I WISH FOR :
To be walking on a beach, feeling the warm sand under my bare feet
To feel the sunshine on my face
To be near to water, looking out at a huge ocean, all the greeny blue water
To see the calmness of the hills, their stability
To swim in the sea, or even just walk in it and feel the water around my legs
To sit outdoors and lean against a big solid tree, eating a sandwich, looking up at the sky
To sit on a balcony early evening, looking out at a view of water and hills. And faraway houses.
Maybe with a nice glass of chilled wine
To feel the warm evening air flowing thru my loose hair
To eat a seafood salad in an outdoors cafe, perhaps looking onto a quiet beach
To be able to read a good book and just lose myself in the story
To listen to calming beautiful music
To be very far away from all worries, all insecurities, all fears about the future.
Just for a while . . . .
Not asking for a perfect life – but just for some things to get a little easier.
Bankruptcy for me has been absolutely no relief whatsoever. It has been brutal.
It has replaced some stresses with different stresses and worries which seem to be keeping me quite unwell. And I suspect the sheer trauma and impact of it all may have made some of my symptoms even worse,
eg, severe brain fog (aka cognitive dysfunction or brain dysfunction)
headaches, and hyper-sensitivity to things like noise, light, using laptop, mobile, watching TV, even listening to music
Hey Ho, nobody said life would be easy . . . .
I crave the company of people who are :
gentle
calm
kind
have empathy and compassion for others
understanding
non-judgemental
are willing to learn, to listen
have varied interests
have a good sense of humour
don’t have rigid black and white opinions
have had life experience which has given them an open mind
I need to avoid people who are :
ignorant and unwilling to learn
abrupt
sarcastic
(sarcasm when aimed unfairly at me is absolutely lethal for my ME, an instant trigger for all my symptoms escalating)
people who make fun of, or laugh at, others’ limitations, or problems
people who make jokes about things that are not at all funny
have rigid, unbending opinions
who get bored easily – there is so much in life to experience (how can people get bored . . . ?)
But I guess we would all like these things . . . !
Your Jaw Never Gets Tired 
#ME Insults on Twitter
October 21, 2012
Anne Raw Emotions bullying, comments, ignorance, invisible illness, society, things People Say, twitter, understanding 16 Comments
ME Insults
In my post of 6th Oct I mentioned that the poor treatment of people with CFS or ME was a scandal. And I had mentioned the ME Insults timeline on Twitter. A bit more about this now.
Twitter is marvellous for connecting with people worldwide on endless topics of interest.
Recently someone posted (tweeted) a message suggesting that people share any insults they had received since having ME or CFS. This then quickly expanded to include any comments which were – ignorant, hurtful, nasty, silly or just plain stupid. It was suggested that any replies included #MEinsults in them – so they would be recorded in a separate timeline in Twitter.
And it just took off.
Hundreds of people posted messages in just a day or two. What started off as a way of sharing and venting frustrations about how folk had been treated became more serious as all the posts (tweets) came thru. And were read. Seeing so many examples in black and white of how many people had been treated poorly (by GPs and/or friends, family, relatives) was incredibly shocking. None of it will be news to many people who have had CFS or ME – especially if over a long period of time. But seeing so many examples in writing somehow made it really hit home.
Some random examples from the #MEinsults timeline as follows :
“You have been unwell for far too long now. Its time my son found himself a new wife.”
(Has got to be one of the most cruel ones.)
“That shooter had something wrong with his head – and you have too.”
(Incredibly from a GP to his patient and referring to a gunman who had shot and killed several people in the city earlier that week.)
There is something wrong with your head.
(A variation of above but from a GP’s receptionist this time. Yes – the receptionist.)
“It doesn’t matter how bad it makes you feel – you must keep doing it.”
(My 1st GP’s view on keeping on exercising on top of working full-time while my health and symptoms got worse and worse.)
Do you not get bored in the house all day ?
We all get tired but we just have to push on.
Maybe you should try to be a bit more positive.
If you bring her back to school tomorrow then we will say no more about it.
(From a head-teacher to the mother of a severely affected pupil.)
I couldn’t be bothered with that.
I’m not the sort of person who would get that.
I don’t really believe in all that.
I don’t think he is really trying to get well.
You really shouldn’t keep him indoors so much – its not good for him.
(From a GP to the mother of a severely affected sufferer who had deteriorated to the extent he was almost bedridden.)
We don’t do home visits for fatigue here.
(A GP surgery refusing to visit a severely affected housebound sufferer.)
This is just a very brief selection.
Some thoughts :
Why is this still tolerated today ? And why do people feel it is ok to speak to sufferers like that ? And would these sort of comments would be made to people with cancer or multiple sclerosis ?