Tag Archives: Pain Management

Persisting Through the Humdrum of Daily CRPS Management

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

    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

    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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  • Finding Motivation in Spite of CRPS Pain & Painbrain

    Dear Audy,

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

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

    Shut up, weather!

    Shut up, weather!



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

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

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

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

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

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

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

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

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

    Confused? Yes. Living with CRPS is very confusing.

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

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

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

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

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

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

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

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

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

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

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

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


    Love & Cheerleader Kicks,
    Caf

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  • How Weather Influences My CRPS Symptoms

    Dear Audy,

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

    The evil sky.

    The evil sky.



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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

    And I’m proud of me for that.

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


    Love & Gritted teeth,
    Caf

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  • Fighting My Way Forward & Sailing Away

    Dear Audy,

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

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

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

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

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

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

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

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

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



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

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

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

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

    Melbourne on the horizon.

    Melbourne on the horizon.



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

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

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

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

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

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

    Love & Progress,
    Caf

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  • Three’s a Charm

    Dear Audy,

    I am starting to fit a few productive things into my days. I’m still dealing with some leftover fatigue from the ketamine infusion, but I’m doing my best to fight through the fog enough to kickstart some body strengthening. Yesterday, I ate three times. Yep, breakfast, lunch and dinner. All healthy stuff. It was pretty spectacular. Don’t worry about sending congratulations, I know how impressed you are right now.

    My knee is starting to function like a practical joint again. I can use it to do things like stand on my legs for a little while and walk around the house. I have to stretch it a lot and try not to keep it bent for too long, which is rather tiresome, but I am enjoying the standing and so I will continue sucking up to my knee by playing physiotherapy princess.

    I will do my stretches and exercises, even though they are very boring.

    It’s a struggle to muster up motivation at the moment. I feel like I’m lagging behind life.

    I didn’t expect to feel this way after the infusion. I knew there would be a bit of recovery time, but that time has been dragging on. I have lived with untreated CRPS for so long that now that a treatment finally helps, all I want to do is slip on my bright pink runners and sprint off into new adventures.

    It's been too long since I've been able to wander through trees!

    It’s been too long since I’ve been able to wander through trees!



    Ketamine is not a cure, however. It’s not magic. It’s a tool and like most tools, it doesn’t do the work by itself. There’s a lot of work involved when attempting to rehabilitate a rewired body. A lot of work that needs to be paced out over an indeterminable amount of time.

    I will do my stretches and exercises, even though they are very boring.

    My pain levels are still lower by my standards, but pretty high by regular standards. I’ve been weather flaring and pain spiking and that sort of business is hard to predict. I need to keep my goals simple until I’ve regained more strength.

    Three is a nice, simple number. I only have three goals:

    1. Improve physical strength through pain management and exercise.

    2. Improve diet by cooking regularly and returning to grocery shopping when strong enough.

    3. Read and write every day that I physically can in order to trick my brain back into some sort of creative and productive mode (it’s gotten way too comfortable doing nothing).


    That’s it. Hopefully 1+2+3= less pain and more activity. That’s my whole life plan right now.

    I will do my stretches and exercises, even though they are very boring.

    Love & The Daily Grind,
    Caf

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  • After the Ketamine

    Dear Audy,

    I hope this message reaches you. I seem to have gotten stuck in a post ketamine holding pattern and I’m no longer sure whether or not the world is out there, whether people will still understand English or that anyone even remembers what a blog is…

    It’s possible that some frustration and boredom have blurred together, rendering me temporarily dramatic. Don’t worry, everything sparkles here in Crazytown. Mwahaha!

    Infusion Begins


    The infusion was pretty super dooper (for those that haven’t been playing along on social media, I spent last week hooked up to bags of ketamine that dripped into me through holes in my belly for five days). My pain dropped more quickly than during the previous infusion and I enjoyed some delightful, glorious relief. I had a little flare up on the second to last day and so had a pain relief boost in the form of a bag of lignocaine that also dripped into me through belly holes.

    I came home at about dinner time last Thursday and promptly passed out in the sweet, sweet comfort of my own bed.

    Which is basically where I have been since then. I’m so very tired. I don’t feel like I snoozed in a hospital for five days, I feel like I went on a drug fuelled party rampage. I feel like I was awake the whole time, which is almost the exact opposite of what really happened. It’s no surprise, what goes up must come down and, also, the same week long episode of fatigue struck me after my last infusion. I mean, I’d have to have a pretty short memory to be surprised right now…

    Except about this injured knee that I have. This is new. Well, new-ish. I (allegedly) injured it a few weeks ago by doing absolutely nothing. I’m serious, I sat wrong on the couch or something. Who knew that couches had a right?! It’s political correctness gone insane. Or something.

    Anyway… I had the osteopath release the pressure so that my knee would stop feeling like it was going to explode and now it is really sore and soon it will be better again. Knees, ugh… Am I right?! Fickle joints they are, flimsy and fickle.

    In the meantime, I’m waiting for my brain to wake back up, which isn’t going to happen today, which I can prove because I’ve had three coffees and it hasn’t happened and it’s after 4pm and that’s just basic science.

    As for how the ketamine has affected me? CRPS pain is still low. It’s still present and bouncing around as the weather changes and sorer in some moments than others, but overall the peaks are lower than pre-infusion. If things keep trucking along like they did after the last time, the pain levels will stay low and maybe even drop further once I get over this fatigue.

    Aside from a few strolls around the block, I haven’t been up for much movement yet. My brain and body wake up a little bit more each day and as I regain my powers, I will be using them to focus on physical therapy. The ketamine gives me a little break from astronomical pain levels and the best thing that I can do with that break is strengthen my body to better cope with future challenges.

    Love & Recovery Snoozes,
    Caf

    P.S. In very sad other news, I had to say goodbye to my dear little Lucy-beagle a fortnight ago. It comforts me to know that she’s no longer in pain, but God damn do I miss that sweet little face with the floppy, floppy ears. I keep expecting to see her where she always used to sit… The missing, it hurts my heart.

    20140118 Lucy


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  • The Confusing Art of Communicating a Life in Chronic Pain

    Dear Audy,

    The physical pain of CRPS has been highly restricting me for several weeks now. Well, it’s been doing that for over seven years, but what I mean to describe is a higher level of incapacitation than I was dealing with before the slump began. Mentally, I’m coping really well, which leaves me existing in a strange mind/body duality that I’m trying to figure out how to communicate.

    This is a world of sharing, for those who choose to participate in the whole social media thing.

    Me, Instagramming a day of forced lying down.

    Me, Instagramming a day of forced lying down.



    Sometimes, I wonder how healthy people perceive my updates. A lot of people online will exploit any sort of tiny complaint for sympathy and a million x’s and o’s. If you’ve never seen an “I have a cold” post followed by a bunch of “Oh, that’s TERRIBLE” comments, then you haven’t been on social media for very long. Whilst I don’t really care about whether or not anybody else wants to fish for sympathy for whatever reason, I do worry that people who follow my posts might think that I’m doing the same.

    How do I share pain without misery? How do I share isolation without loneliness? How do I share incapacitation without frustration? How do I share a life of chronic pain without being a chronic complainer?

    “Complaining and whining can be distinguished by the nature of the dissatisfaction and by our motivation for expressing it. Complaining involves voicing fair and legitimate dissatisfactions with the goal of attaining a resolution or remedy. When we voice legitimate dissatisfactions but do so without the goal of attaining a resolution we are merely venting. And when the dissatisfactions we voice are trivial or inconsequential and not worthy of special attention, we are whining.” – Guy Winch, Ph.D, The Difference between Complaining and Whining, The Squeaky Wheel


    For me, an important difference between complaining, venting and whining is the way it makes me feel afterwards. Lately, I’ve been experiencing some extra pain and discomfort in my left hip, knee and ankle. It’s an elevated level of pain to the usual drone of CRPS and a more muscular-skeletal feeling pain than burning nerves.

    Being pained and incapacitated is a legitimate dissatisfaction, so whining about the actual problem is not exactly possible in accordance to the definition above. What I am able to do, however, is whine about how this pain effects more trivial parts of my day. You know, “I can’t go for a waaallllk”, “I can’t bake cooooookies”, “I don’t want to watch the criiiccckkett” (specific for those who don’t like cricket, nor do they love it, but they totally get that reference because they fell for sports fans).

    How does whining make me feel? Well, mostly amused because these days I’m joking, but I haven’t always been this clearheaded. Were I feeling weak, I might just fool myself into believing that the things I am whining about actually matter and then begin to feel genuinely upset about them. In that instance, the main accomplishment of my whining would be to add a smaller, more immediate problem on top of what I’m already dealing with. Creating problems from nothing is a pretty silly thing to do, but I dare you to claim that you’ve never done it…

    Whining will only make the problem bigger, but I can vent about it. Sometimes, venting can help you to release something that’s been boiling inside, however, let venters beware that there can be downsides. If you’ve been reading this blog for a while, you’ll know that I can spend a lot of time venting. Years, even.

    How does venting make me feel? Different now, than earlier. It used to feel good to just blurt out anything and everything that was wrong. Venting about the same, unrelenting problem for years can stop helping and start hurting my chances of moving on and out of that emotional loop. There are only so many times that I can feel the same feelings, release them, generate them again and release them before it starts to seem like they are just too domesticated to be returned to the wild.

    They’re my feelings, I have to own them and deal with them instead of yelling them at anyone who’ll listen. Dealing with them involves a lot of introspective work on changing my beliefs and perspectives, it’s a lot harder than venting, but I am feeling more calm and in control the longer I work at it.

    Venting can be super helpful when you have a lot of anger to get out. Venting can be ridiculously satisfying in the short term. Eventually, feeling angry can become grating and tiresome and so learning to understand and hush the sensation before it builds up to explosion point becomes a more useful goal.

    I can definitely complain about my pain. Complaining doesn’t have to be a negative thing. In the instance that I couldn’t figure out why I’m in extra pain, I’d show up at the GP, get complaining and get some sort of action plan happening. As it is, I know that this discomfort is being perpetrated by a little twist of the pelvis and that the most likely reason for this is muscles tightening when they really don’t need to be. I’ll be going to complain to my osteopath about this later in the week and then he will do some rubbing and adjusting and there’s an excellent chance that I’ll end up feeling better.

    Complaining isn’t weak or a character defining thing, it’s basically just asking for help when you need it.

    The ugly truth is that I live with a highly debilitating case of Complex Regional Pain Syndrome. The confusing part about sharing my life is that I tend to feel better if I’m not constantly acknowledging that this is an “ugly” truth. When it’s just the truth, I can get to dealing with what I can still deal with, I don’t have to be held back by feeling horrified by my situation.

    It’s easy to perceive a life of pain and illness as pretty shitty, that is, unless you’re the one living it. It’s way harder to perceive you’re own life as pretty shitty, those sorts of feelings are truly horrible and lead to things like frightening suicide statistics. In order to play the hand I was dealt, I have to keep finding ways to perceive a life of pain and illness as not really that shitty and perhaps even awesome sometimes.

    If I just keep working on communicating this point, maybe my strange mind/body duality won’t seem so strange at all. I mean, you read this whole post, you totally get it now, right?

    Love & Pondering,
    Caf

    P.S. I am attempting to utilise the Facebook page for this blog more often to share links that you might find interesting and personal updates related to coping with chronic pain. This helps to stop me from spamming everyone I have ever met from my personal account. Click on over to Like Rellacafa because you want those posts, or just because my grubby dogs think that you should.

    YOU CAN'T IGNORE ME, I'M FLUFFY.

    YOU CAN’T IGNORE ME, I’M FLUFFY.



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  • When the Ketamine Worked

    Dear Audy,

    Do you ever get stuck on trying to do something and then you can’t do anything else until it’s done, but then it never gets done and you realise that you never really had to do it in the first place?

    No? Just me then…

    I’ve been meaning to tell you about my second ketamine infusion by recording a video blog. I haven’t quite had the energy over the holidays and so anything else that bumbled across my mind that seemed worth blogging about got pushed aside into the “after the vlog” pile.

    The day before yesterday was finally the day. I was feeling bloody awful as I’ve spent this past week muddling through a heap of seasonal flaring. I thought I’d be productive in spite of the pain and so I painted on a less blotchy face and sat down in front of the laptop.

    Once there, I tried to figure out how to talk like a regular, comprehendible person. It took several takes before I got my vlogging mojo back and started to make sense. I really don’t spend a lot of time conversing these days. It can be hard to remember things like “joining thoughts together” and “stop talking when it’s not adding anything”. Eventually, I got it done.

    I mean, I think I did. I couldn’t manage to watch all the footage play back at me. This isn’t one of those insecure, “my own voice on tape” things, it was just because the whole damn lot of it recorded with the audio out of sync. I have no idea why. So, naturally, I gave up and let the delete button have its way.

    I suspect that there is no why. I think this is just the fates mocking me for my silly little “nothing happens until after this vlog” stunt. If I tried to record something now, it would probably work just fine.

    But I am done with that. There will be no vlog! Haha! Take that, mind block. Look, I’m just going to straight out tell you what happened in, like, a few paragraphs or something. Read on, sucker!

    In my last post (before the mind block), I mentioned that I started seeing a new pain specialist who was willing to try another ketamine infusion with me. I went in for a five day infusion in October last year.

    Getting infused. Like a boss.

    Getting infused. Like a boss.



    The whole experience was a completely different one to that horrible infusion that I endured a few years ago. It was only half as long and the drug was administered much more slowly than the first time around. I didn’t have any crazy hallucinations or nights of ridiculous nausea to get through. I was mostly fine, other than feeling a bit out of it because of being on drugs and all.

    My pain levels dropped slowly but steadily. By the third day, I was a few points down on the pain scale. I then had a second drug added, this one was lignocaine and went for 12 hours, in a separate infusion point to the ketamine. While both drugs were running, the pain dropped to the lowest I have felt in years. It was both utterly amazing because of the relief, but also incredibly shocking because I could clearly realise just how much pain I deal with on a daily basis. It’s….a lot.

    Double infusion.

    Double infusion.



    Following the infusion, I didn’t have any of the almost immediate, painful reactions that I had the first time around. I remained really calm. My pain levels were low, even though stormy weather had my hands and feet swelling and sweating like they do in a full flare. That was one of the strangest things, to feel the symptoms of a flare without the all consuming pain that usually overpowers my perception of them.

    I spent about a week resting and recovering. My pain levels fluctuated a lot during that time and it was hard to tell if the ketamine was going to provide any lasting relief.

    Soon enough, I was able to start moving around and building strength again. I was pleased to discover that my general level of pain was about 2 points lighter than before the infusion. This might not sound like much, however, for me it was the difference between never being able to do anything and being able to walk/cook/drive in small but useful amounts.

    I put all of my pain rehabilitation training into effect and paced out my activities throughout the days, slowly attempting to improve and increase what I was doing. As well as a slightly lower pain level, I found that I needed less recovery after activities than before the infusion. Instead of going for a walk and then being stuffed for a week, I could go for a walk, rest the next day and then go for another the day after that.

    I’ve continued working each day and doing what I can to improve my strength. My abilities started to decline a little around NYE and I have been dealing with increased flaring since then. I think that this has little to do with how I am managing and a lot to do with the Melbourne weather being unable to decide whether it’s going to do Summer or not.

    Even though I am back in a bit of a flaring rut, I am still feeling positive. My mood has been surprisingly stable since the infusion. I found a lot of clarity in feeling the pain melt away whilst on ketamine. Living with a high level of pain all the time can get confusing and sometimes, even I start to wonder if it’s really as bad as it feels. Having the pain relieved for a bit and then returned gave me a really clear perception of just how much I am usually dealing with. All of a sudden, I was able to be a little bit easier on myself for not having achieved anything in the past few years other than survival.

    It’s only about three weeks until I will go in for another 5 day infusion. Knowing that there is relief up ahead is making coping with the recent bout of flares a lot easier. There is the possibility that the next infusion will have a cumulative effect on the first and bring me even more relief, which is what I’m hoping for. However, even if the pain relief is not lasting, just knowing that I can go and have a little break from the battle I fight 24/7 creates a kind of mental relief that is well worth going to hospital for.

    And so, there you have it. Ketamine infusion the second: described. Mind block: demolished. Achievement unlocked!

    I can officially blog about whatever I want, whenever my hands will let me, PHEW!

    Love & The Art of Observing Your Own Crazy,
    Caf

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