Weekly roundup

Sorry I’m not writing much at the mo.  I’ve been really poorly and stressed to the eyeballs and simply not doing anything to write about.

The injustice of what’s happening at my Camera Club consumes me.  I am a very honest and true person and I can’t abide unfairness.  It strikes at the very core of what makes me me and I will fight to the bitter end to make the Club admit they’ve treated me badly.

Carrying on the theme of injustice, I had an email from a friend this week.  I love hearing from her, not only because she’s fun and intelligent and kind but because it doesn’t happen often.  She’s been bedridden/housebound with M.E. for over two decades and while in that time I’ve miraculously improved she, heart-breakingly, has not.  She struggles to speak and is in constant horrendous pain yet is allergic to just about all medications so can take nothing to help.  Eating is a daily battle and she weighs 5½ stones (80lbs).  Her GP surgery have basically given up on her and she’s too ill to travel anywhere else (when you live in  rural area there is one GP practice and that’s it).

We both know she has hEDS and most definitely needs to be fed artificially, but of course travelling to access an EDS savvy Rheumatologist is out of the question.  She also, most certainly, has MCAD but again getting diagnosed is impossible – she can barely leave her bed let alone travel to Sheffield or London.  I know, though, that if she could get diagnosed with hEDS her care would improve.  When you have M.E. no-one wants to know – there is still a huge stigma attached to the disease and you’re still treated like some kind of nut job whose symptoms are psychosomatic, and that won’t improve until a diagnostic test can be found.  There’s no diagnostic test for hEDS either, and no evidence it’s a genetic disease, yet we’re all believed without question and each symptom treated accordingly.  It makes me LIVID that these two diseases are looked upon so differently.

She has lived like this for over twenty years – her entire adult life.  She has suffered the tortures of hell but she is left to just get on with it, just as I was when I was bedridden.  My dog gets better care than she does and if I think about the injustice of that too much rage consumes me.

Of course, injustice in endemic in our society.  I live in the 5th richest economy in the world yet 8.4 million people in the UK are so poor they are struggling to afford to eat – that’s equivalent to the entire population of London.  And yet the UK wastes 1.9 million tonnes of food each year, of which 250,000 tonnes is still edible, and we can afford a Brexit bill of £100 billion while our kids go to school hungry.  We should all be protesting in the streets in our millions that our citizens are starving, but we are so used to unfairness that we just accept it.

I hope I live long enough to see scientists find the cause of M.E. and for my, and my friends’, decades of suffering to be acknowledged.  In the meantime I will fight my little corner of injustice with my Club with every ounce of strength I possess and can only hope the fact I have right on my side will influence the outcome.

4 thoughts on “Weekly roundup

    1. Jak Post author

      I know I’m a cynical old bat, but having been ill for more than a quarter of a century I’ve seen it all before. I hope it comes to something but atm I’m not holding my breath 😉


  1. Sarah

    I have ME too. I watched a programme where they found from people who had left their bodies to medical science, inflammation in the brain
    This makes sense as my ME really improved suddenly after being put on steroids. I know drs are reluctant to put people on steroids because of the side affects but when you’ve been bedridden for 20 years you would risk anything. There is another drug which I can’t remember that works like steroids but without the risk. It was at my rheumatologist appointment it was brought up as they wanted to get me off the steroids. Maybe she could ask for a telephone appointment



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