ME

ME

Sunday, July 01, 2018

Fermentation and Percolation - Abdominal Joys



Wearied by humid heat, each minor task seems Herculean, even more so when it involves a trip into town. For many years now I’ve been unable to face travelling any distance but, it has become increasingly difficult to steel myself sufficiently for the very short journey into the town centre. Chauffeured by ma belle Helen it’s only a matter of 5 to 10 minutes in the car, but even that becomes quite arduous when the stifling heat seems to amplify the sensory overload of passing traffic and scurrying pedestrians both whilst journeying and on arrival at one’s goal.

Earlier this week I had to travel into town to collect my new glasses, of the spectacles not the drinking vessel kind; a short trip on a day when the heat proved overpowering to me. An additional problem, on this occasion, was a diarrhoeal flare up of my IBS. A quick visit to the toilets at the shopping mall found all cubicles temporarily “out of order”; the subsequent scurrying to a large store, and ride up the escalator, proved somewhat disconcerting as the whole abdominal area felt as if an excruciating fermentation or percolating  process was occurring.

Having reached the necessary facilities in the store both cubicles were occupied as I waited cross-legged and anxious for a unit to become available. As I’ve said before, visits into town are always a discomforting experience for yours truly but, this time, the humidity of the day alongside my turbulent abdominal spasms caused additional distress, on top of a familiar state of sensory overload.

It was really touch and go as to whether I managed to keep the appointment to try on and collect my new prescription eyewear. On the verge of a panic attack, I did manage to collect the optical item although I was more interested in getting back home than giving myself sufficient time to fully check that they were OK. Whether or not they proved satisfactory was of far less importance than the rest and facilities waiting for me at home.

Thursday, June 21, 2018

Of Resting and Sleeplessness – postlude to Stress of the Normal


Come early evening and tiredness verging on exhaustion takes passing hold of me but, as a notoriously bad sleeper, I hoped not to drift off at such an early hour. Of course resting / relaxation, in the form of a movie, was the order of the evening; my usual evening entails the playing of CDs and / or DVDs at some point, rarely anything too taxing on my limited resource of stamina. Admission time; I did sleep through some of the movie but, come the time when my beloved was ready for bed I was feeling wide awake. I wonder if my readers will understand the sensation of being simultaneously wide-awake and yet 95% drained of energy both physically and emotionally.

You will have noted that as I headed to the bedroom, to join my beloved, the signs were not exactly propitious. Those forebodings were proved correct! As I prepared for bed a generalised sense of discomfort / dis-ease overwhelmed me and, the night turned out to be one of tears, screams and bellowed expletives.

Restless legs took control after an initial burning sensation of sore tenderness took control of my toes, and that alongside of a tortuous throbbing ache in both knees and hips. Within a short time, a tenderness of the armpits lymph nodes began to rage alongside screaming aches in elbows and wrists. My mind seemed to be preoccupied with a relentless darkness as I sought for comfort and rest.

The darkness of the room created an overwhelming sense of isolation, in spite of the fact that my beloved was soundly sleeping beside me, almost oblivious to my cries to and against the Almighty as I tossed, turned and struggled to find a state of composure. The blessed, albeit temporary, release of sleep took many hours to attend to my needs.

Another day of rest is desperately sought and, I little care whether it’s opioid, prayer, or straightforward Mother Nature assisted.

Wednesday, June 20, 2018

The Stress of the Normal


So, five days after my birthday I was going to get around to spending /exchanging a couple of gift vouchers. My visits in to town are exceedingly rare, albeit just a few minutes drive (courtesy of ma belle chauffeuse) and scarcely longer via the regular bus service but, today, I had to be in town for an eye test in the early afternoon.

We quickly found a suitable free parking space and headed to the HMV shop, upstairs in the shopping mall. The layout of the store seemed rather random, to put it kindly, and the temperature in there felt more like a sauna and equally airless. Admittedly I was already freaked by the movement of people and traffic, albeit on a reasonably quiet afternoon for a town centre, and the rather bright lighting did little to alleviate my sensory overload.

I managed to find a CD that I’d noted down a few weeks ago, Joshua Redman “Still Dreaming” and also picked up a John Scofield / Pat Metheny album that complemented other CDs & vinyl in my jazz collection. In this same small section of the store I also picked up a cheap CD of Miles Davis ‘In a Silent Way’, my 1969 vinyl copy having been overlaid with a crackling surface after being overplayed on various turntables. Another album, Miles Davis ‘Bitches Brew Live’ performances from Newport Jazz Festival 1969 & Isle of Wight 1970 came at a very low price and was added to my basket. I couldn’t face up to any further searching around and felt an immense sense of relief to get out into the air.

A short amble through M & S demonstrated that it was possible to have a tolerably cool and airy sensation in a store, nor were their lights over bright. There followed a short walk down to the opticians in Boot’s store, where optician and optometrists promptly carried out the necessary tests. Last year the change in my vision was so slight it wasn’t worth replacing the current spectacles; on this occasion my right eye had become marginally more short-sighted and, there were early signs of cataracts developing in both eyes.

In retrospect, I realize that I shoudn’t have attempted to tackle more than one task during a visit to town; having spent much of my working life in or close to a town city centre, since 2003 I have rarely been into town more than a couple of times in any year. Any future purchases of CD, vinyl or DVDs will be done online.

Thursday, May 31, 2018

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!

Friday, May 18, 2018

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!

Thursday, May 10, 2018

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).

Tuesday, March 20, 2018

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!


Thursday, March 15, 2018

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






Tuesday, February 13, 2018

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