Perhaps this is why ME is so maligned

What is so terrible is the invisibility of pain. 


You just can't see the burning throbbing screaming writhing nerve pain shooting in my whole body, the black blankness in my mind, the massive throbbing head pain boring into my brain the burning stabbing itching eye pain, the swollen nauseating stomach pain, the effort of no energy in your muscle, the brick wall affect of breathlessness, the indefinable jelly sensations as my muscles lose their tone and paralyse, unable to function or hold me up. 


If only it was illuminated in multi coloured hues so that the agony was visible and the distress and bizarre experiences obvious to everyone else. If only. Perhaps then their might be some level of comprehension of the horror of my experience, the devastation people wreak upon me in their happy ignorance and the absolute inability I have to function or communicate effectively with anyone at all or engage with normality for even the simplest thing.


 Perhaps that is why ME is so maligned and people so persecuted and ignored. People just don't get it, but in my experience it is much worse than that. They do not want to get it. It suits them that way.

Comments

  1. TheresaJuly 21, 2012 at 7:58 AM

    Hang on in there Linda. Love Theresa xx

    ReplyDelete
  2. TheresaJuly 21, 2012 at 8:00 AM

    Flipping heck! It took me three attempts to prove I wasn't a robot! x

    ReplyDelete

Post a Comment

Popular posts from this blog

When I am 64 and other false positives : The PACE Trial.

Image
Greg Crowhurst 6 th February 2013 “Much of what we think we know based on conventional statistical studies published in the academic literature stands a good chance of just not being  so “  Roger Pielke Jr http://rogerpielkejr.blogspot.co.uk/2012/03/false-positive-science.html Imagine  I am a psychiatrist and for £5 million, say ,  I want to prove that CBT and GET are a safe and useful treatment  for ME. The good news is “ how unacceptably easy it is to accumulate (and report) statistically significant evidence for a false hypothesis ,  according to Nelson and  Simonsohn (2011).  Their frightening  paper “ False-Positive Psychology, ” shows  how  “ undisclosed flexibility in data collection and analysis allows presenting anything as significant ,” .  In fact Nelson and Simonshon statistically  “prove” that listening to “ When I am 64 ” by the Beatles can   make you a couple of years young...
Read more

Paralysis, a qualitative study of people with Severe Myalgic Encephalomyelitis

Image
Greg and Linda Crowhurst (August 8 th 2013). Synopsis Paralysis is a symptom that is rarely highlighted in the literature for ME, yet is found amongst the most severely ill ME population and even some of those not so severely affected. My wife has experienced it for almost 2 decades, without adequate exploration, alongside exposure to denial and dismissal, ignorance and neglect as well as harmful treatment. We wanted to find out if there was anyone else with a similar experience to my wife's or if she was a rare and very severe case. We wanted to highlight the seriousness of this symptom and ask why it is being ignored and down played not only by the medical profession, with its inappropriate focus on fatigue and the psychosocial response, but also by the main charities, none of whom, flag it up as a main symptom. This qualitative research study indicates that there are significant others experiencing apparently similar paralysis and that my wife is not un...
Read more

DO NO HARM, DO NO BETRAYAL

Image
By Diane  I'm not sure where to start but this is my story so far.  My name is Diane and I'm a carer for my adult daughter, Lili, who is completely bedbound with very severe myalgic enceplalomyelitis.  For Lili, M.E. didn't come slowly.   It very rudely crashed into her life and very quickly stole her health, taking bigger and bigger chunks of it as she deteriorated.  It all began when she experienced a gastric-flu virus of a sort she had never experienced before because this time she never regained her health.  A couple days later, she woke up with agonising head pain 'like her brain was on fire', with severe neck pain – she also couldn't move her neck, and her whole body was paralysed.  She's not sure how long she stayed like this as she was in and out of consciousness but she truly felt that she was going to die because her body was undergoing an extreme crisis.  To cut a long story short, it took a year to get a diagnosis durin...
Read more