memo to myself and others re chronic illness

I've just been reminded, once again, by a friend's misunderstanding whilst communicating via Messenger, of how much one loses when living with a chronic illness - in my case moderate ME (myalgic encephalomyelitis). 

What they had failed to understand is how impossible it proves / has proved to plan any events ahead. Even a meal out locally, with my beloved, can only be cofirmed at last minute and, even so, is an extremely rare occurrence. I have lost contact with most of those I had considered "friends" prior to succumbing to this illness, almost 15 years ago, and have had to rely, to a large extent on the proverbial mountain coming to me.

Going Viral - a random note

Just gotta be honest; as I feel at the moment I don’t want to see of hear any reports of any text, video or image going viral. Since the end of last week I’ve been the victim of something viral, albeit of a gastro- intestinal variety. The diaorrheal component began last Saturday evening and by Sunday had become quite chronic; this symptom remained constant throughout Monday and Tuesday, without regard for my having substituted modest amounts of plain food (and avoidance of caffeine) in place of real food, alongside doses of loperamide / immodium.

In the early hours of Wednesday morning, four urgent visits to the loo were necessitated prior to 04.30hrs, so a further dose of loperamide was required. Miracle of miracles, no further visits to the aforementioned loo were required, other than false alarms, before a further twenty-six hours had elapsed (06.30hrs on Thursday morning) and things seemed to have normalised. A cause for rejoicing, albeit of short duration; by 11.30hrs the old enemy had returned.

I trust my friends will avoid mention of things “going viral” when in my presence!

just the start of another normal day

Where to start; how to define; what words can be used to describe another normal day. I wish to God I understood what is a normal day? Even my days, curbed by health restraints, proffer plenty of variety in terms of food ate, music listened to, DVD’s  viewed, even times of dining may vary, yet somehow they seem to belong to what could be considered a normal day.

This morning I arose from the duvet realm shortly after 10.00hrs, earlier than some but not much later than most days. Even before I left the bed, a throbbing ache in the sides of both knees caused a little discomfort which, strangely, felt like a painful hollowness between upper and lower components of the lower limbs. Nothing unusual there, apart from the degree of ache and discomfort, for this time of day; a mug of coffee and a bowl of cereal were definitely needed. Of course Piper, our beloved hound, greeted me with tail and rear portions wag and sway as he carefully directed me towards his doggy treat store.

So far so good, it’s just another normal day. Having breakfasted I settle down to read the tabloid-sized i-newspaper for fifteen minutes or so before acing wrists cried enough. After a little doing-nothing break, switched on my android tablet, for a cursory visit to twitter-land and newspaper summaries, surfing for about twenty minutes. Another caffeine intake required to keep me awake, followed by a further few minutes with the i-newspaper, only to have a discomforting sensation, tenderness of the lymph nodes, in the armpits. Time to move to the larger sofa, put my legs up and allow the music from radio 3 to wash over me; Piper swiftly leapt over my lower limbs to snuggle beside me.

Not many restful minutes passed before a throbbing discomfort in my toes demanded I put  some pressure on the soles and arches of my feet to somehow eliminate the toe-tingling sensation. Next, almost as a matter of routine, pains from the armpit had extended a nauseating discomfort to whole of upper limbs.

Yeah, I suppose it is just another normal day; shortly after 13.00hrs my first resort to painkillers (tramadol 2x 50 mg) since late yesterday evening (on that occasion alongside amitriptyline) as I prepared for my return to the bed zone. Of course by this time I have recourse to my usual pre-meal medication as I anticipate a little lunch-time bite to eat.

Amazing how hard one has to work in order to be busy doing nothing; for now I revel in the music zone, forget my minor worldly woes. For music, love and life, I give thanks. Just the start of another normal day!

ACHES and GAINS

Just when you think you’ve recovered from the roller-coaster ride, a sudden smack of reality makes you realize that you’ve stepped onto the ferris wheel and this time it’s supercharged. Stomach and oesophagus have never felt so close, a moderate underlying nausea takes on a more prominent role. The head feels giddy as if too much time has been spent on the ‘waltzer’, and knees, ankles and elbows throb as if stray balls from the coconut shy have found fresh targets.

You’ve maybe guessed it, I’m talking payback; a reasonable period of (partial) remission had almost persuaded me that life had been restored to normality. As I’m now into the fifteenth year since my collapse, succumbing to ME (myalgic encephalomyelitis), one would think I’d know better than to miscalculate my reserves of stamina. I’m not talking of any undue exertion, just twenty minutes of mowing the lawn with an electric powered mower seems to have knocked me back. Mind you, this additional exertion came at a time when I’m just coming to the end of a course of antibiotics and antimicrobials.

These additional medications had been prescribed as a result of a visit to A&E at the district hospital last Thursday evening, following a flare-up of diverticulitis (and probably gall bladder as well). There have been many occasions recently when I’ve felt as if my moderate ME had turned to a milder form but then, brainfog, alongside excruciating discomfort in upper and lower limbs, and nagging pains variably dispersed around the torso, randomly exert their authority.

Putting those ailments aside, I am fortunate that I am still able to enjoy listening to a wide range of music (via CD, radio and vinyl sources) and am generally able to accompany Piper (our beagle – podenco  rescue dog) and my beloved OH Helen on short evening walks. A few years ago there were occasions when it seemed / felt like an effort too far]just to walk the few yards to the corner of our road. I really miss it when I’m not able to manage these short walks but the love and attention, received and given, by Piper compensates more than a little, and I’m still amazed at the therapeutic value of this charismatic canine.

An additional source of joy is provided by not infrequent visits from our grandson Alexander, now in his ninth month of bringing and receiving an abundance of smiles to the house. Piper is intrigued by Alexander, even though he’s never sure of how to take the infant’s reciprocal interest; the boy stretches out to feel / stroke Piper but has already managed to grab his tail on one occasion as well as being drawn to his ears (always a sensitive part of the pooch’s anatomy).

if only ... ah ... if only

I'm just getting a little fed-up with the misery and deaths caused by the Tories austerity ideology. My health no longer permits me to participate, feet on the ground ... man the barricades style, in protest marches and demos, which only adds to the frustration!

Occasionally, an outburst of heartfelt light verse becomes a necessity ....

hence the following post (already posted - sans background on Mal's Factory) on my poetry blogs Mal's Factory and Archive Mined

if only i could be ... a Tory!

Night and Day and ... on and on

A night, plagued by both restless legs and a kind of strangulated tenderness emanating from the axillary lymph nodes, found me more exhausted on arising from the duvet realm, shortly after 10.00am, than I had been when I got myself into the bed 11 hours earlier. This did not bode well for the ensuing cold and damp morning and afternoon; that sense of foreboding proved quite apt.

Aches in wrists and elbows forced me to lay both laptop and tablet pc’s aside as a nausea inducing hollow ache in the armpits took control. I removed my outer garments and applied elbow and wrist supports in an attempt to alleviate the symptoms. The discomfort intensified ….

Anyway, the following poem resulted from this experience.

Poem and illustration both by yours truly

still rambling on ... and further words

Life races by, with a generous sprinkling of love, received, given and shared as the most vital portion of each day. I am blessed with a catholicity of musical taste, ranging from early music, through classical, romantic, all the way to contemporary; my taste in jazz extends from traditional New Orleans to freeform and experimental sounds. An appreciation of popular music, from the great American songbook, through folk, blues and rock, also provides me with much auditory pleasure.

Admittedly, my listening to music for the past several years is confined to vinyl, cd, radio, mp3 recordings, rather than the “live” experience. Since 2003, when I succumbed to ME (myalgic encephalomyelitis) I have been unable to cope with theatre, cinema, concerts and gigs, and rarely venture far from my home as shopping, travelling, and crowds, easily result in sensory overload. I am fortunate enough to manage an evening walk with our rescue dog Piper, which far exceeds my expectations / abilities from a few years ago. Piper both provides and receives an enormous degree of therapeutic affection and attention.

My greatest blessing is the love and support of my beloved OH, Helen, who manages to put up with me, even through my far too common periods of pain and frustration induced foul moods and vocal declamations.

Anyway, all this is by way of an intention to apologise for the irregular postings on my blog.

Even when postings are sparse, on this particular blog, you may well find some of my poetic utterances on my poetry and prose-poem blog Mal’s Factory – for those who don’t click on links, it is to be found at https://malsfactory.blogspot.co.uk

After the Virgin’s visit – I proffer my apologies to Epson

Regular readers of my blog may well recall my angrily frustrated posts regarding several futile attempts at connecting an Epson photo-printer to my network (three postings between 19^th & 20^th December are the pertinent ones).

You will have seen there that it proved impossible to set the machine up wirelessly, as well as only being able to set-up an Ethernet connection by use of a manually fixed IP address.

Now that my previous VM super hub has been replaced (post of January 27 refers), I have been immediately able to establish a wireless connection to the printer. In response to a customer satisfaction survey from the Virgin, I commented:

the immediate experience, the politeness & efficiency of the engineer on this occasion would have lead me to a 10 rating but I have some misgivings about difficulty of getting through to the appropriate person on the 150 number.

Since this visit some problems that had been going on for a considerable time, and which I attempted to deal with via yr social media account, have finally been resolved. Ultimately, the problems seem to have been with the old hub and, a wireless connection problem with a new printer, for which I blamed the printer’s manufacturer, has also been resolved.

Perhaps a policy of automatically upgrading/ replacing old hubs should be undertaken, as that would have saved me considerable anxiety which could have proved injurious to my already chronic health condition.

For the time being, I am well satisfied with the Epson product and even reasonably satisfied with the Virgin’s broadband service. To Epson I proffer an apology.

INTACT – Virginity Restored

 It is with gratitude that I report the arrival of the engineer, well within the timeframe proffered yesterday. Apart from a phone call this morning confirming the arrangement, and an opportunity to cancel should we no longer require the visit, the engineer also contacted us when he knew that he should reach us within twenty minutes.

Of course we had access to the internet this morning, unlike yesterday, but bearing in mind the catalogue of underperforming, and even non-responding, events we have experienced over many months, I informed the engineer of these intermittent peculiarly slow ethernet speeds. He was as puzzled as I was about the slower speeds; had they been wireless ones it could sometimes make sense but over ethernet links…!!!

Anyway, he duly installed a (virginal) new hub and said that the one we had been using was the Super Hub, not even Super Hub 1; the newly installed hub is the Virgin Media Super Hub 3.

Hopefully, we will have no imminent need to trouble the Virgin’s Customer Services.

The Harlots Regress – just part of Branson's domain

Once again we’re having problems with our Internet connection, as supplied by Branson’s Harlot Media. For a few weeks we were having random brief losses of internet access even though connection to the hub was reasonably stable. On Thursday night the, by now not unfamiliar, “connected, no internet access” message appeared and re-booting the hub made little difference until, as if a miracle had occurred, the connection was quite arbitrarily restored.

Friday morning, on switching on the laptop a few new e-mail messages appeared. On following the link supplied, by a trusted merchant, I was surprised to receive the message that there was no internet connection. My first reaction was to try a different browser only to get the same result. On checking another pc I discovered that we had no internet access. I duly tried unplugging the hub and rebooting to no avail.

Next I contacted the 0800 number to check on internet status in the local area and was informed that there weren’t any problems. After several attempted re-boots I decided to contact the 150 number were they ran some tests after which they told me there were no problems but, then launched a further series of tests which they said would last up to ten minutes. Twenty minutes later, the problem not having being resolved, I once more contacted 150 and eventual was put through to a real live engineer of some kind. After answering a series of questions concerning account name etc, I was asked what date I paid my direct debit, to which I responded that I would require internet access to tell them that.  Another question followed for which I would have required internet access to give the correct answer. Security checks satisfactorily answered, the person on the other end of the line ran further tests and couldn’t find any problem.

At this end, the problem remained the same regardless of which pc or tablet I tried. I was eventually told to reset the hub and hold the pin in for a couple of minutes. Once again to no avail and, by this time the need to move to different parts of the house was playing havoc with my pain prone knees. After about 35 minutes of them running these checks they decided they would send an engineer on Saturday afternoon sometime between 12.00 – 4.00pm. They also commented that our hub was a rather old one, which caught me by surprise as I had assumed that the supplier would ensure that the equipment supplied would be up to the task. If it’s rather old, then surely, that is the ISPs problem and it shouldn’t be left to create problems for the end-user.

Wish I could say that it’s unusual to have any difficulties with our beloved ISP but, that wish remains upon its distant star. April of last year the problem was with our landline telephone, also part of the harlots domain (see: OfHEALTH and TAINTED VIRGINS ) a problem for which their response could only be described as dilatory. 

Later in the year for a considerable time I was getting speeds well below 20Mbps (Ethernet connection) on what was purportedly a 70Mbps service. I had considerable discussions with them regarding this problem via social media but the speeds temporarily improved so I duly thanked them. Not long after this we were upgraded to a 100Mbps service but, even here I’ve had occasions where the speed has once again dropped to the 20Mbps range, when checking via Ethernet connection, at different times of day and night to counter the prospect of it simply being a period of heavy usage. Needless to say, the wireless speeds at these times are even slower.

!9.10hrs: miracle of miracles we have an internet connection – the big question is how long? 

Considering past experiences going back to at least 2007 (see: AVIRGIN FAILS to provide a service ) I would be ill advised to cancel tomorrows visit from the engineer!