A Quick And Yet

Painfully restless nights have been showering me in abundance of late; how I yearn for those times when bed-rest actually proved restful and, one had the joy of waking refreshed to the new morn, albeit assisted by a strong caffeinated beverage.

My beloved OH generally manages to sleep soundly, unperturbed by the thrashing of my restless legs or the wildly uttered expletives, emanating uncensored from my brain out through my mouth, as the aches and pains attempt to take total control of limbs and torso.

A supply of wrist, elbow, shoulder and knee supports remain in attendance by both bed and armchair side, never quite sure when they will be summoned into action! Much the same applies to the omnipresent box of medications. And yet …

Oh yes, there is fortunately an “and yet” addendum to the above summation of dis-ease. Enjoyment, revelling in the music I listen to via vinyl, cd and the airwaves; movies we watch both broadcast and via dvd and even, dare I utter, VHS tape. Piper, our wonderful hybrid hound, some part beagle, some part podenco (and whatever else) went into this wonderful creation that provides entertainment, love, frustration, and simple amusement. I am fortunate that at present I am able to manage an evening walk with the boy (canine variety) as we let him run freely down squirrel alley, through the wild verges of the local playing field and the adjacent grass tussocked, cow parsley, tree and sapling sprinkled, hound scented haven.

This year the birds have returned to our garden feeding stations, nothing exotic but a rewarding mix of blue tit, coal tit, great tit, house sparrows, goldfinch, starlings, collared doves and also wood pigeons, jackdaws, and bullying magpies. It has, once again, been a delight to watch the always hungry, newly fledged starlings being fed by their elders.

There’s just so much to enjoy in the world around us, just wish the sundry bodily ailments would take a vacation!

Flummoxed by Circumstance

The heat and humidity of the past week have certainly, but unsurprisingly, had a detrimental effect on my relative state of well-being. Even before the hottest day arrived, I was already suffering payback, for over-exertion, in my desire to optimize the length of time & distance spent walking our gorgeous dog Piper.

Already impaired by that payback I'm somewhat flummoxed when trying to determine how much of my current ailments, tenderness of lymph nodes (both axillary and cervical), aching bones feeling somewhat as if they've been hollowed out and lined with lead and undergoing extreme gravitational tugs of war, are a continuation of the earlier payback and how much solely a response to climatic conditions.

I've reluctantly had to resort to supports applied to wrist, elbow, knee, ankle, and even tubular bandages covering most of my arm. I don't know whether this use of tubular bandage serves as some kind of lymphatic massage but, it certainly helps. Unfortunately, alongside the physical ailments, a re-active depression has had a deleterious effect on my ability to respond rationally to any minor physical or emotional setback.

Yesterday morning as I lay on my bed, chokingly sobbing, Piper ran up the stairs, placed his head beside mine and lay with me for a few minutes; that in itself demonstrated that his presence in our life proves therapeutic. I have actually managed a couple of shorter walks with the boy in the cooler parts of the evening.

Piper is certainly becoming more confident since joining our family, barking a confident disapproval of large darkly coloured dogs encountered on his walks, yet offering friendly sniff-based greeting to many other canines that he had at first cowered away from. Judging by this behaviour, I suspect that the scattering of scars on head and torso, received whilst in the pound, were caused by a really large dark coloured canine. He has certainly gained a good knowledge of our nearby footpaths and bridleways and seems to let his walker know when he's ready to head back home.

his mistress's scent

Piper

Piper

Although I spend much more time with the dog at home, than my beloved OH manages (owing to other commitments), she is definitely his dominant other. Fortunately, he now spends less time dolorously searching for his mistress when her other duties call and, this weekend he has been left solely in my charge, as his chosen other ventured down to the south of the country for a couple of days and nights. Now, after 10 hours of Helen's absence he has just been casting a few longing glances at the door of the lounge but, then goes trotting around the garden, looking for possible sources of mischief. On returning to the house he welcomes my attention before checking out the door once more, anxiously awaiting his mistresses return.

These days I hate, almost fear, spending evenings and nights alone in the house, feeling rather vulnerable, due no doubt, at least in part to my sundry physical (and reactive emotional) ailments but, I'm sure that Piper's companionship will help.

Times they are a changing as the Piper calls

A time of change; as all things turn, there is always a return made, an apparent centring to what has been a slow created essence of one’s being! Quite why I scribbled down that opening line, I’m a little uncertain but, I am aware that certain changes, so rapidly, assimilate to one’s sense of place that they swiftly seem as if they had always been!

We have swiftly adapted to the revamped home, following the many weeks during which the extension work, chez nous, took place. Somehow it seems as if the adaptations had been made to accommodate our family’s latest arrival. As yet we await confirmation that we will be able to adopt our foster boy ‘Piper’.

Piper is a beagle and (assumed) Labrador cross, he certainly has many of the traits that are typical of beagles, always following scents of potential prey wherever he goes, and he has an insatiable appetite for food. The beagle trait is unmistakeable in the head and his colouring is quite like a less saturated version of a red fox Labrador.

Having spent five years in a pound in Spain, where he was bullied and attacked by other dogs, he has a slightly nervous disposition but, has settled in wonderfully into our household. At first he seemed to have a wariness of homo sapiens males, much preferring the female of the species but I was surprised how quickly he accepted me. Piper is definitely a people dog, and has swifltly re-organised the days for ma belle et moi. He’s just so endearing!

Ma Belle generally takes him for morning walk before he has his first meal of the day, so she’s getting the most exercise she has had in quite sometime, sometimes I accompany them both, for at least some of the time, in the evening! Thursday evening I actually managed the longest walk that I’ve had since 2003, and only had minimal payback in terms of a minor degree of shatteredness. Admittedly the back support came into play last evening, as I’d sprained the muscles on the left hand side of my back, probably caused when competing for space in my favourite armchair!

In the morning it’s wonderful to be greeted by the bounding energy ball, that is Piper, as he races upstairs and pounces upon the duvet,  expressing his joy in being here to share my life. Usually a quite boisterous greeting but, this morning, as if acknowledging my back-aching jadedness, he just flopped beside me, forepaws placed gently over my arm.

We are fortunate in having a reasonably well secured, sizeable garden which he always enjoys exploring, in his preparedness to see off any trespassing felines. Just like us he enjoys a reasonably sustained chilled out flop, between bouts of exercise and/or feeding.

In the eight / nine days he has been with us I’ve not needed to resort to wrist, elbow, or shoulder supports, nor have I needed to increase my pain-killer intake. If being part of our family is as therapeutic for him as it is for me, we are both well and truly blessed. My step-daughter Beth who lives, with her four cats, across town is totally smitten with the boy and happily proffers her dog walking services for Piper.

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.

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.

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.

 

                                          

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.

  

Hopefully - just a little phase I'm going through!

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.

back to NORMALITY?

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.

minor travel major travail

Just where is that emotional stamina hiding; come to that, it would be useful if I could uncover a resource for topping up my rather limited levels of the physical variety. After a short trip across the Pennines, about which more later, even my already constrained ability to concentrate on any sustained reading has gone into abeyance. At least I’m hoping it will return! No matter how much I enjoy looking out onto the garden, the heavily overcast and frequent rain-sodden days do little for one’s morale.

 

After a morning of extremely vividly disconcerting dreams, I finally felt sufficiently alert to remove myself from the bedclothes at around 11.15am, thirteen hours after availing myself of their embrace. As my beloved doesn’t go to her place of employment on a Wednesday it made the rest of the day more bearable. By about 4.30pm I felt it necessary to rest my eyes, at which point ma belle enquired whether I needed to lay myself down on the sofa. At the time it didn’t really seem at all necessary but, within half-an-hour my legs began to suffer a dull throbbing ache, feeling as if they’d been waterlogged.

 

Finally I had to admit my OH was right and, I really did need to lie down; no sooner had I reclined, in supine posture, than my wrists began their far too familiar nagging ache requiring a swift application of splint supports. Just another ordinary day!

 

                                                  ***

 

Now comes the report on that trans-Pennine journey, although, in terms of mileage, it was a short drive, to me the outward journey seemed a far too protracted arduous nightmare. Spastic colon, and acute diverticular discomfort set the tone of the adventure; within the parameters of a 70 mile route, I most urgently required a loo break on three occasions, the first of which required a diversion from the route we were travelling.

 

The SatNav redirected us, via the Old Skipton Road, across desolate sodden moorland. This route didn’t help at all as a kind of agoraphobic panic attack overwhelmed that attention which had previously focussed on my painfully aching abdomen. When we eventually arrived at the hostelry where we’d be spending the night, it was encouraging to see they had at least four draught ales on offer. As we approached our upstairs accommodation the heat in the hallway proved overwhelming, as was that which greeted us in the room.

 

That evening we attended a wedding party, the purpose of our visit, at a nearby Jacobean venue. On arriving at the venue, I managed ( whilst leaving the badly lit car parking space) to trip on a protruding step as ma belle and I sought the relevant hall entrance. The entrance was attained via an ill lit awning tent and, once again I tripped as my foot fell from the edge of the footway.

Not a good start; since my days as a union steward I’ve been well aware of health and safety issues, and the ill lit irregular causeway would certainly have been a major concern. As I’m prone to giddiness, and an associated fear of falling (such that I will only take a shower when my beloved’s around), I wasn’t able to relax at all.

 

Inside, the venue was disconcertingly sprawling and, we failed to find the quieter lounge. We spent best part of an hour, but seemed much longer, sat at a table in the bar area chatting with one or two family members. Just the noise of chatter became overwhelming; part of my illness means that I find it difficult to cope with crowds or noise so, really, I was in the wrong place. My total alcohol intake was less than half of the pint of ale I’d imagined I would enjoy.

 

Ten years on from succumbing to this condition (moderate Myalgic Encephalomyelitis), it becomes increasingly hard to understand that I once, not only coped with but, whole heartedly, enjoyed a quite gregarious lifestyle, pubbing, clubbing, politicking, wining and dining, leading  house groups and more!

 

Back at the inn, the landlady turned down the radiator at our request and supplied us with an electric fan and opened the skylight, the only window in the room, to allow some air to circulate. Most of the night was spent restlessly on top of the bed; music from nearby filled the air until 2.00am after which I became aware of the swoosh of traffic, presumably from the motorway. Further distraction was proffered in the form of other guests returning to the inn, as the floorboards groaned and roared their disapproval of human footfall. A worn out washer on the hot tap in our en suite, erratically appliquéd a kind of water torture onto the other aggravating layers of distraction.

 

Having missed out on food the night before, I was looking forward to breakfast but even this hope remained unfulfilled. Still feeling rather stressed, and upset by and commenting on my trip up experience of the previous evening, I interpreted a nervous smile from Helen’s brother as a sneer and duly threatened to deck him. At that point I quit the breakfast room.

 

Our journey back across the Pennines was a far happier experience, travelling predominantly on motorways advocated by the disembodied voice of the SatNav.

Changing Conditions

 

Sometimes conditions affect one in unexpected ways. I found it difficult to cope with the heat on the warmest of our summer days, flagging with fatigue after less than half-an-hour sat out in the garden, in the shade of a parasol. The only answer was to retreat into the house, draw the curtains, and switch on the
oscillating fan.

 

As daytime temperatures have cooled down, and an occasional chilly dampness returned to the equation, some of the old familiar aches and pains have decided to re-inhabit my corporeal being. This correlation of events, leads to a suspicion that these aching components are perhaps more to do do with arthritic and rheumatic twinges than the underlying neurological condition. No sooner have I proffered that suspicion than I recognised that a different interpretation was also plausible.

 

As more moderate temperatures returned, the temptation to tackle a few additional ‘light’ gardening and household tasks was all too easy to yield to. My main problem is a tendency to only listen to my body when I’ve almost drained my low stamina reserve. The trick of ‘pacing’ is to always keep a little stamina in reserve, otherwise any further exertion almost inevitably results in some kind of payback.

 

In the course of the past few days, a light giddily disorienting headache, accompanied by sudden onset pallor has been a recurring theme; my erratically disrupted sleep pattern (during my required dozen hours of bed rest) does little to alleviate such irritations. At other times the sense of being ill-at-ease within my own skin, a sensation that the skin is too tightly constricting the flesh of torso limbs and digits, proves grindingly nausea inducing.

 

I am thankful that, at present, the gnawing tenderness of glands under the jaw and in the armpits is only quite rarely experienced.

 

My beloved ‘Bright Light’ has been enjoying a holiday from the workplace, last week and this, but finds herself needing plenty of rest so, whilst I’ve always revelled in her company, we’ve been kept busy keeping an eye on each other, each making sure that the other doesn’t overdo things. My life has never felt so complete as it has in the time since meeting and marrying ma belle; her faith and loving disposition makes me feel privileged to know her.

Mal murmurs again

My latest post -
down and out or up and at 'em -
can be found on 'Mal's Murmurings'

apologia

Yet another afternoon spent in the garden, this time in the shade of a parasol beside the pond.

 A couple of weeks ago I’d never have dreamt

of making such a statement having undergone an extremely protracted

autumn and winter of cold and damp weather,

  the wet aspect being but a pale reflection of last summer’s weather.

 In the course of the last couple of weeks we’ve been blessed

 with many warm sunshiny days which inevitably

turned ones thoughts and footfall towards the garden.

 

The preceding paragraph, or words to similar effect,

 were to have been the opening of a web log posting a fortnight ago but,

much to my surprise, I’ve now been able to spend

 even more time in the garden although the weather has once again became more changeable.

I’m still not able to cope with very warm humid atmospheres;

 it’s largely been a matter of choosing the appropriate times and circumstance

 to venture out. I’ve been taking a few snapshots of aspects of the garden’s flora and fauna and,

undertaken some gardening chores

without exerting myself beyond reasonable self-imposed* “pacing” limits!

 

On many occasions, feeling a little guilty

about neglecting the blog, I’ve settled down beside an inert keyboard

with every intention of resuscitating it

but the necessary emotional stamina seems to have been

in extremely limited supply.

 

++++++

 

 

*more honestly “health-imposed” but one likes to feel, to some extent,

in charge of one’s own destiny.

 

 

 

sunshine and celebration

Sometimes it seems as if the day is almost over before I even get started. In one way this is good, it’s generally a sign that I’m appreciating each waking moment, so much so that it’s sometimes a real struggle to stop myself resenting the earth’s rapid orbit.  Recently we’ve been sighting a bright glowing orb in the sky, bringing a little warmth and elevating one’s spirit; after weeks of dull wet days the sunshine has proved most welcome.

As my beloved took a few days off work, around the time of our wedding anniversary, time seems to pass even more sweetly as we enjoy each other’s company. Visits to Café Culture, for a cuppa and cakes, and Al Bivio Ristorante helped heighten the sense of celebration. We also paid a visit to the garden centre at Otley where I acquired a new bird feeding station for the garden, finally using the vouchers that I’d received for my birthday last June; although the centre is less than ten miles away this was the first time I’d really felt up to spending a little time there browsing around. I especially enjoyed looking at the reptiles in the centre’s pet shop.

Meantime, I’ve acquired 5 more golden and 5 white cloud minnows which, having first spent ten days in my quarantine tank,  have now been added to the Main aquarium.  It’s really quite strange that, having introduced my beloved OH to blogging. I have to check out Helen’s blog to see what I’ve been up to!

On Wednesday I had an appointment with my GP, a lesion on my leg, which I’d been attempting to alleviate with a 1% hydrocortisone preparation, wasn’t showing any improvement (quite the opposite in fact) so I was going to see the doctor who specialized more in skin disorders. He was quite baffled by this particular sore spot, it was quite unlike anything he was familiar with, definitely not discoid eczema or Bowens etc;  so he prescribed a potent topical corticosteroid (Mometasone Furoate) which I’ve to apply once a day for a fortnight. He also checked a small occasionally weeping lesion on my chest which he says is a basal cell carcinoma and has duly referred me to the District Hospital. [I’ve had previous experience of having a bcc excised – see ‘Sunshine and Blanket Stitch’] If the ointment applied to my leg hasn’t healed the lesion he suggests I also have the specialist look at that when I have my appointment for the bcc!

Another positive outcome of the visit was to confirm that the recent X-Ray of my hips, following a quite prolonged period of chronic pain, apparently emanating from the right hip, showed no abnormality on the right hand side but, it did show that I had arthiritis on the left-hand side. Fortunately, after copious doses of tramadol & co-codamol the pain had eventually abated!

I received a further acupuncture treatment on Thursday and, I’m no longer averse to expecting resultant miracles. Life goes on and I’m determined to enjoy it – if only I could discover some refreshing sleep all manner of things would be well!   

for this ordinary day ...

What a relief; today I feel much more my usual “better-day” self! Yesterday was the kind of day one always hopes to avoid; from waking-up, after a familiarly intermittent non-refreshing pattern of sleep, and throughout the whole day and evening I felt numbingly exhausted, despite the fact that the excruciating pains in my hip and left limb were quite markedly in abeyance.

 

Last night, as I [un]settled down to sleep, that once far too familiar painfully hollow sharp bruised ache in my left arm took over. Having already taken painkillers, I duly applied a wrist splint which seems [occasionally] to alleviate the nauseating discomfort. A nausea inducing dull tenderness in the armpits soon became apparent; I had to remove my [not at all tight fitting] pyjama jacket which began to feel as if it was constricting armpits, upper arms and shoulders.  

 

The minor setback followed eight days in which I had felt the brightest I could remember for a considerable time. Concentration, alertness and general sense of wellbeing were on a, far too rare, high consequent upon the acupuncture treatment received on 31 January.

 

I feel really blessed in having visits from a physiotherapist, trained in both Eastern and Western models of acupuncture, who has considerable experience / understanding of ME [Myalgic Encephalomyelitis] both as a practitioner and a fellow sufferer. Being enthusiastically athletic, it must have come as quite a blow when she succumbed to this wretched neurological condition. Working as a physiotherapist, she had noticed the detrimental effect that exercise was having on some of her clients; at the time I doubt whether there was any inkling that this could become part of her own experience.

 

Today has been a wonderfully relaxed time in the company of my beloved, exchanging sweet nothings, and catching up with some recorded TV programmes. For this ordinary day – I give thanks.

and I'm feeling fine ... ailments excepted

Oh, the sheer delight of a nice warm shower; there are so many things we tend to take for granted, thus depriving oneself of that real appreciative thrill. I admit to having gone through quite a long period of avoiding too frequent a shower, having found the effort involved far too enervating; by the time I’d towelled myself dry I needed a further bout of bed rest.

The acquisition and installation of a secure shower seat alleviated some of the more dauntingly exhausting aspects but, even then, when I stand up my sense of balance (within those steamy environs) is insufficient for me to feel at all secure. Fortunately, my beloved OH is there to proffer assistance at my now more usual, although spasmodic, evening shower time.

******

Anyway, last evening’s shower proved especially beneficial; a most recently acquired acute pain extending from the neck and upper spine across the shoulder blade had made it difficult to even put on my shirt as I rose from my bed. My beloved applied generous amounts of ibuprofen gel all around the affected area. An attempt to lay back down proved even more painful so I persevered with getting dressed as, in any case, ma belle chauffeuse (aka Helen, ma belle, my OH, my wife, my lover, my bestest friend) was preparing to take me to the hospital for an X-ray and blood tests. The shower certainly alleviated the shoulder pain, even though it rarely seems to help sundry other painful ailments.

It seemed strange hobbling into the X-ray room posture made awkward with the shoulder pain, as the area to be photographed was my hip! What’s the connection, you may well wonder; so I proffer an hypothesis. On Tuesday evening, the night before last, ma belle et moi ventured out to the branch labour party meeting at the Catholic club. The meeting was due to start at 7.30 and, we duly arrived in good time on a blustery rainy evening. Unfortunately the doors of the venue were not due to be opened until 7.30 so we had a little time spent exposed to the elements. By the time we’d got in and sat down, my hip and lower limbs felt extremely uncomfortable, so I had to keep shuffling around to try to get comfortable; I suspect the changing postures involved, in  these hip-pain alleviating manoeuvres, were responsible for unusual stresses on the shoulder.

******

This afternoon the physio arrived chez nous to apply the magic needles. As I relaxed a beautiful warm glow seemed to permeate my limbs, after which I experienced a wonderful carefree rest in my favourite supportive high back armchair. Over recent years acupuncture has proved a great source of pain reduction and stamina boosting for me, a convinced sceptic until I tried it!  

And, I’m feeling fine!

simple pleasures and a heartless regime

Sometimes, far too frequently in fact, I forget to count my blessings.

Quite recently I was able to enjoy Christmas to a far greater extent than has been the case for several years past; I actually managed to pace myself reasonably well, with a minimum of twelve hours bed rest per twenty-four. Medications and grace combined to keep the worst excesses of pains, aches and sensory overload at bay; even my limited reserves of emotional stamina held out well for this time of grateful celebration.

In the past few days I’ve crashed a little; sudden bouts of fatiguing exhaustion during daytime hours are (almost invariably) followed by restlessly discomforting nights. At least I’m able to do a bit of reading, even though my concentration wavers considerably more than in days of yore! Most importantly, I’m able to enjoy the activity without it seeming a chore.

I always feel privileged to love and be loved by ma belle Helen, just to hold and be held by each other brings with it a tremendous sense of wholeness, going a long way towards alleviating that sense of isolation arising from a greatly restricted ability to socialise in the wider world since the onset of this debilitating illness.

Sat in a comfortable supporting armchair, I can watch all the avian activity in our garden; in recent days we’ve had plentiful visits from coal, blue, and long-tailed tits, alongside the sparrows and starlings. Their antics are always a delight, as are the regular sightings of red kite, gracefully riding the thermals overhead.

As a recipient of a state pension, alongside a couple of small company pensions, I am fortunate that I no longer have to be dragged through the arduous demeaning benefits medical assessments, that so many sufferers of chronic illnesses – mental or physical – are so unfairly forced to endure, adding further stress to their already vulnerable state of being.

I am truly blessed, having food in my belly, a roof over my head and, we are still able to afford to keep ourselves warm (despite the profiteering greed of the privatized utilities). These things, that should be a right, are increasingly becoming a privilege under a heartless ConDem regime.   

To Sleep Perchance ...

Just what’s going on in my body; I neither understand nor have the appropriate vocabulary to realistically express it. Sometimes I can feel mentally/emotionally well whilst my body feels excruciatingly below par; I didn’t think this was supposed to happen! At other times, whilst my corporeal aches and pains are in temporary abeyance, I can feel emotionally drained. I sometimes wonder if the sundry prescribed medications I take can become part of the problem.

I regularly resort to mebeverine (antispasmodic) to deal with my spastic colon/IBS; at other times a little motility aid such as domperidone (dopamine antagonist) is required. Alongside these I always have to take lansoprazole (proton pump inhibitor) to tackle a major gastric reflux problem.

I have recently been taking a small dose of sertraline daily, to deal with an anxiety/reactive depression issue, whilst at night 30mg amitriptyline is prescribed to assist (theoretically) with sleep and pain management. Currently, I also need to take 100mg tramadol a couple of times a day to deal with muscular and neurological pain.

That little diversion, into a pharmacopoeia, was not intentional; it just seemed easier to scribble down than a description of how exhaustedly crap I’d been feeling in the past couple of days. Sadly I’ve had to forego a couple of Christmas social evenings this week, both of which I’d been looking forward to; mind you, that simply reflects my general lack of physical and emotional stamina since 2003.

When I do manage to sleep, I’ve recently been having very vivid audio visual Technicolor dreams, not infrequently drifting from ultra normal situations, with many familiar faces, into the edge of nightmare territory. In one such dream friendly banter amongst friends took an horrific turn as an ogre broke into the room. The ogre, which I understood to be a “Cam-Moron”, had a smug superior grin as his cheeks blushed with roseate anger. “We’re going to put all you lot down”, he sneered. At that point I woke up to a fuller realization of what the ConDems were doing to the poor and vulnerable! 

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this post also appears on 'Mals Murmurings' under the title 'We Are Such Stuff ...'

of bugs and fishy business

Nausea, dizziness, diarrhoea are sadly all too frequently experienced by yours truly; as a result the symptoms have to reach some crisis point before I’ll seek medical help. Such was the case towards the end of last week when a bug really did lay me low. On the Wednesday I’d felt giddily disorientated from the moment I first attempted to raise myself from the bed and get dressed; for most of the day I rested on the sofa and, by mid-afternoon, managed to eat a small portion of poached smoked haddock in spite of the onset of nausea.

 

Later that day I was due to carry out the second treatment of my aquarium for white spot disease but, reluctantly had to delegate this task to ma belle OH. It really is quite a rigmarole changing 36 – 40 litres of water every five days, vacuuming the gravel before renewing the treatment dosage. Fortunately, today, I felt up to the task that being my primary workload!

 

By Thursday morning even sipping water made me feel like retching and just the thought of food was enough to make me feel queasy. My beloved, from her workplace, had ‘phoned my GP practice to see if she could make an emergency appointment. The duty doctor called her back and said that it could be a reaction to the sertraline, which had been prescribed for me on the 17^th October [the day I wrote my “Breach of Composure” post], at first suggesting that I should maybe try half a tablet, but then arranged for me to see a doctor later that day.

 

Having been chauffeured and hand-delivered to the surgery door by ma belle, the doctor I saw thought it unlikely that the reaction to the medication would have been so delayed. Having checked my temperature, blood pressure, and examined my acutely sensitive abdominal area, she surmised that I’d caught a bug and prescribed rest and plenty of fluids. She was more concerned about my lack of fluid intake rather than my lack of appetite (for food), she prescribed domperidone to help counter the nausea. It feels really great to have much of my appetite restored, even though my stamina reserves are even more depleted than usual.