Tuesday, 27 March 2012

The Pain in the brain really drives you insane... Living your life in a game of chess...

It's certainly an interesting time in the treatment of pain. Body in Mind has a link to an article in The Australian (a national broadsheet newspaper) titled: “The champion cyclist, her mysterious excruciating pain and her unconventional road to recovery” written by Christine Jackman (The Australian, 24 March 2012. Click on the link for full article)  I also found a piece in the dutch language magazine Elsevier (No 11, 17 march 2012, pg62:) “Why pain isn't needed” (Waarom pijn niet nodig is); talking about the increase of multidisciplinary pain-clinics in treating pain as a condition and management techniques to lessen the impact it has on peoples' lives.

The newspaper article linked in Body in Mind is very well written; well worth reading. It is not often where I come across any article about pain that also mentiones CRPS. Usually it is overlooked in lieu of the more common lower back pain. Perhaps it is just too strange to mention! It gives a great insight into the realities of Pain, and a look at what it means to live with chronic pain, even as an elite athlete. There is too much in the article to go into in detail, however some points were extremely valuable and brought a smile to my face in the knowledge that once again, I am not alone. 

I am incredibly lucky that I've always been on the right path, even if I get a little lost sometimes. The incredible work of these pain specialists, the way they view Pain as a disease in itself; and their revolutionary treatment is really the reason I am able to do so much in my life. I am very grateful to them. 

Amanda Spratt is a cyclist with the Australian Institute of Sport, competing internationally. She rides with her gnawing demon alongside; just as much as I carry my frenemy Pain. It was wonderful to read her story, her words echoed mine in many aspects, though hers more succinct:
"But nothing out there will hurt me as much as I used to feel. The difference now is, the whole experience has made me much smarter. Knowing what I do now has made me more confident. And that makes me stronger mentally – and more competitive”

It certainly does. I will never again, suffer again like I did during those early years. Nor will I ever fall as far down, as I did 3 years ago. There are ups and downs, sure. But I have done it – I know so much more now! Living in a prison of pain gives you many hours of unwanted self-reflection. Sometimes you become so controlled by the pain that it's all you can do to stop going mad. Gives you something else to focus on rather than the pain that just won't stop. Sometimes you have to be self-absorbed in order to fight it.

So it is said that if you know your enemies and know yourself, you can win a hundred battles without a single loss.”  The Art of War - Sun Tzu

Written somewhere around 400 BCE (late Spring and Autumn/Warring States period). Perhaps the oldest and most famous works on military strategies used still today, in business and military tactics. Being half-Chinese, it is something close to my heart. It is a part of my history. Ancient China was filled with battles both lost and won. But the civilisation itself, never died. China is still China, it survived. And so did these wonderful wise words.

You get to know your Pain when you have it all the time. But it is always in conflict; like the constant bickering over borders and kingdoms. There are some battles you will win and some that you will inevitably lose. Like a game of chess, you must accept that you are going to lose some pieces; you need to accept that things will hurt. It's what you do with it that matters. How you change tactics when the old isn't working. You have to be flexible, able to adapt when a strategy isn't working.

You have to look Pain straight in the eye, without fear and without backing down. You cannot be afraid of the Pain. It's hurting, so much sometimes that you feel you cannot take it anymore. But you cannot be scared of it. In chronic pain, the pain doesn't usually indicate further damage, it just “expects” to feel pain. If you're not afraid of something, it has no power over you. When you really know something, you also learn its weaknesses. You learn how to “manipulate” it to get what you want.

I too, am competitive. I won't back down every time to my pain. I understand that Pain is a part of my life, the travel-buddy-from-hell! But I also know how to trick it; how to manipulate it, while at the same time accepting that it may (or may not) throw a screaming tantrum fit when it realises it's been had. I'm not afraid of what it will throw at me, because I know how it works. It can hurt all it wants, but sometimes that is just the price of what you want to gain – freedom. A hundred battles without a single loss.

Professor Lorimer Moseley is one of the leaders in the neurology of pain. He was awarded in 2008 the outstanding mid-career clinical scientist working in a pain-related field by the International Association for the Study of Pain (www.iasp-pain.org)

It was back in 2002 or 2003; when I first heard about Professor Moseley's work. It was very much thanks to Dr Coralie Wales, of Chronic Pain Australia; who taught us the reasons we were feeling such excruciating pain all the time. The very concept of treating pain as a condition of its own, was revolutionary. She works very hard in the field of chronic pain, and in getting it recognised as a condition in itself. 

The knowledge that Pain was not something that could be aspirated out with a needle, poked with any instruments or operated away. These actions quite often made things worse in the drastic and sometimes brutal attempts to treat or cure chronic pain. I've asked my doctor to cut my arm off, but even if he did (he always reminded me that it wouldn't work), the pain would remain because it is NOT in my arm. It is in my brain, in my central nervous system, and in my neurological wiring that sends out signals that are not there - something you cannot slice and dice away. This Pain works quite differently to the nociceptive, normal “danger alarm” pain.

Weird symptoms, feeling pain when there shouldn't be; my strange self-portraits, less sensation with contradictory higher sensitivity (allodyna: feeling pain from something that was non-noxious ie: a gust of wind, clothes). Hot skin gave way to Cold. I needed to have something on my arm that gave pressure, so that it wouldn't hurt so much if someone touched me. A previous accident or experience of pain can set your brain up, to make it more “sensitive” to pain, even just the “idea” of what hurt. [TEDxAdelaide: Lorimer Moseley - Why things hurt].

Brains are strange in this way. Sometimes they play tricks on us. But it goes both ways – you can trick your brain back!

But the reality is, that it may always be there. You cannot change it; you might get better one day, you might not. You can't sit around and hope to be saved from it – you have to save yourself from yourself. Some things might not work; some times you'll fall in a heap and cry. But you pick up again, reassemble the troops and fight another day. You cannot let the enemy conquer any more of your life!

Most of the time I try not to focus on it, it certainly doesn't help me. The fact that CRPS is the worst you can get in the chronic pain scale, is not something I like to think about. I don't really care. If I think about it in that devastating way; if I let it in my head, I will lose myself to self-pity before I even begin.

What I do keep in my head; is the times when I was at my peak, both before and after the Pain. Photos are important; not to look at and feel sorry for the loss of the person you once were, but to see and remember how it felt to BE that person. You may not remember a life without the Pain, but you can remember that feeling of succeeding, or feelings of sheer joy and happiness. 

What is Pain, really, next to the extraordinary power of feeling on top of the world? Life is made up of mostly greys with bursts of black and white. It is in this melding of tones and using contrast that make the dramatic effects that we so love in a painting. It makes the image powerful and alive.

With the drawings I did and the floppy arm dancing, there was definitely something wrong in my brain “wiring”. Of course, dancing was also my saviour. I would stand in front of that mirror for many hours every day, willing my arm to move and look normal. An obsession. I didn't realise why, at the time. All I wanted was for no one to see my pain, I didn't want to think about it. I wanted the music to dance me and I wanted it to be perfect, nothing less. Those flowing arm movements were my physiotherapy and “brain” training. The improvements were excellent. I gained mobility; refined my proprioception somewhat. I appeared to dance as though I was a dominant left hander; not as someone who was in severe pain. And at times, I even believed it myself!

However, there are also many times when things were not so good. It was during one of those times when I had a consultation with Associate Professor Milton Cohen (Rheumatology, Department Head, St Vincent's Hospital, Sydney); who spoke in the article of the importance of Moseley's work. (He has also appeared on ABC Radio National Health Report 12.09.2011 and 06.10.2008 where he spoke about appropriate prescription of opioid medication in the treatment of non-cancer chronic pain; that it must be used in conjunction with goal setting and in a holistic framework of treatment and not as the sole method of pain relief/management)

I was lucky to get an appointment with Milton Cohen. He was such a lovely man; he listened patiently while I sat there in utter turmoil, crying into hundreds of snotty tissues that he never batted an eyelid at (I may have even put them on his desk – how embarrassing!!). My dearest Mother was right there next to me. She is a nurse who has years of experience dealing with doctors and specialists; she was impressed by his compassionate and gentle manner. With every suggestion he kindly made, it was rebuffed by a rude and somewhat tortured know-it-all in Pain; who knew all the things she should be doing because she's done them for years and they AREN'T WORKING!

I knew all the stuff, I followed it to the letter. I exceeded expectations and it still failed. I couldn't do it anymore, I couldn't keep failing. I was so desperate, I was suicidal. I had done 8 years of this terrible horrible pain and I just wanted to end it all. I hated the pain; I hated myself for being so weak as to be in pain. I hated the life and I felt in my heart that my loved ones would be better off without such a burden in their lives.

This pain specialist was one of the best there is; my last lifeline before I drowned. I wanted him to cure me; I begged him to fix me. I had been hopeless for so long, but there was a small part of me that wished that maybe, just maybe there was something we missed in the pursuit of being pain-free. Maybe there was an answer we hadn't considered yet.

Much of the appointment was a blur of blackness and despair. But I do remember when he looked into my eyes and said, quite sadly, that what I had would most likely be permanent. He also told me not to let any doctors operate, stick needles in, or anything like that; because it won't do anything. He made some suggestions, which I can't really recall now, as those words echoed in my head. Permanent. Forever. My last hope, gone.

While it was a very dark time; it was perhaps the turning point. What was obvious to everyone was the very thing I was trying to hide. There was no denying just how bad I was anymore. I had no choice, but to get treatment. I took some time off work, saw a psychologist to work on the depression (and a psychiatrist, the depression was serious). Much of the depression came from sleeping problems, the Pain interfering with my sleep. Nobody can function when they are chronically sleep deprived.

I started to listen to the doctors; actually taking my medication without skipping. I hated medication; the many medications that I went through. Pills that, for the most part, did nothing against the pain. For all those years I only took medication when I was at my very worst; believing myself “weak” for giving in and needing them. I had to change my outlook, and my expectations of what they were doing. The goal couldn't be an absence of pain, the goal had to be stability and getting my life back to "normal". 

I had some Bowen Therapy, which is a remedial therapy, working on restoring balance in the body by gentle manipulation of the fascia tissues (ABC TV Second Opinion: Bowen Therapy) which did correct my posture problems and had me walking much better than I was before. I had massage therapy, acupuncture... all useful things that are for managing and maintaining my condition.

Back in 2005, I was treated by Steve Lockhart of SLM Bodywork. He has treated Jeff Fenech, three times World Boxing Champion, among other world champion triathletes, Olympic finalists and record holders and many more professional athletes. These athletes would have had their careers cut short without his treatments. He is excellent, he taught me how to use his techniques in my own self-management. However he did tell me that what I have is notoriously difficult to treat, but he would do his best and we should get some results if I was able to tolerate the discomfort (many people with CRPS cannot tolerate any form of physical therapy, and therapists do not wish to cause more pain in their patients, so the immobility continues. It's a vicious cycle).

At times it was incredibly painful, but necessary to reduce the muscle and joint atrophy of my arm. It was during his treatments that I realised I could "block" the pain for short periods of time. I would put myself into a meditative state, a self-hypnosis if you will. Focusing on counting, on breathing. I focused on speaking to him; or staring at a point, on the floor or ceiling. Anything really. Steve was amazed by what I was able to withstand, as many of his patients required pain relief in the treatments. In many ways, I couldn't tell him how I was doing it, only that I knew this would benefit me and I had to make it work. So I tolerated the discomfort for the greater cause. It made significant improvements physically.

But the pain remained. Never ending. What did change over the years was that I started to actually live again. My amazing family; my dearest partner; those wonderful friends who stuck by me and never treated me any different. Those of whom accepted every excuse when I couldn't go out without question; though letting me know how much they appreciate it when I could. Tolerating the times when I would “drop off the radar”, or the times my behaviour was unacceptable. These people are what made me find my fighter inside, they fought for me when I had given up.

It is really only in the past few years that I realised just how much I had experienced. I saw that I did in fact, know what the answers were. I knew because I had already done it – I travelled WITH Pain quite well. Those short interludes of "pain days" were nowhere near as frequent as the incredible days in which anything was possible. That was what I wanted again, to co-exist with the Pain where I called the shots. It shouldn't matter whether the Pain is there or not, it's not who I was.

I found a website that sold mirror boxes (in the UK, I can't remember the name). It wasn't expensive, but I figured that worse come to worst, I could still use it for exercise. I cannot describe the feeling I had the first time I looked into that mirror and saw a normal-looking right hand. The fingers moving just like they did when I was 20 years old, fingers that drew so well without even a second thought. I felt a spark, a new connection being made in my brain that maybe, just maybe, knew what it was like to have normal arms.

Just like everything else, it isn't a magic cure. There is no cure. Years of pain bombardment has made my body into a Pain-lightning-rod. However, when you have nothing to lose, the only way is up. It is another tool in the box, one that I can use with no harm done. It might work, or not, but my tool box is full of things like this. Things that work only as a part of a set, and not individually.

It is nice to see, two hands working in sync. If there were piano keys under my fingertips, maybe I could play. That is the dream, the goal one day. Maybe I could be that person who had two pain-free and normal-moving arms. Just like everyone else.

I chuckled when Moseley told the story of the woman with 25 years of back pain, being cured after seeing a psychic. I had a similar experience, when I saw a psychic some years back. I am a skeptic by nature, but all the same I believe in fate. The psychic I saw was also rather accurate. What was more remarkable though, was that she told me that she didn't see whatever was wrong with my arm affecting my future. “Don't pay attention to it, it will feed off that and get worse.” I took that to heart. A few years later and I was on the greatest adventure I could do - travelling alone over thousands of kilometres; meeting people and being inside cultures that were so different to all I knew. And I paid as little attention to the Pain as I could.

Though I still have it and it still screams just as loud; I try not to listen, and then it really doesn't matter! It has no importance in the scheme of things, it just is. I don't think I could be where I am without those caring and special doctors and therapists; those who never questioned my pain experience. Who were honest in admitting that they didn't really understand this Pain; but were willing to help me find the things that worked and would enable me to live again - hand in hand with the Pain. 

Friday, 16 March 2012

Snapshots of the sublime in fire and ice...

It is the simple things that bring the most pleasure. Sometimes you wake up one day feeling much lighter than you did yesterday. As you drink your morning cup of coffee or tea; that moment before you take your first sip, when you inhale deeply that lovely scent and you feel instantly relaxed. Or the smell of salt and sea, to the sound of seagulls and waves.

After a period of gloom, a tiny ray of sunshine pokes through the curtains and blinds you in its brightness. It's those unplanned moments of fun that take you by surprise; allowing you to remember who you were before the pain - who you still are underneath it all.

Even better, is when you can't keep the grin off your face and your cheeks hurt from all the laughing. When you listen and all you can hear is the music; Pain only an irritating buzz next to its power, and not the siren or lightning it was before. This is it! Fun times work like magic; laughter makes light of the days of darkness.

Believing in magic, in the special things that happen in life can show you just how much there is to live for. You can see this in anything really, in the small gestures; someone who smiles when they speak to you; seeing a lovely sky or sunset; or hearing from an old friend. Or even something bigger...

I never felt it was my choice to live here in Europe. It was Europe who chose me. I love where I come from, I sing all the songs!! But I have been drawn to Europe for a long time, each time I felt like I was coming home (from home - home is everywhere!). I have a love-hate relationship with it, just like all the other Europeans; but I felt more "me" surrounded by different languages and cultures. I am well and truly the odd one out, but for the mere fact of being literally from the other side of the world.

The cold has always fascinated me, coming from the beach. Ice, snow; takes on a whole new meaning when it falls from the sky and isn't just the frost buildup in your freezer. I spent 6 weeks or so in Sweden some years back; utterly enthralled by that white stuff!! Sweden also taught me the importance of dressing appropriately for such temperatures. My gloves hardly leave my hands in this sort of weather; my compression sleeve under fingerless gloves, inside the outer gloves. I often feel colder in 5 degrees celsius than I did in -5 degrees!

Snow remains exciting, though I don't verge into the ludicrous when it happens anymore. Don't get me wrong, I still love it! I get that spark of excitement when I see it. It is just as magic as it was the first time; only now it's just more normal. I've bicycled in the snow, gone to work in the snow...

But February, saw a cold snap here in Northern Europe. Amsterdam saw temperatures of -15 degrees celsius overnight, -8 C during the days. It was bitterly cold for weeks, after a relatively mild Christmas. Every bit as intense as last year during the two-week heatwave in Australia; the complete polar opposite of 44 C and nothing below 36 C. While everyone grumbled about the cold and the dirty snow, my excitement was growing to extraordinary hights. Temperatures like that could only mean one thing here in Amsterdam. Ice....

Ice can be a pain in the bum, especially when you slip onto your bum running for a tram! The ice I cursed on the footpath grew to be my one true joy; the most excited I've felt about something in a very long time. Ice skating on the canals!!

You see, I can skate. It is something that I have done since I was young, beginning on roller skates; but ice always held that magical quality about it. The frictionless gliding, less hurts when you fall (properly, I might add - it is very important to know how to fall properly, without injury! I also wear wrist splints to protect my arms in case I fall). But more than anything else, it is something I can STILL DO! Something that the pain has not taken from me; something I don't need to compensate for, or modify. On a more level-playing ground; something I can do naturally without thinking or planning.  

 It wasn't the Pain skating, I was ME again and I slipped off the Pain at the same time I slipped off my shoes. I carried my shoes and Pain in my backpack; but it was me and me alone, skating on that ice. It was pure joy! I was flying as I skated up and down the canals on ice more pure, cleaner and the most glassy than I have ever seen in my life.  

Sheer bliss, skating one leg after the other. You get into a rhythm as you glide. The ice was so smooth, but the texture changeable because this is natural ice. The ice taking on the natural forms of the warmer water underneath. There were some ripples, frozen in time; the bubbles from fish, deep under the ice, frozen into the black glass of the canal. Here and there a crack, where the ice has moved or settled over the water. I felt at one with nature, with myself. I didn't fall, but I skated so much that my muscles ached in that wonderful way when you know you've achieved something. It was a "good" pain that I was willing to have, a "normal" pain that other people get. There were times I was on the canals as one of a few diehard skaters out there; it was our own private rink.

It's hard to put into words. You must remember, these are canals that people travel by boat. In the years I have lived here, I had not seen anything like this. How very strange to be standing in the middle of the water, gliding on skates over thick ice sheets, knowing that there are fish swimming under your feet.

It was the spark for life that I so desperately needed; at a time where I was losing my strength to keep fighting. The magic I needed to find again in the world.

Now I have a wonderful moment of joy; a snapshot in my brain of that moment of utter freedom and bliss. When I feel I am not strong enough, or that I want to give up; I have this moment - this feeling - this incredible knowledge that I can fly. And the magic keeps coming when you have lit the welcome lamps. I can find it in even the simplest things... such as the achievement of doing my exercises, or going for a walk, brushing my teeth without swapping hands... or posting here again!

Now the ice has melted and the canals are back full of boats and ducks. It's a little sad, but I am grateful for that slice of joy that the universe handed me. It has done wonders to helping me pick myself up again from the darkness; to put myself together again and regain that fighter within.

We have to live day by day, but sometimes it is hour by hour. If you have one good hour in a 24 hour period, then congratulate yourself and keep that memento for tomorrow; so you know what you want to achieve again. If you don't get that hour today, there is always tomorrow - maybe you'll get 3 hours to make up for it. Just maybe, you might exceed it totally and have a great day!

It's so important to take a quiet moment to stop and take a "photo", to stand there, breathe deeply and take in everything in that very moment. The smells, the tastes, all the things that make a memory vivid. Keep that warm memory as a lit candle to help you navigate through the darkness. 

"Please pain let me have a break for a few hours so I can do something fun and good for you. I will pay attention to you later, but just be quiet for me for 4 hours. After that, I will be happy to take care of you again".

Sometimes if I'm lucky, I can squeeze a few extra hours out before I have to give in to the Pain again. If I've done something fun, or had a good time; I don't really mind the increase of pain later because it is worth it.

I know they all say that: "you have to accept the pain..." blah blah. Sure... but I think it is too simplistic. I feel that you have to accept that it can be hard at times, but ultimately you need to live as best as you can, as much as you can. Live with the pain as though you are living without it. You can't be too hard on yourself for the bad times, you have to give yourself a break. I haven't "accepted" the pain in as much as I have learned to co-exist with it. I don't care if the Pain is there or not; I'll give it some concessions but in the end, I am the boss.

"And today/this hour/this minute is MINE and MINE ALONE Pain, so let me get on with it and I'll listen to you later!!"

Where do you find that joy? That simple pleasure that makes all the worries float away for a period of time. What can you do, to make those snapshots in your mind; your private nirvana to escape to when you need a break from it all?

Thursday, 15 March 2012

Finding the energy and being kind to yourself in an indifferent world...

I'm sorry I have been absent. It happens sometimes when you have barely enough energy to get yourself dressed some days, or even eat. It's when the times are bleak that you feel the weight of the pain so much more. Sometimes it gets weary, I don't like to dwell in the crappy things but there are times where it is kind to allow yourself a bit of "sulk time". It is ok to take time to take care of yourself, to nurture yourself by admitting that times are tough.

It's also hard when you know others are going through difficult times. It is hard to have friends, or people you know; who are facing an entirely different fight - one for their lives. It never helps to compare your suffering to another persons'; as it only makes for pity and bad feelings helping no one. Suffering is suffering, no matter the cause. However it does help to see that the world is much bigger out there, and more important things in life! Enjoying what you can do when you can, sometimes you forget your troubles when you're having too much fun!

I just get so tired, it wears me down. I get really negative, hating the world; I even find myself wishing I was normal again. Then I wouldn't need to fight so friggin' hard all the time! It's not only the fight of living a normal life; but it's the fight within - me against Pain. That fight sometimes spills out into the world, leading me to have some antisocial moods. I do wish I could be more stoic, but it is what it is - I can be a right bitch at times! It's hard to be around people, trying to act normal when you feel your control slipping away; your temper flaring along with the pain. With family and close friends, this isn't a big deal. They know what you go through, they forgive you for your impossible-to-be-around moments. They know I don't mean to be difficult. It's the general public that I can't deal with.

One of the reasons I find it hard to get out into the world; is the careless way people move through the streets and on public transport. While sitting on a bus some weeks back, a girl carelessly whacked her bag hard in my arm. She didn't mean it, she didn't even notice (nor care). But to me, that thoughtless bump gave me the sensation of my whole arm being shocked by an "electric" charge, taking my breath away in its intensity.

I regained control quickly, smothering the flames so they are just smoldering; but that momentary loss of my pain control cost me a lot. There is no avoiding this in the real world, I'm realistic and I don't have a sign on my head and I certainly don't want one! I'm not going to shut myself away completely. But I also cannot hide what does, in fact, hurt me a lot.

She got all nasty, talking about me with her friend, probably about me making a big deal from nothing (don't know, don't care - I have headphones!). Her disbelief is not that uncommon; many people have no idea that bumping someone can really hurt them. It is often rudeness and carelessness that do the most damage; curteous people still do the same thing at times, but they are often more aware of what is going on around them and consequently, don't end up hitting or bumping into people as hard. What is minor for some can be a big deal for someone else.

Had she had the misfortune of bad sunburnt once and had someone bump her, perhaps she would have more consideration. Thoughtless people like that are everywhere, they don't really matter in the scheme of things. It's a spike in the pain that happens often anyway, from walking into the door frame; or rolling over in bed. But that isn't from my carelessness, it's just a part of it all. But I still don't want it from the rude and inconsiderate people passing by.

Of course, it does make a difference if I'm "prepared" for it somewhat. When I do it myself by accident,  they tend to be things I could have foreseen. I am always more clumsy when I've got arm contractures. My shoulder drops down and my posture becomes crooked. Those times I stumble into things and end up banging my arm on something. Or my head...

I'm also bit of a bully. I push myself too hard at times, I'm not as bothered by short-term "spikes" (as opposed to the longer-lasting "flares"), though they aren't all that fun to experience. They can be useful though; be be sure that I have pushed 100% to my limit. Perhaps not the smartest way to handle it... pacing is better, gentler... but this is my crazy way. I experiment with things; noting down what I do and what effect it has; good and bad. It is useful for pushing the limits of what I can adequately do; it is also a good way to keep the training going and maintaining what I have.

It's a small, but valuable tool in my self-management kit - it gives me some control back. It allows me to build my tolerance, make goals, work out the most "efficient" way of doing things, while trying to minimise flare-ups. It also pushes me when I need a push, while being flexible enough to take a time-out or a longer break from it all at times. Learning to take those breaks when I need them, is a whole different story though... ;)

It can be all-consuming, any chronic condition can feel like you are juggling an extra job. It is much harder to escape your pain than it is to hand in a resignation. Meditation, yoga and dancing; some very useful and wonderful escapes from reality and into a place where you are free. My mother sent me a self-hypnosis Pain Management CD which I haven't tried out yet, but I have had hypnotherapy before. It's a great experience, one that I think has helped me a lot. Being able to meditate is something that takes a lot of practice, especially if you're like me and a bit neurotic!

Music is one of the big guns for me. It not only relaxes me to hear, it also gives me a world that I can enter during the bad times; where I can drown out the scream. I have playlists on my phone, of music to relax to; music to uplift me; and music for the pain. The pain songs are frequently played and ones I enjoy. I find that they somehow ease the burden; while giving me something to focus on that isn't the Pain. It doesn't really matter what sort of music it is, so long as it is something that lets you feel free. Something that moves you deep inside and makes your fingers and toes tingle. For me, it's classical music. I find the complexity soothing; helping me find the counterpoint of my very own, in the cacophony of thoughts and pain. 

My exam situation hasn't changed much, but I've let go of it all. I'm not going to let it get to me anymore. I think it really is a case of downright laziness rather than outright malice. This is what happens when you are in a "unique" situation that they have never come across before. I am certain that they have encountered someone with a disability before; only most likely they just gave exemptions because it was the easiest option, rather than working on a proper solution.

However, something much more serious than my own hangups over here is the recent funding cuts to educational support for children with disabilities. The support network of teachers, teacher aides and helpers; to assist these children in attending standard schools, many of which may not be able to without extra support. I am much more disturbed by this, than my situation. I can complain - loudly and often; I can push and fight. I have a voice and the years of experience dealing with crummy disability-related bureaucracy.

These children are going to miss out on the opportunities of a normal education, opportunities that will give them the best chance to become independent (and naturally, tax-paying) adults. Who is going to fight for them and be their voice? They are in a much worse situation than my inconveniences. 300 million Euros cut from those children who need the most help; many will fall through the cracks of an overworked education system. I understand that they need to cut back on spending; but choosing to cut spending in education, to cut 5000 teachers and support staff for the students who are the most vulnerable simply defies words. I will never understand their reasoning; how can they justify such a cruel austerity measure?

I was sick for a few weeks. My wisdom tooth really should come out, but for someone with uncontrolled CRPS... probably not a good idea until I have seen the pain specialist. Maybe it can be done, so long as precautions taken (extra vitamin C beforehand, different anesthesia technique). If I were normal, that tooth would have been long gone and sitting in my hand right now (I would love to examine my own tooth - freaky dental-nut that I am!). I get prone to colds and infections only when I'm doing too much, or when I am too stressed.

It was a wake up call of its own, to remind me to take better care of my mental, as well as physical, health. It made me bring the meditation back into my life, as well as the yoga. Sickness, pain, dark moods... sometimes they are only there because you're not paying enough attention to the things you should be doing for yourself.  Listen to the messages your body give - not just the whinging screaming stuff but the whispers that are often drowned out. Take care and be kind to yourself!

Sunday, 5 February 2012

Don't dis my abilities and how it feels to be discriminated against...

On 3rd November every year is the International Day of People with a Disability (IDPWD). New South Wales celebrates it with the campaign  "Don't DIS my ABILITY" celebrating diversity and the abilities of people who live with disabilities. I really like this campaign, I find it wonderful to have such a great celebration of all the things people CAN do, when the emphasis is continually on what people cannot do.

I have been quiet on this blog. Life has been throwing a lot at me, things that I wish like hell I didn't have to deal with. I have been feeling humilated, depressed and frustrated. Not because of my pain, nor from the challenges that normal living brings. The challenges are not from my disability, but from the way that I am "disabled" by others. The humiliation of begging to be able to have the same opportunities as people who are "able". The frustration of living with a condition that people have no understanding of; of having an upper-limb disability that is even less catered for than lower-limb impairments.  I am being discriminated against. And that, that is what is making me feel depressed about my life. It is an awful, terrible feeling. It makes me feel ashamed of who I am.

I hate being a victim. I hate being the person who has to bend over backwards in order to live a normal life in a world that is seldom adapted for me. Ever since I had my accident, I worked so hard to adapt myself in a society that didn't care about the "others". I worked myself to breaking point, just so I could find some degree of independence. I was not content to sit back and be a victim to my pain, and I never wanted to be "disabled". If I had any choice, as anyone with a chronic condition knows; I would certainly choose to have my arms back. To be able to do all the things that others do without thinking. But, we cannot turn back the clock, I can never get back what I lost on that fateful day.

Despite all this, I made the best of the situation. I live a good life with my pain. It no longer rules me, nor does it beat me. I have adapted to this new body quite well over the years. However, there are still things that I simply cannot do, and there are things that are possible for me to do, but come at the high price of increased pain and flare-ups of my symptoms. In extraordinary times, I can push myself if I must. The high price of pushing myself too hard, too often; is that I am seeing the longer-term damage it does to my body. Maybe had I not pushed myself to write with my left hand, I might not have problems in my only remaining good arm; no tendon damage now. But I also may not be living overseas, doing something that I love.

I do quite a lot with my hands. I do it because there IS something wrong with them; not just for my own pleasure. Use it or lose it baby! If I hadn't made all this effort to keep them moving as best as I can, I would be a lot more disabled today. It becomes rather consuming, always carrying some toy or ball to play with in my fingers; or finding new hobbies that will help me regain and exercise control of my hands and arms. It is more brain training than for my arms. The more I do these things, the better my symptoms are managed.

Lately, I've taken to knitting; my mother is a knitter as was her mother. It is a nice thing to do which connects me to the women who came before me. I recently have converted to "continental" style knitting, which is much easier (and quicker) on my hands. I spend quite a lot of time making fingerless mits and gloves - something I wear every day, winter and summer.

One of the things that I really cannot do, is write for long periods. I am a writer, so this is something I miss greatly. I use a computer mostly, sometimes even with voice-recognition software when I have some patience and time. I can write with a pen if I take a lot of breaks, pausing frequently to stretch and move around. I need to take my time with it. Considering I was a born right-hander, and my nerve injury was to my right arm; it is actually a miracle I can write at all!

I taught myself to write with my left hand, it was a very long process that took over 2 years to be at the standard that didn't make me want to cringe each time I saw it. People often are surprised at this, as are the doctors and rehabilitation therapists I've seen over the years. No one taught me, I did it all myself because I couldn't bear not doing something. It is one of my achievements I am really proud of. Try it - try to write your name with your non-dominant hand!

So yes, I can write. How well, or how long for is significantly less than it would be if I were "able". My tolerance is limited to about 10 minutes, maybe a page. More than that, or for a longer time makes my pain levels raise to intolerable levels and could set off a flare of my symptoms with contractures, less circulation (and very cold fingers) and a whole host of other weird symptoms not only in my arms, that last for over a week or even longer. Is that a reasonable thing to ask of me to do?

While studying law at university (a degree I have no intention of finishing ;) ), I had a scribe, a person who would sit there and write exactly what I dictated. It is strange, to have someone write for you. I found the experience a necessary, though less effective, manner of sitting my exams. It was so I would have the same opportunity to pass (or fail) my exams as all the other students had. It wasn't an easy option, as anyone who has dictated before would know. It certainly gave me no advantage over anyone; and on some occasions, was even detrimental. I once had a scribe who took it upon herself to scribble out notes before I had finished using them, or wrote differently to what I had dictated. If I had any other choice, believe me it would have been to do it on my own. But writing for hours, essays and structured answers; there was no other alternative.

Each time, I had to get a medical certificate for the exam; that it medically wasn't possible for me to do it any other way. Though the examining body were often unsupportive; they always did it, albeit grudgingly. There was no question of refusing, because as someone with a disability, I was protected under the Anti-Discrimination laws. They may not have been happy about making arrangements for me to sit separately; paying someone to come in and be my "hands"; but they had an obligation to allow me the same opportunities as every other student they had. To refuse would have been against the law, it would have discriminated against me and my impairment. At the time, I found it distressing, all the trouble I had to go to for them; feeling at their whims as much as I felt at the whim of the insurance body covering my claim. These days though, I look back with some nostalgia and even admiration. They may not have liked it, but they did it. They allowed me to sit my exams in the most equal manner possible.

I have been following a Dutch language school, now that I live in the Netherlands. The Netherlands is a land that believes it is all inclusive, everyone is equal. However, my experience over the last year or so only shows me that they are even further behind than Australia. I am obligated to follow this course for "intergration"; for my residency. I have been intergrated for some time now, I have always made the effort to speak the language, even when my skills were not that good. I chose to live here, in a country with a new language. I chose to live here because I believed it to be a land where diversity is celebrated, a progressive land.

Before I began lessons, when they were assessing our language skills; I told anyone who would listen that I would need help when it came time for exams. I am physically unable to sit a written exam unless it was on a computer (and even that isn't easy for me). At each step along the way, every single appointment, I made it very clear the extent of my disability and my willingness to provide medical reports and evidence of what I was saying. I had been through it all before, I knew what my rights were and what could be done. After all, we are in the 21st century, surely handwritten exams are going the way of the dinosaur in this modern age of computer literacy.

I was the best student in the class. I was already semi-intergrated and I had a wide vocabulary and participated in Dutch society. I worked hard. I got results of 100%, 90% in school exams; I knew what my difficulties were and I studied very hard independently in order to succeed. I even started a course totally in Dutch (as a dental nurse - yes, a job that uses my hands but one much more suited to my abilities than working on a computer day in, day out - I learned the hard way there!). I completed my practical training completely in Dutch. I followed Dutch news, watched and listened to Dutch programs; had Dutch friends... I don't know if I could have done more to fully intergrate. Isn't that the goal of the school?

Every time I tried to find out information about the exams, I hit brick walls. No one knew anything. I can't begin to list the people I spoke to along the way, the number of phone calls and even fronting in person. My teacher even wrote emails on my behalf, which lead no where. No one ever got back to us, no one had any ideas. The best answer I got was "after you sit your exam, then send a letter from your doctor and then you can do it again". That was not an option. No one understood, nor had any idea of what they should do for people with disabilities.

The time went by; all the unanswered questions. I wanted clarification on what medical information they needed. I went to my GP doctor, who was understanding and tried to do all he could to help me. It was only in the week or so before the exam that I gave up on finding out and just submitted a letter from my GP. I told them that I would not be sitting the writing exam until they made arrangements for me to do so. I told them I have been waiting for a year, I had informed them many times. I sat the other components of my language exams (listening, reading and speaking); leaving the writing exams until they had the arrangements made. This was back in October.

A month later, I got my results. I had passed - easily. My results were very good, as was expected by me and all the hard work I had put into it. I felt good about it, though it was marred by the fact that I wasn't able to celebrate passing all four components like I deserved. At the time, I was confident though. I felt that my results spoke for themselves, and that they would realise that I was not doing this for any other reason than because it was absolutely necessary. I didn't like how they were implying I was trying to cheat, or worm my way out of it. I always wanted this exam, I want the marks I deserve. I want the diploma, as has been my goal all along.

Sometime in December, they called me. It would seem that the letter from my GP was not enough, they wanted something from a specialist. Ok, I had that. I had a report from my specialist in Australia, an associate professor, who was one of the top pain specialists in Sydney. It also stated my tolerance for writing being an A4 sheet. I had a report form my "bilateral upper-limb assessment" which was done in 2004, which was a 10 page report, detailing what I was able and unable to do with my arms. Very clear, a lot of evidence. English is widely spoken here. All of my official papers, my birth certificate etc, were all accepted in English without a translator. So, I fully expected that my reports would be accepted, I even underlined the important sections for them to assist their "disability" in not understanding medical english.

They refused. Flat out refused. I got them what they wanted and more, and it still wasn't good enough. They refused to accept over 12 pages of medical reports from specialists and occupational therapists. In English, sure, but it's not unusual - it's not Chinese! All these documents stating what I have, a permanent impairment, that I live with severe pain, that I take medication. It wasn't good enough for them. I had jumped through hoops for them, done ten-times more than what was expected.

They were unwilling to allow me to use a computer for my exams - computers that we did all the other exams on. Next year (2013) they will be doing the writing exams on the computer, so it's not like I'm asking for something outrageous. They wouldn't budge an inch, there was no flexibility, nothing. I didn't know what to do. I felt my world was crashing down around me. I felt so ashamed to be in this position. I felt like those dreams I had of finishing my diploma and finding work in Dutch society (as opposed to the much easier expat English-speaking world) were never going to happen. Not for anything I had done wrong, but because of who I am.

I am a person who lives with an aquired disability, a chronic pain condition.  I cannot physically do what they want me to do, no matter how much I wish I could. And they are making me feel like it's all my fault that I'm in this position - my fault for having something wrong with my arms.

I found an organisation for people with disabilities. Finally now, I feel I am getting somewhere. I feel I have some support, an advocate if you will. Someone who understands how unreasonable this is, and who believes they are discriminating against me. But she is hitting the same walls as I was.

What has really sent me into a dark place over the past month is the way they are treating me. I received a "certificaat", which is what they send to the people who pass in 3 components and fail the 4th. I didn't fail, but I'm being treated like someone who has not passed my exams! It is humiliating, watching all the other students I did the lessons with; able-bodied and getting their exams, while I am treated like I failed, and not allowed to have the same opportunities as them. I also received a letter telling me that they have decided to extend my deadline to complete these exams. Threatening to fine me or worse if I do not complete it in this new time period. Like I have any choice in this matter - all because they do not work by the laws of the land.

It's just awful, it really has taken me to a blacker place than the pain does. I can live with pain, I cannot live with being treated so poorly because I have a disability. I don't feel any different to the person I was before, but it seems that the world only sees that difference. Disabilities and chronic illnesses are covered under the law here, but I don't feel protected when an official (local government) body is being so blatantly discriminatory. For the first time, I feel ashamed to have what I have. All the hard work I put in, all those hours of study mean nothing when you are not given the chance to prove it. If I was able-bodied, I would have my diploma and be laughing. The only reason I do not have that diploma in my hand is because I have a disability. Or maybe foreigners don't have disabilities in their eyes... or don't have the same rights. Maybe they're just uneducated in their own laws. I really don't know - nor care - why this is happening. I just want what's right.

It's funny, they too have an anti-discrimination campaign here which I like (see here - in Dutch, but you can see the pictures) People hold photos infront of their faces, of "normal" people, what the world wants to see of them, rather than who they really were. Like a woman in hijab holding a picture of a woman showing her hair and face as she walked down the street. Or the gay couple holding pictures of a man and woman over their faces. I thought it was a great campaign, showing what discrimination is all about. Little did I realise that I would become someone who needs a picture of an able-bodied girl with acceptable arms to carry infront of me. I had no idea that I would be one of those people too. I never dreamed I would be in such a position. I thought that hard work would get me to where I wanted to go.  To have the same chances as the other students I studied with.

It sucks big time. I'm sorry I've been quiet, I had written a few pieces to post here, but the battle against my pain and the shame have been winning. But in the end, they really messed with the wrong person. They won't know what hit them when this is all fixed up! I have some support now with the organisation. I don't feel so alone now and I will fight them until I get my rights back. They have no idea the sort of person I am. I studied law in the first place because I saw so many vulnerable people being trodden on. And I won't back down! I will win in the end and they are going to be hit by one of my long critical letters stating EXACTLY what they did wrong, names and dates. I will not take this quietly! They will wish they had done their jobs properly first time around. I don't tolerate ignorance or bigotry lightly. 

I will win!!

Friday, 13 January 2012

Body in Mind - Luke Parkitny

It is well established that pain is in the brain. But what happens in the early stages of CRPS to turn a minor injury to something so devastating? 

Luke Parkitny talks CRPS at Body in Mind

He is looking into whether there are inflammatory factors involved in the early stages of the disease.


Friday, 6 January 2012

Looking out for a new outlook - new year, the dawn of change...

New year is one of my favourite days of the year. It's the day of resolutions, of dreaming of what the future will bring. Of hoping that this year will top the last. Usually I don't do much at midnight, but my favourite thing is getting up at the crack of dawn to drive to the beach with my mother in Australia. We stand there in the the semi-light, watching the sky get brighter and brighter. All of a sudden, a sharp shard of sunlight would break over the mountain and paint the ocean in shades of orange and yellow. 

Getting up for the first sunrise of the year was always something special with Mum. We love the beach, and to see the very first time the sun graced the new year; before it hit anywhere else in the world (well, apart from New Zealand and the other Pacific Islands on our side of the date line!). It always brought me a lot of hope for what the new year would bring. Of course, sometimes the new year brought in more difficulties. Nonetheless, I always had a small wish for the pain to go away; that maybe this year would bring remission from my symptoms and less pain. That has never happened. However, from the sunrise of 2011; it brought with it a big change in my attitude. Passing my 10 year mark really changed how I viewed my life.

10 years was a huge hurdle. Once I reached that; I knew that life would never be so difficult as it was during the first decade. I know myself a lot better now; I see how far I have come. I've done more things than I could have ever dreamed of. I know my condition much better than anyone, doctors included. I am finally in control - not of the pain, but of how I manage it - I am in control of my life!

However over the past few months; my strength has been tested. I have been really struggling for a while. Mentally, I feel powerful but it is a very hard fight against the pain. The mind is sharp but the body is broken. More nights of tears, more asking the help of my dearest one; try as I might to do things for myself. Sometimes the veils of hopelessness have been working their way into my days. It's hard to remain optimistic when the pain is screaming so loudly. Sometimes I just want to scream. No matter how loud I scream, it will never drown out the pain.

The symptoms are getting worse. I can't pretend they are not, like I did last time. It nearly destroyed me with all the effort to lie to myself and others. I am struggling right now with terrible allodynia, where I cannot stand anything; clothes, sheets, or people touching my arms. I get pains in my legs too, though intermittently and less severe. Sometimes I get patches of the allodynia on my thighs, which is uncomfortable to say the least. More contractures, "dystonia"; which is where the muscles tense up and shorten. It contorts my arms and body, affecting how I walk; dropping my shoulder and making my hips unbalanced. My shoulder rotation is very limited. I end up all crooked, my hand curled up like a claw and my arm bent painfully into a wing - my chicken wings!! I get strange twitches in my muscles, sometimes you can see it jumping through my skin like there is a bug underneath.

My left arm gets worse from overuse, using it for everything. It always makes everything more difficult. When I have a good left arm, I can do everything. When both arms are buggered, it makes simple things a huge struggle. That perhaps makes it all the more difficult mentally to deal with.

I've also been swearing too much! There is something pleasurable about uttering curse words that somehow, makes the pain more manageable. Of course, muttering swear words to myself is never a good look; like one of the muttering old ladies with her cats and shopping bags. It makes me walk like a cripple, body contorted from the pain. It really has turned up a notch, I can't seem to get my pain levels below 8 at all. Months of this... I hate the word "agony" because it is an emotional word, a negative and helpless word. But it is my reality.

Recently, I decided that it was time to fight again. I go through stages where I cannot fight anymore, I can't bear the constant failures that come with trying new things after having the hope that it might be the thing that makes the difference. It wears on you mentally. As a perfectionist, I don't take failure easily. I decided to start coming off some of my medications, and to try a new one. Sounds counterintuitive, taking less when things are so bad; but I feel that the old ones are not offering the stability that they used to.

It was a difficult decision to take medication in the first place, after living with this condition for so many years without it. I knew from the start that most medicines did very little, so I went without. It was very hard for me to change and not see it as weakness, accepting medicines. There is no medication that takes the pain away fully; but it gives me the stability that I desperately needed; to make my life with the pain. Stability is essential. If the pain levels are constant, you can do so much more. The fluctuations are what makes my life unbearable. 

I started retraining as a dental nurse over here in the Netherlands last year. I love it, it gives me a lot of satisfaction to see that there is a world out there of normal pain; pain that can be cured and relieved. It gives me hope to see that we can help our patients and make their lives better. It suits me a lot more than working behind a desk, or in law - a career path that rarely makes lives better. It is a job of varied movement; where I can work mainly with my left arm, giving my worse arm a break. Though over the past months, I have had doubts. A deep fear that maybe I am wrong; that I may not be able to sustain this job either, in the long term. Another dream that could end up in tatters; not because I do not have the intelligence, or ambition, but because of my stupid arms. 

There is nothing more frustrating than having that drive to succeed and the body that simply won't do what I need it to do. Recently, I gave my doctor a long and detailed report on my condition; what symptoms I have; why I believe it is getting worse. It was important for me to demonstrate that what I am experiencing is more than a simple flare up, and why.

It was also good to see all the things I do to try to stay on top of it all. I have so many tricks up my sleeve! I am so used to the pain that it can be difficult to see the subtle difference between a flare and the worsening of symptoms. It is sleep that makes a difference for me. When I notice my sleep is terrible, that I cannot stay asleep during the night, woken up by the pain; that's a clear indication that something is wrong. Needing assistance for simple tasks, relying on my tools more. These are also clear signs. 

My dear fella, my partner, is as much a saint for knowing how to handle me; as are my dearest mother and brother. These very special people know how important my independence and normality are for me. They don't give it attention, they don't baby me, they just help where it's needed and get on with life, no big deal. They don't feel sorry for me, perhaps that is the most important.

Often, there isn't much they can do anyway; except be there for me, make a cup of tea or dinner.  My dear fella sometimes just holds my left hand, or plays with my hair as I sit there fighting the pain with all my strength. He helps me with my massage, stretching out my arms to try to lengthen the muscles again so they won't curl up. That physical contact giving me energy, he performs Reiki on me without even trying. It gives me so much more than he realises. Something so simple can be the biggest help. We all make jokes about it, seeing the lighter side of something that could very well destroy me if I let it take over. 

I cannot imagine how others view me. How it must be for him; to see his loved one going through this. To not be able to hug me, or touch me. How I would love to be able to do such a simple thing as to shake someone's hand, or to hug someone without it hurting. I want to look for work, but how can I job seek for such work when I can't even shake the interviewer's hand? How can I look them in the eye and tell them that I can do this job, when I'm struggling to button up my jacket or eat with a normal knife and fork? I have worked so hard for this, I cannot afford to lose it when it is so very close now. 

That is why 2012 will be a good year for me. I am going to change my medication fully, I am going to explore new options again. What will be different is that my attitude is different. If surviving 10 years has taught me anything, it is that I can do this - I can make my life with the pain. I am going to explore these new option with a totally different mindset - no expectations. If I go into it with no expectations, perhaps I can afford to have a little hope. I will take setbacks in my stride, I am not losing anything by trying. All I know is that what I have been doing is no longer working; I knew that day would come. CRPS isn't normal pain. All medications have limitations, and the body gets used to it. Every so often, you need to shake it all up; change doses; change the way you handle things. 

I'm going to shake this house of pain up so much, it won't know what hit it! I am much stronger than the pain, I have too much going on for me that I simply don't have time for it. My new years resolution will be for my strength to stay powerful, my drive to succeed, and laughter to conquer the pain. I wish I could be normal, just like everyone else... But this new year will be the year that I beat it once again, and remain on top!

Happy New Year!

Saturday, 17 December 2011

Dancing away despair and putting pain in its place...

With the past few months of flare-ups in my pain and the intense allodynia (pain from harmless things touching my skin, such as clothing or bedsheets), I haven't been my usual cheery self. However, I wouldn't say I'm depressed, nor even all that negative at the moment. It's interesting to note that I'm going through what I went through 3 years ago, but back then I was deeply depressed and suicidal. I felt I couldn't do it anymore - I couldn't live with this pain.  

Of course, over the past few weeks, there have been some tears, some cranky moments and some times I wanted to give up completely. I've had times where I've become so overwhelmed again by the weight of my pain-companion, that I'd bawled like a baby. I do feel hopeless on occasions, though these days I know that is only temporary. Sometimes I lose my control purely from the frustration I feel. 

I get in these moods where I stubbornly and rudely refuse any help, then end up bursting into tears from my own pig-headedness. I get into a mindset where I MUST do whatever it is, no matter how ridiculous or unnecessary. For those close to me, they would have seen this behaviour many times. Where they watch my pathetic attempts to do the simplest of tasks; "no I can do it ON MY OWN thanks!" while struggling to open something, or carry a bag. I can be downright rude, which isn't something I'm proud of.

It is usually something that they could very easily and very willingly do to help me. When they do help me out, I sometimes show some real ingratitude, which isn't good. Of all the times they cannot help me nor take away my pain; opening a bottle or chopping food is certainly do-able. I forget that my pain is something they live with too. I'm not the easiest person to live with! And if I graciously accepted their offered help, I would save my energy for the other tasks; the more fun and interesting things I do. Surely that makes more sense than working myself into a state!

I see myself doing it; I know how ridiculous I look, digging my heels even deeper into absurdity. But why? Wouldn't it just make sense to allow my nearest and dearest the opportunity to help me in a very real and tangible way? Especially when they feel so powerless at other times. They cannot take the pain away, they cannot make it all better, but they can easily help me carry something and often they like having the chance to help me out when they can.

It's interesting, I haven't really thought about it much before. I've only known that there is simply no other choice for me. In my head, this ridiculous struggle is between me and my pain; it's all I have left between staying strong or giving up. I am very black and white, it is or it isn't. If I'm strong, then I will just find a way to do it, dammit! If I accept help in such a simple task, then I'm giving into the pain and admitting I'm weak. 

Yes, I know it makes no sense! Hey, I would never think any less in someone else asking for help; help I would gladly offer and do as much as possible for them. But, this is just how I am against myself. I feel that for me to ask for help, all the strength I have built in accepting and living with this condition would crumble to dust. A gust of wind to my house of cards. All over red rover!

I am my own biggest bully. There are some things that I simply cannot do anymore, there is little choice in those matters. But for the things that are possible, I don't make excuses for myself. I am either going all-in or folding. Particularly when my symptoms are quite severe, sometimes the only thing that holds me together in that moment is this one small, insignificant task. It becomes the only thing that matters. If I fail to button my own jacket, then I fail at everything.

It gives me a focus point, something to focus all my being on. Focus is very important to me. I am very goal orientated. I like having a goal and achieving it, it makes me feel powerful. It makes me believe in what I am doing. Sometimes there are no second chances - do it now! 

With the belly dancing years ago, we thought it may be something good for my arms. I was in the Chronic Pain Group with Coralie (Chronic Pain Australia) at the time. She suggested tai chi as a 'flowing' mindful therapy to help me reduce the guarding of my arms and get some natural motion back. At the age of 21 or 22, the only picture I had of tai chi was the groups of old people in the park - not my scene at all! My mother suggested belly dancing and we invited our wonderful neighbours to come along too. It sounded like a fun way to get my body moving. A good way to re-establish movement in my arms. 
St Albans Folk Festival

Good it certainly was. It was one of the best things I've done, both physically and emotionally. I do believe that dancing is one of the best things that anyone can do, pain or no pain. I also believe that I would be significantly more disabled now had I not done those years of dancing. There is no better way to laugh at yourself and see the lighter side of life! Mindful movement can benefit everyone.

When I got those opportunities to dance, sometimes even paid jobs; it was almost too good to be true. I hadn't been dancing for long, but I devoured it in the same way as I do many other interests. I become obsessed, a dancer possesed; learning all I could. Watching carefully, practising in front of a mirror for hours upon hours; determined to make my arms move as naturally and normally as possible. I would stare long and hard at other peoples' hands and arms, (a fetish I still have to this day!) watching how they moved them. The dance movements themselves were already something I felt an affinity for - moving my hips certainly took attention away from my arms. I would do anything for that! 

As time went on, I became very skilled with "blending" my arms in. It was my goal after all. If I cannot get rid of the pain, I needed to somehow take it out of my identity. I wanted to be me, not "the girl with the dodgy arm". The rhythms and movements came somewhat naturally to me, certainly more than pop music dancing ever did. I found a great deal of freedom in this dance form. I liked the complexity of the rhythm, the interwoven melodies and changing tempo. I would study this music intently. I realised that if I learned the rhythms intimately, it was a skill I could apply to all the songs I heard. It became intuitive. It also helped me learn how to improvise, never one for choreography; improvisation had a freshness and energy which I thrived on. I loved the challenge, the feedback from the crowd was excellent! I loved getting people dancing too; though I'm not a teaching type. it was always wonderful to see when someone would get the moves, the look on their faces was fantastic! Dancing is infectious!

I went all in, and I was so lucky to get the opportunities I did. Deep down, I knew I had to do all that I possibly could at the time. I may only have one chance at this - go for the stars. Deep down, I also had the fear that I may get worse in the future, and I wanted to have some great memories of what I had done. I wanted to have no regrets, no "what ifs". I certainly didn't want to see things I could have done but didn't, because of the pain. If I had to live with this pain for the rest of my life, then I was going to do everything I can in this life to make the pain somehow worth it. The pain was NOT going to win!

I started to dance with a sword balanced on my head, or a cane which I swung with my left arm. These were flashy props to dance with that looked great. Most of all though, I realised that if I was dancing my heart out with a sword on my head, no one noticed my floppy right arm. No one in the audience was looking and thinking "oh look, nice sword but she can't move her arm properly!". I loved it! It really gave me so much, this dance form! 

  I also used zills, or sajat, which are finger cymbals. Though I had no hope of really performing well with them, they were a useful tool to train myself with. They helped me connect my brain with what my hands were doing, by giving me a non-visual clue as to what my arms were doing. I put my hands behind my back and would try to make my usual rhythms. Without watching my hand, I could hear what it was doing. I pushed myself to get it right. I was not going to accept anything less.  

My brain's connection with my right arm was and still is, very limited. If I can't see my arm, I have no idea where it was in relation to the rest of my body. While dancing, if I was consciously moving my arm either in my direct or peripheral vision, I could move it somewhat normally (though not with the grace of my left arm). When it went out of my field of vision, I had no idea where it was or what it was doing. My "floppy arm"! The greatest success for me wasn't the dancing itself, it was learning how to disguise my pain. And that made me feel wonderful! I was a belly dancer, not someone with a disability. For that short time, I wasn't someone in pain. 

When you do something that you love, the pain becomes less important. Sure it's still there, but it's not all of your being. Any flare-ups of my pain or symptoms were simply the price of doing what I loved. I was prepared to endure the flare, the increases in pain, in order to do something that gave me joy. I paid a high price for it, but nothing in life is free. It's a matter of bargaining with the pain. "Dear Pain, allow me to do this right now, and I'll pay attention to you later".

The show goes on, the cost of it was a price I was willing to pay. When I have pain when I do nothing, and pain when I do something; I'd much rather to have a good story to tell for the increase of pain, than to experience flares when I take all the care in the world not to. When there is no purpose, no reason for the pain; it is depressing. I learned long ago that flare ups happen for me even when I do nothing. It is something that I don't have any control of, you can't take preventative measures when it's so unpredictable. 

When you have no control over the pain, then take control of what you can. Make your own joy and pleasures, and put the pain in its place!  

Thursday, 15 December 2011

Lorimer Moseley on TEDxAdelade

Pain is in the brain!!! This bloke is great - one of the leading minds in the understanding of pain!

My story for National Pain Week in Australia and celebrating milestones...

Some months ago, I wrote my story for National Pain Week in Australia. It was something that really opened my mind up to writing this blog. When I looked back over all that had happened over the past years, I saw just how far I had come. And I realised that life will never again, be as difficult as those first years were.

It was a big thing for me, reaching this point. Back when I first started experiencing these strange symptoms and pain; I couldn't even contemplate next week, let alone a decade. I never thought I could do this, live happily and with so many good things in my life. And there it was, in black and white, all the things I had done over those years. Some very dark moments, some times of utter hopelessness and despair. But there were also some really bright and colourful times, some massive achievements and incredible experiences!

What a happy coincidence - having my 10 year anniversary during the first National Pain Week!! I often celebrate my anniversaries, buying myself a present, or doing something special. Some people thought I was mad, or being negative or depressing; to remember the day that changed my life so drastically. I don't care what they think - each year I survive another 365 days in pain is another year that some people don't have. Too many people take their own lives every day, to escape the harsh realities of living with uncontrolled severe pain.

Besides, I celebrate each milestone because I have done so much with the pain! Being in pain all the time taught me about life, about living each day to the fullest. It has made me who I am now, today. I know that there is no limit to what we can achieve if we set our mind to it. When you hit rock bottom, the only way is up! Some days, it's a major achievement to get out of bed or to get yourself dressed; other days it's learning a new and different way to manage your condition. Each of those achievements, no matter how small, should be celebrated!

Life with pain doesn't have to be a life of suffering! The world is full of colours to paint over the blackness of despair!

Some links: 

My story:
Making Peace with Pain - Chronic Pain Week

Chronic Pain Australia - check it out, it's an excellent resource!
Chronic Pain Australia

Why blog, why? Maps, Aliens and brains...

I love this age!! I'm very new to blogging, but I always loved reading other people's. I love that it is possible, in today's world. It's a magical medium; where people can write about whatever interests them, getting it out there in the world, sharing the knowledge. I never saw myself as a journalist, nor did I think I had something interesting to blog about. Sure I've always written my journals: travel journals; thoughts and feelings. But I always saw myself writing a book, rather than a blog. 

However of late, I've noticed just what a bore I've become. My long suffering family and friends, always listening to me whinging about my arms, about the pain. There was nothing they could do to change it, and a decade of it meant that they often hear me complaining about the same things. I've become one of those annoying repetitive people always whining about the same stuff. It would become rather boring for them, for me too. For my other friends, I try not to talk about it too much. Partly because I've never been entirely comfortable with what I have. I hate admitting to weakness. They ask me what is wrong with my arms, each explanation comes up short. It's complicated, many different processes at work. When I do go more in depth and detail with the pain and limitations, they end up either not understanding, or shocked... 

So, this seemed the perfect medium. A place to talk about it; what I go through every day. A place to share all the crap, all the funny things and to unwind. To be the "Jane in Pain" and not the Jane of my normal life; where I try very hard to keep it invisible.

Plus, there is always a funny side to things. Sometimes I feel utterly ridiculous, some things that happen seem too absurd to be true. Like I'm in a cartoon. Last week, I was reaching up to get the flour down from a shelf in the kitchen. My left hand slipped, and I ended up wearing a container of flour all over me like some sort of weird, powdery ghost! Or the endless plates and cups that have slipped from my hands, the bottle of water that I knocked over my computer last week, making me employ the old bag of rice trick to dry it out! And that's not to mention all the times where I would be mid-sentence, talking about how my arms are bad on a particular day; and then I end up knocking my arm against the table, the door frame, or whatever else that makes the pain a hell of a lot worse (or gives a good bruise on my shins!) The universe likes to play tricks on me!

After a decade of pain and limitations, I have my own bag of tricks at my disposal. I've figured out alternative ways of doing even the simplest of tasks that previously eluded me. I have gadgets, tricks and hacks to pull out of my hat; which means that there isn't really much that I cannot do! 

As an artistic type, a good part of my recovery had a lot of drawing and reconnecting with these hands, my enemy. Painting pain often creates some of the best creations; and by turning pain into art, it soothes the soul. When I was teaching myself to write with my left hand, I was often frustrated by the childish scrawl I was producing. It was so much more difficult during those early years, when I didn't really know what I was dealing with. Back then, I certainly couldn't imagine my life down the track, I never knew I would be able to survive for so long with the pain.

One night, I was so frustrated with my efforts, wanting to give up. I decided that perhaps the best way for me to tackle it would be to try drawing. I used to draw, and quite well. My first scribbles were devastating, I was so disappointed I wanted to cry! But I kept at it, and in some ways drawing was easier to me than writing, because I didn't have to have such fine control in order to create legible script. I could go over previous lines, refining them; the shapes make themselves from my eyes.

I managed a series of self-portraits; not quite Frida Kahlo, but decent sketches which were obviously of me (or someone, at least!). What was evident to everyone else but me; these drawings had NO RIGHT ARM. I was Venus de Milo! Where the hell was it? I didn't even notice. I didn't consciously draw like that, I was just desperately trying to do get pencil to paper. It was like someone got a big eraser and rubbed-out my arm. It was no where to be found. I could see it when it was pointed out to me, but at the time I did those drawings, I saw all my limbs in the places where they were meant to be! 

So, where did my arm go? When the body is in chronic pain, the brain goes a little loopy. From the work of the American-born Canadian neurosurgeon Wilder Penfield (1891-1976) in treating epilepsy patients; he was able to build maps of the sensory and motor cortices of the brain. This man was really something, his approach was way ahead of its time, very practical and groundbreaking. His life work was based upon the functioning of the mind and whether he could find scientific basis for a soul. His legacy, among other things; was the "cortical homunculus", which is a pictorial representation of the the body; still in use today. A map, if you will; of how the brain makes sense of all the sensory (and motor) nerves in our bodies. It's not a literal representation, but it illustrates the relationship between the parts of our bodies that have lots of nerves and that we use all the time and therefore need more connections with; and the parts that have nerves, but are further down on the priority list. 

It's a freaking alien map too! Like someone drew it without knowing where the parts of the body go; a Mr Potato Head put together by someone with a blindfold and gloves!! Legs higher than ginormous hands, lips and tongue. What it conveys is the sensory connections between those parts of our bodies and our brains. Lips, fingers, thumbs (and  of course genitals) in particular, are somewhat bigger because there are more sensitive nerves to convey sensations. They often are parts that we use all the time (and hence, we need to interpret a lot more information from those parts of our bodies). The parts of our bodies that we don't need a lot of information from, like thighs or trunk; are represented much smaller. We don't need to know how to type with our toes, or turn a key with our knees!! 

In drawing myself without arms, the picture my brain has of my body has been distorted from the pain. My brain cannot sense my arms properly, because all it gets from that part of my sensory map is pain. The other input, the touch and proprioception (where is my arm in relation to my body) are lost within the cacophony of pain signals. How cool is that? My brain has a much different picture of my body than what the world sees! And to draw myself during a desperate moment in order to stop going crazy, I end up with these crazy pictures. 

"Where is your arm?" "What arm?" Haha! Neuroscience is pretty damn cool! I just hope I don't sneeze one day and have this freaky armless alien pop out of my nose!! 

More info:
Cortical homunculusTopographic map (Neuroanatomy) (wikipedia)