the meanderings and word-play of a left-of-centre armchair activist - living and frequently struggling with moderate M.E. - where (bad) health, faith, politics and the joys and troubles of daily life collide.
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.
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.
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.
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.
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.
time, and so much I want or intend to do. I’ve put the clocks back but, sadly,
I cannot put back time.
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
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!
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.
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
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.
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 :
I really hate that sudden feeling of confusion, an un-preparedness to pursue that task or goal which, only a few moments before, you knew you were fully capable of fulfilling. It's not even anything out of the usual, perhaps even part of a regular routine, that suddenly becomes daunting. Even one's thoughts seem to be jumbled up, impossible to decipher. Quite a while since I last experienced that but, yesterday, it suddenly hit me and I can't even remember what the task was that I either completed or cancelled. At lunch-time today it seemed more like a panic attack as I began preparation for this evenings meal; I'm rather pleased with myself that I was able to continue despite a sense of emotional exhaustion. Glands, at side of my neck and under my chin, have been feeling a kind of sharp bruised tenderness for a couple of days now whilst my eyes have reacted with extreme sensitivity, spasmodically and hopefully very temporarily, towards any light source - a kind of sensory overload. Sudden waves of overwhelming exhaustion, as if something's achingly gnawing through my bones as well as muscles, serve to remind me of my quite routine state of being for months at a time during the past decade. The bright side is that it has made me feel most grateful for a fairly sustained run of reasonably good days. I'm just hoping and praying that I'm not heading for a total relapse.
With ever increasing exposure to its spouting puce physiognomy, one can't help but feel that there is very little hope for those in society without the necessary wealth inheriting, tax avoiding, gene. This is a bold virus that strives to batter the economically unfortunate, and the disabled, into submission rather than replicating itself. Other viruses of similar status tend to thrive as bloodsuckers. This particular virus emanated from Eton, transmitted via an Oxford-Bullingdon Syndrome, and is sustained through excessive exposure on BBC and some other TV channels. Whenever this vile puce spouting physiognomy appears, my immediate response is an urgent desire to vomit, accompanied by an uncontrollabble explosion of expletives. Surely someone with a mature humanitarian conscience could produce an antidote for this pernicious disease.
Colour comes back into life – overwhelms the morbid grey – despite
their defeat with the death of their leader, it wasn’t long before the
disciples were enabled to boldly proclaim the good news – something
miraculous had occurred, these frightened and despairing social misfits
were transformed – that’s the experience of RESURRECTION!
"Which way do I turn?" and "dare I turn?"; these related questions come to the fore at erratically scattered instants of day or night. In the past few days, tortuous pains have danced from left side of the back (a hollow bruising ache just below the shoulder blade, as if one was undergoing a sequence of blows from a felt coated lead lump hammer) to a more acute nagging pain in the left side of the back just above hip level. These sensations tend to overlap with a more constantly recurring gnawing ache just under the rib cage and, other old familiars returning with a vengeance. A nausea inducing throbbing pain, on the inner side of the upper left arm - accompanied by a tenderness in the armpit, frequently prevents my attaining an appropriate period of rest during the night.
As exhaustion overtakes me mid-afternoon, a gnawing ache, occasionally becoming more acute, in wrists and elbows necessitates the donning of wrist splints (both arms) and the taking of additional pain killers.Today, this discomfort in upper limbs vied for honours with a throbbing pain around the knees which seemed to ease slightly with the donning of elastic supports. A sensation of giddy light-headedness, alongside not infrequent griping reminders of my IBS and diverticular problems, does little to help me feel at ease.
Despite all the above, I did manage to enjoy a celebratory lunch at The Park yesterday for our wedding anniversary but, even that didn't come payback free!
So much of our lives are spent simply letting regular life experiences wash over us. Passive recipients of what ever opportunities life offers us we, of necessity, avoid reacting to most peripheral events. Life goes on as normal but we may suddenly be ambushed by limitations to what has, so far, been our normality. On many occasions the limitation may simply be with regard to the specific situation, in which one finds oneself, for which we have had no prior experience or necessary practice. Variety happens but, it does not always seem to add spice to life; as a matter of fact much of the variety may be of an unwelcome kind. Health-wise it has been a case of swings and roundabouts; just as one celebrates alleviation of a particular neurological symptom they seem to stumble upon a variant manifestation of the same underlying condition. This morning, my body reminded me of the limitations imposed by a combination of neurological illness and the general aging process. It is almost as if there are (at least) two distinct normalities, that of the mind and spirit struggling with that of pure corporeality. It is several years now since I first had to learn, experientially (the hard way), how to pace myself; having reluctantly accepted that I must now function on/from a lower plateau, than was my earlier norm, I still feel a sense of shock when any jolting reminder of this limitation catches me out. As the sun was shining, I set out this morning, with a walking-stick supported spring in my step, to collect a prescription from my GP’s surgery, a loaf of bread and a bottle of milk. The Surgery isn’t any more than a seven to eight minute walk (even accounting for my limitations) and the bakery and grocery stores are passed en route. That would seem to be a little light exercise but, I hadn’t accounted for meeting up with a couple of friends during this restricted travel. I stopped and spoke to my first friend J for two to three minutes and a couple of minutes further on in the expedition encountered friend C with whom I had a little chat. On arriving at the Surgery’s reception I had a couple of minutes wait before I picked up my prescription; by this time I was feeling quite light-headed and aching limbed. What I’d forgotten was that, as part of my current ‘normality’, standing to chat seems to reduce my stamina levels more swiftly than the brief walk itself! It was with great relief that I was able to sit down for ten minutes at the local pharmacy, in the same parade of shops as the grocery and bakery shops’ whilst they dispensed my sundry medications. By the time I got back home I was feeling achingly shattered! ***** I suppose that this ‘shatteredness’ shouldn’t have been so surprising, considering that the previous couple of days had been quite eventful, even incorporating a visit to A&E and a consequent overnight stay in the hospital. Saturday morning, at about 2.30am, a sudden sharp bruised pain down the left hand side of my rib cage, accompanied by an acute stitch-like pain emphatically (horizontally) underlining the breast bone. The pain seemed to ease as I clasped the painful area with my right hand and, it eventually disappeared after about fifteen minutes. So far, so good but, the bruised aching pain kept nagging away at regular intervals in the course of the day. Around 8.00pm, the pain returned with a pallor inducing vengeance; a hollow giddiness occupying head and torso left me feeling quite disembodied. At this time my beloved repeated an earlier offer to take me down to A&E and, this time, I instantly accepted. The receptionist (at A&E) thought I needed to sit down and said that ma belle could log me in. Although my blood pressure went soaring, I was relieved that the ECG showed normal coronary activity. When the doctor examined me she suggested that I had a chest x-ray and blood tests but, as a follow up blood test would be required in the middle of the night, had me admitted to hospital. The doctor had inserted a cannula in the back of my hand which unfortunately, and somewhat dramatically, fell out as I moved into the X-Ray department leaving a splendid crimson blood trail on the floor. The nurse swiftly grabbed a pad to which I applied pressure to stop the flow from the distended vein, whilst he swiftly mopped and disinfected the contaminated floor area. Eventually a porter wheeled me up to Bolton Ward where they initially set me up on a heart monitor. Everyone with whom I had contact on this ward made me feel like a person, rather than a client, leaving me most impressed with their friendly and efficient attention to their duties. The clinical support auxiliary very swiftly, and without any fuss, cannulated the median cubital vein; nursing staff always seem to perform these tasks better than doctors, presumably because they have more experience. My second lot of blood samples were taken at around 3.00am on Sunday and later the doctor told me that the tests were negative. Once this was ascertained a nurse came and removed the heart monitor. By 10.50am my discharge papers had been prepared and, I only had to await ma belle chauffeuse to whisk me back home. I was assured by both ward sister and the duty consultant that, even though the pain was musculoskeletal rather than cardiac in origin, ma belle had done exactly the right thing in taking me to A&E. It was wonderful, and seemed extra special, to share Sunday lunch (which I had partially prepared the previous afternoon) with my beloved but then, every moment shared with my better half is very special.