Over three weeks since my previous post and nothing much has changed. I have no excess energy and in particular my legs are struggling, stairs are a particular strain. I've started getting pains in my thighs and knees. My thighs are complaining if I sit for too long. These are new symptoms which have been concerning for me. It worries me that things seem to be going backwards right now and not forwards. It has been over 4 and a half years now and I feel like my ME is entering a "new Phase" one that I'm not particularly happy with.
So, what to do?
I have felt myself struggling mentally with this physical deteriation and I recognise that this is something I need to get on top of. In an attempt to address this I have started reading a book by Phil Parker, inventor of The Lightening Process Now I understand that there is much scepticism around the Lightening Process and it's effects on ME patients. How can a psychological process claim to fix what we know and scientific evidence now proves to be a physical illness? See this
I guess your response to that question depends on how far you believe the mind and body are interconnected and interdependent.
I'm not about to rush off and do the Lightening Process - although I won't rule that out, because like most, I will try anything at some point - but I do need to address my current thoughts of "this isn't ever going to go away, this is it now" which I find myself thinking more and more frequently
these days.
The book is called "Get the life you love now" and is not specifically for ME patients, but is very useful for pointing you back onto the road of positive thinking. I've always been very good at taking responsibility for my recovery and knowing that any actions to change the current situation need to come from me, but this book is just helping remind me of the importance of positivity, and how to pull myself back down that track and believe that I can get better.
One of the things the book has made me think about is what things are getting in the way of my positivity. Having given this lots of thought one of things that comes to mind is my current need for some people to acknowledge and recognise my illness. Don't get me wrong now, this is not people close to me, believe me, they know and recognise the impact this has on my everyday life, it's those on the periphery. You know the sort of thing, those that think I'm a bit tired, that I'm just into quirky medicine and diets and don't understand the desperation behind why I am willing to try anything. They might think I'm being a bit over the top about insisting that I'm getting home to bed at a certain time for example. These are the people who are not there and do not see the after effects of certain activities for me. I guess with these people I might try and spend a bit more time telling them about how things are going and how I'm feeling or try and explain why I won't do something. Actually when I'm doing this I'm just reinforcing how bad I might be feeling. Every time I tell someone how things are, I'm also telling my own brain how things are and that's not good.
Why do I even care? Why do I care whether these people understand or not. It shouldn't matter to me, I don't want it to matter to me. What they think, whether they believe in or understand ME is not going to make any difference to my recovery. This then is an area where I can change my behaviour and thinking and stop reinforcing negativity.
So, what to do?
I have felt myself struggling mentally with this physical deteriation and I recognise that this is something I need to get on top of. In an attempt to address this I have started reading a book by Phil Parker, inventor of The Lightening Process Now I understand that there is much scepticism around the Lightening Process and it's effects on ME patients. How can a psychological process claim to fix what we know and scientific evidence now proves to be a physical illness? See this
I guess your response to that question depends on how far you believe the mind and body are interconnected and interdependent.
I'm not about to rush off and do the Lightening Process - although I won't rule that out, because like most, I will try anything at some point - but I do need to address my current thoughts of "this isn't ever going to go away, this is it now" which I find myself thinking more and more frequently
these days.
The book is called "Get the life you love now" and is not specifically for ME patients, but is very useful for pointing you back onto the road of positive thinking. I've always been very good at taking responsibility for my recovery and knowing that any actions to change the current situation need to come from me, but this book is just helping remind me of the importance of positivity, and how to pull myself back down that track and believe that I can get better.
One of the things the book has made me think about is what things are getting in the way of my positivity. Having given this lots of thought one of things that comes to mind is my current need for some people to acknowledge and recognise my illness. Don't get me wrong now, this is not people close to me, believe me, they know and recognise the impact this has on my everyday life, it's those on the periphery. You know the sort of thing, those that think I'm a bit tired, that I'm just into quirky medicine and diets and don't understand the desperation behind why I am willing to try anything. They might think I'm being a bit over the top about insisting that I'm getting home to bed at a certain time for example. These are the people who are not there and do not see the after effects of certain activities for me. I guess with these people I might try and spend a bit more time telling them about how things are going and how I'm feeling or try and explain why I won't do something. Actually when I'm doing this I'm just reinforcing how bad I might be feeling. Every time I tell someone how things are, I'm also telling my own brain how things are and that's not good.
Why do I even care? Why do I care whether these people understand or not. It shouldn't matter to me, I don't want it to matter to me. What they think, whether they believe in or understand ME is not going to make any difference to my recovery. This then is an area where I can change my behaviour and thinking and stop reinforcing negativity.
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