Tag Archives: Socialising

Taking on Autumn like a Viking

Dear Audy,

I’m back! I’ve missed you guys. Sometimes blogs get sick, just like people do, but it’s OK, Rellacafa is feeling much better now.

As for me, I’m feeling pretty run-down and determined. They aren’t the most obvious of emotional state friends, yet, here I am. My feelings are like that polar bear and wolf that play together, the ones I spent a lot of time awwwwww-ing at earlier today.

Autumn tends to take a massive toll on my sensitised nervous system, however I refuse to let it plummet me into the depressive depths of this time last year. I’m going to stand up here on the surface and take my beating like a warrior. A sexy, viking warrior. Like Ragnar Lothbrok. I’m going to take this battering just like Ragnar would. Mmmmm, Ragnar.





OK.



OK, I’m back. Sorry about that. I watched the season 2 finale of Vikings last night and now my head is simply full of it. I’m going to miss those brutal spunks.

Wait…

Ragnar Lothbrok


OK. Now you get it.

A couple of days ago, I went on adventure that involved me driving to the city, which is approximately one album away from where I live. Regina Spektor’s “What We Saw From the Cheap Seats” for the drive in and Lissie’s “Back to Forever” for the drive home, if you must know. And yes, I did sing along the entire time because as far as I’m concerned, that is a very important part of being a good driver.

My adventure took me to a writing workshop about sharing invisible lives and telling personal stories. Stories like yours, stories like mine. Most stories are interesting if you tell them in the right way and I’m a firm believer that we can always learn to do things better. Except maths. Once you do the maths right, that’s about as far as maths can go. Your thing equals the right thing and then you win. Maths is pretty boring like that. Which is why I like stories much better.

As an added bonus, I had the pleasure of meeting Michelle from Living With Bob (Dysautonomia). It’s wonderful to meet internet friends in real life! Us bloggers with chronic pain and illnesses rarely get the chance to do so on account of that involves at least two of us being well enough to leave the house and socialise on the same day, a phenomenon with a similar occurrence rate to solar eclipses. I guess. Let’s not pretend that I know anything about solar eclipses, I just assume they’re really rare because the sun doesn’t disappear from the sky that often. Except at night, but we’re eclipses, not sunsets. We’re special.

Michelle Roger and Hayley Cafarella


It was lovely to go and talk about writing with other writers, it made me feel more like one of them. In spite of having to work around constant pain and setbacks, I feel very strongly that it’s important for my sanity that I keep writing. Social events like workshops can be great for getting re-inspired or finding a new perspective on things. As someone who is often secluded from the world, I have some inside knowledge about how important it is to get out and experience different things whenever possible. I will share it with you now: VERY VERY IMPORTANT.

I also think that learning in general is very important. For this reason, I have started one of those free, online university courses. You know, the ones that pop up in your social media feeds and guilt you into feeling like you don’t try hard enough at life. I thought I’d try one of those. I want to put new stuff in my brain and I don’t have the funds or functionality to attend actual classes of any sort right now. I’m learning about neurobiology, because aside from being relevant to my every day life, it’s just plain interesting to me. I’ll let you know how I go…

And that’s it from me, for now. I shall now get back to the business at hand, or, to be punny and specific, in my hands. That business involves trying to figure out what temperature it is and how much swelling and pain determining such things requires. CRPS is the mystery that just keeps on giving. It’s a mystery that’s bigger than today. Which makes this whole paragraph a fancy way of saying that I’m going to stop writing and watch TV.

Love & I Have Returned Hugs,
Caf

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  • Finding Out Who My Real Friends Are

    Dear Audy,

    When I first developed CRPS and started interacting with the online chronic pain community, I remember one warning that was broadcast repeatedly from many patients who had been playing this pain game longer than me: “You’ll find out who your real friends are”.

    Click image for source.

    Click image for source.



    This seemed like a rather strange prediction. Would my friends not like me any more because I am sore? Because I can’t do all the things that I used to? Because I was suddenly about to sprout three heads that would incessantly mock everybody in singsong harmonies?

    What’s a “real” friend anyway? At the time, I hadn’t yet developed relationships with any personalities that I’d imagined and projected onto inanimate objects. Sure, friendships exist in different degrees, but I wouldn’t have labelled any of mine as “fake”. I mean, I wasn’t in high school, I think that the days of tribes of girls wanting to befriend me for my gorgeousness and popularity were already behind me.*

    And so, I journeyed forward through my chronic pain, preparing myself for the revelation of who my real friends were. I kind of just hoped that when they appeared under their halos, I would actually like them too. Obviously, I didn’t want to be friends with no losers. Or, you know, boring people.

    Nothing changed for a long time. My CRPS progressed, my incapacitation increased and I was forced to start wading in the murky waters of mental coping. I kept an eye on them, but none of my friends vanished unexpectedly. Of course, that doesn’t mean that some friends didn’t flow out of my life on the currents of change.

    Transient friendships always end that way. They were never meant to last forever.

    Friendships are formed through situations, interests, or any sort of activity that groups people together. Eventually, people get new jobs, or they move away, or they get interested in new things. Often when circumstances change, friends drift apart and float away into the next chapters of their lives. These endings don’t mean that the friendships weren’t real, they’re just a part of life in a world that’s always changing.

    The ending of a transient friendship can feel confusing if one friend is moving on and the other is stuck in place by illness. Shifting from living a regular life to a painfully restricted one is a tough adjustment. It can seem like the whole world is just passing by and feeling left behind can hurt like a bitch.

    It’s not just transient friendships that change. Friendships that span years and lifetimes are also changing along the way. Those deeper friendships exist because the friends have the ability to ride the changes together, to adapt to one another, to accept each other as growing, living beings. Old friends often find themselves distanced from one another and then really close and then distanced a little again. That’s how life goes. It can just be hard to see this when it feels like all of the good things happen to the friend that isn’t you.

    Navigating our own minds can be difficult. Sometimes, feelings are really big and it’s not always obvious why we’re feeling them. It can be easier to blame that friend that never visits for the fact that we feel lonely and sad, rather than accepting that the sadness is coming from how we are coping with our personal situation.

    Sometimes, sadness just needs to run its course, it’s no one’s fault.

    There are some friends that I kept in touch with for a while after developing CRPS, until our lives took us further apart. There are some friends that I simply never saw again. There are some friends that I catch up with rarely and there are some friends that I’ve remained close with. There are even a few new friends.

    At some point during the years that I have been learning to cope with CRPS, I have felt betrayed by each and every one of them. You see, there are a lot of things about chronic pain that can make a person angry and anger is always looking for someone to blame.

    When I felt isolated and cut off, I often felt angry at people for not visiting rather than angry at the disease for keeping me locked up. I felt angry that nobody was showing up to make me feel better. I felt like their absence meant that none of my friends really cared about me, or cared that I was hurting. I felt like nobody even wanted to understand me or what I was going through.

    I felt a lot of things that weren’t fair on anybody.

    I cried and I cried and I cried…

    It took me a long time to figure out that there wasn’t a bad guy. I felt so alone and I was stuck at home, surely the onus was on my friends to come to me? Maybe in a sitcom world, but not so much in this one.

    Because people have lives. People are busy and imperfect and are usually trying their best at life. Sometimes, people are overwhelmed when confronted by illness, or confused about what to say. Sometimes people stay home because they feel anxious or insecure. Most people have a whole lot of things going on that have absolutely nothing to do with the friends that they care about.

    And friends are people.

    Eventually, I became aware that I was spending a lot of time hating the people that I love for no valid reason at all. Nothing that has happened to me in terms of my illness has been their fault and maintaining my happiness is not their responsibility. I have different sorts of friendships with different people and it’s OK that they aren’t all the “bring roses to your sickbed” type of friendships. I mean, too many of those would make them a little bit less special now, wouldn’t it?

    I had to let go of needing other people to make me happy. I had to let go of wanting to be needed. I had to let go of craving approval, or inclusion, or whatever it was that I thought my friends should be providing for me. I had a lot of forced quiet time last year and once I was done raging about it, I used that time to observe my thoughts and disregard any that were not helping me to be a happier person.

    I decided to remove the obligation from what I understood friendship to be. I stopped paying attention to angry thoughts about other people and acknowledged that if I felt angry, it was coming from within. I refused to be annoyed at people for literally doing nothing. It was never their fault that I thought they should be doing something. I mean, what sort of queen did I think I was?

    I stopped creating expectations for friends that they were unaware of and focused on enjoying whatever aspects of a friendship were available to me.

    Life got a whole lot more enjoyable after that.

    Now, when I feel upset, it’s easier to figure out what I’m really upset about without a bunch of blame and anger blocking my view.

    It’s easier to spend a lot of time alone, now that I’m not blaming anybody for it. In fact, I think I quite enjoy having plenty of time to look after myself and reflect on things. It’s easier for me to recognise the friendships that were only ever going to be transient, whether my illness had happened or not. It’s also easier to recognise that all of the anger and hatred directed at my friends was only ever happening inside my head. It was only ever hurting me.

    Most delightfully, it’s easier to appreciate my friends, all of them. The long-lasting ones and the short-termers. The share-everything-with ones and the casual-joke-partners. The see-regularly ones and the only-catch-up-with-occasionally ones.

    I guess that CRPS has taught me who my “real” friends are, just not in the way that the warnings implied. All of my friends are real, there aren’t any mannequins in my contacts (sadly). Some of the friendships run deep and others barely scratch the surface and that’s OK. Some friends are utterly amazing at cheering me up when I’m down and others aren’t and that’s OK too.

    Some days I’ll get overwhelmed and angry and have to remind myself about these important realisations about friendship all over again. And that’s OK too.

    I guess the whole point is that nobody’s perfect.

    Love & Fluttering Cheek Kisses,
    Caf

    *Might never have happened.

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  • What If Desperation Can Transform Into Temporary Strength?

    Dear Audy,

    The wedding…it was beautiful. I’m so thrilled for the stunning bride and her equally stunning groom. I wish them nothing but happiness in their lives together.

    My body…it survived. I threw away everything that day, all of the stress and cares and inabilities. I chucked the woes aside and I danced with my arms above my head. I put my hands in the air like I just didn’t care because of that fact that I did care. I cared very much about having the best time that I could and celebrating such a wonderful day.

    It’s hard to explain how I got through such a big event when, so often, I can hardly get through a day at home.

    I was watching The Walking Dead over breakfast this morning, as you do, when I realised a possible explanation for how I sometimes manage to physically push through an important event that just won’t be repeated.

    I was watching a character running for their life (no spoilers, I promise). Running through pain, stress and confusion. Running fast, propelled by the promise of imminent danger. People can do some pretty incredible things when they are threatened. That flight or fight response can create instant energy in a lethargic body. Our survival instinct understands that a threat is not going to wait until we are feeling well before attacking.

    Not the image that inspired this line of thinking, but you get the idea...

    Not the image that inspired this line of thinking, but you get the idea…



    What if that instinct, that power to flee, that fire to fight…what if that can be harnessed and used to overcome less life threatening obstacles? What if desperation, in different forms, can tap into the primal desperation for survival?


    I am no stranger to feeling desperate.

    These days, I am so desperate to enjoy any sort of event or activity that I won’t wear my sad face on such occasions. I’ve spent quite enough time at home feeling sick and sad over the past six and a bit years, I’ve learnt a thing or two about feeling pain without showing pain.

    Don’t be fooled because you remember my bearded performance as Lord Montague in that high school production of Romeo and Juliet, I’m an amazing actress. I have to be, I’m trying to fool myself and I’m a tough audience. You see, anytime that I’m not scrunching up my face, or falling to the floor, or sobbing hysterically, or making that absurd wailing sound that I’m fairly sure means that I’ll become a banshee when I die… anytime I’m not doing that I am acting, to some degree.

    Chronic pain doesn’t take breaks. Sure, it has an unpredictable ability to fluctuate in intensity, but it’s never gone. When I appear well, it’s usually because I am coping well, rather than actually feeling well. When we are having a good time together, you usually won’t see my pain until my body reaches the point of no-functiony-collapsy-exhaustion.

    My last blog post was on the topic of feeling empty. Maybe, the desperation to fill that emptiness with something, anything at all, maybe that helps to allow me to summon extra strength. It’s not a singular driving force. That particular sense of desperation is accompanied by the desperation to not miss out on all of life’s wonders due to CRPS and also by my constant desire to still be me, to still do things that are an expression of me as a person and a friend, not just a sick person.

    I’m still in here, somewhere.

    Perhaps, sometimes, overcoming is simply a matter of different streams of desperation, combining and combusting. The explosion lights up my darkened mind like a flare in the night sky, rejuvenates my strength like a sugar overdose in a toddler. Much like the toddler, I will collapse afterward. I will spend days, weeks, even months recovering from the physical ramifications of the emotional blast.

    Much like the person fleeing zombies, my body will give out the moment that I am safe. At the end of the party, at the end of the thing that I’ve wanted to enjoy, I will shut down, pain will skyrocket and probably there will be a flashing empty battery sign on my forehead. If I’ve had myself a soul replenishing good time, I usually wear this collapse with a slight smile of pride (provided that I’ve sustained no infectious zombie bites).

    And so, maybe, that is how I managed to have such a lovely weekend for my friend’s wedding, despite the fact that I’ve spent most of this year flailing about and struggling for breath. Aside from this one, magical, weekend, I’ve been feeling overwhelmingly useless. Coping with pain flaring has been more of a struggle than usual and coping with life stresses has seemed like an unobtainable illusion.

    Coping? What’s coping again?

    I want my mojo back and I’m going to have to trek some hard yards in order to get it. Such journeys always start with the smallest of steps, little itty bitty things that allow me to feel even the tiniest bit of control over my mind and body.

    I have to practise my relaxation techniques and increase the amount of time spent doing Feldenkrais and physical rehabilitation exercises. I have to try to reconnect with life, friends, my writing and figure out some goals that are achievable. I have to expose myself to information that is inspiring, read the work of writers that I enjoy, follow my interests and (most importantly for my daily sanity) filter my social media feeds and interactions to only include people and things that don’t leave me feeling negative or drained.

    How do you get through important events, Audy? What do you think about my theory of combusting desperation?


    Love & One of those itty bitty steps that I mentioned,
    Caf

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  • How To Treat A Friend Who Lives With Chronic Pain

    Dear Audy,

    Day 18 of NHBPM has me thinking about what advice I’d give to someone caring for a patient with my condition (Complex Regional Pain Syndrome). I’m going to ponder this prompt from the perspective of caring for a friend or loved one with CRPS, rather than from the perspective of a practitioner treating a patient.

    Every person is a little bit different from all the other people. Each person with CRPS is unique and the way in which one person likes to be treated might not be alright with another.

    Having a friend who lives with CRPS can be challenging. Their symptoms fluctuate frequently, are unpredictable, and the differences in their capabilities can alter drastically in short amounts of time. There are things that you can do to help a friend who is living with chronic pain and other things that it just helps to know.

    Disclaimer: no part of this blog post is intended as judgment on anybody other than myself (there’s this bit further down where I had a bit of a realisation).

    Maintaining relationships through chronic illness is a triumphant thing.



    Things that it helps to know when a friend or loved one lives with CRPS:


  • Educate yourself about the condition.


  • CRPS can be hard to explain, for both doctors and patients alike. The headlining symptom of CRPS is severe chronic pain. Over time, chronic pain causes changes to the brain and nervous system that can result in many whacky symptoms on top of the pain. CRPS can effect mobility, cause swelling, effect blood flow, cause changes to the skin and hair, effect perspiration and permeate into every aspect of a person’s life. Click here for a detailed description of CRPS.

  • Develop an open attitude toward learning and understanding the new needs of your friend or loved one.


  • When it comes to caring for somebody with CRPS, it’s important to remember that the severity of their condition is always changing. “How are you today?” is never a redundant question, no matter how many times you’ve heard “really sore” in response. Allow your friend or loved one a chance to explain anything that might help you to help them, at that time.

  • Never make assumptions about what a person with CRPS is capable of doing.


  • CRPS is constantly fluctuating, it’s not helpful to assume what I can, or should be able to do at any particular time. Sometimes I can walk, sometimes I can’t. Sometimes I can use my hands, sometimes I can’t. Sometimes I can drive, sometimes I can’t.

    People can often feel like they should already know things without ever having learnt them. Fear of asking a “stupid question” stops a lot of people from finding out the things that they don’t know. When it comes to asking about another’s capabilities, fear of crossing an intimacy line can also get in the way of open communication. Asking about health can feel like prying.

    CRPS effects everything that I do and when those activities involve other people, it effects them too. I can’t speak for others, but personally, it’s OK to ask about my health when considering future plans or even during current events, because it is relevant.

    I’d much rather smile and say, “No, I’m fine”, than to not be fine and struggle to find the words or courage to tell you that. It can suck to be an unintentional party pooper, but that can be made a little bit easier if the other partygoers are aware that my health failing is a possibility.

  • Beware of the brain fog.


  • A person who lives with CRPS has a brain full of signals that are zapping around in useless circles. Sometimes, these signals get in the way of regular thinking, kind of like trying to have a conversation at a rock concert. This doesn’t mean that a person with CRPS is any less intelligent than they were before they developed CRPS, it just means that it can be more difficult to get our brains to work around the constant malfunctioning. Brain fog can also be the result of, or exacerbated by, medication.

    When I am experiencing brain fog, I’m easily dazed and find it hard to take in new information. I struggle to find the right words and take the Freudian slip to a whole new level of almost-nonsense. You’re unlikely to see me during a really bad flare, however my lovely prince is often privy to my brain fog stutter, which is what happens during a sudden pain spike and involves my face scrunching up as I try to say any words at all.

    In my experience, it’s not a good idea to have important discussions when feeling particularly foggy, those can end up as arguments for no good reason.

    Things that you can do to help a friend or loved one who lives with CRPS:


  • Offer to visit, or take your friend on a low key outing for a few hours.


  • Socialising is a tricky thing when forced to factor in CRPS. Many people who live with chronic pain can’t drive, or can only drive short distances. Many can’t cope with public transport due to travel times, unpredictability, vibration and the perils of being delicate whilst in a crowd. Travel limitations can easily get in the way of friendships.

    Inviting people to come and visit can seem like hard work after years of living with chronic pain. Personally, it can feel like asking for charity, like begging for friendship. This is because I don’t have the ability to reciprocate the (much appreciated) effort of a visit.

    It can also be difficult to determine a time that is “free” during which I can arrange a lounge room chat-date. I recently wrote about how it can be difficult to take time out from doing very little. Making plans involves designating future time and time can be hard to find amongst all the pain managing.

    (This stuff might be news to you; this stuff is probably news to you. I’ve never really written about this before, not that I can remember)

    I usually want to see you, I just don’t always have the presence of mind, or resilience to possible rejection that’s required to organise a get together. Asking you over for a drink and a chat doesn’t seem like a particularly alluring invitation, which is a bit nuts because being on the reverse side of such an invitation sounds totally awesome.

    (I might have issues, friends, I just might)

    I felt bad taking your friendship, because I felt that I didn’t have anything to give back. I wasn’t recognising my own friendship as a thing, I was just seeing the practical and physical things that I can’t do. I couldn’t see past the effort that I was asking from you in asking you to come to me. Look, I’m either being silly or I was being silly, it’s hard to tell.

    (Aaaaand, this is why blogging is the best therapy that I know of. This was not planned, this little epiphany…they never are. Do you know me well enough to have my phone number? Please consider yourself invited over for coffee and a chat, text me, we’ll hash out the deets)

    There are so many people that I’d love to hang out with more often, if only I had to ability to go to them and, you know, if I could tolerate doing things more often. I’m going to try to not let my give-and-take issues get in the way of me asking you over anymore, please remind me if I forget.

  • Bring food.


  • Seriously, bring food. You know how in American soaps and sitcoms, neighbours are constantly showing up with food after bad stuff happens? That is an awesome thing. Grocery shopping and cooking are sometimes too physical for me to handle and I need help. This is fine when I have my lovely prince here, however sometimes I am alone and it’s not fine at all.

    Being an adult and asking somebody to come and feed you is not the easiest thing to do. I was having a hard time not that long ago and a friend texted to tell me that she was on her way, that she was going to cook and what did I need from the grocery store? It was basically the best thing ever. She cooked two healthy dishes that kept in serves and fed me for the next few days.

    It can be demoralising to not be able to take care of my own personal needs. Friends who understand this and help without being asked are utterly amazing. This isn’t an indictment on any of my friends who have never fed me, this is just a cool story about this awesome time that one did.

  • Consider transportation when inviting out a friend who has chronic pain.


  • It’s always so nice to receive invitations, however invitations that come with a personalised effort to check into whether or not I have transportation, or will need assistance to attend, are that little bit more special. It sucks to have special needs, but I do have them.

    It can be disheartening to have to rely on others for transportation, or to have them literally push me around in the instance that I need to use my wheelchair. I can’t manually operate a chair because I have CRPS in four limbs and I don’t have thousands to spend on an electronic wheelchair when it’s only for occasional use.

    Asking for this sort of help from friends can make me feel like a burden and often adds extra stress to my attempts at getting out and socialising. A couple of good friends really understand this, they offer me rides when they know there’s an event I might like to attend, they offer me their muscles and elbow grease to get me up and down ramps, they go out of their way to pick me up or drop me off. I appreciate their generosity and effort oh, so much, but it’s still hard to ask for it.

    Chronic pain chips away at independence and that’s a hard thing to lose.

  • Be understanding if your friend has to cancel plans at the last minute.


  • At some point, a friend with CRPS is probably going to cancel plans with you right before they were about to happen. This is because of the unpredictable nature of our condition, we can go from functioning to invalid in the space of minutes.

    Please try to remember that it’s not you, it’s not even me, it’s CRPS.

    It doesn’t feel very nice when people cancel on you at the last minute, I’ve experienced that myself and I hate that my health frequently forces me to be that canceller. It also doesn’t feel very nice to miss out on so many things, to have to stay home instead of going out and having fun. Neither sides of this coin are pretty; please try not to blame your chronically ill friend for not turning up to things.

    There’s an extra step that you can take here if you want to be sure your friend knows that you understand and still value them: tell them so. A text message along the lines of “I’m sorry to hear that, maybe we can catch up another time?” can leave me feeling less stressed about cancelling plans than the echoing silence of no reply.

    My condition mimics the nature of a dodgy friend. If I’m cancelling plans, I’m weak and probably a little bit emotional. It’s easy for me to feel excessive guilt over this and a little note that lets me know that nobody hates me for not turning up can help far more than I feel like it should.

    It’s my responsibility to take care of my own guilt (that’s why the “should”), this is just a tiny thing that friends can do that happens to help.

  • Send a text, or respond to a social media message.


  • This is the easiest one. This is the absolute easiest way to be a good friend to somebody who lives with CRPS: Simply let them know that you care.

    I spend a lot of time by myself and when the pain is bad and not much is changing, it can get lonely. Getting messages helps me to feel connected, even when I don’t have the strength to reply to them.

    I blog freely, so when I’m having a rough time, there is usually something on the internet about it. It helps to have people read and respond to what I write, even if that response is just a thumbs up, just a little sign that a friend was here. It can be hard to know what to say when your friends are feeling awful, but a simply “x” or “o” can really go a long way toward letting somebody know that they’re not alone, that they have been heard.

    The key to all relationships is communication.
    It’s a cliche for a reason, just like most cliches are.


    There are those who believe that a life with chronic pain or illness is too complicated to also include romantic relationships, or even friendships. I disagree, both intellectually and through how I live my life. I have fabulous friends, wonderful family and an amazing partner and I’m so grateful that they still want me in their lives, damaged or not.

    Do you have amazing friends too, Audy? I’d love to hear about the things that they do, or could do, to positively influence your life with chronic pain.

    Or, did you use to have some less than amazing friends? I’d love to hear those stories too, sometimes it’s easier to learn from mistakes than miracles.


    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 & Beaded Friendship Bracelets,
    Caf
    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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  • So exciting to be out at a pretty winery! Also exciting to have my smile back :)

    Seeing Light Again

    Dear Audy,

    This past week, I finally started to feel more like myself again. More like that person that doesn’t get rattled so easily, that pushes through challenges and excess pain. More like that person who isn’t a miserable wretch.

    I like her much better.

    Yay! Excuse for make up and nice clothes!



    I have some super dooper friends to thank for helping to pull me back from the edge. It went down like this…

    I was prepared to let my birthday pass unmarked, but I was really sad about that. After wrestling with some anxiety fuelled distractor thoughts, I think I’ve figured out what was happening up here in my thinking coconut.

    I did want to celebrate. I did want to see friends and get excited and feel happy, but I simply didn’t feel up to it. After months of health backsliding, I didn’t feel physically or emotionally capable of celebrating anything at all. I felt so black, that I didn’t think anybody would actually want to come and celebrate with a miserable person. I felt all the friendships that have faded, and those that seem like they’re slipping away and I felt helpless.

    I stared at my life and I only saw the failings. I predicted a future in which my life continued to descend into darkness, loneliness and pain. I let go of my victories and in return, they abandoned me. I got caught up in anxious circles, faded feelings and the rising, insistent sensation of grief.

    I lost myself a little, but not permanently. It’s a really good thing that I can’t actually predict the future.

    When feeling bleak, it can be tough to try to summon the courage to talk to people, even when you know they simply want to care about you. Depression is rarely a logical thing.

    How we feel about things is ultimately up to us, but sometimes lost people need a little help to get back to the path. I’m so grateful to the friends who helped to guide me this week.

    Thank you, Mum, Dad and Tim.

    Thank you, Michelle, for getting me through the big day. Thank you, Stef, for helping me realise that Skype is good for not-so-distant catch ups when any distance is too far. Thank you, Jen & Marg for putting in such effort to come and take me out. Thank you, Melissa, for a delightful country outing and always, always supporting me, and for the next paragraph.

    Thank you to the amazing people who didn’t know anything about me other than it was my birthday and I was sad, yet took the time to send me cards and kind words by way of Melissa. You are all amazing.


    So much love from strangers.



    Thank you to all the friends who called and texted.

    Thank you to you, Audy, whom I can’t mention individually for fear of missing somebody. Thank you for your supportive comments, your Facebook and Twitter love, your messages, your sharing. Thank you for your patience when I take weeks to get into a replying headspace.

    Thank you all for not giving up on me.


    I’m not giving up on me anymore, either. I’m digging out of this hole, one moment at a time. One decision at a time. One thought redirection at a time. One action at a time.

    One breath after another.

    So exciting to be out at a pretty winery! Also exciting to have my smile back :)



    Love & Gratitude,
    Caf

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  • Driving Past Limits And Through Lessons

    Dear Audy,

    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?


    Love & Left Hand Turns,
    Caf

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  • In Review: Lissie, Live at Northcote Social Club, May 19th 2011

    Dear Audy,

    Lissie has been enjoying high rotation on my mind-radio thanks to the fantastic performance that she put on last Thursday. I simply love going to see live music and the atmosphere of a pub gig is a lot more to my tastes than joining an enormous audience in an arena.


    (source)


    Lissie played at Northcote Social Club, which is one of my favourite venues. Especially when I am forced to go out in my wheelchair as it is easily accessible from the street. The staff are pleasant and helpful and the crowd usually has no problem allowing a space in the front so that I can see.

    Of course, occasionally people will push in front and block my view with the amazing recording that they are making on their mobile phone, but I am not shy about tapping people on the shoulder and asking that they please not do that in front of my face. I was amused and appalled by a few elements of the audience behaviour at this and other recent gigs…but that is another post for another day. Probably a post like this old fave.

    Getting back on topic, Lissie was fabulous! She was friendly and funny with her stage chatting, an element that not all musicians are good at but that can add a lot to a show. Her refreshingly laid back appearance and demeanour acted like an invitation for the audience to kick back and, to quote whoever said it first, dance like youtube was never invented.

    The atmosphere in the room lit up, fuelled by the electric energy that Lissie generated on stage. She is far from a shy performer. Her vocals are powerful, interestingly melodic and emotionally raw. She sings as though she is putting her all into that moment, into every moment on stage, and the result is far more powerful than when musicians attempt to recreate the exact sound that their music has in its released recording.

    When Lissie is performing, she glows. You can feel how much she enjoys what she’s doing flowing out in waves over the audience. It’s this feeling that I go and see live music for, that magical element that can’t be captured, only enjoyed in the moment.

    The setlist was a mix of songs from her debut album, Catching A Tiger and a few covers. I wish that I could find a copy of the exact setlist as one of the covers was the highlight of the evening, it was just so much fun! Lissie introduced it as a song that she had heard around the place a lot, she did mention the title and artist, however those details have completely escaped me! If you happen to know the song I am loving and not remembering, please leave me a comment and fill my memory gap.

    Other highlight songs included When I’m Alone – her most well known track, Record Collector – a lot of fun to rock out to, In Sleep – one of my favourite tracks from the album, and The Pursuit Of Happiness – a cover that also appears on her album.

    Lissie and her band are on their way to Canada, if you happen to be in the vicinity and like to like music, then definitely get yourself tickets and go along to one of her shows.

    Overall, the night was a lot of fun, even on two wheels. I caught up with some friends that I hadn’t seen for ages, including my blogging buddy, Carly, who introduced me to Lissie’s music a few weeks ago.

    It’s easy to get frustrated at having to go out in a wheelchair when I rarely need it anymore, but it’s a much better alternative to going without it and getting hurt before I even get to the venue, or not going out at all. I have gotten over feeling like needing a mobility device is a step backward, it’s just a part of unpredictability of chronic pain and not worth putting much emotional stock in. Thankfully, I have nice friends who will push me!

    I got to enjoy a night out without interrupting the healing of my injury. That is total win.

    Love & Living
    Caf

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  • When Good Gigs Go Bad

    Dear Audy,

    Not all crippled adventures are inspiring, in fact, they can be rather disheartening when they go badly. I don’t like to dwell on the darker parts of life, however the aim of my blog is to share my experience of life with chronic pain realistically and that includes the adventures that don’t quite work out. In truth, those are probably the ones that I learn the most from.

    On Friday, a good friend asked if I would like to go with her to see Gypsy And The Cat perform that night at The Palace in Melbourne, which used to be that hideous Metro nightclub. I was feeling amazing from having kept to my routine all week, I was also rapt at the thought of going out to see a band and (most of all) so excited that I was getting back to being capable of going out for the purpose of fun rather than a medical appointment.

    This isn’t a review of the performance, all I will say is that they are a pretty rocking two thousand and teens version of a nineteen eighties sound. Had I been well, I am sure that I would have enjoyed dancing and bopping along with them.

    I (carelessly) didn’t put a lot of thought into how I would cope at the venue. I had been to The Metro many, many moons ago and I knew there was seating in the upper tiers. I figured that we would be able to sit there and watch the show, no worries.

    This pic shows the levels of seating, I was sitting in the front row of the upper level.


    (source)


    We were enjoying the support act when it happened. All of a sudden there was a bunch of people standing in the small space between our seats and the balcony rail in front of us. Unlike most theatre balconies, this rail is chest height and the venue clearly had no problem with people cramming up against it.

    Resistance was futile. Yelling at the people who stood there worked for a while and mocking their stupid outfits helped ease the annoyance a little, but it quickly became clear that people were going to block our view no matter what.

    The audience was mostly young and let’s face it, young adults en masse are overpoweringly obnoxious (I was). One girl literally climbed over me to stand on the seat next to me and speak to people on the level above us. She was wavering around above me while I squirmed, trying not to get stepped on and hoping that she didn’t spill her beer on my head and force me to throw her scrawny ass over that extra high balcony railing.

    Thankfully, my friend was able to grab the rail space just in front of us and played “sorry this space is taken” until Gypsy And The Cat came on. Unfortunately, by that time I was unable to even contemplate standing to see the show.

    Pain was skyrocketing. It was hard to tell if this was simply from being out, the driving, the hard seating, the loud music, the frustration or simply the energy generated by so many excited people being crammed into one space.

    I tried to enjoy the music. I tried so hard not to be annoyed, to let the excess energy flow out of me, to not feel suffocated by the stifling atmosphere, to not feel personally offended by people who are simply ignorant of the fact that I’m in a lot of physical pain even though I look normal.

    I tried not to be angry at the entire audience for allowing a guy on crutches to traipse all over the upper level of booth seating with no one having the decency to give him a seat. I don’t know if he was disabled or injured, however I was uselessly outraged on his behalf. I was even annoyed that I couldn’t just give him my seat.

    I tried to accept the situation as it was and still enjoy myself. I tried to concentrate on listening and seeing what I could of the show between the butts of the people in front of me. Sometimes I could see the lead singer, sometimes the keyboardist…but always butts. I feel like I never want to see the rear end of a human being again.

    The thing that was most annoying? Being annoyed. I have been practising meditation for some time now and done a lot of reading about Buddhist theology, which I have found really enlightening. I can understand that no matter what happens, it is possible to remain calm and control my reactions. An emotion is just a reaction to thoughts, after all. Frustration is just an emotion.

    Just an emotion.

    No matter how irritating I found the situation and the people, I am the person responsible for my own reactions and emotions. Just me. The good thing about being responsible is that I can improve it. This particular gig on this particular day was too overwhelming, however that doesn’t mean I should stop trying to go out or that I should expect to never be able to enjoy a crowded gig again. All it means is that I had an irritated evening and that I have a long way to go before I am any sort of zen master.

    Like most unpleasant experiences, this one came with lessons:

    1) The Palace is not a chronic pain sufferer friendly venue. I thought I would be able to walk in and sit down – not the case. Were I to get over my disgust at the place enough to want to return for another gig, I would need to go in my wheelchair.

    2) It’s easy to lose my ability to accept and control my emotions when in a crowd.

    3) I need to contact any venue that I am planning on attending for the first time and ensure that my needs (to sit and not be stepped on whilst being able to see the show) can be catered for.

    4) I can recognise where my own coping skills failed me and allowed me to move from annoyed into upset. Awareness of this will help me to cope more effectively the next time I am in an uncomfortable situation.

    So, it wasn’t a total loss.

    Plus, my friend had a really good time and as it was her love of the band that had us there in the first place, so that was great to see! I can’t stand the idea of my difficulty controlling my emotions about my disability ruining someone else’s good time.

    I have tickets to see Lissie this coming Thursday. Northcote Social Club is usually pretty nice about giving me a chair to sit on, so hopefully I will get to see the show without trying to peer through people’s legs. I have been listening to and loving her album since I read Carly’s review of her performance as the support act for Megan Washington. I would describe her sound as a kind of Sia/KT Tunstall blend with a little spice of Liz Phair. I am sure the show will be a ripper!

    Love & Learning The Hard Way,
    Caf

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  • Winning At Having A Weekend

    Dear Audy,

    I am currently feeling the toll of what was a very big weekend in my world! As well as the Eddie Vedder concert on Thursday, I went out for more music on Saturday night. This was a last minute plan as a friend had an unexpectedly spare ticket to see Bonjah at Northcote Social Club.

    I won’t go into the whole review thing for that gig, it wouldn’t be fair. My friend and I were both extremely tired and suffering from a serious case of the vagues.


    I still have vague face.


    We went out for pizza beforehand and by the time the band took to the stage at 11:20pm, we were already thinking about the wonderful comfort of our respective beds. Probably not the best frame of mind for getting into the reggae groove. It wasn’t a bad night, the band was entertaining, I always like a super-percussion guy or gal (i.e. person who plays a whole bunch of bangy type and often obscure instruments) and we did have a little boogie before flaking out before the end of the set.

    I must admit, it was nice to be able to have a little groove before my body said, “You sit back down. You sit back down NOW.” I’d decided to give a standing gig a trial without asking for a chair, so it turned out to be lucky there are a couple of benches at the back of this venue! I am not strong enough to stand for a couple of hours, but hey, I gave it a good go.

    I was also still able to drive home afterward, so I am calling the night a win.

    I am trying to keep in mind that I don’t need to fear flares; to remember that with Feldenkrais, I have a way to manage them. This mindset makes surviving pain in the moment a whole lot easier. In the past, I would start to worry when I began to get sore from being out. I’d envision myself trapped on the couch for a week trying to recover, I’d unhelpfully imagine those unbearable levels of pain that my body is capable of going into.

    All of that worry used to set off the negative kind of self-fulfilling prophecies. It also used to take the shine off of whatever I was out trying to enjoy. It’s wonderful to be at the point where I can be in pain, understand that the pain will be increased by an activity, yet still enjoy that activity in the moment and not resent the pain for existing afterward, nor myself for having set it off. It’s impossible to move forward in life if I don’t push my own boundaries.

    Being calm about things actually helps to keep the flares at lower levels and the recovery time to a minimum. This was a lucky fact over the weekend, as Bonjah wasn’t the end of my adventures, I still had a family reunion to attend on Sunday!

    Getting up Sunday morning was tough…but I did it. I had gotten about four or five hours sleep. I knew I wasn’t going to get moving by the time my parental ride was leaving, so I quickly decided to handle driving myself and leave a bit later.

    A few months ago, I never would have felt confident enough to drive after a few busy days. A great feeling of freedom helped to motivate me to get in the car and get to the event. It was nice to spend some time with the extended family, many of whom I hadn’t seen in years. They had done things like turn into adults, which is always a little mind-blowing.

    Naturally, I am sore, blah-headed and exhausted today. Thankfully, I don’t have to do anything other than recover. Well, recover and acquire coffee beans…I had to drink instant coffee this morning and this does not make my taste-buds sing, it makes them whine and grimace whilst caffeine addiction fuels the pouring of this foul substance down my throat.

    Most of the day has passed and I have done so far is lazily read blogs and internet fiddle. I’m pretty happy with that. My plans for the rest of the afternoon include some Feldenkrais, to help get rid of some of these niggly aches and pains, and also a good long soak in the bath tub. Probably a nap, too, I mean, if I’m thinking big…

    Yesterday, a three-year-old said something that hit a note with me. I love that I never know when or where inspiration or understanding will strike. I’ll ponder the little lesson that he reminded me of and write to you again soon…

    What did you win at this weekend?

    Love & Snooze Now,
    Caf

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  • The Fanciest Of Fancy Dress Parties

    Dear Audy,

    Oh my, I have so much to tell you! I have been a little absent from blogging lately, on account of that I have been out having an actual life. Yes, off my couch!

    There are many things that I want to share with you; adventures I’ve had, books I’ve read, plays I’ve seen, progress I’ve made…things have been looking up and that’s definitely cause for celebration.

    Speaking of celebrations, today I wanted to share some pics from an amazing one that I attended last week. My friend Melissa celebrated her birthday in a rather unique way; the fancy dress theme was the 18th Century, the music was a fantastic mix of 1980s pop. Cleverly, she asked her guests to forgo gift buying and instead put that time and effort into their costumes. The result was amazing.

    I arrived to a room filled with colour, wigs, bustles and feathers. Many guests had hired spectacular costumes, some so fancy that I was not surprised to hear that one costume hire place had only recently acquired them from Melbourne Theatre Company. The decor was superbly fitting, mauve curtains, old fashioned seating and chandeliers. Melissa even had a Marie Antoinette inspired tier of adorable petite fours and a cake with icing grand enough for a queen. Which was fitting indeed, considering how stunning she looked.


    Photo by Dan O’Brien


    Me and the beautiful birthday girl:


    My dress is the result of op-shopping, imagination and my mother’s hard work. She sews super fast – adding all that trim would have probably taken me six months to do on my own! Thanks, Mum.

    I did my own hair, which was an adventure that started the night before with a bunch of curlers. I haven’t used those since I was a little girl! They did the trick though and I was rapt with the final result. I tried not to go overboard, but whitened it a little using the old theatre method of talcum powder and hairspray.



    My prince’s costume was the result also put together from thrifted pieces. I am most proud of his wig, which was a crazy rockstar mullet when we bought it home. I managed to work in some 1700s curls and a ponytail, which ended up with me thinking he rather resembled Gaston, from Beauty and the Beast.


    Photo by Dan O’Brien


    The night was wonderful. We drank wine, chatted and danced as much as I was able. Thankfully it was the type of party where sitting on the side and watching is just as entertaining as being able to move around freely. I loved it! It felt like being transported into a movie scene. Hats off to Melissa, organising such an impressive event took a lot of time, effort and perhaps even a little magic…it was just that good.

    The following are some more gorgeous photos by Dan:







    Love, Corsets & Bustles,
    Caf

    P.S. You might have noticed that the site is looking a little different. I wanted to switch up my fairly simple theme for an even simpler one. This one has lovely fonts and is easy to navigate. I have some more page updates in the works, but I mostly wanted my blog’s appearance to focus on the part that’s most important to me – the actual content.

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