Shuttlecocks and Shattering Shocks

BBC News: Is the new disabled work benefit working?

I don't hold out much hope for this programme tonight. I don't get a good feeling from this BBC preamble by Helen Grady.

An M.E. sufferer who is "one of the country's top wheelchair badminton players" and "a regular at live action role-play festivals"? Some mistake in the report? Some mistake in the diagnosis? I don't pretend to know.

Perhaps it's just my ignorance. I thought being top at badminton must mean you can do more than apply yourself in "short bursts". I know shuttlecocks are light pieces of equipment. Badminton isn't squash. But even from when I played it very occasionally years ago, before M.E.completely shut down my neuro-immune system, I know it's one heck of an energetic game. Far beyond anything I could manage now. Is it just because I'm now 50, having suffered M.E. in remitting-relapsing deteriorating pattern since at least my 20s, and the M.E. sufferer in the above-linked article is still only 27?

I sat talking to visitors today. Sat slumped, propping my head to help my neck to support it so as not to appear rude or bored. Two low-maintenance dear old friends this morning who did most of the talking. One dear old friend this afternoon, to whom I showed a slide show of photos on the laptop as we chewed over some family history brick walls, a shared interest that brought us together. My Mum even stayed long enough to make the tea for us to save me some extra "spoons".

Now I am utterly crashed. Head spinning. Throat hurting and hardly any voice left. Wrists too sore to type for long. Eyes blurred. Unsteady. Ears singing. Heart palpitating. Feverish and shivery. Nausea and pain making eating tea difficult. Forgetting my words. Exhausted to point I need to sink down right here on the carpet, if I didn't risk not being able to get up again. Hot and cold by turns because my autonomic nervous system is completely up the spout.

Even without badminton or any outing today, many things with M.E. are way out of bounds now to me. Co-ordination, concentration and strength to drive, for one (though diabetes type 1 with no hypo warnings rules that out in any case). Badminton or any strenuous sport, for another. Self-propelling myself in a wheelchair for yet another. Even carrying and using my walking stick is making my hands, wrists, arms, shoulders and chest unbearably sore this last week.

A dear family member, also diagnosed with M.E. much younger than me, who got treatment right away, does drive now, does some teaching and plays some tennis and does some cycling. So I know it's possible, in remission. But she is always aware of her limitations. At her worst, she has the huge frustration of knowing she can't keep it up, either safely, or at all.

I have to lie down, now. I can't say more about this today. I refuse to whine. I won't criticise. But I fear the backlash here, yet again, from people convinced that with full-blown M.E. we are all fit for the Olympics and driving from Land's End to John O'Groats on a regular basis. We are patently not. Not all of us. That's all I know. Am I living on a parallel planet? ATOS are sponsors of the Paralympics. Is this propaganda for them?

No doubt I need to shut up, rest and listen to the programme with an open mind, if  possible, even if with a pretty foggy brain!

I doubt after my little goals today I'll still have the concentration to listen reliably. Neither the concentration, the stamina or the heart. Not in Christmas week. Not when the tiniest unexpected, even delightful moment, can soak up the last bit of energy and health at my fingertips. Not while we're still reeling at the news that renowned and tireless diability rights campaigner Sue Marsh (if only poor Sue was really able to do all she does and not be made disablingly sick and tired!) joins the legion of genuinely very sick and disabled refused help: Guardian: Comment is Free: Sue Marsh: No disability living allowance for me. Nowhere to turn for many more

The description of tonight's programme runs:-Can You Touch Your Toes, presented by Anita Anand, will be broadcast on BBC Radio 4 at 20:00 GMT on Tuesday 20 December.

If I manage to listen to "Can You Touch Your Toes" with eyes shut and brain engaged, I'll try to blog about it later or maybe tomorrow to open a forum here for any reactions.

I began by saying I don't hold out much hope. But I still do. I always will. Or that really would be the end of the road.

Footnote: Having listened now, I really haven't much inclination to add to my comments above. Spoons are precious to all of us. My experience of M.E.bears little resemblance to what was implied on the programme. I can't speak for others.  That ATOS and the WCA is deeply flawed was clearly demonstrated, though. I'm off to practise for enforced work as a draught excluder. Night all. Tomorrow's another day.

The tragedy behind the casual cruelty of the WRB: R.I.P. Mark and Helen Mullins

The magnificent Sue Marsh of  Diary of a Benefit Scrounger was on TV tonight. Sue explained in her eloquent, passionate words exactly why it is vital that people hear the real human needs masked by the current tide of disability hate kindled by the BBC, the tabloids and broadsheets and by politicians across the board. Why the Welfare Reform Bill being bulldozed through by the Coalition Government is no more "fit for purpose" than so many genuinely sick and disabled citizens are, in spite of the flawed processes of ATOS and the DWP, realistically "fit for work".

Nobody can see what it might have cost Sue in health even to make it to the studio. Or the effect her efforts might have had on her own health afterwards.

Sue Marsh: Is Everyone Entitled to Welfare? on 4thought TV 

I left a comment about Sue's inspirational segment on "Is Everyone Entitled to Welfare" tonight (8.55pm Channel 4 8th November 2011)  on the 4Thought TV site:

"Sue summed up so well the real, urgent plight of those who are genuinely disabled and totally dependent on benefits for day to day survival. 1 minute 44 seconds seems short airtime to counterbalance the media's increasing bias against welfare recipients, but Sue made every second count, so thank you so much. The suicides in Bedworth announced today are a tragic illustration of the chilling truth behind Sue's words."

The suicides I refer to are unlikely to make the national news.* It doesn't suit the propaganda machine to reveal that a good, conscientious, loving couple like Helen and Mark Mullins from Bedworth near Coventry, felt they would rather die side by side then continue to starve and freeze. Or to be classed and branded on national TV as scroungers and pitiable parasites.

The propagandists would like you to believe most benefit claimants drive Bentleys, sail yachts, have houses abroad, swing the lead, or act like wheelchair using Andy to a duped carer like Lou in a warped sketch from some private "Little Britain".

Mark and Helen didn't even have a fridge or freezer. They made the handouts from a soup kitchen, to which they weekly trudged six miles on foot, last them all week, warmed up on a one ring stove. 

Bedworth 'suicide pact' couple found lying side-by-side 


Helen was told she could not work by Job Centre Plus. The DWP equally maintained she could not qualify for incapacity or disability benefits. Quick to cut and pronounce. Blind to suffering. Slow to plug the leaky gaps in their own systems that let the icy winds of poverty blow through the lives of innocent, vulnerable citizens. Numbers and tick lists instead of names and real people like Helen and Mark.

Please take a couple of minutes to listen to Sue. Then hear Mark, with Helen at his side interviewed last year when they had been stuck in the system without help for more than a year already. They do not strike me as people who were eager to beg or wheedle. So they chose the only other way they could see out of a Catch 22 situation. Tragically they are not alone. Nor will they be in future.


The uncertainties of inhabiting a human body means that anybody, even the most smug and self assured, may tomorrow find themselves in an identical dilemma.


Please reflect before you glibly dismiss millions of your fellow human beings as less than human and so beneath your contempt and concern. This tragedy is a memento mori for all who think themselves immune from sickness or crippling downturns.

Today self reliant and smug. Tomorrow a statistic in a bureaucrat's closed file.

* Update: 9th November - I apologise that I was wrong that this would get no national coverage. The story was actually picked up today by the Daily Mail Army Veteran and his wife die in tragic 'suicide pact' after becoming 'too poor to live through the winter'
and tonight on the Channel 4 news.