Keeping A Clear Head

January 27th, 2012 § 1 comment § permalink

Dear Audy,

It’s easy to make plans. Super easy. All you have to do is state what you’re going to do. Done! Plans. Keeping to them however…that can be a bit trickier.

For a long time, I have believed that I could be coping better with my pain management. This felt a little like a pipe dream, CRPS just seemed to have so much control over me. This year, the dream has finally been pulled from the pipe and is laid in front of me, gleaming with possibilities.

I have been flaring a lot, full body with an emphasis on hands and feet.

20120127-121544.jpg


Despite this, the only negative emotion that I have been dealing with is boredom. I haven’t felt like the pain is stealing my future and I haven’t felt like my world is going to end because I am forced into down time.

I’ve had to pull back from prorking too much this week (prork is productive work that is not actually work as it doesn’t involve getting paid. When it’s a good time, it’s funprorking). This has been alright with me as I spent the week before pouring myself into a writing project and I think I need some time to replenish my reserves.

Having completed a project during flare season is a huge achievement for me. Painbrain can be an enormous obstacle. I had to work around it, over it and through it, simply taking advantage of any helpful thoughts and moments of clearer thinking.

I found that adding something to the article every day, however small or deleted after a few minutes, was the best way to keep my head in the game. Some days I could write more than others, some days I hated every word to leave my hands, however I am pretty pleased with the finished product. Overcoming challenges to get it done is just a part of the process.

Challenges on this one have included prioritisation, which in this instance means that other personal administration and housework tasks have been pushed to the side for later processing.

I am taking it easy today, recovering from the sugar and alcohol of Australia Day and hanging out with all my onscreen buddies.

Sure, I wish that every little thing didn’t have to cause so much physical pain, but I’m also pleased as happy punch (punch has feelings too) that I’m not putting myself through the psychological blender instead of accepting things and getting on with what I can do.

It’s no less physically painful than before, but it’s plenty more peaceful here in this current part of my chronic pain journey.


I think I might just stay a while and sip a cup of tea.

Love & Coping Fairies,
Caf

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    • Finding Ways To Manage Challenging Days

    January 19th, 2012 § 3 comments § permalink

    Dear Audy,

    If you happened to tell me that my hands are actually some pork sausages that you’ve been frying up for brunch, I’d probably believe you.


    CRPS is doing what it loves to do in the second half of Summer – scorch me all the way through my nervous system. Air conditioning helps a lot, but time is really the only thing that can bring my body out of a flare this vicious.

    The symptoms are worst in my hands, however my feet and ankles aren’t very much further down the pain scale. I’ve so far managed to keep a level head; to be calm despite the raging war in my nervous system. Anger and frustration can’t do anything to help me with this.

    Sadness mills about, though, tugging at me with the things I’d planned to do today and have had to cancel on.

    When I felt the intense pain flow in with waking consciousness this morning, I knew that my plans for the day would need to be greatly altered. As I fumbled through making coffee, I resigned myself to doing the best that I could. The reality of living with chronic pain is that some days are just plain more incapacitating than others.

    It’s difficult to overcome such days, but not impossible.

    I feel bound when CRPS symptoms hijack me like this. Like an evil kidnapper tied me up and left me to suffer in an abandoned storage garage, removed from the world that I so revel in being a part of.

    Feeling helpless is a dreadful thing. So, I’m not doing that. This flare will pass and until it does, I can manage it.

    I’m composing this post on my iPhone, taking advantage of the touchscreen, only needing to use my thumbs rather than all my finger joints & the taps saved by predictive text. Smart phones really can be a smart way out of a pickle. I can now sync my Pages documents so that I can work on things in little chunks on days like today.

    This is a nice development. Thanks, Technology! I’ve never quite found a groove with voice recognition software, the channel that runs from my brain to my fingers always seems to have much clearer signal than the one going from my brain to my mouth.

    I’m slowed and I am sore, but I’m not stopping.


    Well, maybe I am stopping right now, but only for a rest as this still isn’t a pain free task. However, I can switch between rest & documents today by simply unlocking my phone and I’m hoping that allows me to still make some movement in my writing projects.

    It’s good to stay a bit connected, staves off total de-conditioning and that’s worth finding a work around to the painful obstructions.

    Love & Solutions,
    Caf

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    • Crashing Without Explosions

    January 16th, 2012 § 1 comment § permalink

    Dear Audy,

    I commenced my year of doing things this week.

    I’ve been working on a plan for an online support group with Chronic Pain Australia that I am very excited about. It’s at the out of my own head and into the arena of group ideas stage. This week I will begin creating content for the sessions and sorting out the technical aspects. I cannot tell you how it feels to be working on something other than managing my pain…it’s a me that I haven’t seen in years.

    I caught up with friends, drank at a bar during the day, visited a gallery, attended Spicks & Speck-tacular and went to the movies. That’s a pretty big week in my world.

    This is the year of re-conditioning. I am attempting to re-build myself and my life. My time is being divided with a bit more structure and I am focusing on the things that I need to get done, rather than whether or not I am up to doing them.

    The key is to try not to plan more than I can cope with without pushing my body into ruin. It’s not always possible, but sometimes it is and I am just trying to cultivate more of those times.

    I never expected this to be easy and gosh darn, it isn’t.

    Sunday has brought with it a flare of mammoth proportions. A big, hairy mammoth that has been swept up in a bushfire.

    Every joint aches and my flesh burns. I have also been wearing this blush (the real kind, not makeup) all over my body that gives me the appearance of someone who sat out in the sun for too long. This is new, this red me. Previously discolouration has limited itself to my hands and feet but…whatever, Body.

    I will just keep doing nice things to you until you decide to be nice back to me.


    Thankfully, Sunday counts as Sunday in my new perspective on the calendar (ingenious, I know). I don’t have to do things on Sundays. Except maybe lay in the sun, as the name suggests.

    Most of the day was spent on the couch. Air conditioning brought the pain down a little, however just getting up was enough to make me groan with the movement. I did manage to not be completely beaten into incapacitation by getting through some laundry and sweeping the floor. After which I collapsed back onto the couch and watched a movie. Still, I’m proud of the achievement.

    Gotta count all the little things. Doing so has prevented me from getting upset at this flare. It’s been a slow day but no big deal, hopefully I will wake up less sore tomorrow. It would be ignorant of me not to expect flare days being that I am well aware of the fact that I have CRPS, even when I am managing the symptoms well.

    And so I am still here. Sitting on the couch. With pretty hair and a pimple.



    And you get another self snap on this blog on account of I don’t have the energy to find a picture that poignantly illustrates the rambling point of this post.

    Which I guess is that bad days happen sometimes, they hurt a lot when your bad day is caused by an angry nervous system, but they do pass like all the other days. They aren’t super meaningful and they don’t have to make you cry, but they are there just the same.

    The lows are a part of us.


    It’s really quite nice that I’ve kept this confined to a physical low and not given into negative thinking. Not even when an old anxiety cycle about a slight problem with a household appliance tried to whir back up again…I actually just laughed at my brain when it did that.

    Oh, LIFE. Did it forcibly show you its power to go up and down this week? It does that. Don’t worry, tomorrow is on its way…

    Love & Carrying On,
    Caf

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    • Video! My Holiday In Under 7 Minutes…

    January 10th, 2012 § 10 comments § permalink

    Dear Audy,

    It was WONDERFUL!


    (pop out or view on youtube for full annotations)

    Did you get holidays? What did you do with them? I hope they were mega merry!!

    Love & Invigoration,
    Caf

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    • Off To A Good Start

    January 3rd, 2012 § 0 comments § permalink

    Dear Audy,

    It’s finally here! May 2012 bring you something beautiful, something relaxing, something hilarious and something surprising. May these gifts bring lessons and the learning bring contentment.

    I haven’t felt this positive about the beginning of a year in a long time.


    Happy.


    Holidays can be tough for those in chronic pain. A time of celebration for the past year and planning for the new one can all seem a bit overwhelming to those who aren’t able to follow their dreams and passions due to unreliable bodies. I am not immune to this, but I am getting better at dealing with it.

    I found myself needing to do a lot of thought patrols. Despite my best efforts there were a few moments of sadness, longing and regret. Chronic pain can invite a sense of disconnect from society and it can be hard to learn to not view this a reason to be upset.

    It isn’t a reason to be upset, though, it’s just some habitual thoughts. The sooner I replace them by thinking other things, the sooner their hold on me is released. Habit has a habit of pretending things are much more important than they are simply because they are repeated.

    This year, I am actually proud of what I achieved in the last 12 months. I have learnt enough about myself and my body that I feel equipped to continue managing my pain and improving no matter what new challenges life decides to throw at me.

    The holiday pangs disappeared quickly once January arrived. I have been enjoying my friends, my prince, some movies and my air conditioning. Not to mention, there is just so much to look forward to about the year ahead!

    Starting tomorrow, when I shall be heading off on my first holiday in too many years. It was a last minute decision, everything just sort of lined up for my prince and I.

    I feel so very lucky.


    I am looking forward to trees, beaches and the relaxation that only exists in worlds away from one’s home.

    When I return, I shall get stuck into working on things that will improve my life and keep me on the path to healing. I am actually looking forward to settling into a productive routine rather than allowing pain levels to dictate what I do.

    My motto as I launch into re-conditioning myself out of cripple mode shall be:

    There is always a workaround.


    I quite like boiling ideas down to mottos. I have a lot of them. Is that just a me thing? What are your mottoes?

    Love & Happy Days,
    Caf

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    • The Bathtub Bashing

    December 21st, 2011 § 12 comments § permalink

    Dear Audy,

    It was the strangest thing…

    I had a bit of an accident last night (I know, me? Accident? Shock! Horror!). I was getting out of the bath and I bashed my right knee on the spout. I did a pretty good job, it twisted this much past where it screws in to.



    The accident wasn’t the weird part, that came in the form of my reaction.

    I screamed, because OW.

    Then I just sat there on the side of the bath regaining my breath (because OW) and waiting for the blinding pain to subside a little.

    It only took a few moments to break into that throbbing/stabbing pain.

    I just sat there, watching it. Not reacting. I felt like Dexter, but without the dark passenger.

    It was the strangest thing.

    There are a lot of reasons why this incident would have severely upset a previous version of myself:

  • The bath is terribly designed (I was quite unwell during the planning process and did not notice this).

  • The bath was chipped by the builders and needs to be replaced anyway.

  • The spout has already been replaced once, it used to be about twice as long and twice as dangerous.

  • The room was clearly designed by somebody who never takes baths.

  • I take a lot of baths, they are extremely helpful to my pain management and it’s inconvenient to have a tub that is so difficult to navigate.

  • It’s a bathtub, I shouldn’t need special skills to use it.

  • The whack hurt a lot.

  • Like a lot, a lot.

  • The injury will probably take days to stop being really inconvenient and weeks to heal.

  • It’s nearly NYE and I’d prefer to rock out on my legs rather than my butt.

  • I was attacked by a freaking bathtub.

  • I never seem to go very long without inflicting some sort of injury upon myself.

  • The soak in the tub was nice and relaxing, it shouldn’t have ended in pain and swelling.

  • I had been planning on cooking dinner and walking my dogs after that bath.

  • The meat was already out of the freezer.

  • I was attacked by a freaking bathtub!

    • But, the strange thing? None of these existed as more than fleeting thoughts. I didn’t even have to concentrate not to follow them, they just sort of flowed away. I knew that getting upset wasn’t going to help the situation. Being grumpy never rewinds time and stops things happening.

    All being grumpy does is make the experience of life more difficult than it needs to be.

    I think that I have made some pretty outstanding progress toward my goal of not getting upset by things. I didn’t punch through any bricks, but I did come pretty close to bashing through metal. Or, it came pretty close to bashing through me, perhaps I should stop giving metal ideas…

    Having survived with my senses intact, I made myself comfy on the couch and iced the offending leg. I still didn’t get upset. I didn’t really get anything. I was quite indifferent and contented watching TV whilst paying little attention to the pain.

    It was the strangest thing.

    The knee bothered me for a lot of the night, however I knew that getting frustrated wasn’t going to help me sleep either. It’s OK to get less sleep sometimes. I’ve been awake since 5am and up since 6am.

    I am not even upset. I bumbled through my coffee making ritual and then sat down to ice the knee again and read through my Google Reader.

    It’s very sore, but what’s happened has happened, ya know? Can only deal with what is now. There’s no point whinging to myself or anybody else. Instead, I decided to tell you about this experience as it has felt so different to every similar injury that I’ve dealt with whilst living with CRPS.

    If feels better, easier.

    It is the strangest thing.

    Love & Breakthroughs,
    Caf

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    • Next Year Is Going To Be Pretty Awesome

    December 19th, 2011 § 8 comments § permalink

    Dear Audy,

    The year is winding up, Santa is nearly here and the people of Earth are taking their holiday stances as excited, indifferent or grinch.

    I haven’t done much about Christmas this year, haven’t even found the energy to put up the tree. I’m far more excited about January approaching than the day of feasts and presents on this particular cycle through the months.

    I feel like I am very much ready for a new year. I am finally settled in my new home. I don’t have to move in the next twelve months, a sense of security that I have not had in years. I can set up my things and make home comfortable enough that I can focus on other things.

    Plenty of other things! I have big plans for 2012.

    I am going to:

  • Stop taking daily meds and just use them for breakthrough pain (I’m down to just 2).

  • Further strengthen my body and enjoy the added benefit of effortless weight loss that comes along with a mostly paleo diet.

  • Get very involved with Chronic Pain Australia and enjoy having an actual job to do that can make a difference to people other than myself.

  • Write some marvellous things.

  • Sew some fabulous things.

  • Cook some delicious things.

  • Keep my head on straight.



    • Sounds pretty reasonable, yes?

    On the weekend, I got a birthday present, even though it wasn’t my birthday and I was at a party for somebody whose birthday it actually was. Yay! My present is this freaking adorable diary for next year. Thanks, Bob!



    It has STICKERS!

    And POCKETS!

    And LITTLE FACES to record one’s mood!

    I am going to use it to organise the productive side of my life, set myself deadlines and note how my CRPS is doing and how well I am coping. It is a very enlightening thing to keep a record of what I have actually done to combat my pain and then compare this to how much pain I am perceiving. Makes it a lot harder to sit around when perhaps moving or stretching would be a more beneficial use of time.

    Which is really what I should do now; these muggy mornings are more painful than the clear ones.

    What are you planning for the year ahead, Audy? And will you use a pretty diary to help you achieve it?

    Love & Patterned Pages,
    Caf

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    • Punching Through Bricks

    December 12th, 2011 § 1 comment § permalink

    Dear Audy,

    Do you know the secret to punching through bricks like a martial arts magician?

    You have to aim past the target.

    Or, you could try bashing through things head first, but I notice that she doesn’t stand up at the end!

    funny gifs
    (source)


    When you hit something with the intention of hitting something, you don’t actually hit it at full force. I guess some part of our intention knows that we’re stopping there and slows down. If you aim to impact behind the brick, you are more likely to hit through it with full velocity.

    What has this got to do with anything?

    Aim high, aim long and aim beyond anything you have ever imagined that you could achieve.


    This applies to everything.

    The brick that I have been trying to punch through lately is that of emotional attachment and subsequent upset.

    You see, we don’t actually need to get upset. About anything. It’s not a prerequisite for life as a human being. Sounds like a fantasy, right? It’s not, it’s just on the other side of that brick.

    As a person with chronic pain, a component of what I would like to not get upset about is physical pain. I am always in pain. If I were to accept pain as a valid source of emotional turmoil, then I sentence myself to always being upset. Sounds like a pretty silly thing to buy into, really.

    People in chronic pain stop expressing their discomfort in the same way as people with acute pain. They stop frowning all the time. They might even smile and laugh despite physical agony. To different degrees, we learn to manage around our pain and we learn to tolerate it in ways other than laying down and screaming.

    Of course, most of us still do lay down and scream occasionally. That’s the brick that I want to demolish.

    Setting the bottom line at “Nothing needs to cause upset” is actually a more liberating experience than one might think.

    Whenever I find myself shifting into negative emotions (fear, anger, sadness, frustration, longing…) I have to stop and admit to myself that the emotion is a product of my thoughts, it is within my power to not follow such thoughts through to feelings, and that to not acknowledge this truth is to practise denial that will only lead to further suffering.


    Sometimes, letting unhelpful thoughts slide by unattended can leave me with little else going through my mind at all. Killing the negative emotion can leave a period of feeling quite blank. This doesn’t worry me as it never lasts. The mind is a vast space of endless possibility, if left to its own devices, it will always keep producing thoughts.

    I have been dealing with an increase in pain and flaring over the last couple of weeks, which has provided me with a lot of opportunity to practise not getting upset about it. I am doing OK, I might have even made a crack in the brick.

    Without getting emotionally crushed and deflated (which was my old response to flares), I find that I am able to better recognise and utilise the little windows of opportunity for being able to push through and still be productive.

    I am also able to see more clearly when my mind is producing pain driven thoughts that are akin to the nonsense one sees during a bad fever. I am learning not to let this frustrate me, although I find that a disjointed painbrain can be extremely difficult to quiet. In these instances, I try to neither tame it nor allow it space to run free. Mostly, I just try to breathe evenly until a distraction takes hold, or the flare subsides and I can move forward.

    I am working on applying this sort of thinking in all areas of my life. There are so many little things that humans worry about and worry never helped a one of them. Sure, the worry might have eventually led to thinking that solved the problem, but imagine jumping straight to that point without the stress and tears…it’s possible.

    All problems eventually pass, whether we cry about them or not.

    In my experience, the ones that we don’t cry about tend to whiz by more swiftly.

    Managing my mind is absolutely the key to managing my physical pain down to a point that I can be a working member of society once more. Pain is unpredictable and hindering, however a clear mind makes it much easier to take advantage of the moments in which I can still do things that have seemed beyond my limits.

    Sometimes the bricks will shatter and sometimes I’ll sulk away with sore knuckles, but I am not going to stop throwing these punches until the success rate is 100% – a sky high goal that probably lies in the magical space, beyond the magical space, beyond what I am aiming for.

    Love & Determination,
    Caf

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    • Exciting Plans for 2012 & A New Dress

    December 9th, 2011 § 4 comments § permalink

    Dear Audy,

    Talkie time! Just a quick one about some exciting developments and a pretty new dress.



    Happy Friday to you, wherever you are!

    Love & Sunshine,
    Caf

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    • Flaring But Bearing It

    November 28th, 2011 § 12 comments § permalink

    Dear Audy,

    This week has been full of challenges! Mostly comprised of the complications of everyday life versus my nervous system.

    I have been plagued by pain and fatigue this week. I had expected a bit of a crash at some point thanks to all of the activity of moving house, however it held off for longer than I anticipated. Delayed reactions are really common for me. Maybe that’s why CRPS gets so angry, it’s grumpy that it didn’t notice my body being “attacked” and then overcompensates by stomping around a lot. All over my senses.

    Friday was the toughest. Burning went through the roof and I had one of those episodes where it’s really hard to breathe, let alone think or get a word out. These painic attacks (as is fitting to call them) have become less regular in recent months, but they still do happen. Usually when I am feeling particularly vague of mind and thinking a straight thought is difficult. It’s hard to keep a body calm when it feels like somebody poured glue all over the control panel.


    (source)


    The flare went down a bit overnight and I spent Saturday doing a lot of stretching, pottering around the house and resting on the couch. I felt a lot better by the end of the day.

    Disappointingly, the pain is back up to about an 8/10 (it’s Sunday morning as I type this). It’s a muggy day, I think that has a lot to do with my CRPS symptoms arching up. Most of the bother is in my hands, they are puffy, shiny and uncoordinated. They are also a purply kind of red and softly curling into fists when left unattended. Silly hands.

    Thankfully, I have gotten better at dealing with this level of pain. I’m not particularly stressed or upset, I don’t foresee any more painic attacks on the cards for the weekend. I’ll keep managing myself and my body will stop being such a hindrance soon. That’s the way these things usually work.

    Hopefully, I can learn to stave off those painic attacks altogether. Doing so is one of my rehabilitation goals.

    And so I am disappointed, thankful and hopeful. Those things don’t have to exist separately. Which is a pretty fabulous thing because disappointment is pretty awful without hope to churn up some motivation and move us forward.

    I have some plans to get out and be social this coming week, I do hope that I will be able to follow through with them. In the past, this situation has been stressful (What if I can’t go? What if I flare while I’m out? What if I drive there and can’t get home? …) however I am doing my best not to play the “what ifs” game.

    Instead, I am resting, focusing on pain management and doing everything I can to get my body fit and active. That’s all I can do in preparation for anything, really. If I do that and I still have to bail at the last minute, at least I can do so knowing that I’ve tried, it’s just that in some moments chronic pain takes things out of my direct control.

    No matter what happens, I don’t need to get upset. I probably will at times, but I don’t need to. It’s not the law of the universe that certain situations or levels of pain need to make me anxious or teary. Remembering that helps me to cope with a lot of the disappointments that CRPS throws in my face.

    Looking to the week ahead, I hope to regain control of my body and shaft this flare down to over-ville. I’d like the weather to play along, however I’ll do my best to manage around it. I really hope to make my play dates and make some progress in unpacking my sewing ‘n stuff room. Mostly, I just hope to stay calm and functional enough to go about my business. I think that’s pretty doable.

    Love & Deep Breaths,
    Caf

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