CRPS and the Springtime Blues

Oct 2, 2014 by

Dear Audy,

Sometimes, I get so wrapped up in coping with life that it takes me a while to realise that I’ve been neglecting some pretty important parts of living.

I’ve forgotten to be interesting, I’ve forgotten to be interested.

I let the daily struggles get in the way of inspiration. I let boring seep into my life again. I even read all of An Abundance of Katherines because I’d accepted that stories are just boring sometimes. And, you guys, it was so boring. Nobody gets things wrong like Kindle recommendation bot.

I’ve had a lot to deal with, sure, but I can always improve how I cope with stress. I don’t want to sit by and watch my mind turn stale.

Backyard chillin' with buddies is a wonderful antidepressant.

Backyard chillin’ with buddies is a wonderful antidepressant.



The physical side of managing CRPS is most intense for me in Spring. It’s the most difficult of the four difficult season changes that happen every year. There is just too much rainshine (humid, cloudy days that switch from rainy to sunny to glarey and back, all usually within the hour because I live in Melbourne) and rainshine hurts.

The ketamine/lignocaine infusion that I had at the beginning of the month has been helping with a lot of symptoms, however drugs can’t fight the sky any more than I can.

Spring pain involves aching on waking. Such severe, burny aching. This pain isn’t region specific in my body. It’s all the joints, every bone, every muscle. It hurts a lot. Unlike a burning CRPS limb, my generalised pain symptoms will respond to painkillers, however I only like to take them sparingly because that pain relief costs too much of my mental clarity.

Mornings are tough, I have to wake up, acknowledge that pain, accept that pain, refuse to get upset and then go about my business of trying to bring the pain level down. I generally do feel a bit better post breakfast (bacon and eggs every damn day), but getting through that routine can take until early afternoon. That’s half a day, every day, that I spend just dealing with symptoms and keeping my head on straight.

What I can get done with the rest of the day depends on the weather. Somedays, the weather clears and I can move about, go for a walk or ride my exercise bike. Somedays, I can sit outside in the sun and stock up on vitamin D. Somedays, I can’t quite stay upright without the dizzies kicking in and am confined to bed or the couch. All of the days are smothered in brain fog right now, so if I’m going through any of those motions, I’m doing it without much more thought power than I’d use to explore a dream.

I think that’s the crux of my uninspired problem, really. It’s hard to feel inspired when I can’t think.

The elbow trouble that I mentioned in my last post was eased by a visit to the osteopath. Apparently, the joint was “locked up”, most likely from holding the iPad too long to read during my infusion, that’s the only stress that I can remember putting on that joint in the manner that could have caused the injury. The pain is eased, but not gone. I’m still dealing with a lot of weakness and have to be very careful not to lean on the arm, keep it in the same position for too long or pick up anything heavier than a glass of water (even that takes two hands if it’s a big glass or the end of the day).

I’ve spent a lot of time feeling like I was going backwards lately, but I guess that considering the brain fog and added weather pain, I’m still going forward. I just have to move forward at a slower pace this time of year.

I’ve achieved some things in the past topsy turvy month that I’m proud of. I haven’t stopped exercising, despite the extra pain. I’ve had to have more rest days between workouts, but I’ve been maintaining the muscle strength that I worked so hard for all Winter. I’ve added more jogging into my walks. I finally got to try Zombies, Run! – an app that pretends you are jogging through the zombie apocalypse. Years ago, I heard about it and thought it sounded like fun, but then got very sad that I’d never know because I couldn’t run. Suck it, past Caf, you were wrong and I’m going to run over all of your assumptions. Literally.

Oh gosh. Oh, the sun has just come blaring out from behind the clouds and damn, it hurts. Enough writing and realising for today. Must rest now.

Love & Springtime Blues,
Caf

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    CRPS Symptom Limbo and a Sickbug

    Sep 15, 2014 by

    Dear Audy,

    It’s been my shittiest week in a long time.

    Last weekend, I went into hospital for a single day ketamine and lignocaine infusion. The procedure went fine, just a regular day reading Walking Dead comics while drugs dripped into my belly fat. The pain didn’t drop during the actual infusion as much as it has in the past, but it still dropped.

    This was the second time I’ve had lignocaine with ketamine. My experience both times has been that it reduces the side effects of the ketamine, meaning I am less brain fuzzy and nauseous, which is always nice. It’s hard to speak to the actual pain relieving benefits because it’s really hard to tell what my body is doing at all right now.

    I came home on Sunday night, feeling pretty fine, dozed through most of Moody-Weather-Monday, felt better Tuesday morning and then BAM! Crash. Wednesday. I got sick. Sickbug type sick. Evil virus from Hell type sick. I’m still sick, this sniffly sucker seems determined to stick around.

    Sickbugs on top of chronic illness are dreadful. My body throbbed and ached, swelled and sweated, creaked and groaned. Pain levels shot up, demanding painkillers (which don’t kill anything but the edge) and constant lying down. My throat burned, my snot tap dripped and my chest coughed. I drank water and relaxed as much as I could, there’s not much else that can be done for sickbugs that aren’t infections.

    I wondered, was I in so much pain just because of the sickbug? Was it the stormy, fluctuating winds of Spring? Did the infusion just not help? Was there any point asking questions amongst so many variables? Likely, my pain had a cocktail of causes.

    I’m really quite used to uncertainty, to proceeding without answers, to accepting without explanation. Really quite accustomed to it, indeed. So, I guess, Life just decided to raise the bar a little bit higher to find out if I can still hurdle it.

    I’ve had some strange sensations in my left arm. I’m not sure how often, but enough for me to notice the repetition. It felt like suddenly being corked in my arm, a few centimetres above the elbow, towards the back of my arm. The sensation would throb a bit, burn a bit, crush a bit and then fade. Until last night.

    Last night, the kind-of-corked feeling pain reached through my elbow and grabbed ahold of my funny bone. Sudden agony. Very quickly, it felt like my whole arm was a funny bone that had just been belted into a door frame. Not funny at all, just incredibly painful and a little distressing.

    I was just chilling in my recliner when this happened, there was no trigger that I’m aware of, just pain. Sudden, bone crushing pain. Yep, really. It felt like the bones in my arm and hand were being squeezed to death, boa constrictor style.

    Wait, ARE there invisible snakes? Because I feel like that would explain a lot of the world’s problems.

    I tried moving my arm, I tried resting it in different positions, I tried rubbing the shoulder, stretching, showering (god damn OW that was). I smooshed my face into my dogs’ fluffy little heads. I even cried a bit. The weirdo, neo-CRPS-flare wouldn’t settle.

    It still hasn’t. I’m typing this with one hand while the other arm throbs beside me like an evil deadweight that can attack even whilst it’s being dead and weighty.

    It looks like it's been bashed up, but it has not. Total faker.

    It looks like it’s been bashed up, but it has not. Total faker.



    It takes a lot of concentration to keep moving my left fingers because I feel the hand wanting to stiffen. It feels like the whole arm wants to turn to stone and I could just about believe that was happening going by the sensations that I’m perceiving. It’s very weak, I can’t even hold a drink in my left hand. My elbow feels very much like it was recently fractured, which is a feeling that I’m surprised to find out I remember from childhood.

    Aside from the left arm, I’m getting a lot of those kind-of-corked, sharp, jabby pains in many of my other joints. I’m concerned that typing this will set off further pain in my already compensating right arm, but I gotta deal with this crap somehow.

    It’s a lot, ya know? Especially right after an infusion… I was really looking forward to pain relief and Life served me up an extra helping of agony and confusion instead.

    I’ll be OK. I’ll cope and keep going. But, for now, I’m a bit sad and disappointed, feelings I’ve just gotta feel and release.

    If only I could release this damned pain along with them.

    I will wait. I will manage the pain and I will wait. Nothing lasts forever.

    Love & Exhausted Sighs,
    Caf

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    An Amazing Consultation with a Pain Specialist

    Sep 1, 2014 by

    Dear Audy,

    I have been seeing my current pain specialist for about a year. During this time, I’ve made a lot of progress towards a stronger body thanks to lowering the pain using ketamine infusions and working my butt off every day. Everything is going great, which is why it was strange to wake up early today feeling trepidation about attending an appointment that I’d been looking forward to all week.

    That anxious feeling was just the ugly face of history threatening to repeat. In my experience, pain specialists often get a bit antsy around the one year mark. Some of them decide that 12 months is long enough for me to be cured of CRPS already and then decide not to treat me anymore. I know, right? It’s hard to be a doctor and not be able to fix incurable diseases by magic, it’s really hard to exercise compassion when reality is reminding you that your medical degree does not make you a god.

    Please, everybody, let’s take a moment to appreciate the overpaid medical specialists who were studying so hard that they forgot to develop emotional maturity. Those poor dudes.

    Now, let’s talk about what happens when a specialist is supportive instead of distortive… (What do you mean that isn’t a word? It fits into this sentence perfectly!)

    It was so freaking amazing to have a totally positive consultation this morning! It went something like this:

    Pain Specialist: You look amazing! Have you lost weight?

    Me: Yeah, I can move now! My legs have muscles in them!

    Pain Specialist: Yay! (might be paraphrasing) Are you still studying?

    Me: Nah, my hands broke down before I could finish the course. They started flaring badly about a month after the last infusion because I did some weeding and it was too much for my forearms to handle, then I learnt that I need to be stretching my forearms because they’ve forgotten how to be flexible, so I’ve been doing that since then.

    Pain Specialist: *nods* You’ll probably find that building up that strength will take time, much like it has for your legs.

    Me: (WOAH DID YOU JUST NOT YELL AT ME FOR NOT GETTING BETTER IN A STRAIGHT LINE?!) That’s what I figured! They’ll catch up if I keep working at it.

    Pain Specialist: You’re doing really well. A lot of patients want medication to be a straight out cure, however relieving the pain doesn’t help much in the long term without a lot of determination to improve strength and lifestyle.

    Me: (WHY ARE YOU MAKING SENSE? ISN’T THIS THE PART WHERE I GET KICKED OUT AND THEN GO HOME AND CRY?) Oh, and I’ve stopped taking all my meds. I tapered them off but they’re all stopped now.

    Pain Specialist: *nods* *makes note* *smiles*

    Me: (AM I DREAMING? WHERE IS THE LECTURE BECAUSE I MADE AN AUTONOMOUS DECISION ABOUT MY HEALTHCARE?)

    Pain Specialist: OK, so we’ll do another day? (of ketamine)

    Me: Yes please! ASAP please!

    Pain Specialist: Sunday?

    Me: I’ll be here!

    And… Done. Basically. I mean, we chatted a little more than that but you get the gist.

    BTW, that's Momo. He's new around here.

    BTW, that’s Momo. He’s new around here.



    The things that made this appointment fabulous from a patient perspective were as follows:

    The doctor listened when I explained about my hands playing up and acknowledged my efforts to cope with that hiccup. A lot of doctors seem to forget to pay attention to their patients’ answers because they’re too busy thinking about what the patient “should” be saying.

    The doctor did not have impossible expectations of me. The assholiest Melbourne specialist that I’ve seen once berated me about not having a job or volunteering even though at the time I could hardly walk or feed myself. As you can imagine, that was super helpful and made me feel absolutely chipper.

    The doctor did not blame me for my condition. Sometimes chronic conditions get worse and sometimes they get better and it’s usually not the patient’s fault. We don’t live in a completely controllable environment, I know. Shock! Horror! Can somebody please tell Centrelink?

    And so… I shall be off to hospital for infusing this weekend and I’m super excited! Seasonal flaring has made the last couple of weeks difficult and it will be wonderful to get some relief from that. Hopefully, everything will keep running smoothly and after the infusion I’ll be able to build up more functionality.

    I just can’t tell you how wonderful it is to be able to look forward and actually see how things could be better and then look to my side and see there’s a doctor willing to help me on the journey. Amazing. I will never accept bad doctoring again, I mean hopefully I won’t encounter it, but if I do, that bad doctor will be getting a calmly articulated piece of my mind rather than a tissue full of my tears.

    Love & Smiley Hugs,
    Caf

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    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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