Sunday, 21 July 2013

Walking The Tight Rope - mind v matter!

There are two tight ropes in ME. One is strung through my body and it overreacts to ordinary stresses so that rather than setting off a mild ripple it sends a reverberation like a jump jet just went past rather than a challenging phone call with British Gas! And the other is the tight rope I walk each day between mind and matter.

I have no doubt that ME is a physical illness, there are tangible and - if the medical profession can be bothered - measurable physical symptoms, however how we feel and think can also interact with the illness and hinder recovery. I have observed this in myself and others. I think the reason some people find lightening process (LP) ; reverse therapy; stone age diets; Gupta and whatever else 'cures' them is a combination of things. Firstly, the nebulous nature of the disease is frightening, frustrating and unpredictable, in order not to over do it we have to be aware of our bodies and our symptoms and keep checking we aren't pushing ourselves too far, but unfortunately this understandably results in us thinking and worrying about what our illness is up to and how our bodies are most of the time. This reinforces the neural pathways carrying messages from our brain reinforcing all the horrid symptoms. On top of this we can learn that movement and activity makes us feel worse and start to fear movement and activity and shy away from it. This is what I mean by walking the tight rope, trying to find the balance between pushing oneself physically and mentally just a little, just enough not to sink into the awfulness of the illness and not pushing just that bit too much and falling off the wire.

I think that what you need to do when you first hit the wall and what you need to do as the illness progresses are different things. When you first hit the wall you need to stop, you need to rest, you need not to push at your body and try to force it on, but if you rest, remove stressors etc your body will start to recover. The problem is that the physical thing, whatever it is, can start to heal, very slowly over years, but the problem is if you don't start to challenge yourself just a little you will get stuck. Stuck and maybe even spiral backwards. Many many people seem to improve hugely after a few years but then can't quite make a full recovery. And many people will say they were 'cured' by doing x or y. But with most of these people when you start to talk to them you see that they had made huge leaps forward in recovery before doing x or y or they had been ill for 10 - 20 years before doing x or y. Well what if what had happened was their bodies had healed, but the mind was now stuck, stuck in the ME loop, not quite able to take that last step forward and then they go and do something like LP and hey they are 'cured' what they perceive is that LP cured them, but what they have forgotten is how very ill they were 5, 6, 7, 8 20 years earlier, how far they have already come and this last push was just what they needed to push the mind over the finish line and start thinking they can get 100% better.

I was recently talking to someone who put their recovery down to Reverse Therapy and LP, but once I started asking about it it became clear she had already made huge progress, and these tools helped her put the last pieces of the jigsaw in place to make a full recovery. It made me appreciate that when I tried Gupta after only being ill 6 months and it moved me forward hugely, but didn't 'cure' me, perhaps it couldn't because not enough time had gone by for my body to have healed. It has made me think that perhaps I need to revisit my Gupta methodology and start implementing it again now that my body has had a further 18 months to heal itself in. That maybe I need to give it another push, whilst keeping to my schedule and using water therapy, but within that framework start challenging the thoughts about the body and illness once more.

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