Tuesday, 24 January 2012

Toxic Tiredness (Part One) BBC Alba doc

Part One of 'Toxic Tiredness', the BBC Alba documentary on ME is now available on iplayer for 7 days. I was so nervous before watching (though not being filmed), but am pretty happy with how I come across, and also Dr Shepherd of MEA does a very good job, remarking on 'the major scandal for the medical community' in marginalising PWME the way it has (and does). Feedback online seems mainly positive, though some are saying that severely ill people - and I mean bedridden - are not represented and that is indeed true. I know the makers of the programme certainly wanted to include more severe sufferers, I guess they could not find anyone to take part? It's a tricky one, I'm not sure I would've wanted to be filmed - or could have been - when I was severe, it's a vulnerable place to be, but  unless you are close to someone who is severely ill, it's pretty hard to imagine: 'I don't think anyone can understand unless they witness it', as one of the contributors, a nurse, says. I also loved the comment by a GP, 'The more they push themselves, the more ill they become... it can take three days to recover from one bout of exercise... For the majority, it's a lifetime illness'.

Not nihilistic, not defeatist, just true.

I think everyone who took part is to be applauded, it's brave to put yourself on a platform for everyone to view (and judge!) and you don't know how you are going to be edited (which is really quite scary).  I'm not certain that everyone taking part has - or had - 'classic' neurological* ME  - but the conflation with 'CFS' - the lack of consistent criteria - is now an engrained part of our narrative; also, these are highly edited clips, and it is not possible to capture the full story (illness) of any one of us. At the end of the day, I can only know my own story.

Also, although no longer severe (I describe myself now as moderate with severe dips, I am typically housebound for at least half the week, with essential sofa/bed resting in between), I think  I'm fairly typical of the long-term path from very severe to moderate/severe - with many relapses - major and minor - along the way -  reaching a plateau that you just can't get beyond. I often think of the very severe phases like a grim apprenticeship that we all must serve, and it is utterly tragic for those who remain unremittingly severe.

Five different voices were heard, a sad tale of lives disrupted and broken - and, in one happy case,  mended completely, a young student. I've said before that it can take a decade to adjust to this illness, the shock of it all, re-adjusting to a different life, absorbing the impact. If I'd been interviewed when I was younger I'd be telling a different story than now - I've had *so* long to adapt, change my expectations, my hopes - but I still have my dark moments,  weeping at what I have lost: the photograph 71/2 mins in of me as a well 17-year-old had me in tears when I first watched, my mother too.

I was most moved by the policeman's story, he is the most severely affected of the other four and his ME  effectively 'ended his career' twenty years ago (he had never had a day off sick). I liked the nurse's description of 'an iron bar at the back of my neck, which someone was pressing into my neck' - I know that feeling so well - and also her description of the exhaustion as feeling like 'a busy day at the peats',  that's wonderfully poetic. I was also moved by both the policeman and the photographer talking about the excellent support they've had from their wives and children. I've said before this illness could undo you without strong family support.

I wasn't sure at first about the shaky camera going downstairs/outdoor shots, but the effect of being disoriented is good, it feels otherwordly, and what is ME if not otherworldly? (Incidentally, I had to keep sitting on a wall to rest for the walking scenes, just round the corner from me.) And I loved the mournful but gentle strumming in the background. So thanks, BBC Alba, for tackling the subject of ME in the first place - and letting people tell their stories.  I'm also glad that they included my comment about my ongoing anger at the psychiatric lobby hijacking a neurological illness (I saw it happen, ME flipped like a pancake, 'becoming' CFS in early 90s, almost a decade after my own diagnosis). Part Two is next week, I'm looking forward to Professor Behan,  he is not a man to mince his words. And also two of the people in Part One undergo Mickel Therapy, that is indeed going to be controversial. That is discussed a little here on MEA in the comments thread.

* Yes, 'neurological ME' is a tautology, but it is increasingly used by PWME to distinguish between neuro ME - the real thing - and nebulous fatigue syndromes.

** I was also thinking would be good if they could have filmed me the day after when I was shattered from the day before, it would have been a very different me, not dressed, post-exertional malaise (PEM) in action, just the usual. But I would be too vain, quite honestly, and the crux is: I have my book, my precious book, to tell it like it is.

*** I have just worked out where I appear if you want to re-watch: I am at the beginning and then at these intervals: 7.35 mins, 13 mins, 18.30 mins, 24 mins, 29 mins, 40.50, and at 48.50 mins I read from TsoM and talk a bit about writing it -  the prog did not include my describing  the *years* that took...


Alison said...

I wish I could watch, but it's "not available in my area" Thank you though for the summary and highlights. It sounds like the program is taking the right approach. A little worried about the Mickel thearpy thing though...

Cusp said...

Alsion I watched on FreeSat if you have that.

Thought the prog was really well -balanced and one of the best I havw seen about M.E. for such a long time. I really which it could be shown across the whole UK network. I also suspect that the reason people with severe M.E. are not on camera (think they are kind of represented by being mentioned and the severe aspcet being spoken about) IS because they simply arent well enough to bear cameras, filming etc which can be an exhausting process.

The aspect of terms (i.e M.E./CFS) IS part of the narrative, like it or not. We may as well acknowledge it e.g. my GP (and the rest in the practice) insists that he calls my condition CFS though I have been as ill as you Nasim: bedbound, inert, no life at all but bed and rest. There are troughs and peaks (well, mounds) and, like you I am moderate to severe with severe loomin always in teh background if I overstep the mark.

Well done my dear. You spoke so well and I'm looking forward to next week's programme x

Crafty Green Poet said...

it's an excellent documentary, well made, well presented, interesting and informative. You were excellent too! Congratulations! (As someone said on Twitter, you should be on tv more!)

sylvieromy said...

Very movng programme and very moving blog Nasim x

nmj said...

Thanks, everyone, yes, the consensus is it seems to have been a positive portrayal for PWME. My contributions are mainly about anger at the lack of belief, which is *so* important. Still, in a way I wish more could have been said about the disruption to my own life, the utter sadness of having it all snatched away, the catastrophe of ME punching its way in, my year abroad/Honours degree ruined, but because my perspective is of someone almost 29 years in, I seem calmer about it all, more accepting.(But my book says it all, anyway.) Also, I still have a lot of pain and neuro symptoms, even living such a slow-paced life, but of course that is not obvious, as someone said I look so well - and that is also a problem with ME, it is invisible.

Though when I was severe I looked like hell, clearly very ill. Yes, Cusp - when I said severe people are too vulnerable to be filmed, I meant physically *and* emotionally, it is just too much to have all the faffing and lights round you, to have to talk to people - and to be exposed to the public eye, literally and metaphorically - but at least we have films like Voices from the Shadows to represent severe.

Also, I think it may seem like I just decided to write a book and hey presto! it was done - they didn't include my description of the painstakingly slow process, but obviously there was just not time.

And given the state of ME(!) and the spectacular misrepresentation in the media last year - from PACE trial in Feb through to Wesselymania, which lasted all summer - we should be delighted that Alba has broadcast this.

Barry said...

As a fellow sufferer I'm so glad to have seen ME get some exposure in the media. Would be nice if it got similar exposure in the English and Welsh language media too (I'm Welsh). Still, it's a good start and I'm looking forward to the next episode. Anything that raises awareness is good.

You did come across well in the documentary. So well, in fact, that I'm about to order your book :-)

nmj said...

Just to say, I never refer to my illness as CFS, but I know very well that since 90s people with 'classic ME' can get a CFS diagnosis, and also, that people with the less catastrophic 'chronic fatigue syndrome' - the kind of fatigue that responds to GET and CBT - can get a diagnosis of ME.

As we all know, this confusion of criteria and definitions is a clinical/political morass, a diabolical mess.

At least in Scotland we are getting there, the Scottish Public Health Network has published a report on the necessity of distinguishing ME from CFS, but that is easier said that done, and how long will that take to trickle down? And the Scottish Good Practice Statement embraces the Canadian Clinical Guidelines (unlike NICE).

nmj said...

And, I am clearly referring to UK in above comment, I know, of course, that ME is known as CFS in USA.

nmj said...

You snuck in there, Barry, thanks, hope you enjoy book! My character Helen certainly captures what it was like getting severe ME as a young student in early eighties, pre-CFS labelling, but it was still no walk in the park getting diagnosed. And all the treatments I have tried are described - as experienced by Helen -I do not refer to these in the doc.

Giada Da Ros said...

My compliments. I watched 3 parts of the program on YouTube and I think you all did an excellent job. There are other documentsries on the topic, but this is the first made for television that I know of. I have my own blog on TV, Telesofia - http://telesofia.blogspot.com/ - and I will make sure to make a post in praise of it in a few days. Good job indeed. :o) As a sufferer myself, I appreciate it all the more.

nmj said...

Had no idea, was on Youtube, thanks for letting me know, Giada.

Butterfly2honey said...

Thank you for putting this link on your blog, I thought that you were really good at explaining everything. I have posted the programme details on to my support group. And will hope fully get a chance to put a wee bit in next months newsletter.
I can't remember if I told you the web address for my support group where you can find coppies of our newsletter. I also need to get around to finishing the article I'm writing for my group too. Will email it to you when it's done so you can read it before I print in. Take care Alex
oh btw Action for ME were asking about good book to read about ME & I sent them an email about your book & your blog.

nmj said...

Thanks, Butterfly, I know how severely ill you are, so I am glad the prog resonated for you. The feedback seems mostly v positive, but of course you can't please all of the people all of the time. I've seen complaints, here and there, and it really peeves me. I don't think some people realise how documentaries like this are made: you don't dictate an agenda, you answer questions - in an informal, conversational way - and the editor/producer/director decide how to shape the narrative - a lot of what I said was not used, I have no control over that (everyone who took part will feel the same). But this was a pretty damned good stab at the illness for the popular documentary format it is. I've said elsewhere the spectrum of ME from very severe to mild cannot be covered in one programme, and some people may like to remind themselves that I have had my severe - bedridden - years, I have been there, and I am just glad I am no longer in that hell, though dipping occasionally. Have you written about the book, I recall you were writing an article for your group, is that right, I am so sorry, my memory is appalling and my emails a bit chaotic, I will do a search, yes, pls do send to me what you write, would love to see. I should not be on laptop tday, my muscles in arms are twitching from overdoing it but I wanted to reply to you. x

nmj said...

I hope last comment didn't read that I had found negativity directed towards me personally re. Alba prog, just nitpicking in general, which was kind of beginning to get me down.

Still the most 'colourful' feedback has to be from my longtime friend and ex-bf who said: 'It was good, strange to see you squawking away in that kitchen though.'

And one of my wee nephews wanted to know why I was holding a tissue, which I had not even realised, I told him he should be a detective when he grows up.

Butterfly2honey said...

I know it's sometimes hard to not go on the computer, I've been over doing things a little, well actuall more than a little, as my mum had a new knee replacement 2 weeks ago, so I ended up doing a lot of running around taking her to the hospital and visiting her. As she didn't want my dad to go in to the hospital and pick anything up as he suffers from COPD and only has 30% lung capacity. I was worried about the operation & how my dad would cope without my mum as she is my dad's & my main carer. So I also got my dad to come over to my house or I went to theres to make sure all was ok.
Once you stop using up all the extra energy from whats going on it starts to hit you like a brick. So I'm trying to relax more but it's not easy as I also only finished filling my ESA froms earlier this week as its due at the end of the month, my DLA renewal has just come as well. You take care and when I've done the article I'll send it to you. Alex xxx

Kim Ayres said...

Hi Nasim,

Just discovered your blog and entry about the programme - I'm the photographer featured in the same one.

Like you, I found the policeman's story particularly moving.

Clearly I'm not the only one who found having a camera strapped to your shoulder and pointing at your face as you have to go for a walk, more than a little odd. It was chucking it down with rain when I had to do my bit - you can see me glancing at the camera as I realise the lens is getting splattered :)

Anyway, just thought I'd say hello and wish you all the best.

With warmth,

Kim :)

nmj said...

hey butterfly, yes, extra 'expenditure', leaves us totally ragged, we just can't sustain anything, am quite peeved at this muscle twitching - i lay on floor last night, i felt like jesus, arms outstretched trying to get some relief, i did find yr email from October! no hurries, just when you can...best wishes to your mum, my stepdad has had both knees done six/seven years ago and it has made a hell of a difference to him x

hey kim, lovely to see you here, i did not know you blogged, they sneakily told me about the 'lightweight' shoulder camera at the end, i did not know that was a plan! my flat is so small so could not really walk round flat, but the crescent just round corner is v scenic, like i say i had to keep sitting down, i felt dizzy and perhaps that is obvious as i look glaikit in those shots. at least i had a half sunny day!