People with chronic pain tend to have mixed feelings about events that aim to raise funds or awareness through some sort of group physical activity. Some people love that any raising is going on at all, others are forlorn that they are physically incapable of participating. I think that both of these viewpoints are perfectly valid. What I found interesting about this announcement of The University of South Australia’s Ride For Pain event was this quote:
“The first time I rode up Corkscrew Road I thought, there are so many metaphors here. You’ve got to be patient, you can’t go too hard, you’ve got to be courageous … all the things I required to get up that hill were what people with chronic pain require on a longer, tougher basis. Chronic pain is often still seen as socially unacceptable, with the topic swept under the carpet in much the same way as depression was, until recently. We shouldn’t be looking at people with chronic pain as malingerers and fragile; we should be looking at them as tough and courageous and with potential to get better.” – Lorimer Mosely
I can kind of see the genius in creating an opportunity for others to metaphorically (and a little bit physically) experience our pain as a method of creating awareness of such an unimaginable state of being.
There are plenty of self help articles out there on the net, I loved this one because it’s written with this in mind:
“Your identity is not locked to the past, to your parent’s expectations or demands, to your past failures, to your current view of yourself. Your identity is something that you can create every single day. Once you realize that, your self-confidence will begin to ignite.” – Barrie Davenport, Pick The Brain
Those who have been following this blog for a while will know that I trialled a Paleo diet back in September last year and I haven’t looked back since. It’s the most satisfying approach to human diet that my logical mind has ever encountered. There are a few aspects of eating that are hard to get one’s head around as the knowledge flies in the face of conventional wisdom. This case study explores what can happen when people drastically cut the amount they eat and simultaneously increase the amount they exercise, and also why so many who use this method end up burning out.
Maria is one of my favourite bloggers, her determination has inspired so much of mine in learning to cope with CRPS. I can relate a lot to this post, I too have been guilty of trying so hard to be perfect at everything that it was paralysing my ability to take on new challenges and lessons. Learning to let go of “shoulds” was a huge breakthrough for me.
This article is fascinating, I had never really thought about stigma about mental illness differing so much depending on the particulars. I mean, it absolutely makes sense, it had just never occurred to me before.
I’ve made some pretty big strides towards coping with my mediocre thinking powers in the past twelve months. I am trying to keep focusing on the achievements so that my current situation doesn’t drive me into nuttykookooville. One accomplishment, that has led to many more lessons and revelations, is my return to reading.
My pile of books to read…some for learning and some just for fun!
When thinking gets hard, I feel more disconnected than when dealing with only the isolation. Engaging with books is more challenging than usual and even the talking heads on the television are harder to follow. I also tend to catch myself spending ridiculous amounts of time staring into plain air and ferociously thinking about nothing at all.
Reading was a joy that was completely lost to me during my first couple of years with CRPS. During that time I was trialling a lot of mind sucking medication and trying to cope with the crazy turn that my life had taken, which pretty much filled up all of my time.
In order to be able to read (and learn) again, I had to lower my expectations of myself. I am no longer that nine year old girl who could get lost in books all day without a care in the world. However, I did start reading the sorts of things she would have liked…
Like Twilight. Yep, I read them all (I’m also not likely to forget this fact as it was an important step in this journey back to books).The best thing about reading The Twilight Saga is that it really doesn’t matter if your brain checks out for a page or two.
I wanted more than Twilight though, I wanted to read interesting things and to absorb and understand them. Getting to that point took a little bit more work.
I had to take my reading level backward before it could go forward again. I had to not get annoyed or frustrated when my brain checked out for a bit, I just had to go back to what I remembered and read it again. When coming across a word that I couldn’t quite remember the meaning of, I simply had to stop and look it up.
In the beginning of learning to read with chronic pain, I had to treat text as though I needed to memorise it for a test. Overly attending to the words was the only way to make any of them stick. I also practised expanding how I visualise what I’m reading so that there are further associations to strengthen the memories.
Thankfully, this was a task that time and effort could improve. I have read a lot since those early days, some books slowly, others all at once. Some books scientifically orientated, some books fictionally orientated. Some books that I have enjoyed and some that I haven’t made it all the way through due to boringness.
I am a reader again. It takes more effort than it used to but, hey, that’s OK. My current read is undertaken with a grey lead in hand so that I can deface the book with underlining and notes to keep my head in the game (unfortunately it’s not a library book, defacing one of those is way more fun).
When I look back to being that girl that was crippled by pain (pain that was, notably, not anywhere near as widespread as it is now), who couldn’t read, couldn’t learn and couldn’t understand what on Earth to do with her pain or her life, I am proud of how far I have come.
Taking some time out of this aching day to remember that makes me smile. My life might not be very exciting right now, but I’m still learning and developing. I’m still living.
Even though the pain has been phenomenal, I am actually coping better with late Summer than I have in previous years. I can recognise that these flares are seasonal, they come around every year with the humidity and they will recede into Autumn.
I’ve been concentrating on the physical so much that my mind has felt like it’s straying off in all directions. I haven’t been up for much writing or communicating (look, I’m not even convinced this post makes sense, but I’m giving it a go). Real changes do take a lot of effort. I have noticed lately that I’m just not thinking all that much. I am purposefully expelling negative thoughts but kind of not focusing on other thoughts either.
It’s fairly easy to stop focusing on thoughts that only lead me down rambling roads, through crazy tangents filled with random associations and usually end in a pool of WTF.
Lion face, RARR!
If the thought isn’t about how I can best handle and lower my pain, or feel happier in a moment, then out the window it goes.
My brain feels kind of muddled, which I guess is not surprising, considering how much time I have been devoting to Feldenkrais and messing with the patterns in my nervous system. It’s all connected. It feels a bit like I ripped up my brain and threw the pieces in the air and now I am just waiting for them to reassemble as they settle back into more helpfully organised working order.
Motivating myself to spend hours doing Feldenkrais actually gets more difficult when I’m doing well. I spend so much of my time feeling unwell, that feeling well makes me want to run out into the sunshine and sing at whatever I can find (flowers, birds, park goers…you’ve seen Enchanted, right?).
It can be a surprise to realise that I’ve modified my pain management efforts as things have gotten easier to manage. I was doing a lot of freestyle stretching and movement, however that is not as effective as a disciplined Feldenkrais session.
Each day, I choose a Feldenkrais ATM (Awareness Through Movement) track from my collection. I work my way through that and then through further tracks if I feel it necessary. Feldenkrais is all about listening to your body and learning to be your own guide.
I had been so out of practise that I had forgotten how helpful these sessions can be. It’s like massaging the nervous system and the relaxation and pain relief seem to have little to do with the actual movements of the session.
Trying to marry the thoughts of working with the brain via movement is a vast task. Just when I think I’m ready to kiss the bride, an old habit will sneak back in, an old pattern that I then need to unlearn again. This past week, the lesson that I have been focusing on is that I will always feel better after a Feldenkrais session (provided that I keep the movements small and easy).
I will also feel better after this down time from thinking creatively. Well, that’s not exactly it…my rambling tangents in which characters, actors and cartoons mix for wild adventures with household appliances are plenty creative, it’s just not that useful to me when I don’t have the presence of mind to moderate it. With my moderator just throwing things out instead of providing them with meaning or deconstructing the nuttiness, I kind of feel like I’m on a bit of a trip. It’s not quite ketamine, but it’s not quite a usual state of consciousness either.
I am keeping calm, I am taking pride in each small action and I am working through areas of pain, one at a time. I definitely miss being able to think, however I am extremely confident that once my body settles, my mind will return… and it might even be working better than before!
“That’s all, folks” – Caf’s Tuesday Brain
Love & Images of Lucy Hale ninja fighting Freddy Krueger (just stop it, brain),
Caf
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.
It seems that whenever I make a breakthrough in coping with CRPS, it finds a way to flare even more intensely and raise the challenge another few bars.
I’ve been doing decently (far from perfectly) at not being upset by pain and setbacks. It’s been a couple of weeks of Summer flares but I’ve been pushing on and through to keep my sanity in tact. My coping has been showing a few cracks in recent days, but I think I’ve mushed my brain back into some sort of functioning mass.
I’ve been dealing with an increase in CRPS symptoms, including more of me being effected by severe burning sensations and joint pain running rampant in all the joints. Late Summer always brings flares into my world, however this is the first time I’ve experienced them without any sort of nerve dulling medication. It could be that the pain is worse, or it could be that I’ve just never felt it in its entirety before.
Whatever the explanation, it’s always a battle to cope with an increase in pain. Chronic pain is very different to acute pain, however a sudden increase in chronic pain still feels like an acute injury. It still feels like an attack. It still takes a lot of active and physically passive work to overcome.
A new t-shirt with a helpful message
Sometimes I wonder if coping well gives a false impression of my condition. When I have been coping well, it gets harder to ask for help because first I have to explain that my pain has risen to an incapacitating level for no reason other than that I have CRPS.
This is a hard thing to keep going back to, this helpless mental place. A couple of nights ago I had to call my Mum to bring me dinner. My prince was out, I couldn’t cook the food I had and I couldn’t get behind the wheel of my car. Even home delivery was out as the only food that comes that way, and that I can eat, is ribs from the pizza shop. They were outta ribs! Doh.
Independence is one of the most affecting things that chronic pain steals away. I’m better at asking for help than I used to be, however I still struggle with some emotional turmoil every time. Changing how I think about being dependent on others for certain things is one of the toughest challenges that I face in letting go of attachments.
I know that the stress part of this is all in my head. I have the power to change my perspective. Change is hard, we all know that. I’m actually glad that I can see where I need to improve, that I can see the thinking that is hurting me. It’s pretty hard to fix a problem that one is blind to.
I can see you, problematic habitual thoughts, I will keep releasing you until you stop finding your way back.
In the meantime, today is far too exciting to dwell on upsetting stuff. It’s Laura Marling day! I have to go in The Fonz (my wheelchair) and accept some transportation help from my amazing friends, but I’m ever so rapt that thanks to these means, I can still go.
That makes me feel pretty damn lucky.
Love & Air Kisses,
Caf
P.S Apologies for delays in responses to your comments and emails. Please know that every one of these is greatly appreciated and I’ll do my best to get back to you as I increase my capacity for coping with these recent setbacks.
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.
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.
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.
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…
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?
Hello! Welcome to my blog. I like pretty things, creating things, writing things & mocking things. I live with Complex Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy (RSD), a painful and poorly understood chronic pain disorder. Life isn't all doom and gloom though, Rellacafa is where I share my struggles, successes and lessons as I continue my journey back to health. More about me...
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