Hold the press! We have a scoop! One person in London has recovered from chronic fatigue*!
Hold the press! We have a scoop! Several hundred thousand people throughout the UK with ME/CFS are suffering in 'the shadows*', are not being believed, are being ridiculed ... by the UK press, by UK academics and doctors and by UK CFS/ME practitioners.
That, to me is balance.
This is the introduction to my next blog about balanced reporting of ME/CFS in the press. My 500 words will be carefully thought out so it may be tomorrow before it appears.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
In the meantime, today's blog is about the effect on people of living with ME/CFS.
I visited my very dear aunt and uncle yesterday. My uncle is 91 and my aunt is 89. They both dispute this because they feel ... and also look ... years younger. I last saw them in ... August! I've been flattened, not by tiredness but by an exhaustion that defies definition; by recurrent infections; week-long migraines (that have been eased by a change of medication); by sore limbs and joints; by days when I could barely get out of bed. My family listen with dread when I say I'm going to lie down for five minutes ... it usually extends to three or maybe four hours and any plans for the day are squished. When I was little, my sister and I dreaded our mum saying, wait just five minutes ... we started to call it a 'mummy-five-minutes' and we knew it could last for many many more minutes or even hours (often because our mum, an avid reader, was gripped by a book she was reading.) I'm now the mum with the 'mummy-five-minutes' that are spent ... sleeping. (Incidentally, my mum also had a phone-voice! Did anyone else's mum have a phone voice? We had a rather poshly spoken 'aunt, who wasn't really an aunt, and we could always tell when mum was speaking to her on the phone because her voice became plummy.)
I digress ... back to topic... how ME/CFS affects lives. To answer this let's ponder what we would do if a real cure could be found for ME/CFS? I'm looking for one word but it'll take a few more until I reach that word ... I'd be a better support to my sister who's just started chemo after a cancer diagnosis, I'd take the dogs for a walk every day with my children, I'd stop daytime sleeping, I'd visit my aunt and uncle once a week, I'd go back to working full-time to a job I love, then have time for activities in the evening and weekends like most of my colleagues do - joining choirs is the popular one at the moment, which often prompts bursts of singing in the office, I'd ... there's loads more but the word I'm looking for is PREDICTABLE ... I'd make plans and I'd follow them through ... I'd be predictable.
PLEASE MAKE A COMMENT WITH ONE WORD THAT WOULD DESCRIBE WHAT YOU WOULD DO IF A REAL CURE COULD BE FOUND FOR ME/CFS AND, IF YOU WANT, WRITE MORE TO DESCRIBE WHY YOUVE CHOSEN THAT WORD.
.... Oh, and I would put the Christmas tree back in the attic!
No comments:
Post a Comment