The M.E Myth

I find this idea another fascinating facet of sexism in the world we live in.

A friend of ours was asking my husband last week just why the UK medical establishment have been refusing to accept all the studies and data that prove CFS/ME are not psychological in nature. It’s a bloody great question and I think this is part of the answer. Money, in terms of grants is another part, of course.

Most people are shocked when you tell them that MS was considered exactly the same way until as recently as 15-20 years ago.

Medicine is an evolving knowledge just like other sciences and technology. What was ‘true’ 5 years ago isn’t true today and what is true today, won’t be true in another 5 years.

I believe that what I and others are doing by raising awareness like this, will lead to a definitive test and treatments in my lifetime. It may not be a cure but it will be an improvement.

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Screw M.E

Taken from the ‘Screw M.E Day’ Event Facebook Page:

“Screw M.E Day is a free online event which takes place on the Screw M.E page every year on the 28th of March – the ‘anniversary’ of my admission into hospital in 2010. It’s a day where we share silly photos of ourselves based around a theme (past themes include Mad Hatters and One Good Deed!). The idea being to get a break from all the doom and gloom surrounding M.E and just have some light-hearted fun! This year, our theme is Hugfest. It was voted for by followers of Screw M.E and takes into account the need for a theme that anyone can do, regardless of health and ability. To take part, simply take a ‘Hugfest’ themed photo and share it with us! The theme is totally up for interpretation, so don’t be afraid to let your imagination run wild! 😉…”

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Hello Strangers

Hi everyone, long time no speak! It has been just a little over a year since I started the blog but I have been silent for one third of that.

I’ve apologised many times for not keeping up the posts but I have got to a place where I no longer feel the need to continually apologise for my exhaustion and inability to be consistent.

I’m not saying that all is fine here but I am generally less anxious about letting people down. If people don’t get it by now they never will and quite frankly – fuck them. I think how I react when I know people are sick, in pain or dealing with a trauma and I realise, I deserve as much empathy and love as I try to pour out into the world.

All my worst nightmares came true when I missed my nieces wedding last August and much of the time since has been spent in recovery, with about 50% of my time being spent in bed and 50% semi normal days. I am currently up to about 4 days of getting up getting through a day vs 3 days of needing to sleep until at least midday. I have been focused on basic living and trying to do what I know works as opposed to putting pressure on myself to be a voice shouting for reform. I’ve even enjoyed one or two social things, which surprised me but made me feel ‘normal’ for a quick minute.

I don’t think it’s going to get any better than that, at least for now… And more importantly, I need to be careful to protect that progress and not slip backward. After all, it’s taken four months to get here.

Thankfully for me, again, the assessment that I went for in October and the DWP response afterwards was very sympathetic. They put me straight into the support group, which is for the most serious cases and means they don’t expect me to try to do any work related activities (though they know that I desperately want to). Also, because I’ve paid my National Insurance all these years, it means the help I get is not limited to just one year. They gave me a small increase in my weekly benefit allowance and advised that I may be entitled to PIP. TBH I’m too afraid of all the stories to apply for that and I’m ok-ish for the time being.

The horror stories you hear about these assessments and the cruelty with which he disabled people are treated by the assessors and DWP have simply not been my experience and that goes for every interaction. I believe that may well be because I live in Scotland, where you are only ever assessed by a health professional (as opposed to ATOS) and also simply because we are a kinder and more progressive nation.

Aren’t expectations a funny thing? All the horrible things that doctors and employers have put me through, when I expected them not to compared to the kindness of people in the ‘system’ when I expected them to be callous.

After watching Unrest and seeing the outpouring of people’s stories and the now many and varied blogs about our disease, I have struggled to know what to write about. Everywhere I look people are telling the same story as I am, every topic I come up with has been covered by many and much better writers than me.

Also, I am less angry, and I have less to say when I am not railing against the brutal ignorant injustices that people like me face.

I lost my voice. Both literally and figuratively as I had a nasty bacterial chest infection in the run up to Christmas. I just couldn’t think of anything original to say. There is nothing that hasn’t been said. I have no new angle to provide the aha moment.

I have also been a little more appreciative of those bloggers who try to keep their humour or their chin up. I realise that being angry and upset all the time is seriously exhausting. They have obviously been fighting longer than I and so learned this lesson sooner. But it’s all a journey isn’t it…

I have considered ending the blog, I mean, what’s the point if I have nothing to say and only post once in a blue moon? But I am reluctant to let in go. Its been a friend in a tough year. I hope it will still be a friend and we will journey on together until I reach my goal of 100,000 words, no matter how long that takes. But I won’t write for the sake of it. I will only write if I have something meaningful to say….

I do want to talk about my last doctor’s visit. That’s still a topic that’s burning in the back of my mind and sets fire to my guts whenever I think about it but that’s not for today. Today is for sunshine reflecting off the snow and wistful philosophy about the coming year.

Much love and peace.
Jo ❤