Tag Archives: Pain Flare

When Things Went Left

It’s strange to realise that you need to take a break from social media, especially when it’s your only little window to the outside world. I’ve been dark for a couple of months, eons in internet time. I needed to take a break. I needed the quiet. I needed things to change. I needed to change. I just needed to…not…for a while.

I couldn’t be here anymore. I couldn’t figure out how to relate to other people. I couldn’t remember how to talk to them, how to listen to them, how to understand anything. Yet, I was trapped in the cycle of being a social media participant, a blogger and a person wanting to spread awareness about life with CRPS.

When I tried to express myself, I felt like I was a person trapped inside a bear, roaring my truth but only emitting “RARARARGARGARARAAAAAAH”…to which the response was a smile, a pat on the head and a “there, there, you silly, noisy bear”.

CRPS gets worse at times and it usually doesn’t make any sense at all. The only thing that I can think of as an appropriate label for what began a few months ago is a progression. More like when CRPS spread from one region to another in my body than a flare up of severe symptoms. I find it so hard to describe how it felt, but now that some time has passed and I’ve had to refer to the situation a few times, I find myself repeating that it “went left”.

This might be hard to understand in light of the fact that I already had symptoms throughout my left side and before it “went left”, my left hand regularly displayed the worst symptoms of all the regions in my body. So, what do I mean by saying it went left? It already was left, right? Yeah, kinda…we’re through the looking glass here guys, don’t go looking for logic.

Unfortunately the “S” in CRPS stands for “Syndrome”, not “Sense”. Syndrome is a word that we use to try to explain a group of symptoms. The problem with groups of symptoms related to a malfunctioning nervous system is that they are like your arsehole neighbours. They will invite new, noisy friends over whenever they damn well please. Syndromes don’t have to make sense. Once they start getting all explainable with things like clear pathologies, we call them diseases. Syndromes feel oppressed by diseases, they don’t want to grow up and be boring like cancer. They are the angst-ridden teenagers of diseases whining: “Don’t try to tell me who I am, man. I won’t be defined by your rules, I do what I want!”



I never expected my sensation of having a body could be split down the middle. It was like being struck by lightning, but just on one side. Slowly, the extreme pain on the left began to creep into over into the right limbs, yet the sensation of having two very distinct halves of my body remained. It got bad, really bad. Struggled to lift food into my mouth, bad. Struggled to go to the toilet alone, bad. Struggled to even see the point in continuing to fight, bad.

Doctors will have patients rate their pain out of 10 so that they can get some sort of idea of what they’re dealing with. A 10 is supposed to be the worst pain that you can imagine. I’ve refused to rate my pain 10/10 for a long time because it always seemed like once I did that, the pain would try to beat its high score. I’d have pain that involved struggling to breathe, tears streaming in the absence of consciously crying, my face pulled back into a grimace so extreme that I felt like a cartoon and a certainty that any second I’d lose consciousness and I’d think “yep, can’t really imagine it getting worse than this” and I’d rate it 10/10 and the next thing I’d know things would get worse. Unimaginably worse. Literally. So, I started rating these episodes 9/10, sometimes a 9.5, I just didn’t want my show-off of a nervous system getting cocky.

When my CRPS “went left”, a 10/10 became more like a 5/10. My nervous system was all “Hey, Caf, you know how you couldn’t imagine pain worse than that awful thing that I was already doing to you? Well, I can double it. Yep. Double. Aren’t I clever?”.

Things could always be worse. People in chronic pain tend to hear this phrase more than most. Some people think that it’s comforting to hear all the ways that you could be suffering that are worse than the ways that you are already suffering. Just for the record, this is not comforting at all.

Telling a person in chronic pain that things could be worse is like telling someone who is burning alive that at least they aren’t drowning and then expecting them to shut up and just burn quietly and gratefully.

If I’m in a mental place where I’m able to be grateful for the parts of my life that don’t suck, then I will do that. If I’m not, I can’t make the grateful happen just because you tell me to. When I’m feeling depressed, telling me that things could be worse actually has the opposite effect to that which you intend. I feel overwhelmed with sadness at the thought that life can be so horrible for so many people. I don’t feel better because I’m not them. Feeling better because others are worse off is not how I understand “grateful”, that’s how I understand “being a jerk with a superiority complex”.

When the pain progressed, it took all my energy to cope badly, let alone trying to find a way to cope well. I was already incapacitated enough by pain to be considered a disabled person and then suddenly it all just amplified. I fell off a metaphorical coping cliff and it was all I could do not to feel like jumping off a real one. I had no strength left to let the comments of others wash off my back and not enough clarity to let go of the idea that I should be better at coping by now, even though the game had changed.

“Hey, Caf, you know how you couldn’t imagine pain worse than that awful thing that I was already doing to you? Well, I can double it. Yep. Double. Aren’t I clever?”

I felt like a raincloud that was hovering over my online world and pouring down on the parade of people that bothered to be a part of that world. I hid from the internet and most people in the real world, too. I figured that if interacting was making me feel worse instead of better then I probably shouldn’t be interacting. I turned off all my social media notifications and deleted the Facebook app from my phone – mainly because I couldn’t trust myself not to check it compulsively, before I remembered that I needed some alone time.

I have to reframe how I see myself and how I want to interact going forward and the truth is that I don’t have all the answers. I’m not entirely sure what I want to share anymore, or who I want to share it with. I don’t really know what I’m capable of, physically or emotionally and I also don’t know when or how that will change again.

I aim to continue trying to cope as best I can with the crap that CRPS throws my way, that is all. I have neither the strength nor stability for plans or promises.

Hope will have to be enough for now.

Love & Blind Hope,
Caf

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  • Caged by Weather: CRPS in the Summertime

    It has been a really, really long Summer. I feel ragged, like I have been forcibly jammed into this uncomfortable cart on the CRPS roller coaster for far too long. The peaks are too short and the lows are too low. It’s hard to keep moving like this, to keep rattling along the tracks, unable to see whether there are ups or downs around the bends. I barely catch a glimpse of my goals before I am careening by in my out of control carriage and they are lost to the ever-gobbling past.

    The relief from my last ketamine/lignocaine infusion was a sweet crest on one of the few peaks of Summer. It was the break that kept me going, a brief respite from the seasonal torture. I was able to go for walks and visit the trees. I was able to push for strength through shorter recovery times. I was able to think and read and understand words, thoughts and emotions. I was able to appreciate it, however pain relief pays little heed to standing ovations and I soon felt myself sucked back under the humid weather.

    20150222 Keep Going trees


    Humidity is so much more powerful than I could have ever known in my life before chronic illness. There are so many parts of a body that can feel pain, so many pains that can be amplified by simple changes in air pressure and water in the atmosphere. Humidity can sneak inside, like a robber in the night, and cause a catastrophe of physical dysfunction before skipping away gleefully with no cops on its tail.

    I watch the weather forecast with brimming tears of hope that become falling tears of fear when there is no cool change on the horizon. I anxiously await wind changes, only to discover that there is too much change and find my body respond by changing pains instead of relieving any. CRPS craves an atmospheric consistency that simply doesn’t exist.

    There are so many different ways to hurt. Sometimes it’s a bittersweet relief to switch from burning edges to burning joints, to switch from stabbing to aching, from not being able to stand to not being able to hold a cup of tea. Other times, it’s just too much, too quickly, and too hard to keep up with. I try to find cause and effect between weather changes and symptoms but the lines are so blurry and the results so unwilling to behave the same way twice.

    I get so tired of tallying symptoms. It’s exhausting to be unable to escape, it’s exhausting to simply keep breathing. It’s exhausting to try to explain and exhausting to feel alone in the suffering because it feels pointlessly cruel to share it. It’s exhausting to see the disappointment in others when I am not doing better. It’s exhausting to see my own queries for the universe reflected back at me like that. It’s exhausting to force myself to paint on my coping face because it’s more exhausting to feel like a victim. It’s exhausting when coping doesn’t feel powerful, but rather like desperation in disguise. It’s exhausting to have so much uncertainty boiling below my surface, amongst the pain.

    The fatigue is so all consuming. It can keep me stranded in bed for much of the day, unable to be awake or asleep but just floating in a dense fog of existence and pain. There’s no fighting fatigue like that, it really doesn’t care how strong my coffee is, or that I’d like to be able to read and write, or that I’d like to go for a walk. I don’t feel like I ask for much, but the fatigue doesn’t care at all. It doesn’t care how small the requests are because it doesn’t live in our constructed human world of work and reward, of logic and reason. Fatigue makes up its own rules and I am just a puppet who dreams of escaping her strings. A very, very tired puppet.

    I have to lie down now.

    Love & Wishes,
    Caf

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  • Learning More from the Coping Techniques I’ve Learnt Before

    I began writing this post last week, at a time when I was feeling particularly low, before I remembered that Cognitive Behaviour Therapy had helped me cope with similar emotions in the past. Sometimes, a lesson needs to be revisited, revised and re-realised. It’s alright to be human and forget things, or remember them a little bit differently to how they were. It’s alright to try something again at a different time and hope for a different result.

    * * * * *


    I’ve felt so very lost lately, has anybody seen my mind?

    I am so tired of being imprisoned by the weather. It locks me in my body, it locks my body in my home. Sometimes the pain can be lowered by sitting under the air conditioning, sometimes nothing will help at all. There have been too many painkillers this past month, too many foggy brained mornings.

    I miss going for walks. I miss the trees, the freedom, the gleeful fear of passing a daddy kangaroo who’s basking close to the path. I miss the little jogs, my pounding legs, my heaving breaths. I miss the inspiration in the fresh air. I miss enjoying the movement more than I loathe the pain. I miss the ache of building strength, of feeling my muscles working to work better.

    I miss progression.

    A period of increased and incapacitating CRPS symptoms can feel like I’ve never had any improvement at all. There’s trauma here, in this experience. It’s a physical memory of more terrifying times. There was a time before I could cope at all with my chronic pain. There was so much loss, so much hopelessness, so much agony. It all comes rushing back when I become too sore to carry out my daily plans. The big picture disappears and all I have is trying to cope in a here and now that feels as permanent as it is temporary.

    Temporary is a hard thing to remember when the down time stretches on for weeks, then months.

    It feels like I’ll never go for walks again, never cook again, never finish another blog post. It feels like I’ll never have dreams again, let alone achieve them.

    It’s distorted thinking and I know it. I’ve learnt this before.

    * * * * *


    I take a break from writing this at this point. I wander down to a bookshelf in the front room. I pick up a ten-year-old teacher that I haven’t visited in years. My first self help book. Not the first that I ever encountered, not the first that I ever read, but the first that made a difference. Choose to be Happy by Wayne Froggatt.

    20150120 Choose to be Happy book


    I remember buying this book. I was so sore, so confused, so desperate. I purchased it in the bookstore that was next to the clinic where I saw the general practitioner that originally diagnosed me with RSD (because that’s what CRPS was called at the time). I didn’t know anything about Wayne Froggatt, or have any understanding about how my thoughts and beliefs shape my experiences, but I’d encountered a little bit of cognitive behaviour therapy in pain management texts and I felt like there was something there, like there was more to learn that I was yet to understand.

    I settle into the comfort of the couch and begin to read. I see highlighted passages that I don’t remember highlighting, my eyes dart quickly to see what was important to me on the first go around with this book. The words there make sense, they’ve been sitting on their pages being rational and wise whilst I’ve been distracted by life and confused by the blurry memories where these lessons used to live.

    I quietly thumb through the first 50 pages or so, remembering as I learn, learning as I remember. I consider going to hunt through drawers for a highlighter, there are more words that speak to me this time around. They’re easier to stomach without the apprehension that initially accompanied the harsh lesson that I am responsible for how I feel about things that happen to me.

    It’s a responsibility that can empower me or crush me with guilt, depending on how clear of a perspective I am able to find. On page 25, I find an explanation for this:

    “Many people make the mistake of confusing blame and responsibility. Blame is moralistic, unnecessary – and unhelpful. Why? Because it carries a moral stigma. It suggests that no only did you cause something to happen, but you should also be condemned and punished for it. No one wants to feel like that, so it is tempting to deny all accountability. As a result, blame retards personal growth. If you operate according to a blaming philosophy, you won’t want to admit any need for change.”
    – Wayne Froggatt, Choose to be Happy


    I slap my forehead as I think “of course”. Somewhere along the line, I slipped into blaming myself when I wasn’t able to police my thoughts well enough to prevent negative emotions.

    I kept thinking “I know that I don’t need to feel like this but I’m failing at stopping it from happening”. I then felt like a loser thanks to a core belief that any failure reflects badly on me as a person. I overgeneralised these thoughts, filtered out the rest of my being and concluded that I was, in fact, useless. I used this fact to predict the future – I will always be useless, nothing will ever get better.

    Honestly, it’s no wonder that I’ve been feeling like crap. Flares can leave me so much time to think and I didn’t even realise that I was using those thoughts to make the experience worse for myself.

    “Responsibility, on the other hand, is a useful concept. To see yourself as responsible (in a practical sense) for what you cause will motivate you to set about changing yourself – not because you ‘should’, but because you want to achieve a happier existence.”
    – Wayne Froggatt, Choose to be Happy


    I continue reading and encounter a list of common irrational beliefs that underlie most unhelpful emotions and behaviours. As a go through them, I refer back to what I wrote at the beginning of this blog post and it’s like I’ve been writing examples for how these beliefs might express themselves. The starkest of these being “I shouldn’t have to feel discomfort and pain. I can’t stand them and must avoid them at all costs”.

    The words I wrote are filled with angst, defeat and total failure at recognising the good parts of my life. I was viewing my pain and incapacitation as too much to be acceptable and so instead of accepting them, I was allowing myself to be victimised by circumstance.

    Froggatt calls this way of thinking “can’t-stand-it-itis” and I’d been looking at my whole world through this distorted lens. Can’t-stand-it-itis is placing limits on how much we can cope with before we lose our shit, how much pain we can deal with, how much discomfort is acceptable before breaking point. Can’t-stand-it-itis is the more insidious cousin of I’m-a-victim-itis.

    A more helpful way for me to view setbacks and unfortunate circumstances is to recognise that the situation is not ideal or comfortable, but I am capable of coping with discomfort. I can feel sore without catastrophising, I can feel sick without overgeneralising, I can acknowledge that some things are not going my way without concluding that everything is awful.

    It’s only been a few days since I started re-reading Choose to be Happy, but I’m already feeling clearer. I’m still experiencing high levels of pain, however I’m recognising that flares are temporary and thinking clearly is helping me to manage my symptoms more effectively.

    There’s a lot of temptation to search for new approaches when coping techniques seem to stop working and it’s easy to assume that something different needs to be done. When it feels like everything is crappy, it’s easy to throw the baby out with the bathwater in terms of stress or pain management techniques that aren’t working, to give up and label the technique “useless”. It’s worth considering that perhaps time has muddied the water, perhaps confusion or misunderstanding have tainted the things that we thought we knew.

    Learning something doesn’t mean that it can never be forgotten. Forgetting something doesn’t mean that it never had value in the first place. Sometimes, the best parts of a lesson are hidden between the words on the page and the understanding that the reader takes away, just waiting to be discovered upon the reader’s return.

    Love & Revision,
    Caf

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  • When Flaring Feels Like Failing

    I’ve been sliding backwards through increased symptoms of Complex Regional Pain Syndrome, losing functionality, enduring more pain and spending days simply trying to fight my way through the fog of confusion. I’ve been sick and tired and sick and tired of feeling sick and tired. I’ve barely been able to move, let alone exercise and I am missing the strength of body and mind that comes from being able to cook and look after myself. I feel lost, confused, useless and disconnected.

    I was supposed to be feeling better by now.

    There isn’t suddenly a magical cure for CRPS, however I was really holding out hope that my mid-December ketamine infusion would bring more lasting relief than it has. I was hanging out for the pain to lift, having had pain increases and functionality decreases for the previous few months. I was dying to “get back to it”. I was craving walks, talks, adventures and freedom. I was so mentally prepared to get up and go, go, go, that I forgot to expect that life would not turn out the way that I expected it to.

    The infusion went really well. No major hiccups. My pain had been rising through the humidity of the night before, however it proceeded to drop quickly once the drugs started dripping in. Pain levels continued to lower throughout the day and I had a lovely rest.

    I continued to rest over the next few days and my pain levels stayed nice and low. On the fourth day, it felt like time to get moving again and so I climbed onto my exercise bike for half an hour of gentle peddling. Just before I was done, I began getting some alarming shooting pains through my right foot.

    I ran myself a post-workout bath with Epsom salts and sunk into the water to soak out whatever comes out of bodies after they’ve been put to use. It was very relaxing, until the foot that had doled out those little lightning pains decided to cramp, causing agony through my ankle and up my leg. I quickly grabbed my toes, yanking them in the opposite direction to the cramp and holding on until the contraction eased.

    That night, the proper flaring started and after that I didn’t want to talk to anybody.

    I felt like a failure. I didn’t feel like I live with an incurable and unpredictable disease, I just felt like I’d failed at life.

    Logically, I know that’s not true. I didn’t choose to get sick. I didn’t choose life with chronic pain and I’m not still living with the pain because of laziness or as a result of bad decisions. Logically, I know that. These past few weeks though… all I have felt is undeserving and disappointed.

    And then I came across this quote…

    20150103 Angelika Buczkowski quote
    Quote taken from In today’s society, chronic illness is viewed as a personal failing


    I read this and I thought “that is the thing that I’m feeling”.

    The wave of expectation isn’t rolling in off the ocean of other people, it’s bubbling up out of myself. I feel like a failure because I feel like I have failed and the only way to fail is to have had an opportunity to succeed. My life is spent putting so much effort into coping with pain and illness that it’s easy to forget that defeating the pain is not a realistic goal and that my challenge is to simply continue coping.

    I become impatient and distant and I feel an undercurrent of belief that I must have done something to deserve this – something that I could have avoided doing.

    It would be easy and kind of logical to think that I set off the flaring by riding my exercise bike. It would be easy to conclude that I shouldn’t have moved or that I should have waited longer before exercising. Unfortunately, CRPS does not obey the laws of logic.

    The truth is that I felt fine before I rode, I felt strong enough and like I’d recovered enough from the ketamine infusion. I felt ready, so I was ready. Had I remained inactive, the flare could have still come on from just walking down the hallway, the wind changing, sitting strangely, sleeping funny or just for no reason at all. The only difference would have been that I would have missed out on a dose of endorphins on my way to a couple of weeks on the couch.

    This flare hit suddenly, powerfully and with days of storms and humidity riding into the battle like some sort of evil cavalry. I was trampled under the pressure of so much assault and could barely find the will to raise my head from my pillow. My refusal to lay down on the battlefield and give up sometimes seems like a burden instead of the blessing that I know optimism to be.

    The two me’s in my mind bicker like elderly sisters. Keep going. Give up. Try harder. Give up. Don’t listen to her. Don’t listen to her.

    Without hope I’d never get through any of the hard times. Recognising that I must continue hoping and trying through rising pain levels can be so overwhelming that I suddenly struggle to breathe. I have no choice but to keep trying and that means everything that pain makes more difficult is about to get a little more painful and a little more difficult.

    My screams of frustration escape me like groans and are swallowed by a sky that’s vast and unforgiving. It doesn’t matter that it hurts. It doesn’t matter that it’s hard. I have to keep fighting for strength no matter how bad the pain gets, no matter how tiny the battle manoeuvres might seem, no matter how bleak the future appears.

    It’s hard to admit when my health has started to deteriorate, again. It’s the again part that has worn me down. Having a chronic illness can feel like being a constant bearer of bad news. My dismay is at both needing to admit a decline to myself and also needing to inform my friends and family that I’m not doing as well as I was a few a weeks ago. I’ve often feel hesitant about offering up the state of my health for discussion by mentioning a change. The fluctuations so rarely make sense and I tire of trying to explain without becoming invested in what my current situation might mean for my future.

    With CRPS, how I am today just doesn’t mean that much in terms of how I’ll be tomorrow, or the next day, or a week after a ketamine infusion. Practise has taught me that the best thing I can do is simply keep making the most of my abilities every day. I have to adapt activities around my fluctuating handicaps and adjust my attitude when life stops the pieces of my plans fitting together.

    I’m happy to report that in spite of a stomach bug followed by some ridiculous heat in Melbourne, my pain levels have actually dropped back down again. I’m not going to read anything into that. I’m just going to enjoy it while it lasts.

    Love & Flux,
    Caf

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  • Injures are a Pain in the Neck

    One of the hardest parts about living with CRPS is suffering another illness or injury on top of that basic level of chronic pain. It’s like being kicked when you’re down, except that you’re never really up and so every kick seems to happen in the corner of a dark alley and come from the boots of a psychotic mugger who refuses to accept that they’ve already beaten out every single little crap that you had to give.

    The worst part is that living with chronic pain can make it a lot easier to end up injured than living in a healthy body. We’re a weak and wobbly breed. In the past three months, I obtained two separate “repetitive stress” injuries from activities that I had participated in one time. One time. My body is aspiring to be that shepherd kid who cried wolf excessively and got his whole damn flock killed.

    One of the most common symptoms of CRPS is developing Central Sensitisation, which is kind of the opposite thing to a whole town of people ignoring that wailing wolf kid. Instead of ignoring my body’s cries, my nervous system gets more and more anxious about what’s happening. It starts freaking out about tiny little changes in stimuli as though that change in wind direction is a battalion leading a charging assault.

    A regular nervous system feels a twig scratch an arm and recognises it to not be a problem and maybe it’s even helpful if the arm was itchy. An anxious nervous system feels a twig scratch an arm and thinks that maybe that was a machete and probably we are dying now but just in case let’s send in all of the pain and inflammation to make this stupid human realise how much trouble they’re in.

    I hurt myself a couple of weeks ago.

    It was totally ridiculous. I was lying in bed, like people with beds do. It was morning and my prince had already left for work, so I was waking up slowly and getting me some fluffy dog cuddles. As I lay there on my left side, I wondered, would I be more comfortable on my back? I thought that it wouldn’t hurt to roll over and find out. I was wrong.

    A scene set for disaster...

    A scene set for disaster…



    I rolled over and a loud crunching sound was heard vibrating out into the depths of space. Agony seized my neck and tiny bolts of lightning began shooting through my upper back. It might seem like I’m exaggerating, however nobody that I’ve told this story to has really seemed to grasp the enormity of the injury. I rolled over in bed, you guys. It freaking hurt and it was a big deal. I realise that it’s not as glamourous as, say, falling off a pretty palomino pony, or accidentally missing a step during a spectacular series of backflips, or saving an orphanage from being obliterated by dragon fire…but it was dramatic.

    My body does this strange thing where it overreacts to physical stress, but not until it’s been about a day since the stress occurred. It’s almost like my body spends twenty four hours pondering “Am I really hurt? I think I might be hurt. A thing that happened might have damaged me”, before it decides to lock up in spasm, inflame for “protection” and scream at me using high pain levels.

    The result of this delay between the injury and the agony is that I think that I’m alright, continue about my business with a bit of an extra ache and then find myself waking up the next morning unable to do anything at all.

    Fun fun fun.

    The only situations in which it’s really, truly fun to lie on the couch all day are when you are getting out of something that you didn’t want to do at somewhere that you didn’t want to be, or you have fulfilled all responsibilities and earned a day of lazy. Otherwise, you’re just there because you have to be and does anybody really like being forced to relax? It just doesn’t seem like that’s how relaxing is supposed to work. I’ve had years of forced couch time and I have never found that being too sore to move creates a cool opportunity to chill out.

    When I’m injured, I have to put a lot of mental work into not actually going mental. Days pass as I lie there waiting, minutes seem like months and a shadowy demon whispers in my ear:

    “You’ve never really gotten any better, all of that improvement was a waste of time. This is your life now, this couch, these screens. Wallow here. Remember when you thought you’d be stuck at this level of inactivity forever? Well, now you are. Settle in, I want to taste your tears. That’s it, that’s it, let them fall from your eyes like the joy has fallen from your life. Feed me your sorrows as your failing body hardens around your squirming soul. This is your prison now. There is no escape.”

    It’s fair to say that this is an extreme reaction to a temporary situation. It’s a conditioned reaction from living with my CRPS affected areas that have never actually recovered from their injuries. Many experiences from my early days with CRPS have left traumatic scars.

    A mobility limiting injury can throw me back down into a mental world of not coping. My body reacts with anxiety before my mind invents a reason to be racing. I have to pay attention to be able to recognise that this is happening, that my physical sensations are guiding my thoughts and that I have the power to let those thoughts go. I have to find the strength to deny the extra pain and incapacitation as a reason to give up and cry. I have to be strong enough to recognise that (in all likelihood) the injury will heal and I will be okay again. I have to be brave enough to trust my body, despite its history of letting me down. It’s a lot of thinking and realising and letting go. It’s a lot.

    After the darkest night of an injury has passed, I am again faced with the daily challenges of living with CRPS, only I am weakened from the weeks of fighting. It’s hard to flick that switch that takes me from crippled and destitute to hopeful and determined. That switch is fickle and flimsy, kind of like the rest of my CRPS ravaged and poorly wired nervous system.

    I start out small. I cook some food. I move more and then need to rest more. I usually flare up the injury a couple of times before it is all the way better. I have to. Leaving parts of my body immobile only helps healing during the acute phase of an injury, once I’ve shifted into recovering then I need to work with the muscles to help them remember how to flex without spasming.

    I’d say that the key is pacing, but pacing is not a key. Pacing is a tool, an idea, a collection of guidelines. It’s imperfect, it doesn’t always work and it doesn’t often work the same way that it did the last time.

    Pacing to increase strength in spite of chronic pain is like trying to use a remote control from just beyond the receiver threshold. It might click if you fluke just the right angle at just the right time, or you might end up waving your arm in the air and pressing buttons until you have to rest but the channel still hasn’t changed and you don’t feel like you’ve achieved anything. The only way to justify hurting myself when I’m trying to pace my activities through a recovery is to remember that if I hadn’t been using the pacing tool then I’d probably be in even more pain from moving too much or too little.

    Balance can be an airy-fairy concept.

    By the time that I’m coming back from an injury, I am mentally drained. I feel raw, as though the skin on my body has thinned to opaqueness and my mind is too tired for thought. It gets harder to relate to other people for a while, gets harder to listen to their stories, or properly consider their views and feelings. I tend to retreat a little bit, to shy away from social media and often regular media to boot.

    Rebuilding strength after an injury doesn’t take as long as it did to gain the strength the first time, however it’s not a quick process. I am finally through the can’t-hold-my-head-up phase of having a strained neck, however I am still far from functioning at the pre-injury levels.

    My mind likes to turn physical weakness into mental weakness and so I’m seeing a lot of “You aren’t worth anything, you’re no good, you’re useless and pointless” crap cycling out of Rawthoughtville. I’m recognising and processing these thoughts. Mostly, I process them right into the trashcan in the bottom corner of my mind’s desktop. Sometimes the trash won’t empty because “those files are in use”, but I keep on with the physical pacing and as my body strengthens, my mind catches up.

    The most important thing to remember as I cope with an injury is that, to a certain extent, I know what I’m doing. I’ve been hurt before. I’ve been hurt for a long time. I’ve been so hurt that I could not walk or sit up, for a long time. I’ve participated in several pain rehabilitation programs and read more books and articles on the topic than I can remember. I’ve healed before. It’s possible.

    I’ll keep going through the motions and the future will roll in like the weather on the winds.

    Love & Crooked Smiles,
    Caf

    P.S. This was written last week, however life got in the way of me publishing. My neck is feeling much better now. I feel like I’ve been wandering backwards through life for weeks, but it was ketamine infusion day yesterday and once the hangover passes, I should be back on track! x

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  • Under the Shroud

    The shroud came down on Saturday afternoon. Blanketing me from head to toe, floating around my body like a cloudy veil between the world and me.

    I recognise it now, although the shroud’s favourite game is disguise. Sometimes the shroud would feel like me, like some sort of real me that was always lurking underneath the me that I am on better days. Sometimes the shroud would feel like injustice, like it was thrown over me by the abusive or ignorant actions of another person. Sometimes the shroud would feel like despair, as though the whole world was lost to darkness and the me that I am on better days was simply ignoring this fact.

    20141118 Under the Shroud


    Being under the shroud feels like being depressed, but it’s not quite that. It feels like being sad, but it’s not quite that. It feels like being tired, but it’s not quite that.

    It’s suddenly harder to understand words. They look the same, those oddly sized collections of letters. They look like words, but they don’t convey any meaning. I understand and then I don’t. No sooner do I get it than it’s gone. It feels like a sudden language barrier between me and a book that I’ve read a hundred times.

    I feel the thought zaps fading into unsuspecting brain matter before they reach their destinations. My mind draws blanks instead of ideas. The mundane tasks of the everyday become so confusing. Emotions rise suddenly and don’t fit with my reality. The pain becomes more difficult to tolerate as it sears me from my skin to my bones.

    The shroud separates me from my usual state of consciousness, my usual realm of functioning. It’s like drunkenness without the drinking. Like dreaming without the sleeping. I walk around feeling separated, lonely and more vulnerable than if I was naked. The shroud feels like a covering, but it doesn’t protect. It perforates the energy field around my body, poking holes in my defences and preparing to tear at any moment.

    I speak, but it’s harder to say things. I do, but it’s harder to feel. I stumble through the actions that keep me going and I focus on keeping the shroud from merging with my identity. I can’t shake it off but it isn’t forever stuck. The shroud will fall when the shroud is ready, like a satiated leech.

    I say that I’m flaring when the pain rises, but really, a flare is so much more than that. It’s the complexity of Complex Regional Pain Syndrome. It’s the brain fog and the fragility. It’s the tension seizing parts of the body that didn’t even know they could tense. It’s the overwhelm and impaired cognition. It’s the constant desire to lie down and cry versus the will to go on, to continue to function through the flare for however long the shroud stays down.

    Under the shroud is a strange kind of limbo. I can rest there, but I can’t stop. The shroud won’t be fought off, but it also won’t leave if I stop fighting. I fight for the tiny parts of functionality. I fight to eat, to dress, to bathe and to strengthen both my body and mind enough to endure a flare without slipping backwards into weakness.

    Fighting the shroud isn’t about bravado, mostly it’s about fighting the bullying thoughts that circle my mind. The shroud can block my ability to see ahead, to comprehend the temporary nature of angst and to imagine an end to the suffering. One of the shroud’s favourite disguises is permanence, but I refuse to believe its deception. The only way to fight thoughts is to recognise their insignificance and let them go.

    There is danger in letting weeds of doubt spread through my mind. Weeds grow so quickly and overtake so thoroughly. Weeds can disguise a beautiful garden as an unkempt tangle. If I allow my mind to become overgrown with overwhelm then I freeze up. I lose the ability to keep moving and movement is the only way through the pain.

    I have to move when it hurts like Hell. I have to move when it feels pointless. I have to move no matter how much it feels like I’m slipping backwards. I have to move or I lose my legs, again. I have to move or I lose my hands and my ability to make a smile. I have to move because the only alternative is surrender and I have no intentions of giving up.

    When the shroud is down, I must remember that there is never a real reason to suddenly feel upset about an unchanging situation. I must remember my bottom line:

    If I am uncomfortable then I must let go of the beliefs that are keeping me that way. Comfort isn’t given, it’s cultivated. I can learn to feel comfort and ease in any situation, regardless of my initial reactions. I can learn to separate my emotions from my physical pain.

    I fight to let go until I feel like myself again. It’s the biggest and most private of battles. It’s a war waged in silence, with kindness the only weapon. I must be kind to myself, take care of myself and let go of anything that is standing in the way of me finding a peaceful way to be alive.

    I will move until I am through the fog, until the shroud falls and I can see again. I won’t assume it will leave and I won’t assume it will last. The shroud is an uncertainty but my determination is not. The shroud is a symptom of disease and it doesn’t belong, but I do.

    I refuse to be smothered.

    Love & Focus,
    Caf

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  • CRPS and the Springtime Blues

    Dear Audy,

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

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

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

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

    Backyard chillin' with buddies is a wonderful antidepressant.

    Backyard chillin’ with buddies is a wonderful antidepressant.



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

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

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

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

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

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

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

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

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

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

    Love & Springtime Blues,
    Caf

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  • 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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  • 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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