ME

ME

Monday, January 08, 2018

just in passing - albeit taking time





Adorned in loose fitting garments, shirt and unzipped fleece; of a sudden it felt like my armpit lymph nodes  were being strangled by a tourniquet. Strangely, although all garments felt oppressive, the only way to alleviate the nausea inducing discomfort (emanating from the armpits) is to tightly squeeze my upper arms against the sides of my torso whilst tightly clasping my hands behind my back. Admittedly, as so often with these sudden onset ailments, the armpit tenderness appeared almost simultaneously with excruciating aches in both wrists and elbows: the application of strong elasticated supports on wrists and elbows tend to alleviate the more extreme pain.

There follows a discomforted waiting game, whilst I curl myself up, or flail my limbs, into a position that distracts me from the nausea. Next, the debate with myself on whether to take some tramadol, or hope that the pain will dissipate itself!


Whatever activity I’m engaged in, albeit browsing a newspaper, or using a laptop, is of necessity terminated the instant any of these discomforts attack. 

Wednesday, December 20, 2017

The EPSON saga continues .....


additional DMs from Epson & my response: 11.16hrs 20/12/17


Hi Malcom, In order to assist you can you please confirm where in the setup process the connection fails? do you have a WPS buttton on your router?

 this message sent 13 minutes ago from Epson UK
17m 13 minutes ago


 Epson UK
 I am sorry, the consmer pritners do not come with a USB included. Please see the following article regarding the USB cable: http://kb.epson.eu/article.aspx?article=1034&p=7 …

 this message sent 12 minutes ago from Epson UK
15m 12 minutes ago


 Malcolm Evison (my response)
 Yes, the hub has a WPS button - but tried that last night - same negative result! Just having emerged from bed (my active hours limited by chronic illness) will look at article about USB cable later on.

Malcolm Evison (my next response)
Yes, I did try using the A-B USB cable (much less than the 1.8 metre length) when initially struggling to set-up the tetchy machine for wireless use. Something odd is going on!


Malcolm Evison (my extra response)
Incidentally, don't your keyboards allow you to use the second L in the word Malcolm. Maybe your keyboards aren't up to scratch

******************************

P.S: this evening tried to print 1 15x10cm photo you maybe won't want to believe what happened next!

Malcolm Evison (DMd & tweeted @EpsonUK at 20.50hrs)

First time I've tried to print since all the faffing about - won't print as it can't find the printer (ethernet connected) - tried all pop-up suggestions but still failing to find the printer. All other items have and always do work with this hub! Won't connect wireless & lost existing connection.


First time I've tried to print since all the faffing about - won't print as it can't find the printer (ethernet connected) - tried all pop-up suggestions but still failing to find the printer. All other items have and always do work with this hub! Won't connect wireless


Approx 15 minutes later via Epson diagnosis gadget finally told that there was a printer and it was ready to print - Epson machines seem to hate consumers!

At 22.40 hrs I have just sent the following DM to Epson UK - I do hope that they will not keep upsetting me with their temperamental machine. I have never before been fazed by the installation of any consumer electronics gizmo!

"after further faffing about - and many exhausting climbs upstairs - your diagnostic gizmo finally told me printer was connected and ready to print. Not sure whether it re-discovered the ethernet connection (it had lost) or has it found wireless (of which I'm doubtful) - you have aged an elderly person enormously!"

Tuesday, December 19, 2017

PRINCIPLES carry a COST

I was unable to purchase another HP printer, although I’ve always been pleased with those I had previously purchased. As a result I purchased an Epson XP55 which has been the source of deleterious effects on my health (see https://sinnaluvva.blogspot.co.uk/2017/12/epson-woes-just-for-record.html }.

Sadly, having principles invariably entails a cost.

Whilst working as an accounts manager, late 1970s to mid 1980s, for a reputable furniture retailer, I refused to adjust invoice details, with reference to delivery addresses etc., in order to enable certain privileged business customers to avoid VAT payments on the items. This didn’t make for a happy working relationship with the stores general manager and, ultimately, led to my tendering my resignation.


Sadly, having principles entails a cost.

EPSON WOES - just for the record

Having made a grievous error of purchasing a new photo printer (older ones now best for document printing alone) I found myself damaging my health (and deeply upsetting my beloved) in trying to set up the new machine - the following is a transcript of my communication via Twitter with the printer company - just for the record ....

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


EPSON WOES – just for the record



Malcolm Evison‏    (tweeted)
@sinnaluvva
 Dec 16
More
@EpsonUK took me two hours to connect to new XP55 machine - wouldn't reognize wireless or ethernet - after  a while did accept fixed IP Address via ethernet. Never had such problems with any printer connection over many years. Displeased!

Epson responded to my tweet:

Epson UK‏
@EpsonUK
 2h 2hours ago (Dec 18)
More
Replying to @sinnaluvva
Hi Malcom, Sorry to hear that, If you require any assistance please follow our profile and DM us your query. We will be happy to help. Kind Regards.




DM to Epson as requested 2 hours earlier 1920hrs 18 Dc 2017


setting up my new Epson XP55 took ovr two hours on Saturday, would not connect to wireless or ethernet Eventually had to set up a fixed IP. Never had a machine with these problems over many years and with a chronic I'm totally knackered by the effort. What is wrong with your machines. Suggestion of temp USB connection to aid wireless set up totally useless but, only USB cable I had to try was an Epson one from over a decade ago - maybe not right now - (that printer collapsed, as did another Epson in just over a year's light use) don't know what's wrong with me that I gave Epson another chance.


addendum DM at 2000hrs

sorry, I omitted the important word "illness" after word chronic. And, having paid £83 for 1 set of XL inks ( I misread thinking it was 24 cartridges) I think you should supply a technician gratis to set up your machine with its set-up inks! *

*[Not part of transcript - I usually rely on compatible inks but was hoping for something more impressive!]


19 december from Epson UK (below)

Hi Malcom, I am very sorry that you are unhappy with your Epson XP-55, It is never our intention to disappoint customers in any way and I would like to apologise for any inconvenience caused. Were you able to connect the printer in the end? Is there anything we can do to assist you?

my response to Epson UK via DM

I don't understand why it can't find a wireless signal or an automatic IP address via ethernet - I now have it situated in an upstairs room close to our Virgin hub (100 Mbps) - never had these problems with HP or Canon printers - I've even been able to troubleshoot others problems. Unfortunately, constant re-attempts at setting up are not at all conducive to retaining my already low stamina levels (ME & FM sufferer since 2003).

plus my DM

its current position is of course most inconvenient!

plus my DM


After another unsuccessful and exhausting attempt to achieve a wireless connection to your product, which leaves me shattered, I am more than ever regretting my purchase. IF A USB CONNECTION WOULD ASSIST IN SETTING UP THE WIRELESS CONNECTION (as your set-up disk suggests) WOULD IT NOT BE THE DECENT THING TO DO TO SUPPLY (GRATIS) THE APPROPRIATE USB LEAD. There is definitely something odd in the way your machine is constructed.

Friday, November 03, 2017

When Purgatory Beckons

I’ve always heard about the road to hell being paved with good intentions and, have more recently discovered that another’s good intention can bring severe dis-ease to the one being benefited by their deed. The past few weeks have not been easy for me to cope with, the aftermath of my minor stroke and that of my step-daughter’s accident, the latter needing my beloved’s assistance to dress and shower herself.

Over many years I learned to live both in communal houses and alone, much of the time at peace with myself. In more recent years I have lived in relative peace and harmony solely alongside my beloved OH. As I’ve mentioned before, since the onset of my chronic illness I have become increasingly tetchy, even over apparently trivial matters.

This morning my semi-invalided step-daughter suggested that the dust in our (that of mine and my OH) bedroom  was rather un-healthy and, decided with her one (currently) usable arm to take the vacuum cleaner upstairs to do the cleaning. You can only imagine, or maybe not, my dismay at being told, by a young lady who has four cats romping about in and out of all rooms, that our bedroom was unhealthy! I had already been made to feel guilty at my relative inactivity when a person with one arm immobilised, and purportedly in intense pain, could manage domestic duties of a kind which my physical and emotional stamina levels require that I ration.


The final hump-breaking straw was her decision to mop the floor using a pot pourri scented thick disinfectant, as a result of which I later had to struggle to regain my balance as I took a slipper shod slide across part of the bedroom floor! Fortunately that struggle ended successfully but, it was yet a further warning that a good deed, if ill considered, is certainly a step into purgatory.

Thursday, November 02, 2017

CHANTING PSALMS out of ANGER and FRUSTRATION

Currently, my temper is running on a very short fuse, swift to anger but sluggish in calming down. At its worst I end up upsetting those whom I love and even, at times, keeping temper simmering long after the immediate (sometimes trivial) cause for letting it loose has disappeared. There are many times my anger is justified especially when I look at the policies pursued by our Tory government, that of the US of A and, indeed, the governments and people of all nations that punish the vulnerable and worship private wealth. Very little regard seems to be paid to the unethical practices that have enabled that wealth accumulation in the first place!

My less justified outbursts usually occur when I am in rather acute pain and discomfort; one word out of place, from another party, can so easily release a vehement stream of verbal chastisement and abuse from yours truly. These are times when my response / reaction leaves me ashamed and guilty for the distress which I may have caused.

Having expressed that mea culpa I can move on to the more regular occasions when the air around me becomes filled with expletives and near blasphemy. The frequency with which limbs and torso are acutely and crushingly subjected to intense discomforting pain has recently increased, reverting to that state I experienced not long after ME (myalgic encephalomyelitis) first held me in its thrall. The main trouble is that the discomfort strikes so suddenly, whether in wrists, elbows, knees or elsewhere on the torso, it almost inevitably transforms the axillary lymph nodes into a discomforting, nausea inducing, dis-ease. During the night, as I futilely hope and pray for refreshing sleep, restless legs, painful feet, and lymph node tenderness compete for my attention, the only reaction that rears its head is a ferociously spitted out “Jesus Christ” followed by a torrent of expletives as I vainly attempt to find a comfortable position either in or out of bed.

This morning, as I checked out my Facebook homepage, I stumbled upon this quote from Blake Chastain – “Sometimes swearing is just a minimalist psalm”.

So, even when I find it difficult to pray, I find myself enthusiastically chanting Psalms.

In the Book of Psalms there is so much anger and despair amongst the ritual hymns but, none as succinct as the involuntary F-word that spews from my mouth when pain and discomfort is at its keenest.



Tuesday, October 24, 2017

On the Opening and Closing of Doors

ON THE OPENING & CLOSING OF DOORS


Well, life has certainly been eventful, and frustrating, since my fall (http://sinnaluvva.blogspot.co.uk/2017/09/a-fall-becomes-set-back-and-shaggy-dog.html & http://sinnaluvva.blogspot.co.uk/2017/09/gratitude-for-nhs.html) but, nothing really much in any way I could regard as positive. Because my PPI (omeprazole) was not compatible with the clopidogrel, the GP switched my prescription back to lansoprazole; I had taken lansoprazole for a number of years and had discovered the most effective dosage was 30mg twice per day, morning and evening. It, therefore, came as something of a surprise to find that I had only been prescribed 15mg once per day.

The new medication regime began on the 19th September but, so painful and discomforting had my GORD and IBS symptoms become, that by the 27th September it became essential for me to have an emergency appointment at my GP surgery. The appointment was with a nurse practitioner who duly increased my dosage to 30mg once per day.  Even with this dosage, I still had to resort to a strong antacid each evening.

Meanwhile, I was twice proffered an earlier appointment (in a saga which began a few months back) with the surgeon to discuss removal of my gall bladder but, I automatically declined as I now needed to get into a pattern with the amlodipine & clopidogrel and, I realized that if an operation was to take place I would need to be off the clopidogrel for around one week.

By way of diversion, we have an additional resident chez nous. Beth, the eldest of my two step-daughters, was discharged from hospital in York on 10th October following a bicycle accident on the 3rd. She has a fracture in the neck of her humerus, necessitating immobilizing of her right arm and plates in her jaw at the sites of two of her three jaw fractures. This latter condition means that she is only able to manage soft / pureed food. My beloved OH has to help her both to dress and to bathe / shower.

Eventually the pre-arranged appointment, on the 23rd October arrived and ma belle chauffeuse accompanied me to the clinic at the District Hospital. The doctor soon explained to me that as I had recently had a stroke, albeit a minor one, she would be unable to carry out the operation as the anaesthetic required could trigger a further more severe stroke and, although I could apply for referral after six months of reasonably good health, she personally didn’t seem much in favour of this, as she felt there would still be the risk of a more major stroke. When my beloved asked the surgeon what should happen if I had a further infection of the gall bladder, she suggested that antibiotics, albeit with the possibility of increased antibiotic resistance, were much preferable to a risk of paralysis. She was of course aware of my family history [my mother suffered a major stroke within seven days of experiencing a TIA – spending her remaining years with total paralysis of one side of her body – when she was of an age only marginally advanced from my current state of being].


Whilst I was somewhat relieved that the doctor hadn’t pussyfooted about the rather stark options, it did seem to emphasize the whole mortality issue as, later in the day, I began to feel a sense of desolation regarding an apparent futility of existence. I wondered, for a while, if I was reverting to a state of depression! In the clear light of a new day, chronic illness notwithstanding, I was so blessed with a loving wife and family, a catholic taste and enjoyment of various musical genres, literature, fine arts, and a faith that never lets go of me even when belief has evaporated.

Thursday, September 21, 2017

Gratitude for the NHS

Saturday and Sunday I still felt somewhat shocked and shaken, by the fall I had on Friday evening, as full sensation and feeling hadn’t yet returned to my right foot and ankle. As I stood up it still felt as though I had a spongy platform sole on that foot.

My beloved rang my GPs surgery first thing on Monday morning and, she explained to them what the paramedics recommended, so the Wednesday appointment offered wasn’t soon enough. About half-an-hour after that, a practice nurse ‘phoned me back and, when I explained the situation, I was soon granted an appointment with Dr Desha at 12.40pm. Although there was a delay before getting in to see the doctor she was extremely thorough in her examination of me, blood pressure, reflex, touch, response to hot & cold in the foot etc. She prescribed 4 dispersible aspirin to be taken immediately, Clopidogrel and Amlodipine, to be taken each morning, to deal with my high blood pressure, and prepared a referral to the TIA clinic at Harrogate District Hospital.

As the time was getting close to that for the House Group / Bible Study chez nous, my beloved left me waiting for my prescription at the local pharmacy whilst she went home for the car to collect one of the attendees at our meeting. Sat in the over-chilled air conditioned pharmacy I suddenly felt quite shaky and weepy. The pharmacist kindly phoned my beloved to see if she would bring the car around to collect me.

The house group had already started in the meantime and I was eager to participate rather than sit on my own, feeling broodingly sorry for myself. Around 3.00pm, mid-way through the meeting, the ‘phone rang and, it was the hospital informing me that I had an appointment at the TIA clinic at 10.00am Tuesday.

Next morning I saw Dr Brotheridge at the clinic and, as the symptoms had not completely cleared within 24 hours it couldn’t be classed as a TIA but was likely some kind of minor stroke. Within an hour I’d had a CT brain scan done and, on returning to the clinic he informed me there was no sign of a bleed and the brain looked normal and healthy. He also said that the medication my GP had prescribed was exactly right and he would expect me to remain on that. Meanwhile an appointment was made for me to have an ultrasound of my Carotid and Aortic arteries at 1.00pm; this left time for ma belle chauffeuse and I to pop home for a cuppa and a snack, but before that we had time to go for some blood tests which my GP had requested.

The attention given, and the efficiency, in each department was really special.


Saturday, September 16, 2017

A Fall becomes a Set Back and a Shaggy Dog Tale



Yesterday’s events brought back a memory from 1962 when I was a student nurse in Exeter. I especially recalled a young man on the orthopaedic ward who had a talent for inappropriately releasing the cot sides from his bed. He was recovering from an above the knee amputation but, to his mind and nervous system, the phantom lower limb was far too tangible. Eventually he became an expert user of crutches as he scooted around the ward and, he was soon performing acrobatics on these supports. This young man later returned, on several occasions, to offer encouragement to children both preparing for and having undergone lower limb amputations.

These days with all my sundry aches, pains and other ailments, I envy that resilience. What brought those memories to the fore last night was my having a fall, in the living room at home. I’d just decided to go for a shower but, after the first step I suddenly felt as if my right ankle and foot had just disappeared. No sooner had the thought occurred than I plummeted to the ground, my head landing on the dog’s snout. The dog was on the sofa near the door and, as I fell I heard a growling bark very close to my ear. That growling bark was the dog’s defensive call as this figure fell directly in his direction.

My beloved’s immediate reaction was a desire to drive me down to A&E at the District Hospital but, as I still had no sensation of there being anything below the calf of the offending limb I was reluctant to venture out. Whereas the young man, referred to in the opening paragraph, fell because of the imagined / phantom lower limb. My fall was because I had an intact limb but had suddenly lost all sense of there being an ankle and/or foot there.

We phoned the out of hours doctors number from which we were referred to the 111 service, (? against using the word service), to whom my wife first spoke about me having a fall due to loss of sensation in my foot and ankle. They then spoke to me and went through their usual script – attempting to detect a stroke or the like – but I became increasingly frustrated as she questioned whether I’d had the numb sensation before I got up to walk, despite my constant reiteration that the loss of sensation and my fall were a simultaneous occurrence, even though the numb sensation was still present. She then asked if there was any bleeding and I mentioned I’d had a little bleed from the base of the ear but, that was probably due to falling onto the shocked dog. There were also the usual questions about whether I was running a temperature, “place your fingers on your chest do you feel as if you’re running a temperature” was their suggestion. I explained that in my case I’ve been diagnosed with an infection by a GP even when there was no sign of me running a temperature. Ever since I succumbed to ME (myalgic encephalomyelitis) some 14 years ago, my body thermostat has proved somewhat erratic).

The person on the switchboard then returned to the stroke detection questions – can you raise your arms above your head, can you smile, is your mouth twisted – to which I replied that I didn’t think it was anything like a stroke, having witnessed my mother when she had a major stroke and several TIA’s but, it wasn’t like what I was experiencing. I was just concerned about the loss of sensation in the right foot and ankle and the consequent fall which had proved most unnerving.

I eventually became rather fed-up with the inane repetition of questions I’d already answered from a person who on their own admission had no medical experience, nursing or otherwise, but she did have a list of questions she had to ask. Eventually in frustration I hung up. A short while after that, they rang back to say that there was an ambulance on its way. The ambulance duly arrived expecting to see a dog-bite victim who’d had a stroke!

The paramedics most conscientiously carried out tests on blood sugar, blood pressure, pulse rate and a couple of ECGs. Blood pressure was rather high and the one carrying out the tests did at first wonder if there was a sign of AF. They suggested that I contact my GP on Monday to arrange for a review.

The setback, referred to in the posts title, is that temporarily at least I’ve had to once again resort to the use of walking sticks, albeit as a precaution against a further fall. The shaggy dog tale / story is I believe even more obvious.

 Even an hour after the fall, as feeling gradually returned to my foot, it felt as though I had a crepe platform shoe on that foot, whilst the evidence of my eyes and the rest of my nervous system reassured me that my foot was actually touching the ground.


There was a time when calling my out of hours doctors number would put me through to the out-of-hours doctors clinic at the hospital. There also used to be a service called NHS Direct which had a far higher proportion of medically trained staff dealing with enquiries than is apparent in the 111 service. After this experience I’m rather pleased that for many of us it is, at present, still possible to have a face to face appointment with a flesh and blood GP even though the waiting time is sometimes a problem. I have never felt much adept at communicating with a telephonically disembodied voice, especially one that is so obviously reciting questions from a script!