’t physically pull myself up from the floor fatigue. It’s not even relaxing, like fatigue should be, because many of my muscles tense in reaction to pain, or twitch, or spasm, or have me rolling around because I can’t get up and I can’t stay still.

    Then there’s the symptom that child-me would have simply referred to as being “unco”. Signals in my nervous system aren’t all getting to where they need to go. Some of them need to go to Hell and instead they just keep bouncing around my neurons, but some of them need to go to parts of my body that I’m trying to move and they just…don’t…quite…get…through…and then I bump into the doorway instead of walking through it. Or, I drop the glass instead of placing it on the bench. Or, I whack my arm on the wall instead of just grabbing some toilet paper like a regular person. You see, there’s really no better way to describe this than unco, except maybe unco to the max.

    Always, CRPS flares bring the painbrain. Spellcheck tells me that painbrain isn’t a word, but I assure you, it’s a very real thing. Brains are ridiculously special and powerful and a little bit magical, but they still can’t do everything at once. CRPS means that my nervous system gets flooded with signals and my dear, sweet brain simply can’t interpret them all at the same time. However, that doesn’t stop it from trying and the result is a disconnectedness between thoughts, gaps that don’t belong and strange black holes that swallow the word that I was going to say and spit out something irrelevant like “capybara” instead.

    Not that capybaras are irrelevant, they’re basically as magical as unicorns and llamas, it’s just not helpful to say “capybara” when you actually mean “carrot”, or “vacuum”, or “please can you make me a cup of tea”.

    There are plenty of frustrating things about living with CRPS, however, not being able to control the weather is very high on the list. I am the sky’s puppet, whether I like it or not. I can’t fight the sun, or the moon, or the air. I can’t scare the clouds off by barking madly like my fluffy dog has tried to teach me to do. All I can do is manage my symptoms and try to minimise the flares by being the strongest version of me that I can be.

    That’s the whole point of me writing today at all, because the strongest version of me can do something, even just a little thing, to keep herself sane while the warm winds cause havoc in her body. She can explain some symptoms to you and maybe you relate, or now understand her a little bit better. She can type for a while, even though it burns and she can find a sense of accomplishment in having written something today, even though she’s not sure it’s made sense until the tenth re-read beams some sort of clarity through the fog of painbrain.

    The strongest version of me can’t push through anything, she’s not Supergirl, but she can push through this particular obstacle on this particular day.

    And I’m proud of me for that.

    Do you live with chronic pain or illness? How do weather changes affect you?


    Love & Gritted teeth,
    Caf

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    Taking on Autumn like a Viking

    May 5, 2014 by

    Dear Audy,

    I’m back! I’ve missed you guys. Sometimes blogs get sick, just like people do, but it’s OK, Rellacafa is feeling much better now.

    As for me, I’m feeling pretty run-down and determined. They aren’t the most obvious of emotional state friends, yet, here I am. My feelings are like that polar bear and wolf that play together, the ones I spent a lot of time awwwwww-ing at earlier today.

    Autumn tends to take a massive toll on my sensitised nervous system, however I refuse to let it plummet me into the depressive depths of this time last year. I’m going to stand up here on the surface and take my beating like a warrior. A sexy, viking warrior. Like Ragnar Lothbrok. I’m going to take this battering just like Ragnar would. Mmmmm, Ragnar.





    OK.



    OK, I’m back. Sorry about that. I watched the season 2 finale of Vikings last night and now my head is simply full of it. I’m going to miss those brutal spunks.

    Wait…

    Ragnar Lothbrok


    OK. Now you get it.

    A couple of days ago, I went on adventure that involved me driving to the city, which is approximately one album away from where I live. Regina Spektor’s “What We Saw From the Cheap Seats” for the drive in and Lissie’s “Back to Forever” for the drive home, if you must know. And yes, I did sing along the entire time because as far as I’m concerned, that is a very important part of being a good driver.

    My adventure took me to a writing workshop about sharing invisible lives and telling personal stories. Stories like yours, stories like mine. Most stories are interesting if you tell them in the right way and I’m a firm believer that we can always learn to do things better. Except maths. Once you do the maths right, that’s about as far as maths can go. Your thing equals the right thing and then you win. Maths is pretty boring like that. Which is why I like stories much better.

    As an added bonus, I had the pleasure of meeting Michelle from Living With Bob (Dysautonomia). It’s wonderful to meet internet friends in real life! Us bloggers with chronic pain and illnesses rarely get the chance to do so on account of that involves at least two of us being well enough to leave the house and socialise on the same day, a phenomenon with a similar occurrence rate to solar eclipses. I guess. Let’s not pretend that I know anything about solar eclipses, I just assume they’re really rare because the sun doesn’t disappear from the sky that often. Except at night, but we’re eclipses, not sunsets. We’re special.

    Michelle Roger and Hayley Cafarella


    It was lovely to go and talk about writing with other writers, it made me feel more like one of them. In spite of having to work around constant pain and setbacks, I feel very strongly that it’s important for my sanity that I keep writing. Social events like workshops can be great for getting re-inspired or finding a new perspective on things. As someone who is often secluded from the world, I have some inside knowledge about how important it is to get out and experience different things whenever possible. I will share it with you now: VERY VERY IMPORTANT.

    I also think that learning in general is very important. For this reason, I have started one of those free, online university courses. You know, the ones that pop up in your social media feeds and guilt you into feeling like you don’t try hard enough at life. I thought I’d try one of those. I want to put new stuff in my brain and I don’t have the funds or functionality to attend actual classes of any sort right now. I’m learning about neurobiology, because aside from being relevant to my every day life, it’s just plain interesting to me. I’ll let you know how I go…

    And that’s it from me, for now. I shall now get back to the business at hand, or, to be punny and specific, in my hands. That business involves trying to figure out what temperature it is and how much swelling and pain determining such things requires. CRPS is the mystery that just keeps on giving. It’s a mystery that’s bigger than today. Which makes this whole paragraph a fancy way of saying that I’m going to stop writing and watch TV.

    Love & I Have Returned Hugs,
    Caf

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    Fighting My Way Forward & Sailing Away

    Mar 17, 2014 by

    Dear Audy,

    Ever so slowly, I weave my way through more and more activities which, when lined up in a row, spell “functioning”.

    They’re the strangest feelings, the ones that come after doing things. Pleasant but partly opaque, difficult to distinguish and define. Feelings like accomplishment, value and joy seem like strangers when they return from a lengthy spell of absence. It takes practice to appreciate their light when it comes shining through the dense fog of prolonged uselessness.

    It takes determination to reflect such light, to send it sparkling outwards, trusting that it will illuminate new possibilities.

    I’m starting to see more and more things that I could potentially do…

    Dreaming about the future helps the process of building a solid launchpad in the now. A while back, I set three goals and have spent the time since then chipping away at them. My physical strength is gradually improving as I go for walks, move around regularly and rest enough in between to keep my pain levels low.

    I’ve been on a few solo trips to the grocery store, planned meals myself and cooked some exciting dishes. I’ve eaten a lot more vegetables and a lot less filler. I’ve baked delicious treats that don’t throw my digestion off course and this one time, I even baked a cake just because I felt like it. It was more exciting than it sounds…

    I once had to stop a friend showing me pictures of pretty cakes because I just couldn’t wrap my head around the idea that some people have enough energy/functionality to be able to cook for fun and not just necessity. It hurt, to see fun food when I was struggling to simply have meal time food available.

    Spiced Orange & Almond cake recipe from Paleo Sweets Cookbook, Vanilla Frosting recipe from Against All Grain cookbook.

    Spiced Orange & Almond cake recipe from Paleo Sweets Cookbook, Vanilla Frosting recipe from Against All Grain cookbook.



    I have been reading every day, exploring blogs and news and tucking myself in with a novel at night. I’ve been trying to note down blog ideas or general life realisations as they happen, finally accepting that my brain won’t just hold onto them for later, no matter how genius or nonsensical they are. I’m yet to achieve some sense of writing every day, but I see that achievement unlocking, not too much further down the path ahead.

    I’m starting to see the pay off for what I have already done.

    I was able to launch. Off the launchpad. The metaphorical one that I mentioned earlier. It’s constructed of hard work and dedication to health. Having built up enough strength to launch, I was able to say yes when a spontaneous opportunity for adventure arose.

    On Friday, I sailed across Port Phillip Bay with my dad in his tandem peddle powered kayak sailboat thing. It was awesome! The sail means that there’s not all that much peddling to do and each peddle counts for quite a bit thanks to the size of the flippers underneath the boat. It was fun to relax in the sun, soak in the ocean breezes and splash through waves when we headed into the wind.

    Melbourne on the horizon.

    Melbourne on the horizon.



    We were out on the water for most of the day. Afterward, I promptly conked out for over twelve hours, bumbled through some of Saturday afternoon, conked out for another twelve hours and crashed out on the couch for what remained of Sunday. I’m still feeling the tiredness in my limbs today, but I wouldn’t expect anything less.

    I do have CRPS after all. It doesn’t give days off, but it does back down a bit when I’m lucky enough to have my treatment and physical strength ducks all lined up in a row.

    A chance to expend energy and then be exhausted, rather than flaring like crazy, is exactly what I have been working for.

    My goals for strength, health and creativity aren’t finite. I will keep on working at them as long as my body allows it and then some. The stronger I am, the more I am able to control the pain of CRPS and the more that I feel like a functioning, useful person.

    I’m so grateful for the lower pain levels that the ketamine infusion have brought, it’s worth working hard in order to keep them down as long as possible.

    I will let the light in and then sparkle it out. I will follow where it leads.

    Love & Progress,
    Caf

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