Sleep ( lack of it) dam sheep !!!

I’ve been struggling of late ….. One thing and another….

I’m assuming it had a lot to do with the loss of my sister… It would have been boo’s birthday May 11th…… We only lost her October last year… Very suddenly.. Very traumatic…


So as May 12th was awareness day for #ME I found it impossible to gather myself together to even function …..  The world revolved without my input…. This got me thinking…. About how much of my valuable energy I can continue to devote to trying to raise peoples awareness …


i feel eel for some time I’ve looked on from the sidelines…. Unable to add meaningfully comment or value to anything…… I used to spend most of my time reading and searching out information….. But TBH I just don’t have a clue anymore…. I think I’m truly burnt out…..


Ive be watched and seen people hurt and deride others for not supporting their cause… I’ve seen mean and unkind comments … I’ve seen such division within a community that has been abused by the medical profession and the world at large… Our condition has been neglected for so long….


How do we change this status quo ? ….

what can we do to change the image of this illness that the world ignores ? …..

we need a cunning plan…. Not a reaction to the next crappy article or flawed bit of research……

maybe if we collectively did something … We could actually be a force to be reckons with instead of fragmented chaos…..


I’m not negating anything that has been done or achieved… But I’m that dam confused who are the good guys and who are the self serving bastards in are way ????


lack of sleep can lead to following the sheep…. Not good……


3 thoughts on “Sleep ( lack of it) dam sheep !!!

  1. Hi Chris,

    You raise such an important point. We do seem very much like a collection of individuals, each doing our best in our own way. I’ve long been dismayed by the politics of ME. So much so that I refuse to write about or comment on it. A lot of it is fed by the sheer desperation of our situation and the human trait of lashing out in fear.If real progress is to be made and sustained then our community has to find a way to come together and act in concert. Do I think this will happen any time soon? I doubt it and, meanwhile, I see very ill people expend energy and strength going round in circles convincing each other of the veracity of their position. Time and precious energy that would frankly be better spent in taking good care of themselves. I’m guilty of it myself probably.

    My very best wishes to you, especially in your grief.

    Mary xx

  2. Oh Chris! I hear you. I am very sorry to hear of your sister passing away. I know what you mean about not being able to keep up and do what you used to do. I’ve been feeling the same way. I still do what I can, but it is not what it used to be.

    I hope you’ll remember that your health comes first. Take care of yourself–that is what is most important. I’ll be thinking of you and hoping that you will feel better. ❤


  3. Hi Chris…I’m sorry I didn’t see this back when you wrote it or else I’d have commented back then as well as send you numerous hugs via Facebook etc.

    You’re so completely right about us needing a cunning plan. So many, in fact most, of us are running round like headless chickens reacting and often using energy we simply don’t have to articles in the media and even studies by so called professionals that do us no service at al, in fact most of the time they harm the ME community greatly and hence the cause to gain greater recognition and further biomedical research.

    I think you’re wonderful btw. You have such a good grasp of the politics and I know because of the exhaustion you feel that you imagine you’re not playing your part but believe me darling you really are! I gain so much knowledge from you, a lot of what I share on FB or Twitter comes from you. I do worry that you do too much and I do understand your feelings of not doing enough compared to the pst you…but you are still an enormously important part of this fight we have on our hands.

    I just hope you can take time to nourish your soul with a bit of painting or something else you enjoy mixed in with all the great campaigning you do…stay strong darling. C.x

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