Bus Stop. Bus? Please stop!

The 19A runs past my house, though wasn't one of the buses involved in my journey today!

 
'Art has to move you and design does not, unless it's a good design for a bus.' - artist David Hockney

What's your experience of ME/CFS on public transport on the days you feel able to use them? If you feel able? I completely understand, as in my own case at times, that some friends with this illness are far too sick and housebound/bedbound at the moment to even dream of venturing on a bus.  I've been there, and on many days, still am!

Ron Mueck (Australian, b. 1958). In Bed, 2005. Mixed media, 63 3/4 x 255 7/8 x 155 1/2 in. (161.9 x 649.9 x 395 cm). Private Collection

Other days when I feel a little stronger, and if I'm blessed enough to have my Mum to help carry things and support me, I do tackle the odd bus journey. The shorter the better, as even a trip lasting a few minutes can turn the ground to a quagmire of wriggling nauseous blur to me! These days bus journeys can be one of the most draining and nerve-shredding ordeals in a day!

I should explain I have never driven. My pre-M.E. me rode everywhere by bicycle, or walked miles on foot, or used public transport. This is mainly because I prefer to tread lightly through the earth, leaving it as I found it, if possible! It's also because, with my lack of hypo-awareness from my very earliest days as a diabetic, driving would be tantamount to suicide, or worse, potential murder of other innocent raod users! I have never for one second regretted this choice. I have always embraced the alternatives with enthusiasm!

Since M.E. struck, my lack of strength, co-ordination, reaction times etc make the prospect of driving even less feasible.  Believe me, the world should count itself very fortunate I'm not on the tarmac behind a wheel!

Yesterday I noticed to my chagrin that the 'dusty stain' I thought had appeared on the toe of my only pair of comfy flat shoes was, in fact, the sole parting company with the upper. I have been wearing them almost non-stop for the past three years, after all! Fashion victim I ain't!

Worn out shoes - not the author's own, folks!

So today, I knew I really needed, with my Mum here as usual for the weekend to support me, to travel into the local town to buy a replacement pair from the helpful, relaxed local shoe emporium. (Brantano in Parkgate Retail World, Rotherham, I do love you!).

Managing to drag my rickety excuse for a body to the bus stop in my village, (boy, those legs and that chest did ache and weigh a ton today!), I waited for the first bus into town with my Mum carrying the bag while I juggled my walking stick and oversaw the shaky interface between my feet bones and the pavement.

The bus approached. It was evident this journey wasn't starting well. The boy-racer driver, seeing the crowd of passengers waiting with hands extended to hail him, screeched to a halt several bus-lengths beyond the stop. We moved along to catch him up and boarded, thankful at least that he had stopped at all, and not overshot our stop altogether and ended up in the next county.

At every stop, the same thing. Brakes slammed on at the last moment. Everyone thrown forward as if in the belly of a vomiting whale. An elderly couple got on, with some difficulty. The driver swerved away well before they got to their seat. That's surely not in the "how to drive a public service vehicle" manual, but happens so frequently, it's like a sport to certain drivers! How many passengers and pedestrians can I shake up without actually maiming them or losing my license while they lose their lunch or at least their balance?

I arrived in town at the travel interchange with every sinew sore and shaky. I guess the able-bodied passengers felt shaken too, if not stirred! 

The sound in the bus station was unbearably loud, funnelled into my ears in a distorted way. Luckily there was a comfy place to rest before embarking on the last stage of the journey, a five minute ride to the out-of-town shopping centre where the shoe shop is.

That too had the square wheels connecting with every pot hole and kerb edge in South Yorkshire! The seats are hardly adequate unless you have the posture of an ape with curvature of the spine. That's how I felt when we emerged, thankfully in one piece (more or less) at our destination.

The staff of the shoe shop itself were wonderfully helpful and accommodating as always. The atmosphere in there is quiet and unhurried, with loads of places to sit and recover. No fussing staff or intrusive music. That was the best part of the day, and I was fortunate to find a pair of comfortable flat shoes, pretty similar to the pair that had been like a second skin to my poor old feet for so long. Cheap, smart enough for formal and casual enough for everyday.

The actual shoe purchased!

The return journey, after further rests and recovery from a diabetic hypo brought on by the enormous outlay of energy this all took, wasn't quite so frenetic as the outward bound one. Still bumpy of course, shrill with kiddies' squeals and short tempers after a day at the shops in the summer heat, giddy and sickening but survivable.

As usual, the last few feet back to my own front door were navigated over ground that felt as unsteady as liquefaction in an earthquake, with every muscle and cells shrieking for rest.


Do other ME/CFS friends have the same dread of public transport's foibles? It can take me days or weeks to recover now from going through the vicious mill of a bus's innards. How about you? Please let me know! 
I'm off to lie down in a darkened room! Catch you later!

Author's actual head. Skull and swollen synapses included!

Taking the P*ss?

First it was the unfortunate French actor Gerard Depardieu publicly humiliated by wide press coverage of his getting caught short on a flight to Ireland earlier this week. 


Gerard Depardieu apologises for plane incident




Then today, the spotlight falls, not without reason this time, on the bathroom habits of UK Conservative MP and Work and Pensions Secretary Iain Duncan-Smith.

I am grateful to that gracious and inspiring human being, Stephen Fry, one of the most avidly followed Twitterers, for bringing this to my attention with a tweet earlier today. Me and about 2,979, 706 other followers of his at the current count!

The link is to the fantastic "Broken of Britain" blogspot which tells this story in full from the point of view of the disabled person in a wheelchair who had to make the distressing wait for Mr Duncan-Smith to emerge from the facilities prioritised for those for whom they were, after all, originally and specifically designed!

Iain Duncan-Smith and the Disabled Toilet incident 

As somebody with an invisible disability, I know how hard it can be to feel comfortable using things designed to help the disabled in public. In my case, this is often the priority seats on buses.

I almost always use a walking stick in public, as the ground can switch to rubber cake-walk mode for my weak and easily exhaustible muscles and nerves even on those "good" days when I can get out at all.

Buses invariably leave me frazzled and exhausted. I don't always head for those seats allocated to the disabled, to wheelchair uses, the elderly or people with pushchairs. I like to feel "normal", naturally, whenever I can! I hate being conspicuous! 


But on some occasions, when my knees have been practically buckling even with the support of my stick (days when even the vibration between stick and my sore wrists seems hard to bear), there are times when those seats close to the front of the bus are really needed and appreciated. I am usually with my Mum on those occasions, and she too, at 80, counts as "elderly" (don't tell her!) and with a valid claim to these seats.


My point is that usually, people will jump up to let you sit down (this IS South Yorkshire, and most folks on public transport are very helpful and fellow-feeling in my experience.)

But others gladly leave their legs trailing in gangways, their feet on adjoining seats and look affronted at these intruding "needy" folks  to whom they are supposed to give way. Perhaps today, with the media's constant haranguing and demonising of the sick, fellow passengers also look on every disabled person as a thief and a faker, too? I won't get that paranoid, though. Then we'd all be the losers!


I wouldn't wish Gerard Depardieu or Mr Duncan-Smith, or any other person in need of urgent relief to be humiliated in doing so.

But in the case of Mr Duncan-Smith, a man whom the country trusts (?) to take on board the position of the disabled, hopefully the reaction to this incident will make him think twice, and remind others that disabled facilities are not just there for decoration or political correctness!

As Kaliya Franklin, co-founder of The Broken of Britain blog that exposed this rightly says there:


'Given the minister’s commendable desire for everyone to be held responsible for their personal behaviour through community service, sick and disabled people will expect the punishment to fit ‘the crime’.'

Feeling As Rough As Hetty Pegler's Tump!

 Feeling as rough as Hetty Pegler's Tump, today.

This is when lying flat, birdwatching through the bottom of the conservatory doors, comes into its own as a useful low-energy and non-challenging hobby (plus favourite music for when eyes need closing, of course!)

Funny what things come into your head when you don't need them. Into my bottomless well of trivia, at any rate! 

Funny what vitally necessary words escape you, too, when brain-fog descends. Or what incorrect substitute words come in to masquerade as logical and make your conversation into semi-gibberish. Not that people usually notice, in my case! They're used to my less-than-linear modes of expression, even at the best of times! 

I've always fancied visiting Hetty Pegler's Tump, just on the basis of that fantastic name. First came across it in a book about UK places of historical interest when I was a child.

Why it flashed into my head as a nonsensical metaphor for the way I was feeling today, as a result of the painful, draining effects of M.E., I have no idea! But it got me giggling, and a few friends with me, when I said it!

It's actually a Neolithic long barrow in the beautiful countryside of the Cotswolds in Central England if you haven't come across it! Why would you have, unless you share my obsession for the bizarre or for English history?

Sad to confess, I haven't actually been there in person yet! Shame! English Heritage's loss and mine!

But it made me smile, just recalling the name, on a day when I haven't any spare energy for doing much more than slump and weave those pinwheels and rainbows of sense and serendipity together. See my other blog at Jobiska's Pinwheel with its unfocused smorgasbord of bits and pieces from my imagination and varied interests if you care to! If you fancy a wander and you've got the appetite for a meander through my obsessions and other facets of my life!)

Just for the record, I've no evidence that Hetty Pegler's Tump is actually rough, at all. Any more than Neolithic stone long barrows usually are! I'll leave it to your imagination as I go off for a bit of a rest!

Hope at least the name made you smile today too, whether you're feeling rough or not!

 

View of Hetty Pegler's Tump near Uley in rural  Gloucestershire, UK

 

 

 

 

Stormy skies over Hetty Pegler's Tump

Inside the longbarrow: feeling rough or maybe claustrophobic? Not for long, I hope!

 

Please stop by and help give M.E. sufferers the chance of a future

You're busy? You don't have a lot of energy "spoons" to spare? 
This only takes a few moments.


Please sign this petition if you feel you can.


It calls for funding into bio-medical research into M.E.  
Not wasting funds on the psychological lobby or big pharmaceutical conglomerates with their own agendas.

The definition of M.E. as a neurological illness as classified by the World Health Organisation is widely acknowledged. However, why is the funding in the UK given to the psychiatric lobby and NOT into clinical or bio-medical research? Is it because this area is monopolised by those with particular vested interests?


Here is the petition: it will take a couple of minutes at most to sign. You can do this from the site itself, or simply log in from Facebook or Twitter.


38 Degrees Petition calling for Bio-Medical Research into M.E.

Here is what I wrote as my comment as I signed:

'M.E. is physically crushing to the lives of children, young people with all their lives in front of them, and hardworking men and women who suddenly have the carpet of health, life and livelihoods pulled out from under them in the misdst of their active plans, joys and dreams. Please don't crush us further by the outrage of calling this merely psychological. Bio-medical research is the only way to unlock this prison so please let this be the path taken in future.'

Please do what you're able and bless you for taking the time. 

 

The Truth Is Out There!

The Truth Is Out There. The Truth About M.E./CFS/CFIDS.

But some powerful bum steers have hit the tarmac with a bigger bang, since last I wrote.


Did anybody else notice how soon after the news of Dr Myhill's exoneration of all misconduct charges by the General Medical Council, the pernicious nonsense peddled by Prof Simon Wessely hit the papers? Of course you did!


BBC News covers "victim" Wessely


Daily Mail covers "victim" Wessely


The Economist (where will this end???) covers "victim" Wessely


Top News US covers "victim" Wessely


Visit Bulgaria covers "victim" Wessely

Top News New Zealand covers "victim" Wessely 

Followed up by the slack journalism in the Times by Stephanie Marsh on Aug 6th 
Doctor's hate mail is sent by the people he tried to cure 

and the hackery of Rod Liddle on 31st July with his dismissively mocking
Shoot the medical messenger - see if that'll cure you

So that's pretty much worldwide coverage, then. Raising awareness of M.E.? Sadly, for all the wrong, mistaken reasons. How now to explain all this to friends, neighbours and strangers who have taken this new story on board over their cornflakes, I can't begin to know. 

Happily, most of them already know how little this is a state of mind, and those who knew me before I was ill, understand how the physical illness I fought for years finally took its worst toll, thriving on my opposition to lying down under its tyranny!

A few calculated words from a man who knows full well that time will prove him wrong, and has all the painful fight for M.E. research been swept away in a tide of headline-grabbing rhetoric and half-truths?

A drop of misinformation in already muddied waters. The ripples from this one have gone far indeed!

Amazing how, suddenly, all the decades of research on the physical causes and deeper understanding of this crushingly painful, debilitating neurological multi-systemic disease  (that definition's NOT coming from M.E. patients, but from scientists, researchers, doctors and the World Health Organisation who must also be insulted and mystified that Simon Wessely is now a self-proclaimed "leading expert in M.E.' ???) which rarely gets a mention in the media, has been outstripped by an outmoded and, franky, wholly incorrect analysis of the disease!



You know by now, I'm an optimist. My optimism hasn't been so sorely tried in the years since M.E. (not that woolly umbrella that lets the poison rain in, called "CFS") was diagnosed in my case. I was full of life, optimism, joy, hard work, fun, plans. I still am, ready for when M.E. ceases to pull the carpet unexpectedly from under me.

These articles have made me determined, after a period of sober reflection, that there is all the more need for those of us who can, to keep positive and do all we can to go on holding out for the day when the truth is known and the correct treatments and cures will finally come our way. Sadly for those like Sophie Mirza and Lynn Gilderdale, it will come too late.


The Truth is Out There. 

Not just on the X Files, either.

Professor Wessely knows it, and maybe that's why he has used what influence he has with the media and government to rekindle old ideas and theories about M.E. (experts have called it that, incidentally, not those of us who didn't know any name for the disease that snatched our lives and livelihoods away) that distract the eyes of the world from what is right under its nose, with horrifying sensationalism and sleight of hand.


The Truth is Out There.

We have to keep on believing that, and not letting playground bullies kick us when we are furthest down! Sticks and stones may hurt our bones (if not as much as M.E.!) but calling will not hurt us (when we've stopped weeping in disbelief at the lies levelled at derailing real scientific enquiry!)


Much has already been written to point out the glaring errors in these articles. I've been so thankful for them. We all have:


Actual BBC caller suffering from M.E. speaks the truth

Niceguidelines.blogspot.com - one of so many excellent posts 

Letter on MEA Website 


Letters responding to Rod Liddle's article in The Sunday Times


I have pushed myself to the maximun over the last few weeks. Doing a tiny part of what used to be my full-time vocation, now vountarily and with consequences that make me immobile and inarticuate now for ages afterwards. Receiving those visitors who can only get away to see me in the summer. Luckily they understand my limitations!


All in my head? I think we all know it isn't, whatever we read in the papers. Or hear from little green men.

M.E. in England; are you in a hot spot?

East Yorkshire where the incidence of M.E./CFS is reported to be lowest

Study shows prevalence of M.E./CFS in 3 areas of England

Interesting article. Having pulled green wheelie bin round side of house today am unable to engage brain now. Figures here keep defeating me this morning!

The study focuses on three areas, (though I could only see two tbh) of England comparing the numbers of M.E./CFS patients diagnosed under the various criteria, by electronic search for CFS records, and from reports by GPs. Some distinction is at least made here between M.E./CFS and cases which involve "chronic fatigue" but which do not meet such guides to diagnosis as the Canadian criteria.


The crux of this seems to be


a) London has highest number of cases


b) East Yorkshire has the lowest.


My case down the road in South Yorkshire is defeating me today. I'm struggling to find or hit the right keys and just spent almost ten of your earth minutes locating "close brackets" on my keyboard!

Let's cut to the chase:

Conclusions: ME/CFS is not uncommon in England and represents a significant burden to patients and society.

The number of people with chronic fatigue who do not meet specific criteria for ME/CFS is higher still. Both groups have high levels of need for service provision, including health and social care.


Unquote. Yes; and yes. Didn't that go without saying?

If this is further step towards diagnosing and supporting those with the disease, as well as looking to define sub-groups and moving towards suitable treatments, all to the good.


The article is enough without my searing brain-fogged analysis!

Sorry! Catch you later! (Maybe when I've had a full neuro-immune system transplant!). Spellchecker rocks.

Several spoons saved! One-stop pharmacy comes to town

A bridge too phar - macy? Not this time!

Forgive me if I was a bit sceptical.


When a new 24-hour 7-days-a-week chemist opened up within my local GP practice last month on the outskirts of Rotherham, I wasn't immediately dancing with enthusiasm (supposing dancing is ever on the agenda since M.E. struck!)

My village has several pharmacies: my usual one is the Co-operative chain chemist at the far end of the main parade of shops. Then there's another attached to a clinic near the roundabout at the other side of the dual carriageway. As well as a small herbalist who dispenses aromatherapy oils and blank looks if you ask for something in particular.

Enough pharmacies to go round, methought.

As an M.E. patient, I have several problems with the new arrangement. The counter of the new pharmacy faces back into the GP waiting room opposite where the windows are for the doctors' receptionists.

More noise.

Less quiet places to sit.

Less time to brace myself against the glare and hubbub. The voices of the pharmacy staff and the receptionists, not to mention the waiting patients has upped the volume, muddle and cross-babble in my sensitive eyes and ears. On a bad day for me, or when the surgery is busy. Insurmountable and inevitable, of course, in most public places!


You have to come in further off the street to stick your prescription in a box now. The other was a slot not far from the automatic outer door. After all these years this apparently constituted a security risk. This coincided with the opening of the new pharmacy, of course, but nobody could be just honest enough to say that caused the relocation!

For me it means a few extra energy 'spoons' spent in and out, a more awkward juggle with prescription, lid of box, walking stick and whatever else I'm trying to carry if it's a day when I have nobody with me to help in any way.

This sounds so nit-picking. Honestly, if you knew me IRL you'd know I'm not thinking this in a whiny voice but with tongue often in cheek and usual clown's hat on. I'm blogging it here because I know those who visit my blog will understand these things. And maybe find relief that somebody else understands the daily challenges they face too! 


Returning from Diabetic Clinic late one afternoon (when is Diabetic Clinic not late, plus draining, agonising bus journeys there and back?) I had a new prescription from the hospital pharmacy as I went on the way home to collect a repeat prescription for some of my usual drugs from the GP surgery. The new one was for Atorvastatin, a low dose the Diabetic consultant wanted to try because the old Simvastatin was playing havoc with my M.E. and because stopping taking it had rocketed up my cholesterol again!

When I was too brain-addled and eager to get home to protest, one of the pharmacists who filled my other regular order asked if I'd like to fill in a form. To make things 'easier' and 'smoother'. Oh yes. Why not? I'm so full of energy, clarity and co-ordination, here, aren't I? But I smiled my usual smile, listened to his spiel and dutifully filled it in/out. It was simple:  just name, address and signature on a note to my own GP authorising the dispensing of the drugs on a regular basis.

Only when I came this week to need a repeat of some other stuff did the questions start to intrude. Would they need my diabetic medical exemption card flashing round in public like the Co-op does as they bawl your particulars around to the crowded shop?

No stress, in fact. While I had been filling the form that evening, the pharmacist had made a note of my exemption card's details for future reference.

Previous scenario: need to get the prescription from the GP reception, fill in my details, exemption etc after finding somewhere quiet to sit, a pen, recall the current date, locate a surface to write etc (the chemist itself was always too chaotic for me to attempt this on their premises) then trail round to the far end of the mall, queue, find out they can't fill the prescription for twenty minutes or an hour. So kill time slumped in an impossible armless chair contemplating the incontinence aids and remaindered Girls Aloud false eyelashes.

Next find out, when your name is hollered out and you manage to remember your address in front of the deadpan staring shoppers, that at least one item is inevitably unavailable and you have to make the whole return at an unspecified hour the next day when stocks would or would not be delivered. 

If all this joy was denied and no physical prescription was given into my hands, how would I fill in the next drug list, from the old prescription, ticking the boxes by each of the drugs that stretch to a couple of sheets? Fear not, O ye of little faith! This afternoon all was explained.

My exemption card kindly waved away, all the medicines dispensed correctly in one go with no backchat, bawling, or public humiliations, I found my prescription drug list discreetly enclosed in the package. Plus an ad for the upcoming flu jab for we vulnerables (???) at the surgery in October!


All this and, miracle of all miracles, the new statin had seamlessly replaced the old on my medicine list. Unlike in the past, when the list was never updated and I often had to write on my own drugs' names and dosages in Biro and draw myself a little box at the side to tick.


We are in the 21st century guys! I've grinned so much now I really need a lie down!