The Very First #CRPSOrangeDay

Nov 5, 2014 by

Dear Audy,

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

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

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

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

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

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

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

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

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

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

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

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

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

Love & Lots of Orange,

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    Noticing the Disappointment Cycle

    Oct 31, 2014 by

    Dear Audy,

    At the start of this week, I started writing to figure out where I was at with the whole coping with life thing and discovered that I’d been tripping myself up by expecting too much from my better days (The Problem is in the Positivity). I’ve been thinking about this realisation all week and wondering how to stay inspired and motivated without being so attached to the outcome of my plans that I’m continuously traveling through a disappointment cycle – which I imagine would look like one of those spinning circle illusions.

    It seems to be moving, or maybe I am moving and I’m going towards the centre and maybe there is some sort of prize in the centre and I’m working hard and getting close to it and then my eyes twitch and the circles stop spinning and, once again, I’m not going anywhere. (click for image source)

    It seems to be moving, or maybe I am moving and I’m going towards the centre and maybe there is some sort of prize in the centre and I’m working hard and getting close to it and then my eyes twitch and the circles stop spinning and, once again, I’m not going anywhere.
    (click for image source)

    I refuse to stay trapped in a disappointment cycle. It’s an illusion, the circles were never spinning. Feeling down is on me, all of those emotions are created by my reactions to things in my life. They might be events, they might be thoughts, they might be accidents, they might even be actions that are entirely in the control of and carried out by others. It doesn’t matter, none of those things can make me feel feelings.

    Emotions are all reactions, it can just take some work to figure out what I’m reacting to and why I’m generating that particular response.

    The overwhelming feeling that has been bothering me lately felt like losing to the limits. At first, it felt like just another aspect of CRPS, as though achieving goals was just another thing that the disease had stolen. I accepted this explanation for a while, until I began to wonder why I was accepting these unhelpful emotions when I sincerely believe that I don’t have to remain upset simply because I am sick.

    Feeling sad doesn’t make feeling sore any better, so I hack away at what is going on in my mind until I figure out the real issue that’s instigating the emotions.

    For example: If I believe that physical pain = sadness, then I will be sad all the time. I’m literally never not in physical pain (not even when I’m laughing and dancing with you) and so if I accept this equation as fact then I am doomed by my own misunderstanding of my own mind.

    Thankfully, emotional states can be examined further than simply “accept” or “reject”. I look for the whys, even when they seem ludicrous, or confronting. To be honest, it’s always confronting to challenge myself to find the belief that’s holding me hostage, call it out, decide to let it go and actively build a new belief out of the lessons that life teaches to anyone who’ll listen. I’ve had to spend a lot of time admitting to myself that I have been wrong, that I have been ignorant, that I have been carried away by assumptions, that I’ve been an asshole, that I don’t know everything, or anything, and that even the things that I think I understand might be changed by further information.

    It can be harsh. The kinds of internal beliefs that I need to challenge in order to alter my emotional reactions are parts of me, or ways of me, that have been guiding me for my whole life, forming my identity and hovering around everything I do, disguised as certainties. Challenging the beliefs that form my identity is like taking a puzzle, scattering the pieces and then trying to figure out if any of those pieces will fit into a new picture that I’ve never seen before. The puzzle pieces form the ground that I stand on. Until I can get them to fit together in a more helpful way, I’m just floating. If a core belief isn’t make me feel good, then it needs to be tweaked until I have something solid to stand back up on.

    Emotional states aren’t usually just in the here and now. I’ve been riding a roller coaster of feeling well, okay, crappy and utterly useless. The carriage was set to a high speed and I went up and down, over and under, around and around. I was dealing with emotions as they arose and neglecting to notice the overall patterns made by those fancy coaster curves.

    I’d feel well one day, get a lot done and start to plan how I could use this newfound power to get a lot done the next day and the day after that. I’d see a career start unfolding in my imagination. I’d get that feeling that whatever plan I was thinking about was something that I could do “now that I’m feeling better”. The next time that my pain shot through the roof, or fatigue floored me, I’d feel disappointment at realising that I am not actually “feeling better” enough to carry out the plans from my feeling-well-day and then I’d sink into the sadness and have to fight it off again.

    It’s a bigger cycle than a day, a bigger flowchart than event-causes-emotion and of greater importance than it might seem.

    To stop getting caught up in the disappointment cycle, I have to stop getting disappointed. Even more, I have to stop setting myself up to be disappointed. Daydreaming is fun, it can be a great way to begin a new adventure, but it is that sense of beginning that I think is causing my angst.

    When I am having a good day, I have to let it be a good day, try to enjoy it, but not assume those feelings mean anything about my future health or abilities. CRPS doesn’t simply heal, I need to remember that feeling well and being well are different things and the same goes for feeling capable.

    It’s quite daunting to be looking forward and wondering what will happen to my mind once I’ve been policing it away from overexcitement for a while. Will I stop feeling motivated? Or never feel inspired? I’ve allowed myself to emotionally invest so much in my dreams of the future for so long that my senses of feeling motivated and inspired are tied up with my plans and predictions. I need to separate them, to maintain motivation without the need for achievement and search out inspiration without the need for outcome.

    I’ve noticed my mind attempting to attach a more productive future to everything I’ve managed to do this week. I was able to cope with shopping and cooking and so I felt the urge to plan more and more complicated meals. I was able to drive about an hour to a friend’s place, go out to eat and drive an hour home and so I felt the urge to plan bigger adventures, you know, maybe I could drive two hours in the same direction and end up visiting a friend who lives even further away. I was able to handle a 5km walk and more sessions on the exercise bike than I’ve been capable of in months and so I began to think about returning to Tasmania to hike the hikes that I could have never handled on my first visit… the goals get rather specific at times.

    I’m not admonishing myself for having these thoughts, or cutting them off, or immediately attempting to replace them with other, more purposely manufactured thoughts. That’s not how changing a way of thinking works. I can’t force beliefs to change by being forceful. Instead, I just need to notice them. I just need to look and see what’s going on, honestly. The honesty part is important, some of those long-standing core beliefs refuse to go down without a fight and are fond of resorting to trickery. They hate to be seen, though, and just noticing them can cause them to vanish or morph into something new.

    I refuse to stay trapped in a disappointment cycle. I refuse to stay trapped by thoughts or emotions. I’ll keep watching and the next step will reveal itself. It always does.

    Love & Actual Positive Thinking,

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    The Problem is in the Positivity

    Oct 27, 2014 by

    Dear Audy,

    I’ve had to put a lot of extra effort into simply coping with being alive this Spring. It’s been easy to get down about that, to feel like I’m taking unwanted tangents on a journey that never promised to be linear, or falling backwards through issues that I thought I’d overcome. It’s really easy to get caught up in the daily struggles and when that happens I can forget how life with CRPS has been much, much more difficult that it is right now.

    Springtime brings brain fog and pain flares and both of those things make thinking seem like a really difficult task. It can feel like my mind can’t complete a thought. I get caught up in beginnings but don’t make it to the endings. Of my thoughts. Similarly, I can rarely even read a whole sentence without the start of it falling out the other side of my head.

    The reading thing is so annoying. I struggle to find inspiration when I can’t spend time escaping in books or learning from blogs.

    The thing about beginnings is that they are exciting things. They herald in the new and different. Beginnings are the only paths there are to change and change is a thrilling prospect when life has been feeling stale and forced.

    20141027 Gandhi Quote

    Just thinking about beginnings, though, that’s a whole other thing. When I’m having trouble seeing thoughts through, my mind likes to throw out more and more potential starting off points like some sort of stupidly helpful demon. These can get frustrating once I realise my inability to physically see through any of the pleasing plans that I’m thinking about.

    Ooh, I can type today, maybe my hands are finally strong enough to get a job…
    Next day: Hands full of lightning and fire.

    Ooh, I typed a whole blog post today, maybe I can pursue more writing opportunities…
    Next day: Hands dripping with pain and devil’s sweat.

    Ooh, I managed to drive 5mins to the supermarket today, maybe I can go on longer adventures…
    Next day: Can’t turn head or lift arms to shoulder height.

    Ooh, I chatted for a couple of hours, maybe I can get a boring telemarketing job that would at least pay me money that I earned myself…
    Next day: Jaw welded shut, can’t chat, can’t smile.

    Ooh, I read a few chapters of this novel and understood the words, maybe I can handle some at home study…
    Next day: What? Next Week: Huh? Next Month: HOW DID NOVEMBER HAPPEN?

    Sitting back now and looking at what I just wrote is rather less frustrating than the experiences themselves. Look at that positivity, eh? I’m taking the tiniest bit of function and sprinting toward the wonderful developments that it might indicate, which is kind of nice, but it seems obvious that I’m suffering from some sort of misplaced attachment.

    All you need to do to understand that attachment is a dirty word is mix up a handful of Mindfulness with some Cognitive Behavioural Therapy and throw in a dash of Buddhism (this recipe is my most effective coping concoction). I’ve done a lot of work towards detaching my emotions from my physical pain, detaching my self worth from career or the opinions of others and detaching my sense of well-being from a checklist of things that need to be achieved.

    Learning to understand the negative ways in which my mind trips me up is only half the battle. I need to be able to function well in the positive places too. Attaching too much emotion or expectation to a positive experience can lead to as much disappointment as attaching them to a negative one. I want to get better at appreciating joy and all the good experiences without attaching so much of myself that the emotions will crush me back down once the reality of life with CRPS kicks back in.

    My goal isn’t to become a robot who doesn’t feel, it’s to become a human being who isn’t ruled by emotion. It’s possible to feel excited without having an emotional attachment to an outcome that might never happen. It’s possible to feel accomplished without having an attachment to further goals that need to be achieved. It’s possible to have goals without a belief that any sort of backwards step is a detriment to everything that I am.

    Human minds like to find patterns and stick to them. Certain emotions “mean” certain things. Certain happenings “mean” certain emotions. Repeated situations “mean” repeated visits to the same emotional landscape. It’s an evolutionary thing, there’s so much to perceive in this world that we can’t know it all, so we look for patterns and without any realisation that the patterns aren’t as meaningful as they seem, we can become trapped in those perceptions and unable to see things differently.

    I want to keep examining the patterns that I fall into when good little things happen. One good day is not the start of a miraculously healed life, just as ten bad days are not definitive proof that life will always be terrible. Things don’t work like that. I need to let go of those assumptions for the future because they get in the way of me enjoying and maximising the present.

    I guess I have this underlying belief that living involves uphill momentum towards a goal and then onwards and upwards to the next goal and the one after that.

    It seems so silly when put into words. By upholding this unrealistic belief, I set myself up to waste much of my life feeling disappointed that reality isn’t the same as this expectation that I’ve built up in my head.

    Dealing with attachment issues on the positive side of things is not all that different to dealing with attachment to thoughts and beliefs that get me down. I need to look at them. I need to observe when my mind starts getting carried away by what a wonderful day might mean for my future. Once I shine a light on that below-the-surface thought garbage, it will help the excess emotion to fade away so that I can just enjoy the wonderful day, or the wonderful moment, or the small achievement that has made me feel a little bit alright about my day.

    It’s weird to go looking for a reason as to why I don’t feel as stable as I could and find that the answer is hiding behind positivity. It makes sense though, good and bad are just labels and sometimes there’s a nasty trigger tucked away with the good stuff. Good now doesn’t mean good later. Just ask any addict.

    Love & Learning,

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    Setbacks or Life Pauses: Choosing My Perspective

    Oct 20, 2014 by

    Dear Audy,

    Today is one of those days that feels like the beginning of a storybook. The sky is sunny and clear. The air is perfectly cool and refreshing. I woke without feeling like my body was going to swell to the point of bursting or melt into a puddle under the crushing weights of humidity and gravity.

    It was a really nice change.

    20141020 Spring garden

    I’ve been struggling a lot over the last couple of months in ways that have been difficult to put into words. I’ve felt sore, tired and beaten down. I’ve kept going, kept pushing and kept wondering why every part of life has to be so hard, whilst knowing that perceiving tasks as difficult is a mindset that I can always change.

    I tinker away at my thoughts and sometimes they click into place. It can take seconds, minutes, months, or years, but if I keep noticing what my mind is doing and challenging it to do something a little bit differently, then eventually things change. I change.

    There have been external factors that I can’t control and reactionary angst that I work to get better at controlling.

    I was hoping to start some new and exciting things after having successfully gotten stronger all Winter, however some periods of extra illness have set me back a little. Setbacks are tough. I know you understand that, Audy, whether you live with an unpredictable illness or not. It’s never fun to get to the castle, die at the spikes of Bowser and have to start the level over.

    Losing my footing in this latest level was confusing. It was unexpected to go back to the start, I was so focused on continuing forward that a setback (or a few) felt like an affront, an attack on me and everything that I believe in. Ridiculous, really, a setback is a just a setback, it’s not the universe having a personal dig at me. Recognising this can be a surprise because things don’t always seem so simple when you’re in the midst of them.

    When life gets a little rougher than usual, I try to keep focusing on the little things that keep me alive and calm. Little things like eating well, exercising and pain management. I focus on pacing and try to be sure not to spend all my energy taking care of one task at the expense of everything else. It gets boring, and then I focus on reframing what I consider boring, why I consider it boring and what I can do to stop this perception from interfering with the boring tasks that I need to keep doing in order to have the strength to cope.

    I’ve felt lost during this setback because I’ve missed having new things to focus on. A few months of slowly improving in strength and coping skills had me feeling ready to take on something new and productive, like perhaps some sort of gainful employment. Being set back meant it became impossible to realistically consider doing anything more than coping with CRPS and, understandably, that bummed me out a bit.

    I’m still struggling with the Spring weather, however it’s day’s like today that remind me seasons always change and that I’m not losing anything just because I can’t strive to achieve for a while. Not going forwards doesn’t equate to going backwards. Maybe the problem with setbacks is the “back” part. Maybe I should think of them as simple pauses.

    Maybe the weeks and months when I feel like I’m weakening because the disease is strengthening aren’t setbacks at all. Maybe they’re just little life pauses. And maybe life pauses are OK.

    And with that realisation, it’s definitely time to rest my hands.

    Love & Little Steps,

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    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,

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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,

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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*


    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,

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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,

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