Out of the Nothing and Into the Unknown

Jul 22, 2015 by

My understanding of life is kind of like a wall that I build and climb, brick by brick, step by step. As I get higher, I see more, understand more. Each time I learn something new I add another brick and grow some more.

Earlier this year, I fell from atop my wall and splattered on the ground like Humpty Dumpty. None of the king’s horses or men showed up to help so I just flailed about limply, trying to put myself back together again.

20150722 Brick Wall

I made a kind of Caf shaped thing out of the broken pieces and I tried to climb back up my wall of understanding only to discover that the wall itself was breaking too. Some of my carefully placed bricks were already gone, some fell out place when I tried to look at them closely, some of the foundation crumbled away as I tried to replace the missing bricks.

When the foundation goes, a wall is done for. My understanding of life turned to rubble. All I had were some remnants of a past that had crumbled when it clashed with the present and the ruins blocked the path towards the future.

Nothing made sense anymore. Not me, not what I thought I knew, not what I thought I wanted to do, nothing seemed true, it was all just nothing.

I hid away and I tried to figure it out. I poked my head out into the playground and I tried to figure it out. I read some books and I tried to figure it out. I spoke in instant message stickers and I tried to figure it out.

What is a me? Where do I fit in? Why do I have to fit in? Oh shit, I’m so sore! What do I want to do? What can I physically do? Oh shit, I’m so sore!

I couldn’t write for so many months that I began to believe I would never write again. My hands hurt so badly. So badly. How could I write when I struggled to even scroll on a touchscreen? Dictation hurts my face and is not the same thing, it’s just not the same thing.

‘Maybe I’m not a writer after all,’ I thought, ‘I think a real writer would find a way to write even if they were only a Caf shaped thing with painful stumps for hands. Maybe “Writer” was just a costume that I wore for a while, just a phase that I believed for a little bit. Maybe I’m just a self important poser with nothing better to do.’

I hid away some more and I tried to figure it out. I watched some television shows and movies and I tried to figure it out. I drank a whole bottle of wine and I tried to figure it out.

Rebuilding myself and my wall of understanding became too difficult, too daunting. I had to give up for a while. I focused on the physical. Do the stretching, do the exercises that help with the pain, ride the exercise bike, soak it all off in the bath. Day after day, I did the same things again and again. Hoping for strength to return, hoping for the pain to recede a little, hoping for something to change.

Hoping to just not be hopeless.

And then, one day, things actually did start to change. The pain did recede a little (or I adjusted to the new pain levels, I never can tell the difference). The strength did return a little. My hands began to work a little. I thought, ‘I can write now!’

I sat down to do so but the words wouldn’t come out. I screwed up my face with trying and then something dawned on me. I remembered how I’d fallen from that wall of understanding and shattered. I remembered how the wall had crumbled down after me. I was still buried under the rubble of confusion. Life hadn’t started making sense just because my hands worked a little.

What is a me? Why do I be this ow that hurts? What do I, how do I do…word stuff?

I thought that I’d better try harder at being a person. ‘I will hang out with the other people!’ I thought, ‘I will drink coffee with a person, see a movie with a person, invite a person over for dinner. I will do person things!’

I did the stretching, I did the exercises that help with the pain, I rode the exercise bike, I added some yoga into the mix, I soaked it all off in the bath and then, sometimes, I personed a little with other people.

Occasionally I’d come home from personing and burst into tears at the ridiculousness of it all. I couldn’t remember how to relate. A lot of the time, I couldn’t even remember how to care, I’d just say things that I thought I might say if I actually felt real feelings. I’d have conversations that didn’t involve telling any lies and yet afterwards I would feel like a fake.

‘I am just a Caf shaped thing pretending to be a person,’ I thought, ‘Nobody seems to notice because I am a very good pretender. Maybe if I pretend for long enough, I will forget that pain burnt me to ash long ago and I’m not really real at all.’

I guess on some level I figured that if I was going to be a convincing fake person, then I should probably keep doing the things that a real person would do. You know, really get into the role and make it believable. Method acting, if you will.

I did the stretches and the exercises. I did the yoga and rode the exercise bike and soaked it all off in the bath. I hung out with other people and pretended to be one of them. I sat down to write and spewed nonsense onto pages. I cried when it all hurt too much. When the tears had dried, I started again.

And then, one day, things actually did start to change. I read a comic and I laughed. I watched a happy movie and I smiled. I met up with characters in books and they felt real again. I met up with real people in real life and I felt real again.

I actually felt real feelings and I could finally stop pretending.

I cleared away the rubble from my previous understanding of life. I pondered over the broken pieces as I went. There were ideas that used to seem important but didn’t anymore, so I threw them away. There were ideas that seemed more important than ever, so I let them stay.

I began to lay the foundation for a new wall of understanding. I read some articles, thought some thoughts, used my regained power to feel some feelings and started to find some lesson bricks that belonged in my new wall. As I added the new bricks, some of the old ones that I’d held onto made sense in new context, so I cemented them in too.

I climbed up a few bricks. The view cleared and expanded.

Life with CRPS can always get worse, chronic pain can always get worse. Earlier this year, my pain got worse and it’s taken me a long time to figure out that this has affected me in both obvious and insidious ways. It’s changed me right down to my core and I was no one for a while as I tried to recognise the new person in the mirror.

I am not no one anymore. I am a person who does the exercise things, a person who feels real feelings and a person who writes them down when she is able. I am a person with a low, yet wide wall of understanding. I’ll keep building it, but I don’t know what I’ll see as I climb, I don’t know who I will become and I don’t know if I even want to know that at all.

I don’t want my life to be consumed by my pain and yet I don’t have the option to live like it doesn’t play a huge part in what I am able to do every minute of every day. I don’t know how to reconcile these limits and the things that I want to do. I don’t want to be a model patient, or a shitty one, or someone who is only a sick person, or someone who never lets their pain get them down because they are oh, so inspiring.

I want to explore all of the feelings, the light and the dark, the sweet and the sour. I want to see the grey and taste all the flavours. I want to be real person, a whole person. I want to ignore the pressure to paint on a happy face as much as I want to interact with people without feeling like a burden or a depressant. I want to describe but I don’t want to complain. I want to find a way to be comfortable when I’m lost in states of opposition.

And so I wrote this story and I tried to figure it out.

Love & Rebuilding,

P.S. This is the hilarious comic. I will probably be laughing at this forever.

P.P.S. This is the happy movie. It’s a heart warming movie about somebody dying.

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    When Things Went Left

    May 25, 2015 by

    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,

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    Caged by Weather: CRPS in the Summertime

    Feb 22, 2015 by

    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,

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    A Ketamine & Lignocaine Infusion for CRPS Saves the Day

    Feb 4, 2015 by

    Last week, it finally happened. A break from the pain. It was truly and totally amazing and my wonder was possibly enhanced by the fact that I was kind of tripping out at the time. What ketamine takes away in pain, it likes to give back in sparkly and confusing mind vacations.

    My lowest pain level in years.

    My lowest pain level in years.

    In December, I had a single day ketamine and lignocaine infusion. Unfortunately, the pain relief wore off really quickly and by the week after the infusion, I was flaring back up to levels of pain that are far, far from manageable. I was experiencing a severity of symptoms that hadn’t been that bad since the days when I needed a wheelchair to get more than a few metres. Along with the physical symptoms, my ability to cope took a beating and I found myself cycling back through psychological issues that I’d thought were dealt with.

    At the exact same time as my pain was returning, the weather in Melbourne started gusting in on this weird pattern that saw heat and humidity blowing across the desert from the tropical north west. Temperatures went up and temperatures went down, but the high humidity wouldn’t budge. I completely blame this weather pattern for how much pain I was in during December and January, it was the only major variable and I know from experience that humidity is the biggest enemy to my easily inflamed body.

    *Shakes fist at the sky*

    Realising that I was falling further and further away from coping or being functional, I contacted my pain specialist in the hope that I could go back early for the next infusion and perhaps stay a little longer than a day. He’s a super helpful guy, so I quickly found myself booked in for a three day infusion. Knowing that there was some relief in the near future made it a lot easier to cope with high pain levels for the couple of weeks that I had to wait.

    A couple of weeks is nothing, really, nothing at all. I felt very lucky, many people wait years just to have a chance at a ketamine infusion.

    I have never before felt as excited to go to hospital as I did last week. A couple of days before the infusion, the weather cooled down and my pain levels dropped substantially, from a constant 8-9/10 to about a 6/10. Pain ratings are a weird and subjective thing, but I knew my pain usually drops about 4-5 points during an infusion. The December infusion started at 8/10 and I think it might have hit a 4/10 before bouncing right back. This time, I was starting out lower and so I had a lot of hope that I’d feel the lowest pain scores I’d had in years.

    I tried to keep my focus off of hoping for long term pain relief and just looking forward to lower pain levels while I was plugged into the IV bags.

    Once I was hooked up and ready to go, the doctor popped in to tell me that I was going to be getting a higher dose of ketamine than usual. In fact, rather than building up the dosage at all, I was just going to get the highest amount that I’ve had in the past for the entire duration of the infusion.

    I was a little nervous, but mostly thrilled. I had a crappy experience with high doses the first time that I had a ketamine infusion, however there were a lot of other crappy things about that infusion and these days I am used to how it feels to be on the drug. Stress and fear can quite easily get in the way of pain relief so being able to cope with them is important.

    The drug dripped in and any sort of ability to concentrate drifted away. Within an hour or so, I was already feeling less pain. I plugged in my headphones and snoozed the afternoon away in a loop of Taylor Swift, Damien Rice and Ella Hooper (there might have been a little drugged up splurging on new albums).

    By dinnertime, it was all I could do to raise my head and munch on a few hot (lukewarm) chips. I had a serious case of THE NAUSEA. It felt like all I could do was burp up foam. I barely ate anything over the next 24 hours. Feeling nauseous is highly unpleasant, but do you know what it’s better than? Being on fire. It’s much better than that. So I sucked up any urge to stress about my gurgling belly and just enjoyed the way that my pain levels kept dropping.

    I usually get a little bit nauseous during an infusion, however I hadn’t felt anything like this since that first high dose infusion years earlier. Why this time and not every time? Your guess is as good as mine, or the doctor’s.

    I find it hard to sleep on ketamine, but also hard to be awake. I just drifted along in a dream state, fluctuating between feeling like time passed quickly and very, very slowly.

    My pain level was bouncing around between 4/10 and 6/10 on the second day. That’s when the lignocaine infusion was added. In the past, adding the second infusion has brought my pain down further and usually helps with the nausea. It worked a treat this time. Not so much on the nausea, but when I woke in the early hours of the third morning, I could hardly feel the burning at all.

    My pain level was a 1/10. A ONE. Just a tiny little one. Barely there at all.

    It was heaven. Temporary heaven, things that are that magical can’t be expected to last.

    I was unplugged early on the third day as my tummy was getting a bit react-y at the infusion point (I have these infusions subcutaneously because I don’t tolerate needles in my arms well). I was very OK with this, I was still enjoying pain levels below 4/10 and was looking forward to being able to eat food again. I came home, rested up and watched my nervous system putting on a show.

    Pain goes up, pain goes down, pain goes round and round and round.

    It’s important to remember that ketamine isn’t a cure, I have never achieved remission from infusions (although some people do), I simply get to enjoy lower pain levels that make it easier to function as a person. It’s still Summer (kind of) and I’m still getting inflamed. I’m still needing painkillers at night and sometimes during the day, but the difference is that they are working a lot more effectively at the moment.

    My arms and legs feel like arms and legs, rather than uncontrollable burning blobs attached to my torso. I am able to move and cook and exercise. These things still hurt, but I can do them – that’s the difference that the ketamine makes for me. It’s the difference between being useless and being functional, not the difference between pain and no pain.

    My immediate goals are the same as always. I’ll keep doing what I can do, try not to overdo things, try to keep my pain levels manageable and build my strength as much as possible. The best thing to do with low pain levels is to simply enjoy them while they last.

    Love & Relief,

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    Learning More from the Coping Techniques I’ve Learnt Before

    Jan 20, 2015 by

    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,

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    When Flaring Feels Like Failing

    Jan 3, 2015 by

    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,

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    Injures are a Pain in the Neck

    Dec 17, 2014 by

    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,

    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

    Nov 18, 2014 by

    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,

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