Social media (dis)content – ME and Mine , part 1

I’ve fallen behind with #everydayinspiration tasks. Task 15  Task 16 suggests mining your social media content. As awkward as ever, I’m skewing that prompt, trying to keep it brief, and unearthing my discontent (task 15 post). (In parts now, so as not to waste 900 words, albeit away on an unplanned tangent and another bit of a rant!)

Twitter seems to be my favourite social media platform, although it’s difficult to say what you mean in 140 characters. I often look back and think of all the ways my tweet could be misinterpreted. Maybe so-called degenerates like myself will be ousted by all those seeking to further elitism, mistakes and imperfections will not be tolerated – there seems a wave of expectation that the poor and dysfunctional and those of us not presenting a professional standard even in our personal and amateur use of online facilities should be excluded from the virtual world and perhaps even exterminated from the real one.

So back to these tweets and discontent. Like this tweet I put out, where unfortunately using the acronym for my clinically diagnosed and now lifelong medical condition, Myalgic Encephalomyelitis, might seem to infer that I referred to ME as if I have bowel cancer:

I don’t have bowel cancer, as far as I know. Although if I did, i could expect to suffer similarly to both my parents both who were only diagnosed just prior to the terminal stage and soon entering advanced  terminal stage. The NHS seems an impossible and devastating monster cloaked as ‘healthcare’ and rolled out to the world as an excellent standard of public service. I might well have skin cancer as I was diagnosed in my early twenties with some kind of benign deep basal something sounding cancer like and I could share the photo but it’s ugly. My general practise doctors in their roles as (nowadays computer) clerks don’t even enter my symptoms during consultation. Whatever I tell them I can expect no clinical examination and no desire on the part of health service providers to have any outgoings deducted from the income they receive from my patient registration. I have to expect to pay for letters and they refuse to provide any of the types of medicine known to be potentially beneficial in pain management or other types of symptomatic relief. I have to manage with whatever is available over-the-counter at the pharmacy or retailer. nutritional medicines are not funded by the NHS and although non-curative, they can be effective and supportive, but they can also be very expensive and can also cause harm if not used with caution and appropriate information-gathering for safe use. Exhaustion and oxygen deprivation similar to a mountaineer’s high-altitude sickness can make it impossible to function enough to demand my rights during appointments for the need to arrive. When unable to speak for myself for illness, my doctors can refuse to speak with anyone attempting to represent my needs on the basis of ‘patient confidentiality’.I suffer abuses at the hands of NHS staff (and other public service staff and those aware of my vulnerabilities) and it is legitimised by the treatment protocols in the denial of Myalgic Encephalomyelitis and the falsified evidence-base created through biased psychologised research and the preference for the Chronic Fatigue (syndrome) Strategy. At the same time exempted from all treatment options and service availability via that route for having a pre-existing scientifically founded diagnosis of M.E. (full N.I.C.E. Guidance 2007 – I wouldn’t wish for that guidance to be changed because it is proven that  treating M.E. via C.F.S. causes significant harm and I have a lifetime’s patient experience corroborating for myself that those things available for C.F.S. are very unhelpful for me – unless perhaps I were to reach a recovery state of 90% full health. I haven’t had 90% full health since just before and after my first child was born a very long time ago now.

ok, I’m calling it a day. No, i don’t mean I’m giving up the ghost! But this is a very imperfect draft. My (dis)content is this shitty first draft and I am giving myself permission to just hit the publish button. I’ll rub it the wrong way with some polish and make my content shine another day. i’m all out of elbow grease for today but thankful for my funny bones being intact!

Unfinished. To be continued. E.T.A.? some other day…

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One thought on “Social media (dis)content – ME and Mine , part 1

  1. Pingback: While unearthing my discontent |

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