Tag Archives: Pain Flare

But If You Turn It This Way And Look Into It…

Dear Audy,

Thank you all so much for the overwhelming response to my last post. Friends and strangers have been reaching out to me with such kindness. All I can see is hands.

Thank you. Yes, you.


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I’m not in a place to grab a hold of them yet, but I am gaining strength.


Click for source.


She chose down?! Too late now.

I got a little bit lost in the broken parts of myself. It’s so easy to get caught up in the labyrinth of my thoughts when I am feeling weak. I feel like I’m ambling forwards and backwards, instead of rising above the walls to see the bigger picture.


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If she’d o’ kept on going down that way, she’d o’ gone straight to that castle.

Distracted, I dreamed I was a different person. A dancing person, free from limitation and stress. I dreamed with the hope of youth and promise.

When the dream glass shattered, I crashed back down into the desolate place that I had briefly escaped. Oh, how sweet it was, the power of the poisoned peach. How blindingly bright, the power of the pretty lies.


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I have to save Toby.

I have to save myself. Always. White knights can only carry us from one place to another, never lift us from our inner torment. That’s something we must do ourselves.


Click for source.


Through dangers untold and hardships unnumbered…

I can open my mouth today. Smiling is still quite difficult but I’m no longer feeling like the man in the iron mask and that’s progress. Chewing is possible, but I’ll be sticking to soft foods for a little while yet.

Somehow, I’ve angered my left leg, so despite improvement in one area, I’m dealing with what feels like a new injury and setback. At least I think this situation is a bit funny, today. I mean, seriously? I enjoyed opening my mouth for about an hour last night before succumbing to my next affliction. That’s just too ludicrous to be upset at.

I need to have some fun. I’ve really forgotten how to enjoy everything. I’ve decided to take it easier on myself and be more aware of doing things that I actually want to do. I’ve often felt like I should get the necessary parts of life taken care of before I play, however the truth of now is that I can’t always get through those necessary parts, let alone past them.

And I can’t always love everything, but I can like things more than I have been.

I have fought my way here to this castle, beyond the Goblin City…

I’ve been pacing around a sewing project. Not walking in circles, but structuring my movement capabilities around it. It’s been so long that I wasn’t sure I even remembered what to do with fabric and thread. I’ve picked up a dress that I cut out two years (ish) ago and have decided to complete it. I don’t care how long it takes, I just want to enjoy doing it and not allow pain to stop me completely.

To take back the child that you have stolen.

I miss me. I miss me so much that somehow I’ve just kept behaving less and less like myself. I’ve created blame, catastrophised daily life and thus found myself drowning in the consequences of wayward thinking. I’ve been an emotional zombie, flailing about on the barely sparking patterns of a previous existence.

For my will is as strong as yours and my kingdom as great.

Light pierces through the depression that has hung about me for weeks. I recognise that it doesn’t have to be there, it doesn’t have to have control.

Shake off the negative thinking patterns.

Shake off the expectation.

Shake off the disappointment.

Shake off the should’s and have’s and would’s and could’s and can’t’s…

You have no power over me.

Ever since I exploded in blog form, I’ve been feeling naked. Writing that felt so raw, so revealing and parts of it still feel shameful. But I’m working on that. I’m even slightly ashamed that I don’t have the strength to respond personally to those that have responded personally to my writing. But I’m working on that.

And if you’re still reading, then I think that maybe you’ll forgive me.

I’m policing my mind with renewed vigour and relaxation. Because that’s not an oxymoron. Because l have to strengthen my methods of thinking positively and I can’t do that if I waste time and energy hating on myself when I fail.

Because thinking positively whilst hating myself is an oxymoron.

The depression lingers, lashing out, scratching at anything that might trigger sadness, pointing and screaming about the things that I’m directing my thoughts away from.

For now, I’m just looking at the moments one by one. By taking control of what I can (my reactions), I can shuffle along with less tears and build my steps toward strides.

YOU HAVE NO POWER OVER ME.

POWER OVER ME…

Power over me…

(power over me)


Love & What did you expect fairies to do?
Caf

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  • When Thinking Positively Fails, It’s OK To Take A Break

    Dear Audy,

    There can be a lot of burnout associated with making changes. I was bombarded with this over the weekend, as my pain flared off the charts and the weight of weeks without much respite cloaked my existence in a dark fog.

    I lost my ability to cope for a while there, I stared at the wall, I cried and sobbed, I felt defeated and so very small in the shadow of the challenges that I must face everyday. I could see my reasoning, that thing that I use to find healthier perspectives from which to live my life, I could see it and yet it just kind of wasn’t working properly.

    My reasoning was tired, that’s all. It’s been working overtime for months because my condition has been fluctuating so frequently that it’s taken a lot of work to keep myself thinking positively.

    It’s important to take breaks, and maybe just break, sometimes. That’s when our learning does its best work. The brain has an awful lot to do all of the time, when trying to make changes or learn something new it’s important to allow rest so that the information can be consolidated.

    This is why a problem can seem easier when left alone for a night and revisited the next morning. In not actively trying to force productive thought, we allow the brain time to figure stuff out on its own. It’s important to maintain a balance between practice and rest whenever we try to make changes.

    I’d been so focused on thinking positively, that it had been ages since I had really taken a break. Too long. And so my body forced me to, which was upsetting at the time but in retrospect, necessary.

    I feel stronger for having broken down. It’s like my stores of coping have been replenished. It’s easier not to follow negative thought patterns now, it’s easier to keep cultivating the healthy ones. It’s almost like my coping is a thing, an entity unto itself, a tired entity that has now had a nap.

    Poor, little, sleepy Coping.

    My symptoms have been particularly intense, despite my maintaining pain management tactics several times a day.

    The straw that breaks the camel’s back always looks like every one of the other straws, doesn’t it? Innocent, unassuming, until it brings that giant animal crashing onto the desert floor. Pain can be like that, when the coping runs out, pain can be very much like that.


    Pain can also play tricks with forgetful mind. When yesterday arrived, I’d had several days of intense full body pain. At some point during that haze, I crashed my left elbow into the frame of my pantry which caused me to drop and smash a kitchen plate. I grumbled, cleaned up and then promptly forgot that it ever happened. Consequently, my left arm catapulted into such an extreme flare that I could hardly stand to be attached to it.

    I thought it was just playing funny buggers. I’m so accustomed to symptoms that make no sense that I didn’t remember that I ever hurt this limb. Not until I was relaying the story of another smashed plate did I remember that there had been smashed arm as well.

    Sure enough, there is a bruise running along the outside of my left arm from above the elbow through most of the forearm. It’s not a particularly nasty bruise, however it is enough to set my CRPS into a panic.

    Hayley Cafarella, CRPS, RSD, Bruise, Rellacafa

    Barely visible bruise that set off mammoth CRPS flare.



    Mystery solved.

    I feel stronger this morning. It’s time to saddle up my Coping and take it for another ride. My left arm is still pretty excruciating, but it’s better than yesterday and every step forward counts. Thank goodness for dictation software, without which I might never blog these days!

    Thanks so much to everybody who has sent me messages of support and understanding. It’s amazing how much it can help to have someone simply say “yeah, that sucks” on a venty Facebook status. I find it particularly helpful because I’m so determined to think positively in spite of all setbacks, that I forget how necessary it is to take a break occasionally.

    It helps to have you tell me that it’s okay to break sometimes because I’m still learning how to not be too hard on myself.

    Love & Learning,
    Caf

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  • Pain, Logic & What Positive Thinking Really Is

    Dear Audy,

    I have felt so very lost lately. I have had a lot of adjusting to do, in most aspects of my daily life and well, that sort of adjusting takes up a lot of time and brainpower.

    Symptom wise, I am not doing particularly well. My ability to function has been declining severely with the shifting of the seasons. I’ve had increased CRPS pain all over my body, with the lower regions of my limbs being the worst affected areas. My hands and feet have been putting on colourful displays with more frequency than I have seen before. The flares aren’t really receding, just fluctuating about at different amounts of high-intensity.

    Here is my hand being pretty after I determinedly walked the dogs earlier. This picture is unedited:

    CRPS


    Centrally, my system is kind of flipping out. I’ve had an increase in general pain, specifically a burning/tingling sensation that seems to exist between my skin and my flesh. It’s everywhere, however it is notably more painful in my limbs than the rest of me. The sensation is particularly strong overnight and starts to rise immediately upon waking. Coping with it is a challenge that I must face every morning, sometimes several times a morning if it’s been a restless night.

    It’s not easy you guys, it’s really not, but I’m doing it.

    I don’t have a choice about the pain, but I can choose whether or not to cry and that’s a start. I can choose to keep training myself to not view physical pain is something that needs to upset me. This training, this militant monitoring of thoughts, is like exercising muscle. The more I practice the stronger I get. The stronger I get, the easier the practice. The easier I make the practice, the more I can progress towards healthier ways of thinking and perceiving.

    Logic can be a great motivator, It’s the hardest thing in the world to argue with.

    It’s really a good thing then I’ve been building up coping strength, because my nervous system is really ripping out the big guns this Spring… (I wish I was done describing symptoms)

    Along with the aforementioned joys of CRPS, I have been having a lot of trouble with my jaw. The left side has hacked away at its joint socket so much over the last few years that my jaw doesn’t really fit into my face on that side anymore. This isn’t a big deal, until you factor in that all of the other symptom increases tend to exacerbate jaw tension and clenching, which leads to an increase in neck and shoulder pain, which leads to an increase in arm pain, which brings us back around to the first paragraph of Caf’s exciting symptoms.

    So, um, there’s a nice little circle for you. It’s nice to notice things.

    Separate to the pain side of things, I found myself faced with increased sensitivity to everything. Everything. Temperature, light, sound, scent, pressure, chemicals, even people. My body does this thing now where it forgets to stop cooling down at night. I start to get sleepy and go to bed and then just get colder and colder and shiver uncontrollably (and painfully) unless I have an external source of warmth, like a heatpack. Good times.

    I react to all of the chemicals in everything. Food, cleaning products, hygiene products…everything. I keep getting nauseous and I’m not even sure what’s causing it; my diet is pretty clean these days. I even react to myself, apparently. I deduced this from the fact that the other day, having given up on deodorising at all, I still managed to score a new and exciting armpit rash. Good times.

    It’s not easy you guys, it’s really not, but I’m doing it.

    I’m coping.

    Most of the time.

    When all I can do is keep rearranging my thoughts to find a way that I can be okay with whatever’s going on, then that’s what I do. I have been trying ever so hard to resist the urge to vent and complain. I don’t want my brain practising those thought patterns. Every single time we go over something in our minds, we strengthen the thought patterns associated with that thing. I don’t want to strengthen the patterns that perceive my challenges as negative, powerful, or beyond my control.

    Everything that we think or perceive is only possible because of patterns created by our brains and nervous systems. Every single thing. Thankfully, through focus and practice, these patterns can be changed. Permanency is just an illusion when it comes to the natural state of the healthy human body.

    This is what positive thinking is: strengthening the thought patterns associated with not being upset.


    It’s not a magical thing that takes all of your bads and makes them goods. Positive thinking is a process of redirecting thoughts through observation and attention.

    In order to cope with everything that has been on my plate lately, I have had to remain acutely aware of what’s going on in my mind and whether it’s a thought pattern that is going to help or hinder me. This practice is especially important on both ends of my physical pain management strategies. I need to be able to get past any negative thinking patterns in order to get motivated to move through the pain and I also need to be able to keep my mind as peaceful as possible if I have exhausted all of my management strategies to no obvious benefit.

    Most of the time, stuff helps, but sometimes the sky has other plans for me.

    The actual sky, not the metaphorical kind. A lot of the challenges that I’ve been dealing with are the result of my body not coping with changes in weather.

    I need my mind to cope even though my body can’t. Positive thinking is as simple as that, really. I’ve read a lot of lamentations from people living with chronic pain who are tired of being told to think positively because doing so will not take away their physical pain. Maybe it will and maybe it won’t, but that’s really not what it’s about.

    Positive thinking is about coping, not cure. If I have to be in pain, then I’d rather be in pain and at peace than in pain and depressed.


    Logic can be a great motivator, It’s the hardest thing in the world to argue with.

    Love & Pressing On,
    Caf

     

     

    The Similarity Vs The Difference

    Dear Audy,

    Something very strange is happening. My CRPS symptoms are kind of flaring off the charts, but that’s not the strange part. The odd thing, the part that doesn’t fit, is that I really don’t seem to have an emotional attachment to today’s pain. I’m cool with it. It is what it is. Today’s pain. Not yesterday’s pain, not tomorrow’s pain, not this evening’s pain, just the pain of this day in this moment.

    And I’m going to be OK.

    I sat down to write a book review today, but my thoughts wouldn’t fit together. There are plenty of ideas floating around in my mind, it’s just that there are also plenty of misfiring nervous system patterns polluting my brain. I need my brain to run my mind and I’m having trouble connecting through all the white noise.

    I didn’t want to give up on writing though, so here I am, chatting to a Word document and curious to see what I have to say.


    (source)



    Sometimes, a disruption to thought processes can be a good thing. It allows us to look at things differently. Our brains simply make up most of what we perceive. It creates an illusion of continuity in our lives by remembering patterns from what our senses sense and using these to create perceptions from current sensations.

    In a way, our brains are lazy. They search for similarities that allow us to recognise objects, situations, people, etc., that we have come in contact with before. This is a pretty nifty survival tactic in the case that any of those things happens to be dangerous, or if we need to free up our awareness to notice other dangerous things.

    This is less of a nifty thing once we stop to consider that a similarity is not a reproduction. What differences do we miss in the sameness? How could they be important?

    Is the pain that I’m feeling today the same pain that I always feel thanks to CRPS? Well, it’s definitely very similar, I’ll give it that, but no. It’s not the same pain.

    There are plenty of differences that become apparent once I start to look for them. Today’s pain is being perceived on 16th August, 2012. I am 29 years old. I have spent almost 6 years living with CRPS and the colourful array of symptoms that it displays. I’ve learnt a lot. I’ve aged. I’ve changed. I’ve eaten different foods, done different amounts of exercise, moved to different homes, tried different therapies, connected with different people.

    I am not the same as the 25-year-old me with chronic pain, nor the 27-year-old me with chronic pain. Would it really make sense to say that I am experiencing the same pain, when we know that pain is a perception and perceptions are created in the brain? How can a different brain experience the same pain?

    What other differences are there?

    I am psychologically better equipped to deal with pain than younger version of myself. I have a stronger understanding of the connection between my mind and body than she did. I recognise that my beliefs influence my thoughts influence my behaviour influence my emotion influence my thoughts influence my beliefs influence my experience.

    These points of difference, these little details, make today’s pain different from any other pain. A different pain is a different monster. A monster that isn’t as strong as one that could imprison me in its claws for years on end. The differences are its weaknesses and can be exploited simply through observation.

    I see the cracks in its skin and that gives me strength. In all of their skin..the monsters…the little gremlins who have been messing about with my wiring. When I think of CRPS as multiple monsters, they appear in my mind as much much smaller then when picture CRPS as a singular beast. Weird? Perhaps. Useful? Absolutely.

    I’d rather fight off an army of ants than Godzilla.

    It’s common to think of chronic pain, chronic anxiety, or chronic depression as things that grab ahold of us and let us go with random repetition. But what if we think of each instance of these as being a separate thing? Each occurrence a new thing that we encounter as we journey through our lives. What if we greeted flares with curiosity and interest, rather than frustration and anger? What differences would we find?

    “The only man I know who behaves sensibly is my tailor; he takes my measurements anew each time he sees me. The rest go on with their old measurements expect me to fit them.” – George Bernard Shaw


    (featured quote from Counterclockwise by Ellen J Langer, which I still hope to review when my cogs start turning again)

    I am going to be my own tailor. I’m going to take fresh measurements before I fashion action plans. I’m going to look for the differences so that I am not blinded by the similarities. In words that pop culture might understand: I’m going to check myself before I wreck myself.

    By doing so, I hope to find myself less easily upset by painful flares and physical setbacks. Less upset gives me more headspace to actually work on what I can in order to improve my situation, even if that just means finding a better perspective whilst I wait out the flaring. An inquisitive mind has a much better chance at influencing a reduction in chronic pain than a defeated one. Who says healing isn’t a logical process?

    Love & Observation,
    Caf

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  • Surviving The Inflamed Burning Bonanza

    Dear Audy,

    My, oh my. I have been ridiculously sore for the past three days. Ridiculous even for somebody who lives with CRPS and is accustomed to chronic pain. It’s weird though, I haven’t gotten upset at all. I don’t even feel the need to add a “yet” to the end of that sentence.

    Perhaps I am still flying high on all of the lovely messages of support that I have received regarding my successful Sydney adventure… thanks so much for understanding how big of an achievement this was in my world!

    Perhaps I am still sliding low on the pain of recovering from such an adventure. But… I don’t think so, not entirely.

    By the end of last week, I was feeling much better. Much better than I’d felt at the start of the week and much better than I’d expected to feel a few days after being on an aeroplane. I felt capable of a little driving, grocery shopping and cooking, which are all great signposts on the way back from a flare. My hands were still giving me some visible grief, but no longer to a degree that I couldn’t work with.

    On Friday, I had a Scenar session that actually made me feel a lot better. I’d also had a Feldenkrais session that day and was feeling super connected and back on my way to physical functioning. The Scenar session brought down the pain in my hands, considerably. A couple, if not a few pain points down. It was great! I was able to function for the rest of the day and cook and feel wonderful.

    Saturday, however… Saturday was mean. I woke up in massive amounts of pain. Just…massive. Predominantly in my knees, then my hands, then my ankles, feet and elbows. My knees felt bizarre.

    I’m very aware of what inflamed knees feel like. When I was about 15yo, I had a kind of “bout” of chronic pain in the form of knee issues. My knee caps didn’t fit into their grooves properly and my feet were rolling all wrong when I walked and the result was a lot of pain and swelling. This issue was eventually resolved over about 12mths through wearing orthotics and various physical therapies.

    Did this prime my system for developing chronic pain later on? Maybe. Jury is still out on that one, but it theoretically makes sense to me…

    Anyhoo…knee pain and me, we’re old frenemies.

    This Saturday morning pain, this week, was like waking up with the ghost of those old knee issues. An angry ghost. A spiteful ghost. A ghost who has figured out that my system is primed for neuropathic pain now and mightn’t it just play with that a little while it’s in town…

    The result of this is a sensation that feels like I have gigantic, swollen knees. Like, the size of volleyballs, that’s how big they feel. Like, a hundred times the size of female beach volleyball player’s uniforms, that’s how big.

    It doesn’t feel like regular inflammation. It feels like burning inflammation. Hyper, hyper sensitive, burning inflammation. I can wiggle my fingers in the air around my knees and I swear I can feel them touching me. Touching me enough to hurt.

    “My knees are super heroes!” I exclaimed, to my Prince, last night, “This is a super power, right? The most useless super power ever, but…still…super.”

    Super, but kind of hard to stand on. This double whammy of a sensation that calls itself Inflamed Burning Bonanza is echoing in my ankles and those little joints in my feet. Also through my hands and elbows.

    Whilst I am still recovering from my trip, in some ways, I am also thinking that this sudden onset, weird sensation flaring is probably also being influenced by the Scenar. It almost feels like my body just decided to overreact this time, as though it’s tired of the Scenar messing with it and just needs to throw a tantrum.

    I don’t think this flare is a particularly good or bad sign, just a sign that things are happening and that my body currently interprets all change as an assault. I am still very hopeful that eventually my nervous system will recognise that Scenar is trying to help it and start to interpret the treatment in more helpful ways. After all, my system interpreted the treatment positively before reverting to its old habits, it can learn to do that for longer.

    In the meantime though, I feel a little weird and lost. I have things to work on and I’ve been doing that slowly. I can concentrate a bit, but it’s not easy at this pain level, which is still ridiculously high but not at the worst it has been in the last 72 hours. I still have my pain management techniques; I’ve been practising Feldenkrais, stretching and soaking a lot to get through this time. My methods are less effective than they are at some other times, but still help a little to keep me grounded, focused and reduce the pain a smidgen, for a few moments.

    This isn’t easy pain to manage, it bites my coping skills at every turn. I try not to bite back.

    I’ve been keeping calm, reading a lot and reminding myself that this is temporary. Inconvenient, but temporary. Incredibly painful, but temporary.

    I mustn’t forget, I used to be this incapacitated all of the time. Every day. For years. I’ve come a long way, I’m not about to give up yet.

    Love & Patience,
    Caf

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  • Everything Is Temporary

    Dear Audy,

    My world is vague and confusing these days, much more so than I am used to. Where to start? Where to go? Where am I, even? I really don’t know.

    It’s been several weeks since I began Scenar treatments. The experience has been rocky so far, however hopefully these setbacks are just necessary obstacles on the path to healing. The fact that my body is reacting is a good thing, even if those reactions are temporarily unpleasant. I have had some positive reactions and periods of pain reduction also, it’s not all bad.

    I am currently dealing with feeling like a total stranger in my body. There is a lot of twitching to contend with and pain flares seem unrelated to their usual triggers. I am twitching more the more tired or weak I become, which also brings more pain, but it’s rather hard to tell whether the pain is a side effect of the extra pulses zooming about my body from the Scenar, or a run on effect from the twitching itself. A side effect of a side effect, that would make perfect sense in my body.

    The hardest part of coping right now is the painbrain. I can hardly think at all. Concentration difficulties make everything difficult. It’s so much harder to manage things that I can’t quite understand or plan for. Right now, that’s basically everything.

    The strangest thing happened after my most recent treatment, last Friday. The aim of the session was to help settle some of the twitching and concentration problems. I had started to feel a bit better within minutes of the session and felt like I could think a little more clearly as the day progressed. I also had a reduction in the twitches.

    Despite enjoying the return of some thoughts, my mind still felt murky and as though the more I tried to concentrate, the less it was possible. Easy tasks, those were easier, but difficult things were seemingly far more difficult.

    As the days have passed I have come to the realisation that the murkiness in my mind actually seems to have a murky shape. It’s as though I have most of my brain there, as I would normally picture it, but there is a blackness masking a section on the left side, at the front. If you divided my brain into quadrants, then the quadrant behind my left eye would just be a black cloud. I don’t know what this represents, or means, or if it’s just my brain attempting to create perception in a confused state. All I know is that things feel different in there and for some reason this is the most obvious description that I can give.

    The pain has been on the rise since last night, despite my attempts to halt it’s growth yesterday. I am experiencing some CRPS symptoms that I don’t suffer from as regularly as I did in the early days. Much burning, regional joint pain, puffy skin, discolouration and increased sensitivity. These are the sort of flares that I had managed down to a minimum before commencing this new treatment.

    I just really hope that what’s going on here is some sort of rewind. Like, my nervous system doesn’t know how to heal and so it’s peeling back layer after layer of the malfunction that has plagued me since 2006. I went through plenty of discomfort when I first started Feldenkrais and as it’s all brain training, I have a lot of faith that this is what’s happening.

    It’s really hard to figure out what I am capable of right now. Many of the things that I regularly do to keep on track are impossible on more days than during my most recent recollection of normal. What I am now does not feel normal, even if it has been persisting for over a month.

    I can’t rely on my ability to cook at the moment, it’s a sporadically possible task. This is frustrating me more than anything because my health starts to dive when I can’t keep on top of my diet and end up eating “sometimes” food more times than some. It’s a downward spiral. Before this recent spat of flaring, I could plan meals for the week and generally get through preparing most of them. Currently, I’m lucky to get through cooking on one day and be able to repeat such a feat within the week. I really miss the control that I had built up, all I can do now is what I can do, when I can do it. It’s kind of hard to make plans of any kind when in this position.

    I have been terrible at communicating of late. It’s hard to communicate what I don’t quite understand yet. I don’t know how Scenar will play out for me, I don’t know how many dips there will be, I don’t know whether the outcome will be as positive as I’m hoping for. It’s a lot of stuff not to know and I just have to keep hoping.

    Just have to manage the condition that I find myself in each day and keep hoping.

    I miss being able to make plans and socialise. I had built up a lot of tactics for getting out and about despite CRPS, but those tactics only work when I am at a minimum level of functioning and that minimum level is way above my current one.

    I miss being able to work on things that help me to feel productive and projects that I’d love to have running for Chronic Pain Australia that I simply haven’t been able to do. It’s hard not to feel like a failure, so I have to just keep reminding myself that everything is temporary and that I will recover from this.

    Sometimes these symptoms feel like a hangover, in the sense that I did this too myself (agreed to try Scenar) and must bear the pain without complaint. This is a bit irrational, would I prefer to not try the treatment that might temporarily hurt but could potentially give me a future with far less pain? No. I don’t think I would. It’s just really hard to process thoughts right now.

    This is a rough patch, this Winter, but it will lead to Spring. I am not very well right now, but I will be. I might even be better than I was before and that’s the light that I try to keep in focus when things get particularly tough. Everything is temporary.

    Love & Patience,
    Caf

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  • The Battle At Dawn

    Dear Audy,

    I wake up. It’s early, it’s so bloody early. I can feel each part of my body that is resting on the mattress beneath me. Every point of pressure. Each creating a bruise-like feeling that seeps through my bones and pools in my joints.

    I roll over. I test the other side. I try to get comfortable, wiggling a little bit this way and that, hoping not to wake the man sleeping beside me. The grass is not greener here. The joints on the other side were just waiting for their turn to scream. I feel a little bit tricked and with a silent sigh I flip myself back to where I started.

    I breathe into the areas of pain, trying to release them. The anxiety patterns that live in those wee hours of the morning rev their motors, kick starting off my unwanted consciousness. I let them go. Again and again I will them out of my head, setting them free into the crisp night air.

    I am bleary yet aware that any thoughts hassling me aren’t really real at all. It’s just the pain talking, chattering on in that irritating way that it does.

    Eventually I am too sore to stay any longer. I must get up and move. Getting up is difficult with so much pain weighing me down. The room spins a little as my head adjusts to its upright position. I won’t be up for long, but I know that a little bit of movement and a situation change might help me settle back in for a few more hours sleep.

    Thirty minutes later I’m snuggling back under the doona. Morning light is starting to filter through the sides of my bedroom blinds, it might be too late to dream anymore tonight. I breathe deeply and rather than trying to sleep, I focus on relaxing and releasing. It’s not long before his alarm is playing its wake up tune.

    I lay there for a couple more hours, rolling from side to side and cuddling the little fluffy dog that has snuggled in beside me. He always knows when my pain is high and comforts me as only little fluffy dogs can.

    When I finally make it out of bed, the world seems hard and made of sharp edges. My body is heavy and difficult to coordinate. My joints creak and I long for some drops from the Tin Man’s oil can.

    Whatever shall I do with today? How do I beat this pain? How do I manage it enough to merely cope?


    My only answer is to persist. “Persist!” I tell myself, again and again, “Breathe deeply, check your body for pain responses, let the tension go. Take the day slowly, it doesn’t matter if you aren’t able to achieve anything other then surviving.”


    (source)


    So now, midday is here and so am I, still being my sore old self. Sometimes I tire of the daily battle to live with chronic pain. People regularly tell me that they couldn’t live with my condition; the physical pain, the mental fog, the boredom, the isolation, the uncertainty.

    I think that we learn to cope with whatever we have to. Adapt or suffer. Adapt or break. I don’t want to be emotionally broken again, even though I can’t help being physically broken. I go forward because I have no other choice.

    It’s not a superpower, it’s just living.

    Dealing with an unexpectedly intense day of CRPS symptoms is never easy, but it does get easier than it is at the beginning. I’m not a religious person, but I do have faith in the future. The future can do anything. I hope for better days ahead and sometimes just that hoping is enough to make the present feel less bad.

    I have been dealing with a sneezy bug since Friday. Unfortunately, I wasn’t able to go out and celebrate any birthdays on the weekend. Admittedly, it felt like a rough blow to be imprisoned by a microbial misfit after having spent the entire week preparing my body to handle some party fun. Life just doesn’t always line up. Life is the ultimate practical jokester, forever throwing challenges our way with no concern as to whether or not we feel like fighting through them.

    Today, my fight is a slow and steady struggle, but no matter how wrought with troubles, it continues…

    How do you cope with those mornings that seem ten times more painful than all the rest?


    Love & Survival,
    Caf

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  • Video: Summer Flares & Getting Past Them

    Dear Audy,

    It’s talkie time! In this video I am chatting about how Summer effects my chronic pain, what helps make it better and what doesn’t, and also what happens now that it’s Autumn…

    Enjoy!



    Do you have chronic pain? What weather conditions are hardest for you to bear?

    Love & Falling Leaves,
    Caf

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  • Weekend Reset

    Dear Audy,

    The weekend is the perfect time for a reset.


    (source)


    I have been struggling to deal with these excessively painful days. Sometimes it amazes me that changes in my pain levels and mobility can feel like new assaults and challenges. CRPS is unpredictable by nature, yet there is some part of my mind that is always looking to predict, to plot and to plan.

    To some degree, we all have to be planning ahead in this modern society of ours. There are obligations that come with living. Forms to be filled out, finances to organise and groceries to buy.

    Living with chronic pain requires extra planning from a person, despite and because of the fact that capabilities fluctuate to ever changing rhythms. We have to be ready for any scenario. It isn’t enough to always plan only the easiest options, it’s only when we strive for greater goals that we make progress.

    Not being able to do something all the time is no reason to miss out on the opportunities that we do have to perform the task in question. Whether that task be a chore, a craft, a walk, a song…

    The very best thing about fluctuating incapacitation is that it has to improve at times, otherwise it would simply be regular incapacitation.


    Plenty of people with CRPS and other chronic pain conditions do suffer from non-fluctuating incapacitation, I count myself very lucky that this is not the case for me.

    For the past couple of weeks, my CRPS symptoms have been gaining strength and taking over my ability to move and think. I am going to have to reset my daily expectations in order to manage the pain, not get upset and be ready to go again when the symptoms eventually back off.

    I need to take my mindset back to the flarey days of the past. I need to devote more time to Feldenkrais and meditation; techniques that I tend to get slack with when things are going well. I need to find safe ways to keep moving and spend more time soaking in Epsom salts. I need to keep my mind in the present, not worry about the future, refrain from lamenting the past and just plain deal with what is, right now.

    When Monday comes, I need to make some appointments. It’s time to get a little hands on help with keeping myself on track.

    I’m not planning a total reset; I’m not computerised, no matter how much I wish I was and could reboot this malfunctioning nervous system! I’m just changing my focus from pain management + reaching for creative productivity, to pain management + self/home management.

    Plenty of time to reach for productivity later.

    Love & Plans,
    Caf

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