Tag Archives: Pain Management

An Old Treatment, A New Hope

Dear Audy,

Many moons have passed since I first gave up hope that doctors could help with my CRPS. I’d tried everything, you see, everything that was available. I worked hard at physical rehabilitation. I attempted to keep moving and build strength. I practised Feldenkrais to ease pain and improve neural pathways. I learnt new ways to relax, to let go and to continue coping with the trials of constant pain.

Each time I slid backwards from an improvement, doctors concluded that either the medicine didn’t work on me, or that I had psychological issues preventing me from trying hard enough. The repetition of this cycle ran through several doctors and twice led to me being shown the door that opened from the doctor’s office into a cold, painful world of loneliness and despair.

A wet Baby Zhen Zhen
I was a frazzled panda (click image for source)

After a while, it was hard not to believe them. Was my condition too obscure to be treated by modern medicine? Was I trying hard enough? And so, I’d crumble for a while and then I’d try even harder. I’d find a new doctor, one that was willing to learn with me. I’d find a way to improve, to take the first step upwards and to climb even higher before the next fall.

Finding motivation to heal was never my problem.

I have a theory as to why chronic pain patients often encounter the attitude that they are being lazy about improving their own condition. It’s because a lot of people actually are lazy. There are lazy people who are sick or disabled, same as there are lazy people who are perfectly healthy. Some of these people are miserable and some are quite content, that’s their business. The important thing is that none of them is a representation of any other individual.

It can be hard to remember that. As hard for professionals as it is for the rest of us plebs. We love to generalise, it makes understanding the things around us easier. In searching for a non-vindictive reason why some doctors might treat a patient terribly, it occurred to me that perhaps those doctors are merely unaware that they are blinded by patterns.

Could the answer be that simple? Doctor sees a lot of patients that are not taking whatever steps are possible for them to improve their condition. Then, doctor sees patient whose condition is declining and assumes, regardless of what their mouths say, that one of these things is exactly like the other. I mean, they look the same, right? Sick, miserable people. It’s easy to assume that the one proclaiming to have followed orders is suffering from a lying mouth, rather than real but immeasurable symptoms. It’s much harder to approach each patient with a fresh slate and an open mind.

I guess some doctors are lazy too.

For over a year, I pulled myself out of the cycle. I couldn’t find the point of continuing to pay steeply to spend a few minutes with a specialist that could only offer me repeat prescriptions for meds and rehab. I found that I was doing better on my own. I used the skills I’d learnt and I did the best that I could. I improved a lot before the big crash of 2013.

After months of being at my lowest, unable to look after myself, unable to do much of anything at all, I desperately looked back towards the doctors. I returned to the last pain specialist I’d seen, only to be directed back towards pain rehabilitation programs that operate at a beginner level. I was already well advanced at “doing my exercises”, “pacing myself” and handling psychological pressures. I didn’t feel like the answer to my decline in health was to have somebody re-teach me the things that I was already doing.

The CRPS had outgrown the rehab, it was bigger and uglier than it had ever been before. I needed something more than inspiration or a kick up the butt to bring me back.

For a long time, my GP had been recommending that I see a local pain specialist. I was not very keen. I just…couldn’t be bothered. I couldn’t be bothered rehashing my long and complicated medical history to a new doctor when there was no hope, no new drugs, no fancy new treatments. I had to reach utter desperation before I could even consider beginning again with a fifth pain specialist.

Mostly, I made the appointment to placate other people. You know, the people who love me and wouldn’t let me give up. The ridiculously amazing people that were looking out for my wellbeing when I was too lost to do so for myself. I waited months for the appointment and still, the day before, friends and family had to talk me into going through with it when I just couldn’t see the point.

I am so grateful for their hope, it was lighting the way to a brighter future that I no longer believed in.

My new doctor has been the most helpful pain specialist that I have seen. No, there aren’t any new and amazing treatments for CRPS. However, there is this older one that he was willing to try again…

It turns out the undesirable reaction that I had to my first ketamine infusion was not the giant stop sign that the rest of the doctors saw. My reaction (a fairly severe withdrawal process, you can hear the story from past me here) was not “impossible” as I had been told by the specialist that oversaw it. It was simply a reaction that was not the one we were hoping for. It didn’t mean I needed a giant red KETAMINE stamped in the allergy section of my medical file. Most importantly, it didn’t mean that another infusion would have the same result.

The thing about the new doctor is, he’s logical. He completely validated my previous experience with ketamine and agreed with me that one messy infusion was not enough to conclude a drug allergy from. He didn’t treat me like a drug seeker for wanting to try it again. One failure was not enough to prove that ketamine would always fail.

So we did it again, differently. Mid-October, I was admitted into hospital for a five day ketamine infusion. It went well, but I shall save describing the experience for another day.

This post is about hope. I lost hope in doctors, in the medical system, in my body, in my life… Had I not had wonderful people pushing me to continue trying new doctors, I’m not sure that I would have done it on my own, which would have meant missing out on the best opportunity for improving my CRPS that I’ve had in years.

I’m so glad that my new doctor did not make presumptions about me. I’m so glad that I didn’t pigeonhole him before he could help me.

I’m so relieved to have hope on my side again.

Love & Opportunity,

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

    Dear Audy,

    It’s been a while since you’ve heard from me. Had I known that I would be going dark for such a long time, I might have let you know. However, I did not know and could not tell that the shades were about to drop, nor that the light would remain blocked until I had learnt to thrive in the darkness.

    I have been cocooning.

    Click image for source

    Click image for source

    This year brought some of the toughest challenges that I have faced during my seven years in chronic pain. My flares increased, my body deteriorated and my options faded away into blurry memories.

    My hands were taken completely, stealing my ability to write, to pet my dogs, even to feed myself at times. My voice was silenced, trapped behind the grate of a malfunctioning jaw and inside fingers too sore to type. My body was plagued by injury, increasing my levels of incapacitation until rising from bed was a painful luxury. My strength was fully depleted, drained by disuse of my muscles and overuse of insufficient coping mechanisms.

    It was a lot.

    I felt like I was losing myself to the illness. I was too broken, too faded, to continue on without changing into a person who can cope with more than a lot.

    I knew that it was possible to cope with more. I knew that limits placed on how many blows I believed I could take before breaking were all placed by my mind. Many times, I have watched helplessly as CRPS progressed through my body and in each instance, I have learnt to handle my new situation. Coping meant not accepting that there was a level of pain at which I could not cope. Even bedridden and unable to speak, I had to find a way to be OK so that I could always be ready to make the most of things if the pain abated enough to let me move.

    It’s funny how often people speak about wanting to “get back” to stages in their lives that felt safer, more secure, or less painful than their current situation. For a long time, I have wanted to get back to the person that I was before CRPS. I have wanted to get back to my old life, get back to my old dreams. It’s funny because returning the past is never an option. It’s funny because we grow every day. Even if the universe would allow it, getting back to a time that we lived through before would never be the same because we didn’t just live through it, we grew through it. We’re different now.

    I wonder how much human discontent is caused by the common desire to hoard? Be it objects, people, or those parts of ourselves that we cling to in a desperate effort to establish an unchanging identity.

    Society loves to preach that if we “be ourselves” then we will be happier, as though a self is a static thing, an ingrained truth, an unchangeable fact. Sometimes, I think that identity can be an invisible obstacle blocking the path to a happier existence. Everything is transient…everything…including us, our pain, what we think and feel, what we desire and despise, and how we perceive our places in our lives.

    As the months passed and the pain kept me silenced and still, I fought against accepting that, in all likelihood, I would never “get back to normal”. Not even the sort of normal in which I had previously functioned a little in spite of the pain.

    I had to let go of the desire to go back, so that I could let go of the agony. I had to watch my mind, my thoughts, notice their effects on my emotions and learn to let go of patterns that weren’t helpful. Really let go, not just try and hope that’s what I was doing.

    It’s not an easy thing to detach from one’s identity.

    I had attached a lot of aspects to this person that I thought I was. I was a partner, a daughter, a friend. I was a chronically ill person, a person with CRPS, a disabled person. I was friendly, upbeat and a little bit odd. I was a blogger, a writer, an avid social media over-sharer. I was unhappy with this hand that life dealt me, but attempting to be an inspired individual in spite of things that I couldn’t change.

    I was everything and nothing that I thought I was.

    I looked closer and closer at the ever-flowing river of thoughts that I call my mind. Whenever I started to feel uncomfortable, I looked for why, for the tiny creeks of beliefs, biases and perceptions that fed into that river, just upstream from the deep waters of pain. I realised how many of those were trenches that I had dug at some point, without even realising that the shovel was in my hands.

    My self was never a thing that was lost, or a prize to be found. My identity was a construct, a convolution of decisions, an illusion. My identity wasn’t a thing that I was, it was a thing that I was creating.

    I am not my thoughts, I am the thinker. I am not my beliefs, I am the believer.

    I needed to change into a person who can cope with more than a lot. Changing who I was wouldn’t actually change anything because the “who” of me was just an interpreted result. The thing that needed changing was the how of me. How did I want to be? How did I want to handle my life, with all of its challenges and blessings?

    I realised that I didn’t need to “get back” to anything that I was before. I needed to move forward into something new.

    I felt like a blank slate. Enter: the cocoon. I needed to separate myself from the feeds of online information and opinions that I’d spend hours getting lost in. I needed distance from friends and familiar routines. I needed separation from the influence of others so that I had space to start rebuilding my life out of the pieces that my last chapter smashed me into.

    Changing started with the little things…a breath, a thought, a decision. Changing continues…

    Completion is for craft projects, not people.

    I am peeking out at the world from the sheaths of silk that envelop my evolving self and for the first time in ages, I can see them again. The possibilities. They’re everywhere.

    Love & Motion,

    P.S. I am way, way out of touch with everything. Friends, news, memes…all of it. One does not simply check Facebook notifications when one is cocooning. I’m going to venture back into this whole communicating thing slowly. I look forward to knowing stuff about you again. Also, I have a lot to say.

  • More about me…
  • Follow me on Twitter
  • Like Rellacafa on Facebook
  • Subscribe on Youtube
  • Talking is for the Lucky People

    Dear Audy,

    Life is lonely without conversation.

    CRPS has been slowly crumbling my body since I was 24yo. With each progression, I found ways to pace out activities and push through the pain, while I still could.

    But there are limits to how much I can push through without making things worse. Limits that keep shrinking.

    I’m just trying to cope, it’s all that I ever do. I feel at fault for not healing, not winning. I feel like I must have The-Secret-ed myself into this painful life. I feel like I didn’t appreciate freedom and health enough when I had them.

    I feel like I should be able to improve things, to be mindful, let go and find happiness in just being alive. I feel like whenever I get to a place of acceptance or comfort, those physical limits go and drop a little lower.

    I feel hurt and abused by fate and bitter and guilty for not being able to keep that shit in check.

    My ability to communicate is now limited to mumbling a word or two and causing a drastic increase in pain, or briefly text typing. It’s the predictive text feature and smaller movements that mean this hurts less than keyboard typing.

    I figured that if I could text, then I could blog using the WordPress app, even if it’s just thought ramble, even if it’s short and pictureless and linkless and a different way of blogging than I’ve practised before.

    Text typing doesn’t not hurt though. I can barely remember what it’s like to do anything without having to physically suffer for it.

    Just typing on my phone.

    Just drinking a cup of tea.

    Just brushing my teeth.

    I can’t tell you how much I wish I were exaggerating, how much I wish that what I suffered from was the motivation problem that so many people who have never experienced my pain believe it to be….I fucking wish it was that easy.

    Every activity that I do begins with a stretching/Feldenkrais warm up and a lay-down-on-the-heatpack cool down. It takes hours.

    Every day, I try to move as much as possible and I try to relax in between activities and after I’ve done all that I can.

    My best never feels like enough.

    I do it anyway, because all I have is this faint hope that if I keep working at being a good little chronic pain exercise doer then eventually things will start to look up again.

    Maybe I’ll be able to drive again.

    Maybe I’ll be able to go for walks again.

    Maybe I’ll be able to cook dinner again.

    They aren’t big dreams for normal humans, but I can’t realistically hope to achieve anything higher on the dream staircase without passing over those steps first.

    I must climb on in silence, because I can’t fix what is wrong with my face. All I can do is hope. A hard knock to take, but there it is.

    Talking is for the lucky people.

    Love & Desperation,

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

    Dear Audy,

    Thank you for sending me such kind thoughts after my last post. I wish that I could react and respond like a strong person, but I am just a noodle with dried out edges.

    Writing by talking ruined me. My face just stopped working after that and decided to spend all of its time spasming, swelling and relocating its movable bits. Speaking is stupidly painful, both for me and for the listener because I sound like a toddler who hasn’t learnt real words yet. It’s like life was watching me summon all of my strength to simply communicate and so it cackled with power and then sent a bit of extra struggle my way.

    It has been almost a week since I last smiled, or made a facial expression that was not physically torturous. Wearing my glasses adds a layer of painful pressure, however not wearing them and attempting to look at things adds a layer of painful vision. Basically, just having eyes is hard for me right now, they hurt my jaw.

    I type this with my stinging fingers. An act of defiance against the silencing.

    An act of victory over the recent month of hands that wouldn’t move at all without blowing a little bit of my brain out of my ears.

    Typing hurts and I will pay and I will probably get angry and frustrated about the fact that I can’t even do this without severe consequences, but then I will rest and reframe my perspective and remember that I need this. I need to write.

    I need to make some sense out of my mind garbage and feel connected to the world.

    Occasionally, I can hold a pen and so I scribble in a journal. Mostly swear words and nonsensical rage, just to let off steam and get things out of me. I used to feel release from such venting, but now I wonder if ranting hinders me from letting go of things that I can’t change. It feels like using energy to reinforce negatives, rather than focusing on overcoming those nasty feelings that arise from dealing with this failing body.

    I no longer have the ability to write enough words to afford to waste them by going in rage circles.

    I prefer to write to you, Audy. Sometimes it’s because I want to be heard and sometimes it’s just because I need to express myself in a way that’s more than me alone in my head. Blogging forces me to try to explain with some sort of eloquence, rather than just ramping up my rage by repeating problems with a loop of profanities.

    I’m not just writing to you, I’m writing to me. Blogging is a way for me to step outside the bubble and tell myself some wily truths.

    Truths like that one, right there, about the rage ranting that doesn’t help me and the more thoughtfully constructed writing that does.

    And there we go, I do feel a little bit saner now.

    Love & Persistence,

  • More about me…
  • Follow me on Twitter
  • Like Rellacafa on Facebook
  • Subscribe on Youtube
  • When Everything Breaks Down

    Dear Audy,

    I have been dark for a long time.

    I couldn’t talk to you, I couldn’t even look at you.

    For the first 6 years of my illness the Internet was an amazing place where I could still interact with the world, but then I fell too far into the dark and the experience of being online changed. All of my experiences changed. Life was too much to deal with and I couldn’t think clearly anymore. I could hardly think at all. It was too much pain, too much loss and too entirely overwhelming for hope to glimmer through.

    When you were sad, I started to feel like the world was ending, as though everybody was as wretched and miserable as me and that just made me feel sadder. When you were happy, I felt a sense of separation from the world that stabbed like a dagger to the gut, I felt jealous and angry and disappointed, as though everybody had chances and choices that I could only ever watch.

    I have been stuck in a season of injury. A stumble here, a bump there and infections that take far too long to clear. My body stores these afflictions like trophies, keeping physical remnants of pain that are used to perpetually torment me and send me screaming into further incapacitation. When I can scream, that is.

    All of my physical capabilities were suddenly gone. The pain grew and expanded through more of me, increasing in severity through my knees and elbows, shoulders and face. I couldn’t walk, I couldn’t sit up, I couldn’t hold anything in my hands, I couldn’t read, I couldn’t write, I couldn’t talk, I couldn’t smile… And then I couldn’t walk again. As soon as one symptom abated in the slightest, another angrily rose to take its place. I felt so utterly defeated.

    Near the end of last year, I received my last income protection payment from the insurance company. I’d always held onto a sense of hope that by the time the money ran out, I’d have found some way to support myself. That maybe I’d be able to work again, or write, or study. I was so determined to not let chronic pain beat me that I’ve been living in denial about the reality of what I can and can’t overcome through sheer determination. I’ve failed to acknowledge just how much this disease has progressed since its beginning. It’s hard for me to recognise this without giving up. It’s hard to both accept reality and also keep trying to improve it.

    All of me is affected by CRPS, all of me. I can’t simply learn to do something with the other hand, or learn to do something around the use of crutches or a cane because I can’t use crutches or a cane like I could when CRPS was just in my lower limbs. I can’t even push myself in a wheelchair. When I can’t stand on my legs, I just can’t stand. When I can’t use my arms, I just can’t touch anything. When I can’t use my mouth, I just can’t communicate. When the pain soars beyond believable levels of intensity, there is no working through it, there is just survival.

    When the insurance money ran out, I lost another piece of me. I lost the ability to have any sort of independent choice, at all. I am not married, however, living with someone who loves me strips me of any rights to independent disability support. My increased incapacitation means that he doesn’t just have to support me financially, he has to do absolutely everything for me.

    Every part of my being is burden on the people that I love. I might not have asked to live like this, but that doesn’t mean that I don’t feel guilty and useless and like I should be able to offer somebody something in return.

    When I could no longer type, I lost another piece of me. A really big piece. I can only write to you now because my hands are finally allowing me to click a few times on the keyboard, which I need to be able to do in order to get around errors between myself and this dictation software. It’s not the same though, writing by talking is not the same as writing by writing. My words have always been my way of understanding things, my way of working through problems. Writing by talking might not be my way, but I have to believe that it can become so. It is a “way” after all, I have to believe that practise will help to make it “mine”.

    I have felt bound and gagged for so long that I started to forget who I am. I have been waiting desperately for these days to come, for these days that bring enough physical function for me to be able to try to practise this other way of writing. It was such a long wait that I wondered if I was even a writer anymore, if I had ever been one to begin with.

    Given enough time alone in her head, a girl can wonder about just about anything. I can’t trust most of the things that run through my mind because thoughts are the biggest and fattest of liars. If I pay too much attention to them, I end up spiralling further into depression. Instead, I must keep recognising thoughts as thoughts and not as facts. I must keep tricking my mind into focusing on other things, which can get rather complicated when I can’t move, can only feel pain and there really seem to be no “other things”.

    Every day that I could, I pushed myself through the motions of performing the physical and psychological pain rehabilitation techniques that I have learnt over the years. Most days, I was barely capable of anything, I’d have to settle for simply breathing calmly because no matter what, there is always breathing calmly. Breathe and let go, breathe and let go…

    Being able to function is dependent on faith. Sometimes, faith is also reliant on being able to function, as misguided as that may be. I had a lot of faith in the things that I used to be able to do before stumbling into this ridiculous rough patch of life cabbages. I could find happiness in a day if I was simply able to cook, or clean, or write, or exercise, or plan ways that I could use these abilities to improve my future existence. When all of those things fell apart, so did my faith that life would ever improve.

    The sensation of hope seeping away is like a smothering of the heart. I could recognise that I was suffocating, but I couldn’t figure out how to gasp again. The will to fight burns inside a person; passion, faith and motivation are things of fire. Where once my flames had flickered, I could only find dull glowing embers. I continue to take some solace in their light, embers are not ashes. If I continue to focus, I might yet feel that fire once more.

    I have been lost and I have been grieving, but I hope to find my way again. Where I am today is just where I am for now. Tomorrow could still be different.

    Love & Hiccups of Hope,

  • More about me…
  • Follow me on Twitter
  • Like Rellacafa on Facebook
  • Subscribe on Youtube
  • My Great Tasmanian Getaway Part 4: The Ghosts of Port Arthur

    Dear Audy,

    After time forced our holiday to come to an end, my Prince and I headed to the suburb north of Hobart where his job was. He went back to work and I proceeded to hang out around the hire house, like a boss. I read books, watched Supernatural (current addiction and fitting, because it means that I now know everything there is to know about ghosts), went for occasional strolls around the neighbourhood and played The Walking Dead game on my iPad. It was kind of nice to be stuck in a different house for a change, this one had a much better view than the one that I live in!

    We did have one more holidaying adventure in us though, Sunday found us heading down to Port Arthur for a little check-it-out and a ghost tour.

    Port Arthur Historical Site

    Port Arthur Historical Site

    My first ghost tour. I was pretty pumped.

    A ghost tour probably sounds a bit morbid if you are only aware that Port Arthur was the site of the horrific shooting massacre that shocked Australia in 1996. No, I wasn’t searching for those unfortunate souls. I was searching for the older souls that died there in the 1800s when the site was a convict prison and colony.

    It’s totally appropriate to search for those ghosts, they’re really old. Or something. I don’t know, actually. I don’t know when it becomes appropriate to be fascinated by horrific things that happened to real people. I mean, it’s not out of disrespect to anybody’s suffering, it’s just that the fact that such awful things ever happened at all is deeply disturbing and interesting and I think we’re supposed to learn from them. Or something.

    Moral questioning aside, Port Arthur is a fascinating place. Some of our ancestors did some pretty terrible things there. Not mine though, as far as I know, my own ancestors spent history doing terrible things in Italy and France.

    Port Arthur was where they would send the really bad criminals, you know, the ones who did worse stuff than steal food for their starving families, or who stole more stuff than that other guy. Convicts who had the gall to reoffend after having already been shipped to Australia for their original crimes were considered super bad and many of them ended up at Port Arthur too.

    Port Arthur Guard Tower

    Port Arthur Guard Tower

    Today's birds think the prison is actually a really cool place to live.

    Today’s birds think the prison is actually a really cool place to live.

    Port Arthur is located on the tip of an almost island (only a thin strip of land called a “neck” connects the almost island to the next piece of Tasmania) and the landscape there would have been pretty rough back in those days. Steep hills, thick bush and a bunch of scary little critters that would never have been seen before by convicts from the streets of England and Ireland, including those critters that people saw fit to name devils.

    The name is understandable, Tasmanian devils are pretty creepy. I mean, they do eat dead people, after all. Come to think of it, cows probably think humans are pretty creepy too. I tend to think that humans are a bit creepy sometimes and I’m not even a cow. I guess that “creepy” is relative. Maybe we were too harsh when naming Tasmanian devils after all…

    Most of the Port Arthur historical site has suffered fires at times. Some of it has been rebuilt and then burned down again and then the people gave up, which is fair enough. You can’t stop mother nature. The ruins don’t look much like how it would have looked when it was a functioning colony, however there are enough standing ruins to paint a pretty vivid picture. There are also some actual pictures mounted around the place, which are helpful for those lacking in imagination and those who just want to see whether or not they are good at guessing.

    It's a pretty bay and not a bad view for a living Hell.

    It’s a pretty bay and not a bad view for a living Hell.

    The Separate Prison is probably the most disturbing building on the site. That was where people decided that psychological punishment would be way more effective than physical punishment and they were just not all that far away from wrong on that. Prisoners being kept there were not allowed to communicate with anybody, in any way, at all. All they could do was their allotted work and the rest of their time was for thinking long and hard about what they did that landed them there. It was a very extreme time out, indeed. Even the church pews were individually enclosed, just to make sure the prisoners couldn’t get face time with the guy next to them and bond over church stuff.

    The chapel inside the Separate Prison.

    The chapel inside the Separate Prison.

    I’d never previously spent much time thinking out what life must have been like at Port Arthur, I was far too lazy to have ever read that copy of For The Term of His Natural Life that school gave me as a prize for something academically awesome that I did once. It’s not like I never tried, I just got bored. I was 14 and history was less interesting then. Maybe now I will read it, but no promises…it’s a long and longwinded book.

    My reading failures aside, the previously never considered thing that struck me was that convicts weren’t the only people who lived where convicts lived. Guards and official type people had to be there too and those people had families. Wives and children that needed to be protected and educated, maybe they even had pets. I can’t confirm that, I never did learn whether or not there were pets at Port Arthur. I hope for their sakes that there were. Dogs are the best.

    20130506 Port Arthur Private Residence

    Back to the topic at hand: Ghosts. Not only did regular, non-convict people live at Port Arthur but a fair chunk of them died there too. It was those people that I learnt a little something about during the evening Ghost Tour.

    I should probably mention that I don’t really believe in ghosts, but jeez, I would love to because wheeeee, exciting! I am even one of those people who has a pretty terrifying ouija board story from when I was a kid, but still…no. I enjoy letting that one go unexplained (Hi David, my ghost, if you’re still out there).

    Most ghost stories seem to involve a live human sensing something weird and then stories about a dead human filling in the blanks. I believe that energy is an amazing thing and that some things change energy and that those things and changes aren’t always in the realm of our comprehension. I believe that there are plenty of unexplainable things that happen in this universe we inhabit, but I just don’t think that one of the explanations is likely to be conscious ghosts. Why? Because their existence is illogical. A dead brain can’t, you know, remember things. You need synapses for that.

    Also, because being a ghost sounds like the worst fate ever.

    I mean, somebody lives a really cruel and harsh life and then they die and then they are just stuck hanging around on Earth? That sounds worse than Catholic Hell. You should totally be able to get away from stupid Earthly problems when you die, I think that’s the point of dying. When society changes the rules on what is acceptable behaviour, does that change who gets to just be dead and who is stuck being a ghost forever? Because forever is a really long time to be punished for something that seemed like a biggie 200 years ago but that you would just get a fine for today. What about the ghosts that were simply victims of murder or unfortunate accidents? An incorporeal eternity is a really big punishment for just getting killed.

    Our ghost tour guide was super convincing though, he really made me want to see one! Especially the ghost of the reverend who allegedly tried to choke a construction worker in his old house, long after his death. I wanted to meet that ghost, he sounded exciting. My Prince pointed out that being choked by invisible hands would be terrifying, but I am so brave that I had to shrug and say “That guy didn’t get dead, he just got a bit hurt and scared.” In all honesty, it sounded way more thrilling than terrifying. I’d be all: “I’m getting choked and there’s nothing there?! WTF? This is the best horror movie ever!”

    The ghost tour that we were taken on lead us through the church and parsonage, past the children’s infirmary (kid ghosts are the creepiest) and into a surgeon’s basement. A surgeon who may or may not have been doing strange experiments in there. Most of the stories told were about previous supernatural sightings, which I guess makes sense, although I was more expecting to be regaled with stories of horrific deaths rather than stories of strange lights in photographs. Whatever, it was all good fun.

    We ended up at the Separate Prison, where the guide shared his own story of a ghostly encounter with a tiny man that simply could not have existed in current reality. I was pretty jealous to say the least, I really wanted to meet a ghost by that point, it’s easy to get swept up in the magic of it all when you’re wandering around ruins in the dark. I’m quite certain that if I had a job telling ghost stories every night, then I’d end up fully believing in them too.

    20130506 Port Arthur Ghost Tour Lantern

    Port Arthur is too big of a place to visit all the ghosts in one evening. Sadly, we only had one evening to spend there but I’d love to go back there one day and take the tour through the old cell block, commandant’s house and court house, I have a feeling that the convict ghosts will be even more exciting than the reverend and the floating kids.

    I’d also like to take some of the daytime tours of the site in general. I could only handle a couple of hours of exploration all in all because of my dodgy CRPS legs. It’d be nice to stay nearby and soak up the history of Port Arthur over a couple of visits.

    As we were not staying nearby at all, my Prince and I got to play Dodge the Wildlife on the windy road back to the mainland. We narrowly missed wallabies, possums, an incredibly slow pademelon and most excitingly, a devil. It ran right across in front of us and was quite large by devil standards. I enjoyed this sighting immensely, it basically made up for the lack of ghosts earlier.

    And that, my friends, is the conclusion to my great Tasmanian getaway. As holidays go, this one was one of the awesomest. The rest of my time was spent much like the first paragraph in this post. We went for a very pretty drive up the east coast of Tassie on the way home (I flew home out of Launceston), but that adventure was mostly just super pretty for my eyes and not really an interesting story.

    Being home again has been a bit rough. Aside from the physical recovery needed after all of that adventuring, coming back to reality after an escape always kind of sucks. I’m trying to hang on to the holiday fun, however lovely memories never actually manage to solve the regular shit that has to be dealt with. I’ve been a bit unstable, but the plan is to try and work through that with some writing…

    Missed the earlier parts of my story? Catch up here:
    My Great Tasmanian Getaway: Part 1
    My Great Tasmanian Getaway Part 2: The South
    My Great Tasmanian Getaway Part 3: Bruny Island

    Love & Poltergeists,

  • More about me…
  • Follow me on Twitter
  • Like Rellacafa on Facebook
  • Subscribe on Youtube
  • My Great Tasmanian Getaway Part 3: Bruny Island

    Dear Audy,

    A few days after my ankle flare inducing adventures, I was ready for more. My ankle hadn’t exactly stopped bothering me, however I was feeling confident that I could handle the remaining pain and also, holidays don’t go forever just because you need more time to recover. Sometimes, it’s go adventuring now or miss out completely, so I employed a little bit of that desperation that I wrote about not too long ago.

    Kettering just happens to be the gateway to Bruny Island, we could actually see the ferry from our perfect little cottage. It would have been just plain silly to not have taken it at all during our time there and so, we drove aboard. Bruny Island turned out to be one of my most favourite adventures of the entire trip.

    Thumbs up for being on a boat!

    20130430 On a boat

    Bruny Island is magical. It’s one island, but it’s kind of two islands connected by a neck, which is a little bit like the conjoined twins of islands, which is delightfully rare and special because islands don’t have to deal with life threatening medical issues.

    The island isn’t really that big, however you can drive around and enjoy a heap of gorgeous and contrasting views of nature and the ocean. From idyllic bays to hazardous surf, plus some fun almost-four-wheel-driving tracks to follow and my most favourite discovery of all…wild quolls. More on those later.

    This blurry-thumbed-gorgeous-water picture is from the north west side of the island. North Bruny is smaller and less adventure-filled than South Bruny. We drove around in a loop along the dirt road closest to the coast line and vehemently envied all of the people that live there. There were farm houses there that basically had their own bays, beaches and cliffs, surrounded by their own paddocks and bush. Want.

    20130430 North Bruny Beach

    There are a lot of hiking opportunities on Bruny that I would love to be able to explore, however CRPS means that I have to choose when and where to use my steps carefully. So, I chose to use some at these stairs, which was difficult and painful, but so very satisfying.

    20130430 On The Neck Bruny

    That’s the neck between the two parts of the island behind me. I’d never seen anything quite like it. The right side was a quiet bay and the left side had these awesome crashing waves that made me want to dive right in despite the horrific consequences that I’m sure would have followed such a leap.

    Continuing south, we couldn’t help but stop and pick up some Bruny Island Fudge, which is probably one of the most amazing things that people have ever made out of sugar. Mmm, rare local fudge.

    The next stop was Adventure Bay, which is famous on account of Captain Cook landed there once. It’s one of the prettiest places that I’ve ever seen, I can see why he stopped. It had started raining when we got there, so we didn’t explore on foot, however we did pick up some lunch and then stopped to eat and were treated to this amazing view that just about made me lose my shit. I might have been channeling the internet famous double rainbow guy.

    20130430 Rainbow Adventure Bay

    Fuelled by coffee that was served in a greenhouse cafe (genius, it was freezing and greenhouses are lovely and warm) we continued our driving adventure for as long as we could in one day. You don’t exactly want to try to go too far or get too lost on an island as missing the last ferry back to the mainland means that you’re staying the night whether you planned to or not.

    We drove past some tiny and very old towns, then stopped in at Australia’s southern most winery and did not leave empty handed because delicious. A little bit of wine and all of a sudden my pain from being in the car all day was easier to tolerate. Magic!

    Our last intended destination was Cloudy Bay, which was special and spectacular. Rows and rows of breaking waves that looked like they’d just love to break a body in half, given a chance (some hardcore surfers that were camping nearby seemed happy to take that risk, oh, to have enough health to gamble with…*starry eyes*). Cloudy Bay also had a rich history of being a meeting place for several aboriginal tribes that once lived in the area. You know, before primitively ignorant white people showed up and did disgustingly awful things to them that I can’t talk about on account of it’s too horrifying.

    Here I am, doing the thumb hula at Cloudy Bay, which quickly became what I couldn’t help but do for most of our tourist pics. When you’re onto a good pose, you’re onto a good pose…plus, dancing is awesome. If you’re wondering about the pink jacket, well, I haven’t actually bought a water proof jacket since I was a teenager, so that explains that.

    20130430 Thumb Hula Cloudy Bay

    We went for an all wheel drive through the bush on our way back to the ferry. That’s kind of like four wheel driving, but not quite, but almost. The logging tracks took us through some amazing scenery that was further enhanced by the light drizzle. Forests just tend to look better in the rain.

    20130430 Forest Bruny

    I could happily spend a few days exploring and soaking in the wonders of Bruny Island, however we just had the one day with my noncooperative legs and I think we did pretty well to squeeze in as much as possible. I was exhausted, but thoroughly impressed with having survived all of that driving. The sun was setting when we arrived to wait for the last ferry back.

    20130430 Sunset Bruny

    That was when we saw them.

    The quolls.

    I thought quolls were almost extinct! But, they’re doing okay on Bruny Island. The first one that I saw was earlier in the day and it was roadkill. It took a lot to get my head around that and I had to immediately do some googling to find out how it was that this island paradise had enough quolls living on it that they were just jumping out in front of cars (mind you, all of the nocturnal wildlife jumps out in front of cars in Tassie, it’s best just to not drive anywhere at night). I was very pleased to learn that quolls are still living in a few places in Australia thanks to conservation efforts and oceans that keep foxes away. Go, conservation!

    We were waiting for the ferry at dusk, when all of a sudden, my prince started whispering violently and beckoning me to him. He had seen a quoll!

    I was so freaking jealous, I knew there was no way that little bloodsucker was going to reappear for my viewing pleasure. Slightly disappointed, I sat back down to finish drinking my deliciously potent Cheeky Rascal cider (it’s the best, you guys, this is the best cider), when I heard some rustling on the ocean bank. I stepped forward and got a nice big eyeful of a chocolate brown quoll with delightful spots who looked back at me and then disappeared into the brush. Thrilling!

    My prince wandered down the bank to see if he could get a look, at which point the quoll quite distinctively told him to fuck off. I know, I didn’t know they spoke people either, but if that quoll did not squawk-honk “Fuck off!” then I’ll eat your sombrero. I’m not sure how the phrase translates into Quollese, but that hard-assed little furball had the English down pat.

    Why do I care so much about quolls? Because I did a project on them in grade 3. Yep, that primary school stuff, it sticks with you. Basically, quolls are awesome because they look like this. Nawwwwwww….

    Click for image source.

    Click for image source.

    But they are little carnivores that will totally rip your throat out!

    Well, maybe not your throat, but definitely the throat of a smaller victim. Give them a break, they only weigh up to about 7 kilos, which is slightly less than my maltese shih tzu (I’m under no pretension, a quoll would kick his ass…just don’t tell him that). Quolls are like cute little attack cats. They can kill echidnas, with their bare hands and jaws. Could you kill an echidna with your bare hands and jaw? No, you’d take one bite of spikes and be done with that. You see, quolls are tougher than all of us.

    Plus, they’re spotty. Who doesn’t love an animal that’s spotty? I really feel like the noble quoll does not get enough respect amongst the other Australian animals. He is a marsupial too, Tasmanian Devils. He is cute too, Pademelons. He has a temper too, Koalas and Wombats. Sure, he also happens to live on a couple of islands that are not part of Australia, but he’s basically as Aussie as the rest of you and can’t we all just get along?

    Our Bruny Island adventure was one of the most exhausting but rewarding things that I did in Tasmania. It came with added thrills because, before I left home, I honestly wouldn’t have thought that I was capable of physically enduring so much in one day. Sure, I mostly just sat in a car, but even that is a challenge for people with chronic pain. I was a proud little adventurer.

    I have one more Caf Travels story to tell you before I’m done blogging about my Tasmanian getaway. It involves ghosts. Everybody loves ghosts, right? Good. I’ll be back soon with ghost stories and wonderings…


  • More about me…
  • Follow me on Twitter
  • Like Rellacafa on Facebook
  • Subscribe on Youtube
  • My Great Tasmanian Getaway Part 2: The South

    Dear Audy,

    Kettering is such a pretty, tiny town. It really just consists of a bay and some boats. I loved the quiet there and the remarkable view of the stars in the night sky. It was also a great location from which to head out and explore some of the stunning scenery that Tasmania has to offer.

    We went on a lot of driving adventures. My Prince was always behind the wheel, but I was impressed with how much being a passenger I could tolerate. Sometimes, CRPS makes even a short trip as a passenger incredibly painful, however all of these years of learning to manage my pain and associated anxieties really paid off on this trip. Plus, there was the removal of all of those other things that I mentioned in the previous post (those necessary to life tasks) that usually zap my strength before I get to the fun stuff.

    We drove around the countryside and the oceanside. Southern Tasmania has such beautiful landscapes to explore. We stopped regularly when we saw pretty things, or when our legs needed stretching. Clocks just aren’t necessary on holidays that are geared towards relaxation, it was far more rewarding to just amble around and find what we found.

    Things like this dried out wallaby carcass that looked suspiciously like a Tasmanian Tiger…I’m raising my eyebrow at you, extinction.

    20130427 Wallaby Carcass

    Things like these stunning bays and colourful rocks.

    20130427 Bay Posing

    20130427 Pretty Rocks

    Things like 200 year old churches and cemeteries (who doesn’t love an old cemetery?), hills and valleys that appeared to have marched straight off of a milk carton, birds that I’d never even seen before and towns like Cygnet, which has a 24 hour emergency butcher.

    20130427 Emergency Butcher

    There is probably a rational explanation for such a thing, but it just makes me picture drunk locals thumping on the door at 3am screaming “I need a steak NOW! It’s an emergency, dammit, my beer to steak ratio is all wrong!”

    Tasmania was a great place for me to holiday because, despite not being able to hike places like a healthy version of me would have loved doing, there was a lot that I could see without walking too far from the car. We drove down through the Huon valley, which is rather picturesque. Somewhere near the bottom, we adventured to the highest and lowest points of our trip.

    This view (achieved via car)…

    20130427 Highest View

    And this view (achieved via clutching rails and writing off the next day to ankle rehab)…

    20130427 Hastings Cave

    My ankle was totally done in at this point. The strangest thing about my adventure induced original site ankle flare was that it remained just in that original region. CRPS first struck me on the right side, from my toes to about midway up my calf. It’s easy to forget this because I generally have generalised pain accompanying everything these days, however there is a reason that CRPS has “regional” in it. The ankle gave me grief for the next couple of days, but I can’t help thinking that the fresh ocean air helped to keep it in its place. Usually, those flares last much longer and quickly mirror to the other leg and then up into my arms.

    My spirit for adventure was not going to be stopped by a stupid one region flare, no Sirree! My Prince and I needed to relax and rejuvenate and the next day we headed into Hobart and spent an afternoon at the only actual spa that we could find in the vicinity.

    Seriously, guys, a place where you get facials and massages is not a spa if there are no tubs of bubbly water there! Who approved this word appropriation? Because I disagree strongly. If facials count as a spa, then what am I supposed to called actual spas? Steaming wet pits? Those sound like the start of a deodorant commercial. Is it because “massage parlour” sounds sexy? Because if you are mainly going there to get massaged then that’s where you’re going, better get comfortable enough that you can handle a name with a history of use by under the radar prostitutes. Logically, they have more right to use “massage” than massage therapists have to use “spa”. Alternatively, I’ll help you out with a new start…you’re going to a pamper palace. Enjoy your pamper palaces and stop making it so difficult for me to find a tub of hot, aerated water. Seriously.

    Rants aside, the spa that we visited (Savoy Day Spa) was really quite delightful. It was located in the basement of an old bank in Hobart. We spent most of an afternoon rotating between the salt water pool, the actual spa spa, the steam room and the sauna. I could tolerate the steam room more than I would have expected to have been able to, but the dry sauna? Not so much. That’s a bit of an owie burn. The pool was my favourite part, bobbing around in salt water always seems to help put me back on a healing path.

    I need to get one of those pools in my backyard, anyone wanna spot me the thousands of dollars that would cost? Aww, come on…I’ll even consider indecent proposals, that is how much having my own salt water pool would help me manage my pain at home. Also, I just kind of want to hear how indecent you’re willing to get, for my own sick amusement…

    We were so in need of that relaxation that once we were spa-ed out, we basically floated out of the basement and back to the car. At which point, we proceeded to not even be able to find the right road back to Kettering and ended up on a not entirely unenjoyable windy drive that took us most of the way up Mt Wellington before we eventually figured out where we’d gone wrong. Sometimes, when the body releases tension, it lets go of a significant amount of brain power right along with it.

    My body started to behave better after I’d taken some time out to be nice to it. My ankle didn’t exactly leave me alone, but it did calm down. The next day was for being sleepy and listening to the rain on the cottage roof. After that, though, I was ready for another adventure, pain or not…

    Love & Adventures,

    P.S. I’m feeling quite a bit better than the shrivelled mess that I was yesterday. The evisceration has eased off and I can even stand up almost straight! More stretching, pacing and Feldenkrais today…I can bounce back quickly, I can!

  • More about me…
  • Follow me on Twitter
  • Like Rellacafa on Facebook
  • Subscribe on Youtube
  • My Great Tasmanian Getaway: Part 1

    Dear Audy,

    I’m back! Back from being whisked away for an escape from my dreary life. Back from a wonderful few weeks with my very own Prince Awesome. Back from the south, as far south as one can drive in Australia. Back from the delightful, wonderful and wild state that the rest of us have been unfairly mocking for years…Tasmania.

    This trip arrived just in time. I’m seeing life more clearly than I was at the start of this year and what I see from here is this: I was headed down the rocky road toward batshit crazy. I was absolutely losing it. The big it of sanity. I thought that I was hanging in there, but all I was doing was surviving, slowly, in a detached, confused and slightly deluded state. The delusion was that I thought I was still coping even the tiniest bit. I was not.

    The change of scenery was the most refreshing thing that I have experienced in the past six and a half years. It was my first real holiday since developing CRPS and, let’s face it, for a significant amount of time before that. I was awakened by the ocean breeze in my face, my hair, my everywhere. I was calmed by the wind in the gumtrees, the laughing kookaburras and bumble-brained-but-adorable wallabies.

    And, oh, the views. Nobody ever told me that everywhere in Tasmania has spectacular views! I guess that’s why none of the windows there have fly screens. Full disclosure: I did not visit every single part of Tasmania and will generalise freely with my view praise and fly screen wonderings.

    I was more than a bit nervous as I packed and prepared for my spontaneous holiday. I didn’t even remember to take a camera that wasn’t my phone. How would my body cope? Would it stop me from adventuring? Would my dogs be alright without me? (relax, I didn’t just leave them at home alone, but I thought they might not be okay without me, specifically) Why was I packing those jeans that none of my shoes match? Would I be able to sleep in beds that weren’t mine? And, terrifyingly, would the ants marching into my roof completely take over my home while I was gone?! (No, no, they wouldn’t).

    Only one of my silly worries was really valid and that’s the first one. How would my body cope? The answer is, pretty good, actually. The flight over was a bit tough on my hands, but only because they were burning horrendously for the few days beforehand. Luckily, it only takes an hour to fly to Tasmania and I can put up with almost anything for only an hour.

    I had some time to kill while my Prince finished up his work before Easter and managed to wander much further than I would have expected my legs to allow. Wandering was exhilarating after I had been feeling so trapped at home. I explored Rosny and even found a little museum to have a look at. One of the best things about Tasmania is that there is history hiding behind every turn and I happen to love old stuff. Story filled stuff is the best stuff.

    I figured that my legs would just give out on me after that, I mean, I climbed a pretty big hill to look out at this lookout.

    20130426 Rosny Lookout

    Thankfully, my body had much better plans. It decided to work with me, for once, and the pain remained tolerable for the drive down to the holiday cottage that we stayed in at Kettering. Once we were there, everything started to get better. I had basically forgotten how relaxing it is to relax in a place away from the stresses of home and normal routines, but it is extremely relaxing.

    Morning cups of coffee with this view were like living a fantasy. The ocean is just at the bottom of that very steep hill. Fresh sea breezes all day and all night are some sort of perfect medicine for a frazzled nervous system.

    20130426 View from Manuka

    My highly sensitised body found the climate in Tasmania particularly agreeable. The temperatures are generally a little bit cooler than Victoria, however they really don’t feel as cold as they are. Eleven degrees in Tasmania does not feel like eleven degrees in Melbourne. It’s far more pleasant down there. I raised this with one local who explained to me that it was “because they have more sky”. I hope that she wasn’t referring the their proximity to the hole in the ozone layer, because I love her explanation much more.

    The Tasmanian climate is better for me because they have more sky. I can totally get on board with that. I like sky.

    I also like local produce, which Tasmania has a lot of. I dare say that that’s because of the small ocean between them and the rest of our country, not to mention the rest of the world. One of the most fabulous things they produce there is wine, particularly Pinot Noir, which I am rather fond of. I might have had wine every day that I was there. I might be a slight alcoholic now, but I’m pretty sure I’m OK, it was good quality wine and that almost definitely makes a difference.

    Also, Tasmanians make some truly delightful whisky. The best one that we tried was called Three Capes. It was a new addition to the bar at the Port Arthur restaurant and appears to only be available for purchase direct from the distiller. I don’t think they have it in stores, it’s only just gone on the market at all. Thanks for that recommendation, waiter! Another great Tassie whisky that is more widely available is Hellyer’s Road. You should try some of that, provided that you like whisky, of course. If you don’t like whisky it’s probably just going to taste like burning and so we, as a society, shouldn’t waste any on you.

    It turns out that when I don’t have to do any cooking, or cleaning, or look after those amazing dogs of mine, or stress about the stresses of life and money and food and things…when I don’t have to do any of that then I am up for quite a bit of adventuring.

    So much adventuring, in fact, that I simply cannot fit it all into one blog post. Which is pretty great on account of that before this holiday, I hadn’t done much that I wanted to write about in a long time. Don’t worry, it’s all very exciting and involves quolls and ghosts (separately awesome beings) as well as a rant about the misappropriation of the word “spa”, so…stay tuned.

    Love & Escape,

    P.S. I started writing this on Monday. My physical state has plummeted since then and I currently feel like I’m being eviscerated with a wire coat hanger. Life, huh? Thankfully, most of the writing about my trip is already done, otherwise we’d be straight back into my crappy every day reality, in which I’m not really coping any better than I was before the holiday. Bothering to turn on the laptop and publish this right now is me forcing myself not to give up completely. I’m only sitting up right now through sheer determination, doing so hurts like crazy. I guess the point of this post script is to let you know not to be fooled by my smiling holiday pictures. Yes, I had a wonderful time. No, I am not magically better now.

  • More about me…
  • Follow me on Twitter
  • Like Rellacafa on Facebook
  • Subscribe on Youtube
  • What If Desperation Can Transform Into Temporary Strength?

    Dear Audy,

    The wedding…it was beautiful. I’m so thrilled for the stunning bride and her equally stunning groom. I wish them nothing but happiness in their lives together.

    My body…it survived. I threw away everything that day, all of the stress and cares and inabilities. I chucked the woes aside and I danced with my arms above my head. I put my hands in the air like I just didn’t care because of that fact that I did care. I cared very much about having the best time that I could and celebrating such a wonderful day.

    It’s hard to explain how I got through such a big event when, so often, I can hardly get through a day at home.

    I was watching The Walking Dead over breakfast this morning, as you do, when I realised a possible explanation for how I sometimes manage to physically push through an important event that just won’t be repeated.

    I was watching a character running for their life (no spoilers, I promise). Running through pain, stress and confusion. Running fast, propelled by the promise of imminent danger. People can do some pretty incredible things when they are threatened. That flight or fight response can create instant energy in a lethargic body. Our survival instinct understands that a threat is not going to wait until we are feeling well before attacking.

    Not the image that inspired this line of thinking, but you get the idea...

    Not the image that inspired this line of thinking, but you get the idea…

    What if that instinct, that power to flee, that fire to fight…what if that can be harnessed and used to overcome less life threatening obstacles? What if desperation, in different forms, can tap into the primal desperation for survival?

    I am no stranger to feeling desperate.

    These days, I am so desperate to enjoy any sort of event or activity that I won’t wear my sad face on such occasions. I’ve spent quite enough time at home feeling sick and sad over the past six and a bit years, I’ve learnt a thing or two about feeling pain without showing pain.

    Don’t be fooled because you remember my bearded performance as Lord Montague in that high school production of Romeo and Juliet, I’m an amazing actress. I have to be, I’m trying to fool myself and I’m a tough audience. You see, anytime that I’m not scrunching up my face, or falling to the floor, or sobbing hysterically, or making that absurd wailing sound that I’m fairly sure means that I’ll become a banshee when I die… anytime I’m not doing that I am acting, to some degree.

    Chronic pain doesn’t take breaks. Sure, it has an unpredictable ability to fluctuate in intensity, but it’s never gone. When I appear well, it’s usually because I am coping well, rather than actually feeling well. When we are having a good time together, you usually won’t see my pain until my body reaches the point of no-functiony-collapsy-exhaustion.

    My last blog post was on the topic of feeling empty. Maybe, the desperation to fill that emptiness with something, anything at all, maybe that helps to allow me to summon extra strength. It’s not a singular driving force. That particular sense of desperation is accompanied by the desperation to not miss out on all of life’s wonders due to CRPS and also by my constant desire to still be me, to still do things that are an expression of me as a person and a friend, not just a sick person.

    I’m still in here, somewhere.

    Perhaps, sometimes, overcoming is simply a matter of different streams of desperation, combining and combusting. The explosion lights up my darkened mind like a flare in the night sky, rejuvenates my strength like a sugar overdose in a toddler. Much like the toddler, I will collapse afterward. I will spend days, weeks, even months recovering from the physical ramifications of the emotional blast.

    Much like the person fleeing zombies, my body will give out the moment that I am safe. At the end of the party, at the end of the thing that I’ve wanted to enjoy, I will shut down, pain will skyrocket and probably there will be a flashing empty battery sign on my forehead. If I’ve had myself a soul replenishing good time, I usually wear this collapse with a slight smile of pride (provided that I’ve sustained no infectious zombie bites).

    And so, maybe, that is how I managed to have such a lovely weekend for my friend’s wedding, despite the fact that I’ve spent most of this year flailing about and struggling for breath. Aside from this one, magical, weekend, I’ve been feeling overwhelmingly useless. Coping with pain flaring has been more of a struggle than usual and coping with life stresses has seemed like an unobtainable illusion.

    Coping? What’s coping again?

    I want my mojo back and I’m going to have to trek some hard yards in order to get it. Such journeys always start with the smallest of steps, little itty bitty things that allow me to feel even the tiniest bit of control over my mind and body.

    I have to practise my relaxation techniques and increase the amount of time spent doing Feldenkrais and physical rehabilitation exercises. I have to try to reconnect with life, friends, my writing and figure out some goals that are achievable. I have to expose myself to information that is inspiring, read the work of writers that I enjoy, follow my interests and (most importantly for my daily sanity) filter my social media feeds and interactions to only include people and things that don’t leave me feeling negative or drained.

    How do you get through important events, Audy? What do you think about my theory of combusting desperation?

    Love & One of those itty bitty steps that I mentioned,

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