.....she'd probably be happier

.......actually she'd probably be happier with a cure for M.E. because she doesn't seem able to stand long enough to operate the wretched thing at the moment !.....oh and a halt to all the back-stabbing and ego building of the scientists and psyches...

but in the short term let's try and put it all behind us for a few days and enjoy Christmas as much as we can.

Merry Christmas to all my blogging chums and here's to a fulfilling, healthier, progressive and healthier New Year xxx

Christmas Rush

In the past few days we have had to have a real push to try and get another room finished in this, seemingly, endless saga of decorating...and no I don't mean tinsel and baubles and trees...I mean Polyfilla and rollers, paint and sandpaper, emulsion and vinyl silk ...and wallpaper. I spent two whole days (with minimal rest periods) wallpapering over the weekend and into this week and I am tired.

This tiredness is veering between fatigue that pleads for me to go back to bed and wired/tired where adrenaline whooshes through me like a torrent and I am almost hyper. Well...not almost...I am. Yesterday somebody said something to me that was perfectly mundane and yet somehow I found it amusing and laughed and laughed until I was crying ...happy tears but laughing all the same..at something not funny at all. Yesterday I was so nattery, nattery and so outside my boundaries whilst chatting to someone on Facebook that today I felt duty bound to send a message for being so over-the-top. I wasn't offensive and the recipient of this 'out-of-control-puppyness' was fine about it all (thank God) but I felt mortified. I felt like I had become the legless one at the party who has to go to everyone the next day and apologise for dancing on the table with your knickers on your head !

Jodi Bassett has written about these adrenaline surges here and now I think of it I realise that this has been going on for years. Whenever I'm tired but in a reasonable phase of health (i.e.not at death's door) I become almost manic....rushing about too quickly, talking at nineteen to the dozen, stumbling over words, rushing through to do lists.....until I go 'phut! I seem to have no internal regulator that knows how to pace. Is that because I have had M.E. for so long....over 35 years....or was I always like this anyway and that has led me to become more ill ?

Certainly there does seem to be a common thread running through the lives of people I know who have M.E.: prone to perfectionism, wanting to care for other people, wanting to ensure everyone and everything is 'all right, putting other people before oneself, and pushing on...regardless...always pushing on.

I've started reading Toni Bernhard's book 'How to Be Sick'. Almost everyone I know in the 'M.E. Community is reading it too. Once again there in black and white is the story of another caring, conscientious individual; always trying to do her best by her spouse, children, grandchildren, her students (she was a Law Professor) ...going back to work despite everything, despite it being obvious (in hindsight...always in hindsight !!!) that it would be better to stop working, stop doing and just be. This is not intended as any criticism of Toni...just an observation: an observation of how many of us seem to follow that path. I know I did. Time and again I fell and time and again I got up, dusted myself off and went back into the fray.

What interests me is the lessons that Toni says she has learnt/is learning from being so ill for so long (she first became ill at the about the same time I was diagnose in 2001). It would seem that Toni has always been interested in exploring a spiritual path and in particular Buddhism and so she has used that experience and knowledge to try and make sense of what has happened to her. Interestingly too, I have also felt an affinity with Buddhism and yet not had the same time or 'push' to explore that way of seeing the world to the extent of Toni. Nevertheless I still find myself nodding all the time I read the book and there does seem to be only one way to really deal with being unwell: to somehow yield to it and accept it and understand that somehow, for some reason this is how it is for you and how it is meant to be. No matter how uncomfortable, how gruelling, how miserable...this is how it is. No amount of wriggling and anger and frustration (though God only knows we all feel those things because we are human, because we are imperfect) will 'fix' things. For now, it is as it is and once that acceptance is there, the situation becomes a little easier to bear.

I suppose this post and the last have a common theme...in that acceptance seems to be the way: not giving in but resting back and 'watching the day' as someone once told me and trusting that somehow 'all will be well'

All shall be well

Many random thoughts rattling through my head so this will be a stream, (more like a trickle) of consciousness: you have been warned.

Thinking about how people deal with their dilemmas, BIG life events and tragedies.

Recently I've been brought up close to how the rug can just be pulled from under you. I had my wisdom teeth extracted and, as anyone who has followed this blog, that was a HUGE deal for me: the build up was two years with no end of negotiations and 'wriggling' on my part and finally I managed to psyche myself up to going and getting the job done. There is no way to communicate how pleased I was to have it over with or how proud I was of myself for having done it. I was literally ...LITERALLY...jumping for joy.

The pay off is that the anaesthetic and antibiotics that I had afterwards have not suited me at all. I can feel deep slippage in the progress department and it feels mighty scary...especially three weeks (or less) before Xmas and the son's 16th birthday. Just when I need to feel some sense of stability and safety in my energy envelope I feel anything but and I'm treading on thin ice. I know I've been here before and I know I have managed to pull out of it with careful management and pacing but, still, it scares me because before that tooth extraction I was feeling fairly chipper and, at times, ...whisper it....almost normal..or normal for me and the relapse of last year stills haunts me.

Christmas for me is a double-edged sword. On the one hand I love buying and making presents for other people and my loved ones. On the other hand there have been many Christmases which hold horrible memories that I don't want to revisit and yet I feel forced to do so because its Christmas and the sounds, smells and 'jolly festivities' are everywhere now...or if you shop at the Co-Op they've been everywhere since the end of August !

I wish I could be more open, more honest, more forthright in this blog. I so admire other people who blog who have the ability to share so much but, in all honesty, I can't. It's just not in me to be too open about myself and that because of the past. Even writing that is scary to me ...........Its just that if things were going to go wrong they seem to have done so at or very near Christmas so that, as for many people, the older I get, the more ghosts and bad memories fill the Christmas space.

Yesterday I was in town and turned round to see an old work colleague standing just near me. We haven't seen each other for about 7 years. She is a truly amazing person. She has overcome no end of adversity, runs a small charity, has brought up three children of her own, 4 foster children and adopted two and as long as I've known her (about 20 years) she has always had a smile on her face: everything is seen as an opportunity, as a possibility for something new and something good...even when a situation facing her or someone she knows looks so grim.

When our son was born and it turned out that he had all sorts of difficulties ( there had been no warning...it was a perfectly normal pregnancy) she was one of the first people to phone. She was so positive, so 'up', so full of hope and even though I knew she meant well I was furious with her. I couldn't see how she could be like that .....here we were with a totally unexpected outcome, a first, new baby at Xmas in need of all sorts of tests, an operation, a diagnosis and the hospitals all working at 25% strength because it was Christmas and we were told we would have to wait until the New Year...and yet she was hopeful and joyous !

Of course in the end she was right.....that baby is about to be 16 and, though there are difficulties and the thought of him going away from school and launching in to the world is scary ....he is lovely, personable and managing so well academically and socially and it was only after yesterday's meeting that I could see exactly what she meant in that phone call so long ago.

Though it's not in my nature I have to learn to be more like that friend and other people I've met more recently who go ahead with real fortitude and positivity. My trust was shattered years and years ago but I have to have faith in the future and know it will be O.K.: this seems to be my lifelong struggle, the lesson I have to learn ---- to have to constantly remind myself that all will be well and to have more faith in myself and a good outcome