Tag Archives: Pain Management

A Ketamine & Lignocaine Infusion for CRPS Saves the Day

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,
Caf

  • More about me…
  • Follow me on Twitter
  • Like Rellacafa on Facebook
  • Subscribe on Youtube
  • 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

  • More about me…
  • Follow me on Twitter
  • Like Rellacafa on Facebook
  • Subscribe on Youtube
  • 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

  • More about me…
  • Follow me on Twitter
  • Like Rellacafa on Facebook
  • Subscribe on Youtube
  • 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

  • More about me…
  • Follow me on Twitter
  • Like Rellacafa on Facebook
  • Subscribe on Youtube
  • 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

  • More about me…
  • Follow me on Twitter
  • Like Rellacafa on Facebook
  • Subscribe on Youtube
  • Noticing the Disappointment Cycle

    Dear Audy,

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

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

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



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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

    Love & Actual Positive Thinking,
    Caf

  • More about me…
  • Follow me on Twitter
  • Like Rellacafa on Facebook
  • Subscribe on Youtube
  • The Problem is in the Positivity

    Dear Audy,

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

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

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

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

    20141027 Gandhi Quote


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

    Love & Learning,
    Caf

  • More about me…
  • Follow me on Twitter
  • Like Rellacafa on Facebook
  • Subscribe on Youtube
  • Setbacks or Life Pauses: Choosing My Perspective

    Dear Audy,

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

    It was a really nice change.

    20141020 Spring garden


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

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

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

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

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

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

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

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

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

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

    Love & Little Steps,
    Caf

  • More about me…
  • Follow me on Twitter
  • Like Rellacafa on Facebook
  • Subscribe on Youtube
  • 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

  • More about me…
  • Follow me on Twitter
  • Like Rellacafa on Facebook
  • Subscribe on Youtube
  • An Amazing Consultation with a Pain Specialist

    Dear Audy,

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

    Me: Yes please! ASAP please!

    Pain Specialist: Sunday?

    Me: I’ll be here!

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

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

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



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

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

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

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

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

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

    Love & Smiley Hugs,
    Caf

  • More about me…
  • Follow me on Twitter
  • Like Rellacafa on Facebook
  • Subscribe on Youtube