Saturday, February 25, 2012

Somewhere to store them

I have numerous notebooks and an even greater number of scraps of paper with thoughts and ideas scribbled on them. Each collection of words hastily written in case I forgot them; desperately recorded to remind me later of that moment of insight.

Some of them are barely a few words; some are a few paragraphs; some are quotes that created an explosion in my head when I read them; some were written 20 years ago; some were written more recently; some are more or less complete; most are starting points waiting to be fleshed out and developed.

Unfortunately, they induce a sense of guilty responsibility. I can't throw them out - each one was written with the hope and expectation it would prove useful - and yet, they pile up, cluttering desktops, shelves and any number of random spaces.

But with all that's been going on in my life recently, I feel a need to offload them.

My solution is to place them online - probably one a day on average - so I can search through them with ease if I want to, without having to trawl through semi-legible scribbles in an assortment of piles.

Whether I ever will is less important than the feeling that I could, should the fancy take me.

So a week ago, I put together a new blog called "Somewhere to store them"

Feel free to have a nose around, and if anything here triggers ideas for you, then good for you. Probably. Unless you have the same problem as me...

Thursday, February 16, 2012

What is different about Mickel Therapy? Part 3

In Part 1 I talked about the misconception of the separation between mind and body. In Part 2 I wrote about how that misconception leads us to respond in ways that will reinforce rather than help the condition, and that what we need to do is start listening to what our body is telling us and change our responses. In this post, I thought I would outline the impact taking this approach has had on my illness.

One of the key things to understand about Mickel Therapy (MT), is it is a system. Results come from understanding how the system works, applying, and committing to it.

In this respect, it’s remarkably similar to losing weight (for those who don’t know, 7 years ago I used to be around 90lbs heavier). Short-term, quick fixes rarely work in the long term, and might even be counter productive. It’s known, for example, that 95-98% of all diets fail – that is, within 2 to 3 years the dieter has put back on all the weight they lost, and in many cases more. In order to sustain the weight loss, you have to shift from thinking about diets and move to thinking about a lifelong commitment to healthy eating. If you choose to eat healthily, and stick with it, then weight loss becomes an inevitable side effect.

But behind eating healthily, you have to first understand why you have been overeating in the first place – addressing not just habits, but your emotional relationship with food becomes crucial if you ever going to be able to make sustainable changes.

Nor is it a matter of blind faith or belief. Of course, if you don’t believe eating healthily will help, then you’ll never be able to commit to it, and keep doing it through times when you would kill for [insert craving of choice].

So MT is a system where you learn how to become aware of what your body and emotions are up to; you learn how to accept what you are feeling and place it in an appropriate context; and you learn how to change your actions so you are no longer fighting, but working with your body and primal emotional states.

On one level, you could say you are learning to become authentic. And this can have a profound effect on your entire system.

In this way, you could just as easily commit to Buddhist principles to achieve the same end. The 4 Noble Truths give you a starting point, and the 8-fold path is a system, which will bring about balance and authenticity. Again, no belief in anything mystical is actually required. And if the commitment is there to the system, over time, the brain actually rewires itself (click here for a 4-minute interview with the Buddhist Matthieu Ricard on a BBC News radio programme, after his brain was scanned by MRI machines).

So as I see it, at the core of how something like MT can work are 2 fundamental ideas. The first is the mistaken notion that the mind is a separate entity to the body - and the traditional sense of the conscious mind as being the “real” self and the primary authority – is dangerously naïve (as described in the previous posts). The second is the understanding of the plasticity of the brain – how we respond and how we act lay down and reinforce connections and pathways – and if we change our understandings and actions, then we can rewire aspects of the brain.

It is not passive, and it is not necessarily easy. Many of our thought patterns and responses are so embedded we are not even aware of them. But part of the system of MT helps to identify them. As time moves on, and we establish new ways of interacting with our bodies, minds, and the world around us, many of the symptoms begin to reduce in their severity and may disappear altogether.

Over the past 6 months I have learned all sorts of things about myself – how I think, how I react, and the unseen, unchallenged pathways I follow by default. Despite the fact I thought I was pretty self aware already, the reality is we all have multiple blind spots.

And our biggest blind spots are usually hidden in plainest sight. In fact, it’s not uncommon for our biggest areas of self-sabotage to be hidden smack bang in the middle of what we perceive to be our greatest strengths.

Nearly 6 years ago, when the term CFS started to be mentioned by the doctor I was seeing, my good blogging friend Carole said, in her opinion my problem was TMB – too much brain. I was constantly thinking of anything and everything, pulling it apart and reassembling it in a multitude of ways. She expressed surprise that I couldn’t see I was probably exhausting myself with that amount of cranial activity.

Of course I laughed and dismissed it. My problem solving abilities were one of my most powerful strengths. Now, though, I’ve come to realise that on some levels, she was right (Carole, you can say you told me so, but only once – OK?).

Regardless of what triggered my condition, my investment in the authority of my fast and agile thoughts was now playing against me. In a brain primed for fight-or-flight responses, grabbing hold of any thoughts that flittered across my consciousness and trying to solve them, was now a dangerous thing to do.

And as I became increasingly tired, so I tried even harder to “solve” this mystery illness – analysing aspects of my life, looking for traumatic episodes, searching for patterns. Far from helping me, this activity helped to embed the pathways that were assisting in my decline.

As the Mickel Therapy got underway, this realisation was one of those epiphany moments for me – it’s when I wrote the post Who’s in Charge.

I understood that one the primary strategies I had to develop was to learn let go of trying to solve everything that came into my head; to stop constantly ruminating and continually gnawing away at thoughts.

And the best tools for this are Mindfulness and Meditation.

In essence, the basic approach is to be in the moment, rather than mulling over the past or the future – each time you find your mind digging its claws into some thought, you gently release it and return your attention to whatever you are doing.

For a couple of years I’d been forcing myself to go for a walk every morning, but 10 minutes was my absolute limit. If I went to 11, it was like the plug was pulled out and exhaustion would overwhelm me.

Back then, I barely noticed what my body was up to - during my walk I would be absorbed in whatever was most prominent in my mind. Now I practice being Mindful. I pull myself back to the present, to the now, whenever I realise my mind has wandered off again. I feel the wind on my face and the pavement beneath my feet; I listen to the sounds of the birds, trees, passing cars. I try and experience being completely in the walk, ideally without much thought at all.

Every afternoon, instead of going to bed, I now meditate for half an hour, focusing on my breathing. Each time my mind wanders off, I gently bring it back to my breathing.

Every day I practice 10 to 15 minutes of Tai Chi, trying as best I can to be completely in the movement, feeling the body, the air and the flow – gently bringing my mind back to the movement each time I realise it has wandered off.

Along with starting to learn how to listen to my body and emotions, these things have had a profound effect.

I now happily go for a 20 minute walk every day, sometimes longer, sometimes heading out to the shops as well – and I’m not exhausted. If I do a lot of walking in one day, I might get a bit tired, but then part of that is I’m not particularly fit, having not been able to exercise for over 5 years.

I no longer have to worry about what will happen if I’m not home by 2pm to be able to sleep during the afternoon.

I no longer live in fear of the Fatigue.

Can I say with certainty that MT will work for everyone? No. As I said at the outset of these posts, I am not a medical doctor/researcher, nor I am not a trained Mickel Therapist - this is just my interpretation of MT. However, despite some of the fears I have read on various sites, I am convinced it cannot harm – how can becoming more in tune with yourself make things worse?

Am I completely cured? No. Quite apart from the fact I feel “cure” is a misleading word - it implies returning to a previous state of being, whereas I feel I’m creating a new way of being - the reality is there are still some symptoms that make themselves felt. As I said before, this is not a quick fix, and it is less than 6 months since I began the MT. But I am considerably improved on where I was – far more than I could possibly have hoped for at the outset – and can see how I will continue to improve as I continue to apply what I have learned.

What alternative would I recommend if for you MT is not possible (or desirable) for whatever reason? Zen Buddhism. And I’m quite serious about that.

Tuesday, February 14, 2012

Meg turns 14

Our little Valentine’s baby turned 14 today, slightly wary at leaving the comfort of 13 behind, but a bit excited too. And wondering when we’re going to let her have her own Facebook account…

In the 2nd half of the morning, as Maggie was busy creating a heart-shaped, gluten-free chocolate birthday cake, Meg, Rogan and I went for a walk down at Rascarrel Bay.

After drinking the hot chocolate Maggie had made up in a flask for us, I thought I’d take a photo of the 2 of them.

The fact that it was easy – no fuss, no complaints, no pulling faces at each other (or me) – was not because they are used to me carrying a camera. Quite simply it’s because they get on well together. Meg adores her big brother and Rogan is incredibly patient with his little sister – far more than I ever was with mine.

When I think how much I used to fight with my brother and sister when we were kids, it astounds me how little trouble we have with the two of them.

Some days, and this is one of them, I can’t help but feel a very proud Dad.

Saturday, February 11, 2012

What is different about Mickel Therapy? Part 2

In the last post, What is different about Mickel Therapy? Part 1, I talked of the misconception of the separation between mind and body.

If we think instead of the conscious mind as being just one aspect of a wider whole that goes into making up who we are – which includes physical needs, instincts, primal emotions and subconscious desires – then it helps us to avoid many of the problems thrown up by the simplistic mind/body separation model.

Whatever the initial trigger for the ME/CFS might have been, according to MT (Mickel Therapy) and other mid-brain based theories, those with this and related conditions are now dealing with the result of a part of the brain no longer properly regulating certain hormone and chemical signals to the rest of the body.

The question plaguing the ME/CFS and medical communities has been what to do about it. The 2 leading recommended treatments are GET (Graded Exercise Therapy) and CBT (Cognitive Behavioural Therapy).

GET works on the idea that you establish an energy baseline – understand what you can do physically in any one day – then slowly but steadily increase your activity levels and train yourself to get fitter. Some claim this has helped, but for many it doesn’t, and for some it can actually make them worse, as the body is already exhausted so making it work even harder just increases the fatigue and damage.

CBT looks at the impact negative thoughts can have on your mood. In brief, you learn strategies to catch your negative thinking patterns and change them. The idea is over time you should you learn to develop a more positive outlook and feel better about yourself and the world. The medical profession admit this is not a cure for ME/CFS, but do recommend it as a useful coping mechanism for dealing with a long term, chronic condition.

Mickel Therapy, on the other hand, comes at the problem pretty much from the opposite end to CBT: rather than try and use the conscious mind to change the emotions, MT is about learning to listen to the body and emotions and then change your actions.

With regard to ME/CFS and related conditions, the MT view of symptoms – muscle & joint pains, anxiety, depression, brain fog, IBS, fatigue etc – is that the body is trying to communicate with the conscious mind, but is not being listened to.

The older, more primal areas of the mind and body do not communicate in language – that is the preserve of the conscious mind only. So when we hear a loud bang, we jump and our heart starts racing; when a loved one leaves, we feel a sense of loss; when we sit on a pin, we feel a stab of pain. These are all instructions from the body and other parts of the brain to take some kind of survival action – in these cases, run away from danger, connect with others so we are not alone (and thus vulnerable to predators), or pull the pin out of our arse to avoid blood loss and/or infection.

But what would happen if we ignored these signals? What if, instead of standing up and removing the pin, we decided to distract ourselves from the pain by watching a DVD, or try and dull it down with painkillers? The body can’t literally say, “Excuse me mate, but this situation really isn’t very good for us, you know, so will you please remove that bloody pin!” All it can do is make the pain worse and through feelings of discomfort try and let us know we should do something about it.

Symptoms, then, are signposts to something being wrong. If we respond to them appropriately, they will ease off, because they are no longer necessary.

But in our culture, we are taught to override and suppress uncomfortable symptoms or “bad” emotions – ignore them, pretend they don’t exist, cover them up with food/alcohol/sex/shopping/gambling/anti-depressants/insert medication of choice. And part of this comes down to the delusion that the conscious mind is the authority in charge that should be giving the instructions to the body and primal emotions.

So instead of listening, and working with the brain and body to constructively deal with the symptoms, our conscious minds set about overriding them.

Our culture is also selling us distractions in the name of solutions – the consumer society makes us feel inadequate so we will buy more, bigger and newer, in order to make ourselves feel better. And we are surrounded by newspapers, TV and Facebook alerts, triggering feelings of fear, outrage, panic and righteous indignation, dozens of times every day. Generating these responses in us sells papers, keep us tuned in and makes sure we “share” with all our online friends.

This, then, is a problem for most people, but if your brain has now got the fight-or-flight gateway firmly wedged open, then it’s disastrous. Not only is the system already primed, it is being bombarded with further triggers, which are then being assisted by the conscious mind - thinking it is in charge and leading the fight in completely the wrong direction. Rather than tackling the symptoms, we are now reinforcing them.

So in contrast with drug or psychotherapies, the approach of MT is to start monitoring the symptoms – and instead of trying to cover them up or instruct them to be otherwise, we need to be looking for the clues they are trying to offer.

What were we doing when they appeared or got worse? How did we respond to them? And how might we change our response in a way that satisfied our body rather than overruled it?

And it doesn’t just have to be the obvious big stuff that impacts on us. Many of the triggers can be small and seemingly insignificant, so we brush them aside rather than deal with them.

At this point, an example would probably be a good idea. So let’s pick a trivial one like being the only one in the house who doesn’t squeeze the toothpaste tube in the middle.

Every time everyone else cleans their teeth, they squeeze from the middle or the top of the tube, so every time I go to clean my teeth, I have to push the toothpaste up from the bottom as there’s not enough left at the top for me to get any toothpaste out. Is it a big deal in the larger scale of life, with wars, famines, global financial meltdowns? Well, of course not. It’s what you might call a 1/10 issue. But, my response could be a 5/10 or on a really bad day, 8/10 – I HAVE TOLD EVERYONE ABOUT THIS A MILLION BLOODY TIMES! I AM FED UP WITH NOT BEING TAKEN SERIOUSLY!!! – it is not the problem itself, but the injustice or unfairness it represents.

But to make such a huge fuss about a toothpaste tube would seem so stupid, so I won’t react, I won’t do anything, because I don’t want to appear petty and trivial.

So every time I go to clean my teeth, I get the emotional kick in the gut, but do nothing about it. And the pathways in the brain get reinforced.

There’s a definition of madness, which is continually doing the same thing, yet somehow expecting different results. Or as another old saying puts it, “If you keep doing what you’re doing, you’ll keep getting what you’re getting.”

With the example of the toothpaste tube, I keep expecting that either other people will finally see the wisdom in squeezing from the bottom, or I’ll stop being bothered about it. But as my behaviour never changes, neither does the situation, nor my reactions. Each time I clean my teeth, the pathways become more deeply embedded.

The solution, then, it to look for other ways to respond. Perhaps I’ll write instructions on where to squeeze the tube, on the mirror, in toothpaste – it might get everyone’s attention. Or maybe I just buy my own toothpaste tube and keep it on a shelf out of reach of everyone else. It might require a bit of trial and error, but if I keep looking for alternatives until I find one, then sooner or later I will come across a solution whereby I no longer get the feeling of injustice and unfairness.

Now I’m not saying that toothpastes tubes caused, or kept me in my Fatigue. I’m using it as an example of how there can be hundreds of minor things throughout the day where our immediate reaction is disproportionate to the event. And when you have a brain primed for fight-or-flight responses – where the gateway is jammed open and stress will exaggerate all your symptoms – then the accumulative effect, day in day out, will make either make the condition worse, or at the very least, impede recovery.

So the approach of Mickel Therapy is to start observing your symptoms and your reactions – your thoughts and emotions. The idea is to look for your underlying feelings – what is the core emotion you are feeling when the symptoms increase their intensity?

If you can identify the core emotions behind the symptoms and find a way to acknowledge and deal with them in a positive manner, then what begins to happen is the symptoms start to ease off. So by learning how to listen and respond to what’s going on at deeper levels, and stop your conscious mind leaping in and scuppering everything, you can effectively start to rewire your brain’s stress response mechanisms.

This approach, then, is not as simple as taking a pill or sitting and telling a sympathetic soul all your problems. It requires making a fundamental shift in your understanding of who you are and how you are interacting with yourself and the world. And then it requires learning, and applying, new skills, new ways of being.

As I said at the end of the TV programme, it's not a cure, as a cure implies returning to our previous self. This is about constructing a new version of who we are - one who understands the conscious mind is a useful part of the whole, but is certainly not the one in charge.

These posts have turned out to be much longer than I anticipated, so I’ll stop here, and Part 3 will be about how I have applied these principles to my own condition and found myself much improved.

Friday, February 10, 2012

What is different about Mickel Therapy? Part 1

I was recently on a TV programme – Trusadh – about ME/CFS [links to Part 1 and Part 2 on YouTube]. The relevance of my contribution lay in the fact I was doing a course of Mickel Therapy – a controversial treatment with many people claiming improvement and even cure, although it is not recognised by the NHS nor the ME Association.

However, while the programme was very good at highlighting both what it is like to live with ME/CFS, and the difficulty and diversity of opinion in identifying and tackling this debilitating condition, it didn’t give any real sense of what Mickel Therapy (MT) is. I’ve since seen plenty of comments left on different discussion sites where its clear many have been left with the impression it is just another version of CBT (Cognitive Behavioural Therapy) or psychotherapy, which it is not.

So I thought, having been through and benefited from MT I would give my interpretation of why it has had an impact on me, and what separates it from these other treatments.

At this point, I need to offer a disclaimer – I am not a medical doctor/researcher, and I am not a trained Mickel Therapist. These writings are entirely my own opinion and are not endorsed by anyone with a stake in what I say.

What I do have is a degree in philosophy – which could be said to be a 4 year training course on Bullshit Detection - and I have spent well over 5 years of my life crippled by fatigue and related symptoms, which no one in the medical profession was able to adequately explain or do anything about. Since going through a course of Mickel Therapy, my energy levels are much improved and I can see a path towards further recovery.

Much of the controversy of MT stems from it being a “talking therapy”, as opposed to a physical or drug based therapy, and the idea that words alone might be able to affect a physical condition can seem nonsensical. Indeed, it seems to imply the illness is “all in the mind” or, at worst, even a false illness belief.

So was I not really ill, responding to some kind of placebo effect, being conned or outright lying about my condition? Well, obviously I don’t subscribe to any of those theories, so what has been going on then?

In order for it to make any sense, we first have to break down some commonly held assumptions – the biggest being the mind is a separate entity from the body, and is in charge of what’s going on.

If you have this belief, then there are other assumptions that follow. You might think, for example, that you could compare the mind and body with software (the programming) and hardware (the physical components) of a computer. So if your computer stops working, you first have to figure out whether it is a hardware or software problem. Is it that the Windows Vista has corrupt files or a virus so can no longer boot up, or has the keyboard broken or the motherboard fried – in which case no amount of software changes are going to make any difference – the hardware needs to be physically fixed or replaced.

Bring this analogy back to humans, and if there is something wrong with the body, it needs to be physically fixed – you can’t talk a broken leg into healing itself.

But, how accurate is this model of human beings?

At this point, rather than doubling the length of this post, I would ask you to read a previous post of mine – Who’s In Charge, which outlines the mistaken idea that the conscious mind is somehow the primary authority that needs to be obeyed.

The point being, that once we start really thinking about it, the separation between mind and body is fuzzy at best. Most of what we think of as independent conscious thought has been driven by subconscious desires, habituated thought patterns and bodily functions. If you doubt this, see how long you avoid going to the toilet before it occupies your conscious thoughts so completely, you are utterly unable to think of anything else.

Our conscious thoughts are not the start of any action, they are the result of a whole mass of stuff going on in the body and brain before we become aware of them. Our thoughts can, of course, affect our emotions and vice versa, and even create feedback loops, which intensifies both, but they are rarely the starting point.

Can physical traumas affect the mind? Can mental states affect the body? Absolutely yes in both cases. To draw a hard line between the 2 is simplistic and naïve. However, if we think about them as different aspects of the same thing, different members of the same team, different faces of the same whole, then we open ourselves up to other approaches.

For example, each time we are in a stressful situation and our body goes into fight-or-flight mode, the brain activates a whole pile of chemicals and hormones to enable us to deal more effectively with the threat. Our heart rate increases, pumping more energy to our muscles, our senses heighten, and even our digestive system slows down as resources are diverted elsewhere. We have a very physical response. And once we perceive the danger to have passed, we start to calm down and the alarms are switched off.

Several theories are now pointing at the idea of mid-brain activity being at the heart of ME, CFS, Fibromyalgia and other fatigue and auto-immune conditions. The notion being put forward is that instead of switching off once the danger has passed, the flood of instructions keep coming. But the fight-or-flight response was designed to be temporary, not permanent, and consequently the person can end up with an array of symptoms, from fatigue to muscle pain to IBS as the body and immune system steadily wears itself out.

What causes the gate to be jammed open is unknown, but viruses and stress are the top runners. But whatever the initial trigger, according to MT, our relationship with our thoughts, emotions and more primal areas of our brain, are the key to rebalancing the system.

But this is not about using the conscious mind to instruct the body what to do, which is the approach of CBT and various psychotherapies. Indeed, trying to “will” yourself better can actually make your condition worse.

In part 2 I will go into more detail about this

Saturday, February 04, 2012

Love Against Death

In the post this morning I received a copy of Love Against Death, the new album by blues/acoustic singer-songwriter Sean Taylor – even though it’s not due for release for another 8 weeks.

It’s not a pirate copy, but a complimentary one as the cover and internal photos are ones I took of Sean when he played at the Mill Sessions in Gatehouse of Fleet about this time last year.

It was the middle of winter and dark outside. I was given a large empty room, but I only had one studio light with me, and I had about half an hour before he had to be downstairs for his performance. I switched off the overhead lights and shot by illumination of the single light, creating stark shadows and a deep moody atmosphere.

Fortunately for me Sean was less self-conscious than most people I photograph, which meant I was able to get several shots I was really pleased with. I edited the best 3, put them on my blog and sent him copies. I was delighted when he started using them as his Facebook profile pics.

About 3 months ago I was contacted by Sean’s manager, Stuart, saying they wanted to use my photos on the new album. Over the past couple of years, Sean’s profile has been on the rise as he’s played at major festivals and made various radio appearances. Stuart has high hopes this will be the breakthrough album to propel Sean to a much wider audience.

It’s a great album. My personal favourite is track 10, Coal Not Dole.

The rest of the world won’t be able to buy the album until March 26th – 12 months to the day after the TUC ‘March for an Alternative’ protest, when hundreds of thousands of people united on the streets of London against the government’s austerity measures and in support of a fairer society.

The first song on the album, Stand Up, is about this protest – here’s the video for it

He's booked to play at the Mill Sessions again this May - I'm really looking forward to it.

Thursday, February 02, 2012

Farewell old friend

One of my oldest blogging pals, Charlie, passed away yesterday.

I've heard it said you can measure the Internet in doggy years - it moves at about 7 times the rate of the rest of the world. If this is true, then I knew Charlie for over 40 years.

I never met him in person - the Atlantic Ocean kind of got in the way - but it didn't stop me counting him as one of my closer friends in life.

A few years back I wrote this description of him:

Although I've never met him in person, my image of him is a wild haired, unshaven guy wearing an old dressing gown, sitting on a doorstep smoking a fag while winking at any women walking past. Periodically the resident of the house, a tall man in a black cloak carrying a scythe, stops to ask if he's ready to come in yet. Charlie thinks for a moment, glances through the door then says, "Maybe in a minute," before lighting another fag off the stub of the one he's just finishing.

Of course by this time he'd not smoked for some time. However, the emphysema had already settled in and he knew his time was limited.

For 6 years he'd been telling me he was on his way out. Over 3 years ago he told me he'd been given only a year to live, if he survived the winter. 18 months back he was rushed into hospital and we were all convinced this was it - I even had a condolences card at the ready - but in the end I had to score it out and scribble "get well soon" on instead.

I became so used to the idea of him sitting on death's door, without actually going in, I was beginning to think it might never happen - that 20 years from now he'd still be telling me it wouldn't be long now, and I'd beat him to it.

Charlie's intelligence, wit and humour was to be found in all his writings, but his compassion was to be felt behind the scenes.

Like everyone, we've had times of difficulty where blogging about it just wasn't an option. Longer term readers of this blog will occasionally have come across hints of things, but with Charlie I was able to pour it all out in emails, knowing he'd be non-judgmental and be able to offer clear insights, or supportive words when you need them the most.

Partly because of his condition, his blogging was always a bit sporadic. He would go through long periods of time where not a word was typed. Indeed on at least 2 occasions he deleted his entire blog - usually just after I'd mentioned on this one that his was a blog worth visiting.

During these gaps I would begin to wonder if the worst had happened and would eventually prod him with an email just to see if he was still with us. He began to refer to these as the "are you dead yet?" emails, which seemed to amuse him no end.

Unfortunately I can't send him any more of those.

Charlie, I hope you've finally found the peace you desired.

Miss you, my friend.