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Living with Chronic Pain.

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For a while now I've wanted to create a journal as such for myself about my experience with chronic pain. If it helps others understand or someone who also suffers then that is great, but that's not why I'm posting this.

For 13yrs now I've suffered from what is known as chronic pain. This is a result of a motorcycle accident in 1997 where I paralysed my left arm. The cause of this is known as a 'brachial plexus avulsion' injury. The brachial plexus is the group of nerves that run directly from your spine, namely c5, c6, c7, c8, and t1. More common injuries to this area can be repaired either by intervention or naturally, however in my situation the nerves have been torn away (avulsed) directly from the spinal cord. This currently is not repairable, and is the cause of my pain.

I have become a bit of an expert at gauging pain over the years, using the 'out of ten' scale. Chronic pain sufferers have symptoms 24/7, we are pretty much never not in pain. For myself, my pain has an average of about 7/10, never less than 4/10, and (although I have never counted them) I'd say at least 200 times a day spikes over 10/10, up to about 13/10. 4/10 is great, there is only a dull throbbing reminder of the pain. 7/10 is pretty intense, starting to affect my thinking and physical position. Anything above 7/10 is now getting very uncomfortable, and when I hit 10/10 and above I get swamped with intense feelings of pain that can switch me off.

I should try to describe the pain I suffer from. Like I said, 4/10 is no drama, just a throbbing. But anything above that, any one of the following (and any combination of them too) start to attack me. So here goes, burning is pretty run of the mill. It constantly feels like my entire arm and shoulder are on fire. The next step up from the 'fire' feeling is the 'molten metal pumping through my veins' feeling. This only occurs occasionally I should mention, maybe only a few times a week. But it is incredibly intense, not only the intense burning but a feeling of incredible pressure within my arm. Other feelings include, crushing, grinding, stabbing, stretching (this one is cool, feels like I have a metal rod in my arm with spikes on it that is stretching inside my arm tearing it apart), it feels like my hand is grabbing a sharp hot blade, intense pressure in my arm and shoulder that makes me feel like I'm about to explode. Feelings of my elbow being crushed in a vice, my shoulder as well. There are lots more, but these are the ones that stand out the most.

When I first had the accident, I was on 35 pain killers a day. However the pain kept getting worse, so I spoke to my specialist at the time about it, and he told me the only option was to increase the dosage. It was then and there I made a major decision. I decided to do away with all my meds and beat this with mind power. Like they say, the hardest road has the greatest rewards, and my rewards are many. No longer do I have to constantly dope myself up with soul-destroying drugs, no longer do I have to make sure I carry a days supply of pills on me, no longer do I have to remember to take them at the right times, no longer do I have to be careful about who knows what pills I'm taking. And through years of dealing with this, my pain threshold has risen dramatically. Stubbed your toe? I don't even notice. Cut yourself and your bleeding on the floor, I wouldn't even notice until I stepped in the blood. And mentally it has made me very strong. I try not to let my expressions etc show the degree of pain I'm in, to the point that even my g/f and friends can hardly notice, unless it's above that 10 mark. I've had to develop ways of 'living a normal life' without bringing others around me down with my pain, so I now feel if I can over come that, I can over come anything in front of me.

Eventually pain becomes your companion, no longer your enemy. It never becomes your friend however, but you can use it for you instead of letting it work against you.

So for 10yrs now (as long as I've been off meds) I've been able to control the pain through mind control 95% of the time. However, I had my first road bike crash in 13yrs back at xmas. I got highsided off and flew into a traffic light pole at about 50-60km/h. I broke my left arm (the paralysed one) and fractured my shoulder, didn't know about either until 10 days later lol. My body has healed from that of course, but I have ongoing issues from it. The spikes I mentioned earlier, well prior to my accident at xmas they lasted anything between 3 to 30 seconds. That I could handle, that I could hide from others and not let it interfere. Now however, those spikes now last anything from 20 seconds to up to 10+ minutes. And this I just can't hide. However, thanks to the longer duration I can now learn more about the extremes of pain. Spending minutes swamped in extreme pain that you can't fix or run away from, you have to allow yourself to give up the fight and let it do it's thing. So I reach a higher plane now, a plane that is unattainable to most people. It's amazing to be honest, but unfortunately indescribable. It really adds meaning to the saying 'thin line between pain and pleasure'. It's almost addictive. But mostly it's terrible. However, I know my pain threshold will rise again, and I'll learn to control this new level I've reached. But it is very very taxing, and unfortunately something you have to do by yourself. Which in itself is hard when people close to me see it and want to help. I understand their intent, and am thankful. But I also don't want to bother them with my situation.

And that sums things up well. Pain doesn't describe me, it doesn't make me who I am. However I can not deny that it is now me, that pain is a big part of my life. My g/f apologises to me about my pain, or sometimes makes exceptions for me. I appreciate this, but to be honest I find it pointless. The spike I'm experiencing will go away yes, but it will be replaced by another in a few more minutes. So as best I can, I just have to carry on. It will never change, so either I have to or I have to just accept it.

That's all for now. If you've read this far then you have my deepest apologies lol. However if you have made it this far, it might be because you too suffer from chronic pain or know someone who does, and you might be looking for a nugget of information that could help. Well I can offer this. Do not fight the pain. Do not put mental energy into fighting a losing battle, as this will only wear you out both mentally and physically. Give up the fight as soon as you can, let the pain wash over you. It will not kill you, and when you truly let go your mind will handle things all by itself, believe me it's better at doing that than you are. I suppose I could also say, appreciate what you have. No matter your situation, there is someone out there doing it tougher than you. So pick yourself up, appreciate life for what it is, make the most of your situation. There is life with chronic pain. You just have to try a bit harder than most other people. But at least you still get to try.

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  1. AxN's Avatar
    Having had privilege working with people who have chronic pain, I have immense respect for your courage in managing your pain. Not many people has the mental tenacity and capacity to be able to withstand the amount of pain you described in your blog. Hats of to you, hope you get given the chance to be involved helping and educating others to manage their chronic pain. (Burwood hospital's chronic pain unit comes to mind)

    Would be good to meet you one day at one of those group rides and remind me to buy you a drink...

  2. roogazza's Avatar
    Thanks OAB, I can relate.
    I fight all the way and have considered a different approach.
    So true if you think of others as worse off.
    You remind me of a bloke I met in 1970 in Sydney. He would tie his left hand to the bars !!!!!
    (he was/is related to Geoff Perry).
    Wish you well. Gaz.
  3. Brownbikerbabe's Avatar
    Pillar of strength!

    I would put a standing ovation here if I could...

    I think its a great idea to go and talk to people in hospitals or at pain would make a huge world of difference to these people I am sure of it, and I think it will help you also. The worst thing in the world when you are suffering is thinking you are the only one that is suffering like this until someone comes and tells you hey you are not alone, I have been where you are now kind of thing.

    Ummm...I know there is some technology that ties off or deadens the signals of your nerve cells ...would you be interested in something like that?
  4. kiwifruit's Avatar
    Respect .
  5. onearmedbandit's Avatar
    Churs people. You know the best thing that has come out of all this? An enjoyment and appreciation of living. I know I was very close to be killed that day, and every day that I'm alive is another fresh start, another opportunity. Life is what you make of it right, so I reckon everyone needs an experience like this, just to realise everything apart from being able to draw breath is small stuff, and the small stuff ain't worth sweating.

    Right now I'm listening to some of my favourite music, something I do as much as possible, and without even thinking about it there is an inner appreciation that I could have never had the opportunity to have listened to this again.

    Like I say, I am truly one of the lucky ones.
  6. onearmedbandit's Avatar
    Good days and bad days. Seems like recently the bad days are out numbering the good one. Just another challenge I need to rise to. It's not easy though.
  7. onearmedbandit's Avatar
    I don't think I realise just how emotionally draining this is. I'm lucky enough however to have the presence of mind to not let this drag me down, but fuck me it's hard work trying to maintain a 'chipper' outlook. I think it's time for a ride.
  8. vifferman's Avatar
    While I can't really appreciate just how bad your pain is (although you've done a remarkable job of describing it), I do understand and feel for you. Since my open-heart surgery (pretty much a doddle, despite some complications), I've had a lot of pain from whatever the fook they did with my left arm while I was unconscious. In the last two weeks, it's got a LOT worse, even though mobility is improving and I can (mostly) use it to do most things. The latest instalment is almost constant pain in the top of my shoulder, usually with a feeling like someone stabbing an icicle (or icy-cold stilleto) down through the top of it. This one - despite being bad, is actually strangely bearable, and almost pleasurable (I'm sure you know what I mean).
    Anyway, this doesn't help you - just wanted to say I understand to a small degree what you're going through, I admire your courage, and your terriffic attitude. You Sir, are an inspiration and a hero.
    Kind regards,

    - Ian
  9. onearmedbandit's Avatar
    Hi Ian,

    Hope things have got better for you recently. Yeah I can understand what you mean about the pleasure side of it lol. Thanks for the comment about being an inspiration, and hero. I know that people think that of me, I've been told countless times. But I don't see myself that way, I'm just a guy who does his best to cope, to enjoy what life has.

    On a different note, I've been thinking more recently about how the pain has most affected me, and I came to the simple realisation that the greatest change has been my loss of solitude. I'm never alone, always have my companion. To go down to the beach and sit there for hours, or just as long as I wanted, uninterrupted would be a dream come true. I find I can't stay still for too long, I always have to be on the move, even when I sit in one place for a while, I always find myself fidgeting or shuffling etc. If I was to go down to the beach, it would be less than 5 minutes before I'd have to move or do something to distract myself. No more inner peace.

    No regrets, I know I can't change it currently. But it's good to reflect. I can type this with a smile on my face, as I know I'm getting to understand myself more and more. Life is an amazing journey.
  10. Fast Eddie's Avatar
    good read, respect man.

    makes me feel pretty soft haha.
  11. Gone Burger's Avatar
    I know this is an old blog, but I remember reading it when you wrote it. I read it quietly with incredle respect for you, and whenever someone mentions pain, I think back to this blog and all you have gone through and learnt to live with. To get straight to the point you inspire me. Since I first started riding myself 3 years ago I saw you out there racing and was blown away by all that you could achieve. Reading this just backs up what a wonderful human being you are - strong.

    The reason I have searched for this post again so far on is this. When you wrote it I was a girl who had never experienced pain. I respected but never could relate to it having never been in a situation where pain was more than a sprained ancle. Now, I too live with chronic pain. After my crash 15 months ago it has gradually become worse by the day, as now on a daily basis brings me to tears when it spikes to those levels of 10+ as you know so well. I didn't understand for the past wee while why I have been such an ugly person to be around. With major mood swings, trying to push it all aside telling friends and family Im 100 again - I look it so I must feel it. Now as the days go on I too have come to accept that this is something I will live with. There is no cure for my pain either. It is on a very smale scare compared to yours, but Im a girl and an incredible woose to say the least. After breaking my neck and back, I now throw up from pain from migraines every couple of days. I ride my much loved bike and push through it all to not allow any distractions or mistakes. But I get off my bike and I am in major pain for a week following. Sitting in an office chair at work holding my head up, and each movement makes my head want to split in half. So slowly I learn how to handle it, I learn and accept that pain has changed my personality and I've been very difficult to be around. But I strive to fully accept it and adapt to handling it better so that it becomes part of my personality that is not damaging to others or myself.

    Once again, I have huge respect for you. you have never met me, but I watch from a distance and now understand on a small level some of what you have faced. Your blog has always been in my mind, now more so with each new day. I must learn how to be strong again. I have a long way to go.