Yesterday my dodgy ex-landlord accused me of not picking up the phone when he called.
The day before, The Telegraph had published an article about GET and CBT, the UK NHS treatments for CFSME. I was vocal over Twitter about the bad news the publication of this article meant for the ME community.
Yesterday The Telegraph online published this article written by Jill Stratton, 2 year sufferer of CFSME, about the daily symptoms she experiences and her response. Her positivity and equanimity in the face of her illness is something that brought a few tears to my eyes.
What do all of these things have in common?
My dodgy ex-landlord was right. I did, in the main, not pick up the phone when he called me. Now I’ve rested after yesterday’s onslaught I’ve had two thoughts:
- I’d always wondered if he knew I was sick with ME – I live in a small community and word may have got around. Obviously not.
- Maybe he did know, and like thousands of other people out there, including the journalist who wrote the Telegraph article, they don’t understand how phone calls can be so debilitating and exhausting for someone with ME.
Jill Stratton knows though. It’s worth reading her article to show exactly how exhausting and painful everyday life can be.
I have hyperacusis, that’s a word that describes a condition of extreme sensitivity to noise and environmental stimulus.
People can have hyperacusis without having CFSME but people with CFSME often have extreme sensitivity to noise which is called hyperacusis.
Sometimes this can be as bad as needing to shut down every noise around me so that my head stops wincing. That’s the only way I can describe it – wincing.
Noise makes my head shrivel up and grow smaller, the sound waves reverberate like pins sticking in my ears into my brain. Even after the noise ends, the symptoms still remain. I can’t listen to music for long any more for this reason.
Couple that with actually having to find energy to have a verbal conversation, remembering what my ex-landlord was saying, trying to pick through Brain Fog to concentrate and ALSO deal with the peaks of anxiety contact with him provoked and yes, my dodgy ex-landlord was right, I did avoid taking his phone calls.
I wanted to write about this today because now I’ve rested the thought has occurred to me that getting angry with someone with hyperacusis and MECFS because they don’t pick up the phone or like talking on the phone, is exactly like getting angry with someone who is in a wheelchair for having a wheelchair.
To be completely clear: in the last month that I was tenant of my landlord he didn’t try and contact me, neither did his office.
With symptoms like this every time I decide whether to pick up the phone or not and a preference not to speak to people on the phone because of my symptoms, if he had tried to call me he would have been one of the few people that do.
Because of this, I would have remembered.
CFSME is a multi system disease that affects many, many parts of the mind and body.
Sensitivity to noise is but one thing to add to the list of things people with the disease cannot be ‘more optimistic’ or ‘think differently about’ to address and improve, one of the components that The Telegraph article and research behind it proposes can be achieved by CBT.
© Lindy 2015
P.s. although I find talking and having conversations really exhausting I find writing a different sort of tiring, as if it comes from a different part of my brain entirely, one that is less affected by my verbal communication problems.
If any people are reading with an understanding of cognitive psychology and could explain this, I’d be very interested to hear from you….please post a comment below.