Now

I haven’t posted anything on here for a while, as clearly demonstrated by the time stamp on the last post…… I have been ruminating on that tonight, and now here I am. Life got very busy for a few months, after I decided I was going to start The Great North Walk, from Sydney to Newcastle, approx 260 kms. I had been doing quite a bit of walking, and on these random travels, I kept crossing and joining/leaving this Great North Walk. Skip to the end, I decided I was going to do it, and I was going to do it to raise awareness of Cauda Equina Syndrome – not to the whole world, but to the people who need to know about it, the people in the ‘danger zone’. Many questions ensued from outside influences; are you doing it all at once?; today?; how long is it going to take?: when will you finish it?; rah rah rah….. (oh and my favourite – why would you even bother doing that? (massive paraphrasing there!). And from this wandering and pondering came the idea of long walk as metaphor for the epic journey of life post CES surgery…….. no, you can’t do it all at once; no not TODAY!; I don’t know how long it will take me (to heal); I don’t know when I will finish; ……… or, from this view point, if I ever will. But of course I will!!! Eyes forward and all that. So I walked 100 Kms, and 32 mtrs!! That was from Sydney Cove to Brooklyn, over a series of 10 walks, made the facebook page that no-one looks at…. blah blah blah………. then kinda got stuck. Still there really, but waiting patiently to continue. Many things conspired to stop me in my tracks, confusing water crossings, where to start next, need of a support team and better pack / equipment, snakes, danger of death, remote (ish) areas, unexpected nerve / genital pain when walking (literally, per step!), inclement weather, BUSHFIRES now!!! And of course, reality. Having to make money and all that.

And making headway in healing. Staying consistent with weekly stool softner and daily Metamucil (fibre) is helping with digestive process. Also, picked up a Smokey Quartz crystal this week later to discover it is good with helping ‘elimination’, to surprising results!! And I think this is part of why I haven’t posted for so long, on any of my pages, because life’s pretty bloody good, despite the apparent blockages, health is fairly on the level…. energy is flowing, just into different places for now.

I will get back to The Great North Walk, I don’t know when, but I know it is a great project for me, and a great platform for healing.

Meantime if you are interested check out my Facebook page (also not up to date because technology has been a bit……. uncooperative) (I’ll get onto it)…..

https://www.facebook.com/pg/The-Great-North-Walk-468539210545804/posts/?ref=page_internal

 

 

 

 

Oscillating.

Moving between two different states. The state of being in pain and being controlled by it, or at the least, sabotaged by it! And the state of being in pain, and rising above it. Yes, there are moments of no pain, and no awareness of pain or of no pain. But there is a lot of oscillating between them all! I would love to settle on just one, yet that seems just not possible, at the moment. There is always that little bit of hope though, which, to be honest, if I shine a giant light on, well then it shines even brighter. Yet I keep finding myself getting sucked in to the darkness of negativity. Little traps, that in hindsight I think ‘Dam It! Again!?’………

And yet here we are, still going. Still oscillating. I guess there are worse states to be in, like stagnant, or stuck. Or at the end of watch. But oscillating makes me think now of the energy between atoms, or the energy of atoms. In flux, changing. Oscillating. I guess that is not such a bad thing!

It always to seems to be when I am at the top of the cycle, that I am able to see around, see all that is going on. But is it a perspective, or an environment? It is both at different times, but I feel if I could bring the perspective – for example as I see it now, as a position of belief, and hope – into the environment ( such as work, where I have a job to do, but that job hurts, and my focus shifts to hurt, and pain, and suffering, and being a victim, ergo forcing me to make poorer choices in the care of others, and less capable of being the positive influence in somebody elses reality ( and therefore my own ) ), then maybe the whole experience would be less painful. I need to do more research on Pain psychology. Or perhaps I should call it Health Psychology. More NLP. More mindfulness. More meditation. But damn it, life is so busy!!!

Things that have helped me recently;

• Doing more Qi Kung
• Using my vibrating roller to stimulate circulation, especially to my legs as I do a LOT of driving at the moment, and increased blood flow is most excellent!!!
• Moving in more planes of movement in my Pilates, and continuing to explore my own physical body, learning the lessons of cause and effect.
• Being more connected to the people around me.
•  Taking time to relax and smell the roses, and observe them, and sometimes take pictures of them.
• Crystals! Always Crystals!!!
• Being honest with my inner self.
• Occasional Anti Inflams when really needed.

Sometimes it just feels too easy to give up. I mean, it would be really, so much easier! But then life would just be shit, and what is the point of that? Might as well be a wasp.

And yet here we are, still going, oscillating. Like the energy of atoms. Like star-dust.

10 Years On

To say the last year has been rough is understating, but I’m still here, and actually kicking the ass out of life for the first time in a LONG time. OK, so maybe it doesn’t seem like I am kicking it anywhere, but I sure as hell am giving it a good kicking. I’ve been dealt this lot, I’ve become a very keen participant in it, doing the best I can with what I have. Which is all that any of us can do, at any point in time. I am yielding the sword, I am being the light in the darkness, I am the calm in the storm. I am the change that I want to see in the world around me.

I know it sounds a bit crazy but hey, it’s just so good to be feeling positive – and that is the key to navigating this journey. Feed the light or feed the darkness.

The struggle is real. Life is a struggle. We all have our own struggles. It is how we face them that defines us. Sometimes we win, sometimes we aren’t winning.  Circle of life. Always spinning and moving – it’s all really a matter of perspective, up or down, how attached am I / are we / are you attached to that part of the cycle? Are you in it or you are you looking at it? I had the best conversation today with another teacher about teaching and learning, experiencing. Perception. It made me re-evaluate how I perceive my world, even now. Growing, changing, moving. Moving forward. Always forward.

Anyway I could rant on and make no point at this rate.  I was inspired this week with the latest response to my blog from Matea. I feel so happy inside when I have enabled someone else to feel better about their situation, and what brings them to this blog ( I dont even know how people find it )…… To think that this happened to me for a reason bigger than me, that I can change one persons life, for the better, even if only for a moment, God it almost makes it worth it. In fact it does. I don’t think it is the right word because I didn’t do anything wrong but I feel vindicated. I feel a meaning. I feel a purpose in all of this.

A quote comes to mind; ‘When one holds a dream, independant of the environment, that is greatness’.

I like that.

 

 

 

Note to self.

I think the most valuable thing I learnt recently is the drugs just aren’t good for me! And when I say drugs, I mean pharmaceuticals. In the first instance, Gabapentin circa 2012, and in the second instance, Lyrica/Pregablin. I can still say that the Amitriptyline is the only one of the three that has had significant benefit with minimal side effect (much improved bladder function – and I will revisit this med, but not till 2018). I mentioned the darkness of the Lyrica cloud I just spent a few months in, and I am not going to dwell on that. Suffice to say I would prefer to deal with the devil I know.

And even that has not been too bad. I mean, it is still a daily ‘struggle’ in a first world kind of way, but I think I am still on the road to recovery, even if there have been a few detours of late. Sometimes it feels like I am there, but then it is just a little further. This is definitely the patient persons game. The long game. But so worth it. Every day I get a deeper and deeper understanding of my body. It still throws surprises at me ( I note that I speak of my body in the 3rd person, as though it is not a part of me or a different thing to what ‘Me’ is ) …………… However it is great to have the knowledge, to understand and rationalise. The things that have been helping me the most, on a DAILY basis are;

• cycling
• abdominal massage with Hemp Oil ( also using the thumbs to get into the QL’s in the back )
• Sacral floating using a Sacral Wedgy
• Wearing a pelvic support belt
• more abdominal massage with a spikey foot roller / magic ball / hands / spikey ball
• diaphragm massage
• foam roller Hamstring Fascia mobilising / hydrating
• constructive rest position 20 minutes or more
• reformer session 30 minutes
• magnesium supplements
• heated wheat bag over groin / perineum

On a less frequent basis;

• diclofenac – this is actually my savour, such a shame you just cant take it all the time like the ‘Neuropathic’ Pain Meds!!
• Osteo
• MFR ( myofascial release )
• Remedial Massage

I recently had a brush with Sciatica down the right leg, over a period of about 8 weeks, which was most helped by a brief dry needling by my Osteo, there is more on this on my Facebook page. Finally it feels like I am coming out the other side of that experience. I have not got full muscle function or range of motion back in the R hamstrings yet, but the nerve pains are gone. There are a few odd compressive sensations happening through the sacrum and lower back, but only quick random jabs, those lightening bolts – although none today which is a good sign. Between all that and random acts of SIJ dysfunction ( although not for a good 8 weeks now ), on top of all the usual CES complications, it has been a pretty tough year, and yet I am feeling closer to top of my game for the annual average, so I am much looking forward to amping it up – body willing. God willing. Universe willing

This is it, the long game.

140917

So I’ve not posted in a while because I have been in quite a dark place. I mean I say ‘quite a dark’ place but if some of my friends and family knew what I was really thinking they would be like what the fuck??????? But hey we all have our shit to deal with, and it comes in peaks and troughs. There has been a lot of pain/discomfort/fear/catastrophic thinking, but today I had a bit of a breakthrough. I actually took the time to spend half an hour digging into my abs with a spikey ball and some other fairly agressive stretches and after a few months in a dark cloud suddenly there is a light! I do feel different….. I feel better
Now was it because of what I did or was it because of the intention of what I did? Who cares, tomato, tomatoe – its all ketchup!
I also came up with a simple creed today;
Help people
Help yourself.

Ooops

OK, so looking at the date of my last post, I realise how ridiculously slack I may appear. Please by all means leave comments here, but if you want a more up to date medium go to my Facebook page

https://www.facebook.com/Australian-Cauda-Equina-Syndrome-Community-1642499372650777/

 

🙂

Moving on…..

Reading my last post just now, and a few things tie together – as life does when you sit back and watch it. I did Kayak again, and this time I mobilised and stretched my neck, shoulders and upper body, and with a heightened awareness paddled another hour up and down the river, with minor feedback from the Right neck / shouder quadrant. That night involved immediate hot wheat bag around the neck and shoulders. And the next day, and the day thereafter, zero negative feedback. Nothing. The body really does adapt quickly! (This is a significant stage in learning and heeling – so often when we have a response from a situation that is negative, we avoid repeating the action. Unfortunately, it is often the same action (s) that set us free and allow us to move forward. Instead, these become barriers of fear, blocking progress. Even easier when one is caught ( obliviously ) in a cycle of pain.)

Which brought me back to a comment a client made this week in class, after a few years away from Pilates, after his return class he had a lot of neck pain. He put this down to ‘poor technique’. I pondered this comment for two days, and vocalised it to my cousin tonight, ‘just because you have a negative outcome, does not mean you had poor technique. It’s more likely that you are using your body in a different way, and it is simply responding’. I used good technique in my Kayak – I was aware of the movements of my arms and shoulders, lengthening down toward the water with my elbow to help maximise the Lats, lower and Mid Trapezius, the Rhomoids, and the mighty Rotator Cuff, all with Cerattus Anterior helping from the front – an artilleray of muscle to placate the Levators and Upper Traps. And yet I was injured. Strained. Whatever word.

Take what you know, apply it, move on. If you don’t know how – get learning.

Inclement weather has kiboshed the Kayaking, and at the moment it is all about the Pilates, cycling and walking. The Hills District is rightly named, and I have some killer routes that are really helping to increase my stamina, hip flexibility and strength on the bike. Even better with additional Park Gym – as I call it. Push-ups, Pull-ups, Dips, diagonal stretch bar that I LOVE and will have one of in my studio……..

And as for the walking! Well, I got mysef a Fitbit and literally within 11 days I am loving all the feedback. I can’t believe I walk an average of 8km + per day – I have walked 86 Km in 11 days. And on those days, when I saw I was lagging behind, I would go out and walk till I hit 10,000 steps – where I would otherwise have sat and watched television. And I have discovered a new wonderful awareness of posture while walking, as the Pilates calendar kicks back into full swing for 2016. If you are looking for a simple way to get yourself moving, get a Fitbit. Discussion with clients is showing that Office Workers / Desk Bound Idividuals – and I am sure this applies to taxi drivers, truckies, couch surfers, screen printers anon – are striding between 2,000 and 3,000 steps per day – and if you want to know what 8 hrs a day of sitting is doing to you, watch the BBC documentary ‘The Truth About Exercise’, to say nothing of spinal loading and compression…….

On a final note, today I can feel my Abs. Doesn’t happen often when you work in Pilates for 11 years, conditioning and building up a level of core stength that takes something fairly ridiculous to shake. My Abs are sore, yet that does not mean I have used poor technique. I have used a new technique, and my body is adapting. It will get stronger for it. It is interesting to note that if it was my back that felt like my Abs do right now, I would be in fear. Not for long, but still, interesting to note. Negative outcomes are usually nothing more than doing something new, and body geography.

Rollin down the river…

Today was my second session of Kayaking….. Twice a week I cross the Lane Cove River on my way to work in Chatswood, and on a few of those mornings I have seen a lone man Kayaking down the river, which triggered my response to do just that – although up river rather than down. The good news is that all things spinal survived this my latest challenge. However, two days later my R upper traps were in lockdown!! It was difficult to turn my head or look up / down – and I was welcomed to the world of most of my Sydney siding clients…. ergo roller and spikey ball release work….. effective, minus one nap on the couch……

And so to today. Initially I noticed that my R rotator cuff and Rear deltoids displayed weakness / discomfort, however after a few Km this eased off. I am fully aware of the rotational torque of the body to each side ( much stronger with a R stoke to the L stroke ) as well as the lower trapezius and Latissimus Dorsi accent and yet the R upper trapezius / levator scapulae still end up presenting with strain. And so post Kayak session a good 45 minutes of shoulder release work ensue……. bringing me closer to the constant and daily that a majority of my clients face.

All I can say is, I am so glad that it is my R shoulder that screams the loudest, and that my back remains otherwise, silenced.

7 and a bit years…..

Over 7 years on from CES and what do I have to say?? I wish I had have gone to hospital a day earlier – hell two days earlier – I would have saved myself a lot of pain, a lot of humiliation… just, a lot. I wish I wasn’t so afraid of what might happen that I hadn’t actually caused it to happen. I wish that someone who knew better had forced my hand where they did not. I wish I new then what I know now, and things would have had a better outcome. But that doesn’t matter. None of that matters. That is not the voice of healing. That is the voice of blame. That is the speak of the victim. That does not set me free, it imprisons me, and living with one warden to my pain is enough, I need not employ others.

7 years on and one might say I am no longer a ‘sufferer’ of CES, rather a ‘sufferer’ of CPPS – chronic pelvic pain syndrome. A little know yet growing curse of the modern man…. and I say man – Female Pelvic Pain is more wide spread and accepted – on a recent Men’s Pelvic Health Lecture I quote one speaker as saying that male pelvic health lurks about ’20 years behind female pelvic health’ – not surprising given the amount of people (male and female) who think that men do not have pelvic floors……… It’s all really just passing from one category to the next, one label to the next, one syndrome to the next. Whatever it’s called / labelled, it doesn’t matter. What do we do with it? What do I do with it? Well sorry if this is a disappointment, but I still don’t know – or at least, I know what I do with it, but I still don’t know what my outcome will be, until the day I wake up and realise, all the pain, the discomfort, the tension, is gone. This does not mean that I give up. But there is medicine and there is learning and there is academia and theory and practical application, and then there is what you are left with, how you feel. And that feel underwrites everything you do – it underwrites everything I do. And in a realm governed and determined by professionals, who mostly have no idea how we feel, we are left to our own devices. And trust me, I have been trying out some weird devices lately……. 🙂

So what does it all mean? Gosh, maybe it is bigger than me, bigger than my experiences, bigger than this blog and the internet. Bigger than some things that can kill you, but that can be cured. But then again, it is only a pelvis, smaller than a hand basin, less bones than one hand, less parts than the laptop I am writing this from, and yet the center of our being – the human center of gravity. And little more than a center of pain.

Coming down the Mountain……

Having survived Alpine Pilates and passed the 10 week all clear phase post surgery, I found myself at 3665 mtrs altitude alongside Mt Blanc on the Italian side at the end of the Aosta Valley. Although we couldn’t actually see Mt Blanc, and not just because he was wearing his cap and scarf, but because we were ensconced in clouds ourselves. The ride up in the new Skyway gondola was exhilarating! On our return we decided upon reaching the 2 third station ( at 1655 mtrs ) to walk down to the bottom. We asked a young man working in the Alpine Garden how long it takes to walk down – he replied ‘an hour to an hour and a half’. I asked my friend Sarah to ask him if the path is clear and easy to follow – he said ‘they are doing work on it but it is clear’. Well, enter the Italian factor!! Aside from it taking an hour and three quarters to the bottom, he failed to mention the ‘walk’ was the equivalent to a black run in Ski terms, and at times disappears or becomes a 6 inch wide path with 1km death drops to either side with a flimsy piece of rope to hold onto for good measure. At two points the path just vanished, and I had already vocalised how I hoped this was indeed the path, because the jelly like shaking of my quads were pretty much saying that if we had to head back up and find another route, I would probably just sit on a nearby fallen trunk and await a chopper! However, we eventually made it down – no chopper required. The next day, I noticed new and strange going’s on in the Left Inguinal Ligament area. A dull throbbing ache that would come and go in seconds, and as the days went on, this started to progress further south in scary areas a lightning bolt shot of pain. Having had basically an excellent recovery post surgery, it seemed as though something may have come acropper…..

Since then, the lightning bolt has lessened to a point of redundancy, but the Inguinal Ligament pain shows up on occasion. Sometimes during exercise there is pain, but not always conducive to the  dictate of logic – exercises that are more difficult with a greater load baring to the abdominals are often less ‘painful’ than exercises of lesser demand. Sitting here now I can feel ligamentus pain, which I did not when starting this post, and often when in the car the pain comes, although not always. Although at the time I thought I had undone the good work of the surgeon and the healing capabilities of my body, nothing major has since occurred, just a low lying rumble that comes and goes.

Having made it back to Sydney, it occurred to me that I had not performed any abdominal massage on myself since the surgery. I got my trusty spiky ball and worked my way around the abdomen – working into tense areas whilst being mindful of the fact that somewhere in there is a new piece of gauze…….. The inguinal ligament is still greatly swollen with a suspicious lump in / on it – again I remind myself that the surgeon quotes this as ‘surgical swelling’ and I continue to monitor it. I have a vague awareness of the parts that are me, and the parts that are not, although this is perhaps mostly due to my awareness post surgery. There was a definite improvement in the ligament pain since abdominal massage / palpation, and I continue to do so as required. Oh also, I have been doing fascial stretching of the area as well, I believe this also helps.

Perhaps I came down one mountain too far, perhaps I would have had the same result without the mountain – I will never know / we can never know – sometimes there is discernible cause and effect, sometimes there is just effect. As always, we can only do the best we can do with what we have at the time. And wherever possible, get a little more!!!