Tag Archives: Coping With Anxiety/Depression

Learning More from the Coping Techniques I’ve Learnt Before

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

* * * * *


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

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

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

I miss progression.

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

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

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

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

* * * * *


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

20150120 Choose to be Happy book


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

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

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

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

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


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

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

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

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


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

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

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

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

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

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

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

Love & Revision,
Caf

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  • Under the Shroud

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

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

    20141118 Under the Shroud


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

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

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

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

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

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

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

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

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

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

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

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

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

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

    I refuse to be smothered.

    Love & Focus,
    Caf

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  • 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

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  • 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

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  • The Confusing Art of Communicating a Life in Chronic Pain

    Dear Audy,

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

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

    Me, Instagramming a day of forced lying down.

    Me, Instagramming a day of forced lying down.



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

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

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


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

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

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

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

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

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

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

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

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

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

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

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

    Love & Pondering,
    Caf

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

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

    YOU CAN’T IGNORE ME, I’M FLUFFY.



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  • Finding Out Who My Real Friends Are

    Dear Audy,

    When I first developed CRPS and started interacting with the online chronic pain community, I remember one warning that was broadcast repeatedly from many patients who had been playing this pain game longer than me: “You’ll find out who your real friends are”.

    Click image for source.

    Click image for source.



    This seemed like a rather strange prediction. Would my friends not like me any more because I am sore? Because I can’t do all the things that I used to? Because I was suddenly about to sprout three heads that would incessantly mock everybody in singsong harmonies?

    What’s a “real” friend anyway? At the time, I hadn’t yet developed relationships with any personalities that I’d imagined and projected onto inanimate objects. Sure, friendships exist in different degrees, but I wouldn’t have labelled any of mine as “fake”. I mean, I wasn’t in high school, I think that the days of tribes of girls wanting to befriend me for my gorgeousness and popularity were already behind me.*

    And so, I journeyed forward through my chronic pain, preparing myself for the revelation of who my real friends were. I kind of just hoped that when they appeared under their halos, I would actually like them too. Obviously, I didn’t want to be friends with no losers. Or, you know, boring people.

    Nothing changed for a long time. My CRPS progressed, my incapacitation increased and I was forced to start wading in the murky waters of mental coping. I kept an eye on them, but none of my friends vanished unexpectedly. Of course, that doesn’t mean that some friends didn’t flow out of my life on the currents of change.

    Transient friendships always end that way. They were never meant to last forever.

    Friendships are formed through situations, interests, or any sort of activity that groups people together. Eventually, people get new jobs, or they move away, or they get interested in new things. Often when circumstances change, friends drift apart and float away into the next chapters of their lives. These endings don’t mean that the friendships weren’t real, they’re just a part of life in a world that’s always changing.

    The ending of a transient friendship can feel confusing if one friend is moving on and the other is stuck in place by illness. Shifting from living a regular life to a painfully restricted one is a tough adjustment. It can seem like the whole world is just passing by and feeling left behind can hurt like a bitch.

    It’s not just transient friendships that change. Friendships that span years and lifetimes are also changing along the way. Those deeper friendships exist because the friends have the ability to ride the changes together, to adapt to one another, to accept each other as growing, living beings. Old friends often find themselves distanced from one another and then really close and then distanced a little again. That’s how life goes. It can just be hard to see this when it feels like all of the good things happen to the friend that isn’t you.

    Navigating our own minds can be difficult. Sometimes, feelings are really big and it’s not always obvious why we’re feeling them. It can be easier to blame that friend that never visits for the fact that we feel lonely and sad, rather than accepting that the sadness is coming from how we are coping with our personal situation.

    Sometimes, sadness just needs to run its course, it’s no one’s fault.

    There are some friends that I kept in touch with for a while after developing CRPS, until our lives took us further apart. There are some friends that I simply never saw again. There are some friends that I catch up with rarely and there are some friends that I’ve remained close with. There are even a few new friends.

    At some point during the years that I have been learning to cope with CRPS, I have felt betrayed by each and every one of them. You see, there are a lot of things about chronic pain that can make a person angry and anger is always looking for someone to blame.

    When I felt isolated and cut off, I often felt angry at people for not visiting rather than angry at the disease for keeping me locked up. I felt angry that nobody was showing up to make me feel better. I felt like their absence meant that none of my friends really cared about me, or cared that I was hurting. I felt like nobody even wanted to understand me or what I was going through.

    I felt a lot of things that weren’t fair on anybody.

    I cried and I cried and I cried…

    It took me a long time to figure out that there wasn’t a bad guy. I felt so alone and I was stuck at home, surely the onus was on my friends to come to me? Maybe in a sitcom world, but not so much in this one.

    Because people have lives. People are busy and imperfect and are usually trying their best at life. Sometimes, people are overwhelmed when confronted by illness, or confused about what to say. Sometimes people stay home because they feel anxious or insecure. Most people have a whole lot of things going on that have absolutely nothing to do with the friends that they care about.

    And friends are people.

    Eventually, I became aware that I was spending a lot of time hating the people that I love for no valid reason at all. Nothing that has happened to me in terms of my illness has been their fault and maintaining my happiness is not their responsibility. I have different sorts of friendships with different people and it’s OK that they aren’t all the “bring roses to your sickbed” type of friendships. I mean, too many of those would make them a little bit less special now, wouldn’t it?

    I had to let go of needing other people to make me happy. I had to let go of wanting to be needed. I had to let go of craving approval, or inclusion, or whatever it was that I thought my friends should be providing for me. I had a lot of forced quiet time last year and once I was done raging about it, I used that time to observe my thoughts and disregard any that were not helping me to be a happier person.

    I decided to remove the obligation from what I understood friendship to be. I stopped paying attention to angry thoughts about other people and acknowledged that if I felt angry, it was coming from within. I refused to be annoyed at people for literally doing nothing. It was never their fault that I thought they should be doing something. I mean, what sort of queen did I think I was?

    I stopped creating expectations for friends that they were unaware of and focused on enjoying whatever aspects of a friendship were available to me.

    Life got a whole lot more enjoyable after that.

    Now, when I feel upset, it’s easier to figure out what I’m really upset about without a bunch of blame and anger blocking my view.

    It’s easier to spend a lot of time alone, now that I’m not blaming anybody for it. In fact, I think I quite enjoy having plenty of time to look after myself and reflect on things. It’s easier for me to recognise the friendships that were only ever going to be transient, whether my illness had happened or not. It’s also easier to recognise that all of the anger and hatred directed at my friends was only ever happening inside my head. It was only ever hurting me.

    Most delightfully, it’s easier to appreciate my friends, all of them. The long-lasting ones and the short-termers. The share-everything-with ones and the casual-joke-partners. The see-regularly ones and the only-catch-up-with-occasionally ones.

    I guess that CRPS has taught me who my “real” friends are, just not in the way that the warnings implied. All of my friends are real, there aren’t any mannequins in my contacts (sadly). Some of the friendships run deep and others barely scratch the surface and that’s OK. Some friends are utterly amazing at cheering me up when I’m down and others aren’t and that’s OK too.

    Some days I’ll get overwhelmed and angry and have to remind myself about these important realisations about friendship all over again. And that’s OK too.

    I guess the whole point is that nobody’s perfect.

    Love & Fluttering Cheek Kisses,
    Caf

    *Might never have happened.

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  • 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,
    Caf

    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.

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  • 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,
    Caf

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  • 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,
    Caf

    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.

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  • 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,
    Caf

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