Tuesday, 29 October 2013

Mindfulness and M.E- being in the body

 Not long after my hospital experience I attended an eight week mindfulness course. It turned out to be one of the best decisions I have ever made. Mindfulness is now a major part of my life and has helped me to accept my illness and all the chages that it brings. The body scan meditaton is an important core practice in mindfulness as it helps to develop awareness of the body. Studies have shown it to be particularly effective in helping pain management and general wellbeing, decreasing stress and helping to develop acceptance of the way things are, even if they are not how you would like them to be, which, let's face it, they are not.

Body scan meditation

For those of us with M.E, it can be very difficult to view your body in a positive light. After all, most of the time your body is out to get you! For many who practice mindfulness, the focus is on developing awareness of the body without judgement or preference.

I would argue that those of us with M.E have an acute awareness of their body, as the range and severity of symptoms is such that it becomes very difficult not to notice them. Add to that the need for pacing and listening to your body, this adds up to a LOT of focus on the body and the unpleasant sensations. This can lead to a negative self image, as we bcome disappointed and sometimes angry with our lack of ability, we can feel our body has let us down.

This body scan meditation is designed to cultivate a different relationship with the body, one of kindness, understanding and forgiveness. When we can learn to relate to the body and any pain or dis-ease within it, we can find a more peaceful existence where we do not turn away from the unpleasant or unwanted.  When we lean gently towards the pain and try to view it objectively, without attaching judgement and reacting to it, we can lessen our suffering.

The body scan is best practiced lying down comfortably, why not try it every day for a week and see how your experience changes and delvelops?

You can find body scan meditations on Youtube or in a variety of books and CDs. Some of my favourites are:

Mindfulness Meditation for Pain Relief by Jon Kabat-Zinn (CD)

Mindfulness for Health by Vidyamala Burch

Mindfulness: A practical guide to finding peace in a frantic world by Mark Williams and Danny Penman

Bodyscan: Managing pain, illness and stress with mindfulness meditation by Vidyamala Burch (CD) 


Saturday, 26 October 2013

Hello? Is it M.E you're looking for?......

What a difference a day makes. At last I have been told I have M.E.

It doesn't change my health, but it does change my treatment. No longer will I be subjected to months of psychotherapy. No longer will I be denied physical aids to help me move around outside and in my own home. No longer will I be advised not to close the blackouts on a bright day, even though the light gives me a migraine. No longer will I be told 'not to give in' to my symptoms as this is 'making them worse'. No longer will the responsibility for my illness be placed at my door. All these months of fighting, thinking that somehow I must be making this happen, somehow wanting to be sick. 

I don't need time to accept this new diagnosis as I've known for some time I had M.E. Getting the doctors to agree was the hard part. On my journey I have learned essential survival and managing skills such as pacing. I have made some great friends who understand the illness and how to live happily while being chronically ill. I have developed ways of making the boredom easier by doing small crafts like knitting. I've tried hard to maintain a sleep cycle which resembles that of a healthy bod. But if only I had been correctly diagnosed from the start, I could have rested when I really needed it instead of always pushing myself to improve. Yes, delayed/ wrong diagnosis may have made this worse or make it last longer. But I can't be angry or bitter. They didn't set out to harm me or hold me back. There is so much that doctors don't know and can't treat right now.... if only there was more research. And anyway...I don't have the energy.  I have to focus on getting the help I need from the professionals who can provide it.

Today is a good day.

Sunday, 8 September 2013

How many neurologists does it take to change a lightbulb?

You have a neurological condition. A neurologist can and will make you better. Right? 


 I have huge respect for all medical professionals, I think the job they do, day in, day out to help and care for people is inspiring. However, when I became ill I realised one important fact:


Unfortunately, despite three weeks of being acutely, physically ill in hospital, my complete and devastating physical illness was first diagnosed as a psychiatric problem, and I had to undergo months of 'talking therapy'.

Being the sensible soul I am, and being desperate to get better, I promptly attended my appointments with my neuropsychologist. To sum it up, my experience of talking therapies varied from hysteria (on my part) to indifference (also on my part) and all states in between. Three things were becoming very clear.

1) I really like talking. 
2) It felt good to get things off my chest.
3) It was not making any difference to my symptoms.

After gradually becoming worse, I lost the ability to walk, talk and chew and many other unpleasant symptoms, so on the advice of the neuropsychologist, I saw a different neurologist. 

He immediately diagnosed me with the neurological disease known as Myalgic Encephelomyelitis, or M.E.

M.E is often descibed as a 'functional disorder'. A functional disorder, by the way, means that the hardware is ok but the software is not functioning properly, all the bits are there, they're just not doing their jobs, slacking off, on strike. That's how my neurologist described it to me anyway. But there is a strong evidence base for M.E being organic, i.e. NOT functional. It affects every cell in my body and plays havoc with my immune system. The idea that this devastating illness can be cured by talking about it is absurd and crazy to me. I want to be better. I have done everything any doctor has suggested I do. I am still not better. In fact, some of the advice I have been given by medical people has been very damaging. 

M.E is not just 'feeling tired'. It renders me unable to do even the simplest of tasks and has ripped apart my life. And for some reason which is entirely unknown to me, there is no significant money being spent on research.There is no cure.

Welcome to the world of M.E.

So! Time to begin.....

Location: Bed. Master bedroom, aka my 'night bed'. It's the afternoon, so I shouldn't strictly be here, but they're my rules so I can break them if I want. Just one month before 'The Event' when I became very unwell indeed, we moved house. There are three double beds in my house, three sofas and numerous chairs, most of which I can only sit upright on for a short time. Lots of options. Lots of lying down. Sleep itself can be elusive though, so I try to keep actual sleeping for my night bed. I think they call it 'sleep hygiene'. Yes- it is a thing.

You see, like many people with an invisible chronic illness, you only see me on the good days. Because on the bad days, I'm lying in bed groaning. Every movement or swivel of my eyes causes me pain. A trip accross the room leaves me breathless and exhausted. My limbs ache as if full of poison, my head spins, I struggle to string together a sentence. I can't remain vertical so have to lie down. These are the bits you don't see, the bits I like to keep for the lucky people looking after me. 

On a good day- I may make it out for a coffee, or out to a friend's house or a quick spin around the shops (pushed in my wheelchair), but the aftermath of this is up to a week of increased symptoms and general rubbishness. On a good day I always look much better than you expect me to look.

You won't hear me telling you about my symptoms, you might not know how much pain and discomfort I am in. I may have made it out the door one day, but please remember, even if I look good, It does not mean I feel good or are better. I only wish that was the case.

Sunday, 18 August 2013


Why oh why am I writing a blog about being ill? Well..... it's not to moan, no not at all, although you could argue there was a lot to moan about. No. It's because I'm living with a chronic, debilitating illness which is very complex and difficult to understand. I wanted to find some way of expressing what it's like for me to live with this illness every day, to help my friends and family to understand. So that when I cancel that visit, that trip or that lunch, you'll know why! (Yes... now the real motive emerges!)

Since becoming ill I've been very worried about losing the 'Louise'ness, the special something that makes me 'me'. Hopefully you will find me in this blog.