Finding Motivation in Spite of CRPS Pain & Painbrain

Dear Audy,

It can be the easiest thing in the world to do nothing when I am feeling like crap. The pain of CRPS can be so overwhelming that all I want to do is hide out in the fantasy realms of my distractions. I don’t mean to say that it’s easy to just lie around when my physical suffering is amped up, “easy” is not the right word for that at all, however doing nothing during flares requires much less motivation, concentration and determination than the mountainous task of doing something.

It’s a glarey-flarey kind of day today. The sky had a bit of a sook earlier and then the sun came out to chase away the rain. Annoyingly, the rain ran away to hide under my skin. My body really hates unexpected guests so there’s been a lot of yelling, signals are being thrown around and all sides are taking blows.

Shut up, weather!

Shut up, weather!



The past week has brought so many of these battles, each day it has been a little bit harder to not relinquish control of my life to the battering. I cling to my little somethings, my tiny victories, and I revel in my shining achievements. They might be laundry, or cooking, or simply eating or showering. They might just be little somethings, but they’re mine.

It’s not enough to do nothing, not when there’s a chance that pushing through the pain might not make anything worse. Sure, I mean it might, doing things might just leave me in more pain with less functionality, but I need to keep going as though it won’t.

Doing nothing for fear of consequences, even in the face of very real risks, is still acting from a place of fear. It’s allowing fear to dictate my behaviour, which is basically the definition of being a scaredy cat and I am not some silly little feline. I’m a bigass, king of the jungle type of cat. You can tell by the spots on my bra.

Look, it’s not my fault that the designers-that-be brought leopard print back. I have to shop cheap.

The point is that if I let fear of pain rule me then I might as well just curl up in a corner and forget about living. Pain is just a part of CRPS and since that’s not going anywhere, I need to be able to push on in spite of it.

The way to do that is carefully. It’s not a reckless, throw cares to the wind and just get things done sort of motivation. I’m not trying to invite further pain here, I just want to keep momentum in my life by overcoming the pain I’m stuck with. I have things to work on and goals that I’d like to achieve and I’ve learnt from experience that none of that happens if I simply stop trying when things get rough.

Over the years, I have gotten better and better at moving through physical pain. Of course, sometimes the flares are so blinding that I actually can’t do anything and at those times, doing nothing isn’t an option, it’s just the way of things. Other times, the pain is excruciating and yet I manage to find ways to move through it, to stand on burning feet, talk with burning cheeks, or type with burning fingers.

The human body is pretty amazing at adapting. Pain is a perception and perceptions are things that can be altered. CRPS involves a malfunctioning of the pain system. Instead of being like a fire alarm that alerts authorities to the beginnings of a burny, smoky catastrophe, CRPS is like a fire alarm that some kid in your class tripped because he’d rather go and stand on the school oval than take a maths test. Both are loud and disruptive, but only the first instance is a real emergency.

To move through my pain, I have to convince my mind that there is no fire, whilst also considering that at any instant flames could actually break out if I do something that triggers a flare. It isn’t a case of convincing myself that the emergency isn’t real, experiencing a realisation and then I can do anything after that. Chronic pain fluctuates a lot and every time it starts to increase, the alarm system goes off and must be recognised and dealt with once more.

Confused? Yes. Living with CRPS is very confusing.

Overcoming physical pain in order to function is only one part of what I need to do in order to get motivated. I also need to overcome the painbrain, the jumble of disconnectedness that invades my mind along with all those unnecessary pain signals. This can often be the more difficult task.

How can I function if I can’t even think?!

I’ve realised that I need to be able to work around painbrain in little steps, cautiously and determinedly, just like the way I approach working around physical pain. If I wait until I am thinking clearly then I will hardly ever write anything, or read anything, or learn anything. And I happen to like writing, reading and learning very much.

It’s been a matter of lowering my standards. Life is not about all or nothing. Not every blog post has to be a masterpiece, not every draft needs to be published. Not every status update needs to be perfect, not every email, not every comment or reply, definitely not every tweet.

If I’m being authentic in what I’m trying to communicate then most points seem to get to their destinations. If I’m feeling too cloudy to process communication for a while then I simply don’t have to communicate then. The more I practise, the better I get at reading my moods and recognising when I might not be processing information properly and could stand to take a little time out. The trick to maintaining momentum in spite of regular time out is to keep awareness of when my sanity starts to trickle back in and to just embrace it without fear that it will abandon me once more.

It’s too easy to mentally switch off and then just leave the system down. Especially in Autumn, when the mornings are so very painful. In trying to work around painbrain, I need to keep finding motivation to check in with myself because my state changes. I might end up writing or studying at weird and unexpected times of day, but that’s fine, that’s wonderful, that’s a million times better than not writing or studying at all.

Reading doesn’t always need to be fast or complicated. Sometimes my eyes will skim along the lines, gathering every letter, ingesting every nuance of what I’m reading. Other times, none of the words seem to make it into my head, I have to backtrack every few lines, I have to actively visualise what I’m reading in order to see it, to remember it. Both of these times are OK, they’re just different.

Not being at my best doesn’t have to mean not doing at all.

This is one of those lucky days. My hands are only slightly more pained than when I began typing, probably an 8/10 for those who like ratings, but my fingers are still obeying my commands and so I can cope with that. I’ll rest them shortly. My disjointed thoughts seem to have aligned themselves into a blog post that ended up making sense and won’t be lost to the file of forgotten crazy rambles.

I need to rest now, but I’ve done it. I’ve done something.

I’ve totally earned a break in my fantasy realm of distractions, no guilt or sadness necessary.

Do you find painbrain as difficult to navigate around as physical pain? What methods do you use to try to overcome this?


Love & Cheerleader Kicks,
Caf

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  • 3 thoughts on “Finding Motivation in Spite of CRPS Pain & Painbrain

    1. Lori Joksch

      Thanks again Caf! This has been a huge problem for me also. My CRPS continues to spread from wrists/hands to ankles/feet now to knees, hips and lower back! Feeling some what discouraged and surprised. Probably surprised cuz no one seems to know what comes next. My Dr has put his hands up in the air declaring there is nothing he can do for me. Sadly I have no direction or treatment plan except the meds and 2 SCS that help some. I have been dealing with this for almost 5 years. I have too try hard not to fear what has not happened yet. I would have received the ketamine treatment by now if I didn’t have our work insurance called work comp . It is a very broken system in the USA. Back to trying to live a little. I try to make goals and push myself out of bed daily. I try to help my family by emptying the dishwasher, and/or moving the clothes from wash to dryer or out of dryer. We have 3 of our 4 boys still living at
      Home so I want to help in any way. Problem is if I do too much I not only have increased pain but I become exhausted and will sleep for days. Really after I finally get to sleep. I wake about 12noon then fall back to sleep till 2 or 3 on a good day! Does exhaustion cause
      you to sleep away your life? I think maybe I am so tired due to pain and I sleep to prevent the pain,

      1. Hayley Cafarella Post author

        It’s so frustrating when treatment is denied because of red tape! It’s hard not to fear a future in which the pain isn’t treated at all, I can relate to that a lot. Keep doing all the little things that you can do, they still matter, be proud of every load of laundry! It’s hard to find balance with physical activity and then the painful repercussions, I’m not even sure that the balance exists sometimes, it’s almost a matter of weighing up whether the recovery time and pain is worth the activity rather than trying to change an activity to have less after effects. I guess that’s still a way of balancing! I don’t tend to sleep too much these days, but I do find that days can disappear to flares and all I’ve done is…nothing. I think that it’s good to sleep when your body needs to, if it’s helping your pain then don’t feel bad about “wasting time” sleeping, you’re not wasting time, you’re pain managing ;D

    2. Rach

      “It’s been a matter of lowering my standards. Life is not about all or nothing. Not every blog post has to be a masterpiece, not every draft needs to be published. Not every status update needs to be perfect, not every email, not every comment or reply, definitely not every tweet”.

      Oh my, Hayley, this is exactly my challenge. My frustration, my daily to-do. Every time I sit down to write I have to consciously let go of my own expectations. If I don’t, I can’t write. I like reading your stuff. Thanks so much for reading mine, too. :-)

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