Here we go round the mulberry bush...

Landline rang this morning just after ten.

Hate landline as I don't know who it is till I pick up. So can't get myself prepared with necessary info. On landline I often end up gabbling like an idiot and forgetting what I need to say through brainfog. Plus it's usually going to be some telesales pusher who's got past the Telephone Preference Service filter.

It was the secretary at the Diabetic Eye Screening desk. Same one I rang last month after I received a letter to say I'd had an earlier letter inviting me to make an appointment at the Diabetic Clinic for screening. I hadn't had any such letter. This letter I did get, said records showed I'd not had a screening with an approved optometrist. I had; the ophthalmologist at the same hospital which the Diabetic clinic had themselves referred me to after picking up some retinal bleeds about three years ago. I've been going to this same optometrist regularly several times a year since that referral.

So I had rung a few weeks ago to ask if I needed screening as well. This same receptionist had said then that this had arisen because they had had a letter from my GP to say I'd been discharged from the Ophthalmologist back into the screening system. The bleeds had gradually healed themselves but, as I'd pointed out, I had just got a new regular appointment through for this week in Ophthalmology. The GP obviously knew of some mythical discharge letter from Ophthalmology that even they didn't know about, since they'd just called me for another regular check-up.

On Wednesday, at said check-up, I'd deliberately asked the consultant whether his tests, looking at my retina, the Optical Coherence Tomography and other tests still counted as my "diabetic eye screening" (how could it not?). But he said I still needed to see the diabetic eye screening guys. OK.

So, I dutifully stood corrected and rang the receptionist back yesterday to say their letter was right after all, and please could I make an appointment with their screening programme at the diabetic clinic again? She said she'd need to talk to the ophthalmologist's secretary, as Ophthalmology now had my notes, and she'd send me an appointment for early December.

Follow?  Me neither. But, "Patient Fully Compliant", in the words the pharmacist once wrote on a form when doing the yearly review of all my medicines. (Or "Fully Complaint" as she actually put!).

So today, this phone call from the receptionist. She apologetically explained that she had indeed spoken to the Ophthalmologist's secretary, who said that as I had an appointment in another four months with him, I did not, in fact, need to be seen by the Diabetic Eye Screening as well. That would be just doubling up all the tests. As I'd thought from the start. There's a limit to how many duplicate photos of the back of my eyes they actually want!

Confused? I began to think maybe for a change I'm the only one who isn't.
Common sense told me from the off that the Ophthalmology was doing the lot now (remember it was the Diabetic Clinic during routine annual screening that referred me there originally!)

But common sense is no match for expensive computer systems that seem unable to pass a message from one hospital department to another in the same building. Common sense is a stranger when consultants say one thing while their secretaries struggle to follow what should really be happening.

Common sense isn't worth a bean in the tide of automatic mailings, wasted phone calls, paper and time. When the GP seems to be getting paperwork that bears no relation to what's happening up the road in the various hospital departments and clinics! We wonder why there's no money in the N.H.S.!

At least after hours of waiting, the consultant found no oedema in my retina after ultrasounding it in the O.C.T., in spite of some further deterioration in my vision this time.
It's crashed me M.E.-wise but retina-wise, not doing so bad for my three decades with diabetes!
Now just waiting to hear from Cardiology...

Hypo versus Heart Monitor in the wee small hours!

Starting to ignore some more minor heart flip-flops through the day as I don't want to run out of diary or look like a hypochondriac if this this turns out to be "normal" arrhythmia I'll just need to put up with!

Documenting most of them, though.

Boy, these attached electrodes are pretty heavy duty! Woke at 3.45am bathed in sweat, rigid, jerky, disorientated. My PJs were visibly saturated with hypoglycemic fight-or-flight sweat. I'd already had a little sugar and carbohydrate to raise a borderline 3.9 BG before bed to stay safe. It was then up to 8.8 so not entirely happy it did one of it's periodic plummets just a few hours later. A BG test winked an alarming 1.5 in the dead of the night. Not so alarming to me, after all these decades. I imagine professionals would have me whipped into hospital or at least have paramedics at hand if they saw the same, going by the book.

I had more jelly babies (instant sugar fix kept handy wherever I am.) Then crawled down for a couple of plain digestives (20g carb). I was so wet from hypo sweating I was totally amazed the heart monitor electrodes were still attached so firmly and not washed away in the drenching! By then I had gone from sweating to shivering, sore and even more trembly and jerky. That's when I'm "normal" with M.E.! I remember being most concerned not to let the heart monitor drop when trying to manage the emergency drill. I suppose that's why the NHS is right to put faith and funds into a piece of equipment which can cost £1,900 according to this site: BMA Medical supplies LifeCard CF Holter Monitor !

Slept a little, exhausted, by dawn and now feel like death minimally warmed up. I do think it's perhaps the best thing that could have happened, though, on sober reflection, as my heart flip-flops its way through the morning. These palpitation symptoms, along with the accompanying odd, faint, nauseous feelings at times, were relatively unnoticed apart from maybe imperceptible racing during the worst of the hypo. My chest only resumed giving its little flops and "electric" tickles in the aftermath.

At least with the Holter monitor in place, it may actually be possible to get to the bottom of these problems.
It goes back tomorrow to the local Cardio department, so need to rest up properly after all that lonely early hours drama. Need to save up some energy "spoons" to be able to get through that plus a diabetic eye screening tomorrow afternoon. One return bus journey only for the both, so still think that's another fortunate turn.

Maybe at the end of all this, we'll actually have a Cardio/Diabetic/ M.E. understanding vibe going on. Or maybe the light-headedness has made me even more stupidly optimistic than usual!

Have a heart! Yes, I do!

Well, I definitely DO have a heart. It's official!

Had my echocardiogram this morning at hospital, followed by being fitted with electrodes and the 48 hour ambulatory heart monitor (Holter tape).

With M.E., just making the bus journey at a fairly crowded, early time of day was more stressful than the whole hour long visit to the quiet, restful Cardiology suite! I was shivering cold on the journey in, sickened as usual by the motion, noise and light, my body struggling to regulate its temperature. But the journey is only ten minutes, so I'm very thankful for that! As usual, my mum stayed over to make the trip with me, helping by carrying bag, stick, coat and cardigan when needed! She really is such an angel in every awkward health situation. (Not to mention saving the taxpayer endless money in Carer's Allowance/DLA as she appears when most needed and asks nothing but love!)

On arrival at Cardio reception we were shown into the waiting area. Only two male patients waiting to be seen before me, so managed to spend the time resting and recovering with my eyes closed mostly.

Only about ten minutes after my appointment time, I was called in for the Echo. The lass operating the equipment got me to strip off above the waist while she got ready with another young woman at a computer screen outside the curtained-off couch and echo machine. Sporting my fetching hospital gown, (soon unlaced again to allow access to all areas!), I was to lie on my left side on the couch, right hand resting on my legs, left supporting my head.

By now, to be honest, my head was spinning a bit. The most difficult thing was probably maintaining that slightly uncomfortable positon without giving the impression my unsteady discomfort was in any way attributable to the very capable and efficient echocardiographer! I managed a few jokey comments along the way, but spent most of the time with my eyes half closed trying to put all my energy into maintaining my position and keeping still and quiet for the scan (i.e. without twitching or keeling over!)

This was the standard Transthoracic echocardiogram. It was a cold autumn day for icy gel to be applied, so a good connection would be made between the hand-held transducer and my hot little chest!  My muscles are so sore with the M.E. that the first contact with the business end of the transducer was rather painful. I was honest about it when the operator asked, but assured her it was me being tender, not her being heavy handed! The high frequency ultrasound waves pinged through my upper chest before the transducer was moved to underneath my left breast in several positions to view the heart from different angles. These sound waves bounced off the hidden corners of my heart. The glugs and roars audible from time to time convinced me it was still beating!

Then I hauled myself back over onto my back and the transducer moved to the top of my stomach/between my breasts and finally onto my neck with raised chin. These last few places are the ones where my current palpitations are most often felt. I must have had 3-4 heart "skips" during the whole process. No idea if these showed up or not till I see the consultant again.

Then this part was over and I cleaned up the copious amounts of jelly from my torso. Only need some custard to go with it, I joked feebly. I found the bit I'd missed near my throat when I put my jumper back on. I could see the missed gel seeping through then, as if I'd dropped my breakfast down me!

Back into the waiting area where my mum was sitting like a pack horse under a mound of my cast off belongings and outer clothes necessary for a cold draughty bus ride. She was talking to the wife of another patient, similarly burdened by her husband's outer garments while awaiting his return from the land of mysterious beeps.

 A few minutes and I was called into another side room for the fitting of the 48-hour heart monitor. You can see the equipment used, if you haven't had the joy of this procedure before, in the accompanying photos in this blogpost.

The lovely nurse who called me through fitted the electrodes while another younger nurse helped to explain and do the paperwork. They were very helpful indeed. Although the department normally asks for the monitor to be disconnected and returned to Cardio Reception between 8.30am-9.30am on the third day, because I have a diabetic ophthalmology appointment on Wednesday afternoon, they were more than happy to let me drop the monitor off later when I'm in the hospital for that. This was such a blessing and relief, as it means two sickening, exhausting bus journeys saved in the same day which would have probably knocked me out for the rest of the week.

I've got a spare set of electrodes in case the originals get wet or detached. I've an A4 sheet ruled as a diary to record date/time/activity/symptoms. Whenever I feel the palpitations, or any breathlessness, dizziness/faintness or chest discomfort, I simply record the time and symptom in the diary, also pressing either the yellow or green buttons on the monitor to make it easier for those analysing the tape to spot the relevant moments recorded. All simple. Even the electrodes are colour coded in order of placement on the body - like traffic lights. Red on the left lower chest side, yellow on the upper right chest and green on the right side of lower chest. Even having trouble with telling your right from your left, the diagrams should keep you ticking over!

The actual monitor itself is as light and small as a mobile phone and clips easily onto the waistband of trousers, skirt etc. The wires tuck away discreetly and the electrodes itch from time to time but are hardly noticeable.

I'm completely frazzled now. Hardly surprising! All this and a phone call on my return, from a good friend not seen since I was working full time as a minister on the South Coast has left me struggling to put one finger and thought in front of the other. There'll not be many "activities" on my diary page for the rest of the day, I reckon!

I'll keep you posted! They'll book me a follow-up session with the cardiologist after the monitor's returned on Wednesday. Hope this'll help reassure anybody going through similar.

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.  

Ricky Gervais using Humpty Dumpty language?

“I don’t know what you mean by ‘glory,’ ” Alice said.
    Humpty Dumpty smiled contemptuously. “Of course you don’t—till I tell you. I meant ‘there’s a nice knock-down argument for you!’ ”
    “But ‘glory’ doesn’t mean ‘a nice knock-down argument’,” Alice objected.
    “When I use a word,” Humpty Dumpty said, in rather a scornful tone, “it means just what I choose it to mean—neither more nor less.”
    “The question is,” said Alice, “whether you can make words mean so many different things.”
    “The question is,” said Humpty Dumpty, “which is to be master      that’s all.”
    Alice was too much puzzled to say anything, so after a minute Humpty Dumpty began again. “They’ve a temper, some of them—particularly verbs, they’re the proudest—adjectives you can do anything with, but not verbs—however, I can manage the whole lot! Impenetrability! That’s what I say!” <sup>*

Just reading an article in today's online Guardian Culture Section Ricky Gervais: "Bring on the Haters"

How like Humpty Dumpty's stance on semantics Gervais' own perception of the controversy over his use of certain offensive words is.  


I'm not a "hater". I've probably cried with laughter at "The Office" as much as anyone. But I know the "in real life" derision and misperception fostered by his previous jokes about M.E. He joked at one stand-up show how he'd seen someone collecting for M.E.:

-M.E.? Not MS - not the crippling wasting disease. No, the thing that makes you say 'I don't wanna go to work today'.

There was a genuine M.E. sufferer in the room that day. She had to endure the humiliation of the whole room applauding and exploding with laughter at what was, whether Gervais would admit it or not, her expense and the expense of all M.E. sufferers who face the very ignorant attitudes being celebrated and reinforced in the said joke.


Then, recently, we have the outrage caused by the comedian's latest tweeting of an offensive word used to belittle people with Downs Syndrome. Gervais claims he has it on his own authority that the word has changed its meaning. 

Many have challenged him. Yet even in this latest article, all but the brave mum of two disabled children with whom he deigned to discuss the matter, are now labelled as his "haters". Again he paints himself as the hero and victim of the sphere where he dreams he has rewritten the rules of meaning. A tiny world focused away from empathy, compassion and any sense of connection with the lives of others more vulnerable than Mr Gervais.


As his new series' title says: "Life's Too Short".


Life's too short to forget your humanity and the responsibilities that go hand in glove with the rights of free speech. Otherwise, you're just like Humpty Dumpty in his sneering superiority that a word means what you "choose it to mean - neither more nor less". Life's too short to forget that words belong also to the hearer once they are spoken or written. Every mystified, indignant Alice can challenge you then. You can go on believing your own propaganda of course. But it doesn't save you from falling off the wall.</sup>

Panorama "Britain on the Fiddle": Straining out a gnat and swallowing a camel?

I was so incensed at the biased and inaccurate Panorama "Britain on the Fiddle", aired tonight 8pm BBC1, I sent a letter of complaint to the BBC.

BBC1's Panorama: "Britain on the Fiddle" 8pm 3rd November 2011

I was too sick to complain after John Humphrys' grievously patronising and offensive program on a similar theme last week. I used the few spoons I have left today to speak out. After all, the only thing needed for evil to triumph is for the good to do nothing. I'm not good, but evil mustn't be allowed to thrive unchallenged like this on national TV.


It breaks my heart to read all the despairing, hurting tweets, blogs and sobs from fellow disabled citizens of Great Britain on the social networks tonight.


We still have each other, and knowing others are in similar situations of being falsely branded cheats and fiddlers is something that keeps me strong in dark hours like this. My dander is well and truly up! Me and millions like me, eh?


This is what I said:


To: panorama.reply@bbc.co.uk


Subject: Re : Britain on the Fiddle, 8pm-9pm, BBC1 3rd November 2011

Panorama tonight (“Britain on the Fiddle”) was a travesty of all that I believed the BBC stands for.

Do we pay the extortionate license fee in order to have your so-called researchers peddle the government’s propaganda against the sick and vulnerable?

Does our license fee buy us the privilege of sitting through the drivel honed to incite disability hate crime I saw tonight and last week with John Humphreys’ appalling contribution to the anti-disability jigsaw you and such as the Daily Mail seem set on perpetrating?

I am incensed that such lies go unchallenged on this prime-time programme. I am disgusted that it is left to ordinary viewers such as myself to point out the errors here.

Who convinced the BBC to make another programme about benefit cheats? Did the DWP tip you off to a handful of cases so you could strain out a gnat and swallow a camel? We all know such people exist and agree, of course, they should be dealt with. What has kept them unchecked at liberty till now but slack and self-serving government departments?

However, sickness benefit fraud, according to the DWP stands at 0.5%. It isn’t “on the rise”. Of the £22 million lost by the government to fraud and error, only 4 million is accounted for by such cheats. The remaining £18 million is , as I understand it, lost through the errors and incompetence of the departments administrating benefits themselves. The government overpayments are costing the country more than sickness and disability benefit fraud put together. When can I expect to see your expose on that? Given your obvious bias and spouting of coalition propaganda, I am not holding my breath!


Am I to take it my license fee pays for you to choose to ignore real issues like this, in order to make Mickey Mouse knee-jerk programmes like this, which serve only to fuel unwarranted contempt, indignation and hatred against innocent citizens who have fallen prey to life-crushing disabilities and unemployment through no “lifestyle” choice of their own?

The cases you so gleefully paraded on this disgusting excuse for investigative journalism are, as you wholly failed to emphasise to your viewers, rare and extreme.

In the wake of your “documentary”, which documents nothing but your Corporation’s forelock-tugging to the powers that temporarily be, the 5 million disabled people who fight every day not only against the humiliating odds stacked against them in this weakest-go-to-the-wall society, but increasingly against the misrepresentation of their situation you are currently churning out to your ultimate discredit, are prey to terror they have neither courted nor deserved thanks to your casual cruelty.

I hope you feel no satisfaction in sinking to this level. I trust when one day you or yours are trapped by genuine disability and unable to escape into these fairy tales of Britain en masse “on the Fiddle” (the clue is in your title that this is exaggeration and, frankly, something far short of the truth we once trusted you to broadcast), you will not regret the degree of hatred you have fostered for people just like yourselves.

Disgusting. Shame on you, BBC.

Just received the automated response from Panorama. Sadly, the reply they promise if my email "requires a response" will be too late. The programme is now out there. The damage, distress and grief they have caused are spreading like ripples in a poisoned pool.

I hope they can sleep. I'm not sure I can, insomnia, discomfort or not.

 

Shhhh! Do you want to know a secret? We all do!

The Official Secrets Act: strange bedfellow for M.E./CFS?

This disease has robbed me of my prime of life: why do you want to keep me in the dark? 

So much for the Hippocratic Oath. So much for integrity! 

The lunatics have taken over the asylum!

The disgusting corporate secrecy about M.E.

I've just reread this information from Invest in M.E. after quite a while trying to save spoons by not reminding myself of the depth of the baffling injustice here. There's still a dent in the wall from last time I read it! Nothing's changed.

Tweeting with a friend about it today, I realise I am no nearer to having an explanation.  Why this sickening, perverse secrecy about the physical illness that has robbed us all of chunks of our lives and left us prey to every sling and arrow from the disability haters and arrogant welfare reformers who believe their arbitrary time limits can spirit away "chronic conditions" that medical science has yet to cure?

Why oh why do the Medical Research Council even have "secret" files on M.E./CFS? How can they possibly justify sitting on them, invoking the Official Secrets Act, till the 2070s? It's like something out of James Bond, only without the glamour and blockbuster theme music! I am still shaken, and very much stirred.

This article points out that the secrecy seemed to begin when the discredited psychiatric lobby came to prominence with their touting of CBT/GET to torture us and convince the world we are malingering fugitives from bedlam and the workplace.


One alas-not-so-secret document quoted, the 2007 NICE Clinical Guideline, trots out the old CBT advice: " “The first duty of the doctor is to support as much useful function as possible and avoid the legitimisation of symptoms and reinforcement of disability”.




You don't need to "legitimise" what was never illegitimate in the first place! Life-crushing disability descended willy-nilly without any need for reinforcement!

 I can only conclude that, as the psychiatric lobby realised with rising panic and horror that bio-medical science was about to reveal the organic multi-systemic autoimmune mechanisms in M.E., so consigning their frankly flawed analysis to the dustbin of historical dead ends, they marshaled all their weapons to keep the "truth" in their pockets.

☞ Hence Simon Wessely's flirtation with with stardom as darling of the press this summer. 

☞ Hence the mockery and disbelief that seems still to be sanctioned about the illness.

☞ Hence the postcode-lottery-think-of-a-number-and-double-it Russian Roulette we face of getting health professionals who even understand, let alone help and treat us in an enlightened way

☞ Hence the obscene clampdown on these unseen M.E. documents until most of us are conveniently dead and beyond redress.

Disclosure would not suit the egregious oafs who refuse to back down, apologise or admit they were wrong or minimise all the damage they have caused to so many for so long.

Or am I wrong? Have you a different explanation? Have you a fresh insight on this? I'd so value hearing from anybody else who perhaps can throw any further light on this, or just needs to express what they feel about it.

"The law is a ass - a idiot!" says Dickens' Mr Bumble in Oliver Twist.

The law is erring on the asinine side here, I suggest. But what do I know?


But time's not on my side. And, perhaps mercifully, I won't get a chance to "only live twice!"