Wednesday, 7 July 2010

We live in a suburb area between two hospitals so consequently we hear Ambulance sirens all the time.  Both hospitals have Accident and Emergency departments and they must regularly use our road to transfer patients.  You'd be amazed at the number that scream past, it makes you think every time of some poor person whose life has just taken a turn they maybe weren't expecting.  I send them a thought when I can.  I try my best to take each day as it comes, what more can you do?  We only have this moment...and this moment, a Buddhist philosophy though I'm not a Buddhist.




 I was told I had something called M.E. nearly fifteen years ago now, I suspect I've had it longer.  M.E. or Myalgic Encaphalomyelitis is a distinct organic neurological disorder recognised by WHO the World Health Organisation with the neurological code G93.3.  There is substantial evidence indicating that M.E. is caused by an enterovirus causing damage to the brain.  As yet there is no one single test with which to diagnose all patients.  There are tests available but many people do not have access to these and most standard tests are inadequate in revealing M.E.  These standard tests may give normal results in up to 90% of M.E. patients, of which I am one.  Try http://www.hfme.org/  should you be curious to find out more, this is a brilliant site written by a lady with severe M.E. who writes succinctly yet in language you can actually understand!

It's taken me three years to pluck-up the courage to put this 'out there'.  There still remains such controversy and downright ignominy about this disorder.  As Jodi Bassett says,

'You soon find out that the disease you have is one of those that is treated differently from many others, that not every disease is treated equally and that bizarrely this has nothing to do with type of disease, the severity of the disease or its symptoms or testable abnormalities, or the possibility of death, but other non-scientific and non-medical factors. It has to do with political and financial factors, and marketing...........leaves you with no real care at all.  Even worse, not only with no appropriate care at all, but often subject to serious mistreatment from the professionals meant to be there to help you.
Most people trust absolutely that if they get severely ill, they can go to an emergency room and be given appropriate medical care. I used to think that too.'

I used to think that myself, one time being asked by a young house-doctor at hospital, 'Have you ever heard of the word hypocondriasis? I suggest you go home and be at one with your body.' On a different occasion during a crisis visiting a GP I was told,  'I needed a kick up the bum'.   Consequently I only visit the doctor when I absolutely have no alternative.  I have reached the age of sixty, lived and worked in five different countries, had three children.  Like most people my age I've lived through life changes and money worries, tragedies, divorce and unexpected deaths, all serving to give you a chance to find your own inner strength.  So I take umbrage at being told,that I don't recognise when I'm feeling truly ill, that I....'just need a kick up the bum.'  Believe me if I thought I could cure myself that way I'd be walking around with a sign over my rear end saying, 'Kick here!'

5 comments:

Lynn said...

I am so glad you posted this, Jane. Here's hoping it might be a lifeline for someone else who has been shooed away by an eye-rolling physician somewhere.

Take care, friend (and some time I would love to hear more about all of those countries you've lived in!)...

Pamela Terry and Edward said...

I had migraines for years. Unbelievably miserable things, migraines. People used to say, "oh, it's just a headache. I've had those.". Like you, I found this incredibly frustrating and sometimes found it difficult not to wish a migraine or two on them!!

Half-heard in the Stillness said...

Hi Pamela, oh! I know what JUST what you mean! It's really hard, I think to myself 'Well it'ud do you good to have even a portion of this!'

...Miss...Maddie's... said...

One can never judge nor ridicule the pain that another is feeling.
I can only hope that you shall find relief soon and that you may participate more in the things you enjoy.
Susan x

Jane Gray said...

Hello Jane... thanks for visiting my blog and leaving such lovely comments :-).
I understand what you are going through, as my daughter had ME in her teens, following a glandular fever type virus. It took her years to recover, after hardly having a day's illness as a child. She had really long, very thick hair, most of which was lost, and though it has slowly recovered, it never regained its previous glossy thickness.
The Time Sculptor