Time seems to have sped up around me this year. It’s almost as though I blink and suddenly a fortnight has flown by. Thankfully, I have been doing productive things with my time, cooking up more and more capabilities with which to improve this life of mine.
I have stepped up my focus from simply cooking healthy food to include more household cleaning. It’s amazing how many months zipped by whilst I was getting to this point. The routine of planning meals, shopping and the actual cooking was a huge leap from years of inactivity and uncertainty. I had to create those skills from scratch. This began long ago when I started learning to manage my pain, followed by strengthening my body and mind to be able to cope with the activity.
Oh so worn out, but loving my new recliner!
It takes a lot of effort to learn how to not allow things to frustrate me. There’s no point getting angry at the things that need doing because it never gets them done. I have to take responsibility for my emotional wellbeing during every minute of every day. How I think about and respond to life and its challenges is all in my head, all up to me.
Not so long ago, such a thought was terrifying. It’s hard to let go of that victim mentality that has a person believe that much of what happens in their life is the result of external forces. With enough diligent work and openness to understanding, it’s possible to switch this perspective and take ownership of our lives.
Sure, CRPS happened, but I don’t have to be its bitch.
There are plenty of new age schools of spiritual thought on this topic. For me, however, it’s far more immediate and physical than anything to do with life, the creation of life and how in the Universe, the Universe came to exist anyway.
When I claim responsibility for how I feel and how I react to difficulties (without wasting energy blaming the difficulty for existing) then I feel power. I feel the power to change it. I see how every situation can be interpreted in a bazillion different ways and how each interpretation can be coloured by personal history and speedy assumptions.
None of this has anything to do with the difficulty itself, it’s all in my head. The size of the problem is up to me. The level of upset that it causes me is up to me, as is how much time I allow it to effect my emotions.
Think of a time when something has happened and a friend or family member got particularly upset and yet you couldn’t quite understand why they were so bothered about whatever it was. Got an instance in mind? Next, please consider this:
Every situation is just like that one. No exceptions. Nope…not even that exception that you just thought about..it really isn’t one. Nope, not even when the “terrible thing” happens to you.
Even great tragedies are different levels of tragic depending on personal involvement in them. I don’t mean that tragic circumstances are comparable, I mean in terms of how upset we feel, within ourselves. A person who lost all of their family in a natural disaster is going to feel a lot differently about the event than a person who was unrelated to anybody effected by the same disaster. It’s the same circumstance from different perspectives, that’s all.
On a smaller scale, it’s not very difficult to see how this sort of realisation can help a person learn to moderate their reactions and in turn, their emotions. If an angry person (who is running late) and a calm person (who is enjoying a day off work) are stuck in the same traffic jam, the angry person isn’t going to get out of it any faster, but they will certainly have a much more frustrating experience than the calm person. Same circumstance, different perspectives. All that the angry person has to do to become the calm person is become aware that they have the choice to do so. A choice that is far easier to ignore than to recognise and far easier to apply in small situations than in huge ones.
The recognition means work, you see. Once you begin to recognise that you have the power to look at things differently, once you become aware, well then you have to figure out the how to actually get yourself to the viewing platform of a healthier perspective. That’s the hard part. That’s the part that nobody can figure out but you.
Some time ago, I decided to consider all sources of upset a chance for recognition. Chronic pain enlightened me to the fact that I can influence my experience of life’s challenges. I do live with constant physical pain and fatigue, after all, every moment of every day is influenced by this. I have experienced the loss of my hopes and dreams, the loss of my independence, the loss of control over my movements, over my clarity of thought. It’s a lot of loss and at times I have been down, very down. Thankfully, the story doesn’t end there.
By battling the mental side of all of this pain and loss, I have been influencing the physical side. Much like the physical side starting messing up the mental side to begin with. Without recognition of this mind/body interconnectedness, I’m not sure that I would have come as far as I have toward functional coping.
I still experience a lot of pain, fatigue and the myriad of symptoms associated with CRPS. I am only coping better because I am looking at them differently and the view is less catastrophic from here. Same situation, different perspective.
These realisations slowly become clearer and appear beautiful to me and so I find it fascinating that they have been born out of suffering.
I can honestly say that I am grateful for my new perspective on living. Until recently, I never thought that I’d thank my CRPS for anything, but there it is. The proverbial silver lining. Past Caf would never have believed in such a thing.
There is a reason that I haven’t been blogging as regularly as I used to and it’s that I have been necessarily focused on what I think of as my “rehab”. The extra activity requires extra pain management (Feldenkrais, baths, stretches, rests) and after all that, the Earth has usually turned through most of the hours in the day.
I’m making great strides, but those still come with painful prices to be worked through…Any night now, I am going to sleep through without waking to the sensation of cockroaches having an ice skating party under my skin. Any night now. I have faith that my nervous system will continue to adapt to increasing movement levels.
If you do happen to be missing regular posts, please join me on Facebook or Twitter for more frequent, less involved updates. Or, you can always pick up a copy of the current issue of Frankie magazine and check out the Everybody Has A Story section. I am still so very excited that an article about me and CRPS is featured in a real, proper, magazine. Check it out! Much thanks to those who have read it and those who have sent me such lovely messages.
Happy weekend to you, Audy. Wherever you are, whatever you’re doing, I hope that there are smiles on and all around you.
My, how time passes quickly when we’re busy learning to love our kitchens! Well, probably not “we”, but that’s what I’ve spent most of my active time doing lately. Living with chronic pain makes for a lot less active time than one gets in a regular body and my devotion to improving my Paleo cooking skills had practically taken over my life. I’m getting better at things, stronger and faster, and I will learn to pace back in more time for creative and relaxing Caf time.
I’ve begun to feel creative in the kitchen, so that’s quite the bonus. Apparently you need to know how to cook things before your brain gives you ideas about how to improve recipes. I didn’t know this, I previously just thought cooking was born in boringtown. Oh, Past Caf, you had some funny ideas about so many things…
This is me shrugging at me.
Maintaining my motivation for looking after myself has taken a little toll on me. Nothing I can’t afford, but it’s definitely bringing issues into my awareness that I need to work on.
This week, I found myself singing “Going Through The Motions” from the Buffy musical episode, Once More With Feeling. You shouldn’t be surprised to learn that I know all the words and have also been known to drunkenly perform Anya’s Bunnies rockout verse from “I’ve Got a Theory”, on command. Nope, none of that should be anything other than expected. Oh, and I have a giant, framed print of the Once More With Feeling poster. Obviously.
But to get back to the point, my musical subconscious was sending me clues that I just might be coming to some sort of breaking point that would require a shift in attitude and management. I wasn’t really just going through any motions, I was learning them. Practising them. Getting in control of the motions that are needed to continue healing and better managing my pain and life in general.
Taking this control accidentally got in the way of me monitoring and looking after my emotions, that’s all.
I mean, I didn’t go to a heavenly dimension and then get cast back into a cold, painful existence. I really didn’t have a good reason to not be enjoying the activities I could fit into each day. Quite the opposite, I should be celebrating that I’m able to do them at all! I can cook! Me! I can shop, all by myself! I can freaking walk!!
I spent years unable to do these things. Years believing that I would never get any better or be able to have independence. I’ve worked damn hard to get to the point I’m at, I really don’t know why I allowed the sniggering voice of boredom to get in the way of me remembering that.
Sometimes it’s hard to accept the slow pace that I proceed at, I need to take some time out, refresh my motivation with some inspiration and then knuckle down and keep going.
Because I am getting somewhere. Maybe not to the social engagements that I’m lamenting missing out on, but somewhere. Somewhere that will lead to even more wheres. Less painful, healthier wheres. I am trying to focus on being happy that I see them, up ahead in the blurry future, like bright spots that have come out of hiding.
I plan to spend more time reading this week, more time writing and more time keeping my mind a positive and pleasant place. When I’m not cooking, of course. I’m also planning on sharing a post with some recipes and notes from my kitchen adventures so that you can see some of the yummy things that I’ve been up to.
Honestly, reading over this post, I feel quite ridiculous about some of the grumps I have been indulging lately. Quite ridiculous, indeed. Why should I care about what I can’t fit into my day instead of what I can? Life isn’t gloomy, it is grand! And filled with Paleo cookies. Double grand.
Have you read the latest issue of Frankie yet? The one with added me? It’s been so very exciting to be featured and to have the opportunity to spread awareness about what life is like for people with chronic pain. A big thank you to the readers, old and new, who have sent me lovely messages. Your words are huge comfort!
Until next time, dear Audy, be clever cats in fancy hats and don’t let pesky thoughts bring you down when there are happier thoughts just waiting to squeeze into your crowded minds.
Love & Hope this realisation sticks this time,
Caf
This week, something massively exciting happened at just the time that I needed it most. Those who read my last post would probably have noticed that I have been struggling a little bit of late. Nothing particularly awful happened, some weeks are easier to deal with than others that’s all. I needed a bit of a boost and thankfully, the perfect thing arrived in my mailbox!
It’s my favourite magazine, has been for years… And this month I am in it!!
Each issue, Frankie includes a feature titled “Everybody has a story”. In issue 47 I am that story. How exciting! I’m so grateful to Stella for putting this article together. I have long wanted to share my story to help raise awareness about CRPS and chronic pain in general. I am so happy with the tone and message of the article that I could bounce off a wall or two.
I wanted people to know the pain doesn’t have to be a death sentence; millions of people live with every day. Not just survive, but live. Probably some of the people you know – not everybody with chronic pain likes to talk about it. Not everybody with chronic pain is even aware that what they live with is a real condition that is shared by so many. Some of those people feel isolated and maybe just a little bit like they are going crazy. I am so pleased and proud to have had this opportunity to help raise awareness.
I would love it ever so much if you check out the article in Frankie, you can get a copy from wherever you usually buy magazines or online here: Frankie Press Online Shop
So yeah, a magazine feature? Total mood boosting magic shot.
Also helping me put myself back together this week were my lovely friends who sent me messages, called me up and came to visit. You are all wonderful!
I’m starting to feel like my old self again. I’m starting to feel able to cope with the pain fluctuations and resultant time spent managing them again. I’m still terribly behind with things like inboxes, however I will tackle these little by little and slowly catch up with my online world. Wheeee!
Do you like to read blogs and vote for things? If so, I have the perfect opportunity for you! Voting is currently open for the Sydney Writers’ Centre Best Blogs of 2012 Peoples Choice Award. I would be most honoured if you wanted to vote for Rellacafa, but please also check out the other amazing writers that you will find on the list and send some love to your favourite Aussie bloggers! Click here to get started.
Oh, and while I am pimping myself… Have you liked the Rellacafa page on Facebook? Please do! I’d love to interact with you there. You can also find me on Twitter, YouTube, and now Instagram. No need to be shy, I promise to be friendly (unless, of course, you get creepy and then I get creepy and we get into a freaky creep off).
Self pimping complete.
I hope that you have a wonderful weekend, Audy! I will do my best to keep regaining my strength and hopefully get back to regular posting next week, including sharing my favourite gems from the blogosphere on Fridays.
I’ve been weird lately. I haven’t had anything interesting to say, or exciting ideas to play with. I haven’t even been able to focus on the ideas that are already projects in my creative realm. I have been very boring indeed. A little bit too boring.
I burst into tears this morning. They just bubbled up out of nowhere and I found myself trying to calm my breathing without even understanding where the sobs were coming from. I was sore and I was tired, but those are things that I am most of the time. Without a bigger issue to back them up, they rarely make me cry these days.
Waking sadness can be hard to shake off. I thought that I was doing okay, I managed to get myself ready for a doctors appointment. I managed to actually get myself to the doctors appointment. However, I did struggle to make it through the appointment without getting teary. It wasn’t even a challenging appointment, just a regular check-in for a script update with a very lovely doctor.
It was weird. I’ve been weird lately. I took my weird self home and tried to figure out how I had slipped into a little melancholy ditch.
I have put a lot of effort into learning to understand my mind, my emotions, my core beliefs and the ways in which all of these parts of me interact with my chronic pain. Sometimes, I think I’m so busy trying to let go of negative thoughts that it takes me a while to notice they’re trying to tell me something that I do need to know. Something I need to learn in order to foster growth in my ability to cope.
There are occasions when anxiety has a purpose. I’ve been so busy trying to conquer it by not allowing anxious thoughts any credibility that it hadn’t occurred to me that I might also be bypassing some valid concerns. By that, I just mean things that can be acted on and fixed. Things that need to be realised and dealt with.
I have been weird lately, but I think I’m starting to get it figured out.
I have been changing. I’ve been working hard at pacing and pain management, as well as cooking and cleaning, which in many ways add up to rehabilitation. Thus, if I look at it differently, I’ve been working hard at getting healthy. Being able to improve my functioning despite my CRPS is the biggest goal I have and I should be proud of how much effort I’ve been putting this.
I’m weird because I am bored. Pain rehab and household chores are slow, tedious things and they’re all I’ve been doing. I haven’t had the strength to extend my efforts past these basic tasks.
I’ve missed keeping up with the world, with friends and news and internet memes. I’ve missed writing and communicating, I’ve missed joking around. I’ve missed thinking about interesting things, rather than just coaxing my brain into doing what’s best for my body. It has to be done, but by golly, it’s boring.
It’s easy to lose sight of the positives amongst all of this missing business. Whilst I haven’t been doing that fun stuff, I have been learning and cooking (a lot). I’ve learnt to make stock, beef stew and mexican beef stew, spicy chicken balls and zucchini noodles, egg slice with bacon and veges to serve as pre-made breakfasts, and most deliciously, paleo pancakes from coconut flour and almond meal. I’ve almost learnt to enjoy the cooking and have just about nailed leaving the kitchen clean afterward (a huge step for me).
I’ve strengthened my motivation to actively manage my pain. I spend less time harnessing my will to fight and more time actually doing things. Through increasing Feldenkrais sessions, I’ve starting feeling connections through my spine and pelvis that I’d never been able to sense before and this is helping me to move in ways that are less likely to set off pain flares. My lower half has been responding so well to these sessions that my body is finally allowing changes to start happening through my shoulders and upper back.
It can be easy to lose sight of my overall progress when I’m saddened by boredom. Sometimes it feels as though I am progressing so slowly that I will never get anywhere. It’s important for me to stop when this happens and remind myself of where I was and how far I have already come. I will continue to get better at this whole living life thing, as long as I don’t get distracted by the negative thoughts that aren’t of the helpful variety.
This won’t go on forever. I need this focused practice to help me keep my pain management techniques in place as I try to extend the scope of my activities once more. Small activities at home are the foundation of my life and when the foundation isn’t strong, everything falls down.
I don’t think that I broke today because I have been managing things badly, I think that I broke because it’s time to start managing more. It’s time to change again, time to try and build the first layer onto this foundation of healthy food and pacing. It’s time to start adding creative and productive things back into the mix.
I’m not sure exactly how this will work. To be honest, I wasn’t even sure where this blog post was going. I started to write because I knew there was something I wasn’t seeing, I knew that I didn’t need to feel sad if I could just figure out what the issue was.
Boredom isn’t complicated, but I guess sometimes it needs to be acknowledged or it starts to say mean things like “you useless cripple!” and the insults can be hard to shake off.
I don’t think that I’ll wake up and cry again tomorrow. I think that I’ll wake up and start working on killing the boredom without killing all of my progress.
I’m glad I sat down and started to write today, it’s already helping.
I feel like my life is missing a bit of sparkle at the moment, but that’s okay, things can’t shine all the time right? Even precious gems become dull with age if they’re left alone and forgotten in their tarnished gold casings.
Feeling unwell over the past week and a bit has meant that I’ve spent a lot of time at home alone. It is nothing unusual, living with chronic pain requires a lot of downtime, however when her body demands this time away from things that are fun, Caf loses a bit of shine just like dormant jewellery in a satin box.
All pain management and no play makes Caf a dull girl.
I’m pretty sure the bug that kept me imprisoned over the weekend has passed, however my nervous system is still requiring me to jump through hoops in order to stop it doing loop de loops. Mostly this involves staying aware of my breathing because pain tends to lock up my rib cage which leads to extra discomfort in all the ways and places.
I need lots of baths in Epsom salts, lengthy yet very low impact sessions of Feldenkrais, plenty of focused breathing and stretches after everything. All of this can take up so much time that I feel like the physical routine of my day is no less demanding than if I were training for the Olympics (probably javelin because who doesn’t want to throw spears?).
All pain management and no play makes Caf a dull girl.
This week I am attempting to regain some health points by cramming more delicious nutrients into my diet. I am still eating a Paleo diet, with the occasional treat here or there. When I have been unwell in whatever way for a few consecutive weeks my meals become quite simple, just meat and vegetables mixed up into a few rotating dishes. I don’t usually feel like being a recipe adventurer when just getting food on my plate is a massive struggle.
But it’s time for a change, because all pain management and no play makes Caf a dull girl.
Yesterday I cooked a gigantic pot of beef stock. It was the first time that this has ever happened in the history of me. I never thought that I’d ever be the sort of person who does this. But then again, I never knew that there where health benefits to doing so. Now I do, and so I am. It went pretty well. Turns out that it’s pretty hard to stuff up making stock, hurrah!
Meat, bones and veg roasting before going in the simmering pot.
Today I shall use some of it to make a hearty beef stew. It’s actually called that, although I’ve never really understood why you would want to put hearty in front of such a dish. The literal part of me is just hoping it’s not a human heart.
Cooking isn’t as difficult as I used to think. Not knowing how to do something and that thing being difficult are not actually the same situation. Who knew?
Hopefully learning to cook some new dishes, using ingredients different than my daily staples, will help me get this body up and running once more with a little bit of regularity. I am so very tired of feeling tired. Time to stop just oiling the machine and try a different fuel source.
Eating paleo has really highlighted how much diet affects every part of my daily function. From the brain fog to the chronic pain. Time to start using this awareness to help with my healing. Just like taking the plunge of acceptance that I should be using dictation software to write, eating to heal is another example of finally taking my own advice.
Sometimes we just need to know something for awhile before it really sinks in. Or maybe we just need time to figure out that magical place where knowledge and practicality combine. Learning is a weird old thing.
This is probably the first time that I have really decided to focus on food as a way of getting out of a funk. Go, progress! I’ll let you know if it helps.
How do you get back on track, when symptoms and setbacks seem to keep piling on top of one another?
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.”
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?
Finding the power to push on can be a difficult thing. This week I have been plodding along, one foot slowly in front of the other and doing my best to keep up with all of the things that I need to be keeping up with. Most of these revolve around taking care of myself, my dogs and my house. However, I have been trying to introduce more productive hours into my day and I am still trying to find the balance between doing too much and doing too little.
It’s a tight rope that I am forever falling off. I cling to it, dangle, kick my legs back over, slowly regain my balance, take a couple of steps and then do it all over again. If life is a show then mine is circus themed and I am surely the clumsiest clown of all.
Pacing is continual lesson, not just for those living with chronic pain, but for everybody. How many people go through life without changing at all? None. None whatsoever. Bodies age, children grow, people learn and then they aren’t quite exactly the same people anymore. Situations change, requirements change, necessities change, priorities change. People must always change too, or how on earth could they keep up with all of these fluctuating circumstances?
The need for changes in approach can become exceptionally obvious for those living with chronic pain. Our bodies don’t just insist on flexible attitudes, they demand it. When we push ourselves to far we often break down completely and the recovery from our efforts can far exceed a reasonable amount of time and pain.
My lesson from this week is that I need to constantly apply all of the pacing techniques that I have learnt throughout my years with CRPS. It’s not the first time I’ve learnt this lesson. I often think that I’m working at a reasonable pace only to find myself flaring and dealing with setbacks in the days and weeks that follow any sort of exertion.
I need to remember that reasonable pace is something that must continually be re-evaluated. If I look at each breakdown as a lesson then surely I will eventually learn something. Hopefully, I’ll learn to find this mystical middle ground where I can be productive without pushing myself into a flare.
The type of productivity that I am hoping to improve mostly revolves around working on my laptop. This is a fairly sedentary activity, however it is particularly hard on my hands. I have been harbouring some crazy dreams that I will be able to somehow build up my typing capability much in the same way that I improve my daily functioning through pain management, but I think it’s time that I fully accepted that I need to embrace some other forms of technology in order to not let my physical limitations hold me back.
The most obvious of which being dictation software, something that I have owned for a long time but never quite been able to get into the swing of. My brain connects differently to my fingers than it does to my mouth, but with a little bit of practice I will be able to strengthen the whole mental-verbal thing and save my hand power for getting other things done. One of the hardest things about hand flaring from typing is that this stops me from being able to do other necessary things such as cook and clean.
I am speaking these words right now, attempting to take my own advice. It’s always easier to know what needs to be done then to actually do it. Writing in this way, using speech, is currently a slow and tiresome process. I have to keep reminding myself that it will become easier with time and that when it does become easier it will allow me to reach for some of my goals without necessarily inflicting excess pain upon myself.
Along with saving my knuckles a workout, I need to improve my time pacing when it comes to writing. I tend to get swept up in ideas and then want to create something all at once, which often leaves me forced to stop by pain when I should have stopped earlier in order to be able to return and keep working at it without having to wait for a flare to subside.
I haven’t yet figured out how to harness the ebb and flow of creativity so that I can turn it on when I want to and off when I need to. I hold out hope that this can be done, but I’m not expecting it to be easy. Let’s face it, I’ve kind of gotten over expecting things to be easy. That’s a pipe dream to begin with.
How do you pace your day so should tasks such that you can build up what you are able to get done? Do you use Dragon dictation software? Any tips for newbie like me?
This week has been all about recovery. I can’t always stop an activity from flaring up my CRPS symptoms, however I can choose to focus on reducing the recovery time, rather than not doing the trigger happy activity. It’s all a part of the mental games that I play in order to cope with chronic pain; the benefits of messing with my own perspectives on things have been too great for me to dream of stopping now.
Driving is my biggest challenge as far as improving my speed of recovery goes. Being able to travel independently opens up so many options in my otherwise quiet and homely life.
I have pushed my limits quite a bit in the past week. I travelled solo to my Feldenkrais appointment last Thursday, which is a good 40 minute drive either way. It’s so wonderful to be having sessions with my instructor after an extended break, she always manages to give me something new and inspiring to think about.
She mentioned that Moshe Feldenkrais defined health by how quickly one recovers after a blow (physical or emotional). Being that that topic is exactly what I have been focusing on lately, it felt like one of those little moments when the universe randomly shows a connection that makes you feel as though you are, in some way, on the right track.
We can’t stop challenging things happening, but we can choose to let them disrupt our lives as little as possible.
The drive to Feldenkrais left me exhausted, but not so much so that the benefits of the session were voided. This has always been my main concern with taking myself to these appointments, I don’t want to undo the good work just getting home again! Thankfully, my body is responding well enough to the treatment that it can cope with a little vibration without forgetting the good stuff that my instructor just taught it.
The second and third pushes to my limits were so that I could go out and enjoy sweet sounding musicians with guitars and fun percussionists. Friday night I went to see Luke Thompson and Tim Hart at The Grace Darling Hotel. This was a lot of fun as the gig was my friend’s choice and so all the acts were new to me. I do love the atmosphere of a low key pub gig! Plus the discovery of new, sexy voices for my tunes collection.
On Sunday afternoon I went to see Holly Throsby play at The Speigeltent. I hadn’t been there in years, so that was a nice adventure. The afternoon light inside the mirror filled tent created a delightful atmosphere and the music was divine. Holly is one of my favourite performers to see live; her voice and performance style are just so darn likeable!
So, that was a lot of driving for one weekend. Pushing my limits this hard at one time allowed me to make some observations that will help me to continue driving and recovering.
I am sorest the morning after, it’s like a hangover of the nervous system. There is a lot of widespread nerve tingling pain and a massive sense of fatigue. This is in part because going out usually involves a later night than staying in. I have needed to take painkillers on a couple of these mornings, which is something I would like to work toward not needing. The lesson? Never have plans the day after I have plans.
I also learnt that how I drive is super important. Any extra tension that I hold onto will result in further pain the next day. I have to breath deeply, stay relaxed, continually scan my body (especially my thighs) for work that doesn’t need to be happening and keep checking that my hands are only lightly touching the wheel (you don’t need to cling to it in order to be in control of the car).
In that way that people can sometimes manipulate immeasurable energies, I try to imagine the vibrations from the car passing all the way through my body. I try to breathe them out, to let them go in a meditative kind of way. Visualisation can be a powerful tool and I find that simply imagining the vibrations dissipating helps me to stop storing up so much stimulation that will only torture me later.
The final important lesson? Three drives in fours days might just be a bit too much, for now. My driving ankle developed quite an intense flare on Tuesday night. My legs have been exceptionally sore and I am having little lightning pains in the joints of my hands.
The past day has seen Melbourne swamped in humidity, so it’s impossible to tell how much of my pain is being caused by that and how much is the activity hangover. I’m going to assume that the ankle/leg pain is probably caused by driving and the rest is just being amplified by the weather. Giving myself reasons that they exist can help with not being freaked out by flares and help me remember that they are temporary.
I have noticed a rise in anxiety in the past 24 hours. Things like waking up with thoughts circling and getting all worried about things, even though I know how little worry actually helps anything.
Last night I had and “AHA!” moment when I realised that my pain and my attempts to keep getting things done were stressing me out a little. Noticing this process is the first step to undoing it. I can still feel those evil thought monkeys nattering about the edges of my mind, however they are merely inspiring me to overcome them, rather than wrapping me up in their lies.
For the rest of the day I shall take a little extra special care of myself. I will stretch, eat healthily, practise Feldenkrais and watch me a girly movie or two. Wow, if this was the 1950s, “girly movie” would probably have a whole other meaning, but this is the 20Teens and so it just means Breaking Dawn and maybe something that’s terrible and full of Katherine Heigl.
So basically, “girly movies” are now “bad movies” that for some reason speak to my inner teenage girl. What can I say? She’s a teenager, she needs constant validation despite the fact that I’ve grown up and locked her inside.
Do you manage to keep driving despite chronic pain? Any tips on how you cope with this on a continual basis?
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?
My apologies for not writing to you very often in recent times. Flares have been holding my brain hostage. Thankfully it’s Autumn now and history tells me that I will be able to take better control of my mind and body in the cooler weather. Yay, Autumn!
As I slowly work through replying to your responses to last week’s post on learning to read again, I feel a little bit closer to you, a little less alone and a little more satisfied with where I am now, in this journey through chronic pain.
It wasn’t until I read through some of these comments and emails that I realised that whilst “reading difficulties” isn’t likely to appear on any symptom list anytime soon, it’s hidden in there under “concentration difficulties”. Chronic pain throws a person’s life into chaos and if that person happened to be an avid reader, losing that part of themselves is as tough as losing any other part (the employed part, the part that goes hiking, the dancing part, etc).
In the eyes of society, reading and intelligence intermingle in many ways. There’s a basic assumption that smart people read and less smart people do not, that smart readers read classic literature and less smart readers read romance novels.
I don’t really buy into this. If I did, some days I’d be the world’s brainiest bookworm and on others, a dimwitted trash fan that is looking forward to getting a copy of Snooki’s literary debut.
Is one of me more intelligent that the other even though neither of me bothered to brush her hair?
Not liking Shakespeare doesn’t mean you are any less intelligent than his biggest fan; loving $5 novels or tabloid magazines doesn’t mean you are any less intelligent than that snobby librarian who sly eyes your selections. It’s OK to enjoy some things that are educational and some things that are just plain entertaining.
However, what if I was buying into the whole literary elitist thing in the past? Was that the thing that made it so frustrating for me to read when I was coming to terms with my CRPS?
Not being able to use my brain, at my will, made me feel like chronic pain had literally taken my intelligence. I didn’t feel like myself anymore, I felt damaged on more than a physical level.
My problem actually had nothing to do with books themselves, it was all about perspective and a few key realisations:
Intelligence isn’t about reading, it’s about learning.
Reading isn’t necessarily the most effective way to learn all things.
Intelligence isn’t about consistency or topics of interest.
Taste isn’t always a reflection of intelligence.
Learning is never a shameful act.
Discovering new ways to do familiar tasks are just as “intelligent” as mastering the physics of space and time. Intelligence is defined as “the ability to acquire and apply knowledge and skills”… the specifics of that is as open as the realm of possibilities for adapting behaviour and skills around a limiting obstacle such as chronic pain.
Letting go of a link between reading and intelligence makes being open to new methods of learning much easier. Some people will have more success with learning by listening to information or watching a presentation rather than picking up a book. Those people aren’t any less intelligent than the ones with bookshelves lining every wall in their house.
By definition, it’s more intelligent to learn a new way to do something rather than avoid it because the old way has become impossible. It’s more intelligent to keep finding new approaches and make changes. It’s more intelligent to fight to overcome chronic pain than to merely lament the activities that it seems to have stolen.
Nowadays, I enjoy my “trash” freely and my more involved readings when I am able. Deciding when/what I am up for reading has just become another part of day to day living with chronic pain and is tied in with the pain rehabilitation approach of pacing to avoid burnout.
I love books, many kinds of books. I don’t think that makes me smarter/stupider or better/worse than anybody, but perhaps once upon a time I did. Frankly, I’m pleased to be free of such a flawed perception and open to the possibility that lessons can come from anywhere.
Nicole Richie taught me that you should never stuff your bra with toilet paper, because then your tits will smell like arse. If that’s not a valuable lesson, I don’t know what is.
What do you think, Audy? Do you think that people who read are necessarily more intelligent than those who don’t? Do you judge people on whether or not they have books in their home, or feel anxious about what others will think of your collection?
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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