OA_March 05

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For many of us an M.E. day means the impossible task of managing home, family and self using whatever scarce and precious energy we can muster. We sort the family, feed the cat, flick around with the duster whilst praying there’s enough energy left over to store away for future use.

So what happens to self? When M.E. moves into your life, isn’t self the first thing to go? As illness comes barging in through the front door, isn’t self to be seen making a fast exit out the back?

We spread ourselves thinly because we’ve no other choice as we strive to stay focused and ‘manage’ our lot with whatever tools come to hand, or are recommended to us by friends, family, God or the Cognitive Behaviour Therapist.

We all know how powerfully disabling M.E. is physically, but it affects our emotional side in equal measure. It’s hard enough coping with a bad dose of flu for a few weeks, but how do you manage with an illness like M.E. that’s taken up residence in your living room? It’s not easy and you’d have to turn into a robot to find it so.

It seems to me you get two choices how to deal with emotional issues.

One way is to take control of feelings; keep a rational perspective, apply the logical approach to your day to day activities and maintain a firm hand when unpredictable, often unwelcome emotions intrude into your well ordered and calm daily routine. Who needs pessimism when optimism is close to hand? Who needs negativity when positive thought takes little effort?

Well, that’s one way.

Or, you could just say “Oh bollocks, I’m pissed off and having a really shitty day!” Personally, I take the “Oh bollocks” sort of approach. I can’t get my head around the idea that living with M.E. means feelings and emotions go out the window. We all need to pace and manage but to ‘smile’ through everything, to take the optimistic side, to rationalise, to graciously live with loss (whilst maintaining all other daily tasks) seems a bit bizarre to me. It puts me in mind of The Steptford Wives! Do people with other illnesses or from other walks of life have to do it or is it just us M.E. folk?

We all want to deal with this illness in the right way but is it right to always put negative thoughts to one side or use assertiveness to remain optimistic? Sometimes in our efforts to overcome we forget having M.E. doesn’t mean shutting out what we really feel. In striving to be happier living with M.E., don’t we run the risk of becoming less than our true selves? It’s bad enough when other people lie to us but it’s worse when we lie to ourselves.

Many years ago I began writing into a big notebook every day. It became my ‘truth diary’. I wrote about places I’d been, people I’d known, the good and the bad of my life. There was much of the latter and I made no attempt to rationalise it or smother it in optimistic thoughts. I wrote about the truth of my life with all the nuts and bolts and feelings I could muster. It not only helped nurture a strong feeling of self (and we need that strength) but made me understand what a powerful influence our emotions have on the physical body.

It’s nice to see M.E. Patient Programmes, counselling and advice coming in to the melting pot but sufferers should never feel pressured into rationalising emotional issues in their lives because someone thinks ‘it’s a good way to manage M.E.’

M.E. folk always seem to have an abundance of human endeavour and courage, and these words alone generate deep and powerful images of self. Nobody, but nobody (including friends, family, God or the Cognitive Behaviour Therapist) has a right to take that away.

March 2005

Be True To Yourself

It’s bad enough when other people lie to us but it’s worse when we lie to ourselves.