Thank you so much for your support regarding my issues with Dr. No Ears. I can’t help but say that it troubles me greatly how many of you have had similar experiences, nobody should be allowed to practise medicine when they are merely a certified bully! I am working my way through replying to your wonderful messages.
I’m happy to tell you that I’m not doing too badly. I’m staying focused on treating my body nicely and strengthening it whilst the cooler weather is assisting me. I’m still having smaller flares, but nothing like the incapacitation I experienced during the final weeks of Summer. I think I’ve picked up a little of the bug that’s been infecting Melbournians, it’s knocked me out today. I’ve spent the afternoon reading blogs and catching up on other people’s worlds, it’s always a nice break from my own.
I’ve been babbling at the webcam again, I seem to go through phases. Looking back at videos from a year ago has really opened my eyes to the value of documenting my life in this way, it’s just so easy to forget things! Being able to see myself talking about life then helps me to remember what life was really like, without the black or rose coloured tint that memory tends to apply.
I’m a bit flared up right now, but still considering this minor in comparison to how bad it was just a week ago. I might have to constantly keep adjusting as I go along, but I think that I’m finding the right track back to being on the right track. Over the next couple days I have few appointments with some new physicians that I’m hoping can help me (to help myself), I’ll write soon and let you know how I go.
It’s no secret, to you, that I’ve been going through a particularly hard time lately. Last year I began working with a pain specialist to learn ways to deal with my pain, cope around it and strengthen my body to improve it. I entered an inpatient pain rehabilitation program that was highly beneficial, I learnt a lot about pain and how to physically progress without pushing myself too far. During the program I worked with a physiotherapist, occupational therapist, pain management nurse and psychiatrist.
When I commenced the program, the doctor explained that I would begin as an inpatient for intensive therapy, followed by outpatient appointments that would taper off, with the aim that I would eventually be able to manage my own pain without the appointments. Sounds like a pretty good plan, huh?
The day of my first discharge from inpatient therapy, I suffered a subluxation of my jaw and over a month later it was still not sitting properly in the socket and causing me incredible pain and incapacitation. On the doctor’s advice, I was readmitted to the hospital and underwent another two weeks of inpatient therapy, focusing on incorporating methods to deal with my jaw malfunction on top of methods already learnt to deal with CRPS in my arms and legs.
Upon leaving the hospital, I had outpatient appointments set up on a fortnightly basis. I missed one appointment due to intense period pain – if you’re female, you understand that this can be crippling on its own, imagine if your nervous system exaggerated this x10, let alone x100. The following week I twisted my pelvis and was unable to sit in the car to get to the hospital. When I called and explained this to the physiotherapist, she recommended that I book in to see the doctor again, rather than rescheduling the outpatient appointment with her.
After this, everything gets a bit confusing and messy. The same doctor who has a rigid spiel on balancing physical recuperation with mental stability advised me to speak to the psychiatrist to deal with anxiety issues related to my pelvic pain and the stress of losing my job. The psychiatrist recommended I take an anti anxiety medication (mirtazapine), however she also agreed that I was coping as best I could mentally and that there was no reason for me to have the physical therapy put on hold. During the next appointment, she told me that she had spoken to the doctor and gotten the go ahead for me to resume outpatient therapy and that the physio would call me to arrange the appointment. I received no call. At the next appointment with the psychiatrist, she was surprised I had not been called and phoned through the physio department to arrange this, once again telling me that they would call me.
I had begun suffering increased pain and swelling in my arms, shoulders and neck, which I explained to the psychiatrist. She recommended that I go back and see the doctor to discuss dealing with this development.
By the time the doctor’s appointment came around, I still had not heard from the physiotherapist. I tried to explain to the doctor about my increasing and spreading pain, he would not let me speak and lectured me on CRPS being a forever condition. I tried to question my medication and received a lecture on opiate addiction in pain patients, albeit no discussion relating to my medication specifically and each time I tried to rephrase the question so that he would understand what I was asking, he repeated his rant on opiate addiction. My next question was regarding ketamine infusions, the result of which was the doctor ranting on ketamine addiction and that if one were to help then I would be asking for them every few months and that is not how he treats. Fine, I thought, next question – what’s going on with my outpatient therapy?
“What outpatient therapy?”
The doctor then proceeded to blatantly lie about the fact that this was ever a part of my program. Without having questioned any of my activities since November, he lectured me for not doing anything to treat my mind and keep myself positive and productive. When I tried to explain what I do in regards to this, I was lectured for not doing volunteer work – something that he had never discussed with me, ever. I was told that I couldn’t benefit from outpatient therapy and my only hope was to talk to the psychiatrist. Am I the only person who sees this as a direct contradiction to his earlier point? If one needs to balance physical and mental therapy to heal and progress, then why was I lectured based on his assumption that I was only focusing on physical aspects and then told to only focus on mental?
The appointment did not end well. The doctor would not let me ask or clarify questions, speaking over the top of me, despite my repeated requests that he let me finish what I was saying. I got angry, which always reflects badly on a pain patient. He effectively aggravated me until he could justify his preconceived idea that all of my problems with pain management are stress and anxiety related. He spoke condescendingly and manipulatively, using smug smiles as he lied about the outpatient therapy ever existing to try and make me believe that he was telling the truth and that both he and I knew it. He spoke over the top of me to try and beat me down so that I wouldn’t ask anything more, attempting to intimidate me into simply accepting what he said. When I got agitated, he turned his shoulder on me and spoke directly to my partner, as though I was a child, which was quite clearly further power play to further aggravate me. All of this from the man who from the very first appointment told me that he “doesn’t play games”.
Naturally, this ordeal has been stressful and harrowing as yet another physician, who claims to be an expert, leaves me out in the cold because I don’t fit into his box. I decided to record a video diary for my own recollection and I’ve ended up editing it together into something that will give you a little insight into where I am and where I’m going now. Enjoy.
The brief respite that I was feeling around this time last week quickly degenerated into flaring that quite literally knocked me off my feet. I know what you’re thinking, that flaring ankles must just mean I have to walk on my hands, no big deal. Unfortunately for me, my hands were a big deal. A big, fat, swollen deal. Stuck on the end of a couple of swollen arms.
I’ve spent a lot of the time looking like I’ve just been punched in the face, thanks to my inflamed jaw, which never seems to feel quite straight. The burning that used to stop at my elbows now connects to my jaw via agony in my shoulders and neck. A new contour pillow is helping me to wake up in less pain, however things have been altogether far too difficult lately!
The final, upsetting, development has been increased pain in my knees and elbows. It’s so freaking hard to get comfortable! I need to keep my knees and ankles supported on pillows and there are just no comfortable positions for my arms.
I’ve been battling through as best I can. I’ve had a lot of trouble concentrating, so I’ve been slowly digesting a fantasy novel (Inkspell by Cornelia Funke) and watching a lot of trash tv. Not being able to think is as frustrating as the pain itself, it makes battling the boredom a much greater task. Sam & Lucy are fabulous, if sooky, company when I need to spend all day on the couch, they just never seem to run out of cuddles.
All of this increased pain and flaring is incredibly confusing to deal with. All of a sudden, the rehab and personal care routines that I had worked out are knocked out of the realm of possibility. The plans for crafty things to help me feel more productive are all put on hold as I struggle to even type. I wait for the flare to pass however instead it just gets worse. With pain levels constantly rising it’s almost impossibly to gauge how much movement is too much. Walking to the sink might be ok, or it could send me straight to metaphoric Hell.
Extra pain means extra anxiety. Is it just a flare? Is this a spread? Will I have to deal with being at this level of pain forever? How can I take care of myself at this level of incapacitation?
Extra pain for extended periods of time also puts stress on those who care for me. When I am unable to prepare myself food and do household chores, those responsibilities fall onto other people and become their barrels of stress. I hate feeling like a burden and no amount of reassurance in the world seems to make me ok with this. The only perspective that brings me a little peace is to imagine that the roles are reversed. Would I be as caring and supportive as my loved ones are? Of course, I simply can’t imagine anything else, I would be there for everything they needed.
I am going to see my pain specialist tomorrow to discuss what’s been going on. I am hoping that perhaps there is another drug choice that will help me or that he might be open to trying another ketamine infusion. If my condition continues to deteriorate, I am going to end up a screaming vegetable in a nursing home, so I am about willing to try anything. Rehab alone is failing me.
Recently, I watched the 2006 film Kurt Cobain About A Son. This doco style film is a collection of audio interviews recorded with Kurt Cobain between December 1992 and March 1993, matched up with some random film footage. As a film, it’s terrible, but listening to these candid interviews was very enlightening for me. Sure, Cobain wasn’t all that straight in the head – he comes across as introverted to the point of self obsession, seemingly unable to empathise with others and repeatedly describes his hatred of the people and society around him. However, the enlightening thing that I didn’t know before I watched this film, was that crazy Kurt Cobain also just happened to suffer from chronic pain.
(click image for source)
Cobain describes enduring intense back pain in his teens as a result of scoliosis. He later suffered severe stomach pain:
“I’ve always had a pain I wasn’t imagining, I was in pain all the time. Probably psychologically decided to trade off my spine pain for my stomach pain. Once my stomach started up it was so much more intense than the spine that I hadn’t thought about my back for a long time.”
Later in the film, he describes the Hell of touring amidst all of the pain. His words are in the past tense, as though he has overcome his pain, however the only actual relief he speaks of in the film came in the form of heroin. The latter paragraph quoted here reads almost, and quite tragically, as though it were written after his suicide, which took place a year after these interviews were recorded.
“I’ve managed to just carry on, I mean , there’s been so many times where I’ve been sitting or eating and having massive pain and no one even realises it because I’m so tired of complaining about it. And it hurts on tour so often that I just have to, I mean, I have no choice but to go about my business and they have no idea I’m in massive pain.
Like halfway through the European tour I remember just saying that I’ll never go on tour again until I have this fixed because I wanted to kill myself. I wanted to fucken blow my head off I was so tired of it, there’s no way I’m gonna live like that. It turned me into a neurotic freak, I was psychologically fucked up, I was having a lot of mental problems cause I was having chronic pain, every day.”
-Kurt Cobain, quoted from About A Son
I was only 11 when Kurt Cobain died. Nirvana was that band that my older brother listened to. It wasn’t until my mid teens that I would take my own musical journey through their collection of hard boiled angst. The internet wasn’t much back then, information didn’t flow as freely and anything I read about the late musician, whom I was fascinated with, came in a magazine. From what I understood, his death was another tragic case of fame and drugs gone wrong. I never knew that he suffered from chronic pain. This highly important fact has always been glossed over by ‘depression’ and ‘drug addiction’.
This got me to thinking about other celebrities – Michael Jackson, Brittany Murphy, Adam Goldstein, Heath Ledger – all of whom have had the use of prescription painkillers reported as involved in, if not the cause of, their deaths.
As a society, we sigh and we mourn these tragic losses to drug addiction. Something mainstream media doesn’t do is discuss the pain that led to those addictions. Even more rarely does the media entertain the possibility that these people were actually still in physical pain, not simply depressed. Did you ever look at Michael Jackson’s deformed face and wonder how much it hurt? How much physical pain it caused him? Like most of us, you were probably too busy being disgusted by his decision to put himself through the surgeries in the first place.
Personally, I am a little disgusted with myself for never having considered this topic earlier. Upon hearing of Brittany Murphy’s death I was saddened that Hollywood had claimed another young, anorexic drug addict. As I read that she had been using pain medication since plastic surgery, I still gauged from the article that her ongoing use of them was addiction based. It never occurred to me that she was really still in pain. Here I am, someone who fights to express her invisible pain every day and yet still the fact that these people were celebrities blinded me to the idea that they were in pain, just like me. I shall not be so quick to jump to conclusions in the future, only open my mind to possibilities when the facts can’t be known.
Cobain’s interviews allow a peek into a very intimate part of his life. Pain is not something anyone really loves to share, celebrities even less so. Most people who are on the receiving end of such personal dialogue from a celebrity are sure to be bound to silence by contracts and pennies. Unfortunately, celebrities are rarely viewed as people in pain, the gossip rags don’t write articles highlighting suffering – not when they sell twice as many copies with a juicy article on drug addiction.
The real tragedy of goldmine journalism is that these tragic, famous souls, could help lift the veil off the plague of invisible and chronic pain. Instead, we read articles about celebrities who recklessly elude to having chronic pain conditions to counter accusations of substance abuse. I don’t know Paula Abdul personally, but I do not believe for a second that she suffers from RSD, as claimed. Nobody who truly understands this pain could swan themselves about in heels as they dance for music videos and do nothing to raise awareness for their condition.
Sadly, many of the high profile people that could really relate to chronic pain aren’t here to talk about it. About A Son gave one of these people a unique chance to speak from beyond the grave. Society needs to take its eyes off its laptop, unplug the Bluetooth from its ear and take a really close listen. Millions of people suffer in silence, every day, because they have no way of making their voices heard. I’ve often thought that in order to really raise awareness for CRPS, someone famous would have to suffer from it – think about the public awareness raised for Parkinson’s Disease since the inspiring, post diagnosis, work of Michael J. Fox. What I realise now is that chronic pain has had many martyrs, only society is too busy labelling them drug addicts to notice.
Love, Losses & Ponderings,
Caf
P.S. Finally, for the first time in weeks, I can say that I feel a little better today! The air doesn’t feel so heavy and hard to move through and my limbs have cooled a little. Hurrah!!
It sure is hot outside. Personally, I’ve had quite enough of Summer. I spent Winter wishing for warmer weather, only to discover that I can’t tolerate heat any more than cold. It would be particularly helpful if Mother Nature would agree to keep things at a pleasant temperature and stop throwing these tantrums. Melbourne has always been a little bipolar when it comes to weather, but these recent fluctuations have been ridiculously extreme and extremely painful for many of us who suffer from chronic pain. I am constantly looking forward to the day when I will live in a home with air-conditioning once more, however until then, all I can do is grin and bear it. Ok, the grinning part is all fallacy, more like groan and bear it.
Yesterday, my pain went through the roof. Sitting up was too painful and I was stuck in bed, twisting and turning, unable to spend too much time on any side of my body because the pressure between myself and the mattress caused pain.
The only thing that I can do to get through this amount of ouching is breathe. I try to engage the meditative skills I have learnt and relax my muscles. I scan my body, mentally, tune into the areas that are in the most pain and try to release it. Visualisation is a nifty tool, I find my mind automatically imagines the inflamed areas as red (rather like a Nurofen commercial) and so I try to picture a cool blue flooding these areas. It doesn’t always help, but the mere act of focusing on this process is a distraction from the intense heat of the pain. The best way I have ever heard meditation described is as a shift from thinking to sensing. Focusing your mind on physical sensations, such as sounds, temperature, pressure and even pain, immediately allows it less room to play around with the thought viruses that make enduring pain more difficult.
I’ve recently been playing around with visualising myself in another place, a better place. Pictures I’ve seen of The Maldives come in handy for this, but mostly I just want to go and sit by the river at a camping site I visited annually growing up. I had so much time to daydream there as a child and I like tapping back into that sense of nothing being impossible. I like remembering what it was like to feel inspired about the future and to plan all the wonderful things I would do. It can be a sad memory if I let it, however I try to channel that sense of childlike wonder and expectation into my current life and think about the things I can still achieve. Small things – my current crowning achievement is maintaining this blog. There have been times when I couldn’t blog through the really bad spells, I’m glad that I have learnt to try and focus on the positives and by sharing my methods of dealing it helps me to keep them in place.
Attempting to meditate on your own can be difficult. A couple of years ago I took a short course run by The Melbourne Meditation Centre that I found incredibly enlightening and helpful. Not enlightening in the spiritual sense – something that many people automatically associate with meditation – but enlightening to the fact that meditation doesn’t have to have anything to do with spirituality at all, it can be entirely physical. As I learnt in the course, it only takes five deep breaths to create a physiological change in the body and begin the process of relaxation. I find audio tracks really useful as guided meditation is easier to come back to when I find myself drifting back into thinking, which I will inevitably do continually as I try to relax. It can be frustrating to have to focus so much to relax, but the physical benefits are well worth the HEFfort.
The toughest part of getting through this flare is coping mentally. When I feel myself starting to lose the plot a little, or head down a destructive thought trail, I try to put the brakes on quickly and counter those thoughts by focusing on what I can do to make things a little better. Socialising with people who have similar problems can often be helpful because in the process of discussing their issues, we sometimes find the resolutions for our own. It’s always easier to tackle someone else’s problem, especially when their story is similar to ours. Lately, I have been thinking about this process and trying to ask myself, “What would I tell me?”. It’s not always easy to have the strength to follow my own advice, but the more I ask this question and the more honest I am with myself about how I can choose my responses to both thoughts and pain, the easier it is getting. I might not be coping in the best way possible yet, but let’s not forget that the human condition is never to reach nirvana, there’s always going to be a possibly better state of being, glinting at us from the horizon.
What an exciting weekend!! So far, I have spent the entire time on the couch. I feel like I have been in flare forever and a little like I’m start to lose touch with reality. I don’t exactly see that as a bad thing, reality is so painful and so very real. I have been dealing with full body burning for long enough that I think I have earned a break. I can’t take a physical break, so I’ve been mind vacationing in Beverly Hills with some physically healthy, if imaginary, young friends.
(click photo for source)
Flares can be really confusing. All of a sudden, I can’t do even the small tasks that get me through the day and rehab activities become too excessive when laid upon household chores. I gave hydrotherapy a go on Friday, I figured I was in so much pain anyway that it couldn’t hurt. That was stupid thinking, of course it could hurt. The actually movement felt good, however a few hours later the pain skyrocketed once more and I felt set further back than where I started. It’s been hard to handle this because, along with maintaining general health, improving CRPS through physical therapy is based on the idea that the body can desensitise to the pain of activity if we can find our physical limit and increase it ever so slightly. The trick is finding my pain limit, but not exceeding it. The catch is that I don’t know at the time of activity that I have exceeded the limit, I don’t know until the flare strikes later and then it’s ever so confusing to try and back track my movements to find the trigger. The second catch is that I have CRPS – there isn’t always a trigger, sometimes the pain just is.
I am so tired of being bored. I’m certain now that the mirtazapine is helpful for controlling my anxiety because I don’t feel irrational and angry about the pain…I’m just bored. I’m tired of the cycle, I’m tired of the pain spreading, I’m tired of fighting the negative thoughts (even though I’m still winning, mostly) and I’m tired of having no control over my life. Chronic pain exists in many forms at different levels, for me it is strong enough to incapacitate me to the point at which I can’t even stand to make toast. I have never known such a feeling of helplessness as not being able to care for myself within my own home. I’m tired of asking for help. There aren’t enough Zs in the alphabet for me to express just how tired I am.
Anyhoo, what am I going to do? There’s nothing to be done but Hope, Endure, Fight. HEF – a fitting acronym, considering putting up with CRPS is a Hell of a lot of Heffort (could not resist). I’m still trying to move. I’m not giving up on the pool, although I think I’ll arrange a driver next time, and I have been distracting my brain in one of the best ways I know how – TV show marathon.
There’s nothing I like quite so much as engrossing myself in a television world, vicariously partaking in the characters lives and filling up my brain with thoughts of their problems, rather that my own pain. TV show marathons are easy, light entertainment. You meet the characters and the world at the start, after that the brain really doesn’t have to do much to keep up and follow along. It’s easier to follow the new adventures of an old character than to be introduced to new ones. Kind of like it’s easier to read a book after the first couple of chapters, once the style and setting has been firmly established with the imagination’s eye.
I have spent these past couple of days in pain on the couch, however my mind has been wandering shamelessly around Beverly Hills with the second generation of 90210 brats. Sometimes I get a little sad, when my thoughts become a desire to move about freely like those people on the screen, however mostly it’s just a nice way to chew through the hours when neither my body nor brain care to function. 90210 shows me so many characters to relate to parts of, so many bright colours, so many pretty clothes. Annie’s dresses are sometimes awfully cute, but Adrianna’s preppy meets pretty style is my fave.
(click photo for source)
The sad news is that I’m out of 90210 and feel the need to do something else for a while. My options are limited, but I need to keep fighting, I need to try to get chores done even if it’s only a dish or two at a time. I need to keep my focus because this is the time when it’s hardest to, this down part of the pain cycle when everything feels compacted and exaggerated at the same time. I need to keep my head Audy, so that I can bounce back, or climb back – the verb isn’t important. What’s important is not losing my mind to the negative and keeping my focus on doing all that I can to get better.
Bedtime is one of those everyperson things that happens every day. When we’re kids, we fight it off as long as possible, desperate to discover the intrigues of the adult world and to be sure that we don’t miss anything important. When we’re adults, we crave the peaceful escape of unconsciousness, the intriguing and important things that we get up to during the days and nights leave us always longing for ten more minutes on the pillow.
Bedtime, for me, has gotten to be a bit scary. It’s not the monsters under the bed that I’m afraid of, it’s the one called CRPS that’s going to torture me upon waking. Fear about sleeping is not a good emotion to indulge, without sleep I would simple cycle further and further in to anxiety and depression, therefore I must do all I can to try and get around the frustration that comes with waking in so much pain.
Sleep disorders are vast and varying, they cross-breed symptoms, create chaos and can mostly be found walking around wearing a t-shirt with an ‘Insomnia’ slogan. A common cause of insomnia is anxiety – the brain runs in circles trying to solve problems that cannot be solved or escalating worries until you want to don a sandwich board and walk the streets, crying to warn the people of some upcoming devastation. Anxiety is kind of a subset of stress. You’ve probably heard that a little stress is a good thing, people claim that they ‘work well under pressure’ or how they were able to climb great mountains driven by a powerful, pulsing, determination that they could not ignore. Stress is overstimulation, the brain in overdrive, propelled by external or internal stressors and can affect a person in both a positive and negative manner.
Stress often gets used as a nice little blanket word to cover up anxiety, which I can’t help thinking shows that there is still, sadly, stigma attached to suffering anxiety. Anxiety is about the most negative type of stress there is, it creates a state of constant nervousness, it’s the flight or fight response on repeat. Anxiety is linked to depression and whilst society is coming to accept this as a physical disease, many still feel ashamed of their condition and disinclined to talk about it. Ever known a drama queen? That friend who always seems to have big problems, or only pops up in your life for minutes at a time and often claims to be stressed if you press for information. Ever think of him or her as a jerk? Anxiety is not a choice, it’s possible to be suffering and not even know yourself, although the people around you probably have words for it – ‘lazy’, ‘fickle’, even ‘selfish’. The longer I suffer my own medical burden, the more I realise how many people are walking around with these little weights on their waists and how these are perceived by the people around them.
Suffering from anxiety creates thought cycles that can turn even a tiny, insignificant event into a devastating blow. Anxiety is the consummate actor, it loves to put on the stress costume and stage its own version of Much Ado About Nothing. There are many people going about their lives not knowing that the worries that consume them are irrational. The anxiety becomes so good at playing the part of reality that the sufferer is unaware that the show has begun, even though they are racing through the script, desperate to solve the mystery and end the drama. A lot of hurt and anger can be generated from undiagnosed or untreated anxiety, it’s always good to keep an eye out rather than jump to any conclusions about the changes in a friend’s behaviour, or to ignore changes in your own.
Anxiety and chronic pain go hand in hand, it’s pretty hard to suffer the latter without it getting blended up with the former. If you are healthy, think about the last time you were really ill or got hurt badly, do you remember how stressful it was? Pain is biologically designed to make us stress, it’s there to tell us something is wrong with our body and that we need to worry about it. With chronic pain, there is rarely something immediate that can be done to relieve it. Our modern day assumption that pain should be relievable through medical treatment develops cracks as the days drag on and on with no end to the firing of nasty nerve signals. Despite their malfunctioning, those pain signals still manage to get our anxiety motor running and since we can’t solve the pain problem, our minds just love to find another focus for us to worry about irrationally. I find it a constant battle to try and recognise when I am actually upset with a loved one and when it’s simply anxiety making a big deal out of nothing.
In previous posts I mentioned that I have been taking mirtazapine to help me cope with my anxiety. After a couple of weeks, I’m pleased to say that it is helping greatly and I’m feeling more clearheaded for more hours in the day. The drug has made getting to sleep an easy thing, however the recent flaring of my CRPS pain has made waking the most awful part of the day. I am waking with burning in all four limbs and through my shoulders, neck and jaw. The pain strikes before my rational mind kicks into gear and I am usually moaning or crying before I ‘come to’, as I think of it. I have a well supported bed and pillow and try to sleep on my back, it seems that no matter what position I sleep in, I am waking up in agony.
So, what is the point of this post? I’m trying to figure out how to make bedtime less scary. I have my nightly ritual like most people, exciting things such as brush teeth, wash face, fill water glass and then escape into whatever story I am reading until my eyes blur and I know I’ll be asleep moments after the lamp is switched off. The scary part comes later. Microarousals start waking me from around 3 or 4am and the restless sleep from then on in is laced with pain. Morning after morning of pain is making it harder to file these niggling and negative thoughts of ‘bed is painful’ under ‘unhelpful’.
Whatcha thinking, Audy? What helps you to get out of the bed in the morning, even if you are in pain? How do you stay focused on getting well and doing your best when your body and mind seem to be plotting against you? I’m still far from the end of my rope, trying this new thing of attacking the problem before I am swinging off that rope and clutching on for dear life.
I’ve been in full body flare for a week, with hardly a break before that. These flaming nerves keep cranking up their signals and demanding to be noticed in all of the parts of my body that reach from my cheeks to my toes. At times, it’s all I can do to lay and breathe as my body stings beyond the reach of any medicine that I have met. I am doing pretty well to keep my chin up and plough on through this prickly time field of thistles.
Sunday brought me the chance to attend a barbecue and celebrate the birthday of a friend. I have to acknowledge what my body sets as its limits or I’m headed toward further pain, however, I was determined to arrive and say “Happy Birthday” at her family celebration, even if well wishing really was all I could do. A friend’s celebration with their family can often be more stressful than a gathering of just friends – there are many people who are comfortable with one another but unknown to others completely, which can create a feeling of exclusion or even intrusion for those comfortable with less of the people. I tried to relax as much as possible, enjoy the sunny day and the memories invoked by noise of children playing, whilst avoiding too much adult conversation.
Social situations are a little bit awkward for most people. There are few who easily wade the waters of surface conversation without causing accidental ripples. When you suffer from CRPS, it can feel like a giant elephant in the room. I still feel the pain, but, I don’t want to talk about my condition in great detail – just the same as I don’t want to talk about famine or homelessness, when I’m at a party. Getting deep and depressing doesn’t really run parallel with having a good time. The close and meaningful parts of friendships are better kept for the more private chats. In a party situation, I often don’t have the strength to meet new people because of how draining it is to explain the reality of me. I don’t want to answer, “So, what do you do with yourself?”
I’ve found the easiest way for me to survive a party when I am not feeling my best is to lay as low as possible. I didn’t speak to many people at all…but I did get to see the birthday girl. I still had a little fun, a play in the pool and caught up with a couple of friends. I felt awkward and I was in a lot of pain, but sometimes putting on an emotional mask is better for everyone. If the pain gets bigger than the mask then that’s a good indicator that I probably shouldn’t be going anywhere in the first place. Sometimes choosing to show only parts of who you are and what you’re feeling in a particular situation can be the wisest choice, whether you are suffering from physical pain or some other mental or emotional turmoil. I definitely needed that mask to make Sunday successful for me.
I might not have had a wonderful time, but let’s not forget, it wasn’t my birthday. It wasn’t my spotlight. It’s hard to be in so much pain when nobody can see it and the longer my suffering continues, the more invisible I feel. Repetition gets boring fast. Sure, it might be harder to endure the pain than to hear about it, but that little piece of wisdom doesn’t change the fact that it is still hard for the listener to keep taking in parts of another person’s suffering. Changing plans is a great option to have when I can create it, however relationships bring with them another person’s world, their needs and their schedule. I can’t reschedule someone else’s birthday or wedding or Christmas party, all I can do is attend where possible and try to find peace with missing out when I can’t attend. All I can hope for is that the people who are important to me understand the unpredictable nature of my illness.
Learning to plan properly is something I am working on, I can’t control everything, but I can try to organise that for the things I want to do that count as ‘up’ time, I schedule in some ‘down’ time to recover. I had to lay still for hours after the barbecue and I did my very best not to feel as though I should have been doing something more productive. The longer this flare goes on, the more times I have to just stop, breathe and allow the most painful times to pass. I’m trying hard to find the balance between activity and rest so that I can do more meaningful things with my time. Today has just been spent doing parts of housework interjected with long periods of couch, however I’m here, I’m still thinking and I might be in pain but I’m doing my best to not let that put the brakes on my life completely.
Science might be able to prove that feelings aren’t what makes the world go round, however they sure do propel the people living on it. I’ve read enough about thoughts and emotions to understand that the former causes the latter, however that doesn’t always make controlling the thoughts any easier. I’ve been feeling rather like the pictures below would suggest, i.e. punchy. I’m trying to keep those feelings down, anger and stress are things that escalate pain and since pain is the problem here, I’d rather keep its cheer squad as hushed as possible.
The thing about thoughts is that we aren’t actually responsible for them. They just happen, they’re just impulses flitting about between cells. What we can control is which thoughts we give weight to, which we allow as truths and which we allow to pass, watching them disappear like lightning flashes over a field. It’s easy to ignore an irrational thought such as (in the cinema) ‘I should kick the head of that person sitting in front of me’ or ‘I should just push over this shelf in the store and see what happens’, because they are obviously irrational. The fact that these thoughts come into our minds doesn’t mean we have to act on them. Thankfully, we have our Egos and Superegos working to keep that nutty little ID under control, but that doesn’t mean we don’t still hear it shouting its crazy urges (a phenomenon that, long ago, some friends and I termed a ‘crurge’).
Suffering chronic pain can lead to a lot of negative thinking: ‘I’m never going to be well again’; ‘Things are only going to get worse’; ‘I am a burden on everyone’. Self destructive thoughts are often the hardest to ignore, although that is exactly what we must do to overcome them…even if they might just happen to be truths. It can be a really hard concept to grasp – the idea that our thoughts are not ourselves, that we are actually the person who edits, actions and files them. Chronic pain leads to a lot of down time, a lot of forced rest and free time for the brain to go ahead and produce any amount of thoughts it likes. On a biological level, pain is also simply signals passing between cells. Many sufferers may be able to relate to a feeling of mental disjointedness right before a pain flare, to having issues with memory and concentration at any time and to feeling as though they are incapable of processing new information. It makes sense to me, that the pain signals bulleting through our brains might just get in the way of a few of the thought signals, I mean, I’m not a scientist, but how many signals can one brain take? When the brain is overloaded like this, it can make it a lot harder to determine a crurge from a rational action, or to recognise that a particular thought is negative. The most detrimental effect of this brain overload is losing the strength and clarity to fight off a negative thought, even when does fall into our mental spotlight.
I’ve been flaring terribly this week and fighting the mental battle feels as draining as enduring the physical one. My body has been burning and prickling from my face to my toes, my joints feel inflamed and I have to keep returning to bed at regular intervals because laying flat is the safest position. I feel like gravity has decided I need a double dose and even the rise and fall of my fingers over the keyboard is difficult. I must endure, though, I must not let all of the negative thoughts dictate my emotions, even if there are so many that they are crashing into one another in an effort to be noticed. I’m fighting constantly to turn the thoughts around and try to combat the negative ones by applying positive counterparts. My positives list might be thin but I try to give these thoughts more belief, more faith and make them strong enough to beat down the masses of negatives.
When I opened the laptop, I thought this would be a whining post, I thought I just needed to vent. Instead, I got to thinking about thoughts and I feel I can cope a little longer having focused on this post for a while. Being in my body might be excruciating at the moment, but I want to get through this without going psycho. I don’t want to start sobbing to the point of hysteria, or until the neighbours knock on the door to make sure everything is ok (this has happened twice, there are still good people out there). I’ve already missed out on the social things I wanted to do this week. I didn’t get to party it up on Australia day and I’ve missed out on a girly night of birthday fun and madness down at Phillip Island. These events are in the past and it’s no use dwelling on the fact that I couldn’t attend so I am turning my attention to what I can do to make today better.
I shall continue trying to move, gently, even if I must rest after thirty seconds. I am reading a marvellous book (Mao’s Last Dancer) and I have a beanbag book holder so I can distract myself with that for a while, even if my hands hurt too much to actually hold the book. I’m delving into podcasts, this is something that can keep my brain active and inspired, even when I’m stuck on my back. I am trying to stay connected to the world by checking in online using my iPhone – the touch screen and light weight make this perfect for when it’s hard to use my hands. I’ve even gotten this blog post written while the morning’s caffeine is still powering the parts of my brain that do think rationally. Strange…I really thought I just needed to scream, but I guess I just needed an outlet to check in with myself, take some time to notice what’s going on in my brain and my body and to have a think about what I can do to make it more endurable, rather than sobbing with despair. I’m actually feeling a little proud…and like I need a nap.
The internet is a funny old place, isn’t it? Well, funny new place would be more accurate. People rise to and fall from fame within weeks, sometimes days, even hours. Fads come and go, new topics are spread like bushfires seconds after a reliable, or not so reliable source ignites the spark. Musicians find record deals and get discovered by the likes of Michael Jackson on Myspace (eg: Lily Allen, Orianthi). Then there’s the story of Heather B. Armstrong, a blogger who gained notoriety by getting fired for writing about her employment, back when blogging was new, and who now has a large enough audience to generate an income that means she no longer needs an employer. As a professional blogger, she’s living the dream of many. (Heather’s Blog – Dooce).
This instant fame phenomenon leaves a lot of people wondering how they can get in on the action. When I began my blog, I was just like everyone else. Consciously I was writing to raise awareness about CRPS not questing for fame, but, I must be honest, the idea was there in the back of my mind, ‘Wouldn’t it be wonderful if millions of people started reading my blog?’. I posted my link wherever I could, joined blogging networks and kept writing and even doing activities, thinking the whole time about how I would write about them later. I was newly diagnosed with CRPS and thought that the more attention I got, the more awareness I could raise about my condition.
As my CRPS worsened, I found myself caring less and less about who was reading, I started writing for me and to share with the people close to me. Spreading awareness to the people close to me is what helps me on a daily basis, spreading awareness to the masses uses a lot of energy and most of the time I need that energy to get through the days. From the moment I stopped allowing the number of readers to dictate my emotions, I found my writing flowing much more easily. Since I stopped trying to persuade people to read my writing and started going out there and reading theirs for my own interest, I have found many amazing people to interact with. If you take the time to go and get to know someone else through their writing, not only will you learn something and possibly make a new friend, but they are much more likely to want to get to know you than if you simply beg them to click on your links. Like everyone, I’ve come across people who don’t like me or simply aren’t interested in what I have to say, even some who have abused me for my writing, however I think that one has to accept that this is par for the course with online socialising. For every human gem you meet, you will probably have to sift through fifty robots and morons.
This desperation to be noticed is often bred from insecurity and people allowing their sense of self worth to be dictated by what other people think. Let me tell you a story: A friend, who shall remain nameless (we’ll call her Fred), was recently put into a tough situation by an online associate (We’ll call her Lyn). The nominations for a writing competition were announced and when she wasn’t nominated, Lyn chose to write a passive aggressive email to everyone involved in their group and express her disappointment that her friends must not have voted for her, being that Fred had won the nomination over her. The email caused an uproar that saw some members attempting to inflame Lyn’s anger and create distrust, possibly for their own amusement, possibly because they are psychotic sensationalists. My point in mentioning this story is that Lyn’s desperate plea for validation, her need for people to not only like her, but value her work above all others has completely destroyed the joy that should have been Fred’s after her achievement. Lyn’s public whining inadvertently caused hurt and upset for someone completely innocent of any wrongdoing.
This case got me thinking about how often I see people pleading for others to like them, pleading for readers and pleading for followers (the Twitter kind). There is a huge difference between respectable self promotion and flat out desperation. There is a difference between letting people know you have published some writing and demanding that they read it and respond to it. The more I see someone demanding attention, the less likely I am to feel inclined to give it to them. It was my feelings about other people’s desperation that made me sit and consider my own. Of course, I love it when people do read my blog, but I try to limit the amount of time I spend sending them links. It’s occurred to me that I’m not here to make money, I’m here to communicate and so I am less interested in generating traffic and more interesting in generating interesting interaction.
To all the Lyn’s out there I say this: “Trust me, we can see the desperation and it isn’t making you any better at what you do.”
To Everyone, I say: “The only person who can validate you is you. Try believing you are worth something. Give not caring about others opinions a go, you might discover that you don’t really like the things you thought you did, you might discover that you were following trends for the sake of it without even realising it. Spend some time thinking about your core values and what makes you smile, it’s a faster route to happiness than expecting others to provide your giddy emotion fix.”
Love & Pondering,
Caf
P.S. Happy Australia Day! I wrote this article type post to keep me distracted from a vicious flare. VICIOUS. Pretty much, from my ears to my toes is burning. If you are inclined to and wouldn’t mind sending a little thought to the powers that be to cut this out, I would be much obliged.
Greetings! Welcome to the blog of some chick from Melbourne. I like pretty things, creating things, observing things & mocking things. I live with RSD/CRPS, a painful and poorly understood neurological condition. Rellacafa is where I share the struggles and success along the way.
