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).

HOUDINI HOUND - The PIPER Chronicles

HOUDINI HOUND brings on payback but provides much therapeutic HEALING – the PIPER chronicles

Wednesday night was a time of moderate payback for the additional (voluntary) exertion / exercise I’ve been taking since the adorable Piper came into my life. Generally though, the dog is proving almost miraculously therapeutic, enabling in me a calm which I’ve not experienced in more years than I care to remember, as well as taking longer walks than I’d been able to manage in the preceding 13 years.

The form the payback took was not at all conducive to sleep, not even of the far too prevalent non-refreshing variety. A simple flick of the bedsheet across the top of my toes, or even an individual digit, caused an unwitting flailing of lower limbs and a hard to suppress need to scream out a string of expletives. Big toes were overwhelmed with a throbbing ache, whilst the full complement of subservient digits tingled with what felt like a potent electrical charge.  During Thursday I experienced a not insignificant degree of confusion and reduced power of concentration.

To be perfectly honest, I’m quite relieved that the payback has remained relatively mild! Our little Piper seems quite sensitive towards my de-energized state of being, leaning in to me rather than demanding a deeper rough & tumble commitment.

I’m constantly amazed and charmed by Piper’s character and personality, especially the winning way in which he commands one’s attention and affection. The sudden burst of energy which emanates from an apparently dormant canine must cause terror in any feline character that dare trespass on his territory, his home patch. The vigorous way he wags his tail, when greeting his people, is a sight to behold – more like a full body shake. I’m pretty certain that a simple greeting, from Piper, expends far more energy than any (so called) long-life / heavy duty battery could ever produce!

His late night bounds into the garden will occasionally produce a basso profundo woof that belies the originators size! Sometimes it may be a feline intruder, which swiftly flees from his territory, at other times he’s somewhat bemused by the little sphere of spikes which appears as he approaches a strolling hedgehog. The boy seems to have an inbuilt hedgehog sensor and, as a result we’re discovering that our long term efforts at developing our garden a wildlife friendly environment is proving successful. On one occasion I observed a couple of juvenile hedgehogs, snuffling along, at one edge of the longer grass area whilst Piper found another source of interest at the opposite side of the same area. Quite remarkably he responded to my wilfully distracting call, made to lead him away from the juvenile ‘hogs path, as he came and trotted by my side, tail held aloft, back into the house.

After he’d found it possible to utilise a garden bench as a springboard, to surmount a quite high fence into our neighbours garden, an immediate re-siting of the planter laden bench was essential. The amazing thing is that he gave us a demonstration of how easily he’d managed this astounding feat shortly after returning home from the scene of his accomplishment.

The day following the great escape, Piper demonstrated, to yours truly, that with a clearer run-up to that section of fence he was already close to making another leap to freedom. Immediate DIY work was called for, as an old Mothercare fireguard was quickly dis-assembled and it’s component parts utilized to add additional height to that particular section of the fence. Our bundle of boundless energy has certainly brought much added colour and joy into our lives.

       

                             Piper tries out his new bed

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.

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.

  

Pacing can be a Pain

 

 Since yesterday lunch-time the discomfort has become quite extreme, in fact I don’t know why I try to soften the sentiment by substituting the word discomfort for what has ranged from excruciating pain through agonizing, nausea inducing, aches.  For several days back pains have flared up, presumably related to the herniated disc, to the extent that it has proved virtually impossible to find a comfortable position seated, reclining, or attempting to shuffle about, for considerable periods of time.

 

For a couple of days my lower limbs have had that achingly rubbery feel that I always used to associate with a bad bout of flu. Cervical and axillary lymph nodes, in neck and armpits, have once again taken on a most disconcerting tenderness, as if striving to draw my attention away from those aches that seem to flit between elbows and wrists. Gosh, as I write this down, it’s just dawning on me what bodily excitements I bear witness to.

 

Chronic abdominal spasms, and erratic spasms of irritation in the upper digestive tract, make almost perfect companions to the not infrequent chest pains. It’s almost as if some great controller has decided that no part of my torso or limbs should feel lonesome; I must admit that my body’s erratic thermostat, with the dance between overheated and over-chilled clamminess, is beginning to feel absolutely normal.

 

A couple of weekends ago, I was so proud of my achievement in attending two events

of moderate socializing on consecutive days, but within thirty–six hours payback had well and truly kicked in. On the Monday, after the social weekend, it came as something of a surprise to hear my GP utter those unexpected words, “don’t push yourself”. When it comes to an illness like ME, there couldn’t be any more sensible words of warning. Trouble is, on those rare occasions, when one feels able to manage a modest amount of exertion, it’s not always obvious where the boundaries lie.

 

Pacing is so vital but, at times, one seems to be set on an almost interminable learning curve.  

much ado about little

The current pleasant weather could prove dangerous!

Yesterday afternoon found me briefly pottering about in the garden; this morning I once again exerted myself (a little) tidying up and, transferring a wonderfully rich humus from the bottom of the composter into a barrow.

At that point it suddenly felt like I was about to hit the wall; it was almost as if I could hear the muscles groan through their sluggish response to every bit of exertion.

Come the afternoon I even ventured out for a little walk!

It would be nice if for once there's no payback.

swings and roundabouts - a modicum of payback

Yesterday, the weather proved too enticing to resist so, having acquired a few more plants for the garden in the morning, I overcame my natural caution regarding over-exertion and created an additional (mini-)border as well as some plantings in pre-cleared areas of the extant ones. This task was left until later in the afternoon when the earlier heat had subsided a little. Once the plantings were completed we retreated to the house to relax.

Mid-evening the doorbell rang as some children had spotted a hedgehog under Helen's car, and they didn't want it to be accidentally run over. The hedgehog in question had meantime moved across to some decaying leaves in a corner of our pebbled forecourt,seeking shelter; to ensure that it didn't dash out onto the road, I picked up the hedgehog and took it to shelter in the undergrowth at the wilder end of the garden. The creature remained on the spot where I placed it for a few minutes before scurrying off, much to my relief, into deeper cover.

Although extremely / achingly exhausted before retiring to the bedchamber, sleep proved very difficult to come by - discomfortingly patchy at best, with erratically random bouts of acute nightsweats as a keynote. By mid-day (today) my whole being was a patchwork of nausea inducing aches and pains, abdominal, glandular and muscular. Abdominally, in terms of discomfort and activity, it seemed as if mild diverticulitis and IBS had conspired to optimize my sense of dis-ease.
 
Today has, of necessity, been a time of great idleness chez nous as I have little desire to exacerbate the situation.

... and RELAX (again)

Another afternoon in the garden, primarily with sun hat donned, relaxing in the shade of a parasol. Once again ma belle donned her gardening gear, on her return from morning worship, and has been tackling further border areas in an attempt to slow down the ground elder's rate of advance. Mid- afternoon I decided to load a wheelbarrow with the rich humus from the bottom of our compost bin and duly scattered it across the border that was yesterdays scene of Helen's battle against the pernicious weed (ground elder).


My body informed me that it was time to quit the exertion routine by the time I'd dealt with that one barrowload; I don't really intend to risk any dispiritingly excruciating post-exertional malaise. Relaxation is also the theme for the evening; having watched 'Songs Of Praise' with my beloved she then headed off to Hampsthwaite where she's taking the service this evening and, on her return, we'll probably switch on ITV for a bit of escapism compliments of "Lewis".


I rejoice and am glad in this day the Lord has made!

Of Pain Creators, Pain Pathways and Pain Killers

 
One almost has to admire the blatant way that the Tories, both blue and orange varieties, demonstrate their disdain for the poor and vulnerable in our society; if only we had a political party prepared to attack privilege, and the wealth stealers, with equal fervour. Problem is these thieves, curiously misnamed "wealth creators", are held in such high esteem by the Tory controlled meejah (which seems to set the agenda for all parties with serious parliamentary aspirations)!

Strange how they have so much respect for the people who'll go to any lengths to avoid paying their fair quota of taxes; surely their readiness to pay up would be a true demonstration of their patriotism. The poor have no choice, patriots or not, the PAYE system ensures that they pay their full whack and, if they have the misfortune to succumb to any illness, or be made redundant, find themselves treated as scroungers and/or criminals, by the meejah, for daring to claim the benefits to which they are entitled.

Rant over for now, indeed it wasn't intended - it just sort of spewed forth but, I'll stand by it. Don't know exactly what was intended when I opened 'notepad', just felt it was time to update my blog!

Apart from a familiar sense of shatteredness, last Friday's exertions seem to have taken their toll on my spine. I don't know if it's possible to re-herniate a disc, one which hadn't given too much gyp in recent months, but I've once again started to experience quite acute (transferred) pain, in fluctuating increments - from about 3 to 8 out of 10, through hip, thigh, knee and ankle of my right lower limb. It began on Friday evening with a sensation of the lumbar vertebrae locking up but, I can't say for sure when the transferred pain in the lower limb began; as a matter of daily routine, I experience painful spasms  emanating (apparently) from an area of the calf muscle immediately behind the tibia.An early morning fix of tramadol helps to control this but, more frequent doses of the same med are only minimally reducing the acutely stabbing pains that seem to travel on a neural pathway from hip to ankle.

and today the tears

And today is the day the tears start flowing. Suddenly, for no apparent reason, a tingling around the eyes and a sense of melancholy. I brush the tears aside, take my courage in both hands (and legs) decide to try a little walk up the road. For the last couple of days such efforts have proved abortive but, it's worth a try; anything's worth a try just in an attempt to overcome this randomly imposed suffocating sense of isolation.

I suspect that the antibiotics, prescribed on Saturday, are having an adverse effect on my already bothersome intestines; even attempting to consume a hot beverage seems like a (time) trial (of the how long before I start feeling nauseous variety). Yesterday seemed somewhat better than the previous day, less of the floatingly giddy light-headedness and, managing infrequent snacks as and when the desire arose. So, things are improving but, after a better night's rest, I've sunk into this pit of moroseness. As I write this, I'm laughing at my pitiful self; in attempting to express how despairingly low I'd started to feel my spirits are somehow lifted.

I'm sure some of the cause is the waiting game, waiting for the gastroscopy and then for the results, awaiting notification of when I'll be in to have the rodent ulcer excised but, most importantly, like a BP CEO I'm wondering when I'll get my life back! The fact that I've scarcely enjoyed a really restful nights sleep, since my overnight hospitalization five weeks ago, certainly doesn't help.

Anyway, I set off for my brief walk and met an old friend. Immediately the "how are you" question was asked the tear ducts shifted into overflow mode and, I had no option but to amble back home. Called my beloved on the telephone, as she was putting in a few extra hours at work - Wednesday being her usual day off - and thankfully she just finished off her current task in hand and headed homewards. Ma belle has arranged, and will be chauffering me to, an appointment at my GP's this afternoon. I feel as if a bit of reactive depression is setting in, a response to the sundry ailments, and probable reactions to medication, that have beset me over the past several weeks.

At least with ma belle by my side, and the old faithful walking stick in my other hand, I gathered the confidence to stroll up to the local shops, the furthest I've ventured for the past few days, without feeling too overawed by the entailed exertion.

Tomorrow my physio is due to visit me to administer the therapeutic needles and, I'm hoping that will aid the relaxation process both physically and mentally.

Transitions

Yesterday, a (temporary?) reprieve from a snow-laden garden brought out my latent - albeit limited - energy reserve as I manfully retrieved a spade from its hibernation; the wheelbarrow was also rescued from its angled reclination as I set to work. The task I set myself was to transfer some of the contents of the compost bin onto the garden's flowerbeds. Fortunately, I had the good sense to limit this exertion to two barrow loads; my state of being, this morning, confirmed that any further exercise could have proved disastrous. Shattered-ness has been retained at a degree only marginally greater than is my norm. Pacing is all!

Meanwhile, a slightly more passive pursuit has been the commencement of a project to transfer some of my vinyl and audio cassette collection to mp3 format. For far too long these musical and dramatic artefacts have been squirrelled away in sundry, non too easily accessed, hidey holes. I must own up to my preference for the sound spectrum derived from vinyl rather than CD but, unfortunately the turntable that obtains the best performance is also the most temperamental! For the vinyl transfer I'm using this hand-built turntable via a USB powered and connected phono pre-amp; for the cassette transfer a USB connected tape2pc deck suffices.

The transfer operation has more to do with potential ease of access, to the performances, than the overall sound quality; it has certainly taken me long enough to embark on this mission and, I'm hoping not to be too disappointed with the result! First transfers have come out better than I'd anticipated but, there's still a long way to go!

Dichotomy - IAIYH

I've just had a Damascene conversion; I now realize that this ME thing is all in my head.

My head keeps telling me that I ought to be able to do things (after all six or seven years ago it was no problem!). Of course, my body tells me in a most excruciating manner that I'm not able to do those things. The head starts grieving for the limitations of the body, the restrictions on any socializing that I used to enjoy etc.; so I try to exert myself a little more, the effects a couple of days later are devastating.

There must be something wrong with my head, it has the false belief that I ought to be able to manage these things!

Suddenly the remembrance, from long ago days when I studied philosophy, you can't derive an "ought" from an "is". Then I knew that my head was wrong, it's just a bad philosopher. I may still have ME but, I'm not going to let my head make me feel guilty about it!

Transitional Demands

What a pleasant surprise; I’ve just been counting the cost and it isn’t half as costly as I’d anticipated; admittedly, sometimes the price is paid later. As a parallel to climbing the property ladder, if one takes too many risks with their “pacing” they have to be prepared for landing up in negative equity. I’ve recently been trying to extend the boundaries of my pacing regime, how else am I going to know what I can manage but, at the same time, I’m listening to the signals my body transmits back to me.

We’ve recently decided on a course of revamping our bedroom, which requires a little shunting around, and spasmodic removal of, the extant furnishings and accumulated detritus. Yesterday was the time to assemble a couple of wardrobes, a task which at first seemed rather daunting, though it proved rewarding as one managed to satisfactorily assemble the said units (despite the manufacturers best endeavours to ensure the misalignment of certain component parts). It proved a rather perspirational endeavour, during which I several times struggled to ignore both pain and stamina thresholds before finally collapsing at the eleventh hour; not a moment too soon. Our friend John, who lives just down the road and had earlier proffered assistance, arrived on his white charger to finish off the task in hand.

An early night being required, by body and spirit, there followed a somewhat restless sedimentation of hours, exhaustion seemingly serving as a barrier to sleep. After 13 ½ hours of bed rest(lessness), aching joints, bones and muscles were hardly in any worse shape than has been the norm over recent months / years, and the brain seemed to be functioning as well as can be expected. A slow emergence into the daytime world was par for the course; sleep eventually caught up with me, early in the afternoon, as I listened (!) to Radio 4 with hands crampingly poised on my laptop keyboard.

For little signs of progress I give thanks but, I am intentionally avoiding any further exertion today, a fair reward for yesterday’s endeavour.