ME

ME

Saturday, June 27, 2015

hazed out days

Just a vague dull irritating ache throughout torso and limbs, feeling as if a detached “I” was looking on pityingly. For the past couple of days this seems to have been my exhaustingly shattered state of being, an exhaustion of mind and body, almost as if it’s payback for forcing myself out of bed after a mere 11 hours of intermittent unrefreshing sleep.

 I expect, and reluctantly accept, those cloying nausea inducing aches and pains, seemingly emanating from cervical and axillary lymph nodes. Familiarity has also enabled me to accept the more erratically intermittent acute pains in joints and muscles, which pain-killers can control to some degree.  Even the gnawing, discomforting, symptoms of IBS never seem quite as disconcerting as this seepage of hollow ache which seemed to embrace both psyche and soma.

Today, I at least feel awake and, I’ve managed to prepare a kedgeree for our main meal as well as a gently peppered chicken, peppers and mushroom casserole for Sunday and Monday’s lunch time. My halo has been polished once more. I’ve got to admit though that the slightly warmer weather does me no favours in terms of stamina; I only wish its enervating effect could be transformed into true relaxation, serving to ensure some long needed refreshing sleep.


At least I’ve managed in recent weeks to enjoy BBC4’s excellent coverage of Cardiff Singer of the Year, and by way of contrast, mentally grooving to ‘Jungle’ and Mark Ronson, amongst others, transmitted to our sitting room courtesy of the BBC. The sound of each event has been much enhanced via the SoundStage (a sound bar with built in sub-woofer) bought by my beloved for my recent 71st birthday.

Sunday, May 24, 2015

Akala on Britain's inherent Racism

Having just watched and enjoyed  Frankie Boyle's Election Autopsy on BBC iPlayer, I thought I should share Akala's contribution to the programme:



Thursday, May 14, 2015

From Storm to Calm

That all too familiar nausea producing tenderness of lymph nodes, particularly axillary & cervical, has returned; the accompanying discomfort frequently seems to precede a more acutely throbbing pain in the upper arm.

Wrist splints and supports, tubular bandages, elbow supports and tramadol are very much in demand at the moment. Omeprazole, mebeverine, and mometasone fuorate seem currently (but hopefully only temporarily) rather less effective, in tackling reflux, IBS, diverticular problems, and rhinitis.

Quite frequently, a variant (as opposed to my more regular nocturnal tradition) of restless leg syndrome seems to take control in the hours out of bed. As I arise from a seated posture, it feels as if I have to make a conscious effort to issue the necessary commands to my lower limbs, to ensure they travel in the intended direction, rather than making a random displacement / detour,  and assuring them that they’re quite capable of supporting my torso.as I move across the room.

Even quite minimal exertion seems to take a disproportionate toll on my shattered constitution. I don’t think I’ve become more lax in ‘pacing’, but rather that my stamina reserves have diminished somewhat, over the years, from their already low plateau.

Apart from the foregoing minutiae of my current state of unhealth, I still feel rather blessed that I have a roof over my head, food in the larder, and other home comforts, but, the real icing on the cake is the love that I share with ma belle Helen. Love is such an amazing thing, a symbol of transcendence in a world dominated by the forces of greed.


To life and love, I raise my glass.

Sunday, April 19, 2015

jet powered fluttering

I love these bright sunshiny Spring days; I was going to say mornings but, by the time I have manoeuvred myself from the divan, and into daytime apparel, ante-meridian is already veering toward the post component of the day. At this time of the year I’ve at least got a few more daylight hours to appreciate, even when the body achingly summons me to an afternoon nap.

What I don’t like about these bright days is the omnipresent temptation to do a little pottering about in the garden. Don’t get me wrong, I loved gardening when it didn’t have a payback clause attached, whereas now it’s far too easy to forget the limited number of spoons available.

When I succumb to the garden’s lure it so easily leads me to forget about “pacing”. My beloved is always good at reminding me to slow down, or stop, these times of physical endeavour, especially when I’m enjoying the change from my otherwise sedentary lifestyle. Actually, much of the time, the word sludge seems more appropriate than sedentary to express how this mode of being feels. Yesterday a short time spent mowing the lawn, albeit using an electric mower, seemed to have used up most of my 24 hour stamina supply.  

It’s always wonderful to hear the buzzing hum of the bees, both bumble and honey, as I walk past the heather laden rockery towards the wildlife friendly reserve at the far end of the garden. Primroses and cowslips are thriving and the nettles are springing back to life; the chatter, piped and fluted songs, of our avian visitors make an idyllic background as I move into reclining mode in the summerhouse.


 Even the fluttering butterflies seem like jet propelled aircraft in comparison to my enforced lethargy.

Monday, April 13, 2015

just so story - zambalouked

absolutely zambalouked - that's it - zambalouked; there's no other word for it, it's indescribable without its forbears, and the whole interminable history of signs and symbols encountered en route.

First we had that dance routine, it starts with the knees this time. A dull throbbing ache vibrates through shins and sets the feet in motion. Next it's the wrists that ache, a slow burning fuse that sets the heavy upper limbs in discomforted motion, and then the nausea begins.

Elbows insist the arms must stretch, release the terpsichoreal spasms that shudder down from the armpits. Turn onto belly, cross arms behind the pillow, stretch legs and hook toes over the mattress end to stop their flailing burn.

*******

Do you know that, this time, I thought I'd gotten away with it.

Nice bright weather coaxed me out of my cocoon, just a little light weeding here, tack down some mineral felt there. Can't have been more than a couple of hours exertion spread across two days.

Then there was the modest change of 27litres of water from the 180litre aquarium, 3 buckets full either way, and that's my exercise!

I wallowed in that grand illusion; this time no payback. Guess what ...

*******


A couple of days later the nocturnal dance followed by this achingly shattered, confused emptiness, a totally zambalouked experience. Absolutely zambalouked, that's all I've got to say! 

Entranced by the strangest zambalouk.

Tuesday, March 24, 2015

Of genuine woes and fraudulent transactions

Today provides one of those unusual mornings, at only 11.45 I feel almost awake; a rare instance indeed! Just over a week ago I intended to write a posting, more a catharsis for me than a word for others, but an intolerable lethargy weighed far too heavily. My scribbling that day went as follows :

“And wimpishness knows no bounds, the tears flow freely, the sinuses discharge an uninfected load as earth’s rotation slows right down A flood of fear and selfishness combines

A flood of fear
And selfishness
Knows no bounds –

The tears flow freely
And sinuses discharge
An uninfected stream

Of hopelessness …”

My brain seemed blocked; no words would flow until, some twenty-four hours later, the above emotion transmogrified into the following doggerel:

                                            Dog Errol


                                          It never pours
but when
there’s more
to follow.

Rain never follows
an unending drought.

If once a mouse
should catch a cat
the fox would say
I smell a rat

Whereas earlier in the year, despite all too familiar aches, pains, and wooly confusion, I managed to remain quite upbeat, by early March my reserves of emotional and physical stamina had fallen from their quite low plateau. Even the most modest exertion seemed to wipe me out. It was as if I had to make an exhausting conscious effort to persuade my legs to move in the right direction, as I ventured out into the hallway; this would occasionally be followed by a strenuous mental effort to remember why I’d headed there in the first place.

Earlier today it seemed as if the sun would make an appearance but, as I turn back towards the window, hailstones are flailing down from the heavens, their rebound, as they leave the ground, makes mockery of my prevailing inertia.

No sooner had I jotted down the previous paragraph than the sun, in full glory, burst through the residual cloud cover as grey skies turned to blue. The swiftness of this transition would be hard to believe were it not experienced first hand by one’s own senses. So, you may add, “your senses are working, even if much else of your corporeal being seems to be giving up on you. Why don’t you stop moaning?” the latter question I’ve frequently asked myself but, it’s far too easy to succumb to more negative attitudes when your feeling several degrees below an iffy par.

*********

A gum infection, and accompanying toothache, really set me back and, as is its wont, the worst flare-up occurred on a Friday night and the dentist doesn’t work at weekends. Strangely, the pain seemed to emanate from beneath a crown; intellectually this made little sense as I knew that tooth had been root-filled many moons ago. The worst of the pain then presented itself under a wisdom tooth; when I had an emergency appointment with my dentist she noted that I nearly went through the ceiling when she tapped the offending tooth. She duly prescribed a course of antibiotics to combat the infection, halfway through which the pain seemed to have magnified, and with my somewhat iffy immune system sundry familiar ME symptoms returned to bite me, affecting my balance, brain fog, aching muscles, chronic IBS and diverticular disease symptoms seemed to think it was carnival time; they rejoiced as I slid further downhill.

I was feeling so dreadful that when I realized my beloved was going to visit her brother, and would be away overnight, the floods of tears mentioned at the beginning came into play. My only utterance, through my wimpish blubbering, to ma belle was that I was afraid that I was going to die alone.

Matters weren’t helped when an early morning ‘phone call wakened me from my fitful slumbers on the morning of ma belle’s departure. The call was from a credit card company suspecting there may have been a “fraudulent use” of my credit card and, I must contact them on an 0845 premium number. I went immediately to saynoto0870.com where I found an alternative number to contact card services. Just as well that I used a free number as I was talking to (or being talked at) the bank for 40 minutes when palpitations and breathlessness took over. My beloved fortunately had not yet set off, as she had to take over the conversation from me.

The annoying oiks on the banks end of the phone line endlessly repeated the same questions re a gambling website that I’d never heard of and had I made a £500 payment to that site on that morning. Although they acted on the basis that a fraud had been committed, somehow this payment had been accepted and would appear on my next statement. They then explained that in a fortnight they would be sending me a legal letter which I would have to sign to say I had not made this payment. The attitude of the people I spoke to left much to be desired, especially when dealing with people who have a chronic debilitating health condition. I was definitely made to feel that I was a prisoner in the dock being grilled by a particularly abrasive prosecution counsel.

The card was only renewed earlier this month and has never left the four walls wherein I live, breathe and have most of my being! It had only been used a couple of times online at companies with whom I have had regular secure transaction completed via a “verified by” security check so, one can only surmise that there is somebody either at the bank or one of these companies who has filched my card details.

Sorry for such a sustained moan but, it only serves to illustrate my roller-coaster ride.
 


                                          


Saturday, January 31, 2015

Revivified on Mal's Factory

I've just posted a NEW poem on Mal's Factory - 'The Yo-Yo Man' a rough draft of which had lain dormant on my hard-drive since 2006

Sunday, January 25, 2015

what's in a day



It seems, and logically must be, impossible to know what’s going to happen one day to the next. Whenever we arrange any kind of appointment it’s usually made in good faith but, circumstances can so often thwart the noblest intention. I’ve been feeling quite vulnerable, health-wise, with a recurrence of sudden onset sundry joint, muscle and lymph node pain.

It’s rather hard to describe how (what starts as) an acute breach of one’s pain threshold transforms itself into a prolonged groan and nausea inducing pulsating bruised sensation.  Occasionally the application of wrist, knee, elbow and shoulder supports provides temporary relief but at other times they have to be accompanied by taking a couple of tramadol. For a few days in the past week, with the aid of a little preventative pain-killer consumption, I seemed relatively free of the above aches and  discomfort; even my IBS symptoms were in temporary abeyance.

That should have seemed too good to last but, I so enjoyed the welcome break that, I was rather shocked when the above symptoms alongside others returned with a vengeance. A chest crushing response to sudden unexpected sounds, IBS, post-nasal drip, sore throat, loss of appetite and sudden pallor overwhelmed me yesterday, and I became quite frightened. My body imposed a regime of rest on me; I kept dozing off intermittently throughout the day even though I’d had my normal twelve plus hours of bed-rest, with intermittent but not necessarily refreshing sleep, as prelude to this ultra-discomforted day.

At present it seems as if my sundry prescribed medications are failing in their duty, reflux, post-nasal drip, IBS are all nagging me into acute awareness of their presence. I still am able to count my blessings, welcoming each new day to bask in the love of ma belle amoureuse, having a roof over my head, water on tap, essential heating,  and food in the larder. My heart goes out to all those less fortunate than myself.

*******

This post also appears on Mal's Murmurings

Wednesday, December 31, 2014

HAPPY NEW YEAR


Here’s Hoping that the NEW YEAR may become 

one in which
each Individual’s Need
is met 

(and Corporate Greed
is overcome!)


Thursday, November 27, 2014

Not So Smart TV



Our move into Smart TV land has been nothing if not eventful. It has always been our practice to record one or other programme when confronted by a clash of timings, or simply an inconvenient programme timing, but more recently connecting tablet or laptop PC via HDMI to catch up on missed programmes. 

More recently we started to think of a smart TV, although not many of them had the major terrestrial channels [BBC iPlayer, ITV player, 4 on Demand, Demand 5] on Catch-Up. Eventually we decided to audition the Panasonic Viera 32" Smart HDTV, which each of these services but, unfortunately the local Panasonic store was finding that model difficult to obtain. Meantime having viewed several tech reviews online it seemed that contrast and blacks weren't a strong point of this range.

Having initially been disappointed by the lack of local availability, and seen these reviews determined me to look elsewhere for a Smart TV. Samsung offered access to all the aforementioned catch up services as standard so we ordered one to be collected from our local Waitrose store on Saturday. The only minor difficulty was the assembly of the TV stand but setup of all programmes and wireless internet connection went without a hitch. Picture quality was sharply excellent on HD channels, with rich deep dark colours where black was truly black, and we felt happy with our purchase.

On Monday a blue logo appeared on the right hand (as viewed) top corner reading "Book Me" next to a green dot. Once it had appeared it remained on screen no matter what channel I switched too. A search online disclosed that this was an all too familiar problem with Samsung Smart TV's, the sign appearing alongside any of the sundry BBC trailers. They first seemed became aware of it around the time of Wimbledon (a good five months ago) and I discovered that some users had the problem resolved via 'Remote Support'. I duly obtained a PIN for this service only to discover that the support office, which I had to phone, was only open between 9.00am and 6.00pm, so I was too late on that evening.

Prior to this I had registered the purchase with Samsung, online, full rigmarole of name, age, full postal address, date of purchase, specific TV model etc; even though the set was covered by an extended guarantee+accidental damage cover from the retailer.

The following day, after listening to what seemed endless adverts for sundry domestic products, I managed to get through to the appropriate support person. On getting through, I was asked to repeat all the information re. purchase, home address and more as Samsung Support evidently have no access to Samsung Registrations - a promising start! When I quoted the current personal PIN, displayed on the set, I was informed that their remote server was down so, they'd have to talk me through a procedure for 'Factory Reset' which would sort out the problem. 

With the set in standby mode I had to press three buttons (Info, Menu, Mute or something like that) and then switch on the TV. Twice this exercise failed in bringing up a panel on the left side of the screen and just displayed the normal picture. Third attempt was successful and the panel, from which I had to select 'Options', appeared. Next I entered 'Factory Reset' and had to repeat the whole set-up procedure.

By this time my beloved took over the 'phone as I was getting really stressed (verging on a full-blown panic attack), and she was given a personal support reference number which would speed up the process in the event of further problems. 

Next day it seemed, at first, as if the problem was well and truly solved but the message did briefly flash up on two or three occasions but quickly disappeared. At lunchtime today the infamous "Book Me" logo re-appeared and stubbornly remained in situ, even when we changed channels. My darling OH decided to 'phone the support line again and quoted the personal reference number given, to speed up the process but, she was also asked name, full postal address, model of TV, when purchased etc. The person then suggested to input the same keys as we'd already applied two days earlier, which I'd fortunately written down in sequence, and ma belle quoted back at him. At this point he decided that it was a faulty set and we should return it to the retailer for refund or exchange.

Judging by the (apparently) common occurrence of this problem a refund seemed the obvious option as this rigmarole had exhausted both of us; at tea-time I disassembled the stand and repackaged the TV ready for return.Two further trips were made to the store as I realized, when setting up (once again) our old UnSmart HD ready Sony Bravia, that I'd still got the power cord for the Samsung. No sooner had my beloved set off with the power cord than I also discovered a smart card adapter and extended IR cable belonging to the offending not too smart Samsung product.

This evening, as I told a friend of these problems, the friend asked if it was a Samsung as their inlaws had a more expensive model pack up twice within about twelve months of purchase - a capacitor having blown on each occasion. At least I've forestalled such future problems.

Sunday, October 26, 2014

CLOCKWATCHING


Strange how putting the clock back an hour can make one feel capable of regaining time; if only! To be honest though, it’s the very fleetingness of time that I’m still struggling to come to terms with.

As a child it feels as if the next summer holiday, Christmas Day, or even the weekend, can’t ever come soon enough. Confined to the schoolroom, the hours of each day hang leadenly as you watch real life going on at the other side of the window. Mind you this slower passage of time also provided greatly extended hours of play, leaving one exhausted long before the day was done.

These days, after a long night’s unrefreshing sleep and restlessness, that state of exhaustion seems to accompany almost any small task; perhaps it’s not really exhaustion but rather an aching void replacing that illusive space where stamina reserves should be accumulated.

When one’s sundry aches and pains are playing neurological havoc it’s easier to understand the lack of stamina but, this physically aching void doesn’t even seem to require these more tangible ailments. Mind you the IBS, diverticular disease, rhinitis etc; are always lurking just below the surface.

The lower my stamina reserves, the tetchier I become and, whatever reserves are there explode in bursts of angry expletives. I don’t deny that I’ve always had a bit of a temper, the outbursts often justifiable on socio-political grounds, but the frequency of expletives in my occasional outbursts seems to have grown exponentially. Anger stems from frustration, frustration from limitations on both physical and emotional stamina.The truly ridiculous thing is that these outbursts leave me feeling more drained.

Although these aching voids can sometimes feel like an eternal punishment, days (and even years) have passed by so swiftly, as if to emphasize the weight of spiritually / emotionally good days I must be having. Any day spent with my beloved is wonderfully worthwhile, even if I’m not always the best of company.


So little time, and so much I want or intend to do. I’ve put the clocks back but, sadly, I cannot put back time.

Tuesday, October 07, 2014

living moderately

Well hello again! I’m not sure whether its weeks or months since I last proffered a “proper” blog post and, I must admit that the prospect seems rather daunting. No excuses, there’ve been good times and bad times, rough days and smooth days, since my last full offering and my stamina reserves have been used on other pursuits.

Upturns are represented by my casting aside the walking stick on several occasions, managing a moderately brisk walk of several hundred yards, whilst still lamenting an inability to manage a few miles. Some people are never satisfied!

I still enjoy our garden, no matter what the season, albeit from a passive observational perspective; what would we do without the professional services of our friend Martyn? Although I sometimes pride myself on my pacing, I still find myself suffering the payback penalty when enthusiasm for a modest task leads to even a modicum of over-exertion.

The usual problem is recognizing the exertion that may be demanded to fulfil an apparently simple undemanding task. One such example was a recent successful attempt at re-potting a contorted hazel shrub. Initial preparation of the new container went smoothly but, once I’d placed the plant in situ, the task of infilling turned out to be the proverbial straw. Brain fog, an amplification of all my familiar sundry aches and pains (muscular, joints, lymph nodes, abdominal spasms etc) and an inability to control my legs as I headed back to the house – a kind of conscious restless leg syndrome! The next couple of days passed in an achingly painful, mentally hazy, sense of being; it took a little more time before a tingling sensation of being trapped in an undersized skin receded.

It’s a few weeks now since my beloved retired from her salaried employment, at the doctors surgery, so I’m really enjoying more of her company. Mind you, she’s still meaningfully occupied as a local preacher, an assistant on computers at the Acorn Centre, Fair Trade issues and involvement with the local Labour Party.

 Until recently it has been somewhat difficult to persuade her to take much needed recuperative rest. Having always pushed myself, working and playing hard, prior (and probably causally related) to succumbing to ME, I do worry that some people ill-advisedly over exert themselves rather than listening to their bodies and ensuring they always have some stamina in reserve.

                                                            ++++++++++++++++++++

Encountering ME - a selection of poems, reflecting my experience of living with moderate ME can be read online or available as a free download from Scribd.

Mal’s ME Jottings – a selection of blog posts are also available on Scribd – read online or available as a free download.


  

Sunday, September 28, 2014

boys and their toys

I posted a couple of variant sketches, made using the basic TegraDraw programme on TegraNote 7" tablet, on my  Mal's Picturebox blog. Further sketches made using my 70th birthday toy can be on my Facebook artist page  in album Tegra Sketches and here's another to be going on with :



Wednesday, September 24, 2014

Sunday, September 21, 2014

new snaps on Mal's Picturebox



I've just posted a couple of snapshots


a speckled wood butterfly - 


- even the globe thistle has been revivified -