Tag Archives: Pain Flare

Talking is for the Lucky People

Dear Audy,

Life is lonely without conversation.

CRPS has been slowly crumbling my body since I was 24yo. With each progression, I found ways to pace out activities and push through the pain, while I still could.

But there are limits to how much I can push through without making things worse. Limits that keep shrinking.

I’m just trying to cope, it’s all that I ever do. I feel at fault for not healing, not winning. I feel like I must have The-Secret-ed myself into this painful life. I feel like I didn’t appreciate freedom and health enough when I had them.

I feel like I should be able to improve things, to be mindful, let go and find happiness in just being alive. I feel like whenever I get to a place of acceptance or comfort, those physical limits go and drop a little lower.

I feel hurt and abused by fate and bitter and guilty for not being able to keep that shit in check.

My ability to communicate is now limited to mumbling a word or two and causing a drastic increase in pain, or briefly text typing. It’s the predictive text feature and smaller movements that mean this hurts less than keyboard typing.

I figured that if I could text, then I could blog using the WordPress app, even if it’s just thought ramble, even if it’s short and pictureless and linkless and a different way of blogging than I’ve practised before.

Text typing doesn’t not hurt though. I can barely remember what it’s like to do anything without having to physically suffer for it.

Just typing on my phone.

Just drinking a cup of tea.

Just brushing my teeth.

I can’t tell you how much I wish I were exaggerating, how much I wish that what I suffered from was the motivation problem that so many people who have never experienced my pain believe it to be….I fucking wish it was that easy.

Every activity that I do begins with a stretching/Feldenkrais warm up and a lay-down-on-the-heatpack cool down. It takes hours.

Every day, I try to move as much as possible and I try to relax in between activities and after I’ve done all that I can.

My best never feels like enough.

I do it anyway, because all I have is this faint hope that if I keep working at being a good little chronic pain exercise doer then eventually things will start to look up again.

Maybe I’ll be able to drive again.

Maybe I’ll be able to go for walks again.

Maybe I’ll be able to cook dinner again.

They aren’t big dreams for normal humans, but I can’t realistically hope to achieve anything higher on the dream staircase without passing over those steps first.

I must climb on in silence, because I can’t fix what is wrong with my face. All I can do is hope. A hard knock to take, but there it is.

Talking is for the lucky people.

Love & Desperation,
Caf

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  • A Wily Truth

    Dear Audy,

    Thank you for sending me such kind thoughts after my last post. I wish that I could react and respond like a strong person, but I am just a noodle with dried out edges.

    Writing by talking ruined me. My face just stopped working after that and decided to spend all of its time spasming, swelling and relocating its movable bits. Speaking is stupidly painful, both for me and for the listener because I sound like a toddler who hasn’t learnt real words yet. It’s like life was watching me summon all of my strength to simply communicate and so it cackled with power and then sent a bit of extra struggle my way.

    It has been almost a week since I last smiled, or made a facial expression that was not physically torturous. Wearing my glasses adds a layer of painful pressure, however not wearing them and attempting to look at things adds a layer of painful vision. Basically, just having eyes is hard for me right now, they hurt my jaw.

    I type this with my stinging fingers. An act of defiance against the silencing.

    An act of victory over the recent month of hands that wouldn’t move at all without blowing a little bit of my brain out of my ears.

    Typing hurts and I will pay and I will probably get angry and frustrated about the fact that I can’t even do this without severe consequences, but then I will rest and reframe my perspective and remember that I need this. I need to write.

    I need to make some sense out of my mind garbage and feel connected to the world.

    Occasionally, I can hold a pen and so I scribble in a journal. Mostly swear words and nonsensical rage, just to let off steam and get things out of me. I used to feel release from such venting, but now I wonder if ranting hinders me from letting go of things that I can’t change. It feels like using energy to reinforce negatives, rather than focusing on overcoming those nasty feelings that arise from dealing with this failing body.

    I no longer have the ability to write enough words to afford to waste them by going in rage circles.

    I prefer to write to you, Audy. Sometimes it’s because I want to be heard and sometimes it’s just because I need to express myself in a way that’s more than me alone in my head. Blogging forces me to try to explain with some sort of eloquence, rather than just ramping up my rage by repeating problems with a loop of profanities.

    I’m not just writing to you, I’m writing to me. Blogging is a way for me to step outside the bubble and tell myself some wily truths.

    Truths like that one, right there, about the rage ranting that doesn’t help me and the more thoughtfully constructed writing that does.

    And there we go, I do feel a little bit saner now.

    Love & Persistence,
    Caf

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  • When Everything Breaks Down

    Dear Audy,

    I have been dark for a long time.

    I couldn’t talk to you, I couldn’t even look at you.

    For the first 6 years of my illness the Internet was an amazing place where I could still interact with the world, but then I fell too far into the dark and the experience of being online changed. All of my experiences changed. Life was too much to deal with and I couldn’t think clearly anymore. I could hardly think at all. It was too much pain, too much loss and too entirely overwhelming for hope to glimmer through.

    When you were sad, I started to feel like the world was ending, as though everybody was as wretched and miserable as me and that just made me feel sadder. When you were happy, I felt a sense of separation from the world that stabbed like a dagger to the gut, I felt jealous and angry and disappointed, as though everybody had chances and choices that I could only ever watch.

    I have been stuck in a season of injury. A stumble here, a bump there and infections that take far too long to clear. My body stores these afflictions like trophies, keeping physical remnants of pain that are used to perpetually torment me and send me screaming into further incapacitation. When I can scream, that is.

    All of my physical capabilities were suddenly gone. The pain grew and expanded through more of me, increasing in severity through my knees and elbows, shoulders and face. I couldn’t walk, I couldn’t sit up, I couldn’t hold anything in my hands, I couldn’t read, I couldn’t write, I couldn’t talk, I couldn’t smile… And then I couldn’t walk again. As soon as one symptom abated in the slightest, another angrily rose to take its place. I felt so utterly defeated.

    Near the end of last year, I received my last income protection payment from the insurance company. I’d always held onto a sense of hope that by the time the money ran out, I’d have found some way to support myself. That maybe I’d be able to work again, or write, or study. I was so determined to not let chronic pain beat me that I’ve been living in denial about the reality of what I can and can’t overcome through sheer determination. I’ve failed to acknowledge just how much this disease has progressed since its beginning. It’s hard for me to recognise this without giving up. It’s hard to both accept reality and also keep trying to improve it.

    All of me is affected by CRPS, all of me. I can’t simply learn to do something with the other hand, or learn to do something around the use of crutches or a cane because I can’t use crutches or a cane like I could when CRPS was just in my lower limbs. I can’t even push myself in a wheelchair. When I can’t stand on my legs, I just can’t stand. When I can’t use my arms, I just can’t touch anything. When I can’t use my mouth, I just can’t communicate. When the pain soars beyond believable levels of intensity, there is no working through it, there is just survival.

    When the insurance money ran out, I lost another piece of me. I lost the ability to have any sort of independent choice, at all. I am not married, however, living with someone who loves me strips me of any rights to independent disability support. My increased incapacitation means that he doesn’t just have to support me financially, he has to do absolutely everything for me.

    Every part of my being is burden on the people that I love. I might not have asked to live like this, but that doesn’t mean that I don’t feel guilty and useless and like I should be able to offer somebody something in return.

    When I could no longer type, I lost another piece of me. A really big piece. I can only write to you now because my hands are finally allowing me to click a few times on the keyboard, which I need to be able to do in order to get around errors between myself and this dictation software. It’s not the same though, writing by talking is not the same as writing by writing. My words have always been my way of understanding things, my way of working through problems. Writing by talking might not be my way, but I have to believe that it can become so. It is a “way” after all, I have to believe that practise will help to make it “mine”.

    I have felt bound and gagged for so long that I started to forget who I am. I have been waiting desperately for these days to come, for these days that bring enough physical function for me to be able to try to practise this other way of writing. It was such a long wait that I wondered if I was even a writer anymore, if I had ever been one to begin with.

    Given enough time alone in her head, a girl can wonder about just about anything. I can’t trust most of the things that run through my mind because thoughts are the biggest and fattest of liars. If I pay too much attention to them, I end up spiralling further into depression. Instead, I must keep recognising thoughts as thoughts and not as facts. I must keep tricking my mind into focusing on other things, which can get rather complicated when I can’t move, can only feel pain and there really seem to be no “other things”.

    Every day that I could, I pushed myself through the motions of performing the physical and psychological pain rehabilitation techniques that I have learnt over the years. Most days, I was barely capable of anything, I’d have to settle for simply breathing calmly because no matter what, there is always breathing calmly. Breathe and let go, breathe and let go…

    Being able to function is dependent on faith. Sometimes, faith is also reliant on being able to function, as misguided as that may be. I had a lot of faith in the things that I used to be able to do before stumbling into this ridiculous rough patch of life cabbages. I could find happiness in a day if I was simply able to cook, or clean, or write, or exercise, or plan ways that I could use these abilities to improve my future existence. When all of those things fell apart, so did my faith that life would ever improve.

    The sensation of hope seeping away is like a smothering of the heart. I could recognise that I was suffocating, but I couldn’t figure out how to gasp again. The will to fight burns inside a person; passion, faith and motivation are things of fire. Where once my flames had flickered, I could only find dull glowing embers. I continue to take some solace in their light, embers are not ashes. If I continue to focus, I might yet feel that fire once more.

    I have been lost and I have been grieving, but I hope to find my way again. Where I am today is just where I am for now. Tomorrow could still be different.

    Love & Hiccups of Hope,
    Caf

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  • My Great Tasmanian Getaway Part 3: Bruny Island

    Dear Audy,

    A few days after my ankle flare inducing adventures, I was ready for more. My ankle hadn’t exactly stopped bothering me, however I was feeling confident that I could handle the remaining pain and also, holidays don’t go forever just because you need more time to recover. Sometimes, it’s go adventuring now or miss out completely, so I employed a little bit of that desperation that I wrote about not too long ago.

    Kettering just happens to be the gateway to Bruny Island, we could actually see the ferry from our perfect little cottage. It would have been just plain silly to not have taken it at all during our time there and so, we drove aboard. Bruny Island turned out to be one of my most favourite adventures of the entire trip.

    Thumbs up for being on a boat!

    20130430 On a boat


    Bruny Island is magical. It’s one island, but it’s kind of two islands connected by a neck, which is a little bit like the conjoined twins of islands, which is delightfully rare and special because islands don’t have to deal with life threatening medical issues.

    The island isn’t really that big, however you can drive around and enjoy a heap of gorgeous and contrasting views of nature and the ocean. From idyllic bays to hazardous surf, plus some fun almost-four-wheel-driving tracks to follow and my most favourite discovery of all…wild quolls. More on those later.

    This blurry-thumbed-gorgeous-water picture is from the north west side of the island. North Bruny is smaller and less adventure-filled than South Bruny. We drove around in a loop along the dirt road closest to the coast line and vehemently envied all of the people that live there. There were farm houses there that basically had their own bays, beaches and cliffs, surrounded by their own paddocks and bush. Want.

    20130430 North Bruny Beach


    There are a lot of hiking opportunities on Bruny that I would love to be able to explore, however CRPS means that I have to choose when and where to use my steps carefully. So, I chose to use some at these stairs, which was difficult and painful, but so very satisfying.

    20130430 On The Neck Bruny


    That’s the neck between the two parts of the island behind me. I’d never seen anything quite like it. The right side was a quiet bay and the left side had these awesome crashing waves that made me want to dive right in despite the horrific consequences that I’m sure would have followed such a leap.

    Continuing south, we couldn’t help but stop and pick up some Bruny Island Fudge, which is probably one of the most amazing things that people have ever made out of sugar. Mmm, rare local fudge.

    The next stop was Adventure Bay, which is famous on account of Captain Cook landed there once. It’s one of the prettiest places that I’ve ever seen, I can see why he stopped. It had started raining when we got there, so we didn’t explore on foot, however we did pick up some lunch and then stopped to eat and were treated to this amazing view that just about made me lose my shit. I might have been channeling the internet famous double rainbow guy.

    20130430 Rainbow Adventure Bay


    Fuelled by coffee that was served in a greenhouse cafe (genius, it was freezing and greenhouses are lovely and warm) we continued our driving adventure for as long as we could in one day. You don’t exactly want to try to go too far or get too lost on an island as missing the last ferry back to the mainland means that you’re staying the night whether you planned to or not.

    We drove past some tiny and very old towns, then stopped in at Australia’s southern most winery and did not leave empty handed because delicious. A little bit of wine and all of a sudden my pain from being in the car all day was easier to tolerate. Magic!

    Our last intended destination was Cloudy Bay, which was special and spectacular. Rows and rows of breaking waves that looked like they’d just love to break a body in half, given a chance (some hardcore surfers that were camping nearby seemed happy to take that risk, oh, to have enough health to gamble with…*starry eyes*). Cloudy Bay also had a rich history of being a meeting place for several aboriginal tribes that once lived in the area. You know, before primitively ignorant white people showed up and did disgustingly awful things to them that I can’t talk about on account of it’s too horrifying.

    Here I am, doing the thumb hula at Cloudy Bay, which quickly became what I couldn’t help but do for most of our tourist pics. When you’re onto a good pose, you’re onto a good pose…plus, dancing is awesome. If you’re wondering about the pink jacket, well, I haven’t actually bought a water proof jacket since I was a teenager, so that explains that.

    20130430 Thumb Hula Cloudy Bay


    We went for an all wheel drive through the bush on our way back to the ferry. That’s kind of like four wheel driving, but not quite, but almost. The logging tracks took us through some amazing scenery that was further enhanced by the light drizzle. Forests just tend to look better in the rain.

    20130430 Forest Bruny


    I could happily spend a few days exploring and soaking in the wonders of Bruny Island, however we just had the one day with my noncooperative legs and I think we did pretty well to squeeze in as much as possible. I was exhausted, but thoroughly impressed with having survived all of that driving. The sun was setting when we arrived to wait for the last ferry back.

    20130430 Sunset Bruny


    That was when we saw them.

    The quolls.

    I thought quolls were almost extinct! But, they’re doing okay on Bruny Island. The first one that I saw was earlier in the day and it was roadkill. It took a lot to get my head around that and I had to immediately do some googling to find out how it was that this island paradise had enough quolls living on it that they were just jumping out in front of cars (mind you, all of the nocturnal wildlife jumps out in front of cars in Tassie, it’s best just to not drive anywhere at night). I was very pleased to learn that quolls are still living in a few places in Australia thanks to conservation efforts and oceans that keep foxes away. Go, conservation!

    We were waiting for the ferry at dusk, when all of a sudden, my prince started whispering violently and beckoning me to him. He had seen a quoll!

    I was so freaking jealous, I knew there was no way that little bloodsucker was going to reappear for my viewing pleasure. Slightly disappointed, I sat back down to finish drinking my deliciously potent Cheeky Rascal cider (it’s the best, you guys, this is the best cider), when I heard some rustling on the ocean bank. I stepped forward and got a nice big eyeful of a chocolate brown quoll with delightful spots who looked back at me and then disappeared into the brush. Thrilling!

    My prince wandered down the bank to see if he could get a look, at which point the quoll quite distinctively told him to fuck off. I know, I didn’t know they spoke people either, but if that quoll did not squawk-honk “Fuck off!” then I’ll eat your sombrero. I’m not sure how the phrase translates into Quollese, but that hard-assed little furball had the English down pat.

    Why do I care so much about quolls? Because I did a project on them in grade 3. Yep, that primary school stuff, it sticks with you. Basically, quolls are awesome because they look like this. Nawwwwwww….

    Click for image source.

    Click for image source.



    But they are little carnivores that will totally rip your throat out!

    Well, maybe not your throat, but definitely the throat of a smaller victim. Give them a break, they only weigh up to about 7 kilos, which is slightly less than my maltese shih tzu (I’m under no pretension, a quoll would kick his ass…just don’t tell him that). Quolls are like cute little attack cats. They can kill echidnas, with their bare hands and jaws. Could you kill an echidna with your bare hands and jaw? No, you’d take one bite of spikes and be done with that. You see, quolls are tougher than all of us.

    Plus, they’re spotty. Who doesn’t love an animal that’s spotty? I really feel like the noble quoll does not get enough respect amongst the other Australian animals. He is a marsupial too, Tasmanian Devils. He is cute too, Pademelons. He has a temper too, Koalas and Wombats. Sure, he also happens to live on a couple of islands that are not part of Australia, but he’s basically as Aussie as the rest of you and can’t we all just get along?

    Our Bruny Island adventure was one of the most exhausting but rewarding things that I did in Tasmania. It came with added thrills because, before I left home, I honestly wouldn’t have thought that I was capable of physically enduring so much in one day. Sure, I mostly just sat in a car, but even that is a challenge for people with chronic pain. I was a proud little adventurer.

    I have one more Caf Travels story to tell you before I’m done blogging about my Tasmanian getaway. It involves ghosts. Everybody loves ghosts, right? Good. I’ll be back soon with ghost stories and wonderings…

    Love & PRAISE THE NOBLE QUOLLS,
    Caf

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  • My Great Tasmanian Getaway Part 2: The South

    Dear Audy,

    Kettering is such a pretty, tiny town. It really just consists of a bay and some boats. I loved the quiet there and the remarkable view of the stars in the night sky. It was also a great location from which to head out and explore some of the stunning scenery that Tasmania has to offer.

    We went on a lot of driving adventures. My Prince was always behind the wheel, but I was impressed with how much being a passenger I could tolerate. Sometimes, CRPS makes even a short trip as a passenger incredibly painful, however all of these years of learning to manage my pain and associated anxieties really paid off on this trip. Plus, there was the removal of all of those other things that I mentioned in the previous post (those necessary to life tasks) that usually zap my strength before I get to the fun stuff.

    We drove around the countryside and the oceanside. Southern Tasmania has such beautiful landscapes to explore. We stopped regularly when we saw pretty things, or when our legs needed stretching. Clocks just aren’t necessary on holidays that are geared towards relaxation, it was far more rewarding to just amble around and find what we found.

    Things like this dried out wallaby carcass that looked suspiciously like a Tasmanian Tiger…I’m raising my eyebrow at you, extinction.

    20130427 Wallaby Carcass


    Things like these stunning bays and colourful rocks.

    20130427 Bay Posing

    20130427 Pretty Rocks


    Things like 200 year old churches and cemeteries (who doesn’t love an old cemetery?), hills and valleys that appeared to have marched straight off of a milk carton, birds that I’d never even seen before and towns like Cygnet, which has a 24 hour emergency butcher.

    20130427 Emergency Butcher


    There is probably a rational explanation for such a thing, but it just makes me picture drunk locals thumping on the door at 3am screaming “I need a steak NOW! It’s an emergency, dammit, my beer to steak ratio is all wrong!”

    Tasmania was a great place for me to holiday because, despite not being able to hike places like a healthy version of me would have loved doing, there was a lot that I could see without walking too far from the car. We drove down through the Huon valley, which is rather picturesque. Somewhere near the bottom, we adventured to the highest and lowest points of our trip.

    This view (achieved via car)…

    20130427 Highest View


    And this view (achieved via clutching rails and writing off the next day to ankle rehab)…

    20130427 Hastings Cave


    My ankle was totally done in at this point. The strangest thing about my adventure induced original site ankle flare was that it remained just in that original region. CRPS first struck me on the right side, from my toes to about midway up my calf. It’s easy to forget this because I generally have generalised pain accompanying everything these days, however there is a reason that CRPS has “regional” in it. The ankle gave me grief for the next couple of days, but I can’t help thinking that the fresh ocean air helped to keep it in its place. Usually, those flares last much longer and quickly mirror to the other leg and then up into my arms.

    My spirit for adventure was not going to be stopped by a stupid one region flare, no Sirree! My Prince and I needed to relax and rejuvenate and the next day we headed into Hobart and spent an afternoon at the only actual spa that we could find in the vicinity.

    Seriously, guys, a place where you get facials and massages is not a spa if there are no tubs of bubbly water there! Who approved this word appropriation? Because I disagree strongly. If facials count as a spa, then what am I supposed to called actual spas? Steaming wet pits? Those sound like the start of a deodorant commercial. Is it because “massage parlour” sounds sexy? Because if you are mainly going there to get massaged then that’s where you’re going, better get comfortable enough that you can handle a name with a history of use by under the radar prostitutes. Logically, they have more right to use “massage” than massage therapists have to use “spa”. Alternatively, I’ll help you out with a new start…you’re going to a pamper palace. Enjoy your pamper palaces and stop making it so difficult for me to find a tub of hot, aerated water. Seriously.

    Rants aside, the spa that we visited (Savoy Day Spa) was really quite delightful. It was located in the basement of an old bank in Hobart. We spent most of an afternoon rotating between the salt water pool, the actual spa spa, the steam room and the sauna. I could tolerate the steam room more than I would have expected to have been able to, but the dry sauna? Not so much. That’s a bit of an owie burn. The pool was my favourite part, bobbing around in salt water always seems to help put me back on a healing path.

    I need to get one of those pools in my backyard, anyone wanna spot me the thousands of dollars that would cost? Aww, come on…I’ll even consider indecent proposals, that is how much having my own salt water pool would help me manage my pain at home. Also, I just kind of want to hear how indecent you’re willing to get, for my own sick amusement…

    We were so in need of that relaxation that once we were spa-ed out, we basically floated out of the basement and back to the car. At which point, we proceeded to not even be able to find the right road back to Kettering and ended up on a not entirely unenjoyable windy drive that took us most of the way up Mt Wellington before we eventually figured out where we’d gone wrong. Sometimes, when the body releases tension, it lets go of a significant amount of brain power right along with it.

    My body started to behave better after I’d taken some time out to be nice to it. My ankle didn’t exactly leave me alone, but it did calm down. The next day was for being sleepy and listening to the rain on the cottage roof. After that, though, I was ready for another adventure, pain or not…

    Love & Adventures,
    Caf

    P.S. I’m feeling quite a bit better than the shrivelled mess that I was yesterday. The evisceration has eased off and I can even stand up almost straight! More stretching, pacing and Feldenkrais today…I can bounce back quickly, I can!

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  • When Coping Skills Collapse…

    Dear Audy,

    I fell a little bit behind in my NHBPM challenge, frankly, I fell a little bit behind in general. It’s kind of perfect that one of the topics that I’ve missed was to write about change; change is the exact reason that I had to take a break from blogging for a couple of days.

    In learning to cope with Complex Regional Pain Syndrome, I have to try to embrace change. Being inflexible is not a viable, long term option for me. I can’t rely on my body to stay in one state from moment to moment, let alone day to day. Embracing change isn’t easy. I’m not sure that’s where I’m at yet, I might still just be learning to tolerate it…

    I’ve been having some trouble with my back for as long as I can remember, however that trouble decided to upgrade to TROUBLE in recent weeks and I’ve struggled to manage the fallout.

    The tiniest changes can throw a sensitised body completely off course. My back problems usually start with a bit of a twist and then spiral into wayward pain syndrome symptoms throughout my body. There isn’t always a noticeable, injury-like trigger, sometimes it just seems to happen. I suspect that in these instances, there was a trigger, it was just so very slight that I didn’t feel it happening at the time.

    How silly of me to unpack a dishwasher! How dare I bend down to pet the dogs! What was I thinking attempting to stand up from that chair?!

    I see an osteopath regularly to help me keep my spine in line, however, sometimes shifting my skeleton back into a functioning place is just as painful as shifting it out of one. It can take a few days for my body to adjust to the adjustment. This past week has just been one of those occasions in which I take longer to recover than normal.

    Extended recovery times are just par for the course with chronic pain. It takes less injury to knock our bodies out of whack and more effort to shift them back.


    Sudden change, such as this, can be hard to deal with. My pain levels skyrocketed and my mobility seemed to be mocking me from just out of reach. I’ve needed my cane to walk, which tends to exacerbate pain in my right shoulder, because being unbalanced is a change too and all of the changes have consequences.

    I thought I was almost recovered for a moment there and drove Sammy Fluffball to be transformed into HandSomemy, which is about a ten minute drive done twice.

    Maltese Shih Tzu

    Now I can’t look at him without thinking words like “adorabubble”



    My back really struggled to accept this activity, despite all of my postural efforts to ease its pain. The following day brought all of the painful punishment and I had to resort to painkillers to stop the moaning.

    Life with CRPS is not very action packed, however, losing the ability to even sit up places further limitations on activity options. Add to that the brain fog caused by enduring such high levels of pain, mixed with needing to medicate the problem, and the days can seem to stretch on forever.

    There’s a lot of staring at the walls and cuddling of the dogs. There’s some Feldenkrais, some stretching, some attempts at walking evenly, some soaking in an Epsom salted bath, and a whole lot of trying to find ways to not get upset.

    The days like this, the days that drag, are the hardest days to not think about the changes that CRPS has brought into my life. These are the days when I feel the most trapped, when I feel the most disabled. These are the days that exemplify just how crippling chronic pain can be. These are the days filled with longing so powerful that it’s hard to keep track of all the thought trails that are taking me towards sadness.

    I want stability and things to hold onto. I want a springboard foundation from which I can fling myself towards any plans that I choose to pursue. I want to feel free in a moment, to feel limitless and safe. I want to turn back the clock and just freeze time there, in a pain free paradise of youth.

    I want to change so much that you wouldn’t recognise me. Leap forward through time to that pot of gold at the end of the rainbow, that place where dreams come true. I want to heal from my soles to my soul and morph into my butterfly self, my realised potential.


    Escapism can be nice, but we all have to return to reality eventually, because it is always changing and there are things that need to be taken care of as they arise.


    Yesterday was the day that it was all too much. Yesterday, I could hardly think rationally, all I seemed to do was feel. It was a beautiful day, you see, the kind of day that seems like a gift from the sun-kissed Spring. The kind of day when Instagram fills with smiles, scenery and Summer dresses.

    The kind of day that sees temperatures rise and humidity become denser. The kind of day that my CRPS despises, that turns my bones to lead, melts my muscles, boils my blood and scorches the underside of my skin. The kind of day that casts a cloud over my mind, that zaps my energy before I even awaken, that weakens me from my knuckles to my knowing.

    It’s so difficult to know things when one feels attacked by the very atmosphere that miraculously sustains life. I thought we were friends, Earth.

    I lost grip and let go of coping. Perhaps I had to let go. Maybe, sometimes, it’s only possible to cope by not trying to. The ability to cry is built into us for a reason.

    I waded in a dazed confusion for several hours before sinking into the sobs. I could feel the wave coming, but there was nothing to grab onto, no way to get back to shore before it hit. I gave up trying and just let it wash over me.


    I acknowledged the deterioration in my physical and emotional states and then let go of the day, it was the only thing that I could do. I gave up striving to achieve anything other than getting those feelings out. Release was the only way past them.

    Forcing words doesn’t work. I’ve tried before and I tried yesterday, but I can’t hear my muse when my mind is in a maelstrom.


    I cried and I cuddled and I breathed deeply as the sorrow streamed down my cheeks.

    Eventually, my inflamed emotional baggage seemed to empty and clear thoughts began to return in snippets. I engaged with some procedural hard drive rearranging; got a little something done that I’d been putting off. I practised some Feldenkrais, stretched, took a shower.

    I switched myself into chill out mode and told some of my troubles to a bowl of ice cream.

    I watched Krysten Ritter and Alicia Silverstone play vampires with hearts of gold and was genuinely surprised by how much I enjoyed it – sometimes cornball comedy is the perfect prescription. I watched Aubrey Plaza befriend a time travel planning crazy-cake, only to become completely absorbed in a sweet story that masqueraded as a confusingly cruel joke.

    When emotions are boiling out of control, the simple movies can seem so much more preferable to the fancy-pants, popular ones. Light entertainment can be the perfect distraction when stories that run deeper carry a risk of re-igniting the crying.


    I had dinner delivered and removed the physical danger of food preparation. This turned out to be a good thing considering my movement restrictions, because during the hour or so that I was eating, my ant-free kitchen lost its status in a spectacular way.

    Little buggers were marching one by one directly from my laundry door to my kitchen bench. The nerve!

    My indignation was quickly followed by a massacre that sucked any energy I had left for feeling things, or moving, right out of me.

    I started to feel better. I started to feel like my strength would return soon.

    Today, my back is feeling a little better at times and fairly messed up at others, but I am able to manage it more effectively than yesterday. I had been in such a state that my efforts at Feldenkrais had been too enthusiastic and I ended up making myself hurt more. Thankfully, today’s session only brought the better type of result and really helped me to get moving this morning.

    I’m no longer feeling sad or guilty that I couldn’t be a perfect, every day blogger for thirty days straight. I’m giving my inner perfectionist the rudest gesture I’ve got. I’m feeling comfortable in doing my best and sometimes that means taking time out to just feel, process and rest.

    Breakdown days can be inconvenient, but they are just a part of living a life with imposed limits. Experience has taught me that holding off on facing up to such days just drags the issues into the following ones. It can be a necessary delay sometimes, when there are unavoidable things to be done, but eventually the emotions always catch up and demand to be dealt with.

    Do you have breakdown days, Audy? What helps you to come back from the emotional edge?


    Thanks so much to everybody that has been supporting me in the NHBPM challenge! If you like what I am doing, please share these posts with the people that you share things with or click that little thumbs up. It’s CRPS Awareness Month, which is why I’m choosing to disclose a little more about my health on a daily basis. The more awareness that we can raise, the easier it will get for people who are navigating the choppy waters of chronic pain.

    Love & Tissues,
    Caf

    P.S. I’m terribly behind at replying to emails and comments. Thank you so much to those who have written to me, I shall get to replying just as soon as I am able. 😉 xx

    WEGO, CRPS Awareness Month, #NHBPM


    This post written as a part of National Health Blog Post Month, run by WEGO health. Check out what people have been contributing via #NHBPM on Twitter, or joining the NHBPM Facebook Event.

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  • Vehemently Hoping

    Dear Audy,

    Hope seeps through troubles and triumphs, sprinkled sparsely sometimes and occasionally overflowing.

    I’ve held it in my weakened grasp throughout this past week. Slowly, ever so slowly, I was able to get some movement happening through my pelvis. The spazzy muscles began to let go and a visit to the Osteopath on Wednesday helped to speed along the skeletal straightening.

    Hope has its own plans to live, to harness Hope, then one must give.

    Rellacafa

    Oh really, body? OH REALLY, EYEBROWS?!



    I’m well aware of the ability that inactivity has to worsen an injury, hidden under the disguise of helping. I’ve tried to be proactive in getting through this setback. As I started to get some movement back, I gently worked in some Feldenkrais and attempted a short walk.

    It was a four song walk. Lisa Mitchell is lovely to listen to on a sunny stroll. I moved carefully, focusing on my posture and breathing. I made it maybe 100m from home and back. Likely it was slightly less than that, I don’t know, I’m not a tape measure, all I know about lengths is that songs have them.

    I then lay down in the most comfortable, cushioned position for a rest, just like the pacing princess I was striving to be.

    An hour later, things weren’t improving as expected after gentle movement and rest. I really should know better than to go expecting things, however that’s kind of like saying I should know better than to have Hope and if I think about that little conundrum for too long then my eyeballs start to spin.

    A little courage, a little faith, some little thoughts to be replaced. Hope can grow in a tired soul, if nurtured there by one hopefully bold.

    Twenty four hours later, I still haven’t recovered from my stroll. I passengered in to pick up my expensive replacement dog chew toy mouth splint this morning. Being in the car was rather torturous and then sitting in the waiting room was not possible.

    There is, handily, a couch in that waiting room but there was this stupid bitch totally taking up the whole thing lovely woman who was there first and in no way existing just to be in my way.

    With the dentist running late and me not being able to sit to wait, I wandered a very short distance to a nearby coffee shop. There I did my waiting instead, because I arrived behind not one but two precocious cows buying elaborate coffees for every stupid bitch in town There I was served by a very nice lady who was cheerfully doing her best and who brewed a delicious cup.

    Then I bought a regret cookie. A delicious, slow-poison laden, circular mound of sweet indulgence. Mmmm, breakfasty, sugary regret.

    This is a common side effect of too much time in a symptom and life setbacks blender. Paleo eating is the best way I have found to fuel my body, but when I can’t shop and/or cook, I have to make allowances. They are frustrating compromises and aren’t often cookies, but when it comes down to eating something processed or not at all then I have to hang up my idealist pashmina and stick on the old reality cap.

    If only indulging in sugar wasn’t actually the feeding of an addiction. Sticky in more ways than one.

    Cycles are so vicious sometimes! We should ban that. All cycles need some intense anger management.

    I wish I could afford people to shop and cook for me, eating well really does help me so much. Alas, I cannot.

    I wish I could plan and cook my own meals, all of the time. Alas, I cannot.

    Currently, the pain is severe, like there are a bunch of bolts screwed into my pelvis. As well as a nice big one in the middle of my lower back. My central sensitisation seems to be amplifying things because this pain is more excruciating than during the lock up, before muscles started to move again.

    I’m back on the bed, hanging out with the Hope that I grew earlier and my fluffy white canine knight.

    Hopefully this pain is healing pain.

    Hopefully resting will help this time.

    I need to get pretty and go out tonight. Because family celebrations wait for no sister.

    Hopefully I’ll be able to sit up.

    Hopefully resting will help this time.

    Love & Some sort of elusive feeling that things will work out OK,
    Caf

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  • Here, Have Some Setbacks To Go With Your Setbacks.

    Dear Audy,

    It’s so very wonderful that I had a few good days last week. I needed that boost. Without it, the physical condition that I currently find myself in might just have shattered my coping skills into useless shards.

    But, as it is, I’m hanging in there.

    Hello, Old Friend.



    Something has happened to my hip. On Friday, I had an awkward “getting into the car” experience and things have been sliding downhill ever since.

    It could be a twisted pelvis, which is not uncommon in my world. If that’s the case, it is much more twisted than it usually gets. The only other experience that has felt like this is just a little bit too distressing to even consider at this stage. Blinders firmly on, unless the sunnier path doesn’t pan out.

    But it totally is gonna.

    I can’t sit up. Well, I can, but it’s like having a spear through my pelvis and left hip. I imagine. Probably an actual spear would be worse. More splintery or something. And there’d probably be a little dude still trying to kill me and demanding, in his primitive language, to know about my astonishing height and crazy clothes. But then, a dinosaur would chase him off and I’d spend my last moments as a time traveling warrior staring into its gnashing jaws of death. Probably that would be worse.

    I can handle being in the recliner, but only if I’m prepared for the pain to slowly climb until I go and lay down on the bed and pillows again. Flat.

    I can handle being propped up enough to read, but only if I’m prepared for the pain to slowly climb until my upper half is flat again. The legs, those do need to be raised on pillows.

    It’s a shame I can’t read with my knees, really. And where are my retina projector glasses thingies? I know you exist! I could really use a monitor that I don’t have to hold right about now. Come on, aren’t we living in the future already?

    I can hobble as is necessary, but I need to use my cane and it’s a precarious activity. A twitch at the wrong time is like twisting that splintery spear.

    CRPS in my hands makes mobility sticks of all kinds a little bit more useless. However, sitting difficulties and a small house make the wheelchair useless, so, what’s a physical mess of a girl supposed to do? I’m getting by.

    I’m switching between positions, because even the laying down, it hurts. I’m switching between activities: reading, iPad-ing, TV, listening to music, blogging…as soon as I feel my mood start to dip or anxiety rising I make a switch.

    It’s a good tactic. I’m three days into this game and I can still see the funny side. I still feel like I’m playing, not just being played.

    I’m trying to find the strength to call a friend, or plan a call/visit with somebody, but I’m a little bit too stuck up on not wanting to answer the “How are you?” thing. Maybe it will be easier to deal with a one on one answer after writing about it here. Maybe I’ll be able to handle a text then.

    I still have hope, so the maybes, they’re still possible.

    Maybe I’ll wake up tomorrow feeling fantastic.

    There are a ridiculous amount of personal things happening in and around my life right now and I don’t know how I’m going to deal with it all. Especially not from this horizontal perspective. Stressful stuff and important stuff that needs to be handled; none of that goes away when health does, it just gets more challenging.

    I need to keep my wits about me. I absolutely cannot let my current setbacks get in the way of my hope, no matter how overwhelming it all seems.

    I owe myself more than that. I owe myself the best chance of coping that I can possibly achieve. Frankly, I’ve put myself through enough these past few months. Circumstance is putting me through enough by itself, without lack of coping adding to the strain.

    If life is gonna keep punching, then I’m not going to let the bruises stop me from swinging back…scratch that, I’m not playing its game. I’m just gonna take these punches and try to do some good in spite of them.

    I’m not gonna fight you, Pain. I’m not gonna fight you, Problems. I’m going to overcome you. It just seems like a more worthy goal.

    Self pep-blogging complete.

    Stay strong, Audy.

    Love & Flexed Biceps,
    Caf

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  • Searching For Stabilisation

    Dear Audy,

    I aged and it was all OK. Lowest key of birthday ever. A lovely friend and her adorable daughter visited, parents visited and then Prince finally came home from housesitting duties. We had planned an evening of birthday dining and movie going, however my dopey body did not play friendly in terms of functionability. I’m still awaiting the day it lets me out, but until then I shall enjoy my birthday roses and just keep working on getting stronger.

    Red Orange Roses


    My challenge of the last three days has been all over burning and aching. I tried to reason with myself early this morning as I lay in bed not sleeping:

    “Come on, it doesn’t hurt everywhere. You’re exaggerating. Where are the places that it doesn’t hurt?”

    They were so hard to find, I had to laugh at my answer:

    “Hair follicles on head, they’re OK. My nose, my mostly gristle nose is feeling fairly unnoticeable. My fingernails…oh, wait, no, those actually do hurt. It’s probably the skin under the nails, but it’s all the same to Brain.”

    Silly Brain. I really need to do some work on its silliness.

    I have to keep going. Make some changes and climb back out of this symptom pit. I have to do this even though the task is especially challenging at this time.

    Full body pain and sensitivity are hard to cope with. There’s the feeling like all joint cartilage is actually lava, the feeling like the whole body is grazed and bruised, and then there’s the fatigue. The overwhelming fatigue. The fatigue that means the body is always on edge and primed for further injury through clumsiness. The fatigue that fogs the mind, the mind that is needed to cope with all of these feelings.

    People keep asking what happened. Why have I gone downhill?

    The answer is that I just..don’t…know.

    Is it stress? Is it the weather? Is it dietary? Is it progression? Is it bad luck?

    I don’t know.

    I just don’t want to stay like this. I’m trying (LOL! Like I ever stopped) to build up my coping strength again. I’m slowly recognising the unhelpful thoughts once more and focusing on distraction when the thoughts are both anxiety and truth.

    I really wish they’d just be one or the other.

    I also really wish that I didn’t feel like I am melting internally, just so you know, Wish Fairies.

    Just in case the wishes don’t help, I’m going to keep trying to keep myself distracted, entertained and focused on what I can do to make a moment better. I’ll keep doing my Feldenkrais and moving as much as possible. I’ll keep searching for inspiration and I will stabilise this mind of mine.

    Debilitating pain or not.

    Love & Petals,
    Caf

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  • Freakin’ Murphy

    Dear Audy,

    As my world operates solely by Murphy’s Law, my dog chewed up my mouth splint on Monday. I wear it to bed so that I don’t clench my jaw and grind my teeth, which is part of the reason why my jaw pops out regularly. And, as I have been having such jaw trouble recently, Sammy decided this was the perfect time to destroy my splint and along with it, a frightening amount of money, not to mention the increased pain I have to endure from sleeping without it.

    My splint has lived beside my bed for years and never interested him before. Apparently, dogs chewing these up is a thing that happens all the time.

    Now I know.

    Crazy dog

    I’m a Tigger! I’m awesome! PLAY WITH ME!



    I’ve come around to seeing the humorous side, but the incident was completely shattering at the time. I have to wait a few weeks to see my jaw doctor (because, of course he’s on holidays), I’m just hoping that I can manage the issue in the meantime.

    The painful knee that I mentioned turned out to be an indicating type of pain. It was indicating that the entire left side of my body was out of whack. I expect this was just the result of the jaw having been out for too long.

    When my body gets twisted like this, I can go downhill very quickly. This made a trip to the doctor yesterday much more difficult than it needed to be.

    I was having a pretty good morning. I was feeling brighter, a little hopeful, motivated enough to put some make up on and leave the house like a real person. I went back to the optometrist and had my eyes retested, which I had been needing to do for over a week. My reading glasses were too strong, I’m now waiting for a new prescription that will hopefully allow me to enjoy books as much as I did when my eyes worked better.

    I was feeling proud that I’d achieved something, that I’d made a step toward improving my situation. Next stop, doctor appointment for simple repeat prescription. Well, it should have been simple.

    Instead, I was told that whoever took my phone call the day before had booked my appointment 6 days after the day that we discussed. Somehow, “tomorrow” became “next Tuesday” for them. I made it clear that I understood there had been a mistake and I was quite happy to come back the next day. I was told that as I just needed a prescription, the doctor would squeeze me in in 15mins.

    Hurrah, I thought, that’s great luck, I thought.

    An hour later, I was still in the waiting room. I was still shifting about from hip to hip, from standing to sitting to pacing the room. I was still expecting the doctor to call me any moment and still avoiding getting upset at the mix up.

    A different receptionist then came over to ask what I was doing in the room at all. After an hour. I was then told that the first receptionist didn’t log my arrival and so nobody knew I was there. She had helpfully gone on a break and not bothered to ensure her job was done properly first.

    I was told I was next on the list and the doctor would be with me shortly. Apparently “shortly” is receptionist speak for another 20-30mins, by which point I could not sit down, could barely swing my left leg and was wondering how on Earth I was even going to get home again.

    I was done. I completely cracked it. I could not hold onto sanity anymore and just saw red. It seemed so unfair. Everybody else at the clinic that day got to go into their appointments, it seemed so utterly crap that it was my paperwork that was messed up and that it ended up resulting in me going from mobile to completely incapable of walking alone.

    I hate that such small things can have such a huge impact on me. Somebody else’s mistake that means I have to wait in an uncomfortable room can take my pain from manageable to off the charts. A receptionist not doing her job correctly can result in actual physical suffering for me. Receptionists working in a doctor’s office need to be aware of chronic illness and aware that the patients in front of them are not just numbers that can be ordered and rearranged and forgotten.


    I ended up telling her off and was more angry than I would like to get at people. I realise she just made a mistake, however this is not the first time I have run into such errors at this clinic, simply trying to get a prescription for painkillers that the government won’t allow me to have repeats on.

    It was all a bit too much. I still needed to get groceries and had to call my Mum to come and help me. I was lucky she was home, because otherwise I would have just had to come home empty handed, sad and hungry.

    I was feeling totally dejected. My good mood of one wake up, after months of waking to sobs, had just been smashed against the rocks.

    But, the Universe had one more little surprise for me…

    As soon as I got home, I called my Osteo’s office and asked to be wait-listed for an appointment ASAP. Luck finally found me about 15mins later when they called back and told me there had been a cancellation straight away.

    Thanks, Luck!

    An Osteo session is the quickest way for me to get a lopsided body back on the track to healing. I’m almost always sore afterward, but then experience my body righting itself over the next 24 hours.

    Yesterday’s session has meant that I’m able to move around a bit today. I’m still very sore, but I can control both of my legs and stand when I need to…and that’s actually a big deal in my life.

    I’m hanging on to a little bit of happy today. It helps that I haven’t needed to go anywhere. I’m still in a lot of pain but I’ve been able to keep my head on straight, despite it telling me at regular intervals that today is the last day of my 20s and I’m wasting it (and my whole life).

    Whatever, brain.

    Love & Surviving Mishaps,
    Caf

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